A Medical Writer's Musings on Medicine, Health Care, and the Writing Life

A Tale of Lost Luggage--and Its Implications for Health Care

2011-12-18T13:54:00.000-05:00

One of the hot phrases in health care these days is "patient-centered," as in "patient-centered hospitals," "patient-centered practices," and "patient-centered medicine." For all of you out there working on creating such "patient-centered" systems, let me provide a bit of advice based on a recent experience my family and I had with Delta Airlines. For if you substitute the word "customer" for "patient," you get what every business, whether in health care or not, should be focused on -- the person receiving, nay, purchasing, their services. The ones you hope will return, again and again.

I'm actually writing this as I sit in the lobby of a hotel in Park City, Utah. It is a gorgeous day outside, crisp and cold, just perfect for the skiing my family had in mind when we booked this trip; it's a short trip-- just 3 days on the slopes before we head home -- so every minute counts. Unfortunately, despite plenty of time sitting in airports yesterday (i.e., no tight connection), only 2 out of our 6 pieces of luggage made it here. Fortunately, one of those was the suitcase filled with skiing togs. Unfortunately, one of the missing pieces was my son's new snowboard, also filled with all of his ski togs. So while my boys are out on the slopes (the snowboard kid wearing my ski clothes), I'm sitting in the lodge awaiting our luggage. It is nearly noon -- half of the day gone, one-sixth, possibly one-third, of our vacation gone--and I have not yet set foot on the slopes. Sure, I could head over and buy all-new ski stuff. . . . but that isn't the point.

The point is how this was handled. I do understand that these things happen. And Delta did send the luggage out on the first flight this morning (hopefully it will arrive before dark). But other than a "comfort pack" with little ketchup-type packages of toothpaste and a t-shirt with the Delta logo emblazoned it, there was nothing else. No sincere apology. When I asked about refunds on the $100 those bags cost us to check, we were told to check the online site. Turns out that if it takes them more than 12 hours to get our bags to us, we get $25 vouchers for future travel -- but not, it seems, for the "oversized" luggage, the snowboard.

When I tweeted customer service at Delta about the same thing, I got the same offer.

Now, if I were running a customer service department, particularly one for an airline that has enraged passengers everywhere with exhorbitant fees for checked luggage (hard to travel without a suitcase, people, and you're in the travel industry) here's what I would have done.

I would have immediately refunded the customer the amount spent to check those bags and provided vouchers for free bag checking on the return flight. That would be in addition to a very sincere apology and some sense of empathy. That's all. It would have cost them $200. And they would have had a very loyal customer for life.

Because you know, shit happens. It happens in airlines, in doctor's offices, in hospitals. No one, no system, is perfect. But, as numerous studies on malpractice have shown, when doctors simply apologize and work to rectify the situation, patients are far less likely to sue. Heck, when doctors have worked to develop good relationships and partnerships with patients they are far less likely to sue.

Airlines-- all other service-oriented businesses, actually--need to learn that lesson.

We don't want to make money off mistakes. We don't want to sue you. We just want what's fair. And we want it delivered by real people who are trained to understand how someone might feel when they've been traveling for 10 hours, it's 3 a.m., according to their body clock, and the luggage for a long-planned and quite-expensive vacation is lost.

So next time you're double booked and a patient complains that they lost 3 hours of work time because you were late, don't come up with excuses. Just apologize! And waive the copayment. Oh, and figure out what's wrong with your scheduling system. Because if the system is supposed to be built around the patient, not the doctor or hospital or administrator, then you need to find out what is important to the patient. And I'll just bet sitting in your waiting room reading bad magazines for 3 hours is not one of them.

Plan B: Another Double Standard

2011-12-08T07:48:00.001-05:00

For what appears to be the first time in history, the head of the Health and Human Services Department has overturned a decision by the FDA. Was this regarding a drug that was so potentially dangerous it could kill or permanently maim people? A drug for which we have little clinical trial evidence or history? A drug that is produced in appallingly unsafe conditions?

No. It is a drug--actually, a single pill--for which we have years of safety and efficacy data, that is exceedingly safe and easy to use, and, get this -- doesn't even require a prescription from a doctor--if you're 17 and older.

What it does is require is that the patients buying it be at least 17 years of age and head to the back of drugstores to give their names and identification to a pharmacist before receiving it. Oh, and if the pharmacist doesn't want to provide it, he/she doesn't have to. And it does require a prescription for those 16 and younger.

It's Plan B, aka "emergency contraception." All its manufacturer was asking was that we stop requiring that women who need it -- those who had unprotected sex, missed a couple of birth control pills, are taking antibiotics (which can affect the efficacy of estrogen-based contraceptives, were raped, had the condom break or slip off, etc.,-- be 17 years old and have to "beg" a pharmacist for it. Instead, the request was to make it as freely available on store shelves as aspirin.

As FDA Administrator Margaret A. Hamburg said in a public statement: “There is adequate and reasonable, well-supported, and science-based evidence that Plan B One-Step is safe and effective and should be approved for nonprescription use for all females of child-bearing potential.”

Why did the HHS administrator--herself a woman--reverse the FDA's decision? Because since about 10 percent of girls as young as 11 are capable of bearing children, she felt that the drug could not be used safely by these very young girls.

Excuse me? So it's safer for these girls to get pregnant and have to either undergo an abortion or deliver a child? Helloooooo. And it's ok for these girls (or even younger children) to buy admittedly more dangerous over-the-counter drugs, like sleeping pills and even Tylenol? Heck, they can buy lubricants designed to "enhance their sexual pleasure" over the counter with no age restriction or having to request it from a pharmacist, but they can't buy a single pill that could prevent a pregnancy? And really, how many 11-year-olds are even going to know about Plan B?

The rhetoric around this issue has gone from the ludicrous to the insane. In yesterday's paper, one conservative group opposed open access to Plan B because it would "open the door for child abuse and child exploitation" if pedophiles could rape young girls then give them a pill to prevent pregnancy. Really? And allowing men access to condoms to prevent a pregnancy in children they abuse is ok?

Face it. The reason Plan B is not available on store shelves while condoms are is because we still, even in the year 2011, have a double standard when it comes to sexuality and women. It's the same double standard that led the FDA to reject a testosterone product for women to help with low libido (obviously not a problem when it comes to approving such products for men) and created a huge outcry when a vaccine to protect women against cervical cancer was approved for girls (because, of course, if they're now protected against the sexually transmitted virus that causes most cervical cancers, 12-year-old girls will now rush out and have sex) but elicited nary a whimper when it was approved for boys.

We do not want to admit that women--like men--are sexually active beings and provide them with the ability to protect themselves from an unwanted pregnancy.

And yes, I'm sure some of this has to do with our country's psychosis around abortion issues, even though the pill does NOT provide an abortion, only prevents sperm from reaching an egg or a fertilized egg from implanting in the uterus (obviously, some people need to review reproductive science to understand how pregnancy occurs). That's why it should be taken within 72 hours of unprotected intercourse.

I am beyond livid by this decision. But even more, I am saddened, disappointed and, yes, sickened by such a decision in an administration that I thought supported women's reproductive rights.

Happy Birthday Health Reform!

2011-03-23T22:21:00.001-04:00

Who would have thought when we first looked upon you a year ago, barely formed, still somewhat embryonic, that you would have grown so much in just a year, and created so much, well, trouble? Yes, I'm talking about you, health reform. After all, aren't you the reason for the sea change in Washington? Aren't you behind several pending appeals that will get to the Supreme Court? Aren't you the reason that the country is going to hell in a handbasket?

But wait. Let's look at some other major milestones of the past year.

-- You sent $250 checks to Medicare beneficiaries to help cover the "donut hole" in their drug coverage.
-- You created special insurance pools designed to provide health care NOW to people with preexisting conditions who can't get coverage.
-- You allowed parents to keep their kids on their health insurance until the children turn 26, providing a major safety net.
-- You did away with lifetime caps, enabling those with some serious medical conditions to continue receiving health insurance.

And that's just in a year. Imagine what the next year and the year after that will bring. So I'll say it again, Happy Birthday, Healthcare Reform. May you live to a ripe old age and only get better.

Implementing Electronic Medical Records: Advice from the Trenches

2011-02-24T23:04:00.000-05:00

Implementing Electronic Medical Records: Advice from the Trenches

The latest. . .from moi!

The Spirited Atheist: Who decides when medicine prolongs dying, not living? - On Faith at washingtonpost.com

2011-02-04T07:35:00.000-05:00

The Spirited Atheist: Who decides when medicine prolongs dying, not living? - On Faith at washingtonpost.com: "- Sent using Google Toolbar"

This article perfectly captures my earlier blog on end of life discussions.

Why are we so afraid of death?

2011-01-06T07:51:00.000-05:00

My cousin's mother-in-law is in her late 90s. She had horrible osteoporosis and can barely move. She has little cognitive function left. She requires nearly 24-hour care and no one would even attempt to say she has any quality of life left. She told her son years ago that she was "ready to go," and had had enough.

And yet when I asked my cousin's husband if his mother had any do-not-resuscitate orders, or had ever completed an advanced director outlining her wishes of what kind of end-of-life care she wanted, he said no. His sister, he said, just wasn't ready for that yet. So what, I asked, will you do when/if your mother gets pneumonia? Will you treat it with antibiotics? Will you put her on a respirator? If she is no longer able to eat, will you feed her through a tube?

He couldn't answer. And he was clearly uncomfortable with the questions.

Therein lies the rub. These are conversations that this woman, her doctor and her family should have had years ago. Heck, I'm only 48 and yet my husband and I completed our durable powers of attorney and advanced directives outlining our end-of-life wishes years ago. We're both in the healthcare field; we know what can happen at the end if you aren't clear.

What happens is that we throw money and technology at the patient in a desperate attempt to thwart death. That's why one-fourth of all Medicare expenditures are for the last year of life, an amount that hasn't changed in 20 years. Don't take my word for it; read the Health Affairs article here.

And yet I doubt most people who have watched an elderly loved one die would say that the death was a positive experience. How can it be when you're filled with tubes and surrounded by machines, when doctors keep ordering painful tests rather than allowing you to slip peacefully away in a quiet room, whether in a hospital or at home, kept comfortable with medication and oxygen?

The article I cited above was written in 2001, 10 years ago. In it, the authors note that the so-called "high cost of dying" is actually just the high cost of caring for someone with severe illness. The results of their study, the authors add, "emphasize the need to include end-of-life issues in discussions of other aspects of Medicare policy."

The effect? Not only does research show that such planning could save money, but, more importantly, it can improve the quality of the dying experience. Julie Appleby of USA Today wrote a very moving article about this in 2006. I strongly recommend reading it.

So you can understand the swing of emotions I've felt this week watching the Obama administration first issue a new administrative policy authorizing payment to doctors for having end-of-life discussions with their Medicare patients and then rescind the policy a few days later, ostensibly for "administrative reasons" but, as everyone knows, really for political reasons. The death panels, it seemed, were back.

I'm sorry, but no matter how hard I try I can't understand why some people think that talking with your doctor--and paying him/her for the time required to have these difficult conversations--will hasten your death or result in the decisions related to your end-of-life care being removed from your control. If you don't have that discussion then you are placing control of your dying entirely in the hands of the medical establishment, which is then bound by law and ethics to do everything possible to keep you alive, no matter what the economic or quality-of-life costs.

The only thing we know for sure in this life is that it will end. How it ends should be our decision; not the medical establishment's.

Quote of the Day

2010-12-17T09:26:00.000-05:00

"With this disappointing decision, the FDA has chosen to place itself between patients and their doctors by rationing access to a life-extending drug. . . We can't allow this government takeover of health care to continue any longer."

That quote, courtesy of this morning's Washington Post, incensed me to such a degree that I am writing this blog despite the two deadlines I have today. The speaker is Sen. David Vitter (R-La). The "disappointing decision" he refers to: The FDA's decision to remove the breast cancer indication for Avastin (bevacizumab).

I wrote about this earlier, and you can read the post here, but that was before yesterday's decision. I'm not going to comment here on the benefits or risks of Avastin. . . except to say that I'm sure there are individual women who are alive today because of it, and, quite possibly, individual women who are dead today despite it. But that's not how we do medical science, based on individual patients. We do medical science based on large clinical studies (which are often designed with and approved by FDA officials). It's not a perfect system, but it's the system we have.

For more than 50 years, that system has included the role of the FDA in approving drugs for marketing based on two things: their clinical efficacy and their risks. Which tips the scales higher? Are there other options available with better efficacy and fewer risks? If this is government takeover of health care, than I say. . . bring it on.

I don't know about you, but I've got enough on my plate what with earning a living, nagging the 18-year-old about college and scholarship applications, advising the 14-year-old on girlfriend issues, figuring out tonight's dinner, making sure my husband feels appreciated and loved, keeping up the house, and tossing the ball for the puppy to add "assessing risk/benefit ratio of pharmaceutical compounds" to my to-do list.

I also appreciate the government "interfering" in health care when it requires that medical professionals meet certain requirements for licensing; that hospitals and other healthcare facilities follow certain rules and regulations for safety and quality; and that drugs be manufactured according to good manufacturing guidelines. I'm only 48, but when I'm 65 and get my Medicare card, I think I'm also going to embrace that form of government "interference" in my healthcare.

Your thoughts?

You'll Repeal HC Reform Over My Dead Body. . . .

2010-11-04T23:26:00.002-04:00

Ok, maybe I'm being a bit extreme but I am getting really, really tired of the rhetoric I'm hearing now about the horrors of the 2010 health care reform bill. I'm just going to bet that most of the people trashing it don't have the slightest clue what it means and what it includes and what it could do.

Is it perfect?

Absolutely not.

But then, the only perfect things in this world are a newborn baby and the fois gras with sauteed apples I had for dinner last Saturday night (oh, and the Penfolds Grange wine my husband surprised me with on our 15th anniversary).

I'm not going to autopsy the health care reform bill here now (It's nearly midnight and I really need to get to bed). However, I just wrote an article about the costs of treating rheumatoid arthritis and what health care reform might mean for the millions of people in this country with the disease. It will appear at www.lifescript.com in the next week or two. In the meantime, however, I think that what I've written applies to any person with any chronic health condition, whether it's depression or cancer. In a nutshell, the bill should:

· Provide easier access to affordable health care. The high unemployment rate in this country has left many Americans unable to find affordable health insurance. Beginning January 1, 2014, however, insurers must renew and issue health insurance regardless of an individual’s health status. The law also prohibits pricing based on preexisting conditions. Tax credits and cost-sharing subsidies will also be available. In the meantime, the federal government has created the Pre-Existing Condition Insurance Plan to provide health coverage to individuals with preexisting medical conditions who have been uninsured for at least 6 months.

· Eliminate the doughnut hole. In 2010, Medicare beneficiaries who reached the doughnut hole received checks for $250 to help cover drug costs. In 2011, drug manufacturers will have to provide a 50 percent discount on brand-name drugs for those who reach the doughnut hole. Over the next nine years, various changes will reduce out-of-pocket costs for those who reach the doughnut hole until the gap is completely eliminated in 2020.

· Open the door for generic versions of biologic drugs. One reason biologic drugs (which are used to treat a growing number of chronic health conditions like cancer and autoimmune diseases) are so expensive is because they have no competition—or even the potential for competition. Under healthcare reform, the Food and Drug Administration can now approve generic versions, which should be less expensive than the branded versions.

· Change health plan appeal processes. Effective with new policies beginning in September 2010, new health plans have to implement an effective process for appeals and establish an external review process.

Again, is the healthcare reform bill perfect? NO. But, as I've said many times in this blog, it is a first step, one we desperately needed. Repealing the law because it's not perfect would be like cutting off your toddler's legs because she stumbled when she tried to walk for the first time.

Again, as I've said before in this blog, please chill. Take a breath. Let's focus on what's good in healthcare reform and implement it; and on what could be better and fix it. But let's not ditch the whole thing and start over.

People, we simply do not have time for that.

30 Spooky Freelancing Practices | FreelanceFolder

2010-10-31T10:03:00.001-04:00

In Honor of Halloween: 30 Spooky Things Freelancers Should Never Do

30 Spooky Freelancing Practices | FreelanceFolder

Which are you guilty of?

My sins include:

18
19
22
23 (sometimes)
24 (sometimes)

Yes, We Need Some Sanity--For the IRS!

2010-10-29T08:44:00.000-04:00

The 14-year-old has homecoming (and a date) this weekend, otherwise we would be at the Jon Stewart Rally to Restore Sanity. If I were in Washington, however, I'd also have to wander over the IRS to try and restore a little sanity to the idio. . . um, hardworking government employees who work there. Seems the IRS recently issued its annual rules about what the money in medical savings accounts (those accounts created with pre-tax dollars) can be used for.

As The New York Times reported earlier this week, the IRS says you can spend those pre-tax dollars on items like dentures, pimple cream, and even replacing real grass with turf if your kid has severe allergies; but not breast pumps. Why? To quote the Times' article: "breast-feeding does not have enough health benefits to qualify as a form of medical care." Instead, the IRS views it as being a form of nutrition only.

When I read those words my first impulse was to hop in my car, drive to DC, find the IRS building, whip off my shirt and bra, hook up a breast pump to my boobs, and march on the IRS office, preferably with about 5,000 other women doing the same thing. Never mind that it's been 13 years since I last nursed a baby. Never mind that this would, quite likely, cause the three children whom I once nursed (now nearly 24, 18 and 13) to tell their friends that, sadly, their mother died before they were born. I was just so incensed I didn't know any other recourse.

Luckily, I calmed down (it was also about 11:30 p.m. and I was tired). Instead, I'm writing this blog with a request. If you have a few minutes, please call the IRS taxpayer advocacy hotline and register your complaint: 877-777-4778. Unfortunately, there is no email to send scathing messages to.

When you call, give the advocate just a few examples of the medical benefits of breastfeeding, including improved immune system, and a reduced risk of ear infections, obesity, asthma, allergies, diabetes, childhood leukemia, sudden infant death syndrome and gastrointestinal diseases. And that's just for the babies! For the moms, the medical benefits include a reduced risk of type 2 diabetes, and breast and ovarian cancer.

The source for this information? Reports from other government departments: the Agency for Health Care Quality and the Centers for Disease Control and Prevention.

Also remind them that for all our good intentions, it's nearly impossible for most women to breastfeed for more than a few weeks without pumping some milk for the freezer. My breast pump (which I loved more than my husband during my years of nursing) made it possible for me to nurse 3 babies for a combined 5 years and work full time as a newspaper reporter without ever resorting to formula. Bottom line: it was as important during that time in my life as moisture-wicking nightgowns (think hot flashes) are today (and I bet I could buy said nightgowns with health savings accounts funds!).

And please, before you hang up, issue an invitation to the IRS to pop over to the rally on Saturday. Because god knows they need some sanity!

Looking at the Long Term: Impossible in Our Healthcare System?

2010-10-22T08:54:00.000-04:00

I spent last week in Gothenburg, Sweden covering the European Committee for the Treatment of Multiple Sclerosis (ECTRIMS) meeting. Lots of good science, lots of excitement over the new oral and targeted therapies coming on the market to treat this awful disease. But what I want to write about isn't the science, but about how it will play out in the brave new world of health care in which we all live in today.

For instance, consider the first oral therapy to hit the market: Gilenya (fingolimod), which the FDA approved in September. Last month Novartis announced the price: $48,000 a year.

This is not a rant against the high cost of drugs, however. It is a rant against the inability of our healthcare system to take the long view of the impact of such drugs, a view that is particularly important with a chronic disease like MS that strikes healthy young adults in their early 20s and 30s.

Because what I heard at the meeting was that treating early—as soon as the first clinical signs of MS appear—can slow the progression to disability, and that some of the newer drugs may actually put patients into remission.

This is extremely important given the significant medical and societal costs of the disease. More than half of patients with MS have to quit working within 10 years after their diagnosis, often because of cognitive declines. Studies find that while direct medical costs such as pharmaceutical drugs remain about the same regardless of the severity of a patient’s disease, the indirect costs—lost productivity, need for caregiver support, early retirement—increase sharply as the disease progresses.

This didn’t matter much when we didn’t have good data or drugs on slowing the disease’s progression. Now we have both. And, indeed, a study at the meeting on the economic costs of one of the newer drugs, Tysabri (natalizumab) found that although the drug cost more than the older drugs Rebif (interferon beta-1b) and Copaxone (glatiramer acetate), over time patients on Tysabri actually had lower overall costs than those taking Rebif or Copaxone. Other research attributes lower direct and indirect costs to Tysabri to its impact on cognition. We don't know if Gilenya will have similar long-term benefits, but we do know that patients are far more likely to take their medicine if they can swallow a pill rather than give themselves a shot, and that alone could improve overall disability.

But I heard from a US neurologist who only treats MS that insurance companies have made it so difficult for him to prescribe Tysabri that he dreads what they’ll come up with as new drugs come on the market. He has to get preauthorization, justify the need for every patient, and provide extensive follow up paperwork. He has two full-time employees in his office who do nothing but deal with insurance companies for his patients. Patients on Tysabri have to pay far higher out-of-pocket costs for the drug than for older therapies because it is on a higher “tier.” Yes, Tysabri has more potential serious side effects than those older drugs; but it also appears more efficacious in the short- and long-term.

Why don’t insurance companies look at the long-term costs? They have no incentive to. By the time Tysabri begins to “pay for itself” in terms of reduced disability, that patient will likely be covered under a different insurance. So the insurance company that initially paid the high cost for the drug early in the disease won’t reap any of the economic benefits later on.

Compare that to Sweden, which provides comprehensive, cradle-to-grave healthcare coverage for all its citizens. Sweden recognizes the overall economic benefits of early treatment with the most effective drugs, and provides full coverage with no hassle factor for Tysabri, as it likely will for the other MS drugs as they come onto the market.

As long as our healthcare system remains a fragmented mess, however, we will forever be unable to look beyond the short term to consider the intangibles that contribute not only to the overall costs for a disease, but to the overall quality of a person’s life.

Ghostwriting--Don't Blame the Writers

2010-09-14T12:41:00.000-04:00

Anyone involved with medical communications knows well the recent controversies surrounding "ghostwritten" journal articles, i.e., articles that were written by medical writers who received no recognition for their work. I'm not going to get into a big discussion about the situation here, too swamped with deadlines right now, but I just had to post about something that just happened.

I got an email this morning from a doctor asking if I could help him write some articles and submit them to journals. He would provide all the information. Certainly, I told him, I'd be happy to. We discussed a price and all seemed well until I said, "Oh, you should know that you will need to give me some kind of credit for assisting with the article." He was flummoxed, didn't know what I was talking about. So I explained about the whole ghostwriting thing, the ethics policies of the American Medical Writers Association, etc etc. I stressed that I was not expecting to be named as an author, only to have some kind of blurb along the lines of, "Thanks to Debra Gordon, MS, for her assistance with the drafting of this manuscript."

He just emailed back that he couldn't accept that!

Oh well, nothing ventured nothing gained.

Getting Sick--Not for Me

2010-08-27T08:01:00.000-04:00

I don't do well with pain. I learned that lesson all-too-well during the birth of my first son, when, after 10 hours of labor jump-started by a pitocin drip I finally got an epidural. Nothing--and I mean nothing--has ever felt as good as the ebbing of that pain. I relearned the lesson during the birth of the second son, this time determined to go natural all the way, when, after a few hours, I told the doula to "shut up" and ordered my husband to hunt down the anesthesiologist and "Get me an epidural--NOW!" He listens well.

By the time the third son was born, I had the drill down pat. I was admitted to the hospital to be induced again but this time, as soon as the IV was hooked up and before the first labor pain hit, I had the anesthesiologist in the room putting in the epidural. It was a completely painless birth--and a lot of fun.

My issues with pain extend to my issues with being sick. I simply do not like not feeling well. I've been very lucky and extremely blessed in my life--the most serious thing I've ever had wrong with me was strep throat or a stubborn sinus infection. As a medical writer, I'm far-too-familiar with all the things that could go wrong with me, so I feel guilty even complaining about my minor issues.

But hey, this is my blog, so I can whine if I want to. This week I've been suffering with an ear infection. Otitis externa, to be exact, aka "swimmer's ear." And no, I haven't been swimming.

All I can say is that I now really understand why my babies screamed when they had ear infections. If I were 8 months old I'd be screaming, too! As I described to my husband the other night when I was holding very still and practicing my Lamaze breathing to "rise above" the pain in my left ear, "I feel like I'm trying to push a Volkswagon out of my ear."

The pain is finally fading, thanks to the antibiotic drops (and held in check by way-too-much ibuprofen and acetaminophen), but the experience has frightened me. I'm now 47. . . . at an age when more things are going to go wrong in my heretofore relatively reliable body. As it is, my right arm/elbow has begun hurting a lot lately, a writer's version of "tennis elbow" that, I'm told, is called "mouse elbow." My left knee often twinges frighteningly when I'm working out. And if I haven't exercised in a day or two, my husband tells me that my body is "crooked."

I do not have time or energy in my life for illness. So I'm going to continue doing whatever I can to avoid it. . . .exercising even though I hate it; eating right (which is fairly easy for me); and drinking a lot of wine (even easier).

All of which is a roundabout way of saying to you what I've often said to my family and friends. There really is nothing more important in your life than your health.

Avastin and Breast Cancer

2010-08-17T09:55:00.000-04:00

Time to get back up on my soap box.

Next month, the FDA is supposed to consider taking the unique, first-time-ever step of revoking a drug's indication not because it's dangerous, but because it doesn't work well enough to offset its risks. Never mind that it costs about $8,000 a month.

The drug is Avastin (bevacizumab), a targeted monoclonal antibody that prevents tumors from creating and maintaining their own blood supply, a process called angiogenesis. Without oxygen and nutrients from blood, tumors can't keep growing.

Avastin is the world's best-selling cancer drug, approved for use with chemotherapy to treat lung cancer and metastatic colorectal and breast cancer. It is also being investigated (and, likely, being prescribed off label) for numerous other cancers.

The problem comes with breast cancer. Avastin was approved for breast cancer under an FDA program called "accelerated approval" in which the agency provides "conditional" approval for a life-saving drug that appears effective so as to get it to patients quickly while requiring that the manufacturer conduct more studies demonstrating its long-term effectiveness. About 90 drugs have been approved under the accelerated approval program in the past 20 years and none has ever had its approval revoked (one was pulled from the market by the manufacturer after post-marketing studies showed it was not effective and it actually increased the risk of death in patients using it).

In the case of Avastin, a single, late-stage clinical trial demonstrated that Avastin + chemotherapy increased progression-free survival (or the amount of time until the cancer began growing again) by 5 months compared to standard therapy. What the trial didn't show, however, was if the drug increased life expectancy, the gold standard of cancer trials. In other words, did women taking Avastin live longer than women with similar disease who didn't take it?

Apparently not. Results from two other trials conducted by the drug's manufacturer, Roche/Genentech found that the drug only extended progression-free survival between one and three months, with no improvement in overall survival. The company, however, cites evidence that the drug reduced the risk of progression or death (a combined endpoint) by 31% to 52%.

Given the potential risks of Avastin, including holes in your stomach or intestines, bleeding, blood clots, and high blood pressure, these trials tipped the balance away from benefits towards risks. Thus, early last month an FDA committee recommended that the breast cancer indication for Avastin be revoked. The full FDA is set to rule on the issue next month.

There's a lot of rhetoric in the media and blogosphere that the FDA wants to revoke the indication for Avastin because of the cost. While the price tag for Avastin--like most other targeted cancer therapies--is enormous, and should be considered in any decision on its fate, the FDA, unlike the British and European "FDAs" is not allowed to consider cost when making decisions; only clinical data. That may change --and should change, in my opinion--under healthcare reform.

But I digress.

If the FDA sides with the committee recommendation, Avastin will still be on the market and doctors could still prescribe it off label to women with breast cancer. But without an official indication, insurance companies and Medicare will be under no obligation to cover its approximately $8,000-a-month cost because without an official indication its use is considered "experimental."

I'm feeling a bit like we're missing the cart for the horse. In cancer today, the gold standard against which all oncology drugs are judged is whether the drug enables you to live longer, not whether it gives you more months before the cancer starts growing again. But in many metastatic cancers today you aren't given just one drug and then, when it stops working, told to plan your funeral. You're simply switched to a different drug.

I know this first hand. My cousin Arlene has been living with metastastic breast cancer for 6 years. Just a decade ago if you'd told oncologists that women like her would routinely live that long after their cancer had metastasized they would have laughed you out of the examining room. Not so today.

I've lost track of the number of drugs Arlene has been on in the past six years. When one fails, her doctor puts her on a new one, often one that was just approved or even still in clinical trials, or changes the dose, or adds a different drug. When spots of cancer turned up in her brain, an outpatient laser brain surgery took care of them.

The side effects from her treatments have been minimal. . . she's gained some weight, much to her chagrin, and she has a skin rash that makes her very sensitive to the sun. One drug did make her lose her hair, but it's grown back, and another gave her diarrhea, but that's over now, too.

Today, she's doing fabulous.

She hits the gym two or three days a week, travels constantly (Las Vegas, Key West, and Aruba are just a few of the hot spots she and her husband have hit in the past year or two), and she just booked a cruise for February.

So my question is this: Who is to say that those extra "progression-free" months Arlene got from the various drugs she took won't eventually add up to extended survival?

My point? It's time we focused on the 800-pound gorilla in the room and found a way to design cancer trials that more accurately reflect what goes on in the real world, not in the rarified world of clinical trials.

If we could do that, then maybe debates like the one we're having over Avastin will be a thing of the past.

When Is Enough Enough?

2010-07-23T08:09:00.000-04:00

A new survey in the journal Health Affairs journal synthesizes nearly everything I believe is wrong with the US healthcare system. The survey found that patients believe that more care is better, that the latest and most expensive treatments are the best, that none of their doctors provide substandard care, and that evidence-based guidelines are a pretext for denying them the care they need and deserve.

Sigh.

Until we can retrain consumers (that would be all of us) to understand that in medicine more is NOT better, that evidence-based guidelines may translate in some instances into less but better care, that doctors are falliable and should be questioned, and that the cost of a treatment has nothing to do with the quality, we will never get out of the healthcare quagmire in which we find ourselves.

Your thoughts?

Grand Rounds: TOPIC: Customer Service in Healthcare

2010-06-22T06:58:00.001-04:00

I want to start this week's Grand Rounds' blog with my own blog post. I asked for postings on customer service and I have one to share. My 17-year-old son has been having some issues with depression and social anxiety. We got him in to see a therapist and his family practitioner prescribed a low dose of Prozac, both of which seemed to be helping until he hit a crisis when his girlfriend broke up with him. He literally fell apart and scared us to death.

His therapist called me back the night of the crisis within 5 minutes of my leaving a message with the answering service. He was only in town for a week before leaving for vacation, but he saw our son twice and called our son's primary care doctor to suggest upping the antidepressant dose. The doctor called me one evening to say she totally concurred and, since our son's therapist would be out of town the following week, wanted to see our son herself.

I was so touched. I have never had an MD (who wasn't a psychiatrist) want to see me (or anyone in my family) for anything other than a strictly physical illness. Not only that, but I knew that she was dealing with her own health crisis--a 6-month-old with Down Syndrome who had just undergone open heart surgery. Her caring and understanding literally made me cry; and my son really enjoyed talking to her. She--and my son's therapist--have restored quite a lot of our faith in clinicians, not to mention our son's mental health.

Now, onto the blogs!

Although I asked for blogs related to customer service in medicine, I did promise those would not be the only ones I would highlight. Along those lines, I have to be selfish and nominate a blog I work on, Pediatric Perspectives, which provides topics of note for community pediatricians and family practitioners. The blog is supported by the Helen DeVos Children's Hospital and written by yours truly with the incredibly fabulous input of many of the hospital's clinical staff. The most recent posting is on the American Academy of Pediatrics' recommendations on swimming lessons for kids.

Enough self promotion!

Do want to know what life is like for surgeons? How about a surgeon from the nearly unpronounceable town of Mpumalanga, South Africa (yes, the same country in which the Soccer World Cup is now occurring). Then check out "Other Things Amanzi." This week the surgical resident shares his experiences with the busiest rotation of all: vascular surgery.

Initiate Systems, an IBM-owned healthcare IT company one might never think of when it comes to medical blogs, let alone ones based on customer service, just posted a fantastic blog by Jamie Welch, Chief Information Officer at the Louisiana Rural Hospital Coalition, Inc about using information to improve rural health care. The post contains some great metrics and a case study demonstrating how medical customer service has improved for underserved patients in rural Louisiana.

Meanwhile, Initiate's director of product marketing, Deanna Nole, wrote a post last winter on how to use relationships to improve patient care.

Want to hear about customer service from the patient perspective? Then hop over to the Life of a Grad Student with Lupus. This is not a hearts-and-roses kind of blog, but that one that hits hard where it hurts--and one that any clinician in the field should be reading to get a sense of how what you say and do impacts your patients.

How about customer service from the perspective of one who lives on the other side of the "pond?" That's what Henry Stern's INSUREBLOG offers. The blog covers insurance issues, principles and solutions related to healthcare in the UK. The one we're highlighting here is a frightening post about how 3,000 patients die each year because of short staffing in UK hospitals over the weekends.

Ever wondered how care from hospitalists could translate into better customer service? To find out, you have to read Chris Langston's thoughtful post on the topic at health AGEnda, the John A. Hartford Foundation blog.

Other recommendations this week:

Saving Money and Surviving the Healthcare Crisis, courtesy of practicing primary care doctor David Liu, who provides insight into what patients must do to stay healthy and spend wisely as the healthcare system spirals into expensive anarchy.

Diabetes Mine. I have to admit to doing quite a lot of work in the diabetes arena these days (after all, you ARE reading a blog by the co-author of the "Complete Idiot's Guide to Type 2 Diabetes"). Even so, the topic of Amy Tenderich's latest post, about a California ruling that only nurses can administer insulin to diabetic kids at school, sent chills down my spine. See if you feel the same by reading the post.

Medical Lessons. In which Elaine Schattner, MD shares her reasoning for rejecting the concept of a "medical consumer" because it debases the patient-doctor relationship and, ultimately, renders patients as objects.

Better Health. This is the web site that roped me into hosting Grand Rounds and whose owners I so admire! So read Better Health's submission for this week's Grand Rounds: A Man is Not Equal to the Sum of his Medicine Problems, highlighting the uniqueness of every patient through the chilling anecdote of a man who had been misdiagnosed with kidney disease.

That's it for this week! If you're interested in getting into Grand Rounds next week, check out the details from Dr. Elaine Schattner of Medical Lessons.

Grand Rounds: Best Medical/Health Blogs on the Internet

2010-06-19T11:56:00.000-04:00

Just a reminder that I need your recommendations for Grand Rounds for GetBetterHealth. On Tuesday, June 22 I'll be posting on my own blog an overview of the best stuff out there for the week with an emphasis on postings that focuses on customer service in health care. Want to get your blog considered? Email me directly at debra@debragordon.com and put "Grand Rounds" in the subject line.

Remember: DEADLINE is Monday morning at 10 a.m. eastern.

You can read all the details here.

Happy blogging!

I'm Hosting Grand Rounds!

2010-06-15T08:00:00.000-04:00

Just what every non-MD fantasizes about: hosting a Grand Rounds! Ok, ok, it's not the kind of grand rounds in a hospital where I get to impart my vast medical knowledge to other healthcare professionals (a good thing, too, given that the initials after my name are MS [master of science in biomedical writing] not MD). Instead, it's the Grand Rounds for GetBetterHealth, a blog site for all things medical/health related. Grand Rounds is a weekly summary of the best health blog posts on the Internet.

What this means is that I will post a blog here (that will be carried on Get Better Health and other sites), aggregating the best blog postings in the health/medical field that week. For my Grand Rounds--which will appear Tuesday, June 22, 2010--I'd like to focus on a subject near and dear to my heart: customer service in healthcare (you can read a post on the topic here).

So if you're interested in having your blog on this topic promoted (or you write an awesome health/medical-related blog and want me to feature it), email me directly at debra@debragordon.com. Put Grand Rounds in the subject line and give me a one-paragraph description of your blog. You'll have a better shot at being highlighted if you can share a blog post on customer services in healthcare, but simply having a great, well-written, blog that deals with some aspect of healthcare and/or medicine will also get you a listing and a link in the Grand Rounds. Other rules:

One entry per blogger
Recent posts between 400 and 1000 words are preferred
Posts are to be written for a general audience

Looking forward to seeing what you come up with!

Customer Service in Healthcare

2010-05-26T10:21:00.000-04:00

Just read an article about a new web-based service called MedWaitTime that allows patients to check if their doctor is running late before heading to the office for their appointment, kind of like you can check to see if your flight is late before heading to the airport.

Brilliant.

Nothing peeves me more than sitting in a doctor's office reading 4-month-old tattered magazines on topics I care nothing (Saltwater Fishing? Seriously?) not because the doctor had an emergency (when is the last time a dermatologist had to run out to save someone) but because the office staff routinely double books. I can't count the number of times I walked out (my limit is 30 minutes unless I'm in agony) after giving the front office a targeted piece of my mind.

Since we're on the topic of customer service as it applies to medicine, here are few other areas in which medical offices and their staffs could improve when it comes to customer service:

Get a web site and put the paperwork you need from us online. Filling out forms with a pen is so 1990s. In fact, how about letting us book appointments online? My mammography center does this and it's so much easier than calling, going through the 5-minute voice mail, then talking to some clerk who can't spell your name right.

Communicate via email. I know some doctors are doing this, and some insurance companies are even paying for it. But the vast majority do not. My own internist, whose office is completely computerized, won't do it because, he says, he's worried about "privacy issues." Give me a break. there are plenty of encryption programs out there. He's worried about getting paid for his time. Well you know what? I'm worried about getting paid for my time, too. And if I have to book an appointment to talk to you about the side effects from a drug, or express a concern over a new symptom and ask if I should come in, then I may have to find a new doctor. I have excellent health insurance; I am NOT the kind of patient you want to lose.

Share our test results with us. It's my blood, my urine, my breasts. Why do I have to call and ask for the results most of the time? Don't I have a right to know what my cholesterol is? See, if you did the email thing you could just scan in the results (or have them faxed directly into your computer) and then email them to us.

Find time to see us when we're sick. If my son has a temperature of 102.5 and a sore throat, I really don't want to go sit in the urgent care center for 3 hours because you can't fit me in. You're a doctor, for goodness sake; keep some slots open for, well, sick people. And if you decide to cut back to part time (as my kids' doctor recently did) tell us so we can find another, full-time doctor; allow your partner to see us; or hire a temporary doctor.

Computerize your office. My son's doctor picked upon the fact that he needed a tetanus, DPT, and rubella booster even though we were seeing her for a completely different reason because a program in her computer alerted her to the need. Doctors are always complaining that they have to deal with too much paperwork and see too many patients to make a living, but a surprisingly small number of them take advantage of technology to make their jobs--and patient care--better.

Respect our privacy. If I'm concerned that my son is depressed, I may not want to share that information with the clerk who answers the phone; I want to talk to you about it. Neither do I want the front desk administrator to loudly ask me when I'd like to book my colonoscopy as I'm checking out.

Where do you think medical professionals could improve their customer service?

Your Health on Stress

2010-05-04T07:28:00.000-04:00

So I've been thinking a lot about stress lately. Obviously, it's because I'm in one of those work/personal periods where the word comes in all capital letters and my dreams seem to be caught on a continual loop of taking-an-exam-in-a-class-I-forgot-to-attend-all-semester (and yes, I've been out of school for 26 years now)/realizing-I-just-bought-a-new-house-and-have-to-move/or, finding-that-I-have-10-stories-due-tomorrow (for the newspaper at which I haven't worked in years).

This latter dream comes closest to my own situation at the moment given that I find myself with just a wee bit too much work for the time allotted (ok, maybe a lot too much work). I'm coping--going to bed later, getting up earlier, reaching out to a couple of writer friends for help) but it nonetheless has my cortisol and norepinephrine hormone production on overtime.

Which brings me to the point of this blog. Your health on stress.

I can't begin to count the number of articles I've written over the past 25 years about the effects of stress on health. It's one thing to write them, however, it's another to actually see them. For instance, my 17-year-old son is in the midst of one of the most stressful times in an adolescent's life: the end of his junior year in high school.

Between the end-of-year projects, AP tests, SAT scores, colleges to think about, girlfriend to manage (or, more precisely, be managed by) on top of the daily soccer games, fewer than 6 hours of sleep he gets a night (thanks to ridiculously early starting times for high school in our area) and a mother who keeps pestering him about other things like a summer job and an honors project, it shouldn't have surprised me to come upon him vomiting his dinner the other night. And no, he didn't have a fever.

"What's wrong?" I asked.

"Everything," he said between heaves.

And therein lies the rub.

When they were little, I could fix anything for my kids. Scraped knees were cured with Barnie band-aids, kisses and a Popsicle; bad dreams banished with a night of snuggling; that mean boy in first grade? Let me have a word with his mother.

But when it comes to the amorphous stresses of real life, of growing up, of imminent adulthood. . . .well, quite frankly, I'm stymied.

Oh, I can do the motherly things. Clean up the vomit, make an appointment with our family practitioner and with a therapist to check the status of his physical and mental health, make a list of everything that's got him tied up in knots so he can see that it's not quite as bad as he thinks it is. But I can't make the stress go away. And only he can learn how to manage the stress.

It's a lesson I'm hoping he can learn, because if there's one thing I've learned over the years it's that stress is like a tsunami. Building slowly but capable of drowning you if you don't stay ahead of it.

During this stressful period in my own life, for instance, I'm trying to keep ahead of the wave by picking up a rotisserie chicken for dinner instead of cooking something from scratch; making it a point to hit the gym even on days when I'm so swamped I'm ready to crawl into a fetal ball under my desk; and even taking an afternoon off when I should have been working to go fishing with my husband and son. Sleeping with a warm puppy snuggled against my side doesn't hurt either (did I mention my husband is traveling for about a month, adding to the stress?)

I know that both my son and I are actually quite lucky; our stress is all related to good things: too much work, too many possibilities. It's not tied to foreclosure, family problems, a lost job, a child off to war. But you know what? Our adrenal glands don't know that. They don't care what's behind your stress, only that it exists. So they keep churning out those health-damaging stress hormones. Our challenge, then, is to find more constructive things for those chemicals to do than tear up our insides.

How do you manage stress these days? Has stress ever affected your health?

The Future of Social Media

2010-04-24T14:50:00.000-04:00

So you're probably wondering what I'm doing blogging about social networking when this is a blog about health and medicine and medical writing. Well, just consider:

Thousands of tweets are sent every hour about health/medical issues. Want a cool way to follow them? Check out Health Tweeder.
Thousands of health care professionals, medical organizations and healthcare facilities have Facebook pages.

And I'm sure that's only the beginning; those, together with Linked In, are the only social networking sites I currently use so that's all you get for now.

Anyway, I'm here at the American Society of Journalists and Authors annual meeting in NYC. Our lunch speaker was Peter Shankman, social media guru and PR maven. His advice was not only hysterically funny (explaining to the under-30 crowd in the ballroom that MTV used to have music videos--not reality TV--and that telephones used to have cords) but right on.

Among his nuggets of wisdom we would all be wise to listen to:

Be transparent. If you screw up, admit it. If someone is paying you to hawk their product, admit it. If something goes wrong with the surgery, the medication, the procedure--admit it.
Social media should be about everyone else--not about you. That means linking to interesting content, retweeting interesting content, tweeting to help out your friends, patients, business associates, etc.
The good writers will win. Learn to write and you will find your audience. Good writing is brevity and brevity is social media. I think I'm going to have this advice tattooed on my teenaged sons' foreheads; like too many of their generation, they only know texting shorthand. Have no clue how to put together a complete sentence in the active voice (but then, neither do most of the people I meet). Peter once received a cover letter from a Harvard grad that said, "I look forward to working 4 you." Needless to say, she didn't get the job.
Be relevant. That means giving your customers (patients, clients, etc.) information in the way in which they want it. How to know? ASK THEM. Then give it to them. An aside: Twitter is the Pets.com of 2010. Why? Because it hasn't made a cent. Don't focus on the Twitter; focus on the form of communication that is Twitter, basically, the text. And keep in mind that the average attention span of the average person in this country today is about 2.3 seconds: about as long as it takes to read 140 characters.

And the future of social media? All social media will become consolidated and linked. Meet someone, "bump" to exchange information, and, with each succeeding interaction through various portals, our network will "learn" more about us and our preferences and keep those with whom we interact in our network while weeding out those we never "see."

It's a Brave New World.

I'm Scared

2010-04-10T09:46:00.000-04:00

First, apologies for my absence; "real" work has interfered.

Now, the explanation for the title of this blog. I'm scared because I'm reading articles about people threatening to kill--note that word "kill"--elected officials because of their vote on healthcare reform.

A man was arrested last week for his threats against Nancy Pelosi; another man was arrested for threatening the two senators from Washington state, saying: "I do pack, and I will not blink when I'm confronted. ... It's not a threat; it's a guarantee." One congressman's campaign received an email that read: "If our tea parties had hoods, we would burn your (expletive) on a cross an the White House front lawn," while another had bricks thrown through the windows of his brother's house (which was listed as his official address) and the propane line to his gas grill was cut.

The Associated Press reported that the Senate's Sargent-at-Arms, who monitors security in both houses, reported 42 incidents in the first three months of this year, nearly three times the 15 cases that occurred during the same time last year, and all related to healthcare reform.

So let me get this straight. People want to murder elected officials because they voted for a bill that guarantees health insurance for all Americans, ends many of the most vile policies related to commercial health insurance (no coverage for preexisting conditions; revoking insurance when people get sick; ending coverage after certain dollar amounts are reached), and puts into place numerous programs and policies to begin improving the system and reigning in costs.

Is this the United States of America or some rogue nation like Somalia? What happened to firing off shots via a letter to the editor or a blog instead of literally firing off a shot, which occurred at the campaign offices of a Virginia congressman?

Here's another reason why I'm scared--because at the same time the rhetoric is turning uglier and more violent, newspapers are dying. For 250 years a free press has been critical to our democracy, to investigating corruption and wrongdoing, providing some modicum of objectivity, and reaching a large enough population of the country that their words had some impact. Not only that, but it takes time to read a newspaper. Time in which to reflect rather than react on what you've read.

So I'm scared. This country is becoming so polarized, so "us-against-them," so angry and bitter and full of vitriol, that I don't see how our current political system can survive. I feel powerless to do anything about it--except write the few words I've written here and ask everyone to Please. Calm. Down.

What Are They Smoking?

2010-03-25T08:08:00.001-04:00

A member of the American Medical Writers Association freelance listserve recently posted this help-wanted ad from Craig's list:

"We're looking for an experienced analyst/wordsmith to make sense of the health care bill. We will pay a per-project fee for a qualified writer to put some hard work into summarizing the bill in an 8-10 page white paper. We have a strong preference for individuals with a background in Sociology, Policy Research, Health Care, or statistical analysis. Above all - however - you should have some clippings to point us to so we can evaluate your writing chops.

As you can see, this report will include a lot of information, but it's important that you are succinct and clear in your prose. Think of it as a detailed study done by a respected think tank, but
produced for the average consumer."

The "fee" (and I use the term loosely) for this "detailed study"? $100. Which wouldn't even cover the cost of toner to print out the full bill for reading!

Hence the title of this blog.

The people behind this posting are not the only ones smoking something, however. Content sweatshop Demand Inc has also been trolling for writers, offering what amounts to a few pennies a word for churning out short articles on topics that a mathematical equation has determined will bring in the most web page visitors, spiking ad revenue. The sad part is that thousands of my fellow freelancers have taken up the challenge, earning, if they're lucky, about $20 an hour (before taxes and with all expenses out of their own pocket). Most earn far less.

I'm reminded of the scene in the classic Great Depression tome, The Grapes of Wrath, when the Joad men find that by the time they arrive at a job site, the promised hourly pay has dropped significantly because so many other hungry men were willing to work for even less--some for just a roof and a meal.

Is this what writing is coming to? Is there no recognition of the skill required to turn disparate facts into compelling prose? To research a topic to find the hidden gems? To conduct interviews with scientists, doctors and other experts and then translate their jargon into something someone actually wants to read--and can actually understand?

As my AMWA colleague and fellow freelancer Bruce Wilson noted in a recent posting:

The same market forces that devalue writers and journalists allow Wall Street bankers to pocket billions after bankrupting the economy and providing absolutely no value to society at all. Are we supposed to get over that as well?

A skilled, experienced medical writer is worth what he or she can provide society - high-quality, accurate research manuscripts, medical education, and other documents. The work of medical writers saves lives and prevents illness. To say that has it no inherent monetary value is to accept the insane view that money has no relationship to social value and that it should be allowed to do what it wants. It's that view that got us into the mess we are in today.

The only way writers are going to be able to stem this "race to the bottom" is by refusing to play. I understand that it's tough out there; I understand that millions are unemployed and will jump at anything. But if you're freelancing you're not unemployed; you are your own boss and you can determine your salary. I've said it before and I'll say it again: You get what you pay for, particularly when it comes to good writing. Writers of America, stick together and prove it!

Your thoughts?

Pulling the Covers Over Your Head

2010-03-17T10:06:00.002-04:00

My alarm clock is set to "radio" and my radio is set to the local NPR station. Now, I'm not one of those people who leaps out of bed when the alarm goes off. Instead, I lie in bed slowly waking up to about 15 or 20 minutes of the morning news. This morning however, the news just made me want to pull the covers over my head and never get out of bed. That's because the focus was healthcare reform, and the amount of misinformation and, yes, I have to say it, stupidity out there about what the current proposals will or won't do is making me literally sick to my stomach.

And then there's what my own state--Virginia--has done. For those of you who eschew the news (and you're pretty smart to do that these days given how depressing it is) the Virginia General Assembly passed--and the governor promises to sign--a bill authorizing the Attorney General and his staff to assist Virginians who want to opt out of mandatory health insurance, should health reform pass. In other words, the state that is for lovers just told the federal government to take a hike.

Although this is likely unconstitutional, it is the stupidity behind the legislation that makes me furious. If we allow Virginians to opt out of mandatory health insurance, who do you think will do the opting? The sick 55-year-old who can't find coverage and is paying thousands of dollars a month in medical expenses or the healthy 25-year-old who thinks he's invincible anyway?

If any of you read my recent post on risk pools, you'll immediately understand the problem. If the healthy people opt out of insurance then the cost of insurance for everyone else rises; if healthy people wait until they get sick to buy health insurance (which they would be able to do since current legislation prohibits denying coverage based on preexisting conditions) the whole system collapses.

The policy underpinning every healthcare proposal out there is that everyone has to jump into the pool at the same time or It. Doesn't. Work.

So, to the rest of the nation, I apologize for the stupidity of the elected officials in my state.

Now let's move onto some of the other misinformation that is being promulgated. Briefly:

1. Healthcare reform will increase health care costs and make insurance more expensive. Not so. As reported MediaMatters Action Network, the Congressional Budget Office says that by 2016 annual premiums would be $5,300 for an individual and $15,000 for a family of four under the current legislation; if we do nothing, that family of four will pay an estimated $24,000.

As for increasing healthcare costs, healthcare reform won't do that; the market is doing that on its own. I agree that the current legislation probably doesn't do enough to reign in health care cost increases, but to do that we need to entirely revamp how we pay for medical services and get rid of the outdated fee-for-service program that is responsible for much of the high costs. I hate to use a cliche, but Rome wasn't built in a day. You see how hard it is to simply reform the health insurance part of the system; can you imagine what happens when we start messing with how doctors and other health professionals are paid?

And, for the record, to the best of their ability the Congressional Budget Office estimated this week that the current proposal would reduce the federal deficit more than any of the other proposals that have been floating around for the past year.

2. Healthcare reform will eviscerate Medicare. Ummm, no. It will revise how managed care plans get paid for providing services to Medicare beneficiaries. Under the 2003 Medicare Modernization Act, these plans were given extra payments to convince them to offer Medicare managed care plans, i.e., Medicare Advantage, in the hope that overall savings would more than offset those "sweetener" payments. Turns out that it costs about 13% more to provide care for Medicare Advantage beneficiaries than for those receiving care under the fee-for-service Medicare program. Plus, only about one in five Medicare beneficiaries is even enrolled in such plans, according to the Kaiser Family Foundation. Your basic Medicare beneficiary? Probably won't notice any differences once healthcare reform is implemented.

3. Healthcare reform is government-run health care. Puhleeze! I am so tired of this argument that I almost don't have the energy to tell you why it's so bogus. First, there is no public option--i.e., government-run insurance --in any of the current proposals. It is very, very doubtful one will get in. Second, the insurance companies are the ones still running healthcare. They're the ones who will still tell you what they will and won't cover, and that's an important word: COVER. Whether or not you are required to have health insurance, you are still free to go wherever you want and pay for whatever you want in terms of healthcare services. As for government-run healthcare; see what I have to say about that in this blog post.

I'm going to stop here; I can here myself getting shrill and I need to get to work now. But if you have questions about other "talking points" related to healthcare reform that you'd like me to address, send them on. I promise to tackle them within the next day or two.

Swimming in the Health Insurance Risk Pool

2010-03-09T09:53:00.002-05:00

Gather round boys and girls. Today's lesson is on "risk pools."

Before you pull out your iPhone to ward off the boredom you assume will come, know this: the concept of risk pools is at the heart of today's healthcare reform debate.

To understand risk pools, you first have to understand the basic concept of insurance. Insurance is something you buy in case something happens. The more people buying the same type of insurance, the less risk the insurer faces that it will have to pay out for that aforementioned "something."

So, for instance, if an estimated one out of eight women (about 12%) will get breast cancer in their lifetime, and an insurance company only insures eight women, then it knows, for sure, that one of those women will get breast cancer and it will have to pay large medical claims (in addition to all expenses) from the premiums it collects from just those eight women. So you can bet those eight women are going to pay huge premiums!

Now imagine that same health insurance company insuring 8 million women. Of those 8 million, if 12% get breast cancer that's 960,000 women with breast cancer but more than 7 million without. Suddenly, there is a huge pool of premiums from which to pay those claims, so everyone's claims are relatively low.

Another way of thinking about risk pools is to image putting three drops of green dye into a cup of water. The water will turn a fairly strong shade of green. But put those same three drops into a swimming pool and you wouldn't even have enough green for St. Patrick's Day. You have diluted the dye with that larger pool of water, just as a larger risk pool dilutes an insurer's risk of claims.

Why? Because most people are, bottom line, healthy. The more healthy people in your risk pool, the more money you have available to pay the claims of the sick people.

Which brings us to the current topic in the healthcare reform marathon. Health insurers raising premiums up to 100 percent or more. Most of these premium increases are occurring in the individual insurance market, in which people buy their own health insurance rather than having their employer purchase it for them. This has always been a relatively small market, or risk pool, so premiums have always been relatively high. Premiums have also traditionally been high because people forking out their own money for health insurance are more likely to have a health issue than those who don't.

However, with the recession the market has gotten smaller as healthy people drop their insurance (crossing their fingers that they don't get hit by the proverbial bus tomorrow) to save money. The smaller the pool, the greater the risk, the higher the premium.

Enter healthcare reform. If the current plan (or plans--I've lost track as I'm sure you have) go through and all Americans are required to have coverage in one way or another, then anyone not covered through an employer would be part of one enormous risk pool. We know, for instance, that there are about 35 million Americans out there who haven't even put their toe into the pool; now they'll be able to dive in. That, in turn, should (conceivably) lower premiums for all of us in the independent healthcare pool.

The same goes for employers; if they are required to cover all their employees then, conceivably, their health insurance premium increases should slow given the larger risk pool.

Now, this is a very simplistic way of looking at it and I'm sure someone is going to tell me I got something wrong (and that's ok, I'm ready to listen).

At the very least, however, I hope it's helped you understand why it is so important that everyone take their little cups of water and pour them into one big pool.

your thoughts??

Hot Dogs and Common Sense

2010-02-23T07:53:00.000-05:00

So the American Academy of Pediatrics just came out with a statement that--gasp!--hot dogs (and hard candy, peanuts/nuts, seeds, whole grapes, raw carrots, apples, popcorn, chunks of peanut butter,
marshmallows, chewing gum, and sausages) pose a choking hazard to young children.

Maybe about a dozen children a year die from choking on hot dogs. So the AAP would like hot dog manufacturers to put warning labels on their products and consider changing the wiener's shape so they pose less of a risk to young children.

I honestly do not know where to start.

My oldest child just turned 23 and my youngest just turned 14; maybe I'm too old a mother to understand these pronouncements. But you know what. . .I just don't care. I still have to ask the question that I'm sure will get me flamed:

Are you insane????

When I was a "baby" parent of just 23 myself the rule was. . . common sense. I didn't feed my 1-year-old a hot dog or individual grapes because -- duh! -- they were about the same thickness as his windpipe. Instead, I would dice up the sausage-like meat or fruit into tiny, fingernail sized chunks he could pick up and eat, but couldn't suck down his windpipe. No one told me this; it was just common sense!

I applied the same common sense as my three kids grew up. They never played with nor got near hanging ropes or cords from mini-blinds (and no, I never read the warnings, which didn't even exist when my kids were young); were trained to wear a seat belt in much the same way they learned to put on their underwear before their pants; and knew that homework came first about the same time they learned how to use the remote. Soda as a regular drink? Potato chips as an after-school snack? Failing gym class?

Sorry. Not allowed.

I'm old school; I don't bargain or argue with my kids. I simply give them a choice. .. and both are my choices. As my oldest once told me when I was kvelling about how well he turned out: "You scared me. Fear is a powerful motivator." As my youngest said the other day when we were talking about why his best friend wouldn't be able to come to his birthday party: "His mom is like you; she sticks to what she says when she punishes him."

My point with this discussion? So much about good health relates to common sense. You don't want your kid to die from a hot dog? Either don't feed them to him until he's old enough to chew them up well or dice them up in tiny pieces. You don't want your kid to be 40 pounds overweight in the third grade? Cut out the sugared drinks, junk food, fried food, video games, television watching marathons and sign him/her up for soccer, basketball, baseball, etc. Or should we have labels on television sets and computers warning about the obesity-increasing potential of these appliances? Warning labels on Big Macs, sodas and chocolate cake?

The same philosophy applies to adults. You don't want to spend your adult years going from one doctor to another for your heart disease/diabetes/skin cancers/arthritis/lung disease etc? Do all the commonsense things you know you should do.

Eat right. Exercise regularly. Don't smoke. Use sunscreen.

Do those four things throughout your life and I guarantee you that you will be healthier than more than 70 percent of the current population.

It's just common sense. No labels required.

Visiting the ER WITH Health Insurance and Without

2010-02-17T08:18:00.000-05:00

$2600.
$544.

Look carefully at those two numbers. The first is the sum of three bills I received for my husband's day-after-Christmas visit to the emergency room for unusual dizziness. A CT and EKG ruled out a stroke or heart attack. Diagnosis? Vertigo.

(Note: both figures will likely be much higher once all the bills come in, but I needed a blog post so I'm going with what I've got now).

Now look at the second figure. That's what I have to pay after the discounts my insurance company has negotiated with the hospital and radiologists. Note: there are no payments from the insurance company in there because we had not yet met our deductible. These are just the discounts.

Which points out a really critical issue when it comes to those who have health insurance and those who don't. Merely by having health insurance--even before my insurance company spends a single cent on my medical care--I benefit. I benefit from the administrators who go to the hospitals and doctors and negotiate deep discounts in exchange for funneling more volume (i.e., patients) to their practices (and yes, I know that the doctors and hospitals on the receiving end aren't thrilled about it, but that's a topic for another blog post).

Someone without health insurance, however, likely because they can't afford it, has no such benefit and so winds up paying that first figure--if they can afford it.

(Note to those who are counting: that would be about 35 million American citizens).

A few months ago Congress was close to providing insurance to those people, enabling them to enjoy the same discounts my family does. Today, they're still stuck on the outside looking in. How is this good politics or good policy?

Because what all this talk about healthcare reform really comes down to in the end is the ability to go to the emergency room on the day after Christmas when you're petrified that your husband may have a stroke, receive quality care, and be able to pay for the care you received.

It's really not that complicated.

Your thoughts?

Blame the Genes

2010-02-11T08:06:00.001-05:00

Just heard a news story that researchers have identified three genes responsible for about 9 percent of stuttering. In the story, a woman who stuttered as a child and teenager and who now works with other stutterers was nearly in tears at the news. Her clients, she said, would be so happy to learn that their stuttering "wasn't their fault."

I'm happy for the stutterers of the world. But this story made me think about so many other things related to our health that we try to find an "out" for, something that makes it not our "fault." The more we learn about the contribution of genes to human health, the more stories like the stuttering one we'll hear. The thing is, our genes do not operate in a vacuum. Just because I have a gene or genes that increase my risk of lung cancer doesn't mean I'll get it. But add smoking to the mix--an environmental component--and it's much more likely I'll develop lung cancer as the environmental stress combined with the genetic mutations turn on or off the underlying biochemical processes that trigger cancer growth.

The same could be said for nearly any condition for which a genetic component has been identified. We know, for instance, that some people are just genetically predestined to be heavy. You see it in their families going back generations. The question is, just how heavy? A genetic predisposition towards obesity is not a get-out-of-jail-free card to hit the all-you-can-eat buffet on a regular basis. Instead, it's a warning light that I have to be even more vigilant than my peers in terms of exercise and diet, much like someone with a genetic predisposition towards high cholesterol has to limit saturated fat and other cholesterol-creating foods more so than someone without those genes.

In other words, don't blame the genes. That's like blaming the computer for crashing when you're the one who operated it without virus protection, or blaming the car for crashing when you're the one who drove 30 miles over the speed limit while texting. By all means, learn all you can about your genes--there are even tests you can take at home that will provide information on your risk for hundreds of genetically-linked conditions--but know that risk is only a word. You still, to a large extent, control your medical destiny.

Your thoughts?

The Care and Feeding of a Freelance Medical Writer

2010-02-07T09:19:00.000-05:00

Many have asked me: How can I make sure that my freelance medical writer is happy? For, as any freelance medical writer knows, we can be an ornery lot, arguing over the merits of yellow vs green when highlighting PDF references; Endnote vs RefMan; the true meaning of a P value. Yet, like any high-strung, thoroughbred, given the right care and feeding, your medical writer can be your greatest asset.

To that end, here is my advice on the care and feeding of your freelance medical writer.

1. Be specific in your commands. I just met with a new client about writing needs assessments. Rather than verbally explain things to me (and the other freelancers he uses) he handed me a folder. Inside was a sample needs assessment with his comments as to what worked and what didn't work. He also included a sample letter of agreement and a checklist for identifying potential faculty. It was only my years of training that prevented me from leaping across the table and hugging him.

2. Commit to your training regimen. You know how much it costs to recruit, hire and train a staff employee. I'm always struck by how few clients consider the same costs when recruiting, hiring and training a freelancer. Yes, there are a lot of us out there. But, having hired some freelancers myself, I can tell you the quality varies significantly. So if you find one who is even 75 percent great on that first project, put in the time to bring her/him up to 100 percent rather than setting her loose and calling the next (unknown) freelancer on your list. That means telling your freelancer what worked with the project and what didn't, then giving her/him another project. If the freelancer can't bring it up to 95-100 percent on the second project, then you have my permission to send her/him out to pasture and bring in a fresh recruit.

3. Train your freelancer. You train your staff employees, right? How about a training session for your freelance cadre on such things as your sales module templates; how you prefer referencing be done; how you want performance assessments written? I'm attending a webinar tomorrow that a potential client has arranged on needs assessments for his freelancers. I'm willing to put in an hour of (unpaid) time because I know how valuable it will be--both for this client and for others.

4. Pet and discipline your freelancer. Whether the feedback is positive or negative, send it on. Freelance medical writers have thick skins--we wouldn't last in this business if we didn't. If you weren't happy, don't just write the freelancer off and cross their name of your list, tell him/her, even if you don't plan to use them again. Conversely, if you were happy, send a brief email. I've even received forwarded emails from the client's client--something that means more to me than any check (although payment is always nice). Which brings us to our next recommendation.

5. Feed your freelancer well. As you know, if you've read some of my other blogs, you get what you pay for. So if all you care about is the cheapest price, go for it. Then track how long it takes you to "fix" what you paid for. Quality freelancers with years of experience cost more. They cost more because they have those years of experience (think about it, would they have lasted 10 years if they weren't good?) because they make the investment to keep themselves updated in technology, regulations and rules, because they never stop learning. You might pay a bit more, but I guarantee you, you will save far more on the back end in terms of rewriting and frustration.

6. Feed your freelancer on a regular basis. This is a corollary to the recommendation above; but when you contract with a freelancer for a job, you are also contracting to pay him/her in a timely manner, not when your client pay you! That means within 30-45 days; not 90 days or more.

7. Don't push your freelancer too hard. If you run a 1-year-old filly in four races in four months, you wind up with an injured filly who never wins. The same thing happens when you expect a freelancer to research and write a quality, 2-hour sales module training, complete with annotated references, in 4 days--with no warning. Good freelancers are usually booked several weeks out; and good freelancers know that it takes more than a week to turn around an intensive project like that (one that will sail through legal/regulatory/medical review).

8. Loosen the reins. Freelancers work on their own for many reasons, but everyone I know agrees on one major one: We don't take well to micromanaging. We have no problem providing weekly reports on our progress on long-term projects, etc., but please don't call every afternoon and ask how much writing we got done. Please don't expect us to maintain the same writing schedule as your in-house employees. I know freelancers who work from 3 p.m. to 2 a.m. And I know freelancers who work from 6 a.m. to noon; then again from 5 to 9 p.m. If we commit to a deadline, we'll get it to you, we promise!

These are just a few suggestions from within my own rattled brain. I can promise you that it's worth it to care and feed your freelancer well; it means your projects get pushed to the top of the list, that your freelancer will work nights and weekends and rush projects; that your freelancer becomes part of your team, eventually channeling you and your clients and requiring less and less oversight.

I'd like to hear from other freelancers on their suggestions and, in particular, I'd like to hear from clients about their own issues. I promise another posting later, this time on the Care and Feeding of the Client!

Check, Please!

2010-02-02T08:34:00.000-05:00

A couple of recent news stories reminded me of the dirty little secret about healthcare that no one wants to talk about, the proverbial elephant in the room. All those pills, surgeries, x-rays, medical care? It costs money!

Yes, Virginia, quality medical is not a right, not guaranteed in the Constitution, not something good-hearted corporations and companies, whether for-profit or not, are obliged to hand out like candy corn at Halloween. It costs money. Billions of dollars a day.

This appears to be something we all forgot in the warm fuzzy moments of watching military transport planes fly critically ill people out of Haiti to Florida hospitals. Who was going to pay for all this medical care? For the months of hospitalizations and rehabilitation these people were going to require? When the state of Florida, rightly so, asked the same question, prompting the halting of those military convoys, it ended up on the receiving end of a world-wide outpouring of boos and hisses.

Hey guys, back off. How would you feel if we sent thousands of Haitians to your house assuming that you would just feed and house them out of the goodness of your heart?

Healthcare is no different. Someone has to pay. In the Haitian issue, the federal government finally agreed to pick up the check and the military transports resumed.

Which brings me to the other news event that prompted this blog. President Obama released his FY 2011 budget last night. As you may have heard, he's trying his best to reign in out-of-control budget deficits by freezing most parts of the budget over the next three years that are not related to entitlement programs or defense spending.

Unfortunately, one of the biggest chunks of the federal budget--and, by definition, greatest contributors to the deficit--is pretty much out of his control: Medicare and Medicaid spending, i.e., healthcare spending. According to the Congressional Budget Office: "The federal budget is on an unsustainable path, primarily because of the rising cost of health care and the aging of the U.S. population." Healthcare reform was supposed to at least start to address that; but then Congress got cold feet and 9 months of effort went flying out the window.

So here's what I don't understand. Everyone wants to shrink the deficit, right? And it appears that one of the most important ways to shrink the deficit is to reign in healthcare spending. As the CBO notes: "Addressing health care issues will be crucial to closing the nation’s looming fiscal gap—which is caused to a great extent by rising health care costs . . . If tax revenues as a share of GDP
remain at current levels, additional spending for Medicare, Medicaid, and Social Security will eventually cause future budget deficits to become unsustainable."

But it appears that we are loathe to do the upfront work and pay the upfront costs for healthcare reform that would, economists agree, eventually slow healthcare spending and reduce the deficit. At the rate we're going, the CBO estimates, healthcare spending will make up 25 percent of the GDP by 20205 (in 15 years, people) and 40 percent of GDP by 2050--that's only 40 years away! My youngest will be 54! (Of course, I'll still be 32, but that's a topic for another blog).

Now, I'm not the greatest at math, but even to me this makes no sense. The reality, people, is that someone, somewhere, always has to pick up the check. Will it be us or will it be our kids and their kids??

Your thoughts?

The Future of CME

2010-01-29T13:39:00.001-05:00

So I’m sitting in a large ballroom in a hotel in New Orleans listening to a plenary speaker at the Alliance for Continuing Medical Education meeting (ACME). The topic? Hot Topics in CME.

An aside: for those of you who follow me who don’t know, CME is continuing medical education, the ongoing learning that all medical professionals must complete on an annual basis to maintain their certification. It’s a huge, multimillion dollar industry and it has come under withering scrutiny in recent years for its reliance on industry (read: pharmaceutical) support and the potential for bias that introduces into the process.

Full disclosure: a significant part of my work comes from companies applying for grants to put on CME-accredited activities or from companies putting on CME activities. From what I understand, in the “old” days of CME funders did have tremendous influence; a man I talked to last night at the wine-and-cheese gathering recalled the days 15 years ago when CME funding came from the marketing department of pharmaceutical companies.

Today, however, there are thick firewalls between commercial supporters and CME programs. The funding comes out of medical education departments separated from marketing. Once the money changes hands, the commercial supporter has no influence over the program. They cannot recommend faculty, review outlines or content – nothing. Yes, they set the topic, i.e., Improving Diabetes Care in Primary Care – but that’s it.

A big part of what I do is writing needs assessments, a document that identifies gaps in the quality of care provided, gaps between “what should be” and “what is.” After three years and more than 50 needs assessments in a variety of therapeutic areas, I can definitely say that the need for CME has never been stronger.

As one speaker said during the meeting: Medicine used to be a relatively benign profession; you couldn’t do much good but you also couldn’t do much harm. That is no longer the case. Today, medicine is so complex and fast moving that there is no way anyone can practice based simply on experience and old knowledge. Today the focus is on evidence-based medicine, delivering care based on best practices as shown in quality clinical studies.

And yet there is a significant gap in the percentage of healthcare delivered based on the evidence. Most doctors simply don’t do it.

So to those who have told me over the years that CME is dying and “going away,” I have to, in the politest way possible, tell them they are full of hooey. Never before has CME been more needed. What will happen, I am sure (particularly after listening to this plenary session and attending other sessions here) is that CME will change. There may be less industry funding or, my prediction, less direct industry funding. In other words, pharma companies will pool their medical education budgets and allow the funds to be dispersed by an independent panel based on the practice gaps and educational needs identified through the needs assessment process.

There will be more point-of-care learning, more interactive and fewer didactic learning programs, and more focused learning.

But, with apologies to Mark Twain, reports of CME's death are greatly exaggerated.

Back Away from the Quacks!

2010-01-26T07:58:00.001-05:00

So my cousin emailed me the other night. She had a breast cancer recurrence about 6 years ago. Before you feel too sorry for her, however, know this: She's doing great, moving from one targeted treatment/chemotherapy/laser knife procedure to another. Her doctors are fabulous. Her attitude is amazing. And, as she constantly tells us, she feels great and is loving life. No, this isn't about her. It's about her friend, the one she emailed me about.

Her friend was diagnosed with an early stage of an aggressive form of non-small cell lung cancer a year ago. After chemotherapy, a CT scan this summer showed her lungs clear of cancer; but a followup CT scan last week showed some spots. This woman had participated in a clinical trial during her first round of treatment and her doctor wanted her to join another clinical trial. But my cousin's friend is freaked out; she doesn't want to feel like a "guinea pig." So when her daughter suggested she see a doctor who specializes in an unproven and experimental therapy called insulin potentiation therapy, she was ready to call for an appointment.

"What do you know about this?" asked my cousin, who, despite my missing medical degree, has been turning to me for medical information for years.

A quick Internet and PubMed search showed it was quackery at its best. Its proponents bill the treatment as "low-dose chemotherapy" with no risk of nausea, hair loss, or other icky side effects of traditional chemo. One web site calls it a "kinder, gentler way to fight cancer effectively, including particularly aggressive cancers such as lung cancer and colon cancer." The key, say proponents, is using your own insulin to cure your cancer. They reduce blood glucose levels prior to administering the chemo, then administer chemo and glucose in quick succession, relying on insulin to carry it into cancer cells which insulin "opens" to the glucose.

I'm not going to get into the debunking here. . . I think Sloan Kettering and the ACS do it quite well.

My concern rests not only with this woman's eagerness to embrace the alternative as "better" than proven therapies, but with her reluctance to join a clinical trial. The National Cancer Institute reports that less than 5 percent of adult cancer patients join clinical trials, even fewer older adults. The reasons are numerous, but one of the main reasons comes down to cancer patients wanting to choose their own treatment.

Based on my cousin's question -- "When you are in a clinical trial, do half the participants get a placebo?"--I'd say ignorance is another reason (no, I told her; the new therapy is tested against the current therapeutic standard).

My cousin has been dealing with metastatic cancer for four years and it's apparent that her doctor never explained how clinical trials work when, I know, it is quite likely she will need to join one at some point.

Which brings up another major reason patients don't join clinical trials: Their doctors don't tell them about the trials. One 2000 Harris Interactive poll found that 80 percent of cancer patients didn't know clinical trials were an option for them, yet 76 percent said if they'd known, they would been "somewhat or very receptive to participate" Unfortunately, the poll also found that of the patients who did know about the trials, 71 percent chose not to participate, primarily because of misconceptions like my cousin's and her friend's that they would be guinea pigs and get a placebo. Other research confirms physician reluctance to enroll patients in trials.

I recall attending the American Urological Association annual meeting a couple of years ago and listening to some of the leading reseachers in prostate cancer research list the number of clinical trials that had to be closed because they simply couldn't get enough patients to participate.

The point is this: My cousin has lived for four years with metastatic breast cancer, a length of time that would have been unheard of just a decade ago. Her life is the result of dozens of clinical of trials and the thousands of women willing to participate in them that brought new and novel therapies to market, the very therapies keeping her alive today.

If more people don't start volunteering for more trials, what's going to keep tomorrow's metastatic cancer patient alive? Certainly not insulin potentiation therapy!

Let me hear your thoughts on the topic. . .

Focus People!

2010-01-20T07:55:00.000-05:00

Ok, yes, the Democrats just lost their filibuster-proof majority. Politics, politics, politics.

Can we please focus on what's really important here, people, which is not seeing who can pee further. It is providing health insurance for more than 35 million people and taking the first baby steps towards fixing our mess-of-a-healthcare system.

One statistic and then I'll stop ranting: An estimated 17,000 children in the United States might have died unnecessarily over nearly two decades because they didn't have health insurance, according to a report from researchers at Johns Hopkins Children's Center in Baltimore.

Ok, now you Senators can start peeing again.

Ode to Death Panels?

2010-01-18T10:25:00.000-05:00

Back in the day when I was a newspaper reporter I completed a biomedical ethics fellowship at the University of Virginia Medical Center in Charlottesville, VA. In addition to sitting in on the hospital's bioethics committee discussions, I spent much of the week shadowing a nurse in the ICU.

They called her the Death Nurse because her job was to intervene with doctors, nurses, patients and families when the time came for a patient to move from the ICU to hospice. While her title was Supportive Care, she flat out told her me her job was to help people die; not actively, but from behind the scenes by helping patients and those caring for them understand when the time had come to move from curative care to supportive care (email me if you'd like a copy of the article I wrote about her).

When I asked why her job was necessary, she told me it was because it was so hard for doctors, nurses, patients and even families to face the reality of death. Her thoughts were echoed by a doctor there who was completing a critical care fellowship: ``A lot of us don't know what to say because we're so uncomfortable with death,'' he told me. "When someone who is not part of the team says this is ridiculous, it's time to stop, we listen.''

I bring this up because I completed that fellowship 13 years ago. One would hope that things had changed since then, that more openness and discussions about end-of-life care would have moved us towards a recognition that sometimes death is not a failure, but a success. Unfortunately, however, that doesn't appear to be the case. Last week, a study published in the online edition of the journal Cancer on the results of a national survey of physicians caring for cancer patients found that most doctors aid they would "not discuss end-of-life options with terminally ill patients who are feeling well, and instead would wait for symptoms or until there are no more treatments to offer."

Why? Why not talk to your patients about how they want to die, just as you talk to them about how they want to live, how they want to address their disease? Why not talk to them about how you will manage their pain and keep them comfortable as death approaches? How you hope this will give them and their families time to reach closure in their personal and financial relationships. Give them time to come to terms with this next stage of their life.

These are not easy discussions to have. They take time and, for many doctors, additional training. Earlier versions of the healthcare reform bills now pending would have provided reimbursement under Medicare for doctors who had such discussions with their patients; but, of course, cries of "death panels" doomed that component.

So, I ask you, what is the answer? How do we learn to talk about death with one another, to stop fearing it, to understand that there is no way of avoiding it, and to accept that a death we have some control over will generally be a much better death than one that sneaks up on us?

Let me hear your comments.

10 Surprising Things In Healthcare Reform (Senate version) Part 2

2010-01-06T14:06:00.000-05:00

So sorry for the delay in getting you Part 2 of my health care reform article (and if you're wondering where Part 1 is, it's here). Every now and again I actually have to do some work that pays the bills.

But here you go with the final six surprising things in the Senate version of healthcare reform. So those of you who have barricaded yourselves in the bathroom and gone on a hunger strike awaiting my next post can now emerge.

(full disclosure: My source for this is a fabulous side-by-side comparison of the Senate and House versions from the Kaiser Family Foundation).

5. Require chain restaurants and food sold from vending machines to disclose the nutritional content of each item.
In English: We're going to know how many calories and how much fat, salt, and sugar are in the foods we adore (i.e., all those foods that are bad for us). A great article in today's Washington Post covers this in more detail, including the fact that when restaurants display (or have to display) nutritional content, not only do they offer healthier, lower-calorie choices, but people choose such foods more often.

6. Simplify health insurance administration by adopting a single set of operating rules for eligibility verification and claims status, electronic funds transfers and health care payment and remittance, health claims or equivalent encounter information, enrollment and disenrollment in a health plan, health plan premium payments, and referral certification and authorization.

In English: All health insurers will use the same forms and requirements for all major components of health insurance. So the rules won't change even if you change insurance companies. This should reduce administrative costs not only for insurers, but for healthcare professionals, as well, since their office staffs won't have to remember, follow and use 30 different sets of rules and forms.

7. Create an Innovation Center within the Centers for Medicare and Medicaid Services to test, evaluate, and expand in Medicare, Medicaid, and CHIP different payment structures and methodologies to reduce program expenditures while maintaining or improving quality of care.

Also: Establish a national Medicare pilot program to develop and evaluate paying a bundled payment for acute, inpatient hospital services, physician services, outpatient hospital services, and post-acute care services for an episode of care that begins three days prior to a hospitalization and spans 30 days following discharge.

In English. This is a biggie: This is a major admission by the government that we need a new way of paying for healthcare. The traditional fee-for-service model (i.e., you get paid for what you do) just isn't cutting it anymore. The more doctors do, the more they earn. Yet there is no financial incentive for keeping patients well. Although this rule applies to government healthcare programs, we all know that whither Medicare goes, the rest of the insurance industry follows.

8. Reduce Medicare payments that would otherwise be made to hospitals by specified percentages to account for excess (preventable) hospital readmissions and reduce Medicare payments to certain hospitals for hospital-acquired conditions by 1%.

In English: This is basically saying to hospitals: Clean up your act and do the things we know you should be doing to prevent readmissions and hospital-acquired infections and other problems because we're not going to pay you. So if you discharge a patient who was hospitalized with heart failure without making sure the patient has a prescription for certain medications and a follow-up appointment with a community doctor, among other recommendations, and that patient winds up back in the hospital within 30 days, plan to eat the cost. Medicare has been doing this to a certain extent already for certain diagnoses, prompting hospitals to reexamine and redevelop existing systems designed to improve care.

9. Create the Independence at Home demonstration program to provide high-need Medicare beneficiaries with primary care services in their home and allow participating teams of health professionals to share in any savings if they reduce preventable hospitalizations, prevent hospital
readmissions, improve health outcomes, improve the efficiency of care, reduce the cost of health care services, and achieve patient satisfaction.

In English: No one wants to go into a nursing home; yet neither Medicare nor most state Medicaid programs support programs that help people remain in their homes as they age or when they have significant disabilities. This demonstration program is a step in that direction. It key component is the word "team" and the incentive for preventive services to reduce acute care and improve overall care.

10. Establish the National Prevention, Health Promotion and Public Health Council to coordinate federal prevention, wellness, and public health activities. Develop a national strategy to improve the nation’s health. Create a Prevention and Public Health Fund to expand and sustain funding for prevention and public health programs. Create task forces on Preventive Services and Community Preventive Services to develop, update, and disseminate evidenced-based recommendations
on the use of clinical and community prevention services.

In English: We're going to get serious about prevention, people. One major study estimated that if everyone adopted scientifically tested and accepted prevention activities, we could prevent 63 percent of the heart attacks that will occur in today's adults if we continue at the same rate of prevention. We would also slash the cost of care for people with cardiovascular disease, diabetes, and coronary heart disease over the next 30 years by 10 percent, or $904 billion.

We're not talking rocket science here, people, but relatively simple steps like exercise, a healthy diet, quitting smoking, and losing weight.

These 10 items are just the tip of the proverbial healthcare reform iceberg. So tonight, when you can't sleep, how about a little light reading of this $871 billion, 2,074-page behemoth?

Your thoughts??

Medical Writing in 2010: Resolutions

2010-01-02T08:42:00.001-05:00

I'm sure you're all sick of reading predictions and resolutions. Well, too bad. You're going to read one more.

I've been thinking a lot about what the next year will bring. It's my 11th year as an independent (read: freelance) medical writer, a major milestone in my book. I've gone from writing $50 newsletter articles to authoring entire books. From shying away from scientific writing like CME and journal articles to getting to the point where they make up the bulk of my business. So what do I plan in the next 365 days?

1. To continue to organize my marketing efforts with the help of my virtual assistant (thanks, Katy!). This includes the database she's established, this blog, quarterly email newsletters, following up with potential clients on a regular basis and delving deeper into Linked In and the potential it holds for business development.

2. To develop a book proposal on my own for my own book, no coauthors. Idea is there; just need to write the proposal!

3. To market myself as a speaker at professional meetings on writing, freelancing and medical communcations.

4. To expand the part of my business related to meeting coverage. I LOVE covering medical meetings; must be the former reporter in me.

5. To investigate whether I should develop writing classes for corporations. I'm continually dismayed by the poor writing quality I see.

6. To redecorate my office. This might seem like a pretty selfish thing to do and like something that has nothing to do with my business, but given that I spend upwards of 10 hours a day in that room, the environment is critical to my productivity and mental health. I've had the same desk, paint color and design for 10 years how. It's time for an update.

7. To take at least one day off each weekend. I know, I know. Those of you who read my blog about working weekends and those of you who know me personally are rolling on the floor right now laughing, but I'm serious, damn it!

8. To be more vigilant about reading contracts and insuring that there is language in there regarding timely payment. If you've read my blogs on this issue, you'll understand why.

9. To stretch in one new direction. Although I'm passionate about health policy, I haven't marketed myself as a writer in that arena much. So that's where I'll look.

10. To continue to learn. I've signed up for the AMWA scientific certificate, in which I'll take a series of workshops on various medical topics, such as the cardiovascular system and immunology. The first one I completed was on cancer biology--fascinating!

10. To continue to recognize how incredibly lucky I am to be able to own my own business doing something I love that provides such a huge variety of interesting work.

10 Surprising Things In Healthcare Reform (Senate version) Part 1

2009-12-31T10:16:00.001-05:00

I promised in an earlier blog to list 10 things in the Senate version of the healthcare reform bill that you might not be aware of. Since it's New Year's Eve, technically a holiday, I'm only working at partial speed so you only get a partial list today. More to come over the next few days.

1. Support comparative effectiveness research by establishing a non-profit Patient-Centered Outcomes Research Institute to identify research priorities and conduct research that compares the clinical effectiveness of medical treatments.

In English: The government will fund research to directly compare treatment A to treatment B to determine which works best and is most cost effective.

Major weakness: the Senate bill specifically notes that the results of such research "may not be construed" as mandates, guidelines, or recommendations for payment, coverage, or treatment or used to deny coverage.

Huh? What is the point of finding out that treatment A works better than treatment B if you don't use it to make coverage decisions???

Prediction: Most insurers will use this information to make coverage decisions, much to the chagrin of many pharmaceutical and medical device companies. In the not-too-distant-future, Medicare will join the party. After all, the eventual goal of all this is to improve quality and reduce costs, isn't it?

2. Award five-year demonstration grants to states to develop, implement, and evaluate alternatives to current tort litigation. Preference will be given to states that have developed alternatives in consultation with relevant stakeholders and that have proposals that are likely to enhance patient safety by reducing medical errors and adverse events and are likely to improve access to liability insurance.

In English: The feds will give money to states to explore ways to get doctors to stop practicing defensive medicine so we can bring down malpractice insurance premiums and reduce litigation. You get more money if your proposal also focuses on ways to reduce medical errors (think: cutting off the wrong leg) and make it easier for docs to get malpractice insurance.

This is really important, because despite improved attention to the problem of medical errors over the past decade, we haven't made all that much progress. And, as noted in an earlier blog, a huge number of ordered tests are unnecessary.

Prediction: We may finally be on our way to the tort reform we need in the healthcare system.

3. Develop a national quality improvement strategy that includes priorities to improve the delivery of health care services, patient health outcomes, and population health. Create processes for the development of quality measures involving input from multiple stakeholders and for selecting quality measures to be used in reporting to and payment under federal health programs.

In English. We're going to tackle the quality issues within the healthcare system that Josh referred to in his comment. It is shameful that despite spending more per capita than any other country on healthcare, we are less than average in several key indicators.

4. Establish a grant program to support the delivery of evidence-based and community-based prevention and wellness services aimed at strengthening prevention activities, reducing chronic disease rates and addressing health disparities, especially in rural and frontier areas.

In English. This and other components of the bill, including grants to small businesses that implement wellness programs and a requirement that all chain and fast food restaurants post nutritional information about their menu items, begins to get at another major problem in our country and healthcare system: Lifestyle-related illnesses like diabetes and heart disease, and the lack of incentive for physicians to push prevention.

Prediction: The pendulum is swinging away from self indulgence towards restraint on fiscal terms in this country; maybe we'll start seeing the same when it comes to our personal health.

Tomorrow: Six More Surprising Components of Healthcare Reform

They Did It!!

2009-12-28T10:16:00.001-05:00

So President Obama, the Democrats, and, yes, the American people got their much-awaited Christmas gift--healthcare insurance reform. Oh, sure, the Senate bill has to be reconciled with the House bill, but I'll bet you my weekly copy of JAMA that's a no brainer.

So now (or next Monday when the world returns to work) we can expect a slew of criticism and predictions of doom from people unhappy with the bill as passed. I want to head off some of this at the pass by saying this: No, the bill is not perfect. No, the bill will not reform the healthcare system. No, the bill will not save billions of dollars and reduce the amount of GDP (currently at 17 percent) that our country spends on healthcare.

But, as a wise friend once told me, perfect is the enemy of good.

The reality is that the Senate bill is a first step on a very long journey to contain our out-of-control health system. There will be many more such steps before we even get close to stuffing this evil genie back into the bottle. Why? Because we have allowed our system to become the kudzu of our culture. For those who aren't of Southern roots, kudzu is an evil vine that grows about a mile a day and, left unchecked, can smother a small town within a month. Health care in the United States is pretty much the same. I've often compared it to a closed toothpaste tube: you squeeze out some savings at one end and they just pop up somewhere else.

Plus, as with any huge system, once you start messing with it there will be unexpected results. For instance, when Massachusetts required that all its residents have health insurance, it didn't expect the significant shortage in primary care physicians that resulted as millions of newly insured people rushed to the doctor's office. Expect similar unintended consequences as we begin manipulating our current healthcare system.

In the meantime, though, we have the first, all important step.

On the plus side, the Senate bill (and, likely, any reconciled bill):

Mandates healthcare coverage for most Americans and provides subsidies/low-cost options for such coverage to people who can't afford to purchase health insurance at full cost
Prohibits health insurance companies from discriminating on the basis of preexisting conditions (see my blog about this)
Prevents health insurance companies from cancelling your coverage when you get sick

These are just the headlines. I've been reading the excellent summary of the bill that the Kaiser Family Foundation provides and, in upcoming blog posts, will be addressing several of the less publicized components of the plan.

For now, though, I'm opening my bottle of champagne early.

Why You Should Ration Your Healthcare

2009-12-19T10:47:00.001-05:00

A few months ago my 72-year-old mother told me she was having a CT scan because she had a lot of back pain. Her doctor thought it was a bulging disc. Given her age, it was most likely related to degenerative disc disease, i.e., old age. He had already prescribed physical therapy and some anti-inflammatories.

So why, I asked her, are you having a CT scan? How would your doctor's treatment plan change based on what the CT shows? Are you going to have surgery? Take stronger drugs?

She couldn't answer. She couldn't answer because she never asked the questions. Just as she never asks her doctors why they prescribe one medication over another, or why they recommend knee arthroscopy for her aching joint (which studies find no more effective than conservative medical treatment) instead of knee replacement (which studies find extremely effective both from a medical and a cost perspective because it keeps keep older people active, reducing the risk of additional medical problems and improving their quality of life).

Now, this is not to pick on my mother (who, since she reads this blog, is probably preparing to cancel her upcoming trip to see me). It's to point out a major problem with too many people in this country, particularly those, ahem, of a certain age (read: Medicare beneficiaries).

Like my mother, they were raised during a time in which you never questioned your doctor. When he (and most doctors of the time were men) said swallow these pills, you said "how many?" When he said you need surgery, you said "when?" When he sent you for x-rays, CT scan, MRI -- you went. Why worry about it when you had good health insurance and your out of pocket expenses were just a few dollars. After all, these are just tests, they're not going to hurt you, are they?

Well, yes.

In fact, the release of two major studies this week showed just how much they can hurt you. Both were published in the Archives of Internal Medicine and both looked the contribution of CT scans--those seemingly benign fancy x-rays that provide your doctors with three-dimensional images of parts of your body--to cancer. We like these scans; last year, Americans received 70 million of them!

The result?

CT scans performed in 2007 will be responsible for an additional 29,000 cancers and 15,000 cancer-related deaths.
The younger you are when you get a scan, the greater your risk of developing cancer from it. For instance, a 40-year-old woman has a one-in-270 risk of developing cancer from a coronary angiogram (a test to evaluate coronary artery blockages that exposes you to as much radiation as 309 chest x-rays), while 20-year-old woman has a one-in-150 chance.
Radiation dosages from CTs vary widely among hospitals, even for the same type of scan.
Patients are exposed to radiation dosages that are, on average, four times higher than necessary.

What does this mean for you? It means that, unlike my mother, you should not blindly head to the radiology department whenever your doctor hands you a prescription for a CT (or MRI or any other test). Nor should you take yourself to those freestanding centers that offer full-body CTs.

Even if the test itself doesn't carry any risk, it still costs money. Or could lead to unnecessary biopsies and worries. Or could identify something that, if you hadn't known was there, wouldn't have killed you but will now subject you to treatments that could.

This is not to say that imaging tests aren't necessary. They are a very important part of good medical care. However, researchers estimate that at least a third of all CTs are unnecessary. Plus, as an editorial in the same issue of the Archives pointed out, a GAO report on medical imaging found significant differences in expenditures on medical imaging between states, with no evidence that people getting more scans fared better medically than those getting fewer. Another study found that nearly four out of 10 scans ordered for heart conditions were inappropriate or, most likely, not needed.

So the next time you think about asking for a CT, or your doctor wants you to get one, ask the question: "Why?" Will it change the treatment plan? Are there other diagnostic options? What are you looking for?

If you and your doctor decide that yes, you do need the scan, when you get to the radiology department ask those same questions. Turns out that doctors often order one test when another would work much better at delivering the information they need--possibly with less risk.

This is the kind of thing that managed care used to do back in the heyday of HMOs. Doctor ordered an MRI or CT scan? They usually had to get authorization from a nurse or other medical professional first. Back then, of course, everyone screamed about rationing. So the practice, like most that managed care instituted to reign in runaway costs, went the way of the horse and buggy.

Rationing? Maybe. But wouldn't you rather be refused a CT scan today than get a scan-related cancer tomorrow?

Making a List and Checking it Twice. . .

2009-12-14T17:53:00.001-05:00

No, I'm not Santa but I'm still making a list. Unlike Santa's list, this one only includes those who have been naughty. Specifically, companies that use freelance medical writers but do not pay within a timely manner (i.e., 45 days from invoicing); do not pay at all; or significantly change the scope of the project but balk (or walk away) when the writer tries to change the scope of the fee.

This list was triggered by a Tweet from someone about Time Inc., and NBC charging freelancers a percentage of their fee if they want to be paid in a timely manner. Imagine that. If you want to be paid within a month or so, you have to agree to give up 4% or so of the money owed you.

There is just so much wrong with that thinking I don't even know where to start. My outrage might be the result, in part, of my own payment woes. As I wrote in an earlier post, I have a client who just informed me they are paying at 90 days or later and there is nothing I can do about it. The reason they are paying me so late? Because their client has not paid them!

Well, now I have something I can do. I'm putting them on the List.

So the next time they call a freelancer (as they called me last week) and ask the writer to take on a rush job, the freelancer will know that this is a client that takes forever to pay--and will ask for 50% of the project up front, overnight or wired into their checking account--before writing a single word.

I posted word of the "list" on the American Medical Writers' Association listserve and immediately several writers emailed me their own stories of woe. I also invited writers to email me directly to find out the name of my own late-paying client -- about 15 did (15 of some of the best writers out there).

Now, let me say that I've been freelancing for 10 years and I've rarely had trouble getting paid. In fact, this is the first year I've ever faced this problem in any significant way. I know the economy is a mess, I know times are tough. What I don't understand is why a company would alienate a vendor they need. After all, if they can't find a good writer to turn out quality work (including those rush jobs), how will they meet the needs of their own clients? Is it worth the extra percent or two in interest to alienate a writer who has learned your system, worked well with your staff, and turned in good work that pleased your client? How much more will it cost you to start all over again with another writer?

I'm trying to understand, I really am, but I just don't get it.

So I'm making a list; a list I will make available to other medical freelancers.

Have a late-paying client story to share (from within the past 2 years only)? Email me directly at debra.gordon9@gmail.com. Your name will be kept confidential; only your late-paying client will be added to the list.

The TRUE Cost of Health Care

2009-12-09T08:30:00.001-05:00

Three years ago, my husband left his perfectly secure job (read: with benefits) and became a full-time consultant for his old company (read: without benefits) so we could have a much nicer lifestyle in Williamsburg, Va than we did in the small Pennsylvania town in which we'd lived for nine years (no offense to Pennsylvanians, but I'm a Virginia born-and-bred gal and I needed to get back to the Commonwealth, where the daffodils bloom in February and we can wear flip flops before June).

Needless to say, we lost the benefits (read: employer-provided health insurance) that had allowed me to go out on my own as a freelance medical writer seven years before.

No problem, I thought. I'm a healthcare expert. Heck, I once managed the provider relations department for a mid-sized managed care company, contracting with doctors and convincing them that they hated our HMO less than the other HMOs in the area (I was pretty darn good at it, too). I'll just go out and find us some health insurance.

I started on the individual market. For my sons and husband, who had never had a serious health problem, the premiums weren't too bad: about $350 a month for all three. But for me--who had been diagnosed with clinical depression many years back and still took medication to control (note the word 'control") it--my premium for catastrophic coverage ONLY would be more than $900 a month.

Ahem.

I. Don't. Think. So.

Luckily (and I say that with my tongue planted firmly in my cheek) I formed a corporation when we moved here. So we were able to find health insurance as a small business since we had two (i.e., my husband and I) employees. Oh joy! For a monthly premium of $675 we purchased two high-deductible policies, one for me and one kid; one for him and one kid.

Note the words "high deductible." With the exception of preventive care like regular checkups, immunizations, mammograms, etc., each of the two people on either plan had to meet individual deductibles of $2400 before either of us got first dollar coverage. Oh, and every January the deductible clock reset.

In real terms it meant that barring some serious accident or illness that landed us in the hospital, we'd be paying out of pocket for all our medical expenses. That could be as much as $5800 for each policy, in addition to the $8100 a year we were paying in premiums. Oh, and don't forget the 20 percent we'd owe even after meeting our deductibles.

The benefit of this high-deductible plan? Our premiums were actually lower than if we'd chosen a plan with a lower deductible. And, of course, we could sock away several thousand dollars tax free to cover those out-of-pocket medical expenses--assuming, of course, that we had extra thousands of dollars just lying around collecting dust (doesn't everyone?).

There was one other "advantage" to this plan, however. After nearly 25 years of employer-paid health insurance, I'd actually get to see what things cost, something that few people with health insurance ever do. I mean, think about it. When you go to the doctor you pay a copay or, maybe, a small deductible. particularly when you pay for drugs.

Like Alice, I was about to go through the rabbit hole. Only instead of the White Rabbit, Mad Hatter and Cheshire Cat, I was about to encounter--gasp!--the real cost of healthcare.

I'll never forget the first time I had my migraine medication refilled under the new plan.

At the time, there were no generic medications and a single prescription came 8 pills to the pack. When the clerk at the pharmacy asked me, with real concern in her voice, if I knew how much the refill would cost, I thought she'd tell me $50 or so.

Nope.

$280. $35 a pill.

I nearly fell to the ground. From then on, my husband and I had a pact; whoever went to the doctor always asked for samples of the medication. And every time I got a migraine, I actually considered whether the pain was bad enough to warrant the $35.

I was actually lucky; my health insurer had negotiated the $280 cost with whatever middleman supplied the drugs to the pharmacy. Otherwise, my cost would have been higher. Same thing with doctor visits and tests. I saw this on every bill in which the provider posted the charges and then the "negotiated" rate. Sure I was out of pocket hundreds of dollars; but without that negotiated rate, courtesy of my health insurance, I would have been out of pocket thousands of dollars.

The result? I thought about whether the healthcare service I was about to consumer was something I wanted (sure it would be nice to have the doctor confirm that my cough was the result of nasal drip but did I really want to spend the $45 for the office visit?) or need (I think I have strep and need antibiotics).

All of which is a long-winded way of pointing out one extremely dsyfunctional part of our healthcare system: We, the consumers, don't know what anything costs! Can you imagine driving up to a gas station for a gallon of gas and not knowing the price until after you pumped the gas? Even then, your cost would depend on what kind of car you drove. And, if it were a really nice car, you'd only have to pay a percentage of that cost.

Everyone talks about the cost of healthcare; but most of those consuming it have no idea what anything costs, rarely have to pay the actual costs, and get most of the costs--including those of our health insurance--covered by others.

Ergo, we demand every service we can get--cost be damned.

Until the system can provide some transparency (and I'm thinking bar codes and price stickers on everything from a Pap smear to an emergency room visit) not to mention transitioning more of those costs to us, the patients, there is NO WAY we will be able to make even the tiniest dent in skyrocketing costs.

Your thoughts?

Working on the Weekend

2009-12-07T08:28:00.000-05:00

How was your weekend? Get a lot of Christmas shopping done? Clean your house? Spend some quality time with the kids?

I spent my weekend working, trying to get a jump on a book I'm writing for two doctors.

And that's ok.

In fact, that's one thing I always tell "newbies" (people who are thinking about or who have just decided to go into freelance medical writing who ask me for my trade secrets). Looking for a 9 to 5 work schedule? Fuggedaboudit!

When you're a freelancer you are also a business owner. And your business doesn't stop at 5 p.m., especially in these days of 24/7 access. That means being available to your clients, current and potential, around the clock at least to the point of responding to emails in a timely manner, even emails that come in on a Saturday.

I've been freelancing for 10 years now and I can count on two hands the number of full weekends I've taken off (defined as not sitting in front of my computer for anything other than e-mail checks). I work during vacations, I work while traveling, I work at night.

This might sound like I'm working 60 or 70 hours a week. But no, when I run reports from my time-tracking software the results always average out over a year to about 30 hours a week.

Why then, you might be asking, do I work beyond "normal" work hours?

First, consider those 30 hours. They are not spent eating lunch, talking at the water cooler (i.e., email listserves, Facebook, Twitter), going to the bathroom, playing spider solitaire (a major weakness) or kibitzing online. When I do any of those things, I punch out, something people in an office don't do.

Second, one of the advantages of freelancing is setting your own schedule. So while I'm typically at my desk by 7:30 a.m., I also take a break in the late morning to work out at the gym and I take a nap--yes, you hear right, a nap-- nearly every day around 1 or 2 (to all clients who have tried to schedule meetings with me during the early afternoon, now you understand! :-) I promise more on the restorative nature of naps in a future post.

I often have to drive a kid to soccer or piano in the late afternoon, hit the store for dinner, or, and this pains me to admit it, head to my massage therapy for my biweekly deep tissue therapy on the mouse arm/shoulder/back (a hazard of long-term freelancing).

So I don't mind the evenings I head back to the office after dinner to draft an article or research a project. Or the Saturday or Sundays I spend uninterrupted hours digging deep into some complicated assignment. It always amazes me how much "quieter" the office seems on weekend without a constant flow of emails and how much more efficient I am!

I'm often asked how I separate home life from work life given that I work at home. My answer is always the same: I don't. Personally, I like the merging of boundaries. I like that my kids (when they were younger) came into my office to do homework. That they always know where to find me. That if there is a snow day or a sick day or an after-school event that they need a ride home from I can manage it. I particularly like it now that I have two teenagers at home (17- and 13-year-old boys) and know that they never come home to an empty house (my mother worked out of the house and I know what I did in those dangerous after-school hours). Want to have a bunch of friends over on a school holiday? No problem. I'm always here.

My kids (including the 22-year-old) have grown up watching me work, understanding the value of hard work, and seeing what it takes--literally--to be successful.

So yes, I worked this weekend. And, to be honest, I wouldn't have traded it for the world.

So, what are your thoughts of weekend work and work/life boundaries?

(image courtesy of Flickr photos)

Ode to a Copy Editor

2009-12-02T17:01:00.001-05:00

The heavens must be aligned today because I've been reminded twice in the past few hours of the importance of copy editors.

For those who don't know what a copy editor is let me just say this: A good copy editor is to a piece of writing what the Secret Service is to the President: protection of the most profound type. She (and most are women) stands between excellent writing and disaster. She is the one who asks if you really meant to say that direct medical costs for asthma in the United States are $11 million a year, or $11 billion a year (the latter). She is the one who realizes you skipped a reference and now none of your endnotes are in the right place. She is the one who knows that you really mean to write multiple sclerosis, not muscular dystrophy.

Bottom line, she is the one who can see the trees in the forest when the writer can barely even see the forest anymore.

For no matter how many times a writer edits a piece, even, as I do, printing it out and doing a final edit on hard copy or, as my friend Alisa does, reading it out loud, a copy editor will improve our work every time.

It took me many years to come to that realization. When I was a young know-it-all newspaper reporter at my first job and the copy desk called at night with questions, I took it personally, certain that I must be terrible at my job if they found even a single mistake. Sometimes I even hid from their phone calls (this was in the days before cell phones) but since the all reporters hung out at the same bar, they always found me.

Today I just wish I had enough money and time to send everything I write for every client (and this blog) through a copy editor before hitting “send.” These incredibly anal, unbelievably organized, astoundingly exacting professionals who carry four or five style guides in their heads and can debate endlessly about the appropriate use of conjunctives and adverbs have saved my butt countless times over the past 25 years. They are my heroes.

But copy editors, like good writing, are becoming a somewhat endangered species. They're often the first to go during layoffs at newspapers and magazines (as you probably know if you count the errors in the headlines and copy these days). Book publishers often pay so little that the only editors they can find are newbies who wouldn't know an editing mark if it bit them on the red pen. And web sites. . . don't even get me started.

Angela Hoy, who owns a print-on-demand publishing company and whose weekly newsletter on freelancing/writing I've been reading for nearly 10 years, covered the topic beautifully this week. She specifically took aim at the so-called "content" aggregators that pay pennies to writers to produce content they can sell to other sites. A couple of her examples from the headlines alone: Loosing Weight the Way Nature Intended and My Daughters Severe Nut Allergy.

My favorite example of the need for copy editors, however, was the marked-up memo from the Toronto Star about, of course, how the newspaper no longer needs its own copy editors!

I always know the client I'm working with is a true professional when she has a copy editor standing by for my copy. The ones that scare me are the ones who expect me to copyedit my own writing. I’m a writer, I tell them, not a copy editor. The two are about as similar as a five-star restaurant and a fast-food drive through window. I can edit the copy for hours. . . but that’s not copyediting.

I worry that in our quest for quantity at the lowest possible cost we're forgetting about one tiny thing: quality. And in my mind, you can’t have quality without the sometimes annoying, extremely nitpicky, always welcome questions of a good copy editor.

Public Option, Medicare, What's the Difference?

2009-11-30T12:23:00.004-05:00

Warning: This is one of those "policy" posts, so if you're looking for pithy freelance medical writing verbiage, come back tomorrow.

If you're still with me, you know that the Senate begins debate today on the healthcare insurance reform bill (apparently we're no longer calling it “healthcare reform” because there's still so far to go in terms of reforming the overweight, out-of-control, drunken healthcare system we've created over the past 50 years).

One of the big sticking points to getting a bill passed in the Senate, pundits say, will be the so-called "public option." This component provides a bare bones, government-sponsored health plan, subsidized as needed based on income, to compete with private health insurance plans. The plan would be delivered by private insurers paid by the federal government. In the Senate plan, states would be able to opt out of it if they wanted. Nonpartisan estimates from the Congressional Budget Office show that just 4 to 6 million Americans would go for it. Oh, and it would save billions over 10 years. Yet based on the reaction from most Republicans and some Democrats, you'd think it was a proposal to cut off every American's right arm!

The main objection? We don’t want no stinking government involved in our healthcare insurance.

Ok then. Would every American aged 65 and older who opposes the public option component (and that would be you, Senator) open your wallets, pull out your Medicare cards, grab a pair of scissors and cut them into tiny little pieces. Obviously, you don't need them since you are so opposed to government-sponsored health insurance.

Or maybe you didn’t know that Medicare is run by, um, the federal government. Apparently not, since four out of 10 Americans in a recent poll said they wanted “government to stay out of Medicare.”

Sigh.

The irony of all this is that Americans love their Medicare. In another poll conducted last February, a majority of Americans said they think Medicare should be expanded to include all Americans (gasp! Wouldn’t that be . . . single-payer health care?). And a Kaiser Family Foundation Health Tracking Poll conducted in April 2009 showed that 77% of Americans feel that Medicare is “very important” for the country as a whole.

People. . . can we please make up our minds?

Do we or do we not want the federal government involved in our healthcare? As I tell my kids all the time, you can’t have it both ways. Choose!

What I'm Thankful For As a Medical Writer

2009-11-23T08:13:00.000-05:00

In the spirit of the upcoming holiday, here are 15 things I'm thankful for as a freelance medical writer (full disclosure: I stole this idea from my friend Alisa, who has an awesome blog on marriage and romance you should follow at www.projecthappilyeverafter.com)

I'm thankful . . .

1. That I get to work in sweaty workout clothes and no one knows (except my dogs and they smell worse than me).

2. For clients who know what they want, pay promptly, and actually provide feedback.

3. That I learn something new on every project.

4. That I can write about topics that affect everyone.

5. That I have more job security than anyone in a "traditional" job.

6. That I can set my own schedule.

7. That I have a PhD husband who shares my office when he's not traveling and can decipher statistics for me.

8. For the Internet. How did anyone do this job without it?

9. For my friend Gen who told me about the wonderful world of double computer screens; couldn't live without them!

10. For all the other freelancers at AMWA who listen when I need to vent and provide such great advice

11. For bibliographic databases. Endnote, I love you!

12. For NPR.

13. For naps.

14. For my puppy Jessie who loves to spend the day in my lap as I write.

15. For the gift of being able to make a good living doing something I love.

What are you thankful for this year? Leave a comment!

You Need Me . . .You Really Do!

2009-11-21T10:26:00.002-05:00

There's been a lot of debate about the role of the medical writer in world of journal articles. The "g" word (ghostwriting) has been tossed about like salt on a Rachel Ray set. I'll get into that debate in a later post, but for now I just want to say something about medical writers and why doctors need us: Doctors. Can't. Write.

Ok, before you start lobbing your stethoscopes at me, let me explain. I know there are some doctors out there who are not only wonderful at writing journal articles and other medical pieces, such as CME programs, but also fiction and nonfiction. Two of my favorite authors--Perri Klass and Abraham Verghese--are physicians.

But let's be honest here: you didn't become physicians because of the narrative power of your pen (or keyboard). You haven't spent 8 or 9 hours a day for the past 25 years turning a blank computer screen into a 4,000-word article or a 60,000-word book. You probably don't have an AMA Manual of Style holding down a stack of papers on your desk, Endnote reference database on your computer, and carpal tunnel from misusing a mouse for too many years.

I know this because I just finished a first-pass edit on several articles written by physicians, very, very outstanding physicians in their field. These articles are part of a CME program I was originally slated to write (with the doctors' guidance, of course), but the doctors decided that they could write it themselves. The client wisely hired me to, at the very least, go through the six sections (each written by a different doctor) and make them sound as if they were written by one person. She told me to expect them in early August. I got them in late October, and even then two of the six parts were missing.

Now you'd think that after all my years as a medical writer I would have been in this position before--editing copy that doctors wrote. And sure, once or twice a doctor or PhD has hired me to whip their copy into shape because they knew they couldn't write.

Normally, however, I work with the doctor to determine the direction of a piece, including any specific references. I do additional research, write an outline, send it to the doctor for approval, then start writing. I send the first draft to the doctor for review and approval, integrate their changes, get it reviewed again, etc. This way the doctor is doing what he/she does best--providing clinical expertise and judgment--and I'm doing what I do best--writing. I've written entire books for doctors in this manner.

Let me tell you; it's a process that works a lot better than the one I'm in the midst of. After struggling to bring clarity to these articles, including adding numerous comments such as: "Do you have a reference for this?" "Can you also tell me about the side effects of this medication?" "Can you provide a P value for this result and what's the confidence interval?" rewriting run-on sentences, explaining studies, reorganizing the document, identifying discrepancies, and trying to remain true to the learning objectives identified for the program, I understand more than ever why medical writers are important.

My message here is that it's OK to admit that writing is not your strength. Listen, I admitted a long time ago that diagnosing and treating a heart attack was not mine :-). It's also ok to admit, as too few people (doctor or otherwise) do, that writing is not only hard, it's hard work! It is not something that comes to naturally to many people and it is not something that most people enjoy. If I had a dollar for every time someone came to me with a project and then, when I told them what it would cost to have me do it, muttered, "I can't believe you charge that much for writing! I'll just do it myself!" only to return in a few weeks and gladly pay my fee, I could take that Mediterranean cruise.

One other thing and then I'll step off my soapbox. In the long run, giving a writing project to someone who is not a writer (or who is a bad writer) will not save you money. Remember: money is time. The time you spend trying to fix what you get can get quite expensive, not to mention the cost of the stress from missing your deadline.

So what do you think? Whether you're a writer or a physician or someone else who hires writers, join in the discussion.

Now THIS is a product I want to work on. . .

2009-11-20T06:52:00.000-05:00

"Bloomberg News (11/20, Matsuyama) reports, "A spray-on treatment for premature ejaculation may prolong sexual intercourse by as much as five times." In fact, the drug, known as PSD502, "delayed orgasm by an average of 108 seconds" after one month of treatment, according to a 256-patient trial conducted in Canada, Poland, and the US."

Hey, a lot can happen in 2 minutes!

The New Mammogram Recommendations

2009-11-19T09:33:00.001-05:00

I have one word for those who are freaking out over the United States Preventive Services Task Force's new mammogram recommendations suggesting that most women in their forties should not undergo regular screening mammograms.

Chill.

Good lord! You would have thought the task force recommended witholding treatment from any women in her 40s who had breast cancer, or banned her from getting a mammogram, or threatened to jail any insurance company that had the nerve to pay for said mammograms.

Could we all please take a breath and look at the facts for a moment?

Fact. The USPSTF is just one of three major bodies (including the National Cancer Institute [NCI] and the American Cancer Society [ACS]) that releases screening mammogram guidelines. The ACS has already said it has no plans to change its recommendation that women in their 40s have regular screening mammograms; the NCI is reviewing the data.
Fact. The issue of mammograms for women in their 40s has been controversial for decades; the USPSTF has updated its recommendation based on new evidence.
Fact. The USPSTF did NOT consider any economic data in making the new recommendation--only scientific data.
Fact. What is appropriate for a large population is not necessarily appropriate for an individual woman, which is why the task force still recommended that women talk with their doctors about their individual need for a mammogram.

The USPTSF guidelines are based on medical evidence and analysis considering the potential benefits against the potential risks. This is how drugs are approved, it's how doctors make individual patient treatment decisions, it's how many of us live our lives every day. It would really be a shame if this approach is thrown out the window because certain groups can yell louder than other groups.

The political backlash is, to be honest, scaring me. Congress is calling for hearings, the White House is "distancing itself" from the guidelines, the "rationing" word has been used more than cancer in this discussion. In one radio report, an analyst noted that the guideline change was "the best weapon the Republicans could have" to fight healthcare reform.

Um, excuse me?

I write a lot about health policy issues, particularly about the need to follow evidence-based guidelines when they exist and other issues related to both quality and cost. I've been learning about and writing about our bloated health care system and efforts to reign it in for nearly 25 years now (and, by way of full disclosure, once ran a provider relations department for a managed care company).

And I can tell you this: Now is not the time to start ignoring scientific evidence (and this is no way commenting on the evidence the task force considered; I haven't reviewed it and am not qualified to do so) in favor of gut feeling and politics when it comes to making population-based medical/health recommendations. If we do this, then our healthcare system--heck, our entire economy--is doomed.

Instead, we need more consideration of the evidence and, yes, we also need to consider cost along with efficacy. If two treatments are equally effective and one costs half as much, why should we go with the more costly one?

I've got news: This is not rationing. This is rational. Rationing is what we do now when women in their 50s and 60s who should be getting annual screening mammograms don't because they are uninsured or can't afford them. Rationing is why there is so much evidence showing that women without health insurance or with Medicaid coverage are more likely than other women to be diagnosed with late-stage breast cancer.

Remember 15 years ago when women with breast cancer insisted that they be allowed access to stem cell transplants even though there was no evidence that they were more effective than conventional treatment yet cost hundreds of thousands of dollars more?

I was a newspaper reporter then and I remember writing stories about women picketing outside insurance companies to gain coverage for the procedure and states considering legislation to mandate the coverage. Then came government-sponsored, well-designed clinical studies demonstrating no benefit of autologous bone marrow transplants over medium- to high-dose chemotherapy and, overnight it seemed, the issue disappeared.

This situation reminds me of that. For years we've known that teaching women how to do breast self-exams doesn't make a difference in breast cancer outcomes (and outcomes are what matters--not simply finding a cancer but whether the woman would have died from that cancer). We know that the dense breasts many women in their 40s have make mammograms less than ideal.Why are we suddenly acting as if someone just told us the sky really isn't blue?

Instead, we should be listening to Nancy Brinker, who started the Susan G. Komen for the Cure Foundation. Instead of belittling and decrying the task force's recommendations, she asked the question we should all be asking: So why don't we come up with a better screening tool than the mammogram? One that is more reliable for women in their 40s?

If only everyone would view the issue in such a rational light.

Until then, I have one request: Could we please just calm down and leave the medicine to the professionals instead of the politicians?

The check is in the . . . .

2009-11-18T08:21:00.000-05:00

As one of my freelance friends recently noted on a Facebook post, the best days in a freelancer's life are when the checks arrive. Lately, those days have been farther and farther apart.

This is the first year in 10 years of freelancing that I've actually woken up in the middle of the night worried about cash flow. The money is there--I've done the work and billed the invoices. But one large client went into Chapter 11 just as I was completing the first third of a major project. No worries, the editor assured me. All freelancers will be paid. Well, it took several calls and threats to stop work on the project before the second check finally arrived. Thankfully, the third check arrived with no problems.

Another client, a large professional medical organization, keeps "losing" my paperwork.

But the excuse that really makes me crazy is when I'm told that since my client's client hasn't paid them, they can't pay me. Um, excuse me?

My contract is with you, not your client. This is like me telling the guy currently painting my house that I can't pay him for three months because my clients haven't paid me. Imaging telling that to our power company, mortgage company, grocery store, etc.

The thing is, while many of us make a good living, most of us are really small potatoes in the scheme of things. We're the vendors who can easily be offended (I guess) because there are always more medical writers out there to take a job.

I think we need a list on the American Medical Writers Association that provides information about time to payment for companies, a list that will warn freelancers which companies are having problems so we can steer clear or take other steps to protect ourselves. Having once lost $4,000 because a company went into Chapter 9 two days after I handed in a project, you can imagine how skittish I am.

Other things we can do (and I try to do) is get one-third of the project fee up front, before starting the work. This doesn't always work, of course, because most projects are on such tight timelines you can't always wait for the check before starting.

We can try including payment terms in the contract, but this only gets you at as far as you're willing to hire a lawyer. Many have suggested adding a late fee. . but I honestly don't think it would be paid.

Anyway, let me know your thoughts about getting clients to pay in a timely (read: 30-45 days) manner. Are you having similar problems this year?

Welcome!

2009-11-17T13:34:00.000-05:00

A few weeks ago I decided to get my act together and hire an assistant to help with marketing, organization, etc., all the things many freelance medical writers are simply too busy to attend to until, one day, you realize you haven't had to work a full weekend in 2 months and you begin panicking about your (now normal) workload.

Now, I can thankfully report, I found a wonderful assistant in my friend and marketing maven Katy and I've had to work the past two weekends. I do think the recession is fading!

All of which is a long-winded way of saying that Katy informed me right off the bat that I must have a blog.

"But Katy," I replied. "I'm twittering. Isn't that enough?"

Apparently not.

So, welcome to my blog. The purpose of which is to give you a peek into the inner sanctum of a medical writer, misspellings, all-nighters, messy desks (see photo below) and all. Although it may get me into trouble, I plan to blog about current controversies in medical writing, including "ghostwriting" and CME funding, issues that, to my mind, have totally gotten out of control.

A bit of background: I've been freelancing now for 10 years. Prior to that, I spent 15 years as a newspaper reporter covering health and medicine, a manager at a mid-sized managed care company, and a writer/editor at a major health publisher. So, as you can see, with the exception of medical school, I've nearly done it all when it comes to health and medicine! From the clinical to the policy side, from consumers to professionals. I just can't imagine anything more interesting than writing about health and medicine!

Now, as I tell my clients, the point of a blog is to be current and interactive. To that end, I want to hear about you as well, and about what you'd like to hear more about from me. As for the current part--I plan to post no less than once a week, more if circumstances dictate.

So . . . with no further ado. . . . here we go.