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HEART for Women Act Hides Race-Based Medicine Research Agenda

S. 422, a bill introduced by Senator Debbie Stabenow of Michigan earlier this month, has a companion in the House, Lois CappsH.R. 1032. It takes the short title of the “HEART for Women Act of 2009,” with HEART being an acronym for “Heart Disease Education, Analysis Research, and Treatment.” Its longer title: “A bill to amend the Federal Food, Drug, and Cosmetic Act and the Public Health Service Act to improve the prevention, diagnosis, and treatment of heart disease, stroke, and other cardiovascular diesases in women.” The bill has 27 cosponsors in the Senate and 110 cosponsors in the House, with majority Democratic cosponsorship but significant levels of Republican support as well. A website called womenheart.org promotes it:

Now is the time to take action! Demonstrate your concern for women with heart disease and support for the HEART for Women Act by contacting your member of Congress by phone or e-mail and urging them to become a co-sponsor of the bill.

Here is how you can help.

Send a letter or e-mail to your members of Congress to thank them for being a co-sponsor or urge them to sign on.

You’ll find the tools you need in the box to the right.

Do it for yourself, for your moms, your daughters and granddaughters, your sisters and friends. Do it today!

and asks people to write to their members of Congress with appeals like this:

The women in your life are depending on you and your colleagues to take action to eliminate what studies show are serious disparities in the diagnosis and treatment of women with cardiovascular disease that result in a higher mortality rate in women compared to men. One day one of those women may be faced with the need for care and treatment and you will want them to have access to the highest standard of care available.

So you might think, then, that this was a bill about prevention, diagnosis and treatment of cardiovascular diseases in women. Right?

Well, you wouldn’t be wrong, not exactly. But there’s a lot more to this bill. Here’s a significant part of the meat of H.R. 1032 and S. 422:

(B) The Secretary shall modify the section referred to in subparagraph (A) to require that reports under such section include any clinical data possessed by the sponsor of the investigation that relates to the safety or effectiveness of the drug involved by gender, age, and racial subgroup.

So this really isn’t just a bill that is about increasing the effectiveness of cardiovascular health care for women; it’s also a bill that aims to increase the effectiveness of cardiovascular drug treatments for members of different racial subgroups. Age is in there too, and I don’t know what to think about that, but it was the phrase “racial subgroup” that really hit me. Why wasn’t this in the title of the bill?

I’m not necessarily coming out against race-based research on pharmaceutics or other health-care interventions; this is a neck of medicine and genetics that has reasonable people with a variety of positions. It is undeniable that there are certain cardiovascular drugs that on the aggregate to work better for whites than for blacks (and vice versa), and considering observation on the basis of racial appearance alone it would seem ludicrous not to make different prescriptions for people of different skin color. But on the other hand as scientists poke more into this subject, what appears to matter more in medicine than the social category of race is the actual genetics possessed by a person. After he was caught uttering some blanket claims about the innate intelligence of Africans, the genome of genetics pioneer James Watson was found to contain a number of sequences that are very rare in white people, the group into which Watson is socially lumped. The presence of these sequences in Watson mean that he would respond poorly to being given “white medicine” for a variety of diseases. The point is that studying a person’s actual genetics rather than looking at their skin tone would result in greater accuracy. Turning again, a counterpoint is that doctors don’t have detailed information on everybody’s genome at hand. When making quick decisions that don’t cost a lot of money, one’s skin color is a lot more readily apparent to a doctor than one’s genome, and on the aggregate it is an empirically useful indicator. Similar empirically useful indicators, such as extreme right-lower-quadrant belly pain for appendicitis, are uncontroversial in the aggregate, even though they also have significant chance of being wrong in any one individuals. What is it about a skin color based indication that is so controversial? The answer may be the confluence of science and history; no group ever got shoved into slavery on the basis of their right-lower-quadrant belly status.

No, I’m not going to pretend I have the answer to this dilemma, especially because I am neither a doctor nor an actor who plays one on TV. But I do think it’s interesting that language to promote research findings on the race-specific efficacy of pharmaceuticals is tucked into a bill that takes pains to describe itself as a bill about something else, something more comforting and socially acceptable, like concern for the state of women’s hearts. (The shadowing of age may make us similarly uncomfortable, although as I said I’m not sure where the issue of age sits.) Attorney General Eric Holder remarked earlier this month that “in things racial, we have always been, and we, I believe, continue to be, in too many ways, a nation of cowards.” It may be that the strategy for writing and promoting the HEART for Women Act of 2009 proves Eric Holder right. What politician wants to have to explain supporting a bill that implicitly agrees with the idea that racial distinctions have a valid biological basis? Isn’t it easier to quietly tuck language into a bill that’s about protecting women’s hearts?

We need to have discussions about biological differences in this country, but we need to have them in more a sophisticated, grown up, nuanced manner than the language of “race” offers. This literally isn’t a black-and-white issue. Those uncharacteristic genetic sequences of Watson’s are most often found outside populations called white, but also most often found outside populations called black; his sequences are most prevalent in people claiming ancestry in Asia. Even words like “racism” are stumbling blocks. The word “racism” can be applied to people who make money selling shirts that extrapolate from Barack Obama’s skin color to the portrayal of him as a chimpanzee, pimp, or bum spouting lines like “gimme yo”… “done come”… “bitch, betta”… and “i is u president.” The word “racism” can also be applied to scientific studies making genetic distinctions in reaction to drug regimens.

Either we need to come up with new words to discriminate between empirical and unempirical approaches to studying biological variation in humanity, or we need to get comfortable with the exercise of distinguishing between empirical ambiguity and wild fantasy. The third option is to continue to hide support research programs in bills about more comfortable subjects.

4 comments to HEART for Women Act Hides Race-Based Medicine Research Agenda

  • Tom

    Is this part of that BILLION dollar research agenda of the stimulus bill i read about? It’s pretty spooky and could easily be misused by insurance companies to DENY coverage to we marks out here in the trenches.

  • Jon

    “in things racial, we have always been, and we, I believe, continue to be, in too many ways, a nation of cowards.”

    Race is used as the “cause of and excuse for” too many things. I would prefer that we were able to discuss it more openly and honestly than we do. As I understand from what I have read, there are certain differences in how people with specific genes react to medication. Recently there was a report of a man with HIV receiving a bone marrow transplant for a donor who seems to have a genetically derived immunity to the AIDS virus. The recipient of the marrow has been free from the virus for sometime now.

    It would seem obvious to most that if you give credence to genetic adaptation, then within the Human species as a whole there is the potential for wide variation in the natural adaptive response to different diseases. We would do well to learn from it rather than bury our heads in the sand.
    Unfortunately as as group humans react like teenagers raised in a disfuntional household. We need to learn from the past and resolve not to make the same mistakes, then move forward into the future with a bold bright resolve.

  • Jon

    “We need to have discussions about biological differences in this country, but we need to have them in more a sophisticated, grown up, nuanced manner than the language of “race” offers.”

    Jim, while I freely admit that you are capable of the nuanced aspect, many people that sorely need to benefit from an open and honest discussion, are not. To some degree we need to take the chip off our collective shoulders. Not with the intent of crudeness, but rather with an honesty that is instructive and building, not counter productive.

  • Amy

    A body does not exist in a vacuum. The place you live, the activities you do, the food you eat and the genetic makeup of who you are plays a part. Race, gender, and ethnicity are all part of the physical body and its environment. We know that some races are prone to sickle cell anemia. We know that many Asians have an enzyme reaction to alcohol which makes their face turn red when they drink. Why then, should we know stratify data by gender, race, and ethnicity to find trends, spot inequalities in care, and target the most at risk groups? Health is a social construct and therefore problems with health can be prevented, treated, and cured by considering the factors in society that affect us. Stratified data is the first step, then we need to ensure those most at risk have access to quality care. Otherwise, we will go on assuming that the 50 years of heart disease study that was conducted on white men is what applies to everyone. Do your research on the female pattern heart disease(a woman erode whereas a man’s arteries explode or fatty plaque in men is lumpy and a woman’s fatty plaque is smooth and evenly distributed) , which is actually different from typical male pattern heart disease to realize that although we can all do the same jobs and think the same great ideas, there are biological differences.

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