Thursday, October 25, 2012

Fatal Interpretation Part III: The New Racial Technology

Fatal Interpretation Part III: The New Racial Technology

Now comes Chapter 7, “Pharmacoethnicity,” and now we’re getting somewhere in territory I am quite familiar with, the Human Genome Project, DNA, and pharmacoeconomics. In a rant titled “The Unfulfilled Promise,” Dorothy Roberts states “Today, most drugs are developed for the whole population based on a ‘one size fits all approach. But there is a wide variation in the safety and efficacy of drugs among the individuals who take them.” Yes! I’m with her!

But then we’re back to her distain for race-based pharmaceuticals. I’m not going to bother quoting Roberts when you can read the book for yourselves, but I have often wondered why I am given the same dosage of an antibiotic as a black male twice my size or an Asian teenager. A passage in the book about whether or not the likelihood of certain diseases occurs in multiracial people is ridiculous because we just don’t know.  

The fact remains are that there have been many diseases that have shown prevalence in one race, including sickle cell anemia, Tay Sachs Disease, asthma, high blood pressure, and skin cancer. We are not on the brink of truly personalized medicine if people like Dorothy Roberts continue to shun any race/medicine connection. We really don’t know if this thing called “race” contributes to health risks in certain populations or not. This debate has gone on for literally hundreds of years.

I fondly remember sitting with F. James Davis, author of Who is Black? for hours when he came to visit me. That was in the early 90s, and we were batting the same arguments back and forth! It was mutually enjoyable, not divisive.

Chapter 8 “Color-Coded Pills” is where the rubber meets the road. Enter BiDil, that first race-specific drug. Roberts slams BiDil in every way she can, but she can’t truly dismiss it. BiDil is prescribed for blacks with heart failure. It is very common for a drug to be repackaged as benefitting something else when its patent is about to expire, which is what happened with BiDil. The FDA approved it. It’s actually the combination of two drugs. I don’t think the specific clinical trials were handled correctly for BiDil, and a longer study with more races and ethnicities should have been done. That does not mean that BiDil should be shelved. It means more investigation is needed.

News Flash: The pharmaceutical companies are in business to make money. They repackage and reintroduce new uses for drugs every day. Although a drug patent usually lasts for 20 years, by the time it hits the market after clinical trials, it can actually be only 8 to 12 years before the exclusivity is lost and generics can be made at a much lower cost. In other words, once the patent expires, other companies can produce the drug, introducing competition and lowering the price of the drug.

If the original drug company can join the same drug with another drug or find a new usage for the same drug, it’s a win for them; it means a new patent and more profit, which is exactly what happened with BiDil. The economics of pharmaceuticals is fascinating. Another example is antibiotics. We have been told over and over to stop demanding antibiotics from our doctors because people are becoming immune to them and soon they won’t work at all. The obvious question is why don’t the pharmaceutical companies develop new antibiotics? Because they are not money makers. Antibiotics are dosed short-term, a week to ten days usually. The big pharmas can make much more profit from making long-term drugs for chronic ailments. Money is what this is really about, not race.

There is nothing new there, yet Roberts states, “As should now be clear, there is no scientific proof that BiDil works differently in black people.” No, Ms. Roberts, it’s not clear at all. BiDil might save lives of African Americans. We just don’t know for sure. Meanwhile, Roberts states that insurance companies refused to cover the cost of what was now two generic drugs, but put together, which is possible. Yet if my doctor tells me that one brand drug has replaced two generics and that particular drug is not covered on the formulary for my health insurance, it’s up to me to decide if I wish to pay out of pocket for it.

Roberts also goes into only a few other drugs that fight certain diseases found to help certain races. It’s not a very inclusive list. Roberts also states that pharmaceuticals will not eliminate the social conditions and barriers to medical care that create health inequities in the first place. Wow, I didn’t realize pharmaceuticals were supposed to do that.

It simply is better to have demographic subsets for a lot of things in a clinical trial, depending on the drug being tested. If no racial differences appear, great! But what if race is not looked at and it turns out Asians, for example, do react to that drug differently?

Roberts gets to Chapter 9, “Race and the New Biocitizen.” Stay with me. Yes, there are companies that offer to analyze your whole genome sequence and those that offer a portion of your DNA to be tested. At this point in time, I agree that it’s not 100 percent accurate—it’s too soon—and many companies are getting into it for the money. Also, the health world is more comfortable with genetics than with “race.” I like Roberts explanation of mutations of the BRC1 and BRC2 genes associated with higher risks of breast and ovarian cancer because—she didn’t plan it—but  she gives perfect examples of exactly why multiracial women need to be proactive in this area.

This author completely loses me in her discussion about genetic testing for pregnant women. She goes into her personal story, which took place in 2000 when she was pregnant with her fourth child at age 44. Having amniocentesis usually is recommended if the mother is over the age of 35. She doesn’t say she actually had amnio, but lets us know she participated in a clinical trial investigating the potential for a blood test and ultrasound to detect in the first trimester of pregnancy because of the risk of Down syndrome and other chromosomal defects. So she apparently goes through all of this so she can get a free ultrasound and complains that no one explained to her why she was getting genetic testing in the first place. What?! And she didn’t ask? Why wasn’t she proactive for her unborn child? We really are very different people.

I was over 35 when I was pregnant with my second child. I chose to have CVS (chorionic villus sampling) done after thoroughly investigating what was known about it then. The genetics specialist explained in total detail what he was going to do and why. We even joked about the baby having the first case of Sickle Sachs (Sickle Cell and Tay- Sachs) because of the black/Jewish combination. Bad joke, I know.

After the testing, my insurance company refused to pay because they said it was “experimental.” No, I was not buying that. I pulled out all my research, showed them why it was no longer experimental and that amniocentesis would have cost them more and I would have had to wait much longer to have it done. They paid for the test entirely.   

Chapter 10 is “Tracing Racial Roots.” The chapter is devoted to showing how flawed racial science is going to do us all in. After all, she tells us that although biracial, she “formed my own moral allegiance to black people based on a sense of common struggle against racial oppression.” Too much personal information. Oh wait, in the same paragraph, she also alludes to people getting benefit from “mixed ancestry.”

Then comes the history lesson of how everyone comes from African ancestry anyway. More personal examples and I’m not sure why this is even necessary or in the book at all. She uses all the right words from the anthropology gurus, but you can read it for yourself. I am not even going to comment on the crazy statements in the Am I Jewish? and Authenticating Native American Blood sections. In Consumer Beware!  Roberts warns us not to fall for DNA test kits being sold. That makes sense and I agree at this point in time.

Dorothy Roberts shows in Making Racial Claims that blacks know how to play the game of getting race-based scholarships and entitlement to affirmative action. At least I think that’s what she’s trying to say, but then this: “Whites defined enslaved Africans as a biological race. Blacks in America have historically resisted this racial ideology by defining themselves as a political group.” Really? A political group? Then she brings up her own multiracial heritage again and reminds us, “But as a young girl, I chose a heritage rooted in the struggle of black people around the world to defeat racism and demand treatment as equal human beings.” Why does Dorothy Roberts spend so much time and effort deconstructing race only to choose one? Why does she get to pick something that is not biological? Why multiracial people who want to embrace their entire heritage are touting this book as “life-changing” is just beyond me. Look for the final review in Part IV next week.

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