Dana Goldstein

Genetics and Health Care

Today the Senate is celebrating passing (by a 95-0 vote) the Genetic Information Nondiscrimination Act. The bill, which President Bush supports and is expected to quickly pass in the House, would make it a crime for health insurers and employers to discriminate based upon genetic tests showing an individual is susceptible to a particular disease or condition. Sen. Ted Kennedy hailed the legislation yesterday as "the first major new civil rights bill of the new century."

Indeed, after failing to pass the Equal Pay Act earlier this week, GINDA is a real accomplishment. No one deserves to have their insurance premiums raised, or to be denied coverage, because they carry the breast cancer gene, or because they are genetically susceptible to illnesses that can be aggravated by work, such as carpal tunnel syndrome. But the bill makes absolutely certain to preserve insurers' rights to discriminate once those diseases have actually presented themselves. In other words, discriminating on the basis of a "pre-existing condition" continues to be perfectly fine, even though discriminating on the basis of genetic susceptibility to a condition will likely soon be against the law.

As an ideology undergirding our health care system, you can see how this is inconsistent. Either human beings deserve affordable medical care regardless of the diseases they have, or they don't. The sad truth is, protecting the basic for-profit nature of American health care (read: the right of insurers to deny coverage) is what's needed to attract Republican Congressional support to any reform bill. And that's why, despite Ezra's protestations, I'm inclined to woefully nod in agreement when Congressional Democrats throw water on hopes for universal health care in 2009.

cross-posted at TAPPED 

Behind the Numbers: Teen Sex Infections

Dismay greeted news this week that a quarter of 14 to 19-year old women are infected with at least one of four common sexually transmitted diseases: human papillomavirus (HPV), chlamydia, genital herpes and trichomoniasis. A look behind the numbers is even more staggering. Because only half of the 838 young women in the CDC study were sexually active, that means 40 percent of teenagers who have had sex at all are infected with an STD. Half of all African American teen women were affected by one of the diseases, compared to 20 percent of white teens.

Some feminist writers, including Samhita at Feministing, have asked why the CDC chose to conduct such a high profile teen STD study that focused only on women. After all, in the vast majority of cases, it's guys who are giving girls these infections, yet young women, once again, are alone at the center of a storm of media hang-wringing about their sexuality. But push deeper into the survey results and there may be a hint as to the CDC's motivations. As expected, the majority of the infected young women who participated in the survey suffered from one disease, HPV, which affected 18 percent of the teenagers. The second most common disease, chlamydia, affected only 4 percent.

It's important to publicize these numbers because there is now a vaccination, Gardasil, that protects girls and women from the cervical cancer-causing HPV. Yes, comprehensive sex-education is a huge part of the prevention equation; without information on contraceptives, young men and women can't make the best decisions about how to protect their health. But if these new numbers shock heretofore reluctant parents into dealing with the reality of teen sexuality and vaccinating their daughters, that would be a great thing for women's health.

Still, next time around, I hope the CDC focuses on teen guys. Those little buggers and their parents need a wake-up call, too.

Update: A friend of mine working in health policy cautions that it's possible that Merck, the manufacturer of Gardasil, encouraged the CDC survey, just as they've encouraged laws around the country that would have schools get involved with promoting the vaccine or even make vaccination mandatory. So far, there's no proof of this, although it's something worth considering. I'll find out more if I can.

cross-posted at TAPPED

The Pain Game

As I've mentioned from time to time before, I am a chronic migraine sufferer. It's been a lifelong problem for me; my parents tell me that before I could speak, I'd scream myself to sleep in my crib clutching my tiny head, and then mysteriously, be perfectly alright the next morning. Although migraines run in the family on my mother's side, you don't hear of many babies who suffer from the disorder. But I've dealt with debilitating migraines for as long as I can remember. Some of my earliest memories are of my mother sitting by my bedside in the dark and soaking a washcloth in a bowl of ice water, applying and reapplying it to my forehead. She recently told me she doesn't remember this, but she would read to me by flashlight on those nights until I fell asleep.

Late in adolescence, my migraines became much worse. Instead of happening once or twice a month, they came two, three, or even four times a week. For the first time, I'd go to sleep with a migraine and awake still feeling the pain. My sleeping and eating schedule became something I had to plan rather carefully, or I'd risk bringing on an attack: Eat every four hours. Don't sleep too late on weekends. Indeed, hunger and exhaustion took on new characteristics inside my body; no longer were they confined to the stomach or a feeling of light-headedness. They caused a dull pain to emerge in the area around my left eye, a pain that would sharpen over time if not treated, eventually causing intense nausea.

Doctors tell me it's normal for women to experience a worsening of their migraine condition during the most fertile reproductive years of their lives. In that case, menopause might have a silver lining for me.

So I was fascinated this morning when a friend who suffers from occasional migraines pointed out to me Judith Warner's New York Times column on her failed attempt to wean herself off migraine drugs through denying herself many foods that act as triggers.  I've been on a variety of medications that supposedly treat migraines: Barbiturates that dull the pain without addressing the underlying swelling of the blood vessels in the head; the anti-anxiety drug Paxil; the daily blood pressure medicine Atenolol, which is supposed to decrease the likelihood of said blood vessels swelling; and Imitrex, part of the triptan group of drugs that can halt a migraine completely if taken early in the attack, but which cause "rebound headaches," mini-migraines that are like aftershocks from an earthquake. I regularly talk to my doctors about how often I should be taking these drugs, and in what combinations. I've also switched birth control pills multiple times in order to find a hormonal treatment that can decrease the frequency of my migraines.

Sure, there are triggers to migraines that can be avoided. But unlike Judith, I'll never stop eating cheese or chocolate, not even for a little while, to curtail migraines. I enjoy those things, they don't generally cause migraines for me,  and there are simply too many other triggers I can't control (the stresses of work and, um, life) to obsess over those few. I think Judith diagnoses perfectly why so many women seek to take themselves off medication that helps them function: "And, once I got used to it, I came to almost enjoy being on my diet, exploring my capacity for hunger and self-abnegation, obsessing over what foods I could eat, and how, and when. At the very least, the diet made my friends happy. Renouncing food, renouncing pills, is so often, in our time, seen as the right and righteous, pure and wholesome thing to do."

I've struggled against the desire to not take my migraine meds my entire life. As a child, I would press my head up against the cold school bus window to numb the pain, instead of treating it with drugs. I wanted to be in control, not to feel woozy or cotton-tongued. Imitrex, when it appeared on the market, was a godsend for me because it worked quickly and had relatively few side effects. But its effectiveness has decreased somewhat overtime as my reliance on it has increased.

All I know is that I am a more effective and compassionate person when I don't have a migraine. And in over two decades of dealing with migraines, I've found only one non-medicinal treatment that actually works, one that Warner doesn't mention. It's called biofeedback. Using this technique during a migraine attack, I can sometimes fall asleep with a cold compress on my head, delaying the decision on whether to take strong drugs until the morning. Learn more about biofeedback here -- it can work for other types of pain, as well. Although initial consultation with a biofeedback therapist can entail hooking you up to a machine that measures your blood flow, I use biofeedback as a completely free, equipment-less meditation technique that redirects blood flow in my body away from the inflamed area. I close my eyes and imagine dipping my fingers and toes into warm sand at the beach. With focus, this, believe it or not, can draw the pain away from the head.

Jenna's Story

My post here Sunday on some of the unexpectedly progressive statements coming out of Jenna Bush's mouth during her book tour has led to a full-length Prospect column. I think I may be the only journalist who wrote about the book to have actually read the entire thing. And as my editor Ann Friedman points out, this article is where Wonky McWonkster feminist liberal journalism meets Us Weekly. So if that appeals to you, I hope you'll check it out:

Like the vast majority of Americans in their mid-twenties, Jenna Bush believes condoms effectively prevent the spread of HIV, comprehensive sex education helps young people make healthy choices, and sex between two mutually loving people is okay -- even if they aren't married.

None of that is surprising. But given that Jenna Bush is the daughter of a deeply conservative president, one whose administration has in part been defined by retrograde sexual politics, it's rather extraordinary that Jenna has written a book advocating a practical, social justice stance toward the problems of poverty, AIDS, child abuse, sexual abuse, and teenage motherhood in Latin America.

Jenna Bush...Not Exactly What You'd Expect

Perusing the Washington Post this morning, I learned that Jenna Bush, the blonde twin, taught elementary school right here in my own neighborhood of Mt. Pleasant, Washington, D.C., at the Elsie Whitlow Stokes charter school. In recent days, Jenna has made herself available to the media for the first time. She's promoting her new book, Ana's Story, which tells the tale of a 17-year old HIV-positive mother in Panama who she met while working with UNICEF. Jenna is also recently engaged to Henry Hager, a GOP blue blood.

But what I found really interesting is that despite defending her dad as a good man, Jenna comes perilously close in the interview to publicly opposing his policies. Here's some of what she had to say:

On Iraq and criticism of her father: "Nobody wants war. ... Obviously, all of this breaks my heart."

On HIV prevention strategies: "Everybody knows that condoms prevent the spread of HIV/AIDS."

On the United Nations: "I'm not my dad. I can tell you that UNICEF is doing incredible work."

Visiting Elsie Whitlow with reporters from the Post and NBC, Jenna speaks frankly to the students about HIV. "Can you get HIV from holding hands?" she asks the students. "No!"

Someone call Bill Frist.

Should States Require HIV Tests?

Among men who have sex with men in New York City, there has been a 33 percent increase in HIV infections over the past six years, the Department of Health announced this week. Ninety percent of the newly infected people are black and Latino. In Washington, D.C., 1 in 20 residents is HIV-positive. If the District of Columbia was a country, it would have the 11th highest HIV-infection rate in the world.

AIDS is still very much an American disease. So it makes sense that states, in accordance with recommendations from the CDC, are taking aggressive steps to curb the epidemic. New Jersey is considering requiring HIV testing for all pregnant women, unless they specifically choose to opt-out of the program. By treating the expectant mother with anti-retrovirals, cutting out breast feeding, and delivering via Cesarean, the rate of transmission between mother and child can be cut to 2 percent. And the California legislature passed a bipartisan bill tacking HIV testing onto large-scale health care reform. It would require HIV tests to be part of annual check-ups and other routine health care visits, unless a patient specifically opts out in writing. Currently, patients must give written consent to be tested, so this flips the burden. Five states already require HIV testing of pregnant women; Arkansas, Michigan, New Mexico, Texas, and Tennessee. In New York, Connecticut, and Illinois, all newborns are tested.

But there's a darker side to what seems like sensible public health efforts to weed out HIV. While required testing is supported by some HIV/AIDS advocacy groups, some feminists and civil libertarians are opposing the state measures, suggesting they pressure low-income and minority women and men, many of whom would face discrimination if their HIV-positive status was know, into undergoing the tests. Over at RH Reality Check, Emily Douglas has a good run-down of the issues at stake. Organizations such as as the ACLU are concerned that mandatory testing impedes upon patients' rights to refuse specific types of treatment for HIV or any other medical condition.

That said, it seems evident that the state has a legitimate interest in preventing the spread of a deadly, highly contagious virus from one generation to the next, as well as among the population at large. The key factor is pre-test counseling and post-diagnosis support. Since pregnant women in New Jersey would be able to opt-out of the test, they need to be given a full understanding of their rights and the health benefits of undergoing the test. And patients who test HIV-positive after a routine exam must be given support not just medically, but socially as well, to make sure they understand what resources are available should they experience discrimination.

We can't protect every HIV-positive American from a world scared of the disease and, too often, its victims. But we can educate the public. The bottom line is that it's impossible to fight a contagious disease without identifying the infected and helping them keep others safe.

--cross-posted at TAPPED

You Can't Ignore Condoms if You Want to Fight AIDS

I don't know what it is, but I never pass up an opportunity to debate circumcision, and especially its utility as an HIV prevention method. Today the Washington Post reports that members of the Luos tribe in Kenya are embracing the practice, convinced that their decimation from AIDS relative to other Kenyans is due to their uncircumcised status.

The World Health Organization endorsed circumcision as an HIV-preventative last year in response to studies showing that African men are 60 percent less likely to contract the disease if they are circumcised. This Post article goes further than others I've read on the topic and blames the lack of circumcision among some African tribes for the original spread of the disease:

AIDS emanated from the jungles of Cameroon or Gabon but hit massive epidemic levels after reaching the uncircumcised tribes around Lake Victoria and, later, southern African tribes that had abandoned their own traditional circumcision rites.

I think circumcision shows a lot of promise as a way to beat back the AIDS epidemic in Africa -- the UN estimates the practice could save 5.7 million lives. Whether we should also be promoting circumcision as a public health practice among American men, whose sexual habits and risk levels are very different, is a different debate. American AIDS advocates tend to be wary, as they should be, of any program that shifts emphasis away from condom use. Indeed, men who undergo circumcision as adults, in Africa, the United States, or anywhere else, must understand that unless they practice safe sex, they will remain at risk. So while it's encouraging that the Bush administration is pledging millions of dollars to promote circumcision in Africa, it's dispiriting that it continues to block any U.S. funding of foreign contraception programs.

Abortion "Eugenics" Debate Gathers Steam

As I was reminded during my travels, the abortion debate is by no means confined to America's borders. I saw anti-choice posters featuring fetuses on the street in downtown Vienna. But that's old-school anti-abortion activism; one newer strategy, in both the U.S. and abroad, is to portray the procedure as a form of "eugenics," whipping up moral panic over the fact that due to advances in prenatal genetic testing, up to 90 percent of expectant parents who receive a definitive prenatal diagnosis of Down syndrome are now choosing to terminate their pregnancies. Now, as Agence France Presse reports (via Kaiser Daily Women's Health Policy Report), Italy is awash in controversy over a botched June abortion in which the wrong twin fetus -- the one without Down syndrome -- was aborted. The pregnant woman chose to abort her second fetus when she learned of the mistake, and reported her doctors to the police. The Vatican's newspaper called the woman's original choice to abort "illegitimate." And an Italian senator wrote an op-ed declaring, "What happened in this hospital was not a medical abortion but an abortion done for the purposes of eugenics."

The intersection of reproductive justice and disability rights is one of the thorniest in medical ethics, and pregnant women are feeling the pressure on all sides. It shouldn't be presumed, for example, that women of color, poor women, or single parents will be more interested in terminating Down syndrome pregnancies because of fewer resources to care for a disabled child. In fact, in the American Latino community, more parents choose to continue such pregnancies.

But families who do decide to abort -- and who often go into genetic testing knowing they will terminate an affected pregnancy -- should not be pressured to meet with parents raising children with Down syndrome. Such programs are gaining popularity in the Down syndrome community, since parents of kids with the condition are understandably concerned that fewer people with Down syndrome means fewer resources devoted to helping people with the disease. It is this anxiety within the disability rights community that anti-choicers are poised to exploit, even as disability advocates reach out to the pro-choice community in an attempt to increase understanding. If you're interested in learning more about that dialogue, check out this piece of mine from In These Times.

Of course, it's long been an anti-choice tactic to create an acceptability hierarchy of women's reasons for choosing abortion. Remember South Dakota state representative Bill Napoli saying that the only moral abortion would be for a religious teenage virgin who'd been brutally raped and sodomized? The problem, of course, is that most people live in a world not of moral absolutes, but of gray areas, and want their laws to reflect that. That's why South Dakota voters rejected their no-exceptions abortion ban last year. So in a time of increased worry over the uses of genetic medicine, we should be on the lookout for attempts to smear women's choices with the label "eugenics." It's simple common sense that not every family can, at any given point in their lives, accept the burden of raising a severely disabled child, just as not every family can accept the burden of raising any child.

My Upcoming Vacation, PLUS: Blue Cross Blue Shield, Can't You Cut a Girl Some Slack?

I may not have told you this yet, dear readers, but I am spending all of August in Europe visiting Berlin, Vienna, Budapest, and three cities in Croatia; Split, Hvar, and Dubrovnik. This is a trip I've dreamed about for a long time, and my wonderful new employers at The American Prospect were kind enough to trade me an August vacation for working these few weeks in July. Why Central Europe? A big reason is that I'm fascinated by the Jewish history of Germany, Austria, and Hungary. Berlin in particular has excited me since I took a class on twentieth century Germany with Omer Bartov. As for Croatia, you'll find me at the beach.

Since I'll be away for a month, I called my insurance company on Monday to ask how I can make sure I have enough of my medicine to last. "Just go to the pharmacy and have them call us," the guy told me. So yesterday, that's what I did. After a long phone call, the friendly pharmacist told me my pills would be available July 18. Today, the 18th, I returned to the pharmacy. A different pharmacist pulled out my drugs, and said the insurance company would cover two months of my migraine medication, but not my birth control pills. The migraine meds I take are powerful neurological drugs that reduce the flow of blood to the brain. The birth control is, well, extremely common and safe.

I told the pharmacist, "No way am I paying out of pocket." She called Blue Cross Blue Shield. They told her I had to have my ob-gyn call them directly for "prior authorization," directly contradicting Monday's information.

At this point, I was getting really angry. Why on earth does a woman need a doctor, a pharamacist, and three different insurance company bureaucrats to sign off on her request for 60 days worth of completely safe oral contraceptives? These are pills that are sold over the counter in other Western nations, for crying out loud! And speaking of silly, I resent the fact that I have to traipse to CVS every 28 days to get my new pack -- paying $35 for it after coverage -- when this is a medication I use every single day. Why can't I buy in bulk?

Okay, sorry to vent that frustration. But that's what a blog is for, right?

Planned Parenthood Wrap-Up

My last dispatch from the Planned Parethood presidential forum is up this morning, on Hillary Clinton's speech. All three campaigns were impressive, but Hillary definitely had the strongest takeaway -- she simply has more experience working on these issues, from her time as an attorney, through her international work as first lady, to her voice as a Senate leader on choice, Plan B, and comprehensive sex-ed.

Interestingly, the male college student who accompanied me to the event pronounced Hillary "soporific." Sigh.