A new high-tech, grassroots effort to fight breast cancer

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I wrote this article for Slate’s Tech blog, Future Tense, after hearing about it from Joanna Rudnick, my close friend and one of the leaders of the project. You can see the article, which ran June 25, 2013 on Slate’s website here.

free the dataBy now you’ve probably heard that, thanks to the Supreme Court, no one, and certainly not Myriad Genetics, can patent human genes. This decision was sensible and long overdue, but the celebrations have been short-lived. Because what you may not have heard is that Myriad still owns all of the information it has collected since the mid-1990s on the breast cancer genes—and it has no intention of releasing any of it.

Myriad’s interpretations of mutations are out there, but scattered in a million pieces—in the reports it has sent out to women, or, more often, to the clinical centers where they were tested. But a new volunteer grass-roots effort, led by a few women with a family history of breast cancer, is trying to Free the Data so that scientists everywhere can analyze it and help women make informed choices about their breast-cancer risk. In collaboration with the University of California-San Francisco, the nonprofit advocacy group Genetic Alliance, and a biotech company InVitae, these women are hoping to collect even a tiny fraction of the million or so reports Myriad has sent out over the past 17 years.

Read the full article on Slate.

Controversy over cervical cancer vaccine

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(This article was #26 in Discover Magazine’s top 100 stories of 2007.)

This past year, several countries and at least 24 states in the United States introduced laws to mandate vaccination against cervical cancer for preteen girls. Although the vaccine was initially hailed as a breakthrough, urgent proposals to make it mandatory quickly triggered a backlash. “In the long term,” says Susan Wood, a former director of the FDA Office of Women’s Health, “the rush to get this mandated immediately has done more harm to the issue.”

The FDA approved Merck’s Gardasil vaccine in 2006, after clinical trials showed that it protects against four strains of human papillomavirus (HPV), which together cause about 70 percent of cervical cancers and 90 percent of genital warts. HPV is the most common sexually transmitted virus among Americans (and cervical cancer is the second most common cancer in women worldwide). Because the vaccine doesn’t reverse existing exposure, the CDC recommends it be administered before the age of sexual activity—specifically to girls ages 11 to 12. As for women who already have HPV, two separate studies published in May in the New England Journal of Medicine reported that the vaccine’s effectiveness in preventing cervical lesions dropped to 20 percent or less.

Some conservative groups oppose targeting preteens, arguing that because the virus is sexually transmitted, the vaccine will encourage promiscuity. Meanwhile, bioethicists who are skeptical about compulsory vaccination laws note that all other mandated vaccines protect against diseases easily transmitted in schools. “In my opinion, there’s not a compelling ethical reason [to mandate],” says Richard Zimmerman, professor of family medicine at the University of Pittsburgh. “The ethics is the opposite: to strongly recommend, but not to mandate.”

Don’t rush your vaccines

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(This Opinion column ran in Nature’s news site on May 17, 2007. You can read the original post here.)

The ethical debate about a vaccine for a sexually transmitted disease has been premature, says Apoorva Mandavilli; we don’t even know how well it works.

Here’s a good lesson: before you start pushing for a controversial vaccine to be made compulsory, HPV vaccinebest wait for the research — and I mean all the research — to come up with results.

For more than a year, we’ve been hearing that there is a vaccine that is 100% safe and effective in protecting young girls and women from the deadly viruses that cause cervical cancer.

Merck’s Gardasil, a vaccine against human papilloma virus (HPV), has been hailed as perhaps the biggest boon for women since the contraceptive pill. Across the world, including many American states, politicians and activists have proposed laws to make Gardasil mandatory for girls in their early teens or younger. Australia has already started a national programme of free vaccines for young girls.

All that sounds a bit premature — and rightly so. As we find out more about this vaccine, including new studies in last week’s New England Journal of Medicine1,2, it’s clear we simply don’t know enough about it to be giving it to young girls en masse.

No periods. Fullstop.

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(This post appeared on Nature Medicine’s Spoonful of Medicine blog on May 9, 2007.)

If you could take a pill that completely eliminates your periods, would you?

Women taking Seasonale have four periods a year.

Turns out the answer is rather emotional for many people. I say people because some men seem to have strong feelings about it too (as they do about many things that affect only women).

Most contraceptive pills entail 21 days of hormones, followed by 7 days of placebo. What follows is a period only in name, since women don’t actually ovulate while taking the pill. This fake period was designed into the pill when it was first introduced in 1960 so as not to freak women out too much.

This month, the FDA is evaluating Wyeth’s Lybrel, with which women would take hormones for a full year or longer (Women taking Seasonale, available now, still have 4 periods a year), remaining period-free throughout. And this is getting many experts riled up: those who think it might be unsafe, yes, but also those who argue that it is culturally dangerous–as in, it redefines femininity! Ahem.

Last year, I summarized the pros and cons of pills like Lybrel for the mainstream magazine Women’s Health, but briefly: the new pill could be healthier, because it cuts down on the hundreds of periods women now have on average as compared with about 50 or so not too long ago. On the other hand, we don’t really know what the long-term consequences might be.

So, what would you choose?

FDA approves vaccine for cervical cancer

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(This article was #27 in Discover Magazine’s top 100 stories of 2006.)

The cervical cancer vaccine—the second vaccine after the hepatitis B vaccine to target a sexually transmitted disease—debuted this year. In June the Food and Drug Administration approved the vaccine, distributed under the brand name Gardasil, for girls and women ages 9 to 26. The European Union and Australia have also approved the vaccine, and a similar product to be manufactured by GlaxoSmithKline is in the works.

The vaccines work by inducing antibodies to the human papillomavirus, or HPV, which can cause genital warts and cervical cancer. In large clinical trials, the vaccines were more than 99 percent effective in preventing HPV infection. Like most vaccines, however, they are most effective among people who have not yet been exposed to the virus. An American government advisory panel therefore recommended that Gardasil be given routinely to 11- and 12-year-old girls—and in some cases to girls as young as 9.

Every year cervical cancer kills more than 230,000 women worldwide, about 80 percent of them in developing countries. In the United States, the disease claims the lives of roughly 4,000 women each year. Based on a mathematical model, GlaxoSmithKline claims that immunizing every 12-year-old girl with the vaccine would reduce U.S. cases and deaths from cervical cancer by 70 percent. But some conservative groups have opposed the vaccine, saying it might promote sexual activity.

Poor countries also face a more practical obstacle. The full course of the vaccine—three shots over a six-month period—costs about $360. “The biggest issue will be price,” says John Schiller, a senior investigator at the National Cancer Institute, who did some of the early work that led to the vaccine’s development. “It’s the most expensive vaccine we have.”

Big issues from a small child

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(This Opinion column ran on Nature’s news site on January 8, 2007. You can read the original post here.)

How far can a parent go in managing the life of their disabled child? Perhaps too far.

Shock. Even revulsion. These were the main reactions provoked by news stories about Ashley, a nine-year-old disabled girl who has been surgically and hormonally altered by her parents to forever stay the size of a small child. Is such treatment acceptable, asked the world’s press. On instinct, my immediate reaction was “no”.Ashley2006

But instinct isn’t always a good judge of sensitive ethical issues. So I learned more about the situation. The shock has now subsided. But my answer to the question of acceptability is still “no”, albeit for different reasons.

Keeping a child small to help her parents care for her is an untested medical solution to a societal problem — and one that could set a dangerous precedent.

Low-fat diet a bust?

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(This article was #53 in Discover Magazine’s top 100 stories of 2006.)

The largest-ever experimental study examining whether a low-fat diet can prevent cancer and heart disease brought discouraging results. After following 48,835 postmenopausal women for eight years, scientists concluded that cutting fat from the diet doesn’t significantly reduce the incidence of breast or colorectal cancer, heart disease, or stroke. Results of the $415 million trial, part of the National Institutes of Health’s Women’s Health Initiative, were reported in three papers in the Journal of the American Medical Association.

Revised ideas about the role of fat in disease could help explain the murky data, notes Michael Thun, who heads epidemiological research for the American Cancer Society. For example, women in the study cut their total fat intake rather than specifically targeting saturated fats and trans fats, which are now known to contribute to heart disease risk. Cancer researchers are also starting to focus more on risks from obesity. “The evidence base has become very strong that it’s being fat rather than eating fat that’s associated with risk,” Thun says.

He and others plan to follow the women for an additional five years for more information. Meanwhile, the best advice from experts is to eat less saturated and trans fats and more fruits and vegetables.

Birth control pills: No more period

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(This article appeared in the April 2006 issue of Women’s Health magazine. I must say I was a bit baffled by the editors’ (there were many) directions: sound like a wise older sister, but also like a friendly gynecologist who will take you by the hand and explain everything. It was not exactly my bag, but I found (and still do find) the topic fascinating.)

The latest trend in birth control pills is to do away with menstruation altogether. Convenient, definitely. But is it safe?

Jasmine Bhatia hates getting her period, which brings cramps so severe that they extend down her legs, making it hard to walk. “To say it gets bad is an understatement,” says Bhatia, 25, a copy editor in New York City. Bhatia’s gynecologist prescribed painkillers and birth control pills, offering her the option of taking the Pill back-to-back — no dummy pills, no period — every other month. For Bhatia it’s a reprieve, like being sentenced to home confinement instead of prison. “Even having to deal with periods half as often has made a big difference in my life,” she says.

Okay, so not everyone’s period is more torturous than an episode of Breaking Bonaduce. Still, you’ve likely fantasized about how great it would be to dispense with those days of the month when your jeans fit like cellophane, you’re capable of restraining-order-worthy rants, and it takes a small Samsonite to tote around your tampons.

That fantasy is becoming a reality, albeit slowly. Birth control makers are increasingly cranking out products that aim to hit the pause button on your period for months, even years.