Archives for November 2012

Imagine being a young woman in your 30s. You have just received a diagnosis of breast cancer, as more than 10,000 women your age in the U.S. do every year. Other young women your age may get similarly horrifying news — ovarian cancer, leukemia, non-Hodgkin’s lymphoma.

A cancer diagnosis is bad enough, of course. Then you realize something almost as heartbreaking: The chemotherapy and/or radiation you will get in the next few weeks may well render you infertile, wiping out all or most of the eggs stored in your ovaries since before you were born. Saving your life is paramount, obviously. But saving your fertility is a close second. At least as I see it.

Preservation of fertility in a woman who has cancer should be a no-brainer. Isn’t loss of fertility due to cancer treatment on a par, morally and psychologically, with providing a prosthetic limb for someone who has lost an arm or leg due to injury? Or providing anti-nausea medication for someone undergoing chemo? Loss of fertility in this scenario is a direct result – a legitimate side effect – of medical treatment.

Tragically, that’s not how most insurers see it. Nationwide, “most people don’t get coverage,” Dr. Elizabeth Ginsburg, medical director of assistive reproductive technologies at Brigham and Women’s Hospital, told me.

“Some insurers do, some don’t,” agreed Sean Tipton, director of public affairs for the American Society for Reproductive Medicine.

America’s Health Insurance Plans, the insurers’ industry group, says it doesn’t even collect this data from its members. Gee, I wonder why not?

Thankfully, Massachusetts, as usual, is ahead of the curve. It is one of 15 states with laws requiring insurance coverage for infertility treatment in general.

But here’s the catch. Even in states like Massachusetts where infertility in general is covered, many young women faced with a cancer diagnosis are so young that they are still fertile. So they don’t qualify as “infertile,” which is usually defined as a woman of any age who has been trying unsuccessfully for over a year to conceive or a woman over 35 who has tried unsuccessfully for six months.

A couple of insurers based in Massachusetts do have the heart to pay before cancer treatment begins, for one cycle of ovarian hyperstimulation (to help a woman produce more eggs), retrieval of the eggs and freezing of either the eggs or the fertilized embryos if she has a male partner with whom she wants to have a baby. After cancer treatment is over, fertilized embryos can be implanted in hopes of producing a pregnancy. The whole process costs around $12,000.

Until recently, the “official” reason insurers nationwide gave for not covering egg freezing (as opposed to embryo freezing) is that it is “experimental,” fertility specialist Drew Tortoriello of the Sher Institute told me.

But that rationale is history now that the American Society for Reproductive Medicine announced last month that egg freezing should not be considered “experimental” because there is now enough data to show that the technique is reliable for use when medically indicated. (Medical indications include impending loss of fertility due to cancer treatment.)

It’s clear that many young women faced with both cancer and infertility desperately want to preserve their ability to have children. In one 2004 study of young women with breast cancer, 57 percent recalled having substantial concern at diagnosis about infertility after treatment, and many said this concern influenced their treatment decisions.

“This was eye-opening for medical oncologists because they were so focused on the cancer,” said the lead author of that study, Ann Partridge, director of the Adult Survivorship Program at Dana-Farber Cancer Institute.

Frankly, it shouldn’t be all that eye-opening to doctors or insurers. One of the deepest human urges, biologically and psychologically, is to reproduce. It is nothing short of cruel for anyone to deny this hope.

Not surprisingly, the headline about “designer vagina” procedures in a press release this week from BMJ Open, an online publication of the esteemed BMJ (formerly the British Medical Journal) caught my eye — and stopped my coffee cup in midair.

It appears that women are flocking to surgeons for things like “vaginal rejuvenation,” “G-spot amplification,” “revirgination” and “labiaplasty.” According to the BMJ authors, a team from University College Hospital in London, vaginal cosmetic surgery is a growing thing for women who “simply don’t like the way their genitals look.”

Good Lord.

These women are apparently concerned about the visibility of vaginal labia through tight clothing (I must be getting old. Why not just wear looser clothing?). Or, as the BMJ authors put it, they want their labia to look “sleeker” and “more appealing.” The women in question seem to have an “awareness – courtesy of a partner or magazine pictures – of larger than normal labia.” (What kind of partners would say….oh, well.)

There is an actual point, beyond sheer prurient interest, to the authors’ concerns. They are worried, with good reason as I discovered, that Internet ads touting these vaginal cosmetic procedures are of “poor” quality. That is, they often contain inaccurate and misleading information. (Are we surprised?)

So, I put my coffee cup down and did what the authors did: I Googled their search term, female genital cosmetic surgery, and sure enough, up popped endless ads shamelessly appealing to, or dare I say, “creating,” female genital insecurities. For the record, I get that some older women who’ve had multiple babies may have urinary incontinence or other legitimate complications of childbirth – or even plain aging – and might want to have things tightened up a bit. Vaginas, like the rest of our bodies, can get droopy with time.

But young women and girls worried that they don’t look right? First, it was that women’s breasts were too small – or too big. Now, it’s genitals, too? In truth, there’s as much variation in labia length as in many other physical characteristics.

What really gets me about all this is that these made-up genital insecurities make a mockery of the real, and serious, issue of female genital mutilation in developing countries. In our supposedly modern societies, women are persuaded that they don’t “look” right and are choosing surgery they probably don’t need, while girls in Africa are still forced into genital mutilation.

In reality, “Designer vaginoplasty” and “G-spot amplification” are, as the American College of Obstetricians and Gynecologists put it in a 2007 statement, “not medically indicated, and the safety and effectiveness of these procedures have not been documented.”

Which is pretty much what the British researchers concluded.

It doesn’t take a genius to question the wisdom of all this unnecessary female genital cosmetic surgery, but I called one anyway, Dr. Nawal Nour, director of the Ambulatory Obstetrics Practice at Brigham and Women’s Hospital.

Nour won a MacArthur Foundation “genius” award in 2003 for her work on repairing the surgical and emotional damage done to women through female genital mutilation. In fact, she has devoted her entire life to treating the medical complications and legal issues surrounding female genital mutilation and founded the African Women’s Health Center in Boston.

She feels that female genital surgeries, with proper counseling, may make sense if women “have truly physiological complications after childbirth” or when there are other “medical indications to perform some of these surgeries.”

But she is appalled that “more and more girls and women are thinking that they are abnormal,” and that the definition of what is considered “normal” for the length of labia has been getting smaller and smaller.

In the U.S., Nour said, it has been illegal since 1996 for surgeons to knowingly excise, that is, to surgically remove, all or part of the labia in someone under 18. As part of a survey, she called a number of surgeons and asked if they would do it anyway in girls this young. Many said yes, she said, “even though under the law that is considered genital mutilation.”

“Genital mutilation” or “female genital cosmetic surgery.” It’s a fine line, indeed. And tragic, by whatever name you call it.

I have just finished writing a book on chronic pain and, although I didn’t initially plan it this way, I ended up devoting an entire chapter to marijuana because, as I did my research, I found considerable evidence that marijuana is both safe and reasonably effective at relieving pain. In fact, if a person taking opioids (narcotics) for pain relief also smokes marijuana, the dose of opioids needed can often be reduced.

For historical and political reasons, the federal government persists in classifying marijuana as a Schedule I drug, which means it is deemed to have a “high potential for abuse” and no recognized medical usefulness. Both parts of this are false.

Although the government has stymied marijuana research in this country, there has been significant research from other countries on the risks and benefits of inhaled marijuana.

Marijuana used alone is actually remarkably safe, in part because, unlike other drugs, including opioids, it does not cause respiratory depression.

In fact, there are simply no deaths – zero – from marijuana alone, according to the federal Centers for Disease Control and Prevention. This is in stark contrast to deaths from alcohol (80,000 a year), tobacco (443,000 a year), even NSAIDS, non-steroidal anti-inflammatory drugs, which kill an estimated 7,000 to 10,000 American adults every year.

Nor does marijuana seem to be the “gateway” drug that opponents claim it to be. A 1999 report from the Institute of Medicine, part of the National Academy of Sciences, found that marijuana is not the substance that gets teenagers on the road to substance abuse – underage tobacco and alcohol use are.

To be sure, marijuana, like any other drug, is not without risks. Some studies show an increased risk of schizophrenia, especially in young people predisposed to psychosis, though even here the research is mixed. Other studies, including research at McLean Hospital, show cognitive deficits with early adolescent heavy use, though other studies suggest these changes may be reversible once marijuana use stops.

Even the National Institute on Drug Abuse acknowledges that, as one official told me, “marijuana does not kill directly,” though it can contribute in other ways to risky behavior such as traffic accidents, particularly if mixed with alcohol.

Those are serious risks, especially for young people whose brains are still developing. These risks are much less relevant for adults pain patients.

Opponents of medical marijuana often argue that making marijuana legal for medical use is a wedge toward outright legalization. But even if it were legal, marijuana could still be regulated like alcohol and tobacco to discourage under-age use.

Frankly, in an ideal world, I would go a slightly different route: I would classify marijuana as a dietary supplement like Echinacea. This, of course, will never happen. But if marijuana were viewed as a dietary supplement, it would be subject to post-marketing surveillance by the US Food and Drug Administration.

If a given brand were linked with harm, producers could be forced to withdraw that brand from the market. The government enforce accurate labeling so that consumers could be reasonably sure that the marijuana was grown, dried and packaged safely, without molds such as aspergillis, pesticides, formaldehyde or other toxins. Labels could also provide accurate information on the ingredients – for instance, how much psychoactive THC (tetrahydrocannabinol) and non-psychoactive CBD (cannabidiol) each batch contained.

I am certainly not advocating that we become a nation of potheads. But for adults in pain, medical marijuana should clearly be a legal option.

This post originally appeared in WBURs CommonHealth blog.

As the controversy continues to swirl over sex change surgery for convicted murderer Michelle Lynn (formerly Robert) Kosilek (there’s a hearing this month on whether taxpayers should pay for her electrolysis), I got to wondering about some of the questions this case raises.

Certainly, prisoners are entitled to basic health care. But do we really owe her a sex change operation?

Especially if — as some of the evidence I uncovered suggests — it wouldn’t leave her in substantially better mental health than she is in today?

I confess: I’m not sure I would even ask this question if I were sympathetic to her in the slightest. But I’m not. She is a convicted murderer. She is in prison for a reason, and a very good one.

But, that aside, back to my quest for facts: How well does sex reassignment surgery (SRS) work in the first place?

Here’s some data: There was a major study in 2011 by the Karolinksa Institute.

Using data from Swedish registers, they studied 324 people — 191 male-to-females and 133 female-to-males — who had SRS between 1973 and 2003. For each SRS patient, the researchers randomly selected 10 people from the general population who had not had SRS. From this group, two control subjects were matched to each SRS patient — one with the same sex and age as the patient at birth and the other, with the same age and sex as the patient after SRS.

All-cause mortality was three times higher for people who had SRS and deaths by suicide were also higher. People who had the SRS were also at higher risk for hospitalizations for non-gender related psychiatric problems. It’s not totally clear why people who get the surgery get worse. But the authors conclude,

“Persons with transsexualism, after sex reassignment, have considerably higher risks for mortality, suicidal behavior and psychiatric morbidity than the general population. Our findings suggest that sex reassignment, although alleviating gender dysphoria, may not suffice as treatment for transsexualism…”

So, in other words, the surgery does get rid of “gender dysphoria,” meaning deep unhappiness with one’s biological sex. But it doesn’t seem to help much with other mental health issues, including suicidality.

If that’s true for Kosilek, I wondered, why should taxpayers foot the bill?

The Karolinksa researchers did caution that for SRS patients their findings didn’t necessarily mean the surgery didn’t help at all: “Things might have been even worse without sex reassignment.”

I wouldn’t be so swayed by this pessimistic study except that it’s methodologically much better than previous research, including an oft-cited 2010 Mayo Clinic study.

Researchers performed a systematic review and meta-analysis of 28 studies of hormone therapy and sex reassignment involving 1093 male-to-females and 801 female-to-males.

The studies were observational and most lacked controls. Overall, in the Mayo review, 80 percent of people who had the sex reassignment reported significant improvement in gender dysphoria, as well as significant improvement in psychological symptoms and quality of life.

But, as the Mayo researchers themselves note, all of these conclusions were based on “very low quality evidence due to the serious methodological limitations of included studies.”

In data-speak: garbage in, garbage out.

Ben Klein, senior attorney for Gay and Lesbian Advocates and Defenders, doesn’t see it that way. “All studies have limitations,” he told me, “but if you look at the overwhelming trend of a significant number of studies, all point to the same conclusion – that sex reassignment surgery is the only effective treatment for gender identity disorder.”

But I’m not buying that — pooling a bunch of bad studies doesn’t yield good data.

It makes more sense to wonder why the surgery doesn’t have better long-term results. One reason, suggests Renee Sorrentino, a Harvard Medical School psychiatrist who runs the Institute for Sexual Wellness in Quincy, is that by the time a person seeks sex change surgery, gender dysphoria has usually been a problem for a long time and is often accompanied by significant traumatic experiences, including bullying. Those deep psychological wounds may not be so easily healed.

That said, I know a transsexual woman, Sara Herwig, who has been helped by the surgery and now feels like a “congruent person.” So I called her.

“The thing to remember about SRS or general reconstructive surgery is that it is not a silver bullet,” she said. “You still have to deal with everything in life that everybody has to deal with. It’s not going to have a big impact on clinical depression or other kinds of mental illnesses.”

Fair enough, but did she believe taxpayers should be on the hook for Kosilek’s surgery?

Herwig has mixed feelings, “My initial reaction is that nobody paid for mine. Health insurance doesn’t cover it. I understand her desire to have the surgery, but … vast numbers of other people I know have had to pay for their own. I do think there need to be reforms in health insurance so such surgeries are covered. But I don’t think the taxpayers should pay for someone to have that kind of surgery.”

In the end, I concluded, neither do I.

And as for this month’s hearing regarding hair removal?

Give me a break. I have a couple of eyebrows I’d like taxpayers to have waxed for me.

(This post was originally published on WBUR’s Cognoscenti blog)