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For Transgender Patients, a Growing Fight Over Health Coverage

One transgender woman’s effort to get a mammogram highlights larger confusion over care.

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A woman waits outside the mammogram area during a free health clinic at the Los Angeles Sports Arena in September 2012. When a transgender woman in Denver tried to get a mammogram at a state-run clinic, she was turned away because she was not "genetically female." Her experience highlights a larger confusion over care for transgender men and women. (Robyn Beck/AFP/GettyImages)

Last spring, Jennifer Blair, a 62-year-old aspiring therapist who lives in Denver, noticed the kind of changes in her breast tissue — rapid, abnormal growth on one side of her chest — that would frighten any woman and alarm any physician.

Blair didn’t have health insurance, but because she didn’t earn much money, she qualified for Colorado’s state-run Women’s Wellness Connection program, which funds free mammograms through Planned Parenthood and other health-care providers.

Or so she thought. Blair was born a male, undergoing gender-reassignment surgery a decade ago. But the Centers for Disease Control and Prevention, which pays for the mammogram program, requires clients getting free screenings to be “genetically female.”

Blair eventually was able to scrape together the $400 cost of the mammogram, which ruled out cancer. But she said the frustration and humiliation still linger.

“It was so patently discriminatory and wrong,” she said.

Right or wrong, Blair’s predicament is one that advocates say more and more transgender people are confronting.

“This is just one example of the minefield that health care can be for a transgender person,” said Shane Snowdon, director of the Human Rights Campaign’s Health & Aging Program (and before that, founding director of the Center for LGBT Health & Equity at the University of California San Francisco). “It’s very seldom that you don’t encounter some kind of problem accessing care.”

It’s a considerable conundrum, given the complicated medical issues many transgender people face. In Blair’s case, these include exposure to large amounts of estrogen, the side effects of which have been found to include an elevated risk of breast cancer and life-threatening blood clots.

Breast cancer in the transgender population, though rare, is probably significantly underreported, according to the American Cancer Society. Indeed, Susan G. Komen for the Cure, the most prominent breast cancer organization in the country, urges transgender people to immediately report “any change in the look and feel of a breast.”

Adding to the complexity, transgender people still require the same kinds of medical care as they did before gender reassignment — pap smears for genetic females, for example, and prostate exams for genetic males. Transgender men can still get breast cancer following mastectomy or ovarian cancer if they haven’t had their ovaries removed; transgender women can still get prostate cancer.

This can be hard for providers and insurers to wrap their heads around, according to advocates. Once transgender people go through reassignment surgery, their sex change is marked in their medical records, and insurers often don’t want to pay for tests and treatments pertaining to the sex that a patient used to be, advocates say. In fact, people fortunate enough to have insurance through their jobs frequently discover that the fine print of their coverage explicitly bars paying for cross-gender medications or care.

That’s what happened last spring, when Aetna initially denied coverage for a New Jersey transgender woman’s mammogram. The company later backed down and apologized.

“That’s very common,” said Ilona Turner, legal director at the Transgender Law Center in Oakland. Indeed, a 2010 Institute of Medicine report found that when medical providers were aware of a patient’s transgender status, the patient was significantly more likely to be harassed or denied care.

Perhaps more common for transgender people, however, is the situation Blair found herself in: without any insurance whatsoever. In her case, a heart condition made her uninsurable, she said; for others, being transgender can itself be considered a pre-existing condition. And for still others, the decision to undergo gender reassignment requires them to leave their job or risk being fired, either outcome robbing them of their insurance.

The result is that transgender people are much more likely to be poor — and in poor health. In Colorado, male-to-female transgender people are four times more likely to be impoverished than the general population, a 2011 survey found.

Blair is exactly the kind of person that Colorado’s WWC program should be helping, said her lawyer, Sarah Parady, who has filed complaints with the state’s Civil Rights Division and the U.S. Department of Health and Human Services, which includes the CDC.

The Colorado Anti-Discrimination Act specifically bars discrimination against transgender people in places of “public accommodation” such as a health clinic, Parady said. Whatever the CDC says, “that does not excuse the WWC program from complying with Colorado law,” Parady said. She also noted under the CDC’s interpretation, male-to-female transgender people don’t qualify for free screenings — but female-to-male transgender people do. She called that distinction “inexplicable.”

In its written response to the complaint, the state Department of Public Health and Environment, which runs the WWC program, said it was bound by the CDC rule.

Meanwhile, Jacqueline Miller, the medical director overseeing the screening program for the CDC, has said the agency was only complying with a 1990 statute, the Breast and Cervical Cancer Mortality Prevention Act. “CDC’s position has been that federal funds can only be used to screen clients born as women since the law establishing the program specifically states women,” Miller said in an email to Colorado officials in July. To avoid denying necessary care, Miller added, the CDC encourages grantees “to identify other payment sources... that are not restricted to women.”

Now the Human Rights Campaign and the National Center for Transgender Equality have entered the fray. Last week, the groups sent a letter to the CDC’s director, Thomas Frieden, urging him to bring the agency’s interpretation into compliance with Affordable Care Act guidelines that prohibit discrimination on the basis of gender identity or sex stereotyping.

The CDC policy “is clearly discriminatory, dangerous to the health of an at-risk population, inconsistent with prevailing recommendations for transgender health care and at odds with current federal policy ensuring access to care for transgender individuals,” the letter said.

On the phone, Snowdon of the Human Right Campaign was even blunter, saying that the CDC rule “runs afoul of all contemporary medical thinking.”

In an email, a CDC spokeswoman said the agency is reviewing the letter and will respond “as soon as possible.”

“Blair was born a man, undergoing gender-reassignment surgery a decade ago.”

Blair was assigned as male when born, she is a woman regardless of this assignment.  Having surgery didn’t make her a woman, it simply changed her body.

Gentic females/males is not the way to talk about trans men needing pap smears and trans women needing prostate exams.  They require these things because they have those body parts,that doesn’t make them genetically male or female.  There are some “genetic males” with XXY crhomosomes that have uteruses and have children.

Well, Blair isnt really a woman, so the policy makes sense.

Barbara Brooks

Oct. 22, 2013, 1:25 p.m.

Psychiatry has really let the transgender people down by not acknowledging it as a disorder.  If people are alienated from their body, they need help.  Maybe they have pesticide and chemical residues or maybe they were raised to favor a certain gender.  In any case, gender reassignment is not the answer.  It exposes these people to incredible physical risks and doesn’t really change their gender.
We need more research to get to the bottom of this disorder, rather than just letting people suffer gender confusion and dangerous hormonal treatments.  There has to be a better way to deal with this problem, and it will take research to find it.

Allison Grant

Oct. 22, 2013, 1:33 p.m.

Gender Dysphoria is not a disorder. Having a gender variance is not a disorder.  Trans people are not mentally ill because they don’t align with gender norms.  They experience dysphoria because of their bodies, but they aren’t mentally ill.

http://www.beyondchron.org/articles/Being_Transgender_is_Not_a_Mental_Disorder_6948.html

“There are some “genetic males” with XXY crhomosomes (sic) that have uteruses and have children. “


While I agree that parts possessed would be a better system for determining who needs what coverage, that quote is simply not true.  The vast majority of people who are born 47, XXY (without a separate disorder of sexual development or an SRY deletion) have what is called Kleinfelter Syndrome which results in males who are usualy tall, thin, and infertile.

There are a few examples of a XXY females in medical literature but examples I’ve found are either too young to confirm fertility, confirmed infertile, or it is noted in the paper that they lack ovaries.  Some of these females may have successfully carried a pregnancy through IVF and hormone management but its pretty misleading to suggest that they just have children.

Errr…don’t men get breast cancer?

I mean, sure, there’s a whole issue surrounding the transsexual aspect, here, but it really shouldn’t matter what genitals the person had at birth and/or has currently.  The tissue can still become cancerous, and refusing to cover the test when there’s a likely problem is wildly reckless.

Ovarian cancer, sure, I can understand the resistance.  But debating for breast cancer shows some serious deficiency in intellectual ability.

Allison Grant

Oct. 22, 2013, 2:28 p.m.

You’re right, there’s only one.

http://www.ncbi.nlm.nih.gov/pubmed/11173857

My point still stands, “genetic male/female” is an excuse to treat trans people horribly.

The only cure for all uninsured is to have universal health care without the insurance companies.  It would also be cheaper for the average citizen.

Lowell Boardman

Oct. 23, 2013, 2:51 a.m.

Male Breast Cancer does occur. While Male Breast Cancer may be less likely statistically, Medscape and other professional resources do publish articles regarding Male Breast Cancer. A man going through this process is as terrified as anyone would be. Anyone denying someone access to Breast Cancer medical procedures based on sex/gender preference is ripe for a lawsuit via the EEOC.

I am an MTF Transsexual and when I lived in California, there were no issues at Kaiser Permanante about getting a mammogram.  Mind you I was part of my employers group when I changed to Kaiser. I was spared the issues of the individual market.

It almost seems the insurance industry is trying to make things so bad that the government will be forced to bring in single payer.

I am in Canada now and I am indicated as female for gender on my medical records. However there is a notation I am trans on the record. I was told that was there so doctors could also authorize PSA tests and prostate exams. To make sure nothing was forgotten.

This article is part of an ongoing investigation:
Sex and Gender

Sex and Gender

ProPublica's Nina Martin reporting on American systems and institutions that fail or mistreat people on the basis of their gender or sexuality.

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