LGBTQ people already face misdiagnosis, harassment, and refusal of treatment by the medical establishment. Trump’s Dept. of Health and Human Services is about to make it much worse.
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A large part of my career in medicine has been dedicated to conditions of the vagina and the vulva. In the late 1990s, soon after I started practicing in Kansas City, Kansas, I received a call from another doctor wondering would I accept a specific patient?
This was a bit unusual. Sometimes referring clinics would ask if I could possibly see an uninsured patient for free. That was not the case. This patient, a trans woman, was having medical issues with her vaginoplasty that was done in another country. The clinic, the kind that survives on government grants and goodwill, was a safety net for people who could not access care for other reasons, typically finances or prejudice.
Of course I would see this woman. She had a vaginal health concern and that is my area of expertise. It didn’t occur to me not to see her.
Had other doctors really said no?
Apparently yes. Several.
This patient, like others I would see in Kansas, had been forced to fly to another country and pay out-of-pocket for her gender-affirming surgery. In addition, her follow up care had been in the margins of the health care system when she could afford it.
Over the years I have seen many trans women with vaginal concerns and because many patients who have been disenfranchised by the medical system develop a robust whisper network, trans men with vaginal health conditions.
I am fortunate to work in a system where trans care is medical care. My electronic medical records inform me of a patient’s legal sex and their pronoun of choice. There is a clinic dedicated to transgender health with experts in hormonal therapy and gender-affirming surgeries. And I am still available for the seemingly unsolvable vaginal problem, as I am for every patient.
For most of my patients, these services are covered by their health insurance although co-payments add up and I’m sure there are barriers and prejudice that I don’t see.
I am acutely aware that this is not the experience for many trans patients. And it is poised to get a lot worse.
The Department of Health and Human Services (DHHS) is proposing a change to the nondiscrimination interpretation of Section 1557 of the Affordable Care Act (ACA). The specific section at risk is the language prohibiting discrimination in health programs funded by the federal government based on race, national origin, disability, age and, sex.
Specifically, the interpretation of the word sex.
In 2016, under the Obama administration, guidance was issued that the definition of sex for DHHS purposes included gender identity, thus providing protection for LGBTQ people from discrimination based on sex stereotyping and gender identity. This language also protected people from discrimination based on a history of pregnancy termination.
Even now, with Section 1557 as currently interpreted, transgender and gender non-conforming people have serious issues accessing health care. Studies tell us that 56 percent of lesbian, gay and bisexual (LGB) people report discrimination by health care providers and that number is 70 percent for transgender and gender non-conforming people. Experiences range from verbal and physical harassment to refusal of care. Mistreatment is specifically cited by 23 percent of transgender people for not seeking care when needed.
This is in addition to the barriers transgender people already face, many of whom report having to educate their medical professionals on the trans-specific care they need. There are also insurance barriers, for example in one survey says that 55 percent of transgender people who sought coverage for transition-related surgery were denied.
As a result, 50 percent of trans men and 33 percent of trans women delay or avoid preventative care and many report avoiding urgent or emergency care when it is needed. The consequences are medically severe.
Without clear, legal protection this situation will only get worse, and not just for trans and gender non-conforming people.
We know from experience that without legal protection to the right to access the full scope of health care that standard medical care can be restricted and denied. Currently, many patients are denied or have difficulty accessing medical care for some reproductive health services at many offices and hospitals within Catholic Health Consortiums, which now run 1 in 6 hospitals in the United States.
Federal law states that no health plans are required to cover abortion—even though according to the medical experts abortion is standard medical care—and the 2014 Supreme Court Hobby Lobby decision spells out that the false belief that a method of contraception is an abortifacient is sufficient reason to deny coverage for that service.
And it’s not just abortion and contraception that are affected. With vague language and no clear legal protection, there are reports of appropriate management of miscarriage and potentially life-threatening ectopic pregnancies being denied in Catholic Health Systems based on the document, The Ethical and Religious Directives for Catholic Health Care Services. The directives that govern these Catholic facilities also restrict fertility treatment.
In 2012, 52 percent of OB/GYNs in a Catholic Health System reported a medical conflict with the religious directives. Meaning, an OB/GYN felt medical care was warranted but forbidden.
I’ve been in that situation with a medically indicated abortion. The panic a doctor feels when they know they can save a life, but are not allowed isn’t easy to describe.
Now imagine being that patient.
Now imagine being transgender and add the extra layer of prejudice and barriers that already restrict care.
If the changes to Section 1557 are accepted it will be easier to discriminate not just against trans and gender non-conforming people, but many patients. The burden outside of trans care will likely be greatest for pregnancy and abortion-related services, contraception access, and screening and treatment of sexually transmitted infections—especially the HIV prevention pre-exposure prophylaxis as well as care of HIV patients. Why? These are the groups that have historically been medically marginalized.
Many of us in medicine have witnessed the burden of prejudice on our patients and have been ashamed of the actions of our colleagues. While I truly believe most physicians want to do the right thing, most still leave large gaps and that is, quite frankly, unacceptable. All physicians should insist on doing the right thing, which is providing every patient with the medical care they need free from prejudice and discrimination.
I’ve listened to stories from patients who have been denied care and it is cruel and wrong. Knowing that people in my own profession contributed fills me with shame. I’ve seen people struggle to get contraception access and screening for sexually transmitted diseases. I’ve cared for women who flew across the country to get abortions they couldn’t access in their own state. I’ve seen trans women turned away just because of who they are.
While the change in the definition of sex proposed by the DHHS will not directly legislate discrimination, it will sow confusion by fostering the perception that such discrimination is lawful, allowing it to fester and grow and directly affect access to health care. And our recent medical and legal history in the United States with regards to abortion, contraception, and miscarriage makes it clear that vague definitions are ripe for abuse. And the fact that many LGBTQ patients are already experiencing discrimination and difficulty accessing services tells us they need more protection, not less.
Those at the greatest risk are transgender and gender non-conforming people. However, the language changes in combination the Conscience and Religious Freedom Division (created by the Trump administration within the DHHS to protect a health care worker’s right to discriminate against patients), and the growing network of Catholic hospital systems could put many more people at risk. That’s one of the problems with vague definitions in medicine, you never how they will be interpreted, which is exactly what the Trump administration hopes to encourage.
Whisper networks have no place in medicine, and discrimination never stops with the most vulnerable, they are just the first targets. People need the medical care that they need. It’s really that simple. Or rather, it should be.
DHHS is taking comments on the proposed changes until midnight tonight. I urge people to voice their concerns using this link from the Human Rights Campaign and after the time for comments closes to call their Senator or Representative and voice their concern.
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