Transgender Health Services And European Health Insurance: Advocacy And Progress – While not all trans people opt for hormone therapy, a recent study estimated that 9% of those who did obtain hormones from unlicensed sources, including friends and unregulated online pharmacies.NBC News / Getty Images
Max Adomat considers themselves lucky. Adomat, 26, who is non-binary and uses they/them pronouns, has been on a steady regimen of feminizing hormones for the past six years. They also began their gender transition in New Jersey, a progressive state where clinics offering transition-related medical care are commonplace, and name changes are confidential, they said.
Transgender Health Services And European Health Insurance: Advocacy And Progress
But Adomat was still found to be sourcing and self-administering gender-affirming hormones from unregulated, and often illegal, overseas online pharmacies instead of licensed medical offices. The reason, Adomat said, was a lack of both health insurance and money: When they began transitioning, their low-paying jobs in the food service industry didn’t provide insurance, and they couldn’t afford the high costs of transition-related care. — including hormone therapy and routine doctor’s appointments — without it.
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Although they knew the risks — which, without supervised care, could include increased chances of blood clots, heart attacks and some cancers — Adomat felt their window for a successful transition was closing, they said.
“I just kind of decided, ‘I’m going to do it, and if and when I can see a doctor somewhere along the way, sure, but I’d rather do it now and face those consequences,'” they recalled , adding that their alternative at the time was to continue to “live miserably”.
Max Adomat, 26, has been on a steady regimen of feminizing hormones for the past six years. Max Adomat
There are approximately 1.6 million transgender teenagers and adults living in the United States, according to a report published last year by UCLA’s Williams Institute. While not all trans people opt for hormone therapy, a 2020 study published in the Annals of Family Medicine estimated that 9% of those who did obtained hormones from unlicensed sources, including friends and unregulated online pharmacies.
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Interviews with health care providers and attorneys, as well as transgender individuals who use or have used a do-it-yourself approach to transition, indicate the reasons why people choose the non-prescription and self-administration route vary and include cost savings , health care accessibility , medical discrimination, and the desire to choose which hormones and doses are involved in the process.
However, a DIY approach is not without its health and legal risks. Despite the risks, some experts predict that this approach will become even more common given the current political climate: Nearly 20 states have already passed laws blocking access to gender-affirming care for minors, and other states have proposed measures that would limited for some adults.
A monthly supply of common feminizing hormones — including estrogen and anti-androgens — can cost patients up to $115, according to GoodRx, which tracks U.S. drug prices. Male hormones, including injectable testosterone, are typically less expensive, costing about $40 to $90 per month. However, through unregulated online pharmacies, a month’s supply of these feminizing and masculinizing hormones can be purchased for as low as $8, plus shipping.
While price sensitivity to health care costs is not unique to transgender people, this community faces higher rates of economic hardship and poverty, with 1 in 3 trans adults reporting an annual household income below $25,000, according to a 2021 report from the liberal thinking. tank Center for American Progress.
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Samme Qandil, 28, was on medically supervised hormone treatment for three years, but when she got a new job and changed her health insurance, she couldn’t pay her new provider’s $300 copay for a six-week supply of injectable hormones not. Faced with high co-pays and a nationwide shortage of injectable estrogen, she decided to start buying her hormones from an unregulated online pharmacy recommended by her friends.
While Qandil, now a graduate student in Oregon, said she doesn’t have many qualms about obtaining and administering hormones herself because she knows others who have gone through the process, she still undergoes regular blood tests to ensure her estrogen levels within a safe range.
The prescription route costs her nearly $700 a year for medication and $400 in appointment co-pays, Qandil said — more than twice what she now pays for a two-year supply of hormones and related expenses such as estrogen blood tests.
While hormone replacement therapy with a DIY approach is “cheaper and technically more accessible,” Qandil said, orders from overseas pharmacies can be unreliable, with some packages of unregulated hormones being seized at the U.S. border. But, she added, DIY is cheaper even with the sunk costs, and she even has the ability to replenish an annual supply to ensure the hormones don’t run out during a shortage or customs confiscation.
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“In an era when patients may have no choice but to ‘DIY’ their transitions, as is the case with abortions in many states, it may be important for them to know that there are ways to do so that is generally less risky.”
Stephanie Coiro, a clinical social worker at Northwell Health’s Center for Transgender Care in New Hyde Park, New York, estimates about 10% of her transgender patients have tried to get hormones without a prescription at one time or another. She said this route could cut their costs by more than 50%. Although, she stressed, those with a prescription, even if they don’t have health insurance, can get testosterone or estrogen for $20 to $30 a month at stores like Target and Walmart with manufacturer coupons.
For those without health insurance, anything out of pocket, including doctor’s appointments, is “incredibly expensive,” Coiro acknowledged. In addition to price concerns, she said recent shortages of hormones, such as testosterone, may also drive patients to obtain medication through non-prescription drugs.
The cost of hormones is often one of many expenses associated with a transition, according to experts and those who receive transition-related care. And a number of transition-related services and procedures are typically not covered by health insurance, including hair removal, which may be mandatory for some gender-affirming surgeries; therapy visits for referral notes, which are typically mandatory for prescriptions and surgeries; and gender-affirming facial and breast surgeries.
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Dr. Uri Belkind, the associate director of adolescent medicine at Callen-Lorde Community Health Center, an LGBTQ-focused health clinic in New York City, called the long list of transition-related expenses a “transgender tax” that can cost trans people hundreds of thousands of dollars over their life time.
Across the pond, in the UK, Alicia Tuplin West, 19, turned to unregulated online pharmacies for both cost and effectiveness. While England offers free gender-affirming care through a publicly funded healthcare system, West, a university student, said she faces a waiting list of up to several years through England’s National Health Service (joining around 26,000 others, according to The Guardian). Unwilling to wait and unable to afford a private health care alternative that costs 1,000 pounds a year ($1,250), West bought hormones through an online pharmacy, cutting the price by 90%, she said.
“The traditional way, it’s all socialized; it’s all paid for by my taxes,” West said. “However, I would argue that the traditional way is like a myth – the idea of getting treatment from the NHS – if you want to move into this decade.”
Most US states still allow minors to obtain gender-affirming care with parental consent, and for those over 18, this type of care is still legal in all 50 states. However, recent years have seen an unprecedented wave of state laws that seek to ban or limit transition-related care, especially for trans youth.
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Eighteen states now have laws on the books that prohibit or limit the prescription of puberty blockers and hormones to minors, though a federal judge struck down Arkansas’s law last month, and judges have struck down laws in Alabama, Florida, Indiana, Kentucky, Oklahoma and temporarily blocked. Tennessee. At least two dozen other states are considering such measures, and a few, such as Tennessee and Oklahoma, have considered bills that would limit this kind of care for some adults.
These legislative pressures make legal access to gender-affirming care nearly impossible for some people, three experts told NBC News, which could lead them to unregulated online pharmacies.
Belkind said this recent legislation “absolutely” has the potential to send more transgender people online to seek hormones. He also pointed to a recent request by Florida Gov. Ron DeSantis, a Republican, asking state universities to send information to the governor’s office about students who have sought or received treatment for gender dysphoria.
“People are not going to want to be on those lists for obvious reasons,” Belkind said. “They may not even disclose to their medical providers, if they’re seeking medical care for other things, that they’re on hormones.”
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Dr. Danielle Brooks, an endocrinologist at Northwell Health’s Center for Transgender Care, said state legislation limiting transition-related care is likely to push more people, including minors, down the DIY path.
“I think more and more people are aware of the road,” Brooks said. “I do think it will be something that will increase over time, and it’s probably increasing now.”
Dr. Joshua Safer, director of
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