Andrew Halbur, a pharmacist specializing in HIV, lost a patient he adored when she stopped taking her antiviral meds.
The patient, in her mid-thirties, was a transgender woman (male-to-female, or MTF) who was taking estrogen, a female hormone. Transgender women on hormonal therapy normally take a high dose of estrogen, but if they’re also on anti-HIV medications, they sometimes have to take an even higher dose. This increases the risk of having a complication.
It appears that she stopped taking her HIV medications, including Kaletra, but did not adjust her estrogen to a smaller dose. Within two months, she had died of a stroke.
“She was absolutely one of my favorite patients. She was a riot,” says Halbur.
Halbur works for Walgreens Specialty Pharmacy at the Howard Brown Health Center in Chicago, which serves the gay, lesbian, bisexual, and transgender community. “We think three patients had strokes because they stopped HIV drugs and their estrogen went super high,” he said. Two died and the third survived, but with complications, including paralysis on half of her face.
Paralysis on one side of the body is common with strokes, which are similar to heart attacks, but occur in the brain. Slurring of speech and walking with a limp, as well as disfigurement, can result. Strokes are commonly caused by blood clots, and high levels of estrogen increase the risk of a blood clot. Like heart attacks, they may be so minor that a person doesn’t realize they had one, but the risk of more serious trouble later on is increased.
“They have to really understand the safety issues of hormones,” says nurse practitioner Bethsheba Johnson of the Luck Care Center on the far South Side of Chicago. “Estrogen, as we know, has side effects. It can cause blood clots and other things. Then if they’re on estrogen and HIV-positive, they might end up with a higher dose, which can be dangerous with blood clots. Blood clots, cardiac events, pulmonary embolism—they can die. We tell them they can’t smoke if they’re on estrogen, because it increases the risk of blood clots.”
The treatment protocol produced by the Tom Waddell Health Center (TWHC), which focuses on transgender care as part of the Department of Health in San Francisco, reported that, “A number of them [their patients] obtained [hormones] on the street (often illegally imported) or from a few unscrupulous medical providers who administered drugs but did not monitor their patient’s health or provide preventive services or treatment for other serious health conditions.”
Said Halbur, “People are using illegal drugs or have no medical follow-up, so we don’t know the number of problems that exist. How do you make a connection if she goes to an ER for a blood clot when she never had a primary physician? If someone has a stroke, do they realize it’s from the estrogen, or do they think it’s from using drugs or from aging? We have no data.”
Cross-gender hormone therapy is considered safe, with the proper precautions, and fortunately for transgender people with HIV, there is no conflict in the treatment of both conditions. For example, people can start hormones and HIV therapy at the same time.
According to the “AAHIVM Fundamentals of HIV Medicine” by the American Academy of HIV Medicine, “Experience suggests that there is no reason not to treat HIV-infected transgender individuals in a similar fashion to those without HIV,” although it goes on to say that research is limited.
The manual also refers to a report from a well-known surgeon suggesting that HIV-positive patients seeking transsexual surgery should preferably have at least a 200 CD4+ T-cell count and an undetectable viral load for at least three months.
The Standards of Care of the World Professional Association for Transgender Health (WPATH, formerly known as the Harry Benjamin International Gender Dysphoria Association) states: “It is unethical to deny availability or eligibility for sex reassignment surgeries or hormone therapy solely on the basis of blood seropositivity for blood-borne infections such as HIV, or hepatitis B or C, etc.”
|Cross-gender hormone therapy is considered safe, with the proper precautions, and fortunately for transgender people with HIV, there is no conflict in the treatment of both conditions.
That doesn’t mean that therapy is easy. Like HIV treatment, transgender medical care by itself is often complicated.
To begin with, there is no therapy approved by the U.S. Food and Drug Administration (FDA) for transgender people to ease their chosen transition. Instead, hormones approved for other conditions are prescribed to them off-label.
In off-label usage, a medication that has been shown to have benefit for a condition is prescribed even though it hasn’t been researched and approved for that condition. Male and female hormones are prescribed in transgender therapy because they have been shown to help them in their transition to become more masculine or more feminine.
With limited research, the medical protocols (or standards) that exist for transgender hormonal therapy are those that health care workers specializing in this therapy have pulled together based on their experience. Moreover, insurance—if available—does not cover off-label medications. Furthermore, response to therapy depends on age, genetics, and other individualized factors, making hormonal therapy a matter of extensive laboratory monitoring.
With transgender patients coming to their HIV treatment center (the majority of them MTF), Johnson and her husband, clinic director Dr. William Johnson, tried to quickly figure out what there is to know about therapy in this population. They learned about the many things they needed to measure on a blood test before prescribing hormones. They had to investigate the potential drug interactions between hormonal therapy, HIV drugs, and the anti-depressants she says are very commonly needed in this population. They learned that transgender individuals use high doses of hormones, but that several HIV medications lower the blood levels, calling for even higher doses to be prescribed. And then there’s all the monitoring that needs to be done a month after hormone therapy begins and then regularly after that.
“It’s a whole complex mess of which blood levels to check and on monitoring the dose,” Johnson said.
Shades of HIV
The Johnsons are no strangers to underserved populations, like the transgender community. It’s what their clinic is all about. They were already familiar with the stigma and discrimination facing their patients for being HIV-positive, and often, for being gay.
The adverse conditions facing transgender people are astoundingly similar.
- They face stigma and discrimination for being gender different and sexually different.
- As a result, they are often closeted.
- Their fertility and adoption rights are often discounted or denied.
- They are vulnerable to violence, including partner violence, and threats of outing.
- They may suffer from feelings of being unlovable due to their different status, which in turn may lead them to tolerate unprotected high-risk sex.
- Transgender therapy, like HIV treatment, is expensive and also complex, requiring patient education.
- Like HIV treatment, transgender therapy is life-long.
|For those who can overcome all of the barriers that face them,
the search for hormones might lead to better care.
According to the Waddell protocol, multiple studies have found a high rate of HIV in transgender individuals around the world. Often, reports are looking specifically at sex workers, and find that the rate of HIV is higher in the transgender population.
Although the vast majority of transgender individuals may need some kind of transition, including therapy and perhaps surgery, in order to live a better life, the protocol lists several reasons why transgender individuals lack adequate health care. “This group has historically been averse to accessing medical services for a number of reasons, including: prior negative experience in clinic settings, expectation of discriminatory treatment, the requirements of psychiatric treatment and, in some cases, reticence to reveal illegal occupational activities or undocumented immigration status.” Under psychosocial aspects of care, it states, “Like other marginalized groups, TG patients may present with history of trauma, with resentment against institutions, and with multiple vulnerabilities.”
“While medical attention is increasingly focused on visible transgendered members of various communities, the amount of social support, legal resources, medical research, and, most grievously, legitimate employment opportunities, remain severely limited,” the protocol continues. “Identifying an employment history is important because some patients feel that they are unemployable in mainstream jobs and lean towards sex work because in their mind this is all they can do as a transgender person. Or, they may have had a great employment record, but while transitioning or post transition find it difficult to find work.”
“I think all the care for transgender people is just horrible,” said Johnson. “They’re stigmatized. From the receptionist on—the snickering. It’s still a huge problem. We see gay people get stigmatized, and you have this population that’s even more stigmatized. We get calls from pharmacists who don’t want to give hormones to our patients. They call us and say, ‘This is a man.’ ”
For those who can overcome all of the barriers that face them, the search for hormones might lead to better care. The TWHC protocol reports that, “Treatment with hormones is frequently an incentive for patients to address their HIV disease.”
According to the Academy’s manual, “Transgender individuals are frequently victims of prejudicial behaviors, and are often distrustful of authority figures. Therefore, clinicians should begin taking patient history by using simple courtesies, such as asking patients what name they use and which pronouns they prefer, and always using the appropriate pronoun is essential. Research findings indicate that many transgender individuals engage in high-risk behaviors, including unprotected sex and sex work (many have no other viable source of income); in addition, they are frequently homeless, and have high rates of drug and alcohol misuse (Reback and Lombardi 1999; Clements-Noelle et al 2001). These behaviors can adversely affect the physical and emotional health of individuals with HIV, as well as their ability to adhere to antiretroviral regimens. Social and mental health support is frequently critical to the well-being of these patients… .
“All transgenders, regardless of their HIV status, are medically underserved,” the transgender section of the AAHIVM manual concludes. “Medical training currently does not include education in transgender needs; in addition, clinical research in this population is lacking. Prevention efforts are important to address mental health and substance abuse issues, as well as specific needs for HIV care.”