"More than 25 years after the first report of AIDS, the disease continues to affect the [men who have sex with men] population more than any other in the United States," according to the Center for Disease Control and Prevention's (CDC) Morbidity and Mortality Weekly Report of September 12, 2008.1 New data released by CDC in August showed that annual estimates of new HIV infections are 40% higher than previously thought -- about 56,000 people a year. The communities hit hardest are African American men and women, Latinos, and gay and bisexual men of all races.2 Within these carefully drawn categories, some based on behavioral risk factor and others on racial, gender and sexual classifications, one community heavily affected by the epidemic remains invisible in the eyes of officialdom a quarter century since the first reports of the disease: transgender people.
Studies of female transgender individuals have reported HIV positivity rates ranging anywhere from 19 to 47%.3 A San Francisco study found that while 35% of transgender women were HIV+, only 2% of male transgender individuals were HIV+.4,5
Several factors place transgender women at elevated risk. Melendez and Pinto describe a need among female transgender individuals to feel safe and loved by a male companion, which can lead to risky behavior and elevated risk of HIV acquisition. Stigma and discrimination also correlate with high risk behavior. One study of transgender individuals reported that over half of the participants reported some form of harassment or violence in their lives, and over 25% reported experiencing a violent incident.6
Although not all transgender people take hormones as part of their gender transition, a great many do. For those who are also HIV positive and taking anti-retrovirals, there is "so much that is unknown," says Chloe Dzubilo, a long term HIV survivor and activist on AIDS and trans issues in New York. Dzubilo, who learned of her diagnosis in 1982, says she is shocked at how little is known not only about the interactions of hormones and HIV medications, but also about the long term effects of HIV medications in general. "Knowledge about hormones is a missing piece," says Dzubilo. "It's multi-layered," she continues, noting additional factors, such as Hepatitis C coinfection, lack of access to hormones accompanied by medical supervision, and changing self-perceptions about one's own desires for transition. For so many transgender people who are only able to get hormones off the "street" (often through social networks), the implications of taking hormones without medical supervision presents a giant question mark. "Nobody knew what we were taking," said Dzubilo, "so how do they know what's happening with HIV meds and hormones?"
For Dr. Robert Garofalo of Northwest University in Chicago, "interactions between hormones and HIV therapies are not always the most important consideration." Garofalo runs an adolescent HIV program through Childrens' Hospital and the Howard Brown center, and has worked with transgender health in the youth and adolescent context for over a decade. He describes overall lifestyle challenges to HIV treatment adherence. Some are no different from those of other patients, while some are unique to trans youth -- the difference between remembering to take specific medications at certain times each day as opposed to getting a hormone injection every two weeks, for example. Garofalo states what many others say -- "there is no official contraindication between HIV medications and hormone therapy." When asked how that is the official medical perspective when so little information exists about the combination of the two, he admits "that's a great question." JoAnne Keatley, Director of the Center for Excellence for Transgender HIV Prevention at the Pacific AIDS Education and Training Center in San Francisco, agrees that "hormones are not contraindicated" for people taking HIV medications.
"There needs to be a paradigm shift," says Dr. B.W. Furness, cofounder of the transgender health clinic at Whitman Walker Clinic, in Washington, DC. "Once that shift happens and there are grant [funding] streams, you will get more data." That criticism is voiced by transgender activists as well as other doctors and researchers. "There needs to be money for research," Furness says, a point Dr. Garofalo of Chicago echoes, noting additional barriers. "It's something National Institutes of Health, clinical trials networks, pharmaceutical companies should get interested in," yet being on "hormone treatment might make a trans person excluded from a trial. Even if they're not [explicitly] excluded, they're probably underrepresented similar to adolescents, so for trans adolescents, it's a double whammy."
Despite the shortage of clinical data, experts in the field who have published on the subject have come to similar conclusions about what they know about ARV and hormone therapies. Drs. Lynn E. Connolly and Lori Kohler, in a 2006 article for University of Washington's HIV Web Study, write that the metabolism of hormones differs from the metabolism of nucleoside and nucleotide reverse transcriptase inhibitors (NRTIs and NtRTIs).7,8 There have been no documented interactions between hormones and NRTIs/NtRTIs, according to Connolly and Kohler. It's a different story with non-nucleoside reverse transcriptase inhibitors (NNRTIs) and protease inhibitors (PIs). Those classes of HIV drugs mainly affect hormone levels in a patient's blood, while hormones usually have not been documented to alter ARV potency, with some exceptions. "Although numerous antiretroviral medications can alter estrogen levels," write Connolly and Kohler, "the effect of estrogen compounds on antiretroviral medication levels appears to be limited to a few antiretroviral medications, namely amprenavir (Agenerase) and the amprenavir prodrug fosamprenavir (Lexiva)." GlaxoKlineSmith prescribing information quoted by Connolly and Kohler showed a "significant decrease" in potency of amprenavir when co-administered with estrogen for a month in ten patients, "suggesting that this drug combination may lead to a loss of virologic control and possible amprenavir resistance." A number of NNTRIs and PIs can increase or decrease levels of hormones, which can cause problems if not properly monitored by a doctor a few times a year.
The sources of clinical information on the interaction between hormones and HIV medications are not studies involving trans people but women taking contraceptives simultaneous with HIV drugs. A February 2007 presentation by Drs. Barry Zevin and Linette Martinez asserts that there has actually never been such a study specifically of transgender people on both hormone therapy and ARV.9 Zevin and Martinez are affiliated with the Tom Waddell Clinic in San Francisco (under the city's Department of Health), which published "Protocols for Hormonal Reassignment of Gender" originally in 1998. They directly address concerns about interactions between testosterone and ARV taken by HIV positive transgender men, which obviously cannot draw parallels from research on contraceptives which contain estrogen.10 The Tom Waddell Clinic protocols highlight the particular importance of monitoring liver function, for both trans men and trans women. This is not a reason to deny hormone therapy but an incentive for working to keep transgender patients with HIV or infection with Hepatitis C in care, and feeling positive about themselves and their transition. Specifically referencing HIV, the protocols state "HIV is not a contra-indication or precaution for any of our protocols. While drug-drug interactions may occur we know of no specific dangerous interactions or likely causes of drug failure. Treatment with hormones is frequently an incentive for patients to address their HIV disease."
Darby Hickey is a national transgender and sex worker rights activist based in Washington, D.C. She has reported for $pread Magazine_, Pacifica Radio,_ Positively Aware_, and other media._
Centers for Disease Control and Prevention Morbidity and Mortality Weekly Report September 12, 2008/Vol. 57/No. 36 Subpopulation estimates from the HIV Incidence Surveillance System.
Hall HI, Song R, Rhodes P, et al., "Estimation of HIV incidence in the United States," Journal of the American Medical Association, 2008; 300:520-529.
Nemoto et al. 1999, Simon et al. 2000, Clements-Nolle et al. 2001, Kenagy and Bostwick 2001, Kenagy 2002, Risser and Shelton 2002, Nemoto et al. 2004a. As cited in Melendez RM and Pinto R, "'It's a really hard life': Love, gender and HIV risk among male-to-female transgender persons." Culture, Health and Sexuality, 2007; Vol. 9, No. 3, 233-245.
Clements-Nolle et al. 2001. As cited in Melendez RM and Pinto R, 2007.
Another term used by some people in referring to transgender women is MTF (male-to-female), and for transgender men is FTM (female-to-male). Many transgender people do no identify with these terms, while others do. There are many additional terms that trans people throughout the United States use to identify themselves, but that is beyond the scope of this article
Lombardi et al. 2002. As cited in Melendez RM and Pinto R, 2007.
Connolly, E. & Kohler, L. (2006) Transgender Women and HIV. HIV Web Study, Special Populations, Case 4. Available online at: http://depts.washington.edu/hivaids/spop/case4/index.html.
These four classes of drugs all work to inhibit HIV's effort to incorporate its genetic material into new cells, preventing cells from producing new viruses. The main differences between them are in exactly how they do this, depending on which aspect of cells and the virus they interact with.
Zevin, B. & Martinez , L. (2007) HIV infection and transgender medicine (slideshow presentation, 2-14-07). Available online at: http://hivinsite.ucsf.edu/InSite?page=cfphp-zevinmartinez-sl.
Tom Waddell Health Center. (1998) Protocols for Hormonal Reassignment of Gender.
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