Breakthrough Patient Recruitment

: The Underrepresentation of the LGBT Community in Health Care and Clinical Trials

The Underrepresentation of the LGBT Community in Health Care and Clinical Trials

Recruitment Specialist

For any of you devout Healthyist readers, you may have noticed that my blog posts come from a place of annoyance over my current social media news feeds, and one this is no different. Today, I am talking about a solid 75 percent of recent posts: Caitlyn Jenner. Why am I annoyed by this? Well, first, it is taking up the majority of my news feed, which is usually reserved for cute pictures of animals. However, and more importantly, it is showcasing how clearly misunderstood and underrepresented the LGBT population is across different cultural facets. Sadly, the health care industry is no exception.

The first problem encountered when looking into the representation of LGBT persons in health care, particularly in relation to clinical trials, is that there is just not enough data. People in or around urban areas are more likely to self-identify as lesbian, gay, bisexual, or transgender; however, a significant portion of the overall population is unwilling to accept a label of this nature. Government surveys, barring one- just one-in Massachusetts, do not include references to gender identity, and hardly any medical research is conducted specifically in regard to LGBT issues (specifically 0.1 percent of all articles in the National Library of Medicine).

At the same time, self-identified gays have been excluded from some clinical trials, the problem with which, as said by Professor Susan Cochran of the University of California, is that "if everyone just decides they're going to exclude sexual minorities, then their health issues are never dealt with." This is particularly true in reference to studies concerning sexual health, where the majority of this participation prohibition occurs, but exclusionary language is present in the requisite criteria for other medical indications in completely different areas, such as ADHD.

However, members of the LGBT community were more than twice as likely as their heterosexual counterparts to have participated in a cancer-related clinical trial where sexual orientation was not a factor accounted for in the screening process or in any way documented. Although the evidence is not substantial enough to draw any real conclusions on why this is, there have been studies that suggest that lesbians were less likely to screen for cervical cancer (among related forms) at the recommended intervals and therefore may have further progressed forms of the disease at diagnosis, which is a key factor in the decision to enroll in oncology studies. A likely fault in this is that lesbians and bisexual women are less likely to be insured, as well as a misconception that lesbians are at a lower risk of diseases such as HPV. This is true of the entire LGBT community, with one in three respondents to a survey conducted by the Center for American Progress being uninsured. Furthermore, of those who are insured, many do not have necessary preventative coverage, and this especially for transgender individuals.

Clinical trial participation can fill in a significant portion of coverage gaps for this underinsured population. There are several mental health conditions that disproportionately affect the LGBT population due to faced discrimination and forced marginalized lives, including substance abuse, depression, anxiety, and body image disorders. There is also an elevated risk for other health issues, such as cardiovascular disease in homosexual women (stemming from increased obesity rates) and HIV infection in homosexual males.

In 1993, Congress passed the National Institutes of Health (NIH) Revitalization Act, which required the inclusion of women and minority groups in clinical trials. The necessity behind this mandate was not only to ensure all people had access to the same resources but also because different people have different reactions to the same treatment. In 1994, Congress established the Office of Women's Health (OWH) branch of the FDA, which incorporated data analysis in clinical trials to identify the differences in efficacy between the sexes in disease therapy for this same reason. In recent years, you may have seen a result of this in the amended dosages of drugs containing zolpidem (marketed most often as Ambien), wherein the recommended amount for females was cut in half.

Minority groups often face underrepresentation in medical research, as we discussed last year in a 4-part series focusing on the barriers facing ethnic and racial populations, as do women. The LGBT community as sexual minorities should be similarly supported with focused efforts to ensure inclusion in clinical research. Neither of the aforementioned pieces of legislation mention gender identity, but it has been more than 20 years since these laws were passed. It is time for a reform. It is time for all demographics to be represented.

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