We continue to exclude women at our peril

Dr. Nastassia Rambarran is a Guyanese Public Health Consultant, Researcher and Physician living in Barbados. She holds a Medical Degree from the Univer-sity of Guyana and a Master’s in Public Health from the London School of Hygiene and Tropical Medicine. She is the Public Health Consultant at Guyana’s Society Against Sexual Orientation Discrimination (SASOD Guyana) and Site Physician providing PrEP at Equals in Barbados.

Yesterday, December 1st, marked World AIDS Day – a United Nations observance to raise global awareness around the progress and remaining work surrounding HIV. Women represent more than half of persons living with HIV in the world and young women (ages 10 to 24) are more than twice as likely to become infected than young men – UNAIDS states that every 4 minutes, 3 young women become infected with HIV. The reasons behind the disproportionate representation of women in the HIV epidemic are interrelated and harken back to gender inequalities in economic, socio-cultural and political spheres. To start, there are biological factors that make persons with vaginas versus persons with penises, more vulnerable to transmission of the virus. These include a larger surface area of mucous membranes that could be exposed to the virus, the mucous membranes being more delicate, and that semen carry more of the virus than vaginal fluids. This is then compounded by the non-biological factors. The UK-based charity Avert wrote about how poverty, and lack of access to basic human rights like education and health care lead the list of these factors. Research has shown that there is a direct link between education and HIV risk – girls who do not attend school are twice as likely to acquire HIV as girls who do attend school. Mere attendance, is however not sufficient, as many school curricula lack education on sex and sexuality, translating to students’ lack of knowledge on how to best prevent HIV transmission. In 29 countries women actually require the permission of a spouse or partner to be able to access sexual and reproductive health services. Young people over 15 years need a guardian’s consent in 79 countries to access similar services. Apart from these hurdles, girls and women still have to face healthcare providers who moralise around female sexuality and lack youth-friendly training, and transgender women can face outright discrimination and refusal of services when attempting access. Poverty by itself is an enveloping vulnerability, and women who are poor not only have decreased opportunities for education and health care, but are also placed in situations that increase risk, such as early marriage or transactional sex, and prevent access to effective treatment. 

The sixteen days of activism against gender-based violence is a global, annual campaign, which runs from November 25 to December 10, with World AIDS Day within it. The intersection of these observances is important because these intersections occur in reality. You’ve probably heard the disparaging statistic that 1 in 3 women worldwide experience physical or sexual violence. And there’s the even more horrific, recent finding that in Guyana this number rises to 1 in 2 women who have experienced violence. The ways in which violence impact on HIV transmission are numerous, and interconnect to form a web from which escape is difficult. The evidence shows that women who experience violence are more likely to acquire HIV. Reasons for this include being unable to negotiate safer sex; inability to access testing; greater risk of mental health issues as a result of the violence; possibly leading to misuse of alcohol and other substances, increased risky sexual practices and all further contributing to the risk of HIV infection. Violence doesn’t only act on the prevention side of the equation, but also affects the proper care and treatment of women living with HIV by affecting visits to treatment sites and the ability to properly take the medication necessary for treatment. Fear and violence can prevent women from even disclosing their HIV status, resulting in them being unable to make it into the programmes that would offer effective treatment. Transgender women encounter disproportionate rates of violence, from intimate partners, non-partners, and from institutional actors. They also have even more limited resources and avenues for recourse and assistance when suffering violence.

This October, the US Food and Drug Administration (FDA) approved a second drug as HIV pre-exposure prophylaxis (PrEP). This drug, which goes by the brand name Descovy, is an alternative for persons in whom kidney or bone issues might prevent the use of the other available PrEP medication – Truvada. It was welcome news but there was a catch. The drug company had only presented information on Descovy’s effectiveness and safety with men who have sex with men and a small number of transgender women, and as such, the drug could only be approved for use in those populations, and not in non-transgender women who have receptive vaginal sex. The drug company claimed that to enrol non-transgender women in the study would have taken too long and required too many resources. This “eye-pass,” as Guyanese say, is nothing new. Not only is there less data on PrEP with respect to women, but there’s less data on the effectiveness and safety of medications in general when it comes to women.

The entire history of medical science has been gendered. Author Gabrielle Jackson notes in her book ‘Pain and Prejudice’ how from the beginning of documented history, there has been a preponderance of men involved in, and the active exclusion of women from, medical science. This has resulted in the male body being seen as the default representation of a human body. Compounded by patriarchal ideals which prized female bodies only for their reproductive ability, little experimental research was done with women for fear of harming this reproductive ability. The patronizing and exclusion of women didn’t stop there however, but spilled into diagnosis and treatment of medical conditions. Women are thought to have a greater capacity for pain and suffering, so they are offered pain-killers less readily; their medical conditions, which can present differently from men, are misdiagnosed or under-diagnosed; and some conditions were thought to be merely in their heads for decades, and thus neglected in the research arena. Research on women’s health was woefully underrepresented for a long time, and still remains under-funded. Not only are women missing from studies on medications, but they have been missing from studies that form the basis for some of the widest recommendations on health, including whether aspirin can prevent heart attacks, and the effects of diet and exercise on heart disease. The rationalization of this exclusion was almost funny at times. As authors Leslie Laurence and Beth Weinhouse note in their book ‘Outrageous Practices,’ “It defies logic for researchers to acknowledge gender difference by claiming women’s hormones can affect study results – for instance, by affecting drug metabolism – but then to ignore these differences, study only men and extrapolate the results to women.” It slowly dawned on policy-makers that this was a problem and in the 1990s, the US developed policies to ensure women were included in clinical trials. So, things have improved, but the Descovy incident illustrates that we’re not where we should be yet. In fact, not all researchers bother to analyse their results by sex even though females might have been included, and it wasn’t until 2014 that it was recognised that researchers continued to use mostly male cells and male animals in pre-human studies.

In Guyana, the statistics indicate that women comprise just under half of the total persons living with HIV. Although no recent statistics could be found on how young girls in particular are managing with regards to infection, a 2014 survey showed that only 51% of young women aged 15 to 24 had knowledge about HIV prevention. Additionally, the prevalence of HIV in transgender women remains higher than the prevalence in the general population. Guyana has made significant strides in HIV prevention and treatment over the years – bringing down the overall infection rate, increasing the number of persons on treatment, and decreasing mother to child transmission. But gaps remain. As long as gender inequalities persist, as long as the extreme rates of gender-based violence remain, a reversal of all our gains is possible. The fight against the epidemic cannot be neatly concentrated in the biomedical realm whilst ignoring the insidious eroding effect of social influences like racism, misogyny, gender inequality, homophobia and transphobia. Attending to persons who are most at risk in the HIV epidemic is a sound public health strategy, but in doing so, we cannot afford to leave anyone behind and must at all times have an eye on having progress for every demographic, and with considerations for all intersections of risk. To exclude women from new prevention methods, to assume that they would automatically benefit from developments in treatment, and to ignore their daily realities is to court disaster.