Despite our best efforts, we all stereotype. Picture someone with HIV, for example. The chances are the image that comes to mind is that of a white man in his 20s or 30s. Why is that? Possibly because so many HIV prevention strategies focus on men who have sex with men. Perhaps because Queen’s Freddie Mercury, Erasure’s Andy Bell and the actor Charlie Sheen are among the most famous faces associated with the disease.
Is the reason so much attention is placed on men who already have the condition, or are considered at high risk of contracting it, is because women are just a tiny fraction of the patient population? This can’t be the case because, in fact, women make up one third of all those living with HIV.
As ‘Invisible no longer’, a report launched recently by the HIV charities Terrence Higgins Trust and Sophia Forum, says: “Gender equity in the response to HIV is essential but we are currently far from achieving it. Equal attention to women’s needs and experiences in HIV prevention, services, care and support is long overdue.”
The report, which has been a year in the making, suggests ways to fill the gaps that exist in knowledge and in meeting the needs of women with, or at risk of, HIV. No ‘one size fits all’ solution is described, precisely because the report highlights the huge diversity that exists within a patient population that, in 2016, numbered more than 28,000 (see panel).
Part of the issue, according to the report, is the fact that priorities in HIV services have historically been shaped by transmission routes, which “makes invisible the breadth and diversity of women and women’s experiences”. Our findings demonstrate significant unmet need, the report says.
This extends across both prevention and support services, with women with HIV who contributed to the project highlighting that their condition meant they frequently required support for wider health and social concerns – yet being HIV-positive made it harder to access help for problems unrelated to the infection.
Alarmingly, nearly half of women responding to the report’s survey were living below the poverty line, with nearly a fifth saying they never or rarely had enough money to cover their basic needs, and even those who felt they could said they had financial worries related to their condition.
Many felt their HIV status was a barrier to obtaining and maintaining employment. Nearly a third said they had nobody to turn to for support immediately after receiving their diagnosis. Over 40 per cent felt they had been diagnosed later than they should have been and all reported that finding out they had HIV had had a negative impact.
Of particular concern is the sense that some issues, while recognised globally, are not being addressed well in the UK. A prime example is the established link between HIV, gender and violence: over half of the women surveyed reported experiencing abuse or violence as a result of their HIV status, many in healthcare settings. Only a minority had been able to access the help they needed.
When it comes to HIV there are some areas in which pharmacy could make a difference. One is testing. A survey about prevention found that while many women were open to taking an HIV test, many had encountered barriers such as difficulties accessing sexual health clinics, either due to distance or opening hours. Importantly, they were open to testing in community settings.
Meanwhile, over half of those who had taken a test had not been offered information on sexual health and HIV prevention at their appointment – again, an area in which pharmacy could build on its experience in the provision of such advice alongside services like EHC provision and STI testing.
“As women living with HIV, we know what we want,” say Florence Obadeyi and Jane Shepherd, peer researchers on the ‘Invisible no longer’ project. “We always have. For decades we have been a collective voice in the HIV response – advocating for services and mobilising for change; pushing and pulling to get women’s needs and priorities acted upon. But the results are disappointing and the minute our backs are turned or we pause to rest, we slide off the agenda.”
Hopefully this report will galvanize a shift in attitude. NHS commissioners could do worse than look to pharmacy. After all, pharmacists and their teams are well-versed in recognising customers as individuals and personalising the care they provide. They could make a really positive impact on women and HIV.
Current approaches are not enough to control the HIV pandemic, according to a new Lancet Commission, led by the International AIDS Society. While new infections are declining, this is not enough to reach the UNAIDS target of 500,000 new infections by 2020.
The commission warns that a resurgence of the epidemic is likely as the largest generation of young people move into adolescence and adulthood.
At the same time, care for HIV is also changing as the population of people with HIV is steadily growing older due to the effectiveness of antiretroviral therapy. As this group has an increased risk of many age-related diseases (such as cardiovascular disease, neurocognitive disorders, renal disease and some cancers), a focus on prevention and management of non-communicable diseases for people with HIV is needed, creating a crossover with global health and wider health services.
Governments, HIV specialists and the broader global health field must work together to improve the HIV response, says lead commissioner Dr Linda-Gail Bekker, president of the International AIDS Society. “Despite the remarkable progress of the HIV response, the situation has stagnated in the past decade.”