Last week, Durban (South Africa) was filled with science, activism and policy dialogues around HIV, as expected – after all it was the 21st International AIDS Conference. The focus of this edition, “Access, Equity and Rights” was more than apt. According to Charlize Theron, we live in a world that has all the tools it needs for preventing HIV transmission, yet millions in low and middle income countries are still becoming infected, key populations are still marginalized and unable to access the services they need for both prevention and treatment! Like all big conferences, there was a lot to see, hear and learn. There was hope and there was frustration as scientists described progress made towards finding a cure for HIV and how those “sneaky reservoirs” are the only mighty things standing between us and the cure we so desperately need.
The youth bulge is real in Africa and adolescents are the only age group that have not demonstrated decreased death rates from HIV. Men are not doing as well as women on the 90-90-90 targets, we are not retaining women enough in the HIV cascade especially in the context of Prevention of Mother to Child Transmission (PMTCT), and we are not starting HIV positive children on treatment early enough. Stigma is still a big deal and HIV self-testing at scale is coming soon
Key populations, including commercial sex workers, trans-gender people, people who inject drugs also got their time in the spotlight, from sessions describing a disproportionately high burden of infection and lack of access to care among this population, to protests demanding decriminalization of sex work, after all, according to the network of sex workers, “sex work is work”. In a session aptly titled ” Mind over matter: providing high quality respectful HIV services to key Populations”, EV Chris Akolo and colleagues from the Linkages project of FHI 360 discussed the top 10 standards of clinical care for key populations. The need for coordinated service delivery with effective referral mechanism at HIV clinics became very clear, as HIV prevention and treatment services are only 2 out of the top 10.
This was not the conference where people living with HIV allowed other people to speak for them, no, we heard what they want in their own voices. We heard HIV positive adolescents and young adults say “they didn’t want to be lectured or preached at, but listened to and understood.” They want integrated services with a strong sexual and reproductive component, and the “body changes due to the side effects of the ARVs bothered them”. We heard members of key populations say that HIV treatment is not always their priority health problem, sometimes it is violence and attendant mental health issues, and sometimes it is hormonal therapy and its interactions with the ARVs they are taking.
There were many “how to” lessons: how to bring more men into the HIV care cascade starting from testing – think about providing services in the evenings when they are not at work, how to ensure more people accept HIV testing – think about screening for other priority diseases at the same time. There were recurring decimals – adapted to patient preferences, respectful, dignified, high quality care. Differentiated care, a strategy aimed at maximizing the benefits of treatment for patients and the health care system, was particularly popular. These elements sound like patient centered care, care that is “is respectful of and responsive to individual patient preferences, needs, and values”. While it’s difficult to argue against providing this type of care, the prerequisites can seem out of reach for rural clinics in Nigeria or Kenya, and you might even be tempted to wonder if the patients will appreciate it.
So, next time someone tells you that patient centered care is only for high income countries with sophisticated equipment and health records, tell them that’s what people Living With HIV (PLHIVs) everywhere want and that’s what we should be building.