Source: forbes.com
A new study has found that strategically distributed HIV self tests have the potential to not just boost HIV screening rates, but encourage users to seek out treatment and recommend the method to peers also at risk.
Rewind to the mid 1980s, when HIV infections in the United States were at their peak and researchers were first looking into the development of rapid self tests, and such promising results will be impossible to find. The narrative constructed by public health officials around HIV self tests and home testing kits was the opposite of hopeful—alleging instead that do it yourself diagnostics would spread the disease, not prevent it.
That logic derived less from actual scientific evidence than it did from a highly paternalistic attitude towards disease management, not to mention the social stigma around HIV/AIDS that, for so long, kept those in dire need of screening and treatment from accessing either. The history of HIV self tests, from their ill fated conception up to contemporary products and policies, raises a broader question: what happens when regulatory agencies use unproven assumptions to determine whether a medical product is safe and effective?
As the former chief executive officer of Cambridge Biotech, one of the companies that unsuccessfully attempted to obtain approval from the Food and Drug Administration for an early AIDS self test, it is a question I know too well.
In the mid 1980s, Cambridge Biotech created a groundbreaking HIV diagnostic test that was used by the Centers for Disease Control and Prevention and healthcare providers at large. Around the same time, we were developing on a five minute AIDS self test intended for personal use. Like the anonymous testing services for sexually transmitted diseases that the British government had, by then, extended to HIV, at home tests were discreet, expedient, and thought to protect users from the fear and discrimination they might encounter in traditional clinical spaces.
The Food and Drug Administration and the Centers for Disease Control and Prevention had other ideas. Both health agencies argued that self screenings, rather than reaching at risk, undiagnosed populations and possibly giving them cause to follow up with treatment, would give users who tested positive the option to conceal their status and proceed as usual. Their error in judgement became grounds for regressive public health policies that all but banned further research on self testing and consequently delayed diagnosis—sometimes fatally—for far too many.
Research as a recent as the aforementioned study, published in November 2019, proves that the stance taken by federal agencies on HIV self testing back then does not hold up today. Neither does the notion that clinical settings should be the center of all diagnosis, treatment, and prevention efforts. Slowly but surely, the mentality of healthcare providers is shifting to place more emphasis on the agency and preferences of individual people. Accommodating options like HIV self tests can do the same for their approach to HIV/AIDS management, domestically and abroad.
Realizing the Full Potential of HIV Self Tests
Of the 1.15 million people living with HIV in the United States, an estimated 18 percent are undiagnosed. While the Food and Drug Administration approved the saliva based OraQuick In Home HIV Test for public consumption back in 2012, it remains the only rapid, over the counter HIV self test on the market. This might have something to do with the fact that the agency did not even begin to reconsider its moratorium on self screening until 2005.
As more studies are conducted on the potential public health impact of HIV self testing, more opportunities will arise to improve existing methods and incorporate them into national and global strategies for treating and preventing HIV/AIDS. The World Health Organization predicts that around the world, 8.1 million people are unaware they are HIV positive. Since 2015, the Unitaid Self-Testing Africa (STAR) Initiative has been innovating HIV self test distribution models that target at risk and hard to reach populations in Africa, where HIV/AIDS has hit hardest.
To date, the STAR Initiative has delivered millions of HIV self test kits through clinic, workplace and community based channels, with plans to reach their goal of five million by mid 2020. Beyond affordability and convenience, HIV self screening affords its users a certain degree of autonomy—a small, but by no means insignificant, measure of control in face of a disease that has traumatized entire countries. People want to take charge of their own health, and their own lives. It is high time our health policies and systems let them.