The World Health Organization chose World AIDS 2016 to announce it’s finally recommending home HIV testing, so people can test for HIV in the privacy of home, at the point of sex.
This comes three decades after a company I founded submitted the world’s first application for such a test. FDA responded by refusing to review our application, despite clinical trial data which showed the test was safe and effective, and could help prevent the spread of HIV and get people into treatment. In a triumph of politics over science, countries around the world followed FDA’s lead and also banned home HIV testing, setting the stage for 70 million HIV infections, and over 35 million AIDS deaths worldwide.
It’s not just unnecessary death. At $34 billion, the AIDS budget accounts for an astounding 82 cents out of every $100 in the federal budget. That’s $5 billion more than the Justice Department budget — which funds the FBI, the Drug Enforcement Administration, the U.S. Marshalls Service, the Bureau of Alcohol, Tobacco, Firearms and Explosives, the Federal Bureau of Prisons, and a myriad of other agencies and programs. More than 61 percent goes for drug treatments and care.
There are 1.2 million Americans living with HIV (a quarter of whom are women), and roughly one in five are unaware of their infection; this lack of awareness helps contribute to an ever-increasing number of infections. Yet, at $900 million, prevention is the smallest part of the AIDS budget, less than a third of the $3 billion budget for cash and housing assistance for people with HIV and AIDS.
When AIDS first emerged in the U.S. in the early 1980s, nothing could have been more obvious than encouraging routine testing for HIV before having sex, to help thwart the spread of an incurable, sexually transmitted infection. As Larry Brilliant, who participated in the WHO’s smallpox eradication program observed, the key to containing an epidemic can be summarized simply, “early detection, early response.”
Yet, early efforts to test donated blood for HIV failed after vigorous political opposition — by blood banks focused on economic considerations, and by gay groups concerned about potential civil rights abuses. By the time blood banks finally began testing donated blood for HIV, close to half of all hemophiliacs had already become infected with HIV.
Political opposition to HIV testing became the incubator for AIDS to grow. In 1987, in his first speech on AIDS, President Reagan proposed routine HIV testing. He backed down after strong, unyielding opposition from AIDS activists and their supporters in Congress. That same year, even as research revealed a third of Americans who wanted to get tested for HIV preferred to get tested using a home HIV test, and 30 percent would only get tested using a home test, FDA responded to my company’s application for a home test by establishing a ban on even considering such a test.
A key reason was opposition from clinics which were already providing testing — and claimed people would commit suicide if they used a home test — and groups like Gay Men’s Health Crisis, which, until 1989, vehemently opposed all HIV testing, and staunchly opposed contact tracing, an accepted part of communicable disease prevention. AIDS activists were particularly strident in their opposition to home HIV testing.
The strength of political opposition to home testing caused FDA to wait until 2012 — and only after two lawsuits against it by my company — before finally lifting its ban and approving a rapid test for HIV which could be used in the privacy of home. At the time, a CDC and FDA study predicted a home test could reduce HIV infections by 8 percent annually. By catering to interest groups rather than focusing on science, the federal government helped a disease, which should have been relegated to the ash heap of history last century, take almost 700,000 American lives and more than a trillion dollars in expense.
Under current federal programs, there is no end in sight to more than 40,000 Americans becoming newly infected with HIV each year. For decades, even as AIDS infections have continued to spread, the U.S. government has failed to enact sound HIV prevention approaches. It’s time for a change.
Elliott Millenson is founder and CEO of Direct Access Diagnostics, which developed the first home HIV test and was later acquired by Johnson & Johnson. He is the author of “Perseverance,” a book about the fight for home HIV testing, coming out in 2017. Thinking of submitting an op-ed to the Washington Examiner? Be sure to read our guidelines on submissions.
