Thirty years ago, in June 1981, Michael Gottlieb, MD authored a brief report in the Morbidity and Mortality Weekly Report describing a rare form of pneumonia called Pneumocystis carinii in five young Los Angeles men. Within the month another report identified 54 young gay men with a rare cancer called Karposi’s sarcoma. Neither disease were known to affect young, previously healthy individuals. 30 years since the fight against HIV/AIDS continues and we must look back on the progress we’ve made, the lessons learned, and the challenges ahead.
In 1982, acquired immune deficiency syndrome (AIDS) was found to be the underlying cause of these illnesses reported the year before and Congress held it’s first hearings on the disease. By 1983, 3,000 AIDS cases were reported in the US and 1,000 people had died of the disease. That same year, Jay Levy, MD discovers HIV (human immunodeficiency virus; the virus that causes AIDS).
In 1985, the FDA licensed the first HIV test (interesting note that the Supreme Court just ruled on a case involving the intellectual property rights to a widely used HIV test). The year after, more than 38,000 cases of AIDS were reported from 85 countries. Not until 1987 (6 years after the reports) did the FDA approve of AZT for treating AIDS. And though efforts were starting to decrease the stigma of AIDS, the US added HIV as a “dangerous contagious disease” to its immigration exclusion list.
The first World AIDS Day was held on December 1, 1988 the same year San Francisco established what is now the largest needle exchange program (see my post about the importance of these programs and the Texas politics keeping the state from implementing them).
Ten years after the first report, in 1991, the RED ribbon was introduced as the international symbol of AIDS awareness. A group of 12 artists came together, inspired by the idea of yellow ribbons tied on treas to denote support for the US military fighting in the Gulf War, and came up with an idea to get people talking about an illness affecting more and more – to overcome the stigma associated with the disease and gain support to fight it. Photographer Allen Frame, one of the 12, said they picked red because “red was something bold and visible. It symbolized passion, a heart and love.”
By 1994, AIDS becomes the leading cause of death for all Americans between 25 and 44 years old. By 1996 though, the number of new AIDS cases in the US started to decline. Still in 2002, HIV was the leading cause of death worldwide among those aged 15 to 59. At that time, President George W. Bush announced the President’s Emergency Plan for AIDS Relief (PEPFAR), an initiative to address HIV/AIDS, tuberculosis and malaria. Others were also devoting more resources to address AIDS including the Global Fund to Fight AIDS, Tuberculosis and Malaria, the Bill & Melinda Gates Foundation, and the William J. Clinton Foundation.
Only in 2009 did the Obama administration lift the HIV travel and immigration ban. And Congress finally eliminated a ban on using federal funding for needle exchange programs.
In the past 30 years, AIDS has killed about 30 million people worldwide. Today, 34 million people live with HIV, though half of them do not know they have it, and 1.8 million will die this year from the disease. About 7,000 people are being infected with HIV each day. Though access to treatment has risen dramatically (22 fold increase since 2001), only 6.6 million people in low- and middle- income countries had access to treatment last year. Even in the US there are long waiting lists to provide treatment to individuals who need it. The United Nations had hoped by now we’d have achieved universal access to treatment.
Treatment has vastly improved in the last 30 years to the extent that the longevity of these patients presents new risks. Before antiretrovirals (ARTs) were available, most diagnosed with AIDS only lived weeks or months. Now with daily doses of ARTs, newly infected HIV patients may live at least 50 years. These medicines can reduce the risk of an infected mother passing the virus to her baby by 90%. But these medicines are expensive at about. And the treatment requires continued management by doctors much like a chronic disease (which means countries without any health care infrastructure may not have the ability to get the medications but also may not be able to administer the medications for optimal treatment). Experts believe that the price of these drugs will keep falling because of the huge demand. The prices have fallen substantially. The annual cost of antiretrovirals was over $10,000 per year in 2001 but not costs about $100 per year. Still this is just the medicine alone and $100 per year is a lot for people who make less than $1 a day. To get 15 million people on treatment by 2015 would take an estimated $6 billion a year.
There have been gains in prevention efforts too. A study of more than 8,000 men in Kenya and Uganda showed that circumcision can reduce transmission of the virus from their HIV-positive female partners by 56%. And women regularly using a gel containing tenofovir (an ART), reduced the women’s risk of contracting the virus by 54%. And then there is pre-exposure prophylaxis where uninfected people take ARVs to block new infections. Last year, a study showed that taking Truvada containing 2 ARVs could block infections by up to 70%. Another recent study showed that giving ARVs to an HIV positive member of a heterosexual couple could reduce transmission to the uninfected partner by 96%.
Even with these advances in treatment and prevention, many challenges remain ahead. Today, most HIV infections are among people under 30, a generation that grew up with HIV and know about the effective HIV treatments available. People still “underestimate their risk of infection or believe HIV is no longer a serious threat” says CDC chief Thomas Frieden. In South Africa, only 77% of men and 68% of women reported using a condom last time they had sex. In many other countries, only 30% reported using condoms.
Beyond condom use, education is needed about needle exchange programs, adult male circumcision, using ARVs to prevent transmission from mothers to their babies and from partner to partner. And methods to ensure more have access to these prevention measures need to be developed – especially to minority communities where HIV/AIDS is more prevalent. Counseling is also needed to ensure adherence to drug regimens.
Brazil has, interestingly enough, been a leader in the fight against HIV/AIDS winning the Bill & Melinda Gates Foundation award for the best model response in 2003. With aggressive national prevention campaigns focused on high-risk groups including women and gay men, HIV/AIDS cases dramatically declined. The nation’s constitution contains the right to health and as such the government has committed funds and provided ARVs to its citizens. The government has engaged in intensive bargaining negotiations with pharmaceutical companies to lower prices for drugs (something the US won’t even do for any Medicare prescriptions – which account for much of the costs of that program). Brazil threatened to produce and distribute its own generic versions of the patented ARVs if the pharmaceutical companies didn’t cooperate.
Perhaps there will be a cure, soon. We need cures for so many things – cancers, juvenile diabetes, multiple sclerosis, parkinsons, alzheimers, etc. Maybe we’ll find them and for that reason we cannot become complacent about the tools we already have to treat and prevent HIV/AIDS and must continue our research. But until then, we must work toward universal treatment and increased prevention efforts.
The UN Secretary General Ban Ki-moon implores us to unite in this fight “as never before” to reach a goal of “zero new infections, zero stigma, and zero AIDS-related deaths” within the decade. He focused in his speech to the General Assembly to revolutionize HIV prevention and mobilize young people as “agents of change” These are lofty and demanding goals, but not impossible considering the progress made. I grew up with HIV/AIDS, with movies like Philadelphia and public service announcements. I grew up in a time of incredible stigma around those who have HIV/AIDS and even more misunderstanding about the disease itself. I specifically remember programs that tried to dispel ideas that you could “catch” HIV/AIDS merely from shaking an infected person’s hand. We looked down for so long on one subset of our culture – gay men – initially calling the disease Gay-Related Immune Deficiency (GRID) and blamed them for this disease and shunned many when we didn’t understand the disease – even banning children with AIDS from school. Yet now we know, this disease can affect anyone, anywhere.
Perhaps our greatest accomplishment in these 30 years is how, according to Vincent Marconi,
HIV/AIDS has forced us to examine how we treat one another. It compel[led] us to question what we believe, who we love, and why we chose to ignore some of those around us while reaching out to help others.
It highlights our vulnerabilities but also provides us an opportunity to overcome systemic barriers and societal injustice.
It is in examining how we treat one another and working together to overcome barriers and injustice that we can continue to fight HIV/AIDS and many other diseases and conditions. Here’s hoping that our experience with HIV/AIDS will teach us not only about treatments, preventions, and cures but also about humanity and health as a human right.
June 27th is National HIV Testing Day.
A more in depth timeline can be found in this Medical Xpress article.
For more on HIV/AIDS visit:
- The UN Programme on HIV/AIDS (UNAIDS)\
- The CDC HIV/AIDS page
- The President’s Emergency Plan for AIDS Relief (PEPFAR)
- University of California San Francisco AIDS Research Institute
- The Global Fund to Fight AIDS, Tuberculosis and Malaria
- The American Foundation for AIDS Research (amfAR)
- Elisabeth Glaser Pediatric AIDS Foundation
- The World Health Organization