AGING WITH HIV text by Nicola Scevola
Stephen Helmke always wanted to be a physician but when he was in medical school in 1985 he discovered he was HIV positive and assumed he would never survive enough to finish his studies. He left the school in Louisiana and moved to New York. “When the antiretroviral therapy became widely available I was finally able to focus on my future again”, says Helmke, who’s now 49. “I wanted to go back to medical school but it was too late”. Today he works as sonographer at New York Presbyterian Hospital, conducting ultrasound examinations to help physicians specialized in geriatric cardiac diseases. In the US there are many HIV patients like Helmke who started following an antiretroviral therapy, reacted well to the treatment and are now conducting a fairly normal life. In fact half of the HIV/AIDS population in the United States will be 50 or older by 2015.
In the Nineties, a typical Act Up meeting in New York attracted a huge crowd of people aged 20 to 25. Nowadays participants are fewer and mostly over 45. But this pivotal development is bringing new challenges to the treatment and prevention of the disease. Today most physicians call HIV a chronic, manageable disease but few among them mention the problems that an aging HIV population is starting to show. Helmke, an ACT UP member himself, used to be able to take a pill-holyday every year for a month. Now he can only stop for a day before his condition starts to deteriorate. HIV finds hiding places in the body out of the drugs’ reach. Once medication is halted, these sleeper cells send out armies of new viral invaders to resume the war. So the current thinking is that the drug regimens are lifelong commitments. “Death used to be the biggest threat for HIV patients, today the biggest problem is accelerated aging”, says Helmke. “My system is worn down by polypharmacy”.
As long-term antiretroviral therapy escorts significant segments of the American HIV population into old age, there’s now the opportunity to focus on the late effects of the treatment. “At the height of the plague, gay men used to say: use a condom or die. Now they say: use a condom or take a pill”, says David France, author of How to Survive a Plague, an Academy Award nominated documentary. “But nobody exactly knows what are the side effects in the long run”.
The United States has been stable at about 50,000 new infections a year for the last decade but research shows that older people with HIV are more likely to develop cancer, liver and kidney disease, as well as depression. They are likely to suffer from an array of problems in the form of increased rates of bone loss and cardiovascular disease. And they also risk experiencing cognitive decline, which tend to be widely overlooked. A 2009 study known as Charter found that a little more than half of all people living with HIV experience some form of cognitive impairment. But not everybody empathize with these problems, even among scientists.
“There’s no doubt that some drugs have side effects and we still don’t know the long term potential headaches they can cause”, says Robert Gallo, director of the Institute of Human Virology and co-discoverer of the HIV virus. “But what I see is pretty much people being able to live a reasonably normal life. In other words, I see it as more of a victory right now than of a chronic low grade defeat”. It might seem a luxury to complain about the consequences of aging with HIV, when, for the first years of the plague, survival itself was at stake. Back then, life expectancy after a positive test was eighteen months. But for people living with the virus these complications represent major challenges.
The increasing cost for treating HIV infections in the US is also of great concern. The average amount spent on each patient is difficult to calculate. Estimates can vary greatly, depending on severity of illness. But, as a study published in the AIDS Journal points out, “the annual per-person costs of care for HIV-infected patients in the United States are high (and) given the potential increases in costs of therapeutic agents, toxicities due to ARVs and aging-related comorbidities, it is likely that the aggregate costs of HIV care will continue to increase for the foreseeable future.” This is bad news for an already cashstrapped health system because it means that, at some point, even an epidemic that remains stable becomes too expensive to afford.
SILENCE = DEATH ACT UP, fight back, fight AIDS!
The AIDS Coalition to Unleash Power (ACT UP) was founded in March 1987 as an organization devoted to direct action – demonstrations and civil disobedience – to call the attention of government officials, scientists, drug companies and the general public to the severity of the AIDS crisis and its impact on the lives of individuals. It was after playwright and author Larry Kramer’s well-attended speech at the Lesbian and Gay Community Center in New York City, focused on action to fight AIDS and the Gay Men's Health Crisis (GMHC) political impotence, that some 300 people met to form ACT UP.
On March 24, 1987, 250 ACT UP members held a demonstration in Wall Street to demand greater access to experimental AIDS drugs and for a coordinated national policy to fight the disease. Seventeen ACT UP members were arrested. A year later, celebrating the first anniversary of the first ACT UP demonstration, the coalition returned to Wall Street but this time more than one hundred activists were arrested. From then on, during the late 1980s and early 1990s, ACT UP New York staged many successful theatrical-innature actions, which captured media attention and brought focus to its messages. Ultimately, ACT UP forced the government to shorten the drug testing and approval process; increase funding for AIDS research, care, and education and promoted legislation to protect the right of HIV+ individuals.
Organized as a leaderless and effectively anarchist network, much of ACT UP's work from 1987 to 1995 was done in committees and working groups devoted to particular topics. The Coalition never registered as a not for profit because it didn’t want anything to do with the government. This kind of uncompromising ethos characterized the group in its early stages but eventually led to a split between those who wanted to remain wholly independent and those who saw opportunities by becoming part of the institutions and systems they were fighting against. Housing Works, New York's largest AIDS service organization, the Treatment Action Group and Health GAP, which fights to expand treatment for people with AIDS throughout the world, are direct outgrowths of ACT UP.
In recent years, with the changing nature and perception of the AIDS crisis, ACT UP's membership has dwindled, even though the 30th anniversary of the epidemic has definitely revived the traditional Coalition’s Monday meetings and brought along a resurgence of AIDS activism. An always increasing number of ACT UP’s first timers, today in their 50s and 60s, are now back on the scene to face, in a country where the transmission rate hasn’t declined but that has managed to turn AIDS into a chronic disease, the new great challenge of aging with HIV.
INFOGRAPHICS USA - Aging
The infographics are presented for informational purposes only. Every attempt has been made to ensure that the information contained herein is accurate. Figures and percentages are based on latest available data as collected by the World Health Organization (WHO) and the Joint United Nations Programme on HIV/AIDS (UNAIDS) and published on their respective websites.
THUMBNAILS AND CAPTIONS