HIV shaped a generation like no other disease in human history. When it hit the United States in the late 1980s, the death toll skyrocketed into the tens of thousands. Activists banded together, tended to the sick, compiled, reviewed and promulgated reports from obliging scientists and protested relentlessly on Capitol Hill.
But times have changed, and so has the territory on which the battle against HIV was once fought: Currently, around 30 drugs exist that can subdue HIV to undetectable levels in the human body and significantly reduce the risk of infection. The Ryan White Care Act, the U.S.’ largest federally funded program for people living with HIV, helps provide care for low-income, uninsured individuals. Numerous clinics, social centers, HIV specialists and even HIV-poz dating services abound, making the U.S. a more poz-friendly environment.
However, despite these progressions, according to still-committed activists, social workers and leaders in the Philadelphia community, not only has the battlefield changed, but also those who are fighting the battles.
Now, the millennials (ages 18-30) will be the generation that decides how issues surrounding advocacy, treatment, testing and conversations about HIV are addressed and advanced. In addition, milliennials will have to survey the current state of the battlefield and understand themselves better, as 21st century living and the formation of opinions raise the potential for unwittingly fighting against their — and everyone who’s affected by HIV — better interests.
Advocacy
“We had a sitting president [Ronald Reagan] who never used the word ‘AIDS’,” says Ricky Paul, an ACT UP activist from 1990-98.
Much different from President Obama, who included increased funding for HIV-related research in his presidential campaign promises.
Starting in the late ’80s, advocating for the sick and dying due to HIV didn’t simply mean beating down Congress’ front door: It meant uniting activists, doctors and influential people while informing the public that HIV infects and kills indiscriminately.
“The only reason why we’ve gotten this far is because of an incredible amount of activism … inertia on the part of scientists … and because of people who were every bit as smart as the scientists, like stockbrokers and social workers leveraging their power,” says Jane Shull, executive director of Philadelphia FIGHT, an AIDS-service organization that provides primary care, consumer education, advocacy and research.
HIV was the perfect storm in that emergent issues such as homosexuality, disease control and sex blew up in the face of the public. But the size and the speed of the explosion made for a hard pill to swallow.
“There was a strong sense of medical triumphalism in the late ’80s,” said Shull, remembering the hyper-progress of medicine in the first decade.
“Scientists probably believed that they would be able to handle HIV as if it was on level with something like Legionnaires’ Disease.”
Also, being that homosexuals, who at the time were largely maligned, were among the first demographics to be affected by HIV, people felt more empowered than ever to pigeonhole them as moral and sexual deviants. And even though the 1960s and ’70s had ushered in greater sexual freedoms, many still considered anyone who engaged in premarital sex to be sexually deviant.
“Since HIV is a sexually transmitted disease, people didn’t want to bring it up with others who are going to get red in the face or embarrassed, simply because sex is involved,” says Kevin Burns, executive director of ActionsAIDS, a Philadelphia-based organization working in partnership with people living with or affected by HIV/AIDS.
Combine the arrogance of the medical community, the denigration of homosexuals and the sex taboo, and activists had a tripartite muting system they had to blare out with pure, gutturally wrought advocacy.
And their advocacy succeeded — better, in some ways, than they’d ever imagined. But what complicates advocacy efforts today is a marriage of battle weariness, extant ignorance and a pervasive illusion of victory.
“There’s a fatigue that long-term HIV survivors have,” said Burns: “They never thought they’d be here today, and because they’ve gotten their life back, they want to take their medication and move on with their lives.”
For many HIV-poz folk, the fight for a livable future is in the past. For many of them, regarding their own lives, the only difference now that needs to be made is extinguishing HIV’s stigma and securing access to medication.
Burns added that advocacy incentives wane in the face of current HIV-related advertisements: “Young people who see ads for HIV services and organizations with healthy-looking people quickly forget, or remain completely unaware, of the time when thousands of people were sick and dying from AIDS.”
One would think, however, that despite these aforementioned elements, HIV’s media presence in the burgeoning communication age would substitute for the lack of advocacy incentives. But as new medicine, organizations, services and fruitful research ramped up, as a side effect, these progressions normalized HIV prematurely, which colored the ballistics of older activism as obsolete.
But according to Shull, not all advocacy efforts dwindled away.
“I think there’s a lot of power still here. I just think it’s latent. And a lot of people who were activists now work for HIV-related organizations.”
So from behind the scenes, the work is being done, regardless of the threadbare front lines.
Aside from general awareness, the fight many activists currently engage in is one for increased access to medication, healthcare and housing, which presents issues on its own.
Access to treatment
Many veteran activists got involved in the fight against HIV because they were caretakerd for those with the virus. This activity shaped the primary objective of activists, which was to galvanize scientists to develop medications to combat the virus.
In the early tomid-’90s, scientists produced a medication line called AZT (Azidothymidine), which became the first-ever medication to slow the onset of HIV in the human immune system. But AZT meds came with a price.
HIV’s DNA is sloppy to its advantage, giving it the ability to quickly develop immunities to treatment. So the best AZT meds could offer at the time was to stifle the virus’ resistance temporarily. Also, the side effects of AZT meds included, but were not limited to, heavy fatigue, liver failure, changes in body fat distribution, sleep disruption, discoloration of fingernails and toenails and mood changes. Lastly, AZT meds cost recipients around $10,000 a year, making access to meds impossible unless one had ample capital.
Activist efforts, however, paid off substantially in 1996, when scientists released a new, more effective line of HIV drugs with significantly less side effects called protease inhibitors, which remain the base for multiple treatment regimens.
“Upon administering the protease inhibitors, people literally came back to life,” recalls Shull.
The death toll from the virus quickly eased, hospice-care organizations dynamically transformed into medication acquisition and distributions centers and, according to Paul, “the face of the disease changed, as well as popular opinion.”
But what did public opinion change? And what of the droves of poorer, if not homeless, HIV-poz folk who need housing and treatment they can’t afford? And, most of all, what are the consequences if these issues aren’t resolved?
“Currently, the major issue concerning the Philadelphia ACT UP chapter is the fight for housing and treatment for low-income and homeless HIV-poz people,” said Erica Goldberg, a current volunteer activist for ACT UP, a diverse group of individuals “united in anger and committed to direct action to end the AIDS crisis.”
While the Ryan White Care Act helps provides access and assistance to low-income individuals, the extent of its care varies from state to state, and the housing provisions it supplies remains comparatively inadequate to the demand.
“A lot of people in the public and legislature don’t realize that when HIV-poz folk don’t get health care and housing, not only does their chance of surviving decrease, but their chance of infecting others increases,” says Goldberg.
As a result of this ignorance, people have long been referring to AIDS as a “chronic illness,” believing it’s no longer a killer nor an issue in this country anymore.
“I still say that AIDS is becoming a ‘chronic illness,’” says Burns, “because not everybody has equal access to healthcare nor knows their status. Once those things happen, then AIDS will become a chronic illness.”
Burns’ statement touches on the reluctance toward testing, which HIV specialists and activists unanimously agree is one of — if not the — major obstacles between activist efforts and stopping the spread of HIV in its tracks. Testing
“Why don’t people get tested?” poses Shull. “They don’t know they’re at risk; they’re afraid of the stigma; they don’t know it’s a treatable disease, and they think they’re going to live forever.”
The reasons Shull posits for the reluctance to getting tested have remained stubbornly in effect since the first wave of deaths from HIV. Activists, however, have responded with their own philosophy when it comes to sexual encounters.
“You should assume everybody you sleep with is HIV-positive,” says Paul. “That’s what we said then and what we say now.”
But Paul also notes there’s a huge difference between intention and application.
“You might have somebody sit in front of you dead sober and say, ‘Well, of course I use condoms! But at 2 a.m., after they’ve been partying or drinking, they might not remember that, or even care to remember that.”
While testing positive for HIV is no longer a death sentence, HIV’s stigma, which connotes being lonely and unloved, even feared, deters those at risk from getting tested regularly.
Heterosexuals, especially millennials, rank in the top demographics of those who believe themselves to not to be risk. In addition, there are heterosexuals and homosexuals alike engaging in unsafe sex who simply don’t care what their status is.
“The world is getting smaller,” says Paul. “Because generations now have to work harder than generations before them, people are feeling the stress and, like in the ’60s, they’re tuning in, dropping out and just having unsafe sex.”
In addition to the infection rate of 50,000 new cases per year according to a recent CDC report, Burns said the infection rate in Philadelphia is five times the national rate, a staggering number considering that Pennsylvania — Philadelphia in particular — has some of the best advocacy efforts and care services in the nation.
When people know their status, it’s nearly a guarantee they’ll seek out further care, which, if they have access to medication, will lead to a happier, healthier life and significantly lower their chance of infecting others. But says Paul, with millennials “tuning in, dropping out, and just having unsafe sex,” it seems as though the root of testing reluctance lies in the need to amplify dialogue about HIV, which may prove to be the exact ingredient needed to resolve all the aforementioned issues.
Conversations about HIV
“How many people do you think could tell you the latest details about Amy Winehouse compared to the amount of people who know what’s up with the budget on Capitol Hill?” poses Shull, referencing out-of-vogue state conversations about HIV.
Even if HIV shaped a generation, its effects have stagnated before numerous portals of diversion in the present day. It’s easy for anyone to dither away hours every day playing on the Internet, texting or watching TV. And while one might think these portals could be used to rally efforts in the fight against HIV, their more popular uses dampen the potentially explosive effect still-committed activists could have on millennials.
“With the media no longer interested in HIV,” says Burns, “people tend to forget that it’s still a huge issue in this country — not to mention that 25 percent of the people who live in this country and are HIV positive don’t know their status.”
So in the face of these elements, what can be done? The answer, however simple, will require the same dedicated spirit of early activism.
“People in a crowd tend to follow a similar wavelength,” says Burns. “But if you get to them individually, you’ll find that their feelings vary greatly. I think that activists, HIV-poz folk and other informed people need to be having one-on-one conversations with their friends and family — and encourage them to keeping talking — if we’re going to get conversations about HIV back on people’s lips.”
Paul adds, “People need to figure out what safe sex means to them. And the sooner they do it, the better and more respectful their conversations will be in sexual encounters with HIV-positive folk.”
Thus, hope is on the horizon in the fight against HIV. The incentive in this fight won’t come from mass deaths, but from a sense of duty and necessity.
The front line in the fight against HIV, in a sense, is ubiquitous: Taking the time to educate oneself and talk to other people about HIV is just as needed as protesting at City Hall.