July 27, 2011
The HIV/AIDS wave crested in the mid-nineties and the once underground disease had now become mainstream. Most Americans were talking about condoms and safer sex without embarrassment. Greg Louganis disclosed he had HIV/AIDS.
Ordinary people put together quilt patches, each the size of a coffin, forming the AIDS Memorial Quilt, which ultimately became the largest piece of art ever created. It was displayed in Washington in 1996 where its 40,000 panels covered the entire National Mall.
In the early nineties we, the positively charged, knew we were sailing a sinking ship. In all honesty we prepared to die and the media often referred to us as victims. I was labeled a "Casualty of War" in a San Jose Mercury News Magazine cover article because at the time survival really wasn't a viable option for HIVers.
Mass media, pop culture and we assumed that if science were to defeat HIV/AIDS, it would come too late for us. Our view of the future was the AIDS crisis would continue to gain momentum and notoriety. We felt confident the rapidly amplifying cry for cure, care and support services would become logarithmically louder and more persuasive. We imagined ignorance and stigma would be replaced by knowledge, reason and compassion. None of these things actually occurred.
In mid-1996 highly active anti-retroviral therapy (HAART) became available and dramatically decreased AIDS morbidity and mortality. This scientific breakthrough was a game-changer that changed not only the trajectory of the HIV/AIDS crisis, but also the perception of the illness. HIV/AIDS suddenly became "a chronic manageable condition." (I have blogged on this misnomer previously.) Mass media and pop culture enthusiastically spread the good news. Dr. David Ho, an AIDS researcher, was named Time Magazine's Man of the Year in 1997.
By 1998 AIDS deaths were cut in half.
Newsweek Magazine claimed we were "Taming the AIDS Virus."
Gay and HIV-positive characters in film and television were now applauded, not shunned, as demonstrated by Tom Hanks's Oscar win for his role in Philadelphia. Once ostracized by NBA players after he announced his HIV-positive status, Magic Johnson played in the NBA All-Stars game and the Olympics.
AIDS no longer appeared to be the threat it once was. The New York Times and Newsweek pondered the end of AIDS in cover stories.
The first large-scale AIDS vaccine trial was announced with considerable fanfare.
I was no longer depicted as a dying casualty of war in media releases.
By the end of 1997 it seemed as though everyone was jumping on the HAART bandwagon. We all believed that by taking the "cocktail" for several years we would be cured. HIV would be eradicated. However, in 1998 hopes that HIVers could avoid lifelong treatment with the potent and toxic antiretrovirals were shattered, as we learned that HIV could hide in cellular reservoirs for 60 years essentially untouched by the new wonder drugs.
In addition we began to notice unanticipated and bizarre side effects possibly related to the new second generation anti-HIV drugs.
Generally speaking we hoped and assumed second-generation products would be more effective and less toxic than their first generation counterparts. That's not always the case. Check out the cover of this issue of Time Magazine. There you will notice a second-generation product that was unquestionably more toxic than its first-generation counterpart.
Image 57: Time Magazine (Bush Dynasty)
Once pop culture trends peak they generally fade into obscurity relatively quickly -- avocado green shag carpets, Sony Walkmans, Chia Pets, disco music ... I'm sure you get my point. HIV/AIDS as a popular culture phenomenon appeared to have run its course by the late 1990s. With pharmaceutical cocktails more readily available and Magic Johnson looking fit and healthy it seemed that AIDS was no longer an imminent threat, let alone a clear and present danger. Americans quickly lapsed into complacency. Somehow HIV/AIDS had transitioned almost overnight back to an "us and them" issue. Reading media reports it seemed as if HIV/AIDS now only affected people in Africa. Gen-Y kids never knew a world without HIV/AIDS and seemed not to fear it. Gen-Xers considered it ancient history and had turned their attention to other concerns, such as global warming.
There was a short-lived media blitz in 2002 when an HIV-positive Muppet was introduced to the Sesame Street shows in Africa. Media reports gave the impression that Kami, the lovable furry HIV-positive Muppet, was proposed for the American version of the program.
Conservatives went wacko and Republican members of Congress threatened to withhold funds from PBS if the HIV-positive Muppet joined the American show. There was also a brief flurry of media in 2009 when Pope Benedict XVI reiterated the Vatican's opposition to condoms, claiming that using condoms actually increases the spread of HIV/AIDS.
Scientists, world health organizations and the LGBT community condemned the Pope's comments, but the general public really paid little attention to Kami's story of being banned in America or the Pope's outrageous comments.
It's interesting to note that when the mere threat of avian flu, SARS or radiation wafting across the Pacific Ocean from a damaged nuclear reactor in Japan can set off coast-to-coast panic and prompt the Federal Government to draw up contingency plans and stockpile medicines, Americans have become increasingly apathetic about an incurable disease that is transmitted by man's and woman's all-time favorite pastime! Sex! Today's over-1,100,000 HIV-infected Americans have become invisible. That every 9.5 minutes another American is infected or that half of all new infections in the U.S. are in young adults between the ages of 13 to 24 just doesn't seem to matter anymore. And the devastating consequences of the AIDS pandemic worldwide is no longer considered newsworthy. When was the last time you saw a magazine cover like this Newsweek cover from over a decade ago?
In 2008 the CDC released new HIV case estimates, showing the U.S. epidemic is worse than previously thought. The news media and most Americans hardly noticed the announcement.
What I've learned and wish to remind other generations is that cultural change is difficult. Africa is still poor; large parts of Asia are still in denial; and America is distracted by yet another war. The Internet has given us unprecedented real-time access to the world and has taught us to think globally; however, 10 million AIDS orphans wandering in the dust of sub-Saharan Africa move us to no more than a shake of the head and sigh. Headlines have moved on. Celebrities have taken up more glitzy causes.
According to data from the AIDS Drug Assistance Program (ADAP) Advocacy Association, as of July 2011 the number of HIVers on ADAP waiting lists had risen to 8,689. ADAP is a co-funded program (funded by federal and state governments) to provide anti-HIV drugs to low-income HIVers. Over the past two years 14 states have reduced the number and types of drugs ADAP will pay for in their state. States have also stiffened financial eligibility requirements, capped enrollment and actually removed some HIVers already enrolled. As we observe the 30th anniversary of the AIDS epidemic in America, the news media is again beginning to take note and shine a harsher light on the cruel realities resulting from these unconscionable decisions.
Despite these often sobering and somber recollections of the past 30 years I remain the world's foremost optimist. In 2010 President Obama unveiled the first ever national AIDS strategy. Even more recently there have been significant scientific breakthroughs in HIV prevention, including topical and oral pre-exposure prophylaxis and the extraordinary finding that antiretroviral therapy reduces HIV transmission among magnetic couples by 96 percent. This news alone should prompt an urgent reconsideration for fully funding ADAP.
Not only is it morally reprehensible to restrict or deny lifesaving antiretrovirals to HIVers, it has now been proven it's a monumental error of public health policy. In essence, failure to treat HIVers is fiscally irresponsible because treatment has now been scientifically linked to HIV prevention. China recently reported it slashed AIDS mortality by nearly two-thirds since it began distributing antiretroviral drugs in 2002. Approximately 63 percent of all those needing AIDS drugs are now receiving them in China, up from virtually zero in 2002.
Reviewing how HIV/AIDS has been reflected in the media and entertainment industry over the past three decades reveals how the virus affected our nation's psyche. The media and Hollywood first contributed to the panic, then later helped redefine AIDS as a public health crisis. However, HIV/AIDS seems all but forgotten among today's entertainers. Reality television and pop music seem to glorify the return of sex without consequences. When I hear Lady Gaga wail "I want your ugly, I want your disease, I want your everything, as long as it's free, I want your love," I tend to cringe and shudder a bit, even though I fully realize Gaga's "Bad Romance" was not referencing HIV/AIDS. From the bodacious jiggling bosom on Joanie, the bombshell secretary on Mad Men, to the chiseled abs and rock-hard pecs on the frequently shirtless vampires on HBO's True Blood, sex on television is back big time!
However, HIV awareness campaigns and prevention messages have not been correspondingly rejuvenated. They are either outdated or eclipsed by suggestive ads for Cialis warning only of a four-hour boner.
Yet despite these trends and the post-activism lapse into silence and complacency over recent years, the hopeful signs of renewed interest in addressing the reality of HIV/AIDS in today's society are once again increasing.
Not only did we have a revival of Larry Kramer's The Normal Heart on Broadway, but also a new musical, The Book of Mormon, nominated for 14 Tony awards and set in AIDS-ridden Uganda. Uganda, once praised by international health organizations for its rapid and progressive thinking in response to the staggering pandemic, now faces serious threats to this progress. The collapse of HIV awareness, prevention and treatment in Uganda stems from decreased financial commitment from the U.S. and other wealthy nations. Will the welcomed bubble of media attention surrounding this hit show help educate or remind us about AIDS in Uganda? I dearly hope so. Realistic HIV/AIDS story lines are also being woven into television (Brothers and Sisters) and movies (film versions of Angels in America and Rent).
Yes, the Band Still Plays On. AIDS continues to be a volatile, dynamic and incurable scourge, wreaking havoc on lives like mind and 33,300,000 others worldwide. Yet, I'm increasingly hopeful and confident we are finally listening to the music (recognizing the realities of HIV/AIDS in today's world) and that soon we'll all be moved to dance (to take action to end AIDS). And so dear BBBs, as I conclude this walk down memory lane, I ask you: are you ready to dance? The alternative is clear.
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