By Dawn Wolfe Gutterman
It has killed 25 million people worldwide, including 500,000 in the United States. It has spawned fears and observance days, conferences, protests, a mention in millions of books and, eventually, it eventually helped to galvanize the LGBT civil rights movement.
On Monday, June 5, AIDS turns 25.
"Clearly, AIDS is the health issue of our time, with both social/cultural and economic implications," said Phill Wilson, executive director of the Black AIDS Institute.
HIV/AIDS has certainly had a huge impact on the lives of people here in Michigan who are working to prevent the disease and help the estimated 16,200 state residents who are now living with HIV/AIDS.
Jake Distel, the executive director of the Lansing Area AIDS Network, told BTL, "I recently counted having lost over 50 close friends or acquaintances to AIDS," including his partner Jon, who was diagnosed in 1988 and died in 1996.
"The personal impact of this work has been tremendous. The loss of many dear friends and colleagues spans almost 20 years for me as it does for so many others," said Jimena Loveluck, executive director of Ypsilanti's HIV/AIDS Resource Center.
Craig Covey, executive director of the Midwest AIDS Prevention Project, said of the disease, "HIV/AIDS changed my entire career. Instead of staying in gay rights work and eventually entering politics, I took a 20 year detour to fight the HIV battles. I never planned a career in public health or wanted to run health organizations."
Barbara Murray, the executive director of AIDS Partnership Michigan, said, "I had brown hair when I started this job; it's almost white now."
The fact that, in its early years, an AIDS diagnosis was an almost certain death sentence isn't the only reason the disease has stirred huge passions. Another is the politics of AIDS. Though discovery of the disease was first announced in 1981, it wasn't until 1986 that President Ronald Reagan first mentioned AIDS in public. After all, at first AIDS was seen, at least to the mainstream public eye, as "gay cancer." In a 1985 survey, according to Public Agenda, a non-partisan research organization, "more than half of Americans said they believed the government would spend more money on AIDS research if it didn't primarily affect gay men."
That total disregard of the gay community helped galvanize it, according to Sean Kosofsky, policy director for the Triangle Foundation.
"First and foremost, the HIV/AIDS pandemic was one of the first things to dramatically force our community out of the closet in the 80s," Kosofsky said. "That has propelled our community forward immensely, despite the disease that has ravaged our community. The vehicle by which many came out, the vehicle by which many people got involved in our community politically was HIV and AIDS, and I would dare to say that there is no other minority group in this country that is as adept at rallying around those stricken by disease to create our own resources and support networks."
"I think in some ways, because of the devastation to our community, it forced the general public to start talking about gay and lesbian people; they started seeing gay and lesbian people in the national media who were impacted by this disease, and it was an important educational tool for people to understand why LGBT people should be afforded civil rights. I think that accounts for some of the progress that's been made in the area of civil rights," said Jay Kaplan, staff attorney for the ACLU of Michigan's LGBT Project.
Perhaps because of the work of early advocacy organizations like ACT-UP, which helped make the face of AIDS more visible, support for LGBT equality and support for AIDS funding alike have increased.
According to Public Agenda, "About half of Americans now say in surveys that homosexuality should be considered an acceptable alternative lifestyle, compared to only one in three people 20 years ago." And according to a press release from the Kaiser Family Foundation about a recent survey on public attitudes about the disease, "Nearly two thirds of all Americans (63 percent) say that the U.S. government is spending too little at home to fight HIV/AIDS – up from 52 percent in 2004."
'Abstinence until what?'
Unfortunately, while the first Republican President with an opportunity to fight AIDS ignored it, the current Republican President not only isn't doing enough, according to some HIV/AIDS experts he is squandering public money on right-wing "faith based" programs that aren't helping at all.
"What's aggravating now is seeing how this current administration is defunding prevention in favor of abstinence. Abstinence until what?" said Mike Neubecker, Great Lakes regional director of Parents, Families and Friends of Lesbians and Gays. Neubecker lost his brother-in-law to AIDS.
"It's like, if young gay people hear this message, they know that according to this administration they can't have any sex until they're married, but they can't get married," Neubecker said. "They (the Bush administration) just don't get it."
"After 25 years it's still disappointing that faith-based organizations are getting our funding, but they're not tapping the people that have been on the front lines battling this disease," said Johnnie Jenkins, co-founder and director of the Detroit Black Pride Society. Jenkins is also a former board member of Men of Color, formerly the largest black HIV/AIDS assistance organization in Detroit. "They're getting more of the HIV funding, but as far as I know they haven't reached out to the people from my community – not just the black gay community but the gay community – for their experience from being on the front lines for the past 25 years. It makes you wonder, what are they (the religious organizations) doing with it and who are they servicing?"
"Mindsets and misinformation driven and perpetuated by theocrats and the current administration have much-needed funding heading towards (and many would argue wasted on) intervention models and belief constructs such as abstinence and 'just say no' mentalities," said LAAN's Distel.
HIV/AIDS in the U.S.
According to a report by the Open Society Institute, a grantmaking institution founded by George Soros, "The United States of America, a leader in the international response to AIDS, is failing its own citizens in the response to the epidemic at home."
Despite commitments made by the United States to the United Nations' General Assembly on HIV/AIDS in 2001, the report says that in the United States, "There has never been a national plan that comprehensively addresses HIV prevention, treatment and other related needs within the country's borders – and there is no comprehensive strategic plan to address AIDS today…. Chronic rates of HIV incidence and inadequate care access reveal a shocking level of systems failure."
While the report says that the current state of HIV/AIDS in the U.S. "is not the fault of any one president or Congress, but an ongoing and shared responsibility," it also cites the Bush administration's lack of response as part of the problem. According to the report, "new limitations on Medicaid and flat funding for many federal AIDS programs reflect a federal response that in some ways is becoming even less responsive to demonstrable needs. A new Presidential AIDS Initiative would provide additional resources for prevention, but regrettably focuses on rapid testing to the exclusion of other interventions." The Centers for Disease Control recently released new guidelines that recommend that HIV/AIDS testing be conducted as part of all patients' routine medical examinations.
In addition to failing gay men by providing inadequate funding, and misusing much of the available funding for HIV prevention and treatment, the Bush administration is also failing another population: African-Americans.
"What started out as a strange disease among six white, gay men 25 years ago is no longer a gay disease, a white disease nor predominantly a gay disease," said Wilson. "AIDS in America today is a black disease. No matter how you look at it, black people bear the brunt of the AIDS epidemic in America today."
"Today, African-Americans represent nearly 50 percent of the half-million Americans living with AIDS, 54 percent of the new HIV/AIDS cases in America are black, and nearly 70 percent of the new HIV/AIDS cases in America are among black women," Wilson said. "The AIDS epidemic is clearly not over for any of us, but particularly it's not over in black America."
According to the Open Society report, "The epidemic among African-Americans is the clearest example of the harsh disparities that characterize AIDS in the United States. No significant progress can be made on national-level outcomes unless policy and programming better meet the needs of this community."
"The country has failed to come to grips with an interwoven set of social factors – including economic inequality, racial and gender disparities, racial discrimination, and homophobia – that create vulnerabilities to HIV infection and lead to poorer outcomes from health care services," the report says.
"The conservatives running our government slash funding for effective prevention, bowing to the religious fundamentalists who keep pushing abstinence as the only answer," Covey said.
An international crisis
And while the United States is, as the Open Society report says, "a leader in the international response to AIDS," that response has often been as mixed as the response to the epidemic at home. In addition to shifting funding to "faith based" organizations that stress abstinence rather than condom use overseas, the administration recently lost a federal court case over its policy that organizations receiving funding sign a pledge to oppose commercial sex work. According to the Global AIDS Alliance, under the policy, "organizations that provide such services are essentially forced to choose between accepting U.S. funding and adopting a policy that alienates and stigmatizes many high-risk communities. According to the American Civil Liberties Union, which also signed the amicus brief [in the case against the U.S. government], the current U.S. policy is so extreme that NGOs are forbidden from engaging in any speech or activity that could be perceived as insufficiently opposed to prostitution."
According to a December 2005 report by the Joint United Nations Programme on HIV/AIDS, approximately 40.3 million people worldwide are now infected with the virus, including 25.8 million in Sub-Saharan Africa, 1.8 million in Latin America and 7.4 million in South and South-East Asia. The report says that, in 2005, "Close to five million people were newly infected with the virus." Over three million people died in 2005, according to the report, over half a million of whom were children.
According to Covey, "Millions will die across Asia and Africa because they can't get condoms, which cost pennies to make."
The good news
Michigan's leaders in the fight against AIDS did cite progress in the battle, however.
Preventing the transmission of the disease from mother to child during birth and the development of new drugs were cited as key "wins" by Michigan AIDS service providers who spoke with BTL.
In addition, "There are minor wins," said Murray. "When this (the epidemic) started I don't think you could walk into a drug store and look at a display rack of condoms. I think that they were still behind the counter. That's a big cultural change. We've [also] had some pretty solid success with needle exchange in spite of the government's unwillingness to fund it."
"The good news is that I don't have to go to as many funerals as I used to attend in the 1990s. Medical advances have greatly lowered the American death rate from HIV disease," Covey said.
"Without the involvement of People Living With HIV/AIDS at every level of program development and implementation we would not be where we are now," Loveluck said.
The next step
Several leaders, including those working in HIV/AIDS, agreed that more needs to be done.
"The first thing to do is for black institutions, key opinion leaders and cultural icons to take ownership of the disease," said Wilson. "We have to break down the denial, the shame and the stigma and realize that AIDS is our problem. The second thing is our society as a whole needs to commit to developing the infrastructure and the capacity in black communities to fight the epidemic."
Other issues cited by HIV/AIDS leaders were the need to fully fund the AIDS Drug Assistance Program and the Ryan White CARE Act. Currently there are concerns that, rather than increasing funding for the CARE Act, Congress may shift funds from organizations that are currently receiving them to Southern states where HIV/AIDS services for African-Americans have been traditionally under-funded.
"I see the increased need year after year, yet we see increasing administrative burdens by our federal funders accompanied by decreasing resources for both care and prevention," said Debra Szwejda, Manager of the HIV/AIDS Prevention & Intervention Section in the Michigan Department of Community Health. "There is a lack of awareness in general about where this epidemic is and where it's going. We continue to fight the apathy and raise awareness. This disease has not gone away!"
"I think one of the key things that we need to do here is help our leadership, all leaders – congressmen and senators and state legislators and church leaders – we have to convince all these leaders that you need to set aside all the moral and religious judgments about this disease and the people who have it. This is a health care problem – deal with it," said Murray.
"HIV/AIDS is a global epidemic that requires a global solution, and the United States has a responsibility to lead the world in addressing this horrible disease," U.S. Senator Carl Levin (D-Michigan) said. "There are no easy solutions to the problems associated with this epidemic, but we must continue to support funding for AIDS prevention and awareness. Researchers are working hard to find additional treatments, and ultimately a cure, for this devastating disease."
Contact your Congressperson
In the United States, the federal government provides the bulk of government money to organizations that are working to prevent HIV/AIDS and help people who are infected by the disease live with it. The Ryan White CARE Act and the AIDS Drug Assistance Program are currently up for renewal, and your voice could be the one that makes the difference.
Contact your U.S. Senators and Representative and tell them:
I support full funding for the Ryan White CARE Act. Don't just shift funds from programs that are under-funded now to others that aren't receiving funds, allocate more funding so that everyone who needs care can get it.
No one living with AIDS should have to die or become ill because they can't afford medications. Increase funding for the AIDS Drug Assistance Program.
Take religion out of the AIDS healthcare crisis – fund prevention programs that have programs based on science and experience in the field, not "faith-based" programs that don't have a prayer of stopping the spread of the disease.
Senator Carl Levin: 269 Russell Office Building, U.S. Senate, Washington, DC 20510-2202. Call 202-224-6221. Email Senator Levin by visiting the Contact Center on his website at http://www.senate.gov/~levin.
Senator Debbie Stabenow: 133 Hart Senate Office Building, Washington, DC, 20510. Call 202-224-4822 or TTY: 202-224-2066 or e-mail [email protected].
To find your U.S. Representative visit Project Vote Smart at http://www.vote-smart.org or call the U.S. Congressional Switchboard at 202-224-3121.
