April 11, 2008
WORDS OF WISDOM
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Meredith takes a stand against AIDS |
In 1966, James Meredith embarked alone on the March Against Fear, a 220-mile walk from Memphis, Tennessee to Jackson, Mississippi. The March was intended to encourage African-Americans to register to vote and make an impact on elections. Meredith was no stranger to courageous acts: He had already become the first black student to enroll in the University of Mississippi. On the first day of the March, Meredith was shot by a sniper. The next day, civil rights leaders, including Martin Luther King, Stokely Carmichael and Floyd McKissick, continued Meredith's journey. Between 2,500 and 3,000 black Mississippians were registered to vote along the route, which ended in rally of 15,000 people in Jackson.
Now, 42 years later, Meredith lives in Jackson and is lending his support to another Mississippi march, the Stand Against AIDS, organized by the Campaign to End AIDS. Hundreds of people living with HIV/AIDS and their supporters will walk from Jackson to Oxford for the September 26 presidential debate. They will be joined by hundreds of others from around the country who are coming in caravans. Together all these activists will remind the presidential candidates that they must make ending AIDS a priority.
When Meredith was contacted by AIDS Action in Mississippi field organizer Valencia Robinson (who found his number in the Jackson phone book) about the Stand Against AIDS, it didn't take long to convince him to endorse it.
"AIDS is to poverty what voting was to the civil rights movement," Meredith told the Update. "When you give somebody the right to vote, it means you're giving give them all these other rights. If you raise HIV to the level of full discussion, you raise it to the level where it is a public policy to deal with, as well as all other issues of poverty." In a conversation with the Update, Meredith shared extraordinary insights about AIDS, poverty, homophobia—and why he's not actually marching this time around:
Housing Works Update: Why did you want to get involved with Stand Against AIDS?
James Meredith: This is really the same issue that Dr. King was dealing with when he got killed: poor people. If the Campaign to End AIDS is successful, it will change everything by focusing on the conditions and the circumstances of the poor. This will be a thousand times bigger than the right to an education.
Why do you think this march can have an impact on the fight against AIDS?
What impressed me the most is that the leaders [of the Stand Against AIDS] themselves were people who had AIDS and were ready to tell the world. They knew the people who were not getting treatment in Mississippi. I'm hoping when they go through these communities, people will come forward.
Why aren't you marching yourself?
I'm 75 years old, and I don't have HIV. If I march, then the focus will be on me. I don't want to be a spokesman. What the march needs, and I hope the organizers do this, is to pick one spokesperson who is willing to talk when the media comes. I was the spokesman for all of my activities, and I made sure no one else got in the way. Everybody talks about the three branches of government. But I realize that the fourth branch is the media.
Do you think black leaders are doing all they can to address the AIDS epidemic among poor black people?
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Robinson and Meredith discuss activism |
No. Educated black people have been neglecting poor people. The blacks that have gone to Ole Miss since me have just wanted to get money. They are the ones in the best position to raise the issue about the poor, but we are victims of our realities. One of the biggest things about educated people is that if there's something they don't know about, it can't be important. America has a public policy of not talking about the poor.
What role has homophobia played in the spread of AIDS in the black community?
It has been a completely nondiscussable subject in the black world. I know people in Jackson who died of AIDS, but nobody knows it but insiders. It's primarily because of the shame. Because people with AIDS were accused of being homosexual, there's a stigma, even of people who got it from a blood transfusion. But I think that America has made things better. It is an open conversation. In the grocery store yesterday Oprah Winfrey and her friend were on the cover of a magazine saying, 'We're not homosexuals, but if we were we'd say it.' For the high echelon, that's how it has operated. But poor people operate 40 years behind everybody else. The truth has to be told but has to be told by the people who have already dealt with it.
Does the unwillingness to talk about poverty in the U.S. contribute to the lack of discussion about AIDS?
Absolutely. Even in this presidential campaign, one of the best we've had in recent times, they are not talking about the poor. And America and its public policy won't discuss AIDS in America. They'll discuss it in Africa. For the past five, ten years, you would think that no one in America has AIDS. When the epidemic started, and people were talking about it in San Francisco, most of the people with AIDS there were not identified as poor people. Now most of the people who don't have access to medication in this country are poor people.
March 14, 2008
NOW IS THE TIME...
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Conway became a full-fledged AIDS activist after YAI |
Do you want to work to end HIV/AIDS as an epidemic, but aren't quite sure how? Are you between the ages of 16 and 26? Are you available from June 25 to 29? If you answered yes to all three questions, then listen closely to these three words that could change your life: Youth Action Institute.
Just send in an application by March 22 and you could be headed to Albuquerque, New Mexico, for the Youth Action Institute, the jump-off for an incredible summer-long journey to AIDS activism. At YAI, participants discover how they can join in the fight against the epidemic from experienced activists living with HIV/AIDS, network with other young people from around the country, and learn the basics of AIDS advocacy from grassroots organizing to lobbying to direct action (i.e. protests and demonstrations!).
When Chakena "C.C." Conway, 21, applied for YAI, she didn't know what to expect. Conway, who was prenatally infected with HIV, had long volunteered in schools, teaching about safer sex. But YAI taught Conway that AIDS activism is more than just prevention and education. "YAI stirred up a lot of passion in me," said Conway, who participated in her first-ever protest "Trick or Treat" protest in Philadelphia, and has since participated in the protest in Myrtle Beach and a HASA for All rally in New York.
But Conway's biggest accomplishment was her YAI project.YAI participants also plan an eight-week project to work on once the June session is over. The goal of the project is to work with a local AIDS organization and YAI staff to build participation in the Campaign to End AIDS, a national network of people living with HIV/AIDS dedicated to ending AIDS worldwide. Conway and her Miami cohorts, including Quintara Lane and Fredia Webster, spearheaded a caravan to Alabama to participate in the pool party for Caleb Glover in Silver Hill, Alabama where Caleb, then 2 years old, had been denied entry to a swimming pool because he was HIV-positive.Caleb's situation resonated with Conway, who was also HIV-positive since birth. "I put myself in Caleb's position, and really felt sympathy for what he went through," Conway said. "He was too young to understand what was going on, and it was like I felt it for him."
Conway's all-youth caravan exceeded their fundraising goals and their youth proved a disadvantage in only one case: In Florida, you have to be 25 to rent a van. But the caravan found an elder to co-sign, and the caravan exceeded fundraising goals and was even able to purchase a GPS for the van, which was "key" to surviving the 10-plus hour journey, according to Conway said.
Applications are due March 22! For more information contact Johnny Guaylupo at johnnyc2ea@yahoo.com, Lolisa Gibson at lolisadede06@yahoo.com, or Kahlo Benavidez at kahlo@santafemc.org. To read about last year's YAI click here.
February 29, 2008
VIRGINIA IS FOR C2EA LOVERS
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Fordham, one of C2EA-Virginia's founders |
As Greg Fordham sat on the Ryan White Community Planning Group in Norfolk, Virginia, he became increasingly frustrated by HIV/AIDS care providers dismissing the transportation needs in his community. Most people affected by HIV/AIDS live on one side of Norfolk but the services are on the other. "I got tired of other people deciding what was right for me and knowing what was wrong," said Fordham, who was diagnosed with HIV in 1995 and also lost his legs during a car accident in 2003. "The reason we're discarded most of the time is because people don't realize it's you they're talking about. It's just 'those people, those people.' I became an activist when I realized I was one of 'those people' they were talking about."
Since that realization, Fordham has worked with other activists in Norfolk, Virginia to launch the state's Campaign to End AIDS chapter. In 2005, Virginia ranked tenth highest in annual reported cases of HIV, and black males in Virginia were nine times more likely to be diagnosed with HIV/AIDS than white men, and black women were four times more likely than white women.
Virginia's official status makes it the 14th C2EA chapter. "We in Virginia needed a collaborative effort to get together and fight cohesively," said Janelle Parsons, who lives in Suffolk County Virginia, was diagnosed with HIV in 2003, and is also one of C2EA Virginia's founding members. Like Fordham, Parsons attended the presidential debate rally in Myrtle Beach and was inspired by the enthusiasm of C2EA members.
Fordham agreed that there needed to be a cohesive network of HIV-positive people in the state, "People don't put their heads together to set up a plan."
Fordham, 47, learned about C2EA after meeting national organizer Larry Bryant at a Staying Alive conference in New Orleans. Fordham's belief in what C2EA could accomplish was solidified during his first conference call, when people throughout the country were eulogizing former C2EA South Carolina co-chair Stephanie Williams, who died in October. Through C2EA, Williams and her friend Karen Bates spearheaded a powerful network of people with HIV/AIDS in South Carolina. That network was instrumental in securing millions for poor people with HIV/AIDS that ended the state's AIDS Drugs Assistance Program waiting list. "That just blew me away," said Fordham. "I knew I really need to be a part of this."
While most of the members of the C2EA Virginia chapter are concentrated in the Norfolk-area, the group hopes to expand to the eastern shore of the state, where the rural population is often forgotten about—but to make sure that 'those people' are speaking for themselves. "You never know what the injustices are in other places," said Parsons, who also works for the Norfolk AIDS service organization ACCESS. "I'd like to find out what they are first and work to mobilize with them. There's no limit to what we can do."
January 25, 2008
TALKIN' ABOUT DEM AIDS
Edwards' daughter and U.S. Reps attend
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C2EA-SC's Karen Bates listens to Edwards |
On Martin Luther King Day in Myrtle Beach, S.C., politics was in the air, food and water—CNN pundits and campaign staffers seemed to outnumber locals in the lead up to Monday night's Democratic presidential debate. Candidates' supporters lined the streets heading to the Palace Theatre as they waited for their favorite candidates to arrive for the evening's bicker-fest. But Campaign to End AIDS (C2EA) activist Ron Crowder had a different agenda. He hadn't driven some 10 hours from Nashville just to cheerlead for a favorite Democratic candidate but to make sure that everyone on the podium made ending the AIDS epidemic a priority.
"I'm here to get the word out that we need universal health care, we need AIDS funding here and abroad and we need a president who will care about AIDS, not just during an election year. We intend to keep the pressure up," Crowder said at the C2EA "Rally to End AIDS," which took place three hours before Sen. Barack Obama and Sen. Hillary Clinton stopped just short of telling one another "Yo mama so fat..."
Crowder was one of some 125 activists who gathered from seven states for the rally. Despite uncharacteristically chilly weather, folks from Howard University Youth AIDS, D.C. Fights Back, ACT UP Philadelphia, Health GAP, Title II Community AIDS National Network, the CARE Team of Myrtle Beach and SisterLove joined the C2EA event. After a planning session at a nearby Starbucks, the activists descended on a field outside the Palace Theatre where they held up AIDSVote.org signs bearing the names of the different presidential candidates and chanted "Presidential Candidates! End AIDS in '08!" People who are currently homeless stood side-by-side with lawyers who stood next to recovering addicts who stood next to university students, and the diverse crowd drew most of the attention away from Democratic party activists, a man dressed as a "Y" (apparently symbolizing youth) as well as coal and anti-coal supporters.
"These are people living and dying with the disease. People working with depleted resources," said Larry Bryant, the HIV-positive C2EA national organizer who was one of the planners of the rally. "We were not there as part of the Obama club or the Hillary fan club, but as voters demanding attention to the issues."
An AIDS mini-debate
This rally was markedly different from the last major debate-centered AIDS event, a "Trick or Treat" protest in Philadelphia where candidates were criticized for failing to release an AIDS plan. Now that all the Dems have released AIDS plans (check out AIDSVote.org for all the details), this rally praised the candidates—though didn't endorse any—with representatives from each candidate invited to speak. Rep. Al Green (D-TX) spoke for Obama and Cate Edwards spoke for her father John Edwards. Although Clinton didn't send an official representative, her supporter Rep. Donna Christian-Christensen (D-VI) was also a speaker.
Cate spoke of her father's AIDS plan, and though the crowd chided her when she incorrectly said there was an ADAP waiting list in South Carolina, she won their affections by illustrating her father's comprehensive AIDS plan. "HIV/AIDS is an issue that I believe doesn't get the attention it deserves," she said. She ticked off the Edwards campaign commitments to HIV prevention based on science rather than ideology, age-appropriate comprehensive sex ed, lifting the ban on federal funding for needle exchange, universal access to HIV treatment by 2010 and $50 billion for global AIDS in the next five years. Click here for the video.
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Isaac Henry, Crowder and Rep. Al Green show C2EA pride |
Green spoke of Obama's strong committment. "People are suffering for no reason," he said. "Properly fought, we can end AIDS. Obama can do that. He believes in liberty and justice for all." Christian-Christensen, who like Green, is also a member of the Congressional Black Caucus, stumped for Clinton, saying, "She has the best health plan."
Other speakers addressed the points of the C2EA platform which is to:
- Fully fund quality treatment and support services for all people living with HIV
- Ramp up HIV prevention at home and abroad, guided by science rather than ideology
- Increase research to find a cure, more effective treatments and better prevention tools
- Fight AIDS stigma and protect the civil rights of all people with HIV and AIDS everywhere
SisterLove founder Dázon Dixon Diallo spoke of the need for prevention justice and Lolisa Gibson, 21, with the C2EA Youth Caucus, gave a poignant speech about being born with HIV and the need to fight stigma. "My mother didn't want anyone to know I was born with HIV because then they'd know I have it," she said. "The world still looks at HIV as something bad. The only way to stop stigma will be if we are the ones who stop it."
Hitting the bars
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Park and Obama talk microbicides |
Post-rally, about 20 activists, or "Team Bird Dog" as Health GAP's Kaytee Riek named them, headed to the debate parties for Clinton and Obama at nearby bars. The teams cheered when Clinton was asked a question that mentioned HIV/AIDS (though the question didn't actually address it directly). While Clinton was a no-show to her party, Obama showed up and shook hands, giving bird-doggers—who sat cross-legged by the stage to make sure they were in the very front when the candidate arrived—a brief moment to ask questions. First time bird dogger Christine Park asked Obama about his commitment to fight violence against women and its link to the feminization of AIDS. He said he was committed to that, and because of his support of female-controlled prevention efforts, he sponsored the Microbicide Development Act (see last week's Update story). Currently the MDA is floundering and advocates hope it will go to committee in the House and the Senate.
"I was pleased with his responsiveness, but now we need to follow up on it and makes sure he sticks to his commitments," said Park, the campaign organizer for the 41 Million Strong Campaign, which is an organization of women of color united to raise awareness about and demand an end to Violence Against Women and HIV/AIDS.
Following the success in Myrtle Beach, C2EA will continue to push candidates nationally as well as locally to fight HIV/AIDS. "The most exciting part of the rally was hearing all those voices demanding an end to HIV/AIDS on the national level," Bryant said. "Imagine that energy if they can do it back home? They will scare the hell out of their city council members."
January 11, 2008
Nothing Could be Finer...
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Myrtle Beach: A beautiful place for an AIDS rally |
C2EA members from more than a dozen states, including Alabama, Arkansas, Delaware, Florida, Georgia, Louisiana, Maryland, Mississippi, North Carolina, Tennessee, Texas, Virginia and New York, as well as the District of Columbia, plan to attend the Myrtle Beach rally.
"During the period that South Carolina is the focus of the '08 presidential campaign, we want the Democratic candidates to speak out and recommit to taking the steps necessary to end the AIDS epidemic right here in our state, across the U.S., and around the world," says Karen Bates, the openly HIV-positive co-chair of the Campaign to End AIDS/South Carolina (C2EA-SC).
South Carolinians suffer disproportionately from HIV/AIDS, and the state has one of the highest death rates from AIDS in the nation. As recently as last May, the state had over 500 residents on a waiting list for AIDS medication, and several died while waiting for treatment.
In response, C2EA-SC led a successful effort hwupdate.org/update/2007/06/south_carolina_adap_victory.html to persuade the South Carolina Legislature to contribute millions of dollars to help poor South Carolinians living with HIV/AIDS get access to treatment. C2EA-SC has also helped to develop leadership among people living with HIV/AIDS to speak on issues that connect us locally, regionally and nationally on important HIV/AIDS issues.
Four demands for the candidates
The Rally to End AIDS will include HIV/AIDS speakers from Georgia, Louisiana, Tennessee, South Carolina and Virginia and will bring C2EA's four demands to the presidential candidates at the Myrtle Beach debate. Those demands are:
- Worldwide access to quality healthcare and supportive services for people living with HIV/AIDS — including in the U.S.
- Ramped up HIV prevention at home and abroad, based on science and not political ideology
- Expanded research to find a cure, more effective treatments and better overall prevention tools
- A commitment to fighting AIDS stigma and to protections guaranteeing the civil rights of all people living with HIV/AIDS
The day will include: breakfast/gathering for the caravan riders; basic training on talking to candidates, media and the public; and opportunities to join other debate-related activities.
The Campaign to End AIDS is a national network of people living with HIV/AIDS and their allies working to develop the political will to end the AIDS epidemic. C2EA is known for its short-notice activist car-caravan actions. Last September dozens of C2EA members from around the country received widespread attention when they converged on Silver Hill, Alabama to protest hwupdate.org/update/2007/09/sweet_home_alabama.html an incident involving an HIV-positive toddler barred from an RV park swimming pool.
For more information on participating in a caravan or attending the Rally to End AIDS, contact Larry Bryant at bryant2@housingworks.org or 202-408-0305.
December 21, 2007
NOT A PRETTY SITE
doesn't offer much hope
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What must be done for HRSA to take action? |
Greg Stokes spent years working as an executive assistant to the late Sen. Tom Eagleton and current Senate minority leader Harry Reid, so when he retired to Puerto Rico, he thought he was done with politics. But Stokes joined the AIDS Taskforce for the San Juan eligible metropolitan area. And then he met a fellow North American named Joe*, who, Stokes says, died in November after a month of being repeatedly refused AIDS medication from hospitals and clinics in San Juan.
"There are so many people who have died because they didn't have medicine, but people here are scared to come forward," Stokes said. "Well, here's a person right here who died because of lack of access. It's just a horrible, horrible situation."
Joe, 36, moved from Iowa to Puerto Rico to fulfill a lifelong dream of living on the island, but he didn't come prepared: He had no documentation of his HIV status and only two bottles of medication from the Los Angeles ADAP. Even after Joe had a Western blot test confirming he was HIV-positive, Stokes says no hospital or clinic would provide medication without another test backing up the Western blot. While Joe waited for the results of that second test his health deteriorated rapidly. He developed dengue fever, diarrhea and had difficulty walking. According to Stokes, even when Joe's CD4 count was hovering around 100 and even when he was on a ventilator, Joe never received medication to fight his HIV.
Two weeks ago, Stokes spoke up about Joe. He shared the story about his friend with Sheila McCarthy acting project officer for San Juan Puerto Rico Title I funds, and Ledia Martinez, project officer for Puerto Rico Title II funds. McCarthy and Martinez were in Puerto Rico to carry out the Human Resources and Services Administration's (HRSA) "comprehensive visit" of the Commonwealth. For months activists in Puerto Rico and the U.S. have been pressuring HRSA to take control of federal funding for AIDS services in Puerto Rico because mismanagement and fraud have led to a crippling of its AIDS infrastructure. Puerto Rico receives more than $53 million in Ryan White Care Act funds but activists on the ground have documented dozens of case of people unable to access medication. Meanwhile, the island continues to offer no prevention programs for IV drug users, who account for a majority of new infections. More than 30,000 people in Puerto Rico have HIV/AIDS, and more than 19,000 Puerto Ricans have died from AIDS.
However, McCarthy and Martinez were in Puerto Rico merely as part of a HRSA visit that was not prompted by recent phone zaps and demonstrations in New York and Washington, D.C. insisting that an independent entity oversee Puerto Rico's AIDS funds distribution. Stokes says the duo told him that they "couldn't really answer his question," and that others who asked similarly challenging questions also got no response.
"They don't acknowledge there's an emergency here, just like the state health department of city doesn't acknowledge the problem," Stokes said. "We're short doses of medication, there is rampant corruption and political cronyism. These are chronic problems that have been around a while." The Update's request for information about the site visit from HRSA yielded only a brief statement summarizing skeletal facts about the visit.
The last comprehensive HRSA evaluation of Puerto Rico took place in December 2003 and the last comprehensive visit for San Juan took place in June 2006. HRSA plans to compare the findings of December's trip with the 2003 assessment. That comparison, which will be written by two consultants who accompanied McCarthy and Martinez on the visit, will take place over the next two months, but will not be available to the public.
As the roadblock to the distribution of federal HIV/AIDS dollars in Puerto Rico shows no signs of coming down, HRSA has still not taken any steps to appoint a third-party intermediary or any of the steps the Health and Human Services secretary is allowed to legally enforce that Ryan White CARE Act dollars are spent appropriately. And there are also shake-ups in HRSA personnel, such as the shifting of McCarthy to HRSA policy director. A HRSA spokesperson wouldn't comment on personnel changes.
Continuing crisis
There is more bad news to come in Puerto Rico. According to National Minority AIDS Council assistant director of Government Relations and Public Policy James Albino, a pending Office of the Inspector General (OIG) report will demonstrate that Puerto Rico's ADAP program will have to return an additional $28 million to the federal government, because it was not distributing medication appropriately. While there has been no official confirmation, insiders say people may have been receiving medication who shouldn't have due to fraud—but instead of figuring out the source of the fraud, people were summarily cut from ADAPs overburdened rolls.
One insider who asked to remain anonymous because he works for the health department and fears retribution says he received a letter from ADAP that he would no longer be eligible for ADAP that month would have to pay $1,000 to $2,000 in copays, which he said he can't afford.
"The health department is punishing people that have been adhering to meds," said Anselmo Fonseca, an HIV-positive Puerto Rican and long-time activist. "They are taking away people's only source of security and punishing them because the system is going wrong. It's homicidal. If I had my way, I'd shackle these people up."
The OIG would not comment on the upcoming report, because the Puerto Rico Health Department has yet to produce its rebuttal. The 2005 report of the Puerto Rico Health Department from 2001 to 2002 recommended the Puerto Rico Health Department refund to HRSA $1,567,993 for unallowable costs, $1,117,831 for medications that were not purchased at the lowest price available and make numerous accounting and other reforms. The Puerto Rican Health Department's rebuttal disputed many of OIG's claims.
*"Joe" is a pseudonym to protect the privacy his family requested of Stokes.
December 7, 2007
THE MANY FACES OF AIDS: A MESSAGE TO MY BROTHERS AND SISTERS IN THE GAY COMMUNITY
World AIDS Day, San Francisco, California
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Housing Works President and CEO Charles King |
Thank you for inviting me to join you today in commemorating World AIDS Day at the National AIDS Memorial Grove here in this beautiful park. It wasn't until I arrived this morning and Tom asked me when I had last been here, that I recalled that the last time I walked through these hallowed grounds was not quite four years ago with my partner, Keith Cylar, scarcely five weeks before he died.
You know, at least from superficial reports, today ought to be a day of celebration. Just two weeks ago, UNAIDS announced a recalculation of the global AIDS pandemic, reducing the number of people living with AIDS world-wide from 39.5 million to 33.2 million persons, and the number of annual deaths from 3 million persons to only 2.5 million.
Not only that, but there is also considerable news on the treatment front. The latest generation of treatments is so effective that I heard Martin Delaney of Project Inform just last month declare that even people who months ago had what were considered only salvage options, assuming they have access to treatment of care and are reasonably adherent, can now expect to die of maladies related to old age, and not conditions associated with the virus.
Sadly, it takes only a slightly more penetrating look to see why this is emphatically not a day for celebration! The UNAIDS announcement was largely due to statistical adjustments, and with a few exceptions, had little to nothing to do we any meaningful success in our efforts to end the disease. And even while UNAIDS was lowering its figures, the Centers for Disease Control is reportedly struggling with how to make the politically sensitive announcement that it has been under-forecasting the rate of HIV infection in the United States for the last several years by nearly 50%. At 2.5 million annual deaths, AIDS is still the world's leading killer, and new infections around the globe still continue to soar among young women, girls, injection drug users, and, above all, young men who have sex with other men.
As for Martin Delaney's prognostications, his qualifier is critical. For the truth is that less than 50% of the people living with HIV here in the United States have access to primary care, much less the latest greatest drugs couple with sophisticated lab tests that are read by HIV-specialty care providers. And around the globe, less than one third of people who are in need, as defined by an appallingly low t-cell count of less than 200, have access to any treatment, much less access to the latest and greatest.
The sad and damning truth, my friends, is that while many of us merrily pop our pills every morning and go on with our lives as if the crisis had ended, we are still losing that battle against the AIDS epidemic in the United States and the pandemic around the globe.
Now this is the point in my speech where I usually rail against the powers that be. I point out that ending this pandemic is already possible even without a vaccine or a cure, that it's not rocket science, just common sense, and then go into my rant about how it is not a lack of resources, but a lack of political will. All of the above is, in fact, quite true. It's just not for today's speech.
Instead, standing here as I am in San Francisco, pulsing with the heartbeat of Gay America, I'm moved to ask why so much of the gay community, my community, has given up on the fight against AIDS. I really don't mean to give offense. And while I have been accused at times of being provocative, it's a sincere question: Why has so much of the gay community walked away from the battle against AIDS?
Some of you here today are perhaps too young to remember the way it was in the 80's. First there was the quiet dread, which grew to a sense of terror as friend after friend began to get sick, quickly loose weight, and then die. There was that awful sense of helplessness, confusion and then rage as we died and the world did nothing. And then we began to organize and to fight. I remember attending my first meeting of ACT-UP New York in the summer of 1987. Standing in the back of a packed room at the Gay and Lesbian Community Center, I found myself heaving dry sobs, hoping no one could see my visceral reaction.
At last there was something I could do. I could fight back. And even if we didn't win, I wouldn't be going down alone. At the time, I was still HIV negative. But, like many others in my circumstance, AIDS had already taken over my life, dragging me out of the closet and, in doing so, effectively destroying my career as a young Baptist minister. So it didn't matter that the virus had not yet tainted my blood. As a gay man, I was living with AIDS, and I was willing to do what ever it took to bring the plague to an end.
The next three years were a blur of adrenaline: Fighting back at the Republican Convention in New Orleans, handcuffed to a bureaucrat's desk in New York City, scaling the walls of the CDC, chaining ourselves to the FDA, planting tombstones at the NIH and then throwing colorful flares when the police on horseback began to charge our line.
Throwing our bodies on the line, we were a veritable band of brothers, fatalistic, cynical, but willing to fight to the end. The AZT chant said it all: "One drug, a billion dollars, big deal!" But then things really did begin to change. We had forced the government, and scientists and the health care industry to respond. And so we started daring to hope.
I hope none of you think I am romanticizing those horrible days. And I don't want anyone to think I am discounting the great number of lesbians and somewhat smaller collection of straight allies in our midst. But for gay men, it was inevitably a different experience. To be sure there was a lot of love, and even a fair amount of sex. But all too often the guy who had led the charge, or who had told the funniest stories sitting up overnight in jail cell, showed up at the next week's meeting with those horrible purple lesions that inevitably spelled death…and we tried not to pull away even as we looked furtively at our own bodies to make sure we had not yet been tagged by the reaper.
In the 90's the time for marching seemed to have at least faded, if not going completely away. The government spigots had begun to open, as had private pockets, to an unparalleled degree. We had a new challenge. Many of us who had manned the barricades felt called to undertake the challenge of building organizations to serve our own, and then to serve others who had been left out. Some of us built housing or expanded services, while others went to work in health care and in research, or even the bureaucracy of government, all still seeing our every day's work as a critical part of the same struggle. Even as we were building new careers, we told ourselves we were still a part of bringing AIDS to an end.
Maybe it occurred earlier, but I still see Andrew Sullivan's article, "When Plagues End", published in the New York Times Sunday Magazine on November 10, 1996, as the turning point. Perhaps he was only verbalizing the sentiment felt silently felt by many others when he declared, "For me the AIDS crisis is over." But those words, whether spoken by Sullivan or only heard in our own minds, gave permission for thousands of gay men and our lesbian comrades, even those of us living with the virus, to abandon the battlefield, secure in the knowledge that, for us, at least, the crisis was over.
There is no denying that a material change had taken place. I remember in 1989, going with Keith Cylar, my now deceased partner to get his test result after a bout of thrush. Though he lived until 2004, the threat of death never lifted. When I, on the other-hand, sero-converted shortly after the turn of the century, it was already clear that I would have a full range of options that would allow me to manage the virus well into my senior years. But I have to admit that I am also in an extremely privileged position. Not only do I have great health insurance and personally know some of the best AIDS specialists in the world, but even if I lose my job, I live in a state that guarantees that I will always have access to health care, including even the most expensive AIDS medications.
It wasn't just individuals who moved on once HAART therapy became available. Rather, it seems that sometime in the late 90's, the entire organized gay and lesbian community voted by a clear majority that it was time to move on from AIDS to more pressing issues.
This consensus was driven home to me just a couple of years ago, when I was invited to keynote the annual banquet of Equality Alabama, and specifically to speak on the Campaign to End AIDS. A few weeks before the event, I received an e-mail indicating that the schedule had been revised. Evan Wolfson, of Marriage Equality had been invited to keynote in my stead. I called the chair of the planning committee to inquire and was told, "Most of our membership just felt that marriage is a more pressing issue for us right now."
As consolation, I was given a workshop that afternoon scheduled for the same time as Evan's workshop on the gay marriage campaign. Now, I count Evan as a friend, and I certainly don't want to sound like sour grapes, but the marriage workshop was packed out, standing room only, with more than two hundred people in the room. I had an attendance of five, two of whom were already die-hard C2EA activists.
Would it surprise you if I told you that out of several hundred people in attendance at the banquet that night, only a tiny handful were people of color? Would it surprise you to know that the largest constituency of people living with HIV in Alabama is men who have sex with men? And would it surprise you to know that more than 70% of people living with HIV in Alabama are African American?
I think you and I know why the gay community moved on once HAART became available. Let's face it, Andrew Sullivan was right. For the vast majority of white gay men of even moderate income in the United States, AIDS ended as a crisis once the drugs came on line. We no longer had to watch our friends die or live ourselves in fear of the plague. In fact, whether because we heeded prevention advice, or because we were just lucky, the statistics suggest that more than 75% of us are HIV negative. And because we often travel in packs that look like ourselves, AIDS for many of us is no longer even personal.
Of course the story is completely different if you are a Black gay or bisexual man. In that case, the odds are closer to one in two that you are infected. And you are far more likely than a white man to learn of your infection after you have had an AIDS-defining event, meaning the available treatments are going to be far less successful. While less dramatic, the difference is also obvious if you are a Latino gay man in the United States today.
I know that New York, San Francisco and L.A. have all at one time or another claimed to be the epicenter of the AIDS epidemic in the United States. But a recent study underscores what many of us have known for a while now. The true epicenter of the epidemic today is Washington, D.C. In our Nation's capital today, now more than one in every 20 people is living with HIV. And the more damning statistic: One out of every 7 Black men living in Washington, D.C. is infected with HIV….and, of course, the lion's share of these men are men who are having sex with other men, whether we claim them as members of our community or not.
The reality is that AIDS is no longer so much a gay disease in the United States as it is a disease of race and poverty. And that brings to light a dirty secret about the organized and politically engaged gay community. We are overwhelmingly white and reasonably well-off, and our movement is almost exclusively about rights for ourselves and people like us.
The recent debate over the exclusion of persons of transgendered experience from Employment Non-Discrimination Act sadly makes my point. What does it say about us that Barney Frank, with the full support, I might add, of Nancy Pelosi, could so easily drop transgendered people from the ENDA bill that just passed the US House of Representatives? Well, if nothing else, it clearly says that no matter how much trans folk have fought side by side in the trenches with gay men and lesbians, we still don't fully claim them as our own. Trans people are "other", and as other, are expendable.
It was somewhat gratifying to see the number of LGBT groups who came out in opposition to this horrible betrayal. But, as it turns out, the largest of our organizations, the one to which we contribute as a community by far the largest dollars, the Human Rights Campaign Fund, had been secretly pressing for this action all awhile, having only recently been shamed into trans inclusion in the first place.
By the way, speaking of Nancy Pelosi, can anyone hear explain to me how we could let her add $28 million to the Federal government's existing annual $176 million in funding for abstinence only education without us raising a howl of protest? Pelosi's justification was that $28 million was a small price to pay for getting other progressive funding passed. But that's a crock, and a dangerous one at that. Not only does abstinence until marriage not work, but it is homophobic to its core, perpetuating among the children it claims to serve the myth that sexually transgressive people are morally degenerate. Even more, federal grants for abstinence-only-education fund the infrastructure of a right-wing movement dedicated to our destruction. But a Democratic Speaker, representing one of the most progressive districts in Congress, supports funding these organizations to the tune of over $200 million a year.
In a letter published in the current issue of The Advocate about the debate over trans inclusion in ENDA, a reader wrote, "As a gay man, I am tired of being told what I should think and what I should feel just because I am attracted to other men. At a gay synagogue in New York City recently, a straight guest speaker actually said, 'Because you are all gay, I know you will be able to empathize with the plight of Mexican immigrants and their fight for equality.' This kind of knee-jerk stupidity has got to stop, and assuming that because I am gay, I not only relate to but actually understand and care about transgender issues is no different."
I don't believe it is just a coincidence that the larger gay and lesbian community walked of the battlefield when AIDS clearly became a Black disease. It was no longer us who was perceived to be dying. It was "other", and other is always dispensable. Our use of the term "men who have sex with men" and the "down low" serve only to increase the distance. "They" don't claim us, so we don't have to claim them. But imagine how different the world would be if people like Harvey Milk hadn't stood up for people like me when I was a young person growing up in south Texas, still lacking the courage to call myself gay.
It's not just Black gay and bisexual men and trans people that we walk away from when we walk away from AIDS. We've also walked away from many gay white men too marginalized to make it into the life boat, and we have walked away from women and girls, mainly Black women and girls, and folk generally marginalized by the larger society in which we live. The truth is, that when our community turns its back on AIDS, we turn our back on the very idea of civil rights and social and economic justice being our cause.
I need to be clear that I am not picking on Equality Alabama, and I appreciate well that at the time of that conference to which I referred, they were fighting a losing battle against a state constitutional amendment banning gay marriage. The deprioritization of AIDS has taken place among gay organizations all over this country over the last decade. I also want to be clear that I want the right to marriage as much as the next person...and I want all of the other rights that have been denied persons of LGBT experience for so long. But if what we are truly engaged in is a struggle for social and economic justice, it can't just be about my rights.
We in the organized LGBT community are often incredulous that so many African Americans can distinguish their historical struggle for civil rights from our own. Yet, we fail to see the devastation being wrought among African American men who have sex with men in D.C., or Brooklyn or Jackson, Mississippi, for that matter, as intrinsic to us, much less to see the connection between our struggle and that of people living with HIV and AIDS around the globe.
The reality of AIDS is that it is caused by a virus; but that virus would not have created the pandemic that now exists if it were not fueled by homophobia, racism, and sexism. AIDS is a disease that persists as a consequence of economic and social marginalization and discrimination. Whether it was gay men and then Haitians in the 80's, or sex workers and people addicted to injection drugs today, AIDS has been able to wreck its havoc because it has in the main taken the lives of people deemed expendable. And that is why AIDS continues to be the preeminent civil rights issue of our day, whether we want to own it or not.
Even before I had the courage to publicly declare my sexual orientation, I knew to be grateful that God had made me gay. Being gay, I knew early on, went way beyond just being sexually attracted to men. The otherness of my sexual orientation propelled me out of the small-minded fundamentalist community into which I had been born. Being gay forced me to make my own way, to think for myself instead of accepting the given truths with which I had been raised.
Being sexually transgressive made transgendered people my brothers and sisters even without my understanding all of the complexities of gender identity. Being gay required that I understand that sexism persists as the root cause of homophobia… And it didn't take being sero-postive for me to realize some 24 years ago that the first person I knew personally to die from the virus, an African American female sex-worker in New Haven, Connecticut, died for me.
Whether we in the gay community like it our not, AIDS is still our disease. It is ours because the many faces of AIDS, whether gay or straight, male or female, living in Haiti or Southern Africa, Puerto Rico or Washington, D.C., represent our struggle to survive and live our lives whole.
November 9, 2007
HE'S GOING TO DISNEYLAND!
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Caleb keeps on swimming |
Along with some fired-up Campaign to End AIDS activists, HIV-positive toddler Caleb Glover was finally allowed to make a splash at the Wales West RV Resort in Alabama this September, after being denied entry to the facility's pool and showers. That triumph was just the beginning of the ongoing adventures of everyone's favorite (now) 3-year-old activist. His foster mother Silvia Glover—who is far along in the process of adopting Caleb—informed the Update that she was contacted by a lawyer from the U.S. Justice Department about investigating the possibility of a suit under the Americans with Disabilities Act against Wales West. The U.S. Justice Department made clear to the Update that its is still in its earliest exploratory stages, but who knows? We could be reporting on a Caleb's Law in the future.
Meanwhile, the Glovers are going to Disneyland! Brian Hodes, who is organizing a nationwide bike ride on World AIDS Day in honor of Caleb, is also hammering out details to bring the Glovers on an all-expenses paid trip to Disneyland for the closing ceremony of another AIDS bike benefit called AIDS LifeCycle. So far Disneyland has agreed to supply free tickets, and Hodes is working with donors to finance hotel and airfare.
Hodes said that when he spoke to Mrs. Glover and saw a picture of Caleb, he realized the importance of bringing Caleb to Disneyland. "Bless these people. We need more people like this in the world," Hodes said of the Glovers, who have had more than 60 foster children. "This is just my opportunity to pay it forward." Hodes decided to dedicate a World AIDS Day bike-ride to Caleb after hearing about his Wales West saga on Good Morning America. "I just couldn't believe this innocent child could be treated the way he was," Hodes said.
"Caleb will just eat this up," Silvia Glover said. "These riders are people of great compassion. This child has never been to anything like this. There has just been no opportunity or the money, especially with my husband's illness." Dick Glover has terminal cancer, and Caleb is also facing serious health problems. The family is considering installing a feeding tube since Caleb isn't eating well. Still Silvia said, "We will do everything we can to make sure Caleb gets to California."
To find out how to participate in the World AIDS Day bike ride or help Caleb get to Disneyland, e-mail brian@teamutac.com.
September 28, 2007
THE WAIT IS OVER
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Graham is no longer on a waiting list, but he's still waiting |
South Carolina's long, statewide nightmare is over. The South Carolina Department of Health and Environmental Control (SDHEC) announced last Friday that there is no longer a waiting list to receive essential HIV/AIDS medication. As recently as last April the list stretched to 567 people.
"Due to an influx of new funding during this fiscal year and the hard work of the ADAP staff, we have been able to clear the wait list and do not anticipate the need for a wait list for the remainder of this fiscal year," Lynda Kettinger, director of DHEC's STD/HIV division, said in a release.
"We're so excited about the end to the wait list," said Karen Bates, Campaign to End AIDS—South Carolina (C2EA) state representative. "Legislators here are finally taking HIV/AIDS seriously."
C2EA-South Carolina spearheaded a coalition that played a critical role in the state's remarkable ADAP turnaround. Last November, those groups intensified their protests in Columbia, the state's capital, after four people died while languishing on the ADAP waiting list. This year federal funding reduced the waiting list by 93 people, then in June, South Carolina state legislators passed a $7.4 billion budget that included $4 million new dollars for ADAP funding.
The waiting game
Kaih Graham, who was on South Carolina's ADAP waiting list, was thrilled to hear that he can now receive medication through the program; nonetheless, he's not sure when that will actually happen. Graham, who is a member of C2EA, heard about the end of the waiting list from Bates, but didn''t receive a response when he tried to contact his case worker at SDHEC. "The health department doesn't have the most organized people," Graham told the Update Wednesday. "If I didn't advocate for myself, no one would." According to a SDHEC spokesperson, no one working on ADAP was available for comment this week.
Graham went without medication for a year before he successfully was accepted into the drug assistance program this year, where his medication costs are paid for by pharmaceutical companies. While he can still receive his drugs through the program, he doesn't know how long that will last. Now that the waiting list has been cleared, he expects to receive his medication through ADAP after he hears from his case worker.
Making sure folks like Graham aren't lost in the system is just one of the challenges facing South Carolina's activists now that the waiting list is history. If the number of ADAP enrollees or drug prices increases too much or if the legislature discontinues the non-recurring funds it appropriated in the next fiscal year, the state could once again find itself in dire straits.
Rep. Joe Neal (D), who has led efforts to increase funding for HIV/AIDS services, told the Associated Press that ending the waiting list was "great," but also said, "The question is, will we have money next year, or will this only meet this year's need? Unless we're able to maintain, we'll be right back where we started."Bates agreed and said C2EA is working with other groups in South Carolina to make sure that doesn't happen. "Until this year many of the legislators didn't feel HIV/AIDS was a problem in their districts," she said. "Treating people early saves money in the long run and decreases costs due to hospitalization. We just need to keep AIDS on the state's radar."
September 7, 2007
SWEET HOME ALABAMA
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C2EA jumps right in! |
It was a typical Labor Day scene: A man repeatedly lifting and lowering a giggling little boy into a swimming pool on a hot day, surrounded by charmed onlookers. What wasn't simple was who they all were, and how they all got there: The man was Housing Works President and CEO Charles King, the little boy was Caleb Glover, the HIV-positive toddler who had been banned from that very pool two months ago, and the onlookers were activists from the Campaign to End AIDS (C2EA) who had traveled from all over the country to witness this swimming lesson.
"Watching Caleb swimming in the pool shows that stigma can be lifted and that we made a difference," said Serita Agnew, a 53-year old C2EA member who drove from Dallas. "When one HIV positive person is hurt or discriminated against, it hurts all of us."
Ken Zadnichek, the owner of the Wales West RV Resort in Silverhill, Alabama, outraged people living with HIV/AIDS and everyday folks across the nation in July when he banned Caleb from the pool, showers and other common areas of Wales West after he found out about Caleb's HIV status. The incident made national headlines, and when Zadnichek failed to fully apologize for his actions, C2EA began planning its Labor Day "family reunion," at Wales West to call attention to AIDS stigma. This week, it went off without a hitch. Around 60 members of the C2EA arrived from as far away as San Diego and Columbus Ohio, many traveling in all-night caravans from Nashville, Houston, Dallas, Washington D.C., Miami, for a day of camping, barbecuing, awareness-raising and, of course, swimming with Caleb, as his foster mother Silvia looked on.
"Whether or not we affected people's prejudices, and I seriously doubt we have changed Mr. Zadnichek in his heart, we've shown Alabama businesses that if they discriminate against people with HIV there will be a response that will be embarrassing to them," said Charles King, president and CEO of Housing Works, a member of the C2EA network.
Alabama AIDS organizations Alabama Cares and AIDS Alabama declined to participate in the family reunion, fearing that a confrontation could stir up ill-will in Southern Alabama. David Little, executive director of Alabama Cares, said that though he is glad his organization didn't participate, he applauds C2EA for its success.
"C2EA is in the position to do that type of advocacy," Little said. "We're trying to balance funders and the community. We can't take the risk of having a confrontational event."
Cannonball
After an early Labor Day breakfast of eggs, bacon and fruit the bleary C2EA travelers pulled on white shorts with the slogan "HIV+" on one butt cheek and "Campaign to End AIDS" on the other and began enjoying themselves at the RV resort. TV trucks and vans began arriving at 11 a.m., anticipating the noon arrival of the Glovers. About 15 minutes after Caleb and Silvia made it to the park, the pool party got underway.
"I'm really proud of Caleb," said Silvia Glover. "All I want for Caleb is to have a good time. All parents want their kids to be healthy and happy. Caleb might not be able to be healthy, but I'm going to make sure he's happy." Caleb's health is precarious because of complications from HIV and his medication.
The C2EA activists were determined to enjoy themselves on their own and Caleb's behalf, staging swimming races, dropping cannonballs and high-fiving the three-year-old celebrity in their midst. "I went to a new dentist a few weeks ago and he was trying to clean my teeth while standing what felt like a mile away from me," said Colleen Lyons from Houston. "What happened to Caleb happens to all of us on a smaller scale, just by living our lives." And unfortunately what Lyons experienced is all-too-common. A recent study stated that one-fourth of HIV patients report feeling stigma from their doctors.
Yvette Ogletree, 37, who was diagnosed with HIV in 2003 and came all the way from San Diego for the family reunion, remembers having the same fears Zadnichek has. "When I was diagnosed four years ago, I didn't know anyone with HIV. I didn't know I could touch people or that casual contact was safe," she said. "It's a terrible thought and I want to make sure others don't experience the same thing I do."
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King and Caleb make a splash |
After drying off (no problem in the Alabama heat), the activists gathered in a children's playground for lunch and a ceremony in honor of the Glovers and Zadnicheks. Texas C2EA president Byron Montgomery presented the Zadnicheks with a packet on HIV-transmission risk. Then Quintara Lane, 20, gave a powerful speech to Silvia, thanking her for her good work. "As someone who was prenatally infected, hearing what happened to Caleb hit close to home," she said. Lane was part of a group of five Miami youth who were prenatally infected who raised money through grants and bake sales to travel to Alabama.
Then Montgomery led the crowd in a chant of, "C2EA! C2EA! C2EA!" and "Caleb! Caleb! Caleb!" while the young boy played on the playground with the other children in attendance.
Unhappy campers
Despite the fact that the Centers for Disease Control (CDC) says that the chance of HIV transmission through casual contact is "infinitesimal," Zadnichek told the Update on Labor Day that he still has concerns about "child on child transmission." While the CDC has documented a few rare cases where children have gotten HIV through blood contact of open wounds, these incidents have always occurred in extreme circumstances, such as a case where an HIV-positive mother had bloody lesions that were rubbed against her child . There is no record of HIV being transmitted during a one-time interaction between children. Though Zadnichek said he is not worried about adults transmitting HIV in the pool, he is still concerned about the chance of children transmitting the virus to each other. "You know how kids are. Climbing on top of each other, one bleeds, the other touches his cut," he said.
Zadnichek, his wife and staff were cordial to the C2EA visitors but Zadnichek admitted that he took issue with all the fuss the group was making. "In the South, that's not how we do things." He also still holds bitterness toward Mrs. Glover for "dividing the community." The two did not speak during the family reunion.
"I wish no ill will towards Mr. Zadnichek, and if he talks to me, I'll be nice, but I don't think I'll be approaching him," Mrs. Glover said. Zadnichek never approached Glover. "It was never about us discriminating against people with AIDS. It was about wanting to have the information to help Caleb and the other children," Zadnichek told the Update during a ride on his extensive "light railway" train that circles Wales West. "And the Americans with Disabilities Act won't even let us ask some questions. I believe that's wrong." While Little believed Zadnichek's fears are unfounded, he agreed with his calls for more information on child to child transmission, and Little said is beginning a campaign to work on getting the CDC to show the lack of child to child transmission cases.
And not all park visitors were happy about C2EA's presence. "To be honest with you, having people with HIV in the pool scares me," said camper Ted Peaden, from Pensacola, Florida. "One of my sons has an immunodeficiency disorder and he constantly has open wounds. I wouldn't risk having him in the pool."
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Zadnichek minds the gap |
The family reunion also generated largely favorable media coverage in Southern Alabama, including stories on local ABC, NBC, CBS and FOX channels, as well as in the Mobile Press-Register.
Christine Campbell, Housing Works director of national advocacy, helped organize the event, and she said that mixed reactions to it were to be expected. C2EA's four-pronged mission is universal health care; research; prevention, and ending stigma around HIV/AIDS, and Campbell says the last issue can be the hardest to address. "Sometimes working on stigma gets short-changed, because how can you do it?" she said. "Universal access? Easy to grasp. Dispelling stigma is a hard goal to achieve, with unclear benchmarks. But it's just as important as the others."
By the end of the day, it was very clear, however, that one major benchmark had been reached. As she watched the Campaign to End AIDS activists frolicking with Caleb, Mrs. Glover remarked. "It is wonderful to know that we are not alone."
Photos by Laurel Golio