April 4, 2008
THIRD TIME'S THE CHARM
state summit on AIDS
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Eric Bailey, Christine Campbell, LaWanda Burns and Sandra Thompson get recharged during an AAIM 4 Life break by singing 'Going Up Yonder.' |
Things are heating up in Mississippi. Last Friday and Saturday, 75 current and future AIDS advocates—most of whom are living with HIV—gathered in the House of the Lord church in Hattiesburg for the third AIDS Action in Mississippi (AAIM) summit, AAIM 4 Life. Intended to empower participants to get involved in AIDS advocacy, the summit was one of the largest gatherings of people living with HIV that the state has ever seen.
"After three summits, I feel like AAIM is a self-sustaining organization," said Robin Webb, a founder of AAIM who co-organized the first summit three years ago. AAIM was founded in crisis in 2005, when HIV positive people held a community meeting about the lack of state funding for Medicaid and the need for AIDS policy reform in Mississippi. Hindered initially by the effects of Hurricane Katrina, AAIM has rapidly become a force to be reckoned with. In a state where, according to the 2006 CDC study, there are more than 7,300 people living with HIV/AIDS, AAIM has pushed hard for supportive housing for people living with HIV and an end to a cruel drug cap that only allowed Mississippians on Medicaid to have two name brand drugs a month.
The state is facing another Medicaid crisis by refusing to spend $90 million on Medicaid, which, with matching dollars, would give the state $360 million in Medicaid dollars.
One person who is key to tackling the challenges facing Mississippians living with HIV is State AIDS Director Craig Thompson. Thompson, who addressed the crowd at AAIM 4 Life, is working with AAIM field organizer Valencia Robinson and a realtor to develop supportive AIDS housing using HOPWA and Ryan White dollars.
'I really want to end this epidemic'
In addition to Thompson, who spoke about how people with HIV/AIDS in the state need to advocate for themselves because they have more power in the legislature than he does, notable summit speakers included dentist Alicia Rose, who spoke about expanding access to dental care for people with HIV/AIDS, and insurance provider Donald Watts, who talked about how people with HIV/AIDS can get life insurance. But without question, the stars of the summit were the advocates themselves.
On Friday, participants compared notes about the lack of affordable housing, transportation, access to affordable medical care and education. While some folks didn't think they could make a difference on these issues, AAIM field organizer Valencia Robinson pushed people to challenge themselves. "We really pressed the concept of 'How do you advocate when people aren't educated?' Education is a key component of advocacy. People need to know what services we have here and what services we don't," Robinson said. "Even people living with HIV often don't understand, especially the policy side."
Cedric Sturdevant, 42, had never been involved with advocacy until, on the advice of his HIV counselor, he attended AAIM 4 Life last year, which was being held in his hometown of Greenwood. Now he is the new state chair for Mississippi's chapter of the Campaign to End AIDS, and at this year's AAIM 4 Life, he brought five people with him from Northern Mississippi. Diagnosed with HIV in 2005, Sturdevant said he was infected while in a six-year relationship. "Even if you're in a relationship, you still need to practice safe sex. Like most of the younger people today, I thought it can't happen to me. I want to make sure people are educated to know that that's not the case," he said.
Sturdevant was one of the many summit participants who signed up to participate in AIDSWatch in Washington D.C. in May and a 175 mile walk from Jackson to the presidential debate in Oxford, Mississippi, on September 26. "I really want to end this epidemic and do a lot of prevention work," Sturdevant said.
March 21, 2008
WALKING THE WALK
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Meet Eric Bailey |
Securing $200,000 worth of supportive housing for people with HIV/AIDS. A summit in one week. The biggest HIV/AIDS rally Mississippi has ever seen.
These are just some of the challenges facing Eric Bailey, who joined AIDS Action in Mississippi this month as a grassroots organizer. An HIV-positive man with Mississippi roots, Bailey should prove invaluable in expanding the influence of AAIM as the state’s AIDS advocates continue to put pressure on elected officials to create supportive housing for poor people living with AIDS—and firm up plans for cross-country caravans to descend on the presidential debate in Oxford, Mississippi, on September 26. Caravan organizers are hoping to stage the largest AIDS rally Mississippi has ever seen.
Diagnosed with HIV in 2001, Bailey previously served as state chair for Mississippi's Campaign to End AIDS chapter. Bailey sees his role as a black, gay, HIV-positive activist as critical in a state where many people don't understand HIV. "Here in Mississippi, the majority of people are scared of HIV and hell-bent on keeping up stigma," he said. "I'm serving as a role model that you can still be sexy and live a healthy life being HIV-positive."
Bailey, who will now work part time with Valencia Robinson in AAIM’s Jackson office, in addition to maintaining his job as a quality assurance lab technician at Coca-Cola, was born and raised in Bolton, Mississippi, and attended Tougaloo College in-state. His deep roots in the state help him navigate its legislative process. When he met with his U.S. representative Benny Thompson, who is from his hometown, to talk about HIV/AIDS funding, he reminded the Congressman of the cinnamon rolls Thompson gave his grandmother, and her elementary school classmates. Bailey scored an appointment to meet with Haley Barber to talk about putting safer-sex education back in schools because he knew a designer who worked on Barber's son's wedding.
Such ease in the halls of power will be important as AAIM pushes for $200,000 a year that Craig Thompson, Mississippi's bureau director for STD/HIV, pledged for a four-year pilot program to create long-term low-threshold supportive housing for people with HIV. "We’re going to keep the pressure on," Bailey said.
Should AAIM need to mount a rough-and-tumble grassroots advocacy campaign to push lawmakers, Bailey will be right at home. He has co-led efforts such as bringing Mississippians to Washington, D.C., for AIDSWatch, organizing a Mississippi caravan to the Alabama swim-in with Caleb Glover and getting Mississippians to South Carolina for the Rally to End AIDS. But planning these road trips are miniscule to what's coming up in Mississippi this fall.
'Like old women cackling in church'
In anticipation of the presidential debate in Oxford in September, Bailey will help organize a walk from Jackson to Oxford. The pilgrimage is intentionally reminiscent of the walk civil rights leader James Meredith took in 1966. AAIM is working with churches and universities to expand the reach of this event. "AIDS is a big issue with a lot of college students here," Bailey said. "A lot of their classmates are falling dead or looking different."
As with the 2005 launch of Campaign to End AIDS, caravans will arrive from across the country, picking up people everywhere from Alaska to Utah to Idaho to Maine to West Virginia.
"It's time to make an impact and let the candidates know we're not playing," Bailey said. "Mississippi's going to know what's coming. Like the sound of old women cackling in church."
While Oxford, Mississippi has never seen hundreds of AIDS advocates descend upon the city, the city will have preview next week at the AAIM for Life Summit on Saturday, March 29. The Summit will feature discussion on issues affecting HIV/AIDS advocacy in Mississippi. For information on AAIM or the summit, contact Valencia Robinson at robinson@housingworks.org, and check the Update for a report-back from the conference.
July 20, 2007
HOME AT LAST?
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AAIM's Robinson is spearheading the MS housing plan |
"A step in the right direction"— that's the phrase that AIDS advocates in Mississippi keep enthusiastically using to describe a recent victory for poor Mississippians with HIV/AIDS. Last week Craig Thompson, Mississippi's bureau director for STD/HIV, pledged up to $200,000 a year for a four-year pilot program to create long-term low-threshold supportive housing for people with HIV.
"Being in unstable housing only exacerbates HIV. This type of housing is a recognized need in the community," Thompson said. According to the Mississippi Health Department there were 8,540 people known to be living with HIV/AIDS in 2006, an increase of 210 people from 2005. It is not yet known how many of those people would qualify for supportive housing.
Thompson's decision came after a groundbreaking July 12 meeting with AIDS Action in Mississippi (AAIM), the Southern AIDS Commission, My Brother's Keeper, Housing Works and others AIDS groups.
"It's a good thing, finally, for the state to recognize this need," said Valencia Robinson, a field organizer for AIDS Action in Mississippi (AAIM), which has spent the last two years fighting for supportive housing.
"A year ago we couldn't get anyone to even talk about supportive housing," said Jessica Mardis, also an AAIM field organizer. "We're thrilled with Thompson's willingness to fund the pilot program."
Mississippi currently spends no money on long-term housing for people living with HIV/AIDS. The pilot program will be funded by Housing Opportunities for Persons with AIDS (HOPWA) dollars. In the past the state's HOPWA money has gone to transitional housing that lasts a maximum of 21 weeks. The new housing will be available for up to two years and support services such as medical care are expected to be available on-site.
"All we've had since the early '90s is emergency housing," said Dr. Mark Colomb, president and CEO of My Brother's Keeper, Inc. and chair of Mississippi AIDS Advocacy Coalition. "And it was all housing, with no programmatic component. This would be housing-plus."
The July 12 meeting's participants, led by AAIM's Robinson, are going to draft a proposal by July 31 with specifics about how to move forward. "I'm on call for whenever the group gets a proposal together," Thompson said. "I'm cautiously optimistic that the community will develop a proposal that I'm able to work with to expand into more traditional transitional housing."
One issue to work out is whether the new housing will be scatter or cluster site. Housing Works President and CEO Charles King participated in the meeting with Thompson to help lay out the possibilities. "I credit Craig for inviting Charles King to come talk at the meeting and for making this meeting happen," Colomb said. "We've never had providers sit in a room to discuss a change in how that programming is administered."
Mardis said she might favor scatter-site housing so people with HIV aren't segregated from others. But in the world of AIDS advocacy, figuring out the answer to such questions is a nice problem to have.
July 6, 2007
STAR OF THE SOUTH
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Mardis charmed gubernatorial candidate Eaves |
When AIDS Action in Mississippi's Jessica Mardis learned she was nominated for Mississippi ACORN's Young Activist of the Year Award, she started preparing for the ceremony the right way—not by writing a speech, but by readying her pitch about the Early Treatment for HIV Act for one of the event's VIPs, gubernatorial candidate John Arthur Eaves. After she made her impassioned argument about the legislation that could save thousands of lives, Eaves said he would support it. " I would never miss an opportunity for AIDS advocacy," said Mardis. "I eat, sleep and breathe HIV."
Oh, and by the way, at the June 20 ceremony, she won.
Mardis, 30, who was diagnosed with HIV in 1995, is modest about her recent accolade, which is given by the Mississippi chapter of ACORN (the Association of Community Organizations for Reform Now) to the young community leader who most helped the fight for social and economic justice in Mississippi. But she is happy to talk about the accomplishments of AIDS Action in Missisissippi (AAIM), where she is a field organizer. Since Mardis and AAIM's other field organizer Valencia Robinson joined forces a year ago, AAIM has successfully lobbied for supportive housing for HIV positive people in the state, continued the battle to end a cruel drug cap that only allows Mississippians to have two name brand drugs a month, and relentlessly pushed for comprehensive services like transportation and housing for people with HIV. In March AAIM hosted a successful summit of 50 HIV-positive Mississippians. While change has been slow, Mardis is starting to see progress."Through persistence and meeting after meeting, letting people know that we're not going anywhere has started to pay off," she said.
Though Mardis was diagnosed more than a decade ago, she was only spurred to activism by the death of her fiancé in 2005, which left her a single-mother to their baby Gabriel. (Gabriel is HIV negative). Mardis is certain that her fiancé died of AIDS-related infections, though he refused to ever take an HIV test. Mardis no longer felt "ashamed and dirty" about her HIV status—she wanted to do something to help. So she joined the tiny HIV/AIDS support group in her native Gulfport, Miss.
When Housing Works President CEO Charles King came to town in 2005 to promote the Campaign to End AIDS, Mardis decided to join one of seven activist caravans traveling to Washington, D.C. for a historic AIDS activist summit. She took then two year old Gabriel along. "We were only on the caravan for two weeks, but it was an eternity for him," Mardis said. But, she noted, by the end of the trip, even those out of diapers were cranky. "It got a little edgy towards the end, but I don't think it was because of him," she laughed.
Since that journey, Mardis has found her calling, telling her story to anyone who will listen. Her new oustpokenness led to her getting hired by the newly formed AIDS Action in Mississippi. "When I met Jessica, she was still obviously grieving the death of her partner and was unsure of herself, but very eager to be challenged," said Charles King, Housing Works President and CEO. "She still takes each challenge personally and invariably rises to the occasion, to her own surprise."
Honored by her Young Activist of the Year Award, Mardis plans to continue advocacy until she's an old lady. "I plan on living for a very long time," she said. "And I'm very loud so people will be hearing from me for a good long time too!"
April 6, 2007
MAGIC IN MISSISSIPPI
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Claudine Ervin from HUD at the AAIM 4 Life Summit.
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On March 30, a particularly beautiful spring day, advocates and people with HIV from around the state of Mississippi descended upon a small church in rural Greenwood for the second-annual AAIM 4 Life Summit—a day and a half of intense advocacy training, strategy planning and empowerment.
There were approximately 50 HIV-positive men and women on hand to meet with organizers from AIDS Action in Mississippi (AAIM) and Housing Works, and representatives from the U.S. Department of Housing and Urban Development (HUD) and the American Civil Liberties Union (ACLU). Attendees voiced their concerns about housing, transportation, discrimination and access to health care and listened to presentations about how advocacy can create change at all levels of government.
“The summit was a huge success,” says Valencia Robinson, AAIM field organizer. “People were able to sit in on the planning process for what needs to happen in the state for people living with HIV and AIDS. We all came up with plans that we’re going to work on over the next year.”
Keeping it real
Summit attendees were an ambitious and motivated group. Participants didn’t passively take in information from speakers—they grilled them with questions about how to get housing, where to attend public hearings, how HOPWA funds were being spent in the state and why permanent housing was not a priority. They have reason to be fired up: The AIDS death rate in Mississippi is 40 times higher than the national average.
“The group was hungry for answers and glad to have someone who could provide them,” says Christine Campbell, director of national advocacy and organizing for Housing Works. “People from the government are usually pretty scripted in their presentations, but once the representative from HUD heard some of the questions, she changed her presentation and addressed the topics that people were interested in.”
Participants themselves did some of the educating. At one point, a presenter referred to people living with HIV as “AIDS victims.” That made folks uncomfortable until Jessica Mardis, another AAIM field organizer, spoke up and delivered a quick lesson in etiquette. “Each time this person said ‘AIDS victims,’ you could see people cringe!” says Mardis. “After the third time, I had to say something and we straightened her out. People who don’t deal with AIDS issues don’t always know. I don’t think she was used to dealing with people like us who are outspoken when it comes to our needs.”
There were other dramatic moments. Charles King, CEO of Housing Works, delivered a powerful keynote speech about the vital importance of advocacy in fighting HIV and AIDS. “I am moved every time I go to Mississippi,” King told the Update. “The state government is deliberately negligent when it comes to AIDS services and care. But the people who came to the summit have so much heart and determination to make change happen. They are a model of commitment in the face of overwhelming prejudice and hostility.”
Down to business
The second day of the summit was spent in working groups where participants collaborated on action plans and set goals such as fighting stigma in the church, reducing HIV transmission in prisons, educating members of AAIM about HUD and HOPWA guidelines, assuring the existence of safe, affordable housing for people living with AIDS, and finding funds for drug rehab for the homeless.
“As we were developing a plan, people wanted to make sure there was accountability and that the plans made an impact for people in Mississippi,” says Campbell. “I am encouraged by the energy I saw last weekend. There’s a lot of passion in people who want to get things done.”
Last weekend’s summit was different than the previous year’s. Instead of focusing on health care providers, the event brought together people with HIV who are accessing care in the state. The venue also changed and will continue to change each year. “We want people to understand that AAIM is about helping people all over the state, not just those who live in Jackson. And we have to make sure to include people who can’t get to where we are. Providing transportation certainly helped this year.”
Taking it further
By the end of the summit, the group was ready for action. With plans—large and small—drafted and being finalized over the next few weeks, many are maintaining the momentum of the event.
“We have people who want to learn the political process here,” says Robinson. “They want to visit the Capitol and talk to legislators. They are ready to speak up and speak out. They are tired of being silent.”
Within the next few months, participants will work with the prison system to create HIV support groups, attend public hearings for HUD to urge permanent-housing solutions for people with AIDS, and work toward educating churches about stigma and HIV prevention.
Eric Bailey, the newly appointed state chair for C2EA Mississippi says, “By this time next month, the ball should definitely be rolling.”
February 9, 2007
MISSISSIPPI MUD
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The only kind of Mississippi Mud we like |
Two bills come up for vote in the Mississippi State Legislature at the end of this month. Bill 590 calls for $7.5 million in allocations for supportive housing for people with HIV and outreach and prevention. According to Christine Campbell, Housing Works' Director of National Advocacy and Organizing, this is a favorable piece of legislation but it lacks $2 million in matching funds that would generate $4 million dollars in federal Ryan White Care Act money. Ouch.
The other bill, 3077, backed by Mississippi AIDS Advocacy Coalition (MAAC), includes funding to get the federal Ryan White matching money. It would allocate $6 million for two health clinics and prevention programs but offers nothing for housing and transportation. Campbell says that neither bill is perfect and both should be amended, but "we support 590 because safe, decent, affordable housing is essential for people living with HIV/AIDS to maintain their health." That couldn't be more true for Mississippi, where the HIV death rate is nearly 40 percent higher than the national average.
Housing Works satellite AIDS Action In Mississippi (AAIM) is on the frontlines trying to assert the vital importance of comprehensive services like transportation and housing. According to AAIM's Valencia Robinson, community folks would either like to see 590 expand to include Ryan White matching funds or see 3077 amended to include:
- $2 million for housing (rental assistance and supportive housing)
- $500,000 for transportation
- $500,000 for healthcare worker education
- $1 million for unmet needs
Robinson applauds MAAC for prioritizing access to care and treatment across Mississippi, the poorest state in the nation; however she says their bill doesn't go far enough. "What good is quality care if you can't get it?" Robinson says. Jackson-based AAIM plans to petition the legislature. The mindset of the powers that be in Mississippi "is not to put people into housing until people are in care," Robinson says. "Housing isn't a big priority issue." In 2005, Mississippi received $22.9 million in federal funding, $1.7 million of which was from HOPWA to provide housing assistance for low-income people with HIV/AIDS and their family.
Last week, AAIM unsuccessfully tried to advocate for a housing and transportation addendum to 3077 at a MAAC-sponsored consumer legislative training intended to get the community to lobby for the bill. One problem says Robinson, is that ASOs are afraid to bite the hand that feeds them. "We're the first real advocacy organization in the state," she says.
To learn more about the legislative process in Mississippi contact Valencia Robinson at 601 944 1403; robinson@aidsactionms.org or go to www.campaigntoendaids.org/ms
January 20, 2006
FIRST STEP TOWARD JUSTICE
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WHERE IT BEGAN: AAIM's Robin Webb at December press conference launching suit filing |
In December, we reported that Housing Works was among several groups filing a legal challenge to a state law passed last summer in Mississippi restricting Medicaid recipients in that state—who make up 25 percent of the state's population—to five medications, even if a doctor says more are necessary. The policy also limits recipients to two brand-name medications.
The case is moving forward briskly. Last week, in a packed courthouse in Jackson, attorneys bringing the suit argued for an injunction (temporary freeze) against the policy while its permanent fate was decided. The attorneys argued that the policy violates a federal Medicaid law dictating what states can and cannot do to restrict their Medicaid programs, while attorneys for the state argued the opposite. Another hearing toward such an injunction will take place on January 27.
Meanwhile, Mississippi asserts that it has applied for a waiver that will allow Medicaid recipients with HIV/AIDS and hemophilia to receive up to 10 drugs—a move due in part to early pressure from AIDS Action in Mississippi (AAIM), which has partnered with Housing Works in opening an advocacy office in Jackson.
But Housing Works attorney Armen Merjian stresses that "there is currently no such waiver in place, and we will continue this lawsuit fighting for all Mississippians who rely on Medicaid for lifesaving medications, not just those with HIV/AIDS."
AIDS Issues Update will keep you posted on the case.
December 22, 2005
CHALLENGE IN MISSISSIPPI
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STAND-UP GUY: Webb whips up crowd at press conference announcing suit |
Ever since July, when we began covering Mississippi's new policy restricting Medicaid recipients to five drugs (with only two brand-name), we've hinted that Housing Works—which opened an office in the state this fall in partnership with AIDS Action in Mississippi (AAIM)—might take part in a legal challenge to the harsh new rule. And sure enough, last Thursday afternoon in the rotunda of the state capitol in Jackson, reps from HW were among those who called a press conference to announce that eight plaintiffs had filed a suit against the policy.
One in four residents relies on Medicaid in Mississippi, whose restrictive new policy imperils tens of thousands who depend on the program to cover treatment for one or more chronic illnesses, such as cancer, heart disease, hypertension, diabetes, multiple sclerosis, mental illness and/or HIV/AIDS. Medicaid recipients with HIV/AIDS, who generally require three or more branded meds to treat HIV alone, have been informally exempted from the two-brand-name cap but are still subject to the policy's total cap of five meds.
The press conference captured the attention of Mississippi's Clarion-Ledger, which also ran this op-ed saying that the Medicaid policy should assess patient drug needs on "a case-by-case basis." Meanhwhile, an Associated Press story featured plaintiff Glenda Fay Dennis, 52, of Eupora, who requires 13 medications to treat her illnesses. Since the five-drug limit began, "I've been playing a dangerous game of filling five prescriptions each month," Dennis said, "and praying that my one-month prescriptions somehow will last two months or more."
MOVING FORWARD
The lawsuit alleges that the Mississippi policy's "hard cap" on meds—which limits patients to five prescriptions even if a doctor asserts that more are medically necessary—is not legal under federal Medicaid legislation passed in the 1990s. "At that time, Congress told states very specifically the permissible limitations in their Medicaid drug programs, and so-called hard-caps were not one of them," said senior Housing Works attorney Armen Merjian, who filed the suit with lawyers from the Mississippi Center for Justice, AARP Foundation Litigation, the National Health Law Program and the National Senior Citizens Law Center.
"This is such a dangerous policy," said Merjian. "When interviewing plaintiffs for the case, we heard stories of individuals selling household goods and living on ketchup and mayonnaise sandwiches to pay for needed meds, or simply rationing or going without monthly supplies of drugs."
A hearing date in federal district court may come as soon as this week or next, according to Merjian, who notes there is still time for Barbour and the state Medicaid division to amend the policy, such as by allowing doctors to overrule the hard cap when necessary. The case will set an important precedent regarding other states' attempts to impose similar hard caps, says Merjian.
KEEPING ON THE HEAT
The press conference was organized by Robin Webb and Shannon Reaze, AAIM founders and staffers of HW's new office in Jackson, which aims to help galvanize HIV/AIDS activism in Mississippi. Mary Troupe, executive director of Mississippi's Coalition for Citizens with Disabilities, also played a key role in the organizing, as did the Mississippi branch of AARP.
Because the conference announcing the suit was hastily organized after two weeks of negotiations between the state's attorney general and the governor's office reached a stalemate, no plaintiffs could make it to the press conference, said Webb. Still, he said, the conference was lively. Now, he said, until the case was decided, AAIM's job was to "keep the buzz alive in the community and the media."
AIDS Issues Update will keep you posted.
December 9, 2005
MEMORY AND MOMENTUM
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TELL THE WORLD: HWers and friends chant on City Hall steps during 24-hour vigil |
Nathaniel Adams. Sammy Adorn. Gladys Algarin. Maria Aviles.
So began the names, as the clock struck midnight on Thursday, December 1—World AIDS Day—at the bitterly cold southern tip of New York's City Hall Park. For the twelfth year in a row, Housing Works (HW) had organized the 24-hour, non-stop vigil during which agency staffers, invited guests and impromptu passersby stood at five podiums and read from a half-dozen lovingly kept books containing over 100,000 names of those lost to HIV/AIDS.
"The names come from all over," explained terri smith-caronia, head of New York City advocacy for HW and the main organizer of the event since it began in 1994 to protest the indifference (at best) toward the AIDS community of the then-new Giuliani administration. Since then, the tone of the vigil has softened a bit, its target broadening from the mayor's office to the city (and world) at large, but the names keep on coming. "People send them in from all over the city, and all over the world," said smith-caronia, "and we just keep adding them to our books."
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CHILDREN WILL LISTEN: Young people came to read the names. |
For the three dozen or so HWers there at that first stroke of midnight, though, the first hour was often the hardest, as it was filled with the names of the several hundred HW staffers, clients and friends who have died since the agency's founding in 1990. "William Cuevas. Heriberto Cuevos. Alvin Cumberbatch," read HW cofounder and CEO Rev. Charles King, who symbolically begins and ends each year's reading of the names.
The solemn crowd, many within it quietly crying for memories of lost friends and colleagues, held its breath. King was coming up on the name of HIV-positive HW cofounder (and his former life partner) Keith D. Cylar, who died in April 2004. "Last year—the first vigil after Keith's death—Charles broke down when he came to his name, and we all cried with him," murmured smith-caronia.
"Keith D. Cylar," read King stoically. "Loxie Daley. Timothy Damon." Only then did his voice break—briefly—before continuing with the roster. The crowd exhaled in collective relief, and the reading of the names continued on deep into the night until dawn, when the desolate park slowly came alive again. But amid the growing morning bustle—and all day long, then again into the night—the reading of the names didn't stop.
DAY TO REMEMBER
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SOLEMN ROSTER: Listeners meditated (and many wept) as names were read. |
In the whirlwind, end-AIDS-now (or, preferably, last week) world of HW, the Reading of the Names may be the closest that the bustling, hydra-headed agency comes all year to a symbolic collective stand-still, 24 hours devoted almost entirely to honoring the memory and worth of those lost to the epidemic. And every HWer who stood vigil to read names for shifts of two or four hours was remembering someone in particular they'd lost to the disease.
For Olivia Brown-Dawson, an HW communications staffer living with HIV, it was her three sisters Kathryn Hawkins, Gail Yancy and Cynthia Yancy, and her brother, Bruce Hawkins, all of whom have died of AIDS. "It's emotional for me tonight," she said, bundled up in the cold, "but I'm glad I'm alive to represent them." For HIV-positive transgendered HW staffers Barbara Cassis and Arlene Hoffman, it was late transgendered activists Lori Mills and Sylvia Rivera. "Why did they die and we live?" asked Hoffman. "That's why it's so important for us survivors to keep doing AIDS activism."
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FULL CIRCLE: HW leader Charles King began and ended the vigil. |
Much, much later that day—at about 3pm, when HWers and friends rallied to sing and chant anti-AIDS slogans on the nearby steps of City Hall—New York City Councilwoman Letitia James (who represents the HIV/AIDS-impacted neighborhood of Fort Greene, Brooklyn) said that she had shown up to honor the memory of "friends, family and community activists" lost to the disease. Patrick McGovern said he was thinking of the late Willis Green, Jr., his predecessor as executive director of Harlem United. And a bit later, back at the Reading of the Names, where dusk was falling, Susan Enahoro, MD, medical director of HW's facility in East New York, Brooklyn, said she was thinking about the 20 or so patients she had lost to HIV/AIDS since coming to the job four years ago. "There was no need for some of them to die," she said. "They gave up thinking there was no reason to carry on."
A number of dignitaries showed up through the course of the day to read from the Books of Names, including outgoing City Council speaker Gifford Miller, public advocate Betsy Gotbaum, the mayor's representative in D.C., Bob Nickerson, and Housing Works board member Rev. Errol Harvey. Especially moving was the annual arrival of several dozen 10-year-olds from the Upper West Side's Goddard Riverside after-school program. Asked why her group had shown up, Jamyla Miranda, 10, said simply, "To read the names of people that died of AIDS." Added Goddard staffer Alexander Allen: "People in our community are affected by HIV/AIDS, and these children know who they are, because they're family and friends."
During business hours, countless workers streamed through City Hall Park, some seemingly oblivious to the intent behind the constant cacophony of names emanating from loudspeakers. But many others stopped to listen—and ponder—as did Derrick Henry, 36, an MTA bus driver who lives in Mansfield Township, New Jersey, where, he said, a man in his church congregation had died of AIDS. "It's sad," he said, listening to the endless stream of names. "It makes me realize just how many people have died."
DAY OF ACTION, TOO
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SPREADING THE WORD: In Miss., Robin Webb (back to camera) initiates newcomers to C2EA on World AIDS Day (photo: Thabi Moyo) |
But this year's HW vigil was also the first to incorporate the Campaign to End AIDS, the nationwide movement that HW has put so much time, effort and money behind in 2005. Fittingly, C2EA signs dotted the vigil area, and C2EA's mission of pressuring world leaders to do more to bring the epidemic to an end was incorporated into this moving statement that was read in both English and Spanish at the top of every hour.
Elsewhere, HW observed World AIDS day with an activism-oriented C2EA twist. In Jackson, Mississippi, where HW has embarked on a C2EA-guided partnership with the new group AIDS Action in Mississippi (AAIM), AAIM founders (and HW's new southern staffers) Robin Webb and Shannon Reaze led a state health-department sponsored session that linked the federal government's preferred "prevention for positives" message to the more policy-oriented demands of C2EA. The two talked up C2EA to about 40 people, many of them nursing students who "had never heard HIV coming from a political perspective," noted Reaze.
[The next day, Webb and Reaze led a statewide conference call of about 18 people focused on making Mississippi the first fully organized state within the Campaign to End AIDS. "We're going to make stigma and discrimination one of our front-burner issues," noted Reaze, adding that elections for C2EA state offices will take place next week, shortly before AAIM hosts an open house/Christmas party in its new downtown Jackson digs—and even as it attracts new members like Jackson middle-school teacher Donovan Scott, 28, who says he wants to be AAIM/C2EA's prevention liaison to the schools. "I want to try to get literature in there," he says. "We have 12- and 13-year-old students having sex—and having kids."]
Meanwhile on World AIDS Day, Larry Bryant, HW's new national organizer in Washington, spoke to eighth-graders in nearby Alexandria, Virginia, shocking them when he disclosed that he had been HIV-positive for two decades. And HW top dog King left the New York vigil for a few hours that day to speak at an event in Delaware, a state that orgnanized itself well for the C2EA caravan that came through the state early last month en route to Washington, D.C.
But King was back at the vigil by 11pm that night, when the final hour of the vigil was again devoted to the names of those within the Housing Works family lost to AIDS. As dried leaves danced in the frigid midnight wind, five readers eventually dwindled to one, King, who recited the final names: "Shannon Wilson. Edward Wrighton. Joseph Wydner."
"We will end AIDS," King had said, away from the mic, a few moments before. "Probably not by next year's World AIDS Day vigil, or even in five years. We'll end it, though. But even when we do, we'll still gather here to read the names."
Back at the podium: "Joan Young. Yolando Zeno. Maria Zinberg." Like playful spirits, the last names danced away into the cold night air.
December 1, 2005
"DA 'SSIPP" FIGHTS BACK
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HELL ON WHEELS: Dorothy Bishop speaks up at Tuesday's protest (photo: Thabi Moyo) |
For all you damn Yankees out there, "da 'ssipp" is home-state slang for Mississippi, where 30-odd folks gathered Tuesday afternoon in the capital of Jackson in front of the governor's mansion. They were there to hold the latest protest against a budget-trimming state policy initiated in July that restricts Medicaid recipients to five medications, with only two of them brand-name—and with no exemptions even if doctors demand that certain drugs are needed.
In a press release announcing the protest, participant Mary Troupe, executive director of Mississippi's Coalition for Citizens with Disabilities, said, "This policy is going to force many Medicaid recipients into hospitals and nursing homes, the only places they can get all the drugs they need. That will cost the state far more than if these patients had had adequate treatment in the first place."
Joining Troupe at the protest was Dorothy Bishop, an elderly, wheelchair-bound Medicaid recipient who famously protested the policy this summer by lying in her daybed in front of the state capitol, and K.C. Williams, who said that the drug limits were hurting her 29-year-old brother, who needs eight prescriptions a month after suffering a serious brain injury.
The severe policy has earned the criticism of an unusually strong coalition of local and national groups—including AARP Foundation, the National Health Law Program, the National Senior Citizens Law Center and Housing Works (read more on the HW/Mississippi connection in the story below). Advocates from these groups remain hopeful that they can pressure Mississippi Governor Haley Barbour and the state legislature to amend the policy (by, for example, bowing to a doctor's confirmation that a drug(s) is medically necessary), but the possibility of a lawsuit challenging the policy remains.