ABAC chairperson Rivera

In the face of more budget cuts by New York City next week and New York State after the election, AIDS advocates are uniting in plans to fight back and remind government officials that the rise in new HIV infections won't drop just because the stock market does.

"These cuts are going to have some serious consequences on real people's lives," said Manuel Rivera, president of the PWA-driven AIDS Budget Action Coalition. "Our elected officials need to know people with AIDS aren't going to be helpless bystanders as new infections rise and lifesaving support services are cut."

Mayor Michael Bloomberg has asked his deputies to trim the budget 2.5 percent for the rest of the fiscal 2008-09 year, and five percent for the following year by Wednesday, October 8. Deputy Mayor for Health and Human Services Linda Gibbs is in charge of the health budget, and will decide what is on the chopping block. The new danger for AIDS services comes on the heels of devastating cuts in June, including $6 million in cuts to AIDS services, including syringe exchange, testing and prevention last June. In Albany, Gov. David Paterson is cowardly holding off until after the elections to swing his budget axe, and is expected to try to add to the August state budget cuts come November.

Harlem United Deputy Director of Policy and Government Relations Soraya Elcock says that new cuts could jeapordize New York’s AIDS services network. Harlem United has already absorbed a $20,000 cut to its a syringe exchange program.

"The state and the city have been pretty thoughtful about trying to minimize the impact so far," Elcock said. "But particularly looking at the data of Latino and black men who have sex with men, future cuts are going to be counter-productive."

Hold harmless

Tracie Gardner, director of state policy at the Legal Action Center said that, like education, HIV/AIDS prevention funding is something that should be held harmless during budget cuts. "

Specifically with HIV prevention, we've been operating on a deficit all along, and have never had the resources to meet the need," she said. "Regardless of the economic situation, people will continue to be at risk, and there are certain things that have to be held harmless. We don't cut schooling, and we can't cut elements of public health. It's a classic situation of penny-wise and pound foolish."

However, Gardner said it is important that HIV/AIDS not be treated as a political issues—including within the AIDS community. "We need to make sure that effective services and programs are funded, while eliminating wasteful spending in our own community as well. There are certain community programs that are considered politically untouchable and we need to be able to point out that politics has no place in this."

Housing Works Vice President of New York Advocacy and Public Policy terri smith-caronia said advocates should treat the city's budget decisions like policy decisions. "We have to let our elected officials know that when they don't back their philosophical support for a program with funding dollars, it is just as harmful as being opposed to it."

September 18, 2008

RYAN WHITE 'CARE COORDINATION' RAISES EYEBROWS

Something's not quite right about the new DOH plan... flickr.com/photos/suzannelong/286406542/

At the last New York City Ryan White planning council meeting in July before the new members take over, the council voted that Ryan White dollars can be used for "HIV Care Coordination," a new initiative intended to reach approximately 4,000 New York City residents living with AIDS who are not accessing AIDS care and services. The new plan sounded like a good idea in theory. But when the full details were revealed at an open meeting last week, advocates were outraged.

The proposed plan would shut out many small community-based organizations in favor of large hospitals. In addition, the plan duplicates services already covered by COBRA case management. Since COBRA services are covered by Medicaid, using Ryan White money possibly violates the federal mandate that Ryan White is the "payer of last resort" and wastes Ryan White dollars on services that are already covered by Medicaid.

The New York City Department of Health (DOH) said the Care Coordination plan would cover people not covered by Medicaid. It has already identified 4,714 people that lapsed out of care since 2005, and hopes this new program will bring them into care. The NYC DOH hasn't identified a budget, but advocates estimate the plan will cost $18 million in Ryan White Part A dollars. The NYC DOH has already created an RFP for hospitals and CBOs and is well on its way to implementing the system.

According to the NYC DOH, the Care Coordination is defined as the following:

Reinventing the wheel?

Unlike with COBRA, case managers in the Care Coordination plan won't have to be linked to community-based organizations and can operate out of hospitals. The focus on hospitals for providing case management scares a Designated AIDS Care Center administrator at a major New York hospital. "Community-based organizations have access to the communities in a way hospitals don't," said the source, who wished to remain anonymous since his hospital would benefit from the new plan. "It's flawed in so many aspects. I see more hindrances in care coordination. As a hospital provider I can probably only afford to work with one CBO, because I can't let an employee from another agency have access to my client files. But we have clients who live in the five boroughs. The primary focus for case management should be for CBOs, the way it is with COBRA. "

With the exception of "medical adherence" the services Care Coordination provides is almost identical to COBRA case management. "Why don't we just add an add-on to COBRA for Ryan White to pay for this instead of duplicating the entire system?" asked Matthew Lesieur, director of public policy for Village Care of New York/National Association of People With AIDS.

The DOH claims that the new care coordination targets people not connected to care. However, unless these people are not eligible for Medicaid (for example, undocumented immigrants or people with too high of an income to qualify for Medicaid), Lesieur is skeptical that this new system will solve the problem of getting people into care.

"If all these thousands of people not in care are undocumented immigrants than maybe it's a good model," Lesieur said. "But if these people not connected to care are already eligible for Medicaid and need more aggressive efforts to get them in, copying an existing system isn't going to get them into care."

Dr. Fabienne Laroque, NYC DOH director of care, treatment and housing, said at the meeting that the NYC DOH has been working with the New York State AIDS Institute to coordinate any overlap, but sources say the AIDS Institute said it was unaware of the new regulations. Laroque also made clear that this program was only intended for the 4,174 people identified as needing care, not those who qualify for Medicaid. Laroque also said that hospitals wouldn't be required to partner with CBOs, but added it would be beneficial for them to do so.

A spokesperson for the DOH wouldn't address questions relating to Medicaid, but said, "With the advent of antiretroviral therapy, HIV/AIDS has increasingly become a chronic disease requiring long-term management. We need to use the best methods and resources to help more people stay healthy, and prevent early deaths—particularly for those people living with HIV/AIDS with unstable housing, mental illness, and problems with drug or alcohol addiction."

The New York State AIDS Institute's conservative estimate is that 51,000 people with AIDS in New York City are on Medicaid. More than 100,000 people in the City have HIV/AIDS, but many do not know their status.

August 28, 2008

UP, UP, UP

At the ABAC rally: Even kids know...funding cuts won't end the epidemic

On Wednesday the New York City Department of Health released updated numbers using CDC's methodology that showed HIV incidence rates are higher than previously believed. In 2006, 72 of every 100,000 of New Yorkers were newly infected in 2006, compared to 23 per 100,000 nationally. Half of these infections were among men who have sex with men. Forty-six percent were among African-Americans and 33 percent were Latino.

Assistant Commissioner for the Bureau of HIV/AIDS Prevention and Control Dr. Monica Sweeney said in a release that these numbers "shows who is getting infected now and where we need to direct resources for prevention, testing, linkage to care, and partner notification." In actuality the city and state decreased funding for AIDS prevention and testing this year.

Advocates who hadn't already left for the holiday weekend were outraged but not surprised by the new numbers, which don't signify a rise in new infections, but rather newly reported infections.

"The high incidence numbers are a direct result of programs and policies in New York City that inadequately meet the sexual health needs of gay and bisexual men of color," said Coco Jervis, director of policy for the Community HIV/AIDS Mobilization Project. "New York City and State officials continue to drastically cut already under-funded HIV prevention, education and supportive services around the city, and the communities being hit the hardest are the very ones that are already severely underserved and most vulnerable HIV."

New York City AIDS Housing Network member Robert Jones agreed. "I haven't seen much outreach in the neighborhoods where it's most needed," he said.

Harlem United Deputy Director for Policy and Government Affairs Soraya Elcock said, "It's not enough for the AIDS community to be outraged—the city and the state needs to be as well. They are the ones who have access to the billboards, they're the ones with the resources to reach people, particularly African-Americans and gay men who are most affected."

Housing Works President and CEO Charles King said, "New York legislators including Mayor Bloomberg, Council Speaker Quinn and Governor Paterson are talking out of both sides of their mouths. On the one hand they say they want to test more people with HIV while on the other hand they are cutting testing and other resources that will keep people alive. They need to get real about what it will take to end the AIDS epidemic in New York, particularly among poor people, people of color and men who have sex with men. Until then, New York legislators are going to continue to be embarrassed by reports like the one the Department of Health released today,"

New York City's AIDS organization have begun a spirited fight to push back against government neglect of AIDS services. Two weeks ago, the newly formed AIDS Budget Action Coalition, the brainchild of New Yorkers living with HIV/AIDS, gathered some 150 people representing dozens of the city's AIDS groups for a protest outside of Gov. Paterson's Manhattan office.

Last week the CDC announced that it will be cutting funding for eight states and Puerto Rico for future monitoring using the advanced tracking HIV system. While the CDC doesn't expect this to hurt the accuracy of the overall U.S. numbers, it's a blow to jurisdictions that need the accurate incidence data for their own planning and purposes. In Puerto Rico, tracking numbers are especially abysmal, and the cuts will only make it worse. CHAMP board member Walt Senterfitt said that other "noteworthy losses" are Maryland, since Baltimore is one of the remaining IDU centers of the epidemic, as well as Georgia and Pennsylvania.

But the larger issue is that CDC funding has actually decreased over this decade. Advocates are asking for an additional $1.3 billion in funding.

"The big story is the same as for other particular issues: Rollback the cutbacks!," Senterfitt said. "Expand the shrinking pie to meet the real human needs. To quote Barack Obama in thanking Bill Clinton on Wednesday: 'Put people first!'"

NASTAD executive director Julie Scofield said that because funding allocation is based on the AIDS surveillance system, it's essential that it be stellar.

"In some ways HIV/AIDS surveillance is really the Cadillac of surveillance systems. But it has to be, because of the way we use it," she said. "As long as Ryan White funding depends on surveillance numbers, we're really letting it slide,"

July 3, 2008

BAD, BAD BUDGET

Quinn and Bloomberg justify their budget as Council looks on

Last Sunday—LGBT Pride Day in New York City—Mayor Michael Bloomberg and City Council Speaker Christine Quinn shook hands and kissed on a 2009 city budget that included $6 million in heinous cuts to HIV/AIDS programs. Even though there was a budget surplus, the mayor wanted to save for a rainy day—and protect an unnecessary "tourist tax." Bloomberg demanded harsh cuts, pitting poor against poor, while the council spun his demands as a "victory" because in the end education funding was spared at the expense of social services. For a full budget breakdown of the HIV/AIDS reductions click here.

Budget meetings were highly secretive and many councilmembers were cut out of the budget process—so much for Quinn’s vaunted transparency. In the end, funding for services for people with living HIV/AIDS and harm reduction programs were decimated. Money for HIV/AIDS counseling programs and a pilot program set up last year to get HIV-positive people out of shelters and into stable housing was completely eliminated, an inauspicious move in Bloomberg's five-year plan to end homelessness.

The Injection Drug Users Health Alliance (IDUHA) Harm Reduction funding was cut by almost $750,000, or 30 percent. HIV rapid testing services received a $1 million cut, a particularly galling reduction given the NYC Department of Health's effort to expand testing, including the recently announced plan to test every adult in the Bronx.

Advocates at press conference denouncing budget cuts

A broad coalition of activists held a last-ditch post-Pride press conference decrying the cuts—after which a dozen members of the New York City AIDS Housing Network (NYCAHN) and Voices of Community Advocates and Leaders (VOCAL) were kicked out of City Hall, shouting, "Hey, hey! No, no! This bogus budget has got to go!". But the budget still passed 49 to 1, with only Councilmember Charles Barron dissenting. Barron had the guts to show the public exactly what was and wasn't cut. The rest of Council failed to protect its most vulnerable constituents.

"We have to be realistic"

Councilmember Oliver Koppell told the Update that if the city's financial picture improves later in the year some of the cuts can be restored, but "right now things don't look so good." He also said that the mayor has used billions in surplus revenues to anticipate a shortfall in 2010, and if just $100 million of that had been spent this year, social service programs could have been saved. "If the Council had the cooperation of the mayor, we could have done differently," he said. "It was a budget that did some important things. We in the Council did what we felt had to be done, including restoration of the classroom cuts, restoration of libraries, moneys, and a partial restoration of what a mayor had cut."

Barron tells it like it is

Advocates say politics got in the way of sound health policy. "The city is cannibalizing itself for body politick to close a gap," said Joyce Rivera, founder and executive director of the St. Ann's Corner of Harm Reduction, which receives funding through IDUHA. "Prevention works, and I don't follow the logic destroying a program that has proven effective the last 18 years."

Just two weeks ago, Rivera took part in a rally sponsored by IDUHA praising City Council for its support of harm reduction. Thanks to Council funding, between September 2007 and April 2008, IDUHA members have distributed 94,441 sterile syringes, educated 5,494 New Yorkers about Hepatitis C and 9,652 about the opioid treatment buprenorphine, and trained 8,057 individuals on reversing drug overdoses. The Update even reported, "Despite the uncertain funding climate, rally organizers are optimistic that, with the support of [Annabel] Palma and Koppell, IDUHA's funding will be renewed." Despite Palma and Koppell’s staunch support of IDUHA, the funding still took a partial hit

Palma told the Update this week that she and Koppell don't serve on the budget negotiation team and didn't have a say in the final budget. "While I understand that many of my colleagues do support IDUHA, one of the biggest worries facing the Council in fiscal year '09 was to makes sure that we all kept our promises that we would not support a budget with cuts to our classrooms," Palma said. "Despite my disappointment with some aspects of the budget, it would have been irresponsible for me to vote against the budget. We wish we lived in a Utopian society [but] we have to be realistic about such cuts in any given year."

Such rationales don't convince everyone. "These very City Council members voted for the budget cuts after being supportive of these efforts," said VOCAL coordinator Louie Jones. "It's going to be slim and tight but hopefully we will still be able to respond to a need in this most marginalized population."

June 20, 2008

JUDITH VERDINO

Judith Verdino, a dedicated and respected veteran of New York City's AIDS community, died last Friday from complications from breast cancer.

Verdino worked at Public Health Solutions (formerly the Medical and Health Research Association of New York City) for 14 years. As the organization's vice president for special initiatives and H.I.V. programs, Verdino played an integral role in determining how millions in Ryan White, New York City and Centers for Disease Control funds were distributed.

"Judi always cared about making sure that the process worked for people," said Community Resource Exchange's Barbara Turk, who performed a commitment ceremony between Verdino and her partner, Imani Romney-Rosa in 2007. "She had worked at [the LGBT nonprofit] Hetrick-Martin and that informed her understanding of challenges that both people living with HIV and nonprofits face."

Public Health Solution's President and CEO Ellen Rautenberg said, "Judy was passionate about developing networks of care. She could thread the needle between government, nonprofits and people living with HIV. She used her sense of humor and astuteness to do that, and people respected her passion and energy. And it was never about Judy. You can't always say that. She put the epidemic and people living with HIV first."

Verdino is survived by her daughter, Genna Verdino-Ellis, her brother and sister, Christopher and Joanne Verdino, her nieces Codi and Kasey Ng, and her wife, Imani Romney-Rosa.

USE YOUR DISCRETION

Rivera (far left) fires up the crowd as Palma (far right) looks on.

"We're committed to this issue…we're not going to give up the fight!"

Those were welcome words from Bronx City Council Member Annabel Palma to dozens of AIDS and harm reduction advocates that gathered on the steps of City Hall on Monday afternoon. Members and supporters of the Injection Drug Users Health Alliance rallied for half an hour to remind City Council Members of the lifesaving HIV prevention and harm reduction services that they provide and thank the Council for its past support.

IDUHA is a $3.3 million discretionary initiative, and the recent scandal over Council Member items has thrown discretionary funding into uncertainty. There is no guarantee that discretionary programs will get renewed and none are expected to see enhancements.

Programs funded by IDUHA provide vital services to New Yorkers, including syringe exchange, HIV and HCV prevention education for communities of color and drug users, and education about methadone-alternative buprenorphine and overdose prevention. B etween September 2007 and April 2008, IDUHA members distributed 94,441 sterile syringes; educated 5,494 New Yorkers about Hepatitis C and 9,652 about the opioid treatment buprenorphine, and trained 8,057 individuals on reversing drug overdoses.

Koppell keeps on

Palma's Bronx colleague, Council Member Oliver Koppell, also spoke at Monday's rally. "Ending addiction is a process. While that process is going on, we want to prevent people from getting AIDS," Koppell said to applause. He added, "We need to do more to promote buprenorphine, and we've been pushing the [mayor's] administration on that."

Koppell and several other speakers thanked the Council for its past support of HIV-prevention among drug users. Rally organizers say that since 1993, the number of new AIDS diagnoses among injection drug users has dropped 90 percent, partly due to the availability of syringe exchanges.

"The essential services supported by the City have improved the quality of my life and provided a critical lifeline for me as a drug user who has been living with HIV and Hepatitis C since 1986," said Louie Jones, Voices of Community Advocates and Leaders (VOCAL) Coordinator. "Restoring funding is a crucial step toward creating a healthier New York and ensuring no one is denied care and services that will keep them and their families safe."

Looking good

Despite the uncertain funding climate, rally organizers are optimistic that, with the support of Palma and Koppell, IDUHA's funding will be renewed. "We have a history of doing a good job, and we've been in the budget before. We're a solid group and our funding shouldn't be up for questions," Jeremy Saunders of the New York City AIDS Housing Network (NYCAHN) and VOCAL, said.

Joyce Rivera, the pioneering executive director of St. Ann's Corner of Harm Reduction (SACHR) added, "We're cautiously optimistic that we will retain funding at current levels, minimum. I understand from several sources that our funding line isn't threatened because the Health Committee is happy with our initiative and its results. And Palma and Koppell are championing our results and the ask." Rivera is one of the longest continuously serving heads of a harm reduction organization in the country.

IDUHA has 18 coalition members. Also in attendance on Monday were CitiWide Harm Reduction, Lower East Side Harm Reduction, Housing Works, Syringe Exchange Project, Positive Health Project, Street Works, Community Health Action of Staten Island, Harm Reduction Coalition, NYCAHN, New York Harm Reduction Educators, After Hours and other groups.

June 13, 2008

FRIEDEN POWER GRAB AVERTED

Planning Council cochairs Jan Carl Park and Soraya Elcock

At the Ryan White Planning Council of New York's Executive Committee meeting on Tuesday, Council members rejected proposed changes to Planning Council bylaws that would have increased the Department of Health and Mental Hygiene's (DOHMH) voting power. The changes would also have had a potentially disruptive effect on the Council's Congressionally mandated power to make binding decisions about Ryan White funds.

The Executive Committee rejected changes proposed by the Council's rules and membership committee, which had voted 3-2 to amend the existing Council bylaws to add two DOHMH members to the 40 person council and add the phrase "in concert with the New York City Department of Health and Mental Hygiene" to key parts of the bylaws. To see the proposed changes to the bylaws, click here.

Committee members argued the DOHMH, which already has one Council vote, was attempting to upset the balance of power of a body that is supposed to be a consortium of consumers, providers and government officials. All eligible metropolitan areas that receive Ryan White funds have planning councils responsible for allocating and distributing Ryan White dollars. One-third of members are required to be people with HIV/AIDS.

"The reason Congress set planning councils up this way was so the government officials are not making decisions by themselves," said Matt Lesieur, chair of the Planning Council Policy Committee. "Adding two DOH members to the Council would mean there are 10 government representatives on Council." Lesieur, who previously worked for the DOHMH providing staff support to the Planning Council added, "Just as GMHC, for example, wouldn't be allowed three voting members, the DOH shouldn't have this voting bloc."

Priority Setting and Resource Allocation Committee co-chair Eli Camhi agreed. "Collaboration is vital, but this blurs boundaries. You want to maintain the credibility of the council," Camhi said, also noting DOHMH already shapes the agenda behind the scenes. "The origin of these recommendations didn't come from the Council. They came from the city," he said at the Tuesday meeting. No one disputed this claim.

DOHMH getting 'a bit too powerful'?

Dr. Fabienne Laraque, Planning Council member and director of the Office of Surveillance for DOHMH's Tuberculosis Control, was the main defender of the changes at the meeting. She claimed that increasing the DOHMH's participation in the council would add essential expertise to the Council's workings. "Currently members of the Department of Health are providing a lot of duties and support, but can't speak unless they are giving a presentation," she said.

That didn't sit right with the Consumer Committee cochair Felicia Carroll. "DOH is already providing information and is doing an excellent job, but they are getting a bit too powerful," she said.

Edward Telzak, chair of the Finance Committee, added, "It's a fairly productive process now. Fabienne and the staff move the direction of the planning council, and can do that without more voting members. It's working without the Department of Health as the single most dominant force."

Members also worried that while the DOHMH is largely on the same page as the Council the new bylaws could be abused in a less friendly administration. "We're lucky we have a real partnership with the Department of Health but in two years the relationship might not be that way," said Soraya Elcock, the Council's community co-chair.

If you have an opinion about these proposed changes, you should go to the Planning Council meeting on Thursday, June 19 from 3 to 5 p.m. at the New York State AIDS Institute, 90 Church Street, 4th Floor Conference Room, and let your voice be heard during the public comment period. The Rules and Membership Committee will take a second look at its rejected changes at its July meeting. Any changes will have to be approved by the Executive Committee, and then the full Council.

May 30, 2008

CUTS & THE CITY

AIDS cuts from all over the place (photo credit: flickr.com/photos/alsokaizen/2471871893/)

City council members and AIDS advocates were outraged when New York City Department of Health and Mental Hygiene commissioner Thomas Frieden announced $1.3 million in proposed cuts to HIV/AIDS funding in the 2009 executive budget. Announced at Tuesday's testimony before the City Council, this is part of Mayor Bloomberg's recent demand that department trim three percent of its budget, on top of a five percent requested for reduction in January. The DOH is also cutting jobs through attrition, which will cut back on the DOH's services.

"We can't afford to cut funding for HIV/AIDS when we still haven't reached all of the people contracting HIV," council member Letitia James said. New infections among men who have sex with men under age 30 has increased by 33 percent during the past six years in New York City.

The HIV/AIDS cuts—$839,040 from city tax levy, and the rest a result of lost state matching dollars—include slashing the contracts of five community-based organizations that provide anti-stigma and behavioral intervention campaigns. The city will also cancel five of the 27 CBO HIV/AIDS service contracts as DOH evaluates "the types of activities they conduct and the effectiveness of these activities," Frieden said in his testimony. The DOH has not released the names of the CBOs with contracts on the chopping block.

The city will also stop distributing rapid testing kits to Beth Israel, Bronx Lebanon, St. Luke's, New York Presbyterian and SUNY Downstate hospitals. This relatively tiny $13,000 cut undermines the city's campaign to encourage testing. One out of four people with HIV/AIDS in New York City remains undiagnosed. "In light of the fact that the city wants everybody tested, this is an atrocious move," said Housing Works New York City policy analyst terri smith-caronia.

The HIV/AIDS funding slash is part of the three percent across-the-board cuts Mayor Michael Bloomberg recommended to the city, on top of the five percent cuts he asked for in January.

The DOH will make up for the state's two percent budget cuts with city tax levy, but that's little help since the city will still be at a net loss of AIDS dollars, particularly with Ryan White funds slashed in recent years.

And unlike in San Francisco, where Mayor Gavin Newsom nixed a $3 million cut to AIDS care, Bloomberg isn't expected to show the same compassion. According to James, the Council will have to find other revenue in the budget to make up for these cuts for which there's a "constellation of blame" to go around, she said.

"Bloomberg said he recognizes this is a crisis, but we are facing cuts at the federal level, the state level, and the city level," James said. "The Council has to work together with advocates to find the dollars to replace AIDS funding."

The Update will keep you informed of the back-and-forth city budget battle as it unfolds.

SPEAKING UP

Some 50 people with HIV/AIDS, and AIDS service providers gathered at Gay Men's Health Crisis's Chelsea headquarters Tuesday for a "Ryan White Reauthorization Town Hall" to share the problems with AIDS care that they face in New York City.

Tuesday's forum, cosponsored by GMHC and the New York AIDS Coalition, is part of a nationwide series of meetings held in anticipation of the 2009 Ryan White Reauthorization. The last reauthorization's weigh-in, in 2005, was heavy on lobbyists and light on recipients of AIDS services.

This time Senate Health Committee chair Ted Kennedy requested to hear from "real people" to assess what is and isn't working, not just with Ryan White, but with all of the country's HIV/AIDS treatment and services. The first forum was held at NAPWA's 2007 Staying Alive conference in August, and sessions have been held across the country in Columbia, South Carolina, Philadelphia, Chicago and the Bronx. NYAC is planning more town hall meetings in upstate New York and on Long Island. And if you can't make a town hall summit, you can fill out the online survey "Creating New Ryan White Legislation". All comments received at the town halls and online surveys will be compiled and sent to Kennedy's office.

The need for better housing and transportation have been common refrains at every town hall, shaking up the last Ryan White reauthorization's requirement that 75 percent of the funding be spent on "core medical services."

"Many days I don't feel well enough to take the subway, but I still need to go to my doctor's appointments across town," said one participant. "There should be a mandatory transportation allowance."

Another participant agreed that money was tight, noting that because the HIV/AIDS Services Administration rental assistance allowance isn't capped (like all other rental subsidies in the state), most of his social security income (SSI) goes to rent. "I have to live on $11 a day," he said. "Once you pay rent, you can't buy food."

"I'm grateful for the housing, but HASA doesn't require landlords to keep up their apartments. My shower's busted, and I haven't had a shower in the last four days so I apologize to you all for that," said a consumer who was one of the dozens of people with AIDS who spoke at the meeting.

Manny Rivera, the meeting's moderator and chairperson for GMHC's consumer advisory board, noted that issues seemingly unrelated to AIDS, like holding a bad landlord accountable, are important for Kennedy to hear about. "You might say that's not the point, but that is the point," Rivera said. "Sometimes we need to see how everything relates."

Others were concerned that the issues of women and those over 50 aren't being met. "As a woman going through menopause, I want to know the side effects of my medications," said Juanita Chestnut, a peer educator at GMHC.

Providing questions

Providers were also asked how their services have been impacted by the cuts to Ryan White funding in the city. Some were forced to drop treatment adherence programs. "Now hospitals are doing it, but we were out in the community where the people are," said Ken Stewart, a provider with Village Care.

A representative from Bailey House also said that a treatment adherence program got short -shrifted, and a nurse was laid off after the cuts to Ryan White dollars in New York.

The consumers at the meeting agreed that treatment adherence was important. One participant also said that he and many of his peers with AIDS are also infected with hepatitis C and that there should be more treatment adherence programs relating to that.

Missing faces

But despite the vocal consumer and provider input, participants mentioned that the highly engaged crowd wasn't a representative sample of people with HIV/AIDS. Missing in action from the meeting—and from receiving care in general—was anyone under 25. Also missing were the many with HIV who aren't eligible for many of the services people with AIDS are entitled to and aren't even allowed to start taking antiretrovirals under Medicaid or AIDS Drug Assistance Program guidelines. As one participant noted, "You can't even get medication unless you have a higher CD4 count."

May 16, 2008

PREVENTION IN PERIL

Cash alone won't prevent HIV, but the epidemic won't end without it (flickr.com/photos/tracy_olson/61056391/)

With George Bush on the way out and revised (for the worse) national estimates of yearly HIV infections on the way in, calls are coming from all quarters to up funding for HIV prevention and find new ways to stem the AIDS epidemic.

At a Congressional briefing on Monday (aired on C-SPAN), AIDS advocates pushed for the Centers of Disease Control and Prevention (CDC) to double its annual prevention budget to $1.3 billion. Organizations that participated in the briefing, including the National Alliance of State and Territorial AIDS Directors, Gay Men's Health Crisis and the AIDS Institute, tried to connect the dots for Congressional staffers: While the CDC is planning to announce a much-anticipated increase in yearly HIV infections in the U.S., the Bush administration wants to reduce the agency's prevention budget by $1 million.

"We need to keep on highlighting that the CDC funding is going down," said The AIDS Institute's director of federal affairs Carl Schmid. "A lot of the community is focused on Ryan White, and prevention seems to get the shaft."

Just a week ago CDC director Julie Gerberding, speaking at a forum in Oakland, CA admitted, "We have not succeeded in our prevention efforts" and called for more funding and outreach to African Americans, especially men who have sex with men. Last year, Gerberding said that her Bush administration superiors had hamstrung her efforts at the CDC.

Here in New York City, Community HIV/AIDS Mobilization Project (CHAMP) held a forum at the LGBT Community Center in the West Village on Wednesday on the current politics of HIV prevention research. CHAMP executive director Julie Davids said she wants community advocates to increase the pressure on the federal government to make prevention its priority.

Davids said she feels, as CHAMP's slogan "No Magic Bullet" suggests, that there will possibly never be a single cure to the HIV/AIDS epidemic and a solution can only be reached by demanding a comprehensive platform of trials associated with prevention research.

When asked if she thought Gerberding was speaking more freely with Dubya on the way out, Davids said, "She certainly could have spoken about [prevention funding] at any time."

Bush's replacement could be a godsend for prevention activists—or a disaster. Sen. Barack Obama wants to increase federal funds for HIV prevention programs and his AIDS plan calls for ramping up testing in the African American community. Sen. John McCain supports the famously backward abstinence-only-until-marriage approach. Check out the SIECUS prevention fact sheet on both candidates (and Sen. Hillary Clinton).

Startling increases

At the CHAMP forum, guest speaker Monica Ruiz, Ph.D. from the Foundation for AIDS Research presented an overview of how federal money is spent, noting that only four percent of the federal AIDS budget was allocated to prevention research in 2006. Another problem Ruiz notes is the correlation between the leveling off of federal funding in the President's Budget since 2004 and the rising cost of research due to inflation. "They have not taken into account the dollar's purchasing power," Ruiz said. She estimates the purchasing power of the dollar to have decreased 12 percent since 2004.

Beryl Koblin, Ph.D. from the Laboratory of Infectious Disease Prevention gave a synopsis of recent research findings on HIV infection rates in New York City. Koblin explained that even though the overall rate of HIV infection in New York City has steadily decreased over the last five years, there has been a startling increase in transmissions among men who have sex with men and heterosexual women. Men who have sex with men with known risk make up more than 75 percent of new HIV diagnosis, and the diagnosis rate is approximately four times higher in blacks than it is in whites.

Following hot on the heels of all this prevention talk is Sunday, May 18's HIV Vaccine Awareness Day, created to redouble worldwide efforts to find a cure for AIDS. The recent failure of the Merck vaccine (MrkAd5), which did not reduce the risk of contracting HIV or reduce the viral load among those who became infected, has cast a pall over those efforts.

May 9, 2008

May 2, 2008

April 18, 2008

March 28, 2008

March 14, 2008

March 7, 2008

February 22, 2008

February 15, 2008

February 8, 2008

February 1, 2008

January 18, 2008

December 7, 2007

November 9, 2007

October 19, 2007

October 5, 2007

September 28, 2007

September 21, 2007

September 14, 2007

September 7, 2007

August 30, 2007

August 17, 2007

July 27, 2007

July 20, 2007

July 13, 2007

June 29, 2007

June 22, 2007

June 8, 2007

June 7, 2007

June 1, 2007

May 25, 2007

May 18, 2007

May 11, 2007

May 4, 2007

April 26, 2007

April 13, 2007

April 6, 2007

March 30, 2007

March 9, 2007

March 2, 2007

February 23, 2007

February 16, 2007

February 9, 2007

February 2, 2007

January 26, 2007

January 19, 2007

December 26, 2006

December 8, 2006

December 1, 2006

November 10, 2006

November 3, 2006

October 27, 2006

October 20, 2006

October 13, 2006

October 6, 2006

September 29, 2006

September 21, 2006

September 14, 2006

March 2, 2006

January 26, 2006

January 20, 2006

January 13, 2006

January 5, 2006

December 22, 2005

December 16, 2005

December 9, 2005

December 1, 2005

November 22, 2005

November 17, 2005

October 27, 2005

October 13, 2005

September 29, 2005

September 23, 2005

September 14, 2005

July 7, 2005

June 29, 2005

June 21, 2005

June 15, 2005

June 7, 2005

May 24, 2005

May 18, 2005

May 3, 2005

April 19, 2005

April 12, 2005

March 30, 2005

March 16, 2005

March 9, 2005

March 1, 2005

February 24, 2005

February 16, 2005

February 8, 2005

February 3, 2005

January 25, 2005

December 9, 2004

November 30, 2004

November 24, 2004

November 16, 2004

November 9, 2004

November 2, 2004

October 26, 2004

October 12, 2004

October 5, 2004

July 7, 2004

June 29, 2004