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May 18, 2007
DESPERATE MEASURES
by David Thorpe
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Puerto Rico's Colon. "I'm going to succeed," he says. |
On Monday, May 14, Puerto Rican AIDS activist José Colon announced that he would stop taking his HIV meds until Puerto Rico's AIDS Drugs Assistance Program waiting list was "totally eliminated." What made Colon — who claims he will let himself die, if necessary, to end the wait list — take such a drastic step? "Desperation and faith," he says.
As previously reported in the Update, the Puerto Rican government's mismanagement of its Ryan White funds has led to an AIDS emergency of catastrophic proportions. According to the National Minority AIDS Coalition and the Latino Commission on AIDS, San Juan's 20 community-based AIDS organizations haven't received government funds for more than year, forcing layoffs and shutdowns. The confusion and uncertainty surrounding the country's AIDS Drugs Assistance Program (ADAP) is perhaps the most dramatic illustration of the crisis.
ADAP is a joint federal and state program that helps low-income, uninsured or underinsured people with HIV afford costly lifesaving AIDS meds. While Puerto Rico's Department of Health (DOH) has acknowledged to Colon that 36 people are waiting for ADAP enrollment, the island's AIDS advocates estimate that the number is closer to 130 — and say that the real number is simply unknown. The DOH originally denied there was a waiting list, then later told the community-based organizations they shouldn't attempt to enroll clients in ADAP. There is some indication that only approximately 80 out of some 1,500 ADAP applicants have been enrolled. "We don't even know what the protocol is for how they determine who is on the wait list. That should be public information. It's like we're blindfolded," says Colon....
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A FOOT IN THE DOOR
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ETHA pilot possible, ETHA itself coming through |
It's not much by itself, but it's getting the ball rolling.
That's what HIV treatment access advocates were saying about the inclusion of a pilot Early Treatment for HIV Act (ETHA) initiative in the Congressional Budget resolution agreed upon this week.
Congress agreed to aim for $954 billion in new discretionary spending as part of the resolution — and $500 million of that could be an ETHA pilot that would allow a handful of states to apply for funding to extend Medicaid to poor people with HIV before they are diagnosed with AIDS.
Inclusion means there's room for Congress to consider the ETHA pilot — along with trillions in other competing priorities — during the appropriations process this summer....
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HANDS ACROSS...STUY TOWN?
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Come surround this on May 23. |
Folks who care about preserving and expanding affordable housing in New York City — including housing for low-income people with HIV/AIDS — are gathering for a unique demonstration next Wednesday, May 23. "We're going to join hands around Stuyvesant Town and completely encircle it as a symbol of the loss of thousands of units of affordable housing," explains New York City AIDS Housing Network's Jennifer Flynn, who is helping organize the event.
The ring around Stuyvesant Town, the 12,000-unit middle-income housing complex that was an emblem of affordable housing until it was recently sold for $5.4 billion, is the brainchild of a new campaign called New York is Our Home, coordinated by Housing Here and Now (HHN) , a coalition of some 150 housing advocacy organizations dedicated to keeping New York City's never-ending real estate boom from eradicating the rapidly disappearing supply of affordable housing.
The Stuy Town demo and, afterwards, a march to Union Square, are meant to call attention to New York is Our Home's five major demands: repealing rent destabilization; preserving Mitchell-Lama and Section 8 housing; stopping unfair rent increases and harassment; ensuring adequate state funding for New York City Housing Authority housing; and capping rental payments for low-income people living with HIV/AIDS at 30 percent of their income....
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YOUNG AND RESTLESS?
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Delaware's stand-out AIDS activist Gibson |
Lolisa Gibson is only 20, but she's already comfortable standing in front of big groups of high school kids and explaining how safe sex can reduce their risk of getting HIV. It's the adults she has issues with. "The challenge is getting the schools to let us in!," she says. "Once we get in, it's easy to get the student's attention."
One reason Gibson, who works as an HIV prevention specialist at Brandywine Counseling in Wilmington, Delaware, is so self-assured and so savvy about HIV is that she attended last year's Youth Action Institute (YAI) in summer 2006. YAI is an annual youth activist training sponsored by the Campaign to End Aids (C2EA) where young people age 16 to 26 learn how to become fierce AIDS advocates and activists — like Gibson, who is coming back to help run YAI in 2007. "There's so much to learn and so many folks to meet. It's a great experience," Gibson says. There are still slots available for this summer's five-day training in Raleigh, North Carolina, which runs from July 4 to July 8. The deadline to apply has been extended to June 1....
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ACT UP GOES UNIVERSAL
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It's time to stop the health care bull. |
When ACT UP celebrated its 20th anniversary this March, it wasn't just looking backward. In addition to joining forces with the HASA for All campaign that seeks to expand benefits for poor New Yorkers with HIV, ACT UP vowed to make universal health care one of the top priorities in the 2008 presidential elections. Stepping into the universal health care debate has helped give the legendary-but-struggling direct action group a much-needed bounce. Attendance at meetings has nearly tripled, and the first gathering of its "No More Bull: Healthcare for All" committee, which will lead its efforts on universal health care, attracted representatives of numerous community-based organizations, including Housing Works, Gay Men's Health Crisis (GMHC), Physicians for a National Health Plan (PNHP), Healthcare Now (HN) and Metro New York Health Care for All....
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BREAKING DOWN BARRIERS
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WTF? It's time for a change, New York! |
Access to the ballot booth is an essential component of democracy — and New York is blatantly out of compliance with the federal Help America Vote Act and Americans with Disabilities Act when it comes to polling place access and related provisions.
Based on lawsuits, affidavits, complaints, and information documented from Primary and Election Days 2006, New Yorkers with disabilities and seniors still face numerous barriers to exercising their basic right to vote.
The New York State Independent Living Council is sponsoring a cross-disability summit on voting access and electoral issues on June 4 in Albany, at the Desmon d Hotel on Albany Shaker Rd., from 8:30am to 4pm. For full information contact Susan Cohen at suec@nysilc.org or 518-427-1060 x6. ...
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