Last Spring, some New York politicians and advocacy groups began pushing what they call "an initiative to end AIDS," or end new HIV infections, in the state. They are hopeful that Governor Cuomo and Mayor Bill de Blasio will take up the cause.
According to the New York State Department of Health, new diagnoses for HIV fell 37 percent, with diagnoses falling in all risk groups from 2002 to 2010. From 2003 to 2010, there was a 96 percent increase in the annual number of newly reported HIV infections in young men who have sex with men of color, the same report reads.
HIV is still an epidemic in neighborhoods in parts of the Bronx, including Tremont and parts of Claremont, Belmont and Crotona. And, says Daniel Tietz, executive director of AIDS Community Research Initiative of America [ACRIA,], which provides HIV/AIDS education and consulting and studies the needs of at-risk populations, "When only about 40 percent of New Yorkers with HIV are virally suppressed, meaning they are consistently engaged in care and on effective treatment, it is clear we’ve not solved this or ended the epidemic.”
The initiative is a combination of policies, some health-related and some focused on quality of life in general, such as better housing and primary care. It’s what Housing Works CEO Charles King calls a "thatch roof" of a plan because all of the parts are needed in order to strengthen its efficacy.
Housing Works, Treatment Action Group and ACRIA organized engagement with state senators, assembly members, state and city agencies and the governor’s office to gain funding for the AIDS Institute, which recently avoided $40 million in cuts, not to mention talk of closure.
An essential part of the plan is making sure young people of color get access to fourth-generation testing, which simultaneously detects both antigen and antibodies for HIV s and can alert newly infected people much faster.
"There is a big spike in virus in the blood soon after infection, but often before an HIV antibody test would pick-up an infection. This is when folks may pose the greatest risk to others, usually unknowingly," Tietz says. "The typical mouth swab or home test kit is not testing for the virus itself, but rather the body’s antibody response, which may take six to eight weeks after infection to develop. If someone had unprotected sex a few days ago and decided to take an HIV, the current antibody testing couldn’t tell you whether you were infected."
A "30 percent rent cap," or a making sure that New York City residents with HIV/AIDS living in subsidized housing have their rent capped at 30 percent of their income, is also important to the initiative, and one Housing Works has long fought for. The 30 percent rent cap bill passed both houses but stopped at Governor David Paterson’s veto in 2010.
The plan would also improve access to nPEP (non-occupational Post-exposure Prophylaxis) and PrEP (Pre-exposure Prophylaxis). The former medication would prevent HIV inflection after exposure to the virus and the latter pills would reduce their risk of becoming infected. King says he would like to do fewer testing sessions in clubs and instead focus on getting men who have sex with men primary care where they can be regularly screened for HIV, which he says will enable physicians to catch infections earlier.
"A testing session in a club can't provide someone with a script for PrEP, and few actually have the time or inclination to discuss PrEP or PEP with people who are negative,” he saus. “We are going to catch far more people early in their infection and they will already be linked to care.”
Tietz says that the 30 percent rent cap would be key to the initiative as it would prevent homelessness for thousands of low-income New Yorkers who are permanently disabled by HIV/AIDS and would permit 1,000 of them to move out of the shelter system.
"These folks could then focus on their HIV treatment and not live in constant worry and fear of losing everything. People face lots of other barriers and challenges that we need to address, such as continuing stigma and discrimination, and mental health and substance use issues," Tietz says.
Several agencies involved
A lot of coordination is required across state and city health agencies to make the plan effective.
The initiative would require significant involvement from New York City health officials, and Tietz says that Mayor Bill de Blasio’s appointment of Lilliam Barrios-Paoli as deputy mayor of health and human services is an encouraging signal.
The mayor has also expressed support for the 30 percent rent cap, which he supported in the past as a public advocate and throughout his mayoral campaign. Although de Blasio’s platform did not outright acknowledge AIDS prevention, his interests and political affiliations suggest he is much more willing to work with stakeholders on the issue than Mayor Michael Bloomberg, who was often at odds with the HIV advocacy community.
Speaker of the Assembly Sheldon Silver and Senate Majority Leader Dean Skelos did not return requests for comment on the initiative.
New York State Senator Brad Hoylman, a Democrat who represents District 27 in Manhattan, is supporting the initiative and says that although he is not blindly optimistic, he has seen strong signals in discussions with the governor’s team that they are interested in pushing the initiative forward. Hoylman argues that although the plan can be argued on the merits of its cost efficiency, his primary argument is a moral one.
"The issue is a tremendous one for low-income people, for the most vulnerable people in our society. One reason for the misunderstanding is that people think the crisis is over," Hoylman said in a phone interview.
Benefits and costs
Each infection averted could save the state as much as $379,668 per person (in 2010 dollars) in lifetime medical costs according to the Center for Disease Control.
As for the initiative's costs, PreExposure Prophylaxis (PrEP) treatment, or Truvada, the only FDA-approved drug, costs between $600 and $1,000 per month, according to John Emery, spokesman for the New York State Department of Health. It consists of two medications taken daily as long as the risk of HIV is high. It could cost up to $14,000 a year.
For non-Occupational Post Exposure Prophylaxis (nPEP), the treatment, a combination of three medications, lasts 28 days. Its costs range from $600 to $1200, Emery says. Both treatments are covered under Medicaid.
King says this is the right time for an initiative to end AIDs, for a variety of reasons. The city has gained a new mayor, the Affordable Care Act came to fruition and the Medicaid Global Spending Cap Fund freed up additional money. Since April 2011, enrollment in the Medicaid program increased by over 390,000 but remained $2 million under the $15.9 billion target, according to the state’s March 2013 Global Spending Cap report.
"We found that sweet spot, where the political stars were aligned and science was saying what we’d known for a while," King says.
Will Cuomo act?
One of the key parts of the puzzle is having a governor willing to support ideas that aren’t always popular or easy and King says Andrew Cuomo, who has supported Medicaid reform, gay marriage and gun control laws, fits the bill.
"Cuomo has proven his willingness to champion bold ideas that aren’t always popular politically," King says. "He did that with Medicaid reform in an inclusive and participatory way. He cut the right deals that predecessors had not."
Advocates were disappointed that the governor did not mention the possibility of a task force in his annual State of the State address, but hope that he will mention it in his budget speech on January 21.
King says he doubts it will be mentioned, despite a "good faith effort on the part of the governor’s staff."
"There is probably not enough time to get a deal with [anti-HIV drugmakers] that would make everyone comfortable with the costs. I also believe we will see a fairly strong effort by the Department of Health to advance the initiative even if the Governor doesn't act at all," King says.
Tietz is more hopeful on the matter, and echoes the sentiment that New York State Health Commissioner Nirav Shah’s support is key to advancing a task force on ending AIDS.
"I think the near-term issues are entirely about the timeline, including the pace of ongoing price negotiations with key anti-HIV drugs makers, and whether such discussions will be far enough along to permit an announcement at next week's release by the Governor of his 2014-15 executive budget," Tietz said in statement.
In the meantime, advocates like Tietz are doing their best to carve out funding before late March when the budget is finalized. Tietz said he will raise the issue again on February 3 at joint legislative budget hearings on the Health/Medicaid budget, but he said he believes the governor’s key staff understands the urgency of making a decision.
Tietz wrote the governor a letter on January 14, requesting that he mention the initiative in his budget speech and give the initiative the public push it needs, which read, "If the task force is promptly named and convened by you it could complete its recommendations on a plan to end the epidemic, the outline for which has already been developed by the AIDS Institute, for inclusion in the 30-day budget amendments."