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NYS AIDS Money Scramble

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As federal Ryan White Act moves toward reauthorization, cries of foul

With the final shape of the federal Ryan White AIDS Care Act’s reauthorization likely to be hammered out on Capitol Hill within a matter of weeks, if not days, New York AIDS advocates and congressional representatives are scrambling to pull off a “fix” to the legislation to avoid a loss of funding here that could total $80 million dollars over the next three years.

“Yesterday we heard about homeland security funding being cut for New York,” said Democratic Senator Chuck Schumer in a June 1 press conference at Manhattan’s LGBT Community Center that brought him together with gay and AIDS community leaders and West Side Democratic Congressman Jerrold Nadler. “Today, we are talking about AIDS funding being cut for New York in the same abject, careless, and self-destructive way.”

What Schumer, Nadler, and the community leaders were talking about was a new formula for allocating dollars under the Care Act’s Title II, the primary vehicle for delivering money directly to each of the states, which would count not only the number of people living with AIDS, as has been the practice in the past, but also factor in the number of those with HIV who have not advanced to AIDS. Advocates generally agree that, with the growing numbers of HIV-positive people able to forestall the onset of full AIDS symptoms, this broader counting is the right way to assess a state’s need for resources.

The problem, however, is that New York—in line with congressional directives—has counted its number of non-AIDS HIV cases; among the estimated 110,000 state residents living with HIV, for every one who has AIDS, there is another 0.56 living with the virus but without a medical diagnosis of AIDS.

Other states—among them, California, Illinois, and Massachuse­tts—have not done this counting, and in order to establish the comparable figure for those states, the bill assumes that every known AIDS case is accompanied by another 0.9 living with HIV free of AIDS symptoms.

In other words, New York’s funding under the bill would be based on multiplying the number of people living with AIDS by 1.56—that is, a true count of all HIV-positive New Yorkers—while those states who failed in their duty to count would receive funding based on multiplying their AIDS cases by 1.9.

“We did our job and for that we must be punished,” Nadler said.

The Government Accountability Office estimates that under the proposed new formula, New York would lose between $16 and $24 million from Title II of the Care Act in the first year of the reauthorization and up to $80 million over three years.

Particularly hard hit, according to Robert Cordero, director of federal advocacy at the AIDS service group Housing Works, would be funding for the state’s AIDS Drug Assistance Program, or ADAP, which provides treatment access for uninsured and underinsured HIV-positive New Yorkers ineligible for Medicaid. New York’s ADAP program has always been a model for other states in providing universal access, without waiting lists, for all those eligible and a state-of-the-art roster of medications. Nationwide, ADAPS have been the safe havens allowing many people living with HIV to manage their health without the intermittent crises than in earlier stages of the epidemic were so common.

According to Nadler, the impact of the new funding mechanism would be enhanced by the gradual phasing out of “hold harmless” provisions in Ryan White that limited the decline in any jurisdiction’s funding from one year to the next.

Schumer and Nadler were at the Center last week to raise the visibility of their critique of the new funding formulas.

“Today Congressman Nadler and I are announcing a campaign to fight tooth and nail to change this formula and restore funding to New York,” Schumer vowed.

New York congressional opposition to the new Ryan White approach actually began two weeks earlier when Senator Hillary Rodham Clinton was the lone dissenter in a 19-1 vote in the Health, Education, Labor and Pensions Committee that approved the legislation. On May 31, one day before the Schumer-Nadler press conference, she wrote to Senate Majority Leader Bill Frist and Minority Leader Harry Reid urging them to slow down the Care Act’s reauthorization until New York’s concerns could be addressed. Although the state represents only seven percent of the nation’s population, it has 17 percent of all those living with HIV.

But the process is not slowing down, with the corresponding House committee likely to take up the bill next week, and full House action possible soon after. The bill is being negotiated by the Republican and Democratic ranking members of the health committees in both houses. Capitol Hill sources say that once the details are agreed upon by that group, no amendments will be entertained by House or Senate leadership. So the timing of the actions by Clinton, Schumer, and Nadler and the fact that Cordero and Ronald Johnson, associate executive director of Gay Men’s Health Crisis, are spending this week in furious lobbying should come as no surprise.

Cordero, for one, is hopeful that New York’s concerns will be addressed, an assurance he said he has gotten from staff members working for the ranking Senate Democrat on health, Ted Kennedy of Massachusetts, and his House counterpart, John Dingell of Michigan.

Johnson voiced less certainty, and also noted that there are not yet hard data on how Title I funds—which go to hard-hit metropolitan areas, New York City chief among them, for their local efforts—will be appropriated.

“We are running blind in terms of how that will settle out,” Johnson said, noting that some of the factors hurting New York State in terms of Title II funding could also disadvantage the city in its Title I appropriation. Speaking to the fact that the urban area formulas are now yet clear this far along in the legislative bargaining process, Johnson said, “That is shameful.”

In contrast, Cordero said his understanding is that New York City will be fine once the actual numbers are spelled out, which he said should be within a week. He also noted that Title I has been expanded to allow dollars to be targeted to smaller cities—including Rochester and Schenectady in New York—as well as the largest urban centers.

Still, there would probably be no disagreement between Cordero and Johnson on the need for a bigger federal AIDS pie. Cordero applauded the fact that Congress added $95 million to the Title II money this year—even as it considers stiffing New York—but said that AIDS advocates nationwide are thinking outside that still-too-small box, looking for increases of up to $500 million per year. In his estimation, an increase on that order is needed to end urban/rural disparities, shortfalls in ADAP access in many states, and other deficiencies in the national effort to ensure adequate treatment in the epidemic. Such an increase would raise the annual Ryan White outlay from $2.1 to $2.6 billion.

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Updated 5:17 pm, July 20, 2018
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