So-called Ryan White funds are named for the Indiana teenager infected with HIV by a blood transfusion who became the face of those struggling for dignity and support in the early days when AIDS was an almost universal death sentence. The money provides all kinds of support services for those living with HIV/AIDS, like food, transportation, help with housing, and, in some cases, tangential medical services. But the funding was cut this year, and Connecticut initially sustained some of the biggest reductions.

Gary Spinner, chief operating officer of the Hill Health Center who is also a physician's associate with a caseload of clients with HIV/AIDS, says the needs have changed as AIDS has changed (in this country, anyway) from a fatal disease to a chronic illness that can be managed for years.

"With HIV/AIDS as a chronic disease, the needs for support services are probably greater now than before," he said, although exactly how the money can best be spent has changed, in his opinion. Whereas in prior years much of the Ryan White funds were spent getting people tested and providing counseling, "Now the standard of care is that HIV testing be incorporated in all primary care, not just for those at risk, and that's the standard we've adopted and that's how we're practicing, although it hasn't been incorporated universally. If someone hasn't been tested, they should be tested, with the chance to opt out. That's very different than before - testing those at risk and spending a lot of time counseling each person."

A New Formula

Ryan White funding is comprised of three different rounds, so that a region (like Hartford Country or New Haven-Fairfield County) could get more or fewer dollars based on three different pots. Shawn Lang, policy director of the Connecticut AIDS Resource Coalition explained.

One is formula funding - based on the number of HIV/AIDS cases in an area. The feds changed the formula, from counting cumulative AIDS cases (in which Connecticut would have an advantage, as the state had a lot of cases early on) to counting those people living with HIV and AIDS. Further, an area had to have 2,000 AIDS cases within the past five years to maintain the top level of formula funding. "No area of the state had that, so we were dropped from an eligible Metropolitan area to a Transitional Grant area," Lang explained.

Was Connecticut a victim of its own success in reducing the spread of HIV? Actually, Lang says, the reduction has more to do with the fact that the state didn't start counting HIV cases until 2002, when the Department of Public Health began keeping track with a hybrid of codes and names, then in 2005 started true names reporting. So advocates tend to fault DPH.

Lang continues, "But DPH would say it's the advocates' fault because we didn't want names reporting; what they don't say is that we fought for code-based reporting since the early '90s. Meanwhile the state did nothing."

Aaron Roome, an epidemiologist who is coordinator for the state health department's HIV/AIDS Surveillance program, says if he had reported the number of cases the only other way he could have, according to federal guidelines, they would have been even fewer and would have resulted in even more cuts.

The other two pots are Supplemental funding - nationally competitive grants - and the Minority AIDS Initiative (MAI), which provides additional funding based on the percentage of all infected individuals who are persons of color. For example, two-thirds of the Hill Health Center's HIV/AIDS clients are African American and Latino. This year the feds are doing a separate MAI grant application, so more money will likely be coming down the pike.

Overall Connecticut lost $3.3 million, with almost half the loss to the New Haven/Fairfield Counties region. If the cuts had stood, they would have resulted in a loss of 65 positions state-wide.

To The Rescue

Enter a group of concerned state legislators including State Rep. Pat Dillon and State Sen. Toni Harp (pictured at top of this article). In a year with a budget surplus, they were able to replace almost all the lost federal funds.

(Dillon blogged about the issue during the heat of the session; click here to read her in-depth account of the national backdrop to the issue.)

Here's Sen. Toni Harp's two-sentence summary of what eventually transpired: "We put back with state funds about 95 percent of all the cuts, so all the programs in New Haven should be funded. They would have been out of luck if it had been up to the federal government, but the state came in and saved the day!"

Speaking a bit more seriously, she added, "We agreed with the advocates that these are very needed services and just because our number dipped a little - the feds said they did, but DPH didn't agree and neither did the advocates - we didn't want to see any cuts in service."

Advocates had also corralled unanimous support from the state's seven-member Congressional delegation to restore at least some of the federal cuts, according to Tom Kidder, Director of the HIV/AIDS Division at the Hill Health Center. "So potentially there could be another $700,000 in Ryan White money in the budget for Connecticut." Kidder said the bill passed in the House and must still go through the Senate and if it passes there, onto the president's desk.

Kidder sums it up this way: "Because the legislature - many people behind the scenes - picked up the vast majority of cuts to the Ryan White debacle, it's not nearly as bad as we thought it was going to be. And we're not out of the woods yet because the state funding's only for two years. But if that hadn't happened, it would have been the most devastating budget cut that people with HIV/AIDS would have had to weather."