Has Darkness Fallen on the Sunshine State?

What was once revered by many in the HIV/AIDS community as a model state for the AIDS Drug Assistance Program (“ADAP”) – even to the point where many people living with HIV/AIDS fled their home state and moved to Florida where access to care and treatment was all but assured – has turned into a nightmare. High unemployment and inadequate federal/state funding, coupled with poor budgeting by the State Department of Health ("DOH") has led 3,967 Floridians living with HIV/AIDS to be placed on ADAP waiting lists, and that doesn’t even take into account the 6,500+ patients who were saved by a last-minute deal inked at the 11th hour with Welvista Pharmacy. And now, darkness seems to have befallen the Sunshine State as the state seeks to change its ADAP eligibility from 400% of the Federal Poverty Level (“FPL”) down to 200% FPL under the state's proposed Rule 64D-4.

What does that mean?

It means hundreds - if not thousands - of Floridians living with HIV/AIDS will be deemed ineligible for access to their live-saving medications under Part B of the Ryan White CARE Act. What the Florida Department of Health's Bureau of HIV/AIDS has proposed would be equivalent to playing in a basketball game, only to have the referee change the rules mid-way through the game in a manner that almost assure your team’s defeat. Except, what is happening in Florida is more than a game…it is a matter of life and death!

According to the AIDS Healthcare Foundation ("AHF"), Florida's Legislature is compelling DOH to hold workshops on Rule 64D-4. This rule concerns HIV/AIDS patient care services eligibility criteria, among which the income requirement is included - reducing the FPL income requirement from 400% FPL to 200% FPL. There is no alternative for these patients other than pharmaceutical Patient Assistance Programs ("PAPs"), which are not sustainable substitutes. The Legislature is trying to make a political statement that the ADAP waiting list can be effectively eliminated by lowering FPL eligibility. The change will not only throw off a massive amount of current ADAP clients, but also significantly reduce the wait list number. Florida would then no longer have the greatest wait list in the country and this action would set a precedent for other states to enact the same measure.

Making "cents" out of the mess

The math is simple. The Florida Legislature is trying to close the state's ADAP funding gap by balancing the budget on the backs of the very people the program is designed to help. With the high cost of the anti-HIV medications, access to care and treatment would be outside the reach for most of the Floridians living with HIV on currently on the state's ADAP waiting list.

"If you make $30,000 a year, you wouldn't qualify to ADAP," Carl Schmid of The AIDS Institute told the Florida Independent. "The drugs cost between $10,000 and $20,000 a year. You'd spend half your income on drugs" (04/11).

With the economic downturn, more Floridians are turning to ADAP for their anti-retroviral medications.

According to the National Alliance of State & Territorial AIDS Directors ("NASTAD"), in June 2009 there were 13,258 clients served on Florida’s ADAP. The Florida ADAP budget in fiscal year 2009 was $93,404,741 – of which $8,000,000 was the state contribution, or 9% of the total budget. In June 2009, drug expenditures totaled $5,747,226 with 27,992 prescriptions filled in Florida.1

In comparison to the previous year, there were 10,738 clients served by Florida’s ADAP in June 2008 – which represented a 23% increase. That same month, drug expenditures were $3,868,505 for 17,792 prescriptions filled, or increase of 49% and 57%, respectively.2

Considering that Florida only contributes about 9% toward its State ADAP (all other funding comes from the federal earmark and pharmaceutical company rebates), it is hard to imagine the Florida Legislature implementing more cost containment strategies. Then again, they did cut $2 million from the program two years ago - which many HIV/AIDS advocates contend helped to fuel the ongoing crisis in the Sunshine State.

So much for a safety net in Florida. But the Fat Lady isn't singing just yet...

The impending firestorm...

The proposed eligibility change has the state’s HIV/AIDS community up in arms. Don’t expect them to sit around quietly, either. The Department of Health has scheduled three public meetings in Tallahassee, Tampa and Miami, each of which will include a discussion of the proposed "changes to the Federal Poverty Level" as well as other issues about Drug Assistance Program eligibility. Expect nothing less than a firestorm in these three cities over the coming weeks. A massive mobilization effort is underway. Let's just hope that Florida's Legislature - as well as their newly-elected Governor - is listening.

Late last year, Florida had initiated the process of lowering its ADAP eligibility to 300% FPL (Rule Amendment No: 64D-4.002, F.A.C.), but it was halted when the Governor Rick Scott was sworn into office. His very first order of business as the state's new chief executive was to halt all pending regulatory actions, including the proposed rule impacting ADAP.

[Photo: Florida Governor Rick Scott]

Some HIV/AIDS advocates were totally blindsided when the new rule was proposed that called for even steeper eligibility restrictions. Yet others have been bracing for the worst. Florida, like many other states, finds itself in the midst of a fiscal mess; but rather than adopting policies based on what is often termed "shared sacrifice," Floridians living with HIV/AIDS appear to be the ones sacrificed under the proposed changes.

"And unfortunately, it may be for all Ryan White B funded programs....this really shouldn't be a surprise to anyone, as it was being proposed to lower it it to 300% of FPL before Governor Scott suspended rule making in the State," summarized David Brakebill, aaa+ member from Key West.

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1 National Alliance of State & Territorial AIDS Directors, “National ADAP Monitoring Project Annual Report,” Summary Table I, p. 13, May 2010.

2 National Alliance of State & Territorial AIDS Directors, “National ADAP Monitoring Project Annual Report,” Summary Table II - Total Clients Enrolled/Served, Drug Expenditures, and Prescriptions Filled, June 2008 and June 2009, p. 14, May 2010.