In It for the Long Haul
This article was written for The Voice, the newsletter of the Title II Community Action Network (TII CAN).
World AIDS Day, December 1, protestors gather outside the state capitol to bring attention to the budget crisis that threatens the ability of the state health department to provide essential medications used to fight HIV. For months, community advocates had been urging the leadership of the health department and the governor's office to work to find a solution to this problem before the money ran out and services were compromised. The negotiations had yet to produce a firm commitment to increase the budget for this program. Any additional funding would have to come from state revenues, as federal funding levels had failed to keep up with the growing demand for services. The state was facing a tight budget of it's own, and funding for AIDS was considered controversial for both the Governor and the legislature.
The day after the spirited protest, the Governor's office announced that they would be releasing funds through an emergency appropriation to keep the program solvent until the legislature could tackle the problem during it's regular session at the start of the year. The crisis had been averted, but for how long?
This story is not unique to Georgia; it's a story that has been repeated in many states around the country. What is interesting about this story is that it is not referencing events from the past year, but from a protest that occurred in 1992. The program the activists and advocates were fighting for was called the AZT Indigent Trust Fund, Georgia's precursor to what is now known throughout the nation as the AIDS Drug Assistance Program (ADAP). The lesson to be learned from the story is less about the power of protest (although that, too, is a valid lesson), and more about the importance of perseverance.
We won the battle for an emergency appropriation of $150,000 from the Governor. We were successful in getting the state legislature to begin to fund this program directly to the tune of nearly $300,000. We had raised public awareness of the challenges that HIV+ folks have in accessing medications. Unfortunately, back in 1992, we had made a serious error in judgement that would hamper our efforts in years to come. We thought that by winning these battles, our work was done.
In 1996, we were faced again with a crisis in funding for medications. Protease inhibitors had hit the market, and combination therapy had become the recognized standard of care. Georgia's share of the federal funding for ADAP had grown to tens of millions of dollars. However, state funding for AIDS-related medications had stayed right at the levels we had fought so hard for four years earlier. We had not been building our support in either the Governor's office or the halls of the state legislature. In 1992, $150,000 was enough to keep the program running. In 1996, we would need at least $2.5 million, and the waiting list was growing so rapidly that it was nearly impossible to predict what the total costs would be at the end of the next complete state fiscal year, some eighteen months away. The Governor's office was very explicit, this time they would not be supportive of our efforts to increase the state contribution for ADAP. It was apparent that this time, a quick solution was a near impossibility.
By the end of 1997, we had developed our first ADAP working group. We had begun to build bridges between medical providers and social service agencies, as both became aware of the new role that medications would play in their ability to serve those living with HIV. The community advocates and pharmaceutical industry representatives were overcoming their mistrust of each other. The bureaucrats had begun to realize that communication with this working group was essential, even if it was awkward at times. It took several years of effort, but by the end of the 2000 legislative session, the Georgia ADAP waiting list had been eliminated, again.
This time, however, many of us had learned the lesson of perseverance. We had seen the long-range budget projections, and knew that the federal increases had begun to taper off. We were celebrating this victory, but we were not pulling back on our work. By May of 2001, needs had again surpassed demands and the ADAP waiting list was back. However, this time, the Georgia advocates were already at work. The Georgia ADAP Task Force now meets several times a year to develop budget projections and legislative strategies. We work to ensure that there are individuals at as many public hearings as possible to talk about the program, and that both providers and consumers of services are well represented at these forums. We also talk about ADAP to other interested advocates such as those who represent the concerns of people of color, the poor, the homeless, women, children and families. Our work on ADAP funding does not end.
The 2002 legislative session proved the importance of the creation of ongoing advocacy structures. Five years of coalition building had begun to pay off. ADAP was listed as a priority program at both the department and executive level. The legislature was well versed in the important role that this program plays in the continuum of care for those living with HIV. Appropriators took more time to review the materials in our briefing books. In one of the tightest budget years in recent memory, Georgia's ADAP was spared mandatory budget cuts, and saw a significant increase in state level funding. Once again, the waiting list had been eliminated, but this time there was no question that our work was far from over.
ADAP Waiting List Eliminated -- For Now
The dust has finally settled from the longest legislative session in Georgia history. All in all, the session turned out very well for people living with HIV. The initial figures, first reported in last month's Survival News, have been signed into law by Governor Barnes. Georgia now leads the southeast in state financial contributions to the AIDS Drug Assistance Program. In fact, the Governor has approved the legislature's recommendation of a total of $4.7 million in new state funds for ADAP. This brings Georgia's total contribution up to $12.8 million for the current year. Because of this extraordinary level of funding, combined with increases in our federal ADAP funds, the dedicated staff at the Department of Human Resources has been able to temporarily eliminate the waiting list! DHR has also taken the steps of adding two additional drugs on to the ADAP formulary, valganciclovir/valcyte and viread/tenofovir. This brings the total number of medications available through ADAP to approximately 50, a far cry from the half-dozen or so that were available just a few short years ago.
The lifting of restrictions on our ADAP program are only temporary. The current total funding for the program is at approximately $36 million. This will allow for 4,300 people to be enrolled in the program at any given time. As of mid-May, a total of 4,259 were enrolled, so once the additional slots are taken, a waiting list will need to be reinitiated. It's important to begin the process of enrolling in ADAP, even if there is a waiting list at the time you originally enroll. Being on the waiting list is often a requirement of receiving medications through private Patient Assistance Programs sponsored by pharmaceutical companies. Also, the sooner you are placed on the waiting list, the sooner you are apt to become enrolled in the program.
Finally, I've also received final confirmation that beginning in July, Medicaid recipients will be able to have genotypic and phenotypic HIV resistance tests paid for through Medicaid. Georgia is now among the first states in the country to begin to reimburse for these important diagnostic tools. A huge amount of thanks must go to the administration and board of the Department of Community Health for having the vision to provide state of the art care for people living with HIV in Georgia.
Got a comment? Write to Jeff: Jgraham@aidssurvivalproject.org.
This article was provided by AIDS Survival Project. It is a part of the publication Survival News.