The Ryan White CARE Act…

The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, the landmark healthcare legislation that provides medical care and other services for thousands of Houstonians living with HIV/AIDS, is at risk of being ingested and transformed by the congressional controversy surrounding healthcare reform. The CARE Act currently provides $25 million in funding for a variety of medical and support services for more than 8,700 Texans in and around Houston living with HIV/AIDS, 70 percent of whom are below the federal poverty level. The CARE Act, like most federal legislation, requires two main congressional actions to live and flourish: “authorization,” which essentially allows the Act to exist, and “appropriation,” which ensures that it is funded to fulfill its mandate.

First authorized in 1990, the CARE Act has undergone seven congressional reauthorizations, most recently in 2006 during a much more hostile political environment than currently exists. At that time, a “sunset” provision was put into the legislation. This clause stipulated an automatic repeal of the Act on September 30, 2009. This “sunset” language is often used with regard to controversial legislation to constrain it in some way for political and economic reasons.

Bruce Turner is Chair of Houston’s Ryan White Planning Council, the deliberative body legislatively mandated to prioritize and allocate how federal CARE Act funds are spent in Houston and its five surrounding counties. “During the 2006 reauthorization, there were several compromises crafted in order to obtain bipartisan support for the Act within a Republican-controlled Congress. Representative and then-committee chairman Joe Barton of Fort Worth included the sunset provision as part of that process,” stated Turner.

At press time, there is an intensive push on congressional leaders to resolve the situation; 280 national and local organizations have joined together to ensure passage of legislation that will enable the Act to continue in its present form. Procedural wrangling has collided with shifting congressional priorities, resulting in a series of sudden impediments for the Act. “Congress runs on three routes,” Turner said, “one for budget, one for allocation, and one for policy issues. There is money in the 2010 budget for the Act, but the policy has to be in force and authorized. In this case, Congress started the process late, primarily as a result of the tremendous amount of time and resources that have been designated to the healthcare reform. The CARE Act essentially got lost in the shuffle.”

While this snarl may appear to be merely bureaucratic red tape, implications for individuals utilizing CARE Act-funded services are serious. Clients access HIV services through a series of local CARE Act-funded entities. These agencies are funded through a complex allotment system whereby funds flow from federal sources to states, cities, and eventually to organizations that provide medical and
social services in Harris and the surrounding counties. According to Turner, “Due to this sunset provision, the process whereby state, county, and local governments access federal funding has been delayed.”

While the Act emerges from legislative limbo, its budgetary cycle runs from March 1 through February 28. Consequently, current services will remain funded through February, 2010. According to Turner, the consensus of community advocates and officials with the Health Resources and Services Administration (HRSA)—the federal agency responsible for oversight of the Act—is that, due to the specific needs of the clients it serves, the Act must remain in place in its
existing form.

Several Houstonians were in Washington in mid-September to educate legislators on CARE Act policy. Randall Ellis, Senior Director of Government Relations with Legacy Community Health Services, was there. “In the past there was no sunset provision in this legislation, so HRSA was able to administer the Act as it had in previous years. This year has been different, and reauthorization is now more important than ever,” stated Ellis.

Some advocates have criticisms of the Act, which they now believe need to be addressed. According to Ellis, “What we would like is a stand-alone bill that reauthorizes the Act for three years and corrects some of the problems that have occurred since the 2006 reauthorization….
A consensus document has been created that outlines what community advocates think should be done. Regarding funding, we want to preserve and increase existing federal allocation to the Act maintaining the wording ‘such sums as necessary.’  Secondly, for those states that either do not have or only recently have begun using named HIV reporting, they need additional time to develop more accurate HIV [versus AIDS] data.”

Named HIV reporting has been used in Texas for a decade. It provides detailed confidential information on how many people are HIV positive in a given area and uses this information to track the epidemic. This allows policymakers to forecast (to some extent) future epidemiological trends. Most importantly, named HIV reporting data is used as a component of the formula that determines the specific amount of CARE Act dollars allotted to any jurisdiction.   

In metropolitan areas with large numbers of HIV/AIDS cases and a history of named HIV reporting (such as Harris County), there is a well-established basis for funding. In Texas, the cities of Dallas, Fort Worth, Austin, and San Antonio all fit this profile. However, other cities are experiencing emerging epidemics and are now also requesting CARE Act funding. Since federal funding has been essentially flat, these newer jurisdictions are demanding another piece of an ever-diminishing resource pie.

According to Ellis, “The last major point that the consensus document wants to make affects cities, such as San Antonio, Austin, and Fort Worth, that all had decreases in reported HIV cases. These areas could lose a significant amount of their existing CARE Act funding. The document seeks a ‘Hold Harmless’ provision that would limit the amount of funding that could be taken away from any area in a given year, thus preventing drastic variations in funding and continuity of care over budgetary cycles.”   

Ken Malone, Houstonian and Board Chair of the AIDS Action Foundation, a national organization dedicated to advocating for the needs of individuals with HIV/AIDS, has concerns about how a reincarnated CARE Act melds with various potential reform proposals. Returning from Washington in mid-September, Malone stated, “We want a three-year authorization so that we can have time  to make sure the myriad aspects of HIV-related healthcare are covered within any new reformed framework of healthcare—not only medical care but all of the wraparound services that accompany it, including prevention and support. The Office of Management and Budget is currently writing the legislation for the Continuing Resolution for reauthorization. Congress is very much aware of the importance of the CARE Act; however, there are some sticking points that we will have to address—specifically, the wording in the Act stating that it be funded with ‘such sums as needed.’ Legislators, particularly in the Senate, would like to tighten the financial screws so as not to allow unlimited resources to be allocated to the Act.”

With September 30 looming, Legacy’s Ellis reports, “A bipartisan effort is now in place to accomplish reauthorization, but it’s clear that they aren’t going to make the deadline. The process through which this situation is managed is very complex; it possesses intricacies that constituents and congressmen find difficult to understand.”

Advocates are concerned, but because budget allocations have been made through February 2010, services are not going to be withheld … yet. “Congress passes continuing resolutions all the time and we are hoping that this will happen,” stated Ellis. “We need language that extends the sunset provision until a new bill is passed by the House and Senate and puts it on the president’s desk before the beginning of November.

Even as Congress scrambles to address immediate issues, all three advocates interviewed have serious long-range concerns. The Planning Council’s Turner stated, “Regardless of what form the Act takes in the future, individuals with HIV need to be seen by specialists, not lumped in with general practitioners who have little or no expertise.”

Ellis is concerned about the possibility that the Act will be folded into existing publicly funded programs, many of which are slated for reductions as the result of reforms now being debated. “HIV is still a unique disease,” Ellis stated. “Portions of this bill may be shifted into Medicaid, and in Texas that is a concern. The Texas Medicaid program is very restrictive—there are many things needed by people with HIV that are not currently covered. An extension of the CARE Act would give us time to address those issues.”

Ken Malone concurs: “This disease still merits separate consideration from other diseases. The infection rate is still rising, the stigma associated with HIV is as negative today as it was at the beginning of the epidemic, and, most importantly, this is a communicable disease with serious implications for public health. We still have a lot of work to do before we can consider HIV chronic or manageable. Even now, one third of the individuals on antiretroviral therapy experience significant difficulty with their medications.”

With more than two billion dollars at stake nationally and $147 million for Texas, given a Democratic-controlled Congress and a renaissance-minded president, one wonders how CARE Act funding could be so vulnerable. One of its protectors, Senator Edward Kennedy, is no longer here to immunize it from attack. As chair of the Energy and Commerce Committee, he and his staff were the long-time standard bearers for the Act. Recently, Kennedy staffers have been pummeled by demands on their expertise to address reforms and the death of their leader, but they are now back at the forefront of the CARE Act debate.

Locally, Rep. Gene Green has been championing the Act. As one of five Texans on the committee, Green has a longstanding commitment to healthcare and HIV. Just as it seemed likely reauthorization was to be lost, Green ensured resurrection, scheduling a congressional committee hearing. This provided the impetus to get the ship of state in motion, lifting the CARE Act away from the leviathan of healthcare reform.

In homage to the Act’s original grassroots beginnings, individual stakeholders have mobilized to ensure visibility for the Act within the larger healthcare debate. Houstonians have written more than 1,000 letters to their representatives, a vigil was held at City Hall, and advocates have been educating legislators and their staffs on the value associated with continuity for the Act and its funding.

Despite all that has been accomplished in the past weeks, March 1, 2010, may still be the date of reckoning for people with HIV/AIDS in Harris County and across the nation. But Houston’s trio of advocates is cautiously optimistic. The outstanding issues (redistribution of  limited funding to emerging HIV populations, named HIV reporting, and verbiage like “such sums as needed”) are contentious. This could be the winter of our discontent for HIV activists, service providers, and patients.   

OutSmart Magazine will update readers on developments as the situation in Washington and Houston unfolds.   

Rich Arenschildt profiled Linus Lerner and Jason Villegas in the September issue of OutSmart magazine.