Posted by: Randy Allgaier | May 26, 2007

Ryan White CARE Reauthorization: Lessons Learned. What did the process teach us and what are the implementation issues we are now realizing?

Last year was a difficult year for advocates in the HIV/AIDS community. Reauthorization of the CARE Act, which was supposed to have been completed by September 2005 ended up being bumped to the second session of the 109th Congress and a complex and frustrating bill passed at 2 AM during the lame duck session with no official report language attached.   As the funding of “last resort”, CARE funds are used to provide treatment and services for thousands who would otherwise fall through the cracks.

It was an “interesting” process and one that caused a very arduous implementation process for many grantees. Some of the difficulties are just being realized now- in mid 2007.

The bill was tightly controlled by the “Bi Bi Committee” as it became to be known but was officially – the “Bipartisan Bicameral Committee”. More specifically the work was done by the staffers from both the Republican chairs of the and Democratic ranking members of the committees of jurisdiction- the House Energy and Commerce Committee and the Senate Health Education Labor and Pensions (HELP) Committee. The key players ended up being staff from Senator Kennedy’s (D-MA) and Senator Enzi’s (R-WY) offices.

The bill that was being shopped around in 2005 and early 2006 was dreadful and the community was rightfully more interested in stalling it because of some of the more draconian aspects to it. All along of course the HIV/AIDS community was worried about “medicalization” of the bill and ultimately that happened anyway – at least for Titles I and II (now Parts A and B) through the provision that 75% of grants be applied towards “core medical services”. Of course many folks like me in the community argue that medical care is nothing without the support services needed to keep people in care. One advocate- Pat Bass, the former Chair of the CAEAR Coalition- has said that medical care doesn’t come from a vending machine- it is more complex.

But towards the end of the 109th Congress it was clear that there was pressure to pass something and the debate became heated and various items took shape. Many of the community’s concerns were addressed by ambiguous language – so it would be open to interpretation and would also be dealt with in accompanying report language but still the community was not happy with the piece of legisaltion.  This was clear when at one of the final meetings where the community was invited to participate.  Frank Oldham, the Executive Director of the National Association of People with AIDS (NAPWA) read a statement that essentially said that NAPWA would not be able to support the bill.  Other advocates in the room stood up in support and Congressional staff were shocked.  But they were commmitted to passing something by the end of 2006 and the community continued it dialogue with Congress to ensure that our voice remained part of the mix although we would rather have waited until 2007 to do reauthorization at that point.

There were two big issues that consumed the community.

Instead of AIDS case reporting the push was to use HIV data- a good idea but a there were some implementation problems that were forseen at the outset.   The issue that arose was how to deal with using HIV data for formula grants when not all states had data through “mature” names reporting systems. States like California had been of the opinion that HIV reporting was a disincentive to testing and had built a non-names based reporting system due to that concern others, like Georgia had not collected HIV data for reasons similar to why others had gone “non-names”.   However the Health Resources Service Administration (HRSA) gets its data for numbers from the Centers For Disease Control (CDC) where all cases in the national are reported (NB: in names reporting states, cases are reported at the state level by name- but they are sent as codex reports to the CDC) and the CDC decided (seemingly capriciously and witout much notice) only to accept data from names reporting states as valid data. California and other non-names states had just begun to develop names reporting systems recently and would not have mature data for a number of years and their HIV data would not receive certification from the CDC.

A huge problem erupted. If you disallowed states like California to use its data- how would that be fair- since so many cases were in some of these states. It would be absurd to not find a way to be more equitable. A solution was proposed that would allow states like California to use its AIDS cases and add HIV cases based on as a standard ratio of HIV cases to the number of AIDS cases.

This posed a problem for New York in particular which has a mature names reporting system and also had a very different ratio of HIV to AIDS than was being proposed for the formula and since it had certified data it would be required to use the actual data rather than this “ratio” formula.  New Yorkers felt that the proposal was punitive to their use of actual data and benefited those that relied on the ratio and did not “real” data. This argument took a great deal of time and energy and ultimately a deal was struck that was “acceptable” to all parties that included a “de-duplication penalty for non-names data, a hold harmless on the amount a jurisdiction could loose in its formula and a cap on what it could gain but no one was jumping up and down with joy.

Another issue that obsessed national HIV/AIDS advocated was the definition of “medical case management” that was listed in the official list of “core services” eligible for funding with 75% of a CARE grant. The definition of “medical case management” varies from state to state, but usually means case management provided by an RN or other health educated social worker.

The vast amount of case management for people with HIV/AIDS is provided within a community based model and not a medically based model. While the goal for community based case management is positive health outcomes and ensuring folks have the support they need to ensure regular medical care, it is not usually provided by a medical professional. Medical case management, through this definition, is needed only by clients with the most complex needs and is exceedingly expensive. A good chunk of money is spent of community based case management and if it was to be relegated to the 25% support service allocation of a grant; it could cause upheaval in the system.

I also believe that many AIDS service organizations see case management funding as their organization’s life’s blood and they felt threatened. Any messing with case management could result in the demise of organizations and put a system of care in a very difficult position. Republicans were clear- they wanted medical case management. Ultimately, Senator Kennedy’s staff added the words “including treatment adherence services” to the phrase “medical case management” and that, they believed, allowed for a broader interpretation. As it turns out- they were correct. When HRSA released its service category definitions last week they broadly defined “medical case management and treatment adherence services” to include community based models of case management.  It seems that this was one of the only times in the legislation that ambiguous language actually worked for the community’s benefit.

Other issues took focus as well but what resulted was a piece of legislation of extraordinary complexity with a lot issues that have made it difficult for grantees to manage the process of implementation.

One problem that has developed has been how the grant monies have been awarded. Previous to the new bill, a grantee would get its formula, supplemental and Minority AIDS Initiative (MAI) funding in one chunk on March 1. This allowed for jurisdictions to plan for the next 12 months. This year, the grant is awarded in three parts- the formula in March, the Supplemental in May and the MAI in August making it neigh impossible for jurisdictions to appropriately plan. For smaller jurisdictions it has caused some very severe problems in continuity of services. Smaller jurisdictions often do not have the resources or capability to keep services running without the guarantee of funds for the feds and they are severely compromised by this piecemeal delivery of funding.

Another issue that has arisen is the list of fundable support services. Most notably- residential substance abuse services and complementary therapies are no longer allowable CARE funded services. Substance abuse is a very huge co-factor in HIV/AIDS and disallowing this category of service for funding is, quite frankly, obscene. Why did this list suddenly not include some very important services? It isn’t clear- but some believe that it was because the legislation listed support services to be funded and said “services including” and did not say “services including but not limited to”. We cannot be quite sure if this was the problem, but it might well be. It is clear that this new list was not “Congressional intent” – or at least the intent of Democratic staffers.

Another problem was what was considered to be the base in calculating a formula grant. The legislation refers to an “adjusted 2006 award” to calculate the base. The actual language states:

“For fiscal year 2007, an amount equal to 95 percent of the amount of the grant that would have been made pursuant to paragraph (3) and this paragraph for fiscal year 2006 (as such paragraphs were in effect for such fiscal year) if paragraph (2) (as so in effect) had been applied by substituting “662/3 percent” for “50 percent.”

This very complex language led HRSA to apply the worst possible funding scenario to San Francisco and, according to Democratic staffers working on the legislation, it was not Congressional intent. However a researcher, Wayne T. Steward, PhD, MPH at the University of California San Francisco predicted San Francisco’s formula award to the penny, so it seems likely that “Congressional intent” did not matter and that this language could be narrowly interpreted, which is how HRSA proceeded.

The community relied on “Congressional intent” and clear direction to be provided through report language and unfortunately there was never any official report language approved by both chambers of Congress  attached to the bill.  I think we have learned a lesson here. It is clear that Democrat Congressional staff did their best, but without real report language it has been up to the Bush administration’s department of Health and Human Services (which includes HRSA) to have the final say about interpretation and in many ways- “Congressional intent” is moot.

Another issue that has arisen is the lack of transparency in deciding “Supplemental Awards” – specifically for Part A (aka Title I jurisdictions). A provision of the final version of the legislation indicated that losses in the formula grant would be a high consideration factor in deciding a supplemental award amount. It is clear that this was not the case for the San Francisco Eligible Metropolitan Area (EMA) which took an overall 34% cut ($9 million). From the raw numbers it seems that the loss in the formula grant were of no consideration whatsoever in the stunningly low supplemental allocation.  If a competitive grant process is to continue in a new version of this bill after it sunsets in 2009, it is imperative that there be a more transparent process. One might wonder if there were any politics at play when the city represented by the Democratic Speaker of the House has such a drastic cut in its funding.

Another area of concern was the waiver on the 75% core medical services and 25% support services provision.  The waiver was supposed to be an “out” for folks who felt that the support services were vital to fund and that many of the core medical services were being provided.  These are areas that usually have good state Medicaid programs so CARE funds are needed to fill the gaps more than to provide direct medical care.  Initially HRSA was not going to allow for a waiver process in 2007 since they hadn’t been able to develop a “rigorous” process for a waiver application in time.  But members of Congress complained and a suit was filed by the Nassau / Suffolk NY EMA so HRSA relented and allowed broad ability for waivers in the current fiscal year. However it is unclear what sorts of requirements will have to be fulfilled to apply for a waiver in the future. On a recent visit to the Hill where I and other advocates met with Congressional staff- we were asked repeatedly why more jurisdictions had not applied for the waiver (I believe only 3 Part A EMAs/TGAs applied). Most advocates and Health Departments think the waiver is a trap. If you state in a waiver application that many needs are being met and then turn around and make the case for a supplemental grant which is based on need- there is a Catch 22 at play.

The Ryan White Treatment Modernization Act of 2006 previously known as The CARE Act has been medicalized, convoluted and made extremely complex causing difficulties for Part A and Part B jurisdictions in implementing the provisions of the legislation. As the community begins to think about what is beyond the 2009 sunset of this bill, we need to have very serious conversations about how we think creatively and in ways that are not necessarily within the current paradigm or structure to address the realties of the epidemic.

If we do not initiate creative change that will meet the needs of our community, the process will be taken away from the community and changes will be made without our input or concerns being a priority. Remember Welfare Reform? By not paying attention to it and re-tooling it, finally the issue was taken away from welfare advocates and their voices were minimal – relegated to grumbling from those that supported an out of date bureaucracy. We cannot afford to let that happen to HIV/AIDS.


  1. While everything is confusing here, the thing I find the most perplexing is that monies distributed through fiscal agents and not distributed directly to agencies is not affected by the 75/25 split. Can anyone help me with this?

  2. I am perplexed by your question-and Part A or Part B grant to a jurisdiction is required to adhere to 75/25- what fiscal agents are yoru referring to?

  3. Sorry for perplexing you! If you have an e-mail address that I could send my question to, I’d love to go into it in a bit more detail (I can be reached at

    Basically, it was to my understanding that if a region had separated its HIV/AIDS Coalition into two completely separate entities, planning and fiscal, when the Part B money was allocated to the fiscal agent, they could then distribute the funds as they saw fit. They do not have to distribute their funds so that 75% of their funds went to core services. However, if the money was given directly to the planning coalition, then the money has to be split so that 75% is core and 25% is support.

    This is what the PADOH says.

    I’m also interested in knowing what other states responses have been to the 75/25, besides filing waivers. I heard that North Carolina’s regional planning coalitions have been abolished and that everything is now done at the State level. Does it appear that all regional coalitions will make way for State DOH HIV coalitions in 2009?

  4. I am concerned about the CDC not reporting the proper amount of new HIV/AIDS cases. My perception is most of the clients receiving these funds are not aware much, or concerned about politics. My region has many ex drug addicts with little experience in much more than survival. Torn between caring as much as the clients, or the price we pay for the treatment of new cases and the victims who become infected. Our government is as much out of touch with these issues as they seem to be with most issues of the majority of voters.

  5. Mr. Allgaier,

    My email is I have some specific questions regarding your perspectives on the social work role in Medical case management. Can you contact me, please?

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