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September 21, 2006
RYAN WHITE REAUTHORIZATION EXTRA EDITION
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Trouble's brewing on Capitol Hill for Ryan White, and it is up to YOU to make it right! |
Last-minute moves toward Ryan White reauthorization have people living with HIV/AIDS and advocates in feverish debate - but the bottom line is the money on the table is about a half a billion dollars short of what we really need to provide basic HIV/AIDS care across the U.S.
(For what it's worth, that amounts to about two day of costs for the war in Iraq.)
Following each increasingly convoluted version of the bill, people living with HIV/AIDS and frontline service providers have regrouped and responded to legislative staff - only to have their input ignored or watered down. Before October the Ryan White HIV/AIDS Treatment Modernization Act of 2006 will head to the Senate or House- where it can and should be fixed.
Over a quarter of a million Americans living with HIV can't get access to HIV treatment. And the current Ryan White bill wouldn't provide universal access. Politics as usual is not an acceptable excuse.
CALL THE U.S. CAPITOL TOLL FREE AT 888-802-1207 AND SPEAK TO YOUR REPRESENTATIVES IN THE HOUSE AND SENATE - TELL THEM TO TAKE FOUR STEPS TO FIX RYAN WHITE REAUTHORIZATION LEGISLATION:
1. EXPAND FUNDING BY $500M TO ENSURE ACCESS TO CARE NATIONWIDE
Stop playing regional politics and get the money we need to care for all Americans living with HIV/AIDS into this bill. We need a total of $500 million in additional funding to eliminate ADAP waiting lists, support areas with emerging epidemics, and protect access and quality in high-prevalence areas. This includes a $70 million increase for Title II base and an additional $197 million for ADAP - the amount identified by treatment experts as needed to allow all states to provide a minimum level of service to those in need.
2. EXTEND "HOLD HARMLESS" PROVISIONS TO FIVE YEARS
We must protect lifesaving HIV care systems from dramatic funding cuts that will put lives at risk - adequate new funding for emerging areas and assurance of continued support for high-prevalence epicenters will mean a reauthorization that everyone can support.
3. REVISE "CORE MEDICAL SERVICES" REQUIREMENT TO ALLOW SERVICES THAT SUPPORT TREATMENT ADHERENCE AND GOOD HEALTH
Housing, food, transportation and legal services are lifesavers - it's hard to stick to your meds if you're homeless, hungry, can't get to the doctor or are in danger of losing your home or kids. We must modify "core medical services" spending requirements to allow spending on supportive services that save lives, including transitional housing, legal assistance, and food/nutrition services.
4. KEEP THE FOCUS ON TREATMENT AND CARE - STRIP TESTING LANGUAGE OUT
We must reject attempts to use Ryan White to redirect CDC prevention funding and cement controversial HIV testing policies. Congress should eliminate the "Early Diagnosis Grant Program" section in current drafts of reauthorization legislation.
Key Provisions Undermining Care for People Living With HIV/AIDS
Congress has cut Ryan White funding by some 25% in real dollars over the past five years. New restrictions and formulas in the Ryan White HIV/AIDS Treatment Modernization Act of 2006 threaten to exacerbate this resource shortage and destabilize life-saving programs across the country. In today's special edition of the Update, we'll try to outline what the AIDS community has recommended and what's important to keep fighting for.
General and ADAP funding shortfalls
The Congressional Black Caucus has estimated that it will take $500 million in additional funding to ensure access to treatment and services everywhere in the nation. Housing Works backed the CBC's call for adequate funding, and the nationwide demand to ensure access and quality in the systems of care in poor & rural areas. But the current version of reauthorization legislation simply doesn't have enough money to provide good access everywhere in the country - and that's unacceptable.
ADAP funding shortfalls
To meet projected need for AIDS-related medications in 2007, the AIDS Drug Assistance Program (ADAP) needs an additional $197 million (that's about 16,000 people needing life-saving medication). The House version adds $70 million to Title II - the only increase in the bill - that could bolster ADAP.
Advocates are pushing policymakers to allow states the flexibility to put these dollars into primary care, support services, and/or their ADAP programs.
But we may have a shot at more than that: Save ADAP, a coalition of AIDS organizations, has found champions in Congress interested in supporting emergency appropriations for the full $197 million in addition to the Title II base. Their advocacy efforts need immediate support from organizations across the country.
Formula follies - what's the "new normal"?
Formula funding has protected PLWHAs in certain localities from losing services in the past but not anymore. Under the current version of the bill, New Jersey, New York, California, Illinois, Ohio, Florida, and Texas stand to lose millions they currently rely on to sustain systems of care for PLWHAs. The bill locks in inadequate levels of funding for five years - mere 3.7% increases per year for Titles I and II (Title III yet to be determined). Humberto Cruz of the New York State AIDS Institute explained, "For five years we will be cutting. We will not have time to heal."
Supplemental funding has maintained adequate ADAP coverage in some states, but that funding is no longer guaranteed. Instead, Title I and Title II supplemental money will mitigate the damage done by other provisions in the bill. This pool must first fulfill the "hold harmless" provision (see below) then alleviate the losses generated by changes in funding formulas. If any money remains - which is doubtful - then the money is distributed based on severe or demonstrated need. This hidden cut threatens critical programs, particularly in areas already facing formula funding cuts.
Local advocates, AIDS service organizations and public health officials in areas facing big losses must begin now to prioritize and plan how they will maintain lifesaving systems of prevention, treatment and care.
Cruel SONI penalizes states for saving lives; "Hold Harmless" could ease the pain
The severity of need index (SONI) method of allocating funds takes into account local expenditures for AIDS services in a cruel manner - it makes states that spend more on lifesaving care eligible for less federal dollars. The perverse SONI scheme creates a negative state match that penalizes local governments scrambling to fill the gaps in federally supported AIDS services.
In current drafts of the bill, SONI does not kick in until the fourth year. The "hold harmless" provision in the bill protects a locality from loss of funds for the first 3 years. Extending the "hold harmless" provision could help mitigate potentially dramatic losses of funding.
Many groups have been advocating for extending the "hold harmless" provision term for up to five years. In last week's House markup, Representative Ed Towns (D-NY) offered a five-year hold harmless amendment that failed by one vote. Any senator could offer a similar amendment this week if Ryan White makes it to the floor of the Senate unattached to other authorization bills.
Harmful "core medical services" language
Current draft language requires states to spend 75% of all expenditures on core medical services narrowly defined to exclude the necessary support services that make access to medication meaningful. People living with HIV/AIDS will lose pantry wagons, housing, transportation, and legal services under the new restriction.
Clinical experience shows that housing, nutrition, transportation and legal services help people living with HIV/AIDS adhere to treatment & prevention programs and stay healthy. It's important to make sure Ryan White funding can be invested where it can do the most good at the local level - and this language could force states and localities to give back money that could be used to save lives. Advocates are calling for report language to reflect a broad range of supportive services including transitional housing, legal assistance, and food/nutrition services.
Harmful "incentive grants" would redirect HIV prevention funding
The recent community compromise statement on reauthorization from leading national AIDS organizations identified the "Early Diagnosis Grant Program" section as one of their top five concerns with the current version of the bill in the House.
This section provides $30 million in "incentive grants" to encourage states to adopt new HIV testing policies, especially mandatory testing for newborns. This testing initiative is tied to specific recommendations that erode patient care, including abandoning written consent and pre-test counseling (a spin-off from the recently released CDC testing guidelines). The current bill would make it difficult if not impossible to modify these guidelines for the next five years, even if the CDC testing guidelines change.
Advocates say the money would be better utilized by the Centers for Disease Control and Prevention (CDC) for prevention programs with the highest risk populations versus being placed as a rider on the Ryan White bill, which is intended to provide care and treatment. CDC funds for HIV prevention programs have been cut at the same time the federal government has failed to achieve their 2005 goal of cutting the number of new infections each year in half. CDC already prioritizes funding for testing initiatives and approaches to reducing mother-to-child transmission through their "Advancing HIV Prevention Initiative."
None of HW 2005 Reauthorization Priorities Met by Current Bill
Last September, Housing Works sought broad community input from across the nation and issued Ryan White reauthorization principles with seven top priorities. As it stands now, reauthorization legislation fails on each and every count.
We called on Congress to provide lifesaving care everywhere, and it hasn't done the job. We asked for a system that would boost poor and rural areas while maintaining care in high-impact urban centers - that's not happening either. Here's a run-through of our priorities and how the current legislation falls short:
* Ensure Universal HIV Treatment Nationwide
Even as it sets off major regional fights over the distribution of resources, the current legislation fails to ensure lifesaving HIV treatment for everyone in the U.S. who needs it. It would continue waiting lists for care in many areas of the country, and might create new waiting lists in areas of the country where care is now available. The AIDS Drug Assistance Program needs to be fully funded.
* Support Adequate Funding Now
What can we say other than at least $500 million per year less than is needed?
* Establish a Standard for HIV Care
We called for high-quality national standards for care, with attention to supports like housing and case management that help folks stick to treatment. The current bill would continue a system that's way short of high quality in too many areas of the nation. The bill needs to implement the quality assurance standards that have been developed in the last six years by Ryan White programs in all titles.
* Coordinate Federal, State and Municipal Investments in HIV Care
Current legislation would actually penalize states and localities for investing in needed HIV care (see SONI below).
* Strengthen Commitment to Supportive Services
Current legislation could actually destabilize the nation's continuum of HIV care and diminish access to social supports like housing and case management and neglects needed services like nutrition and legal aid. It requires grantees to spend three-quarters of funding on medical care, even when local Medicaid programs are strong and Ryan White is needed to fill deadly gaps.
* Require Meaningful Participation of People Living with AIDS and HIV
Giving grantees control over Title I Tier I planning councils and diminishing local participation in priority-setting ignores the important public health lessons of the HIV/AIDS epidemic and will cost not just money but lives. Title I Tier 2 planning councils should be required to have planning councils with real priority setting and resources allocation responsibilities.
* Develop a New Comprehensive Domestic AIDS Response within Five Years
New legislation should sunset the Ryan White legislation and require establishment of a new national program of universal access to prevention, treatment, care and support - the current bill doesn't.
CALL THE U.S. CAPITOL TOLL FREE AT 888-802-1207 AND SPEAK TO YOUR REPRESENTATIVES IN THE HOUSE AND SENATE - TELL THEM TO TAKE FOUR STEPS TO FIX RYAN WHITE REAUTHORIZATION LEGISLATION:
1. EXPAND FUNDING BY $500M TO ENSURE ACCESS TO CARE NATIONWIDE
Stop playing regional politics and get the money we need to care for all Americans living with HIV/AIDS into this bill. We need a total of $500 million in additional funding to eliminate ADAP waiting lists, support areas with emerging epidemics, and protect access and quality in high-prevalence areas. This includes a $70 million increase for Title II base and an additional $197 million for ADAP - the amount identified by treatment experts as needed to allow all states to provide a minimum level of service to those in need.
2. EXTEND "HOLD HARMLESS" PROVISIONS TO FIVE YEARS
We must protect lifesaving HIV care systems from dramatic funding cuts that will put lives at risk - adequate new funding for emerging areas and assurance of continued support for high-prevalence epicenters will mean a reauthorization that everyone can support.
3. REVISE "CORE MEDICAL SERVICES" REQUIREMENT TO ALLOW SERVICES THAT SUPPORT TREATMENT ADHERENCE AND GOOD HEALTH
Housing, food, transportation and legal services are lifesavers - it's hard to stick to your meds if you're homeless, hungry, can't get to the doctor or are in danger of losing your home or kids. We must modify "core medical services" spending requirements to allow spending on supportive services that save lives.
4. KEEP THE FOCUS ON TREATMENT AND CARE - STRIP TESTING LANGUAGE OUT
We must reject attempts to use Ryan White to redirect CDC prevention funding and cement controversial HIV testing policies. Congress should eliminate the "Early Diagnosis Grant Program" section in current drafts of reauthorization legislation.
Housing Works calls on advocates, legislators, and the Bush administration to build support for a consensus reauthorization plan that will ensure lifesaving, quality HIV care to everyone in our nation living with HIV.
( Download a copy of the Housing Works RWCA principles here.)