FASTFAX is available by fax in the 215 and 610 area codes at no cost, or by mail anywhere for $20.00 per year, by calling 215-545-6868, and by E-mail by contacting drfair@critpath.org and type the message SUBSCRIBE in the message section. Sources for some information in this issue include the Philadelphia Inquirer.
TPAC gives priority setting to PWAs
MAPP: 79% of funds go to white AIDS groups
Clinton budgets small AIDS increase
Guidelines for viral load, treatment expected
Web site will collect info on protease failures
TPAC gives priority setting to PWAs
The Philadelphia AIDS Consortium (TPAC), the region's Ryan White Title II Planning Coalition, decided at its February 13th Board of Directors meeting to hand over the responsibility for setting spending priorities for new state AIDS dollars to consumers (people living with HIV/AIDS or the parent/legal guardian of a child living with HIV/AIDS).
The amount of new Ryan White Title II dollars to the region is just over $400,000.
The unprecedented move was proposed by the TPAC Priorities Committee, co-chaired by Alicia Beatty of The Circle of Care and Michael Hinson of The Colours Organization, who reported to the Board that the Priorities Committee unanimously supported the move of priority setting responsibility to the consumers of services who are supposed to be served by those dollars. Also unanimously supporting the move was the TPAC Consumer Caucus.
The plan is to call a region-wide meeting of consumers who will first be given available information about current services and the estimated need for services, as well as what services can be paid for out of Ryan White dollars. Then consumers will engage in a process of prioritizing those areas of spending which they believe are most important.
While the Board has reserved the right to assign specific percentages of money to be spent on a given priority (based on estimated service gaps and the unit cost of a specific service), they have vowed to accept the priority recommendations on which areas will be funded at all with the new money as they are presented by consumers.
There were strong concerns expressed by two Board members representing the Asian/Pacific Islander (API) communities about the fairness of a consumer-only process. According to Richard Liu of AIDS Services in Asian Communities (ASIAC) and Kiyoshi Kuromiya of Critical Path AIDS Project, there are serious culturally-specific barriers for API consumers to participate in such a process, and if the process moved forward there would be no API representation at all for priorities setting.
Board member Jeff Maskovsky commented, "As with all previous priorities setting processes, there exists the possibility that some groups will be under represented or not represented at all. I think it is incumbent upon all Board and community members to get as many consumers as possible to attend the meeting and be represented."
Many Board members also noted that although there are access barriers to overcome, there are access barriers for consumers already in place in a provider-driven process and that a consumer-driven process would still be the best process since consumers are the ones who have direct knowledge of their own needs.
According to Joe Cronauer, TPAC Board President, "This is truly a momentous event. Just a few years ago the thought of PWAs having control over priorities for their own money would not even be imaginable. And today TPAC took a major step forward which no other planning group has ever taken to help empower those we are supposed to serve. No doubt it will take awhile to work out the bugs, but I think this will be a model that others will follow in the future."
TPAC Priorities Committee members said that they will do all that is necessary to work toward fair consumer representation, and that details of the consumer meeting should be available and widely distributed within the week. For more information, call TPAC at 215-985-6200.
MAPP: 79% of funds go to white AIDS groups
An analysis prepared for the independent African American community AIDS planning process says that over 79% of federal AIDS dollars spent in the Philadelphia region is allocated to groups which are defined as "white" groups, according to federal definitions.
The federal government defines a "minority community-based organization" as one which has a board of directors with a majority of people of color, and a majority of people of color in the organization's management and staff.
According to the analysis, prepared for the Minority AIDS Project of Philadelphia and Vicinity by former city AIDS office director David Fair, 79.07% of all federal funding available in the region is allocated to organizations led by whites. This compares to an HIV prevalence rate of 28.8% among whites in the Philadelphia region, according to the U.S. Health Resources and Services Administration (HRSA), which administers federal AIDS care funding.
Only 11.97% of federal funding is allocated to organizations led by African Americans, where the HIV prevalence, 61.10%, is over 850 times that in the white community when compared to the incidence of HIV infection related to the total number of the respective racial populations in the region.
In the Latino community, with an HIV prevalence of 10.10%, 7.94% of the total federal resources are allocated.
In the Asian community, which is projected by HRSA to include 70 individuals with HIV disease in 1997, 1.01% of the funding is allocated. However, the largest portion of this allocation is to a technical, system-wide service, that of data collection for the AIDS Activities Coordinating Office. When this amount is deducted from the Asian portion of the funding, the percentage of funding for Asian service organizations drops to 0.002%.
The report was based on an analysis of detailed AIDS funding information utilized by the Philadelphia HIV Commission in determining its service priorities for AIDS funding for 1997.
The report also noted that of 29 service categories defined as priorities for 1996 HIV/AIDS services in the region, white organizations received the majority of federal funding available in 24 of them. Of the 29, white organizations received all (100%) of the funding available in 16 categories, and in all but two which were allocated more than $100,000.
In 1996, according to the report, white organizations received all (100%) of the funding available from the Ryan White CARE Act in the following categories of service: case management assistants, dental care, home health and long term care services, legal services, Medicaid waiver assessments, medications and nutrition therapy, nutritional counseling, physical therapy, translation and interpretation services, volunteer coordination, evaluation and quality assurance activities, HIV/aids service planning, case management coordination, consumer involvement, and food coordination.
White organizations received over 90% of the funding in the categories of mental health services (96.17%) and primary medical care (90.81%), and over 70% of the funding in three categories: case management (74.05%), emergency financial assistance (74.55%), information and referral services (85.75%), and transportation (76.76%).
African American organizations received the majority of the funding in four categories, one of which is specifically designated for minority services. These are alternative therapies (55.59%); extended case management services (56.64%); day/respite care (65.85%); and minority community capacity building (100%). The analysis noted that "It is significant...that the category of extended case management services was originally developed by the Minority AIDS Project of Philadelphia and Vicinity in 1992 to support neighborhood-based access to HIV services in communities of color, and that the proportion of funding in this category available to minority organizations has decreased from 100% in 1992-1993."
In only one category do Latino organizations receive the largest amount of funding, that of Peer Counseling (87.94%). This category allocated, however, only $78,275 in funding, which is shared by two organizations, one Latino and one white.
The report said that the total amount of 1996 Ryan White CARE Act funding awarded, by race of provider, was $9,988,585.50 to white organizations, $1,512,385.00 to African American organizations, $1,003,592.00 to Latino groups, and $127,406 to Asian groups.
Clinton budgets small AIDS increase
The Clinton Administration has announced that funds for AIDS distributed under the Ryan White CARE Act will increase in 1998 by approximately $40 million compared with 1997.
This brings the total amount allocated for 1998 under Ryan White to $1 billion.
The White House also announced that funding for prevention programs under the Centers for Disease Control and Prevention will increase to $637 million. This means that compared with 1997, the CDC will receive $20 million more for prevention in 1998.
Donna Shalala, HHS secretary, commented that until AIDS drugs and vaccine show an impact on the epidemic, "...our first priority must be prevention."
The Clinton budget plan includes modest funding increases for the Ryan White CARE Act, HIV Prevention at the CDC, AIDS Research at the NIH and the HOPWA program at HUD. While these increases are modest and do not begin to meet the needs of the expanding epidemic, they are substantial increases in comparison to other public health and housing programs.
The AIDS lobbying group AIDS Action said it will go to Capitol Hill to advocate for AIDS funding increases that more adequately address the needs of the epidemic.
The Clinton Budget Proposal calls for the following:
* A $40 million (4%) overall increase in Ryan White funding, with $30 million of the increase equally divided between Titles II & IIIb. The administration assumes $167 million of Title II for ADAP, but proposes no additional ADAP funding for FY 98.
* A $17 million (2.8%) increase in CDC HIV Prevention funding.
* A $38 million (2.6%) increase in NIH AIDS Research to be distributed through a consolidated appropriation by the Office of AIDS Research. NIH Research overall received a 2.6% increase in funding. The NIH increase brings its total budget to $13.1 billion.
The NIH funding request a 2.6% increase, to $1.5 billion, for NIH's Office of AIDS Research.
* A $8 million (4.1%) increase in HOPWA. This increase marks the first time ever that the Administration has requested an increase for HOPWA in its initial budget request. HUD estimates that an additional 10 jurisdictions will be eligible for formula grants in FY 98. HOPWA was the only major housing program to receive an increase in the Clinton budget. The McKinney Homeless Assistance Grant Program -- another major source of housing for PLWA's -- was flat-funded at $823 million.
* A $10 million (less than 1%) increase in the Substance Abuse block grant. Of the 40,000 - 60,000 new HIV infections expected this year, approximately 75% of these infections are related to substance abuse.
* A $22 billion cut over 5 years in federal Medicaid funding. This cut translates into a $15 billion reduction in Disproportionate Share Hospital (D.H.) Payments and a $7 billion reduction by imposing a "cap" or limit on the federal Medicaid payment per beneficiary. Some of the Medicaid savings in the Clinton budget are targeted to restoring Medicaid and SSI eligibility for legal immigrants who were denied these benefits under the welfare reform bill. In addition, Medicaid savings are also utilized to expand coverage for children and to extend Medicaid coverage to SSI and SSDI recipients who return to work. Therefore, only $9 billion of the $22 billion cut in the President's plan is targeted for deficit reduction. The Administration's full Medicaid proposal is not yet available.
* A $68 million increase in the FDA budget, increasing its budget from $996 million to $1,064 million in FY 1998. However, a full $244 million of the funding level assumes the enactment of user fees from medical device manufacturers when they submit medical device applications to the FDA for approval. Legislation to require these user fees has yet to be enacted and is very controversial. In the absence of such legislation, the FDA will experience an actual cut in its funding. This funding reduction could undermine the agency's ability to adequately monitor and evaluate the safety and efficacy of drugs, including new AIDS treatments; which will play into the hands of industry interests and other political opponents who would like to weaken the FDA's authority.
Guidelines for viral load, treatment expected
Two government panels are in the process of developing the first standard guidelines for antiviral therapy and viral load testing for HIV. According to a report in AIDS Alert, the panels will publish their recommendations in the CDC's Morbidity and Mortality Weekly Report later this month.
The first panel, formed by the National Institutes of Health and chaired by Dr. Scott Carpenter of Brown University, is developing basic principles. The job of the second panel, chaired by Dr. Anthony Fauci, director of the National Institute for Allergy and Infectious Diseases, and Dr. John Bartlett of Johns Hopkins University, is to promulgate standards based on these principles.
Dr. Bartlett pointed out that the committees are distinguished from previous ad hoc AIDS committees by the fact that the members plan to continue to meet on a regular basis over the next 3 years to revise the guidelines as needed. He added that revisions to the guidelines for the use of protease inhibitors and viral load, first presented last June by the International AIDS Society based in San Francisco, will be relatively minor. "I think we're looking at modest changes with the guiding principle based on the statement that we ought to kill the virus and do it for as long as we can."
Dr. Bartlett predicts that "...the consensus is going to be that anybody who has a high viral burden needs to be treated, and treated with at least two and possibly three or four drugs. The question is what is too high--is it 500, 5,000, 10,000 or 30,000 [copies per mL]? Everyone has a different way to define high viral burden, so there is some fine tuning that needs to be done."
However, according to the article, the first panel "...has had difficulty reaching consensus on the importance of CD4 count testing in the new treatment scheme, reflecting how much the treatment paradigm has shifted in the past year." Dr. Carpenter believes that there is general agreement that viral testing is needed prior to treatment, 2 or 3 weeks after treatment has begun, and at 3-month intervals thereafter. "But how helpful CD4 count will be after the initial test is still up in the air." Controversy also persists on whether patients with no detectable virus should receive aggressive antiretroviral treatment.
NY begins newborn HIV testing
In the first such program in the United States, hospitals in New York have begun open mandatory testing of all newborns for HIV.
The state was already conducting anonymous HIV tests on infants for statistical purposes, but on Feb. 1, hospitals began mandatory disclosure of the results.
Under the new policy, hospitals are required to track down and counsel mothers on their HIV status weeks after they leave the hospital.
"Certainly this is a very charged issue and an extraordinary undertaking, politically and as a public health program," Dr. Barbara DeBuono, the state health commissioner, told the Times. "It is being watched very closely by other states and by the (Centers for Disease Control and Prevention) to see if it has any significant impact."
HIV testing has been controversial because it reveals not a baby's HIV status but the mother's, through the presence or absence of her antibodies in the baby's blood. One in four HIV newborns exposed to HIV in the womb becomes infected. HIV cannot be detected at birth.
Most health care professionals favor HIV testing of pregnant women because early treatment can help prevent transmission of the virus to the baby.
Web site will collect info on protease failures
A Web site for both users and prescribers of protease inhibitors has been set up to collect reports of failures of these drugs, according to AIDS Treatment News.
"We are collecting stories from people who have failed protease inhibitors, or who have had unusual responses to the drugs," say the project's sponsors. "Unusual responses" would include the following:
-- People whose viral loads did not change after starting combination therapy. This includes people who eventually saw decreases, but only after more than two months on therapy.
-- People whose viral loads decreased in response to treatment, but who experienced a rebound in viral load within the first six months of therapy.
-- People whose viral loads increased when they started therapy.
-- People whose viral loads remained high but whose T-cell counts seemed to increase anyway.
Users who wish to report serious side effects are also welcome to report their experiences, although this is not a focus of this project.
For more information, contact Rick Loftus, 415/695-3818, ."
The Web address for this project is: http://www.netcom.com/~protease.
To obtain a weekly email version of fastfax, contact with the message: "subscribe".