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Issue #224: April 9, 1999
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 and type the message SUBSCRIBE in the message section. Sources for some articles in this issue include Kaiser Daily HIV/AIDS Report, Philadelphia Daily News, Philadelphia Inquirer, Reuters.
In This Issue:
AIDS Fund reduces most Walk grants
Guvs back off on block grant proposal
Minorities comprise 82% of new city AIDS cases while rates decline
Medicaid must pay for wasting drug: HCFA
Marlton Court still accepting applications
AIDS Fund reduces most Walk grants
After raising less money than last year, Philadelphia's AIDS Fund, the sponsor of the annual AIDS Walk, has announced that it has had to reduce the amount of money it will award to 44 of the 57 groups supported this year.
The largest funding reduction hit the Maternity Care Coalition, which lost 75% of the funding it had received in 1998. Most groups had their awards reduced by between 30 and 40%.
We The People's grant, which was $42,000 last year, dropped to $26,112, a reduction of 38%.
Other groups suffering major reductions included the Drenk Mental Health Center in South Jersey, which lost 51% of last year's grant of $10,000, Planned Parenthood in Philadelphia, which lost 67% of last year's funding, and the Pennsylvania School for the Deaf, which lost half of last year's $4,000 grant.
This year's AIDS Walk raised $1,000,478 for distribution to beneficiaries, according to a listing released by the AIDS Fund. Last year, the group donated $1,250,500 to its beneficiary groups.
According to Jeanne Marks, Vice President of the AIDS Fund and chair of its Allocations Committee, an additional $500,000 was raised at the 1998 Walk. This money is apparently set aside for operating expenses of the organization.
Concerned that the walk was garnering a dwindling amount of pledges in recent years, the AIDS Fund this year offered an "incentive" plan, in which organizations that participated would get a 75% return on the dollars they raised through their own "beneficiary teams" if the Walk raised more than $1 million.
Marks said that the incentive plan was an important part of the 1998 fundraising campaign, with $246,000 being raised by beneficiary teams organized by groups receiving Fund money.
By initiating the bonus program, "the AIDS Fund sought to proactively address the national pattern of decline in AIDS Walk fundraising success by offering a direct (rather than indirect) benefit to participating organizations."
The bonus strategy worked, Marks said. "64% of the participating beneficiary teams raised more money in the 1998 AIDS Walk than they did the prior year," she told fastfax, "an improvement over the national trend of declining AIDS Walk fundraising efforts."
Since the Walk raised a total of $1.1 million, the AIDS Fund board set aside $185,151 of the funds raised to target to specific groups who qualified for the bonus program. It is this money that makes up a large proportion of the funding cuts suffered by other groups.
As might be expected, groups with strong existing lists of benefactors and others which drew on school and religious communities did well in the incentive program, while smaller groups and those comprised mostly of poor or minority people did less well.
The largest of the new incentive grants went to a relatively new group, Siloam Ministries, which provides emotional and practical support to people with HIV/AIDS. Siloam's grant jumped from $15,000 in 1998 to $22,281 in 1999, a 49% increase earned largely through a $16,281 payment from the incentive program.
The second largest incentive payment in terms of cash went to ActionAIDS, which for over ten years has had the most effective fundraising programs in the state. ActionAIDS received $14,613 of the incentive funds, but still lost about 18% of its 1998 grant, for a total this year of $74,113. The ActionAIDS grant remains the largest AIDS Fund grant, however.
The bonus program had its greatest proportional impact on Jewish Family Services, which gained a 79% increase in its grant (to $17,850 from $10,000), almost $13,000 of which came from the incentive process.
PWA coalitions and minority groups suffered most from the incentive program. We The People received only $612 from the incentive effort, and WISDOM, the only organized group of women living with HIV/AIDS, received only $329.
Other minority groups which fared poorly in the incentive process included AIDS Services in Asian Communities ($557), Asociacion de Puertorriquenos en Marcha (APM, $756), CATA, a farmworkers group ($420), La Comunidad Hispana ($687), and the Youth Outreach AIDS Community Awareness Program ($644). Of these groups, only APM saw an increase in its funding this year, from $10,000 in 1998 to $10,533 in 1999.
Congreso de Latinos Unidos, the largest AIDS service organization in the Philadelphia region specifically targeting Puerto Ricans and Latinos, suffered a 34% cut in its 1999 walk grant, from $35,000 to $23,032, even after receiving $1,782 from the incentive pool.
Most other groups received incentives in the $2-7,000 range.
Minority organizations have historically fared poorly in the competition for AIDS Fund dollars. This year, only 20% of the Fund's grants went to historically minority organizations, and the average grants for minority organizations are over 25% lower than for groups which have not been identified with minority communities ($13,622 as compared to $18,196). The average walk grant across the board is $17,250.
Groups which provide direct personal and practical supports to people with AIDS - as opposed to social service and AIDS education groups - had mixed results in this year's grant awards. Calcutta House, the only AIDS personal care home in the region, suffered a cut of 31%; We The People's funding reduction was 38%,and WISDOM's was 33%. Wissahickon Hospice had a 27% cutback, MANNA a 14% cutback, Camp YMCA a 40% cut, and the Visiting Nurses Association suffered a 46% cut in its annual grant.
Some others did well through the bonus program, however. Keystone Hospice, the new AIDS hospice in Montgomery County, got an 8% increase in its grant to $21,641; St. Mary's Respite Center received a 15% increase, to $13,803.
Several new groups were added to the walk's list of beneficiaries this year as well. Camden's AIDS Health Education Center received its first grant, of $4,250, and Unity, Inc., a black gay organization, received its first $10,000 grant. The Kennedy Hospital Systems in South Jersey also received its initial grant, of $4,750.
Concern at applying formulas
Some AIDS organizations have expressed concern that the move toward using AIDS Walk funds to benefit most the organizations that can turn out participants may lead the AIDS Fund to stray from its main purpose, which has been helping the people with HIV/AIDS most in need.
While continuing to express support for the Walk and other fundraising activities of the AIDS Fund, Robert Capone, executive director of We The People, said that applying the incentive formula this year has penalized groups that are based primarily among low-income people or people with AIDS themselves.
"We simply don't have the mailing list that groups with hired fundraisers have, or the wealth of connections to schools and religious communities that traditional social service agencies can draw on for pledges," Capone said. "Yet we serve over 1000 of the most desperately poor and needy people with HIV every month at our Life Center, with housing, food, and practical support. We'll never fare well in a competition with groups that have the money and the time to reach out to students and churchgoers simply to raise money, and while I understand that we need to look at incentives, we also need to make sure that the people who need the help the most don't get left out just because they're poor."
Capone noted that the reviewers of We The People's proposal cited their lack of diversity in funding as a "weakness" of the agency. "When I was told this, I responded that if we had the ability to raise money on our own we wouldn't need to apply to them for funding. I thought the whole purpose of the AIDS Fund was to help the most needy persons living with HIV/AIDS.
"If the AIDS Fund really wants to have the greatest impact then maybe they should consider an agency with diversified funding as one who needs less of their help," Capone said. "This would allow them to shift dollars to where its most needed, to help the agencies who struggle every day to help their own communities."
"I feel that if a group has enough resources to pay the salary of a development director to raise money, then they don't need the AIDS Fund and shouldn't even apply. I don't begrudge those agencies who have the ability to raise money, I just think that the AIDS Fund should consider acting as the development director for those who can't afford one, getting the dollars it raises to where its most needed."
Marks told fastfax that the AIDS Fund believes that the bonus pool plan, which she called a "pledge-a-thon" vehicle, "does not depend on the existence of a wealthy donor base."
"Some of the more successful incentive program teams were small, did not have access to a wealthy donor base, and still succeeded in increasing the dollars raised," she said. "These teams, as well as others, deserved to receive direct financial benefits for their efforts. We wanted to empower smaller groups and build their fundraising capacity so that they can apply these principles to their ongoing agency fundraising efforts. We believe the incentive program achieved these goals."
Marks said that although the AIDS Fund board had reserved the right to ignore the bonus pool and put all of the money raised into the general allocations fund, it decided not to do so because it thought the incentive plan had been a success. She noted that the board did use about $60,000 of the bonus money to support general fund allocations, however.
AIDS supporters in the African American and Latino communities, generally poor themselves, have also been less likely to provide cash support to AIDS efforts, instead concentrating on volunteer and in-kind contributions. In the past, many in the minority community have also been reluctant to support the AIDS Walk since most of the money raised does not go to organizations in their own communities, which have over 70% of living people with AIDS.
Additionally, this year the AIDS Fund denied a funding request from BEBASHI, the oldest and largest AIDS case management agency in the African American community.
Marks had no direct comment on the racial implications of the AIDS Fund's allocations. "We believe the competitive review process is fair and our hard work and care has contributed to our beneficiaries' ability to respond quickly to the changing needs and challenging of fighting HIV disease in communities throughout the region," she said.
The National Governors Association (NGA) has backed away from a resolution it passed at its winter meeting earlier this year calling for the "block" granting of Title I Ryan White CARE Act funds to the states, rather than making direct grants to individual cities and regions, according to the Kaiser Dailey HIV/AIDS Report.
If the Clinton Administration agrees to the proposal, all Ryan White Care Act funding which currently is directly awarded to the Philadelphia region - over $16 million this year - would be given instead to the state health department in Harrisburg.
The federal government already "block grants" funds for welfare, mental health and substance abuse services to the states, as well as other health and human services programs. Funds for AIDS Drug Assistance Programs and funding available under Title II of the Ryan White Act are already distributed to states according to a block grant formula.
"There is a lot of misinformation and rumors have gotten started," said Matt Salo, senior policy analyst at NGA. "People are saying that NGA is pushing to block grant Ryan White funds, but that's simply not true," he added.
Two NGA policy papers adopted at the winter meeting of the group earlier this year strongly encourage the federal government to use block grants for AIDS and other services.
"The Governors call on the federal government to work in partnership with states and the private sector to reduce the costs of treatment and to maintain funding that adequately reflects the growing cost of [AIDS] drug therapies," one statement reads. "Funds provided through the [Ryan White] act should be awarded through states to ensure the coordination of efforts at the state and local levels."
"Block grants can provide a simpler, more rational, and more flexible delivery system for federal aid. Administrative savings from consolidation at the federal and state level will be used by states to enhance services," another statement said.
A report by Amy Paulson in the April 8th issue of the Report said that the NGA maintains that the policy language, "which has some AIDS advocates alarmed based on the governors' successful efforts at block granting welfare and education programs," is only meant to call for a streamlining of the funding process.
"It's pretty vague, it's not asking for a block grant, it's not a money grab from the cities or an attempt to usurp power from the cities," Salo told the Report. "If you look at the AIDS policy as a whole, or any of our policies, it's pretty consistent with our general philosophy that money that comes into the state should go through the governor. Not because the governor wants to take the money and go spend it on roads, but if there is $10 million from Ryan White coming into 'X' city, the governor needs to know this so that other funds can be redirected to other cities in need, or can be used in a complementing way," he explained. "It's really nothing more complicated or sinister than that."
The NGA has no present plans to push for legislation that would implement the proposal, Salo said. "We haven't sent this proposal to anyone ... And we're not banging on anyone's doors to see that this happens."
While unlikely to be accepted this year, the governors' proposal is apt to be more popular with a Republican president, should one be elected in the 2000 elections. Republicans have generally been more favorable to block grants, since most major cities have Democratic mayors while most state houses are under Republican control.
In Pennsylvania, the proposal would mean that the Ridge Administration would be in the position of determining how much Title I funding was made available to the Philadelphia area, and what services it could be spent on. The state could choose either to continue to use the Title I planning council - the Philadelphia EMA HIV Commission - to set priorities for the funds, use the Title II council - The Philadelphia AIDS Consortium - or set up a new mechanism for prioritizing and distributing the funds.
State block grants would also eliminate the complicated planning process that grows out of the Title I formula of distributing funds by metropolitan region. Philadelphia's metropolitan region stretches over nine counties in two states, Pennsylvania and New Jersey, and there has historically been great tension between the Pennsylvania and New Jersey counties, as well as between urban centers like Philadelphia and Camden and more rural suburban counties.
Because the incidence of AIDS in the New Jersey counties is also lower than in the Pennsylvania sector of the region, a state block grant approach might actually increase Title I funding for the Philadelphia area, since current Title I funding levels are to some extent "watered down" because the current Title I formula, based on population as well as AIDS cases, includes less populated and less AIDS-affected counties as part of the Philadelphia area calculation.
Most local AIDS advocates as well as local health departments in the five-county Philadelphia metropolitan region have been severely critical of AIDS policy in Harrisburg, especially with regard to coordination between the Title I and II planning councils and the Ridge Administration's HealthChoices Medicaid managed care program, which most believe has put new obstacles in the way of access to quality primary care for people with HIV disease.
Minorities comprise 82% of new city AIDS cases while rates decline
Citing the "impact of advancements in medical for HIV" as "profoundly" impacting on the rate of AIDS case reports in Philadelphia, the city's AIDS Activities Coordinating Office (AACO) has announced that for the first time since 1993, the incidence of AIDS case reports has decreased across all genders, ages, racial and ethnic groups, and modes of transmission. The decline was also seen in all nine counties of the Philadelphia metropolitan area, including the five southeastern Pennsylvania counties and the four southernmost New Jersey counties.
An analysis of AIDS incidence is included in the AIDS Surveillance Quarterly Update reporting cases identified through December 31, 1998, and formally released this month.
The AACO report notes that with fewer people with HIV progressing to AIDS, "AIDS incidence is now less reflective of trends in the HIV epidemic."
"AIDS incidence increasingly represents a subpopulation of the HIV infected who either present late in the course of their disease due to barriers to testing or access to care, and those for whom treatment has failed," the report notes. The report says that the AIDS incidence data shows that some communities are benefitting more from treatment advances than others. "Stronger efforts to minimize barriers to testing and improve access to care are still necessary, specifically among women, African Americans, and those with intravenous drug use and heterosexual contact as a risk for HIV/AIDS."
The city reported 909 cases for 1998, down from 1,191 in 1997 and 1,708 in 1993, the peak year.
Joseph Cronauer, AACO co-director, told the Philadelphia Inquirer that "We have no evidence that HIV-infection rates are declining, but we have fewer people progressing to AIDS and fewer people dying of AIDS. The way it looks now, HIV is turning into a chronic but manageable disease."
"The decline in AIDS cases is not as pronounced in communities of color," Cronauer said, noting that AACO is targeting communities of color "where barriers to testing and care have proven toughest," with new AIDS funds awarded to the city under the Ryan White CARE Act this year.
Philadelphia accounts for about 75% of Pennsylvania's AIDS cases, so the Philadelphia decline will probably be reflected in statewide numbers as well, according to Bruce Flannery, executive director of the Pennsylvania Coalition of AIDS Services Organization. "If Philadelphia has seen a drop across all groups, I would indeed think there would be a drop for all groups statewide,' Flannery told the Philadelphia Daily News. "My concern, however, is how accessible care is in some parts of the state which have fewer medical services."
The AACO report confirms the claims of African American AIDS advocates that while the epidemic is clearly slowing across the board, the reduction is less pronounced among blacks in the region. Since 1993, AIDS case reports among African Americans has declined by 36%, while the decline among whites is 68% and among Latinos, 47%.
In 1998, 70% of all AIDS cases reported were among African Americans, and 12% among Latinos. Less than 1% of new cases were reported among Asians, according to AACO.
While AIDS case reports among men who have sex with men (MSM) continues a steep decline (34% in 1998 as compared to 1997), rates among African American MSM are declining at a slower rate than among white MSM. The rate among black MSM has declined by 60%, while among white MSM the reduction is 75%.
AACO believes that the gap between white and black MSM is decreasing, however. In a comparison between 1998 and 1997 numbers, AIDS incidence decreased by 39% among white MSM and by 33% among African American MSM.
Males represent almost 75% of reported AIDS cases in 1998, but the reported 674 cases in men represent a 53% reduction since male cases peaked in 1993. "Although women represent a smaller proportion of the AIDS burden, progress has not been as significant," the AACO report said, with cases among women declining in 1998 only 17% from the 1993 figure. AACO said that "women who use intravenous drugs and have heterosexual contacts represent the highest proportion of women developing AIDS (47.3%)."
Injection drug users continue to dominate new AIDS cases, according to the report, but cases reported declined by 20% in 1998 from 1997. Overall, there has been a 34% reduction in reported AIDS cases among IDUs since 1993. Cases reported among IDUs who are men who have sex with men have declined more rapidly, according to AACO.
AACO noted that "there continues to be differences in the importance of different modes of transmission across racial lines. Among whites, MSM continues to be the strongest risk factor for the development of AIDS, and within MSM, African Americans comprise 54% of all MSM cases. For African Americans and Hispanics, IDU is the most important risk factor for the development of AIDS."
AACO said that low CD4 counts continues to be the primary indicator that leads to an AIDS diagnosis.
In an interview with the Daily News, Nurit Shein, executive director of Philadelphia Community Health Alternatives, warned that the "downward trend may be deceptive."
She said that "there may be an increase in a few years because not as many people are being tested." She said, "There is a certain complacency in the general population regarding HIV. Because it is being perceived as a manageable disease, fewer people are coming to be tested and more people are learning their status through an emergency." PCHA is the largest HIV testing program in the region.
Medicaid must pay for wasting drug: HCFA
The Health Care Finance Administration (HCFA) has mandated that the state of Texas, as well as all other states, offer Medicaid reimbursement for Serostim, a recombinant human growth hormone (r-HGH) used to treat AIDS wasting, according to a press release from the National Association for People with AIDS (NAPWA).
This reflects a reversal of a previous statement in which HCFA allowed Serostim to be classified as drug for cosmetic weight gain, giving states the option of refusing Medicaid coverage.
Section 1927 of the US Social Security Act allows states to deny Medicaid reimbursement for products that are primarily cosmetic, and products used only for weight loss or weight gain come under this category. The state of Texas was therefore allowed to deny payment of Serostim for AIDS wasting using this definition.
However, HCFA has now acknowledged the drug's efficacy in treating cachexia, a major contributor to mortality in AIDS patients. "Serostim has the ability to reverse this underlying metabolic derangement," Dr. Nancy Erickson of the University of Texas Medical School commented in the statement. "No one knowledgeable about this aspect of the disease could consider a drug like Serostim to be merely 'cosmetic,'" she continued.
"HCFA's mandate for the Medicaid reimbursement of Serostim ensures that all AIDS patients with wasting will receive the same access to Serostim no matter where they live," Cornelius Baker, executive director of the Washington, DC-based advocacy group added. "Anything less would be cruel and unjust."
The CDC (Centers for Disease Control and Prevention) defines the wasting syndrome as involuntary weight loss of more than 10% from baseline weight in the absence of a concurrent illness that could explain the findings. In fact, the physical signs of AIDS wasting, severe weight loss and muscle atrophy, can sometimes be masked by the increased weight - primarily fat, rather than lean body muscle mass - that develops during protease inhibitor treatment. New studies have shown that approximately 15% - 25% of patients on optimal protease inhibitor therapy still suffer from the loss of vital body cell mass, a condition that is independent of the level of HIV virus and one that can ultimately lead to death. As an anabolic (protein building) and anticatabolic (protein sparing) agent, Serostim effectively increases lean body mass while causing the body to appropriately use fat stores.
Serostim received FDA approval in 1996 and was granted Orphan Drug status; however, a large part of the AIDS population was still without access to the drug. Texas, with approximately 20,000 people with HIV and the fourth largest HIV population in the US, refused to cover the cost of Serostim for the management of AIDS wasting. The state's decision to deny the drug affected approximately 5,000 people in Texas who suffer from AIDS wasting.
The refusal by Texas to pay for Serostim was based on a loophole in the US Social Security Act, the set of laws that, among other regulations governing Medicaid, dictates how states are to manage the distribution of Federal funds for health care benefits. Section 1927 of the act provides states with a mechanism for denying reimbursement for products with primarily "cosmetic" outcomes. Included in this group are products that are used for the sole purpose of gaining or losing weight.
In late 1997, Texas asked HCFA to render a position on whether its Medicaid programs could deny reimbursement for Serostim under Section 1927. HCFA, in turn, responded to the situation by saying the state could reasonably assume, based on the data in Serostim's NDA, that the product was solely a weight gain drug. Texas took HCFA's interpretation as evidence against the need to cover Serostim, and refused Medicaid reimbursement.
Baker says, "That decision was an insult to people with AIDS that could have led to hundreds of needless deaths. We are committed to making sure that every person with AIDS has access to life saving drugs."
NAPWA, in concert with Serono Laboratories, patient advocates, political leaders, and other sympathetic agencies embarked on what would become an almost year-long campaign to reverse the HCFA decision and convince Texas to cover Serostim.
The final push that convinced HCFA to reverse its interpretation of Section 1927 of the Social Security Act was a combined appeal to the FDA for help from many different entities with many voices all speaking out in support of Serostim. A letter to HCFA from the FDA supported the role of Serostim as a therapeutic product, as opposed to a product used for weight gain. In the letter, the FDA reminded HCFA that, "Serostim is approved for the treatment of AIDS wasting or cachexia, which is associated with increased morbidity and mortality."
In February 1999, HCFA stated that, "In light of further information provided by the Food and Drug Administration, we have decided to change our policy with respect to Serostim." Terje Anderson, NAPWA's Deputy Executive Director for Policy, says, "This is a major achievement, and it's one that has come about through the combined efforts of AIDS advocates, patients, political leaders, and many different people speaking out for a cause in which they believe. Never think of yourself as one voice, alone. In chorus, together, we can be heard even in Washington. One voice, one truth echoed many times over can right an injustice. We can make a difference."
The Midnight Cowboy Project of the Gay and Lesbian Latino AIDS Education Initiative (GALAEI) is seeking a street outreach/risk reduction specialist for its Midnight Cowboy street outreach project.
The responsibilities of the position include identifying individuals with HIV/AIDS or individuals at risk for HIV/AIDS and linking them into a system of care which addresses their HIV/AIDS related needs through referrals. General duties include assessment of clients risk for HIV/AIDS and appropriate interventions through on site education, counseling, & referral to appropriate services.
The position pays $12 per hour but does not include health benefits.
For more information, contact GALAEI at 1233 Locust Street, 3rd Floor, Philadelphia, PA 19107, or call 215-985-3382.
Marlton Court applications still available
Applications for Marlton Court, the new 25-unit apartment building in the city's Parkside section to be opened by We The People in May, are still available, according to WTP executive director Rob Capone.
Applicants need to present proof of income and HIV status at the time of application. Individuals with HIV whose annual income is $19,000 or less are eligible to apply. Monthly rent is $200 plus utilities. The program is not available to people who carry housing vouchers from the AIDS Activities Coordinating Office.
For more information, call 215-545-6868 or visit the Life Center at 425 South Broad Street.
WTP Plans Bowling Party April 25th
We The People will sponsor a bowling party for people with HIV/AIDS, their friends and families on Sunday, April 25th, from 1:00 to 6:00 p.m. at St. Monica's Lanes, located at 16th and Shunk Streets in South Philadelphia.
Tickets, which are $8, are available at We The People's Life Center at 425 South Broad Street or by phone at 215-545-6868. A raffle drawing offering cash prizes up to $150 and other gifts will also be held, with tickets for the drawing available at $1.00 each.
For more information, call 215-545-6868.
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