Minority AIDS groups call for boycott, protests of AIDS Ride
CARE Act reauthorized; HIV testing of infants included
PWAs to enter HealthChoices by July '97
HIV specialists call for evaluation within managed care
Delavirdine available through expanded access program
Antivirals have limited benefit in extending life, study says
Minority AIDS groups call for boycott, protests of AIDS Ride
A citywide coalition of community-based organizations, legislators and religious leaders will call for a boycott of AIDS Ride '96, at a press conference scheduled for later this week.
Led by the Minority AIDS Coalition of Philadelphia and Vicinity, the coalition will announce a series of actions aimed at highlighting what they call the "a racist effort to take advantage of the suffering of poor people and people of color to enrich a few people and a few organizations with little concern about our communities."
The AIDS Ride, to take place in mid-June, involves a bike ride from Philadelphia to Washington, D.C., by several hundred riders garnering pledges from friends and corporations. Officials from the AIDS Ride organization have estimated that as much as $3-5 million may be raised at the event.
Local beneficiaries of the event are ActionAIDS, the AIDS Task Force of Philadelphia/Philadelphia Community Health Alternatives, and the AIDS Information Network. Each of the organizations has been criticized for several years for their failure to employ people of color in management or leadership positions, despite the fact that most of their clientele is African American or Latino. The organizations have also been blamed in the past for their roles in allocating AIDS funding through the Philadelphia AIDS Consortium, which many minority advocates believe has showed favoritism to the three organizations and bias against AIDS efforts led by people of color.
While 80% of new AIDS cases in Philadelphia have occurred among people of color in the past two years, less than 20% of AIDS funding is allocated to organizations based in minority communities.
James Roberts, executive director of the Minority AIDS Project of Philadelphia, the AIDS service arm of the Greater Philadelphia Urban Affairs Coalition, said this week that his organization had been attempting to join in the AIDS Ride benefit since last summer, but was consistently put off or ignored by both local Ride planners and national Ride organizer Daniel Pollota. Pollota, who is rumored to make $300,000 personally from each of the several Ride events planned across the country, would not return phone calls for comment on this report.
Sources at Gay Men's Health Crisis in New York, which criticized the recent New York-to-Boston Ride, said that as much as 40% of the proceeds from the Ride event go to administrative costs and profit for the Ride organizers. They said that most bikers participating in the event are unaware that the event is a profitable venture for the national Ride organizers as well as a charitable event for selected AIDS organizations.
At this week's press conference, numerous members of the state and city Legislative Black Caucus, members of the black clergy, and other community leaders, will announce a campaign to ask for a boycott of the Philadelphia-to-DC Ride as well as other activities aimed at raising public consciousness on the event. In addition to the boycott, the coalition will announce a leafletting campaign at local biking events and organizations; informational picketing at local businesses and organizations advertising the Ride through posters and brochures; and a "die-in" at the Ride itself to force the bikers to ride through a mass of people with AIDS as the ride begins.
Members of the Black Tavern Owners Association of Philadelphia will also participate in the press conference, calling for actions to highlight the role that Tanqueray, a liquor company, has played in sponsoring the Ride event.
Coalition members will ask that bikers and other contributors instead make their donations directly to AIDS service organizations based in the black and Latino communities where the epidemic has hit the hardest.
In a related matter, Roberts has sent a letter to From All Walks of Life director Eric Wichner criticizing that organization's decision to endorse the AIDS Ride and help with the distribution of about 25% of the Ride proceeds to other AIDS organizations.
"The AIDS Walk is supposed to be held above petty prejudices and greed," Roberts wrote. He said that FAWOL's sensitivity to minority concerns in its funding allocations last year "created the expectation in me and many other people of color that there was at least one white-run organization that was willing to bridge the racial divide." Roberts said that FAWOL's "silence about the injustice" of the Ride's exclusion of minority participation is "most disturbing."
In his letter, Roberts said that "FAWOL's participation in an important fundraising event that excludes...one of the largest minority-run AIDS service organizations in the nation as an equal partner suggests to me that people of color would do well to bypass this year's AIDS Walk and devote our resources to efforts that are inclusive and more sympathetic to our need to save lives in communities of color."
The new version of the Ryan White Act sets new rules about conflicts of interest in local AIDS planning councils and requires an increased proportion of AIDS funding to be directed to services for women and children. The Act also sets an overall cap of 10% of overhead and administrative costs of agencies funded through the program.
Under a compromise on the controversial issue of testing infants, the secretary of health and human services has to determine by September 1998 if mandatory HIV testing of newborns has become routine in the United States.
If it has, states would have until March 2000 to show they had cut the rate of new AIDS cases resulting from perinatal transmission at least by half since 1993. As an alternative, states could show that at least 95 percent of women receiving prenatal care had been tested for the virus.
States that did not meet either test would have to begin mandatory testing of newborns. States that did not comply with the new testing requirements would lose funding under the act.
Many states now conduct anonymous tests of newborns. More than a million Americans are infected with HIV. The Centers for Disease Control and Prevention has recommended that doctors counsel pregnant women to be tested.
Under the new Ryan White Act, the formula for determining how much money is allocated to each region has been changed to tie the funding more directly to the number of people currently living with AIDS. Previously, cumulative case counts were given greater weight, meaning that cities and regions with growing numbers of new AIDS cases were sometimes penalized while cities which are not seeing fast rates of growth, such as San Francisco, were given preference because they had been among the earliest to experience the AIDS epidemic.
Under the new formula, while cities in the "first wave" of the AIDS epidemic may get less money in coming years, no city is expected to lose more than 5% of its current funding level. "Supplemental" funding will be utilized to guarantee that funding is not reduced more than 5%. States -- which receive Ryan White funding under Title II of the Act -- will also be protected from losing more than 5% of their current funding levels.
The new CARE Act also responds to criticism, especially in Philadelphia, that funding decisions were influenced by conflicts of interests built in to local planning councils. To avoid conflict of interest Title I Planning Councils are, under the new Act, prohibited from selecting subgrantees, but they can make recommendations on how priorities are to be met. They are also required to have in place conflict of interest standards for its members, and are prohibited from being chaired solely by the grantee (in Philadelphia, the city health department), or an employee of the grantee.
Planning Councils such as Philadelphia's HIV Commission are also required to develop policies (to be reviewed by HRSA and included in the grantees application for Title I funds) for resolving disputes, responding to grievances, and minimizing and managing conflicts of interests. The reauthorized Ryan White Act also requires the HHS Secretary to review the current status of state drug reimbursement programs and assess barriers to the expanded availability of HIV-related drugs and to require states to document the progress made in making those treatments available. Since Pennsylvania does not utilize Ryan White CARE Act funding for its Special Pharmaceuticals Benefits Program, it was unclear at press time whether this provision could be applied in the Commonwealth.
In a new provision, the Act sets a cap of 10% on the total cost of adminstrative and overhead expenses for organizations funded by Ryan White. This cap is an aggregate cap on total funds distributed to all organizations. This means that an individual organization is not limited by the 10% cap but the total amount spent on administrative costs by all subgrantees may not exceed 10% of the total amount awarded to all subgrantees by the grantee.
Additionally, cities and states receiving Ryan White funding are required to utilize a portion of their funds equal to the ratio of women, infants, and children with AIDS to the entire population with AIDS to provide health and support services to women, infants and children. These services may include but are not limited to treatments to prevent the perinatal transmission of HIV. In Philadelphia, about 17% of reported AIDS cases have occurred among women and children.
Families with children will be required to join the plans on November 1st of this year. People covered by Social Security Supplemental Income (SSI) and other disability plans will be phased in to the plan next July.
The managed care plan covers Bucks, Chester, Delaware, Montgomery and Philadelphia counties, and eventually is expected to be extended throughout the state.
According to the "request for proposals" (RFP) issued last week by the state Department of Public Welfare soliciting managed care organizations to offer health services to the poor and disabled through the revamped Medical Assistance program, all individuals and families eligible for Medical Assistance will be required to choose an HMO for their health care from a list of approved companies to be selected by DPW this summer. People who are currently enrolled in a Medicaid managed care plan will have the option of remaining with their current company, or may select a new plan; those who do no choose will be randomly assigned by computer to an HMO.
The RFP issued last week differs little from the draft RFP released by DPW in March, which was severely criticized by many PWAs and their advocates for lack of sensitivity to the special needs of people living with HIV disease. Advocates asked the state to place new conditions on AIDS care provided under the managed care system, including requiring a specific medical standard of care; allowing people with AIDS to choose infectious disease specialists as their primary care physicians; allowing easier access to "out-of-network" specialty services, since managed care organizations may not always have the specialist care that PWAs need available; and requiring expedited procedures for people with life-threatening diseases to avert the long delays in accessing care that have become common in existing HMO systems.
The new RFP requires each approved HMO to guarantee that it has sufficient provider participation to assure appropriate care for people with HIV/AIDS, but does not set specific criteria for how that level of appropriateness will be determined. The RFP also states that DPW will monitor plan performance monthly to determine if any access problems have developed.
The implementation of HealthChoices for people with HIV/AIDS next summer may have a significant impact on how HIV/AIDS services are funded in the region. HealthChoices companies will be required to provide specialized AIDS case management services to their participants, according to the standards currently in use in licensing "independent" case managers through the DPW's "targeted AIDS case management" program. HMOs will also be required to guarantee services currently offered under the Medicaid "home and community based waiver" program, which offers a variety of home health and hospice services for people with AIDS.
Since the majority of people living with HIV/AIDS in the region are covered for their health insurance through Medicaid, the requirement that Medicaid HMOs have their own AIDS case managers may mean that funding for AIDS case management currently provided under federal, state and city direct grants may be able to be shifted to HealthChoices reimbursement.
Additionally, most primary medical care services for people with HIV/AIDS are eligible for reimbursement under the HealthChoices system.
The Philadelphia HIV Commission, struggling to cut almost 20% from federally-funded AIDS service programs in recent weeks as a result of a reduction in Ryan White CARE Act funding for the region, has requested the city health department to shift as much AIDS care as possible to other reimbursement sources. With the advent of HealthChoices next year, the impact of Medicaid managed care reimbursement will need to be taken into account in developing funding priorities for the 1997 Ryan White CARE Act allocation.
HIV specialists call for evaluation within managed care
Meanwhile, in San Francisco, a group of HIV care specialists "...is putting together a system to measure the performance of HMOs" and will "provide for the first time an evaluation of how HIV-positive patients fare under managed care," according to a report in AIDS Alert.
"This performance review is a way to provide a mechanism for consumers to make an informed choice," Tom Mitchell, program director of Community Consortium in San Francisco, commented. "Right now there is no objective review for consumers that is HIV-focused, and it is difficult for them to be able to distinguish among the various managed care plans."
Community Consortium, an association of over 200 HIV healthcare providers in the Bay area, recently established a prototype for the basic elements of HIV care. The group has asked HMOs to adopt them. The criteria include monitoring CD4 cells and taking a history of allergies and drug reactions, screening for TB, syphilis, cytomegalovirus and cervical cancer, providing adult immunizations and vaccinations and offering prophylaxis for opportunistic infections.
The first HMO to adopt the criteria is the country's largest, Kaiser Permanente. "We will begin communicating these standards to our physicians at once," Dr. Phil Madvig, physician-in-chief at Kaiser Permanente in San Francisco, said. "They augment well the standards Kaiser Permanente now uses."
Delavirdine is a member of the non-nucleoside reverse transcriptase inhibitor class of agents (NNRTIs) for the treatment of HIV-1 infection. Expanded access is available to HIV-positive males or females who are 13 years of age or older, have CD4 counts from zero to 300, are refractory to other therapy, are receiving at least one other antiretroviral agent and are not pregnant or breast-feeding.
According to a report in AIDS Weekly Plus, laboratory tests have shown delavirdine to be synergistic in blocking viral growth in combination with all other classes of antiretrovirals used to treat HIV-1 infection or AIDS. It has been studied in more than 2,600 individuals with CD4 counts from zero to 500.
In the next few months, Pharmacia & Upjohn will file a New Drug Application for delavirdine under the accelerated approval guidelines of the FDA. Pharmacia & Upjohn announced in January, 1996, that an early analysis of two large clinical trials showed that delavirdine in combination with either AZT or didanosine (ddI) on average produced 68% or greater reductions in viral burden and CD4 count increases of up to 25 cells. These effects on surrogate markers were sustained for more than one year. In addition, HIV-1 infected individuals in these studies who received antiretroviral treatment and whose viral burden was reduced by 68% or better were less likely to die or to develop an AIDS defining illness.
Physicians who are interested in access to delavirdine should call 1 800-779-0070.
Antivirals have limited benefit in extending life, study says
The widespread availability of drugs to treat AIDS has significantly improved the survival rate of those who are HIV positive, but the ability of those drugs to extend life is limited, according to a study by researchers at the Johns Hopkins School of Public Health and School of Medicine. Their results were published in the Journal of the American Medical Association. By studying the differences between groups of HIV positive men in two distinctly different time periods, the researchers were also able to devise a way to estimate expected survival time according to both CD4 cell counts and the presence or absence of clinical symptoms.
Lead author Cheryl Enger, Ph.D., assistant professor, Johns Hopkins Oncology Center, said, "This is the first study to measure the impact of HIV therapy on survival at the population level." Researchers looked at a group of HIV-1 infected men from July l985 through July 1993. During the years 1985 through 1988, therapy was not widely available. From 1989 through 1993, a substantial number of those studied were using antiretroviral drugs and other preventive measures. Different stages of disease progression were defined by both CD4 level and by the presence or absence of clinical symptoms.
For asymptomatic HIV-1 infected men with CD4 counts less than 100, the two and one half year survival rate increased by 32%, from 22% in the first time period to 54% in the second time period. For those with CD4 counts in the 101 to 200 range, the two and one half year survival rate rose from 53% to 71%, an 18% increase. In the range of 201 to 300 CD4 cells, the percent surviving at the two and one half year mark increased from 83% to 91%, an 8% increase. "What we saw," said Alvaro Munoz, Ph.D., professor, Epidemiology, Hopkins Public Health, "was that men who had identical CD4 levels were surviving longer in the calendar period with wide use of antiretroviral therapy. In the short term, the drugs are working. In the long term, the virus dominates."
Although the percent surviving doubled (from 22% to 54%) for those with fewer than 200 CD4 cells, the average increase in survival time ranged from eight to 14 months depending on the starting CD4 count. "This improvement in survival was modest, but encouraging," said Neil Graham, M.D., associate professor, Epidemiology, Hopkins Public Health and Medicine. "With the newer, more powerful drugs now available, I expect we will do even better."
The study, however, also indicated that those with identical CD4 levels differed in their survival rates depending on whether or not they evidenced clinical symptoms such as thrush or high fever. This held true even for individuals with relatively high CD4 levels. These findings confirmed earlier studies showing that those with clinical symptoms, even though their infection had not progressed to AIDS, still had a greater risk of dying than those without symptoms.
The public policy implications of these findings are the support and affirmation they present for the guidelines issued by the National Public Health Service. The guidelines recommend that individuals with clinical symptoms, regardless of their CD4 count, should receive treatment immediately.
The study was funded by the National Institute of Allergy and Infectious Diseases, National Institutes of Health.