|
 |
|
|
|
Issue #169: March 22, 1998
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 information in this issue include AIDS Alert, Boston Globe, Chicago Defender, Reuters.Community says no to HIV names reporting
Black docs plan trials network
Blacks say AIDS is leading health problem
CDC plans to redesign minority programs
Community says no to HIV names reporting
The Philadelphia Health Department's AIDS Activities Coordinating Office (AACO) held two public forums on the subject of HIV reporting at the City's AIDS Office on March 11th and March 18th, and heard a resounding "NO" to the use of names in any reporting system used to track the HIV.AACO's co-director Joe Cronauer opened the forums by discussing how the Centers for Disease Control (CDC) has been trying to push the nation into names reporting for the past several months. He told participants that Pennsylvania and Philadelphia health authorities have been reporting the names, demographic data, and information on risk factors of people who have been formally diagnosed with AIDS, but have resisted reporting HIV infection alone without an AIDS diagnosis.
He also informed participants that under Pennsylvania state law, the determination as to whether to require HIV reporting is appropriate is the "right and responsibility" of the Pennsylvania Department of Health, and that the Philadelphia Department of Public Health is required by law to follow whatever requirements are established on the state level.
Those in attendance overwhelmingly condemned the idea.
Opposition to name based reporting was particularly strong among members We the People. The membership so strongly opposes the idea of using names based reporting that they canceled their monthly board meeting on March 11th so members could attend the forum. Over 25 members attended the forum, of which eight provided testimony against names reporting.
Rob Capone, WTP education director, testified that the fear of the government is still pervasive in the communities where Positive Voices (WTP's Speakers Bureau) does outreach. There are people who won't get tested if they know their names will be used, he said. "I understand the need to track the epidemic," he said, "but they don't need our names. These are the same guys that did Tuskegee."
A member of We The People said she was thoroughly opposed. She said she was newly diagnosed and is open about her HIV status, but "I did not put my name out there until I was ready, and it is not fair for someone else to have control over who knows about your HIV," she said.
She said names reporting sounds like a quarantine type situation to her. "Who would trust Governor Ridge with their HIV status?" she asked. "There are people living with HIV who haven't told their mother, brother, sister, friend, but the state is supposed to know. "The state is not willing to give HIV positive people benefits, but it wants to know their names," she said.
Another WTP member, had this to say: "I'm totally opposed to name reporting. Governor Ridge wouldn't want his name on the list if he were positive. I bet he'd say no."
Curtis Osborne, WTP Executive Director, endorsed a unique identifier system in his testimony. He said that, with the infection rate climbing in the African American community, it is irresponsible to adopt name reporting. Name reporting will prevent African Americans from getting tested, he said. He added that we have to fight against name reporting and against HealthChoices, the new state Medicaid program which has limited access to care for many PWAs. "If we let this happen, we may as well roll over and die," he said.
Marvin Crawford, WTP interim Board President, also endorsed a unique identifier system. Crawford, a veteran who fought in Vietnam, opposes name reporting because he doesn't think that the government will keep the names confidential. "When I was tested at the VA hospital, the janitor came in and told me that I was positive," he said.
Darrell Davis, a long-time WTP member, said that if necessary, we should march on Harrisburg to stop the state from adopting name reporting. He told Cronauer that "when you take the report on what happened at these forums to the state, you should take us with you."
Cronauer responded that the community should feel free to contact the state independent of any AACO report.
Other speakers condemned the idea of name reporting and endorsed the use of a unique identifier system. Anna Forbes, a longtime advocate of unique identifier reporting systems and presently staff to the AIDS Workgroup on HealthChoices, pointed out that the governor had agreed during his campaign to oppose HIV name reporting, and she urged that he keep his campaign promise. She also said that a unique identifier system would be preferable. Unique identifiers have been used effectively in Maryland, she said. She also noted how one state that already requires name reporting had ordered their health department to cross reference the list with a list of health care providers and to force those found to be HIV positive to inform their patients.
Those testifying also included the executive directors of many of the areas AIDS service organizations, who also were overwhelmingly opposed to names reporting.
Both David Acosta, Executive Director of the Gay and Lesbian Latino AIDS Education Initiative, and Richard Liu, Executive Director of AIDS Services in Asian Communities, noted fear of the government as being a current barrier to getting tested in the Latino and Asian communities. They noted that HIV infected individuals are precluded from immigration into the U.S. and they said that names reporting would severely increase this fear and would result in fewer people getting tested in their communities.
Several members of ACT-UP Philadelphia attended the second forum.
Jose DeMarco of ACT-UP noted that the state has already failed to provide adequate health care to those living with HIV in the state. He pointed to the HealthChoices managed care system which has been condemned by PWAs, their advocates, and health care practitioners for being under-funded to meet the needs of people living with AIDS and other chronic illnesses.
He said that the state already has the names of many poor people with HIV and is doing nothing to help them.
Julie Davids, another member of ACT-UP and the Education Director of Philadelphia FIGHT, reminded the Health Department that it has refused to follow state law in the past. She noted that despite threats from the state, the City of Philadelphia still funds needle exchange programs and that she believes that the City should take the same stance on names-based reporting.
Black docs plan trials network
The National Medical Association is in the process of planning an AIDS Clinical Trials Network to explore the specific clinical issues of African Americans with HIV infection, Dr. M. Keith Rawlings of the Southeast Dallas Health Center in Texas told participants at the second summit meeting of the "Leading for Life" campaign this week.The NMA is the nation's leading professional organization of African American physicians and medical researchers.
The conference was co-sponsored by the W.E.B. Du Bois Institute for Afro-American Research and the AIDS Institute at Harvard University. Dr. Rawlings, who is also chairperson of the AIDS Task Force at the NMA, participated in a panel discussion on HIV treatment issues concerning African Americans.
The first issue, Dr. Rawlings said, is one of access. Access to primary care in general is a problem in the African American community, and access to physicians who are experienced in treating HIV infection is particularly so. "To increase and expand the numbers of clinicians who have medical experience with this population is absolutely necessary as we enter an era of increased viral resistance and [begin to deal with] issues of compliance and adherence to medical regimens that are more complicated and increasingly more arduous."
The second issue is that of clinical research, Dr. Rawlings continued. "There has not been a significant body of epidemiologic or clinical research [investigating] the implications of medical management in the African American community." There is a need to know what types of educational activities are required to improve adherence and compliance in this population, which is not a homogenous one.
Another challenge Dr. Rawlings highlighted was "...the implications of HIV therapeutics as we begin to look at AIDS as a chronic disease," especially the medical manifestations of treatment regimens in patients with "..concomitant medical problems that are often more exasperated in the African American community." Some specific examples include diabetes and the effect of protease inhibitors on glucose control, and the higher incidence of coronary artery disease and the implications of drug-related hyperlipidemias.
"These are very significant issues that are now beginning to be manifest as people live longer -- and unfortunately in the African American community we are seeing many of these concomitant diseases earlier in life," he said. HIV infection "...is no longer a disease of only the young." There are now more AIDS patients over the age of 50 than under the age of 20, and "...we need to re-evaluate how we are providing care."
"The third issue is the need to provide access to care through venues that the [African American] community has historically or typically received some care," he continued, which would enable collection of more data. A number of studies have looked at various aspects of virology and the use of new testing in the form of phenotypic and genotypic assessments, he explained. However, communities of color have been relatively underrepresented in these types of investigations.
"As a result, there has been an effort recently on the part of the National Medical Association to begin to set up a network of AIDS-experienced clinicians who are basically African Americans, who [also] have experience in clinical research." It is hoped that this AIDS Clinical Trial Network will begin to investigate some of these questions and become a venue, though not an exclusive one, to look specifically at issues that impact upon both African American patients and African American clinicians. Dr. Rawlings added that there is also a need to look at how the number of African American physicians who have the expertise to provide AIDS care can be increased.
The first major trial is currently being set up, Dr. Rawlings continued, and hopefully will begin this year. The trial "...will start to look at some of these issues in a population-specific...group and begin to investigate some of these questions." The objective is not to simply to enroll African American patients, but, "...first and foremost, to make sure that we are asking the right questions." In other words, the goal is not to duplicate research that is already being performed, but to answer questions that are different or more pertinent to HIV infection among African Americans.
Blacks say AIDS is leading health problem
The majority of African Americans -- 52 percent, according to a survey released in March -- feel the AIDS crisis is the leading health problem facing the nation. Almost half of the African American population knows someone who is has HIV disease or has died from AIDS, according to the survey.And most African Americans in the survey say the problem has worsened in recent years.
The study by the Henry J. Kaiser Family Foundation notes that within two years, more than half of all AIDS cases in the United States will be among African Americans. The study of 811 African American adults was released by the Harvard AIDS Institute.
Some 35 percent of all reported AIDS cases and 43 percent of new AIDS case in 1996 were among African Americans, even though African Americans comprise only 12 percent of the U.S. population. In Philadelphia, over 62 percent of reported AIDS cases have been African American, compared to a city African American population of 38 percent.
Every day, nearly 100 African Americans are diagnosed with AIDS. It has become the leading cause of death for African Americans under age 55, ahead of heart disease, cancer and murder.
AIDS kills twice as many African American men as homicide. African American women make up 60 percent of all new AIDS cases reported among women.
Some 63 percent of new pediatric (13 and younger) AIDS cases are among African Americans.
One in two African Americans said they are "very concerned" about becoming infected by HIV, a level of worry twice that of a national sample of all Americans. And 40 percent of African Americans said their personal concern has heightened from just a few years ago.
Some 49 percent know someone with HIV or AIDS or someone who has died of AIDS. That compares with one-third of all Americans.
African Americans' worries about HIV and AIDS are based on their high knowledge of the disease, the study said. Some 97 percent know how AIDS is transmitted, 73 percent know there is no cure. And 56 percent of African Americans have been tested for HIV, two-third of them under age 30. That compares with 38 percent of all Americans having been tested, among whom 51 percent were aged 18-29.
"The challenge now is to convert this high level of awareness and concern into greater action by all those involved in the fight against AIDS," Dr. Sophia Chang, director of the Kaiser Family HIV programs, said.
African Americans are looking for practical help in how to talk with children and partners about HIV and AIDS and where to go for treatment and testing, the survey found.
Some 61 percent of those surveyed said local health care providers care the most about addressing the AIDS crisis. About half said local schools and churches care a lot. But less than 20 percent of African Americans said local, state or federal government care much.
"The survey suggests a disturbing need for leadership within the African American community about an epidemic which is 16 times more likely to strike its women and six times more likely to strike its men," Henry Louis Gates Jr., chairman of the department of Afro-American studies at Harvard University, said in a statement.
Helene Gayle, director of the National Center for HIV, STD and TB Prevention at the Centers for Disease Control and Prevention in Atlanta, agreed.
"It has become increasingly clear that the government cannot alone successfully combat this threat," Gayle said. "Overcoming current barriers to HIV prevention will require that leaders from all sectors of the African American community play an even greater role."
"Our community is at war, at war with a terrible disease - and equally at war with a sense of denial among our leadership," said Gates.
"Let the message go out - business as usual simply cannot stand," added Mario Cooper, founder of Leading for Life, a New York advocacy group, and a member of the Harvard AIDS Institute International Advisory Council. "We are in a crisis."
CDC plans to redesign minority programs
Eight years ago, responding to the challenges of preventing HIV in minority communities, the Centers for Disease Control and Prevention (CDC) established a competitive grants program to directly funnel HIV prevention dollars to minority community-based organizations (CBOs). The program became a mainstay for hundreds of CBOs and was seen as an effective way to assure that CDC dollars were targeted to the most needy places.Until last year, that is, when many CBOs lost out in the competition and had to cut back staff or shut down completely. What happened last year caused such a backlash of criticism that the CDC is questioning whether a major overhaul is needed, not just of this program, known as 704, but of its entire portfolio of HIV prevention grants.
The CDC began the program in 1989 because of the disproportionate need for HIV prevention services in minority communities, coupled with the fact that state and local health departments were slow to award funding and technical assistance to these areas. Program 704 also was designed to improve community and organizational development of HIV prevention programs. Toward that end, the CDC provided up to $18 million in grants that came up for competitive renewal every three years.
In past funding cycles, many previously funded CBOs were awarded grants, but in 1997 the competition become unusually fierce, for several reasons, says Gary West, MPA, the CDC's deputy director of the division of HIV/AIDS Prevention, Intervention, Research, and Support. More than 500 groups applied for the $18 million windfall, with requests totaling more than $90 million, West says. Unprepared for the large turnout, the CDC used 240 staff members to assess the applications using criteria that included the applicant's degree of collaboration with the community planning process, which has become responsible in most locales for deciding how public HIV prevention dollars should be disbursed.
In the end, only 94 programs were selected for funding. What was more disturbing, however, was the fact that two-thirds of the applicants who had previously been funded did not make the cut. It was the highest turnover in any program administered by the CDC.
"They were very many disappointed applicants," says West. "Everyone was convinced they should have been funded. There were many good programs that were not funded, and it had a substantial effect among them. Some closed. Many had to lay off staff. And in all cases there were significant reductions in services."
More than one agency director complained to congressional representatives, who in turn called the CDC.
West attributes the heavy competition for direct grants to a dwindling supply of funding from non-governmental sources. "In recent years we have seen community-based organizations, especially minority ones, become more dependent on funding streams of the CDC," he notes. "There is actually less opportunity now for funding outside our programs than there was five or 10 years ago."
Asked why so many experienced CBOs lost out to start-up organizations, West responded: "I think organizations that were previously funded didn't take the competition as seriously as they probably should have. And second, the bar was raised. There are many more minority organizations out there that have gained experience in other venues, and there is more interest now."
The uproar over program 704 has lead the CDC to review its short- and long-term strategies for developing and maintaining HIV prevention program infrastructures in racial and ethnic minority communities. As part of a program reassessment initiative, it plans to review and possibly redesign all CDC-supported HIV prevention programs in racial and ethnic minority areas, consult with minority community leaders, and set up conferences and workshops to share program experiences and ideas.
One consideration is how to provide more continuity of funding. As non-governmental organizations, CBOs cannot expect that guaranteed funding. "What we must determine is, are there better ways of using these resources that would service these communities in a less disruptive fashion?" asks Ron Valdisseri, MD, MPH, deputy director of the CDC's Center for HIV, STD, and TB Prevention. Even CBOs that receive CDC funding often have trouble meeting the government's stringent guidelines. As many as one-quarter of qualifying organizations must drop out because they don't have systems in place to assess and manage funds, West says.
"Financial management systems and skills problems have been the Achilles heel of these programs," he notes. "You take an entrepreneurial organization with two or three people and suddenly they get $300,000, and they are now facing rules and regulations and auditors who will look closely at what they are doing."
One area of confusion is the CDC's criteria for qualifying as a minority organization, says Cynthia Gomez, Ph.D., a CDC consultant and research specialist at the Center for AIDS Prevention Studies in San Francisco. "Are they AIDS-specific, health-specific, or any organization that may be a conduit for prevention services?" she asks. "Also, why should the CDC target minority organizations when other non-minority organizations might be serving minority communities, and they may need technical assistance because they don't understand minority communities?"
While some health officials have questioned the need for direct funding to minority CBOs, West points out that the vast majority of CDC funds for HIV prevention programs, $248 million, go to community planning and HIV prevention cooperative agreements with state and local health departments.
Their treatment of minority CBOs is not consistent across the board, he argues.
"There are many strong programs at the state and local level, but we still hear about some areas of the country that have trouble giving money to CBOs, and some give very small awards," he says.
The Rev. Edwin Sanders, a CDC consultant and pastor of the Metropolitan Interdenominational Church in Nashville, TN, agrees that discrimination still exists and that the CDC is perceived as creating a more fair review of applications than state and local health departments. "Because of the struggle over limited funds, relationships between CBOs and health departments often translate to high levels of suspicion as to whether the process is a fair one," he notes. "I, too, have had some bad experiences with this."
Sanders suggests that the CDC might include in its criteria that a CBO should not qualify unless it shows it can sustain its programs without external funding. "That may mean they have to operate at a lower level, but at least the program won't go away when the dollars do," he adds.
Beyond the issue of direct funding, the CDC is trying to evaluate how effective grant programs have been in building capacity for HIV prevention services in minority communities. As part of a viability study, the agency is using scientific methods to evaluate the factors that help CBOs sustain themselves, he adds.
To obtain a weekly email version of fastfax, contact with the message: "subscribe" or fill in the box on the fastfax index page.