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Issue #214: January 29, 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 Associated Press, Indianapolis Star/News, Journal of AIDS and Human Retrovirology, Kaiser Daily HIV/AIDS Report, Los Angeles Times, Philadelphia Inquirer, Pittsburgh Post-Gazette, Reuters, Seattle Times, Washington Blade.
Working Group seeks delay in Rite Aid expansion
Providers nix definition in race-tinged vote
Crixivan maker sued for race discrimination
Scientists highlight adherence concerns at conference
Optimism on vaccine at AAAS Conference
T-20 "impressive" as salvage therapy
Standby guardian bill signed by Ridge
Black PWAs less likely to use some health services
LA conducts nation's second HIV/homeless study
DC advocates support names reporting proposal
Working Group seeks delay in Rite Aid expansion
The Working Group on HealthChoices and HIV, a coalition of people with HIV/AIDS and AIDS service organizations, has asked the U.S. Department of Justice to investigate the merger of Rite Aid Corporation and PCS Health Systems, the region's primary manager of prescription drug benefits.
The Philadelphia Association of Retail Druggists, a group of pharmacies not affiliated with the national chains, is expected to join in the request for federal intervention.
Under the merger plan, Rite Aid, which currently manages prescriptions for four million people through its subsidiary, Eagle Managed Care, will expand its coverage to almost 50 million people, according to Sam Brog, director of the retail druggists' group.
The action comes as most big drugstore chains, including CVS and Eckerd, and smaller neighborhood pharmacies have been forced to pull out of HealthChoices, the program which provides Medicaid benefits to the poor. Some drugstore operators have charged that they are being forced out of the Medicaid market because Eagle Managed Care, which manages three of the four HealthChoices prescription programs in southeastern Pennsylvania, has made it impossible for them to recover their costs.
Anna Forbes, speaking for the Working Group, has said that Rite Aid is able to force out its competitors because it is in the position of being the largest pharmacy chain in the area and also, through Eagle, the manager of prescription benefits for all pharmacies.
Many PWAs have complained to the Working Group that they have faced severe difficulties in obtaining their prescriptions since the pullout by the pharmacies, and that Rite Aid - in many areas the only pharmacy still able to fill Medicaid prescriptions - often does not have the medications in stock or forces delays of a day or more before they are available. "People are having to go to three or four pharmacies just to get their prescriptions filled," Forbes told the Philadelphia Inquirer in an interview published January 28th.
Rite Aid claims it has overcome many of the access problems and has conducted several intensive training programs for its pharmacy staff on HIV/AIDS issues, with great public relations fanfare.
"As with all managed care, the less you spend on providing the care, the more money you make," Forbes said. "That's really the worst problem, and the one we think is most attributable to this conflict of interest."
The Working Group's request for Justice Dept. intervention comes after the Rite Aid purchase of PCS has already overcome most of the legal hurdles built into federal anti-trust law. According to Rite Aid, the Federal Trade Commission and the Justice Dept.'t anti-trust division have reviewed the merger agreement and have not raised objections. Rite Aid vice president Suzanne Mead was quoted in the Inquirer as saying that the purchase will go through since neither federal agency expressed any concerns about it.
"The waiting period has expired. The FTC did not act to prevent the acquisition, and that's really all I have to say," she said.
"We're going to the Justice Department because the FTC approved the sale and we think it was a wrongheaded thing to do," Forbes said.
Led by a group of AIDS service providers which have traditionally opposed efforts to increase funding for minority-led organizations, the HIV Commission's Care Committee has once again backed off from recommending a definition of "minority provider" to be used in the allocation of federal AIDS funds.
At its January 26th meeting, in a racially-polarized vote in which most white members voted down the definition and most people of color voted for it, the Care Committee tabled a recommendation for the definition proposed by a subcommittee, and rejected the unified endorsement of the definition by the Commission's African American and Latino Caucuses.
The proposed definition says that a group can be classified as a minority provider when a majority of its board and staff management are members of the minority group it is targeting with its services, and if it has an historical relationship with the community being targeted. Groups also have the option, if they meet the board and staff guidelines, of showing that they have the cultural competence to provide AIDS services even if they have not historically been considered minority providers.
African Americans and Latinos comprise almost 75% of living AIDS cases in the Philadelphia area, but historically black and Latino AIDS service organizations receive less than 25% of Ryan White CARE Act funds.
The committee's action comes at a time of increasing pressure on both the local and federal levels to enhance funding for minority AIDS service organizations. Last year, the Congressional Black Caucus succeeded in convincing the Clinton Administration for the first time to set aside a percentage of Ryan White funds for minority AIDS efforts, and in late December the Philadelphia City Council passed a resolution declaring an "AIDS emergency" in the city's minority neighborhoods, calling on the health department to concentrate more AIDS funding in minority organizations.
The issue has also taken on more weight as the city's AIDS Activities Coordinating Office (AACO) develops plans to allocate almost $2 million in new AIDS care funds awarded to the region for the coming year under Title I of the Ryan White program. Sources say that the health department is under pressure to report to City Council in the upcoming budget hearings that it has responded to the December resolution by increasing services for minority people with AIDS.
The effort to table the motion at the Care Committee meeting was led by Kevin Conare, executive director of ActionAIDS, Nurit Shein, executive director of Philadelphia Community Health Alternatives, and Helen Coons, of the Health Federation. Each of those groups have sought to compete for minority AIDS funding on the basis of the predominately minority clientele.
Conare told fastfax:"I moved to table the discussion because we weren't getting anything accomplished. There was too much dissension over the proposed recommendation. I thought we would come to a quicker solution if we sent the issue back to the subcommittee to consider."
But, Rob Capone, Executive Director of We The People, said that the dispute represented a return to the racially-polarized past of the AIDS planning process in Philadelphia. "The old guard reared its ugly head and took advantage of the fact that there are new and inexperienced community representatives on the committee," Capone said. "After months of work, and a recommendation from the subcommittee that was overwhelmingly approved by both the African American and Latino Caucuses, the big white-led providers just waltzed in and squashed it."
Despite commitments from health commissioner Estelle Richman that she would assure that the membership of Commission and its committees would be "reflective" of the local HIV epidemic, as a result of her new appointments to the Care Committee, it has a majority of white members. Close to three-quarters of people with HIV/AIDS in the region are black or Latino.
The Care Committee, which is primarily responsible for recommending priorities for allocations of Ryan White Title I funds to the full Commission, now has more members than the Commission itself. As a result of Richman's new appointments, the Care Committee has over 60 members, many of whom are not members of the full Commission.
The dispute over the proposed definition is based on concerns by some providers about the emphasis on the ethnic makeup of the staff and management of the organization, rather than simply on membership on boards of directors. Many organizations which historically grew out of the white gay community have added black and Latino board members in recent years, and have claimed to be "minority providers" because a significant proportion - in some cases a majority - of board members belonged to racial minority groups.
Advocates for historically black and Latino organization have countered that minority members on boards of directors are less important than increasing minority participation in the management and supervisory staff of an organization. While most AIDS agencies serve a primarily minority population as the epidemic has expanded in minority communities and decreased in white neighborhoods, the overwhelming majority of program directors and supervisors in most AIDS organizations are white - except for organizations which have directly grown out of minority communities.
Capone said that "Two years ago, when we had moved to initiate the current minority provider definition, I thought we had finally driven a stake into the heart of the institutional racism and provider dominance that had ruled AIDS services in this region for years. Now it seems that with this year's increase in Commission appointments of friends of the status quo, the stake has been removed and we must again confront the beast."
In another sign of the growing tension on the issue, Rick Britt, the outgoing co-chair of the Care Committee, said at the meeting that the committee's decision to avoid making a recommendation on a definition was insulting to the Commission's African American and Latino membership, which strongly supports a minority provider definition which emphasizes staff composition and cultural competence, as well as a history of involvement with minority communities on the part of the organization.
The dispute is reminiscent of heavy controversies that immobilized the AIDS service system in the early 1990s, as minority organizations struggled to establish themselves in an environment where most AIDS funds were allocated to white gay organizations that had been established in the earlier days of the epidemic. Those battles led, in 1993, to a decision to concentrate new federal funding in minority organizations, but that emphasis was dropped in 1995.
Since then, AACO has usually emphasized its preference for supporting AIDS services to minority communities, but the HIV Commission has never set aside specific funding for minority providers and AACO has not actually applied a minority provider definition when it makes its allocation decisions.
Capone said that he believes that the providers shouldn't even be allowed to vote on the issue. He said, "The only people who should be voting on the definition of a minority provider are the community representatives. The conflict of interest is too overwhelming for the providers to do the right thing. The instinct for self preservation is clouding their judgement."
Capone, who is white, said that "Kevin even tried to persuade me into changing my position by making the ridiculous assertion that if the current definition were taken literally, We The People would not be considered a minority provider because I am the director. This proves to me that providers need to stay out of this and let the community affected make the decision."
Capone noted that he is We The People's only full-time white staffer, and that the board, staff and membership of We The People have been overwhelmingly people of color for many years.
"We The People may be a provider of services, but as a consumer organization our services are oriented towards empowering people with HIV/AIDS and helping them to organize to protect themselves," Capone said. "We are first and foremost a membership organization that advocates for people with HIV/AIDS and our services are only meant to fill in the gaps left by providers who often don't understand what we as consumers really need or who we really are."
Some minority committee members said they may ask the full HIV Commission, which has a majority of people of color, to adopt the revised definition anyway. They also said they may appeal directly to the health commissioner to enforce the new definition, since the ultimate responsibility for assuring adequate funding for minority providers rests with the health department.
Also at its January 26th meeting, the Care Committee elected Conare as one of the two co-chairs of the committee. Conare, a person living with HIV, has been executive director of ActionAIDS since 1995.
Corpus Christi Residence, the only personal care home in Southwest Pennsylvania for people with HIV/AIDS, will close its doors on Feb. 28.
Corpus Christi was among the first personal care homes for people with HIV/AIDS, and was opened during the same period as Betak, the Philadelphia area home which was forced to close three years ago. It offered its residents the medical support, company and activities specific to their needs. Most personal care homes specialize in care for people with an average age of 85 to 90 and do not have staff trained to treat HIV and AIDS patients, who are usually decades younger. Corpus Christi surrounded its residents with people who accepted them and understood their disease, said administrator Cynthia Klemanski.
"This has become home for them, and some of them have actually said that this was the first time they've been this comfortable and felt this safe," she said.
The facility grew out of the now-defunct Pittsburgh Inter-organizational Council on AIDS, which began working on a continuum of care plan for HIV and AIDS patients in 1989. Six partners opened the home in 1994: Catholic Diocese of Pittsburgh, Presbyterian SeniorCare, Mercy Hospital, the Western Pennsylvania Hospital, Allegheny General Hospital and UPMC Shadyside. Several local foundations also contributed to the program.
When hospital budgets grew tighter, the four hospitals decided not to renew their original five-year commitment. Besides the loss of funding, health management organizations weren't willing to negotiate expected contracts, and the clientele was becoming poorer, according to a spokesperson for the home.
At the same time, new medicine combinations allowed AIDS patients to live longer and many people stopped considering the disease threatening. "It's no longer the disease of the month," said Klemanski. "Long-term care is harder to sell and harder to fund."
The Corpus Christi Residence board will look for new partners and grants, but these patients fall through the cracks of health care funding, said Paul Winkler, acting president and chief executive officer of Presbyterian SeniorCare and vice-president of the home's board.
"There's just a gap now in the system that would provide the residential side, the personal services and the disease management for these folks," he said. Although a long-term facility is less expensive than periodic acute care, residence managers found that even HMOs weren't willing to negotiate contracts.
"Today there isn't a box in our health care system that addresses that need and pays for that level of service," Winkler said.
The facility currently cares for 11 clients, most of whom have HIV or AIDS. Those individuals are working with the staff social worker to find new homes. If funds are available, many will move into their own apartments. Some will be moved into personal care homes designed for older residents. Some might enter nursing homes, Klemanski said.
The residents will feel the most impact as the facility stops its services, but the decision affects many in the medical community, said Beth Scharf, a nurse at Allegheny General Hospital and a member of its HIV committee.
"It's just very needed," said Scharf, who has volunteered at the home. "[The residents] just have finally found a place where people love them and accept them ... and boom! It's gone."
Philadelphia's Betak, which had both skilled nursing and personal care components, averted several similar crises in the early and mid-1990s with the help of aggressive advocacy by people with AIDS and strong support from Philadelphia Health Commissioner Estelle Richman. In 1994, state and city officials provided additional support to Betak's operator, Lutheran Homes, after a seventeen-day hunger strike at the facility by members of We The People. In 1996, Richman intervened to turn over operation of the home to Mercy Health Corporation, but shortly thereafter it was closed and the skilled nursing patients were moved to a new AIDS nursing unit at Girard Medical Center in North Philadelphia.
That unit has also hit hard times however, and Mark Davis, a board member of We The People, reported last month that the hospital has started filling the beds as they are vacated with people who do not have HIV disease. The Working Group on HealthChoices and HIV is seeking to contact people who may have been denied admission to the Girard unit to advocate on their behalf.
The only publicly-funded program providing similar care is Keystone Hospice in Montgomery County, which supports a mix of patients with AIDS and other diseases, but is limited to individuals who are likely to be near death. Several other personal care homes in the Philadelphia area have opened their doors to people with HIV/AIDS, although they are often unable to maintain their services for residents if they become severely ill.
Crixivan maker sued for racial discrimination
A group of eleven African American workers at Merck & Co., one of the nation's largest makers of pharmaceuticals and the manufacturer of Crixivan, has filed a class action suit against the company alleging racial discrimination in its treatment of black employees.
The workers say they have been harassed by supervisors, denied training and promotion opportunities, and forced to work for lower wages than similarly-qualified white employees. The civil rights lawsuit charges that Merck "created and condoned a work environment that is hostile to black employees."
Merck is based in Montgomery County just outside Philadelphia.
The workers have also sued Local 8-86 of the Oil, Chemical and Atomic Workers International Union, claiming that it has failed to adequately represent it African American union members as they sought to address the alleged discriminatory behavior.
Merck employs about 600 black workers at its West Point, Pennsylvania site.
The employees are represented by Robert Vance, a prominent Philadelphia attorney, who noted that in 1982, federal investigators found that Merck's hiring and promotion policies discriminated against African Americans at its Montgomery County plant and one in New Jersey. Merck agreed to spend nearly $3 million on a variety of affirmative action and recruiting programs in order to resolve the federal suit. "Merck [has] intentionally and willfully failed to comply" with that agreement, according to the new lawsuit.
A Merck spokesman is quoted in the Philadelphia Inquirer as saying that the company investigated the complaints of the workers who filed the suit and has found them "without merit."
Scientists highlight adherence concerns at conference
Stepping up the drumbeat of concern on the impact of problems that will be caused by not adhering to AIDS treatment regimens, several scientists at this year's annual meeting of the American Association for the Advancement of Science took the stage to warn that wide use of drugs that suppress HIV could end up making the epidemic even worse.
Once the drugs are widely used in the community, people get sloppy about taking them, which allows resistance to develop and makes the virus even more likely to be passed on, said Sally Blower of the University of California San Francisco.
Blower said that even in carefully controlled clinical trials some people did not take their drugs as directed, giving the virus a chance to mutate into drug-resistant forms.
"It could have beneficial effects, but it is also likely that if treatment increases, the likelihood of drug resistance increases," Blower said.
Blower and her colleagues used advanced mathematical models and data from clinical drug trials, to show the course of the AIDS epidemic.
When mathematicians take this rate and apply it to what is known about how people take drugs in day-to-day life, Blower said the picture is a grim one.
"If we increase treatment rates considerably and keep a tight, tight rein on how (the drugs) are handed out, you would have a beneficial effect on 15 percent of new infections," she said. In others words, 15 percent of new HIV infections, on average over 10 years, would be prevented.
But if someone does not monitor patients very closely, Blower's model predicts a 20 percent increase in new infections over 10 years.
Viruses and bacteria become resistant to drugs by mutating. Each time an organism reproduces, a few mistakes creep into the genetic code. Some of these will allow the microbe to evade a drug's action.
The process is slow and if strong enough drugs are taken for a long enough period of time the organisms will be killed before this mutation develops.
But if a person takes a drug in a hit-or-miss way, or stops taking it before all the bugs are killed, those that have a tendency to resist the drugs will be the ones that survive and multiply.
Eventually, the resistant bugs can be passed from person to person -- something doctors have seen in hospitals around the world with drug-resistant bacteria and are just starting to see with HIV.
With HIV drugs this is very likely to happen, because the drugs are difficult to take. They only work when used in a cocktail of three, four or even five different compounds, each of which often has to be taken several times a day and at different times of the day.
Side-effects include nausea and diarrhea, which can discourage regular use.
"There is going to be drug resistance and we've got to expect that," Blower added, pointing out that antibiotic-resistant forms of tuberculosis have existed since the 1950s.
Blower said the answer to the problem is not immediately apparent.
"I'm not saying don't treat people," she said. "I think people need to be treated. But we need to do it in a careful manner."
Blower's group has made similar predictions with tuberculosis.
They said the World Health Organization strategy of training health workers to watch people take their drugs -- known as Directly Observed Treatment or DOTS -- will work well in developed countries but may lead to more deaths in developing countries because it does not work so well against drug-resistant strains of TB.
The development of resistant viruses because of adherence problems has already arisen with common antibiotics. Years of inappropriate prescription by doctors and failure of patients to take their drugs properly has led to the emergence of so-called "superbugs" that resist virtually everything modern medicine has in its armory.
Optimism on vaccine at AAAS Conference
Recent advances in efforts to develop an HIV vaccine are promising, Dr. David Baltimore of the California Institute of Technology said at the annual meeting of the American Association for the Advancement of Science.
AIDS researchers have long set their sights on a vaccine that can produce both a cytolytic and a neutralizing antibody response. Vaccine developers have uncovered promising methods of generating HIV-specific cytotoxic T lymphocytes, but stimulating a strong antibody response has proved the greater stumbling block, Dr. Baltimore noted.
"Can we ever make a strong antibody response? We're working on that problem...a lot of people are working on that problem," Dr. Baltimore said.
Dr. Baltimore applauded recent research published in the journal Science. A group of researchers led by Jack Nunberg at the University of Montana at Missoula, generated gp120-CD4 complexes that are transiently seen when HIV binds to T cells. These immunogens, which expose gp120 epitopes that are normally hidden, elicited strong antibody responses in a mouse model to all but one strain of HIV tested.
Although the research offers as many questions as answers, and clinical trials in humans are not even on the horizon, Dr. Baltimore said the results present "exciting possibilities."
"It's a good idea and it's an idea that [Nunberg] put into practice and it in fact gave the kind of response that you'd like to see," Dr. Baltimore said. "They give me the sense that there are routes to [an antibody response] that have not so far been tried and that may work."
T-20 "impressive"as salvage therapy
The "fusion inhibitor" called T-20 results in dose-related decreases in HIV viral load and is well-tolerated by patients with advanced infection who have been heavily using other treatments, according to the findings of a phase II clinical trial.
T-20, which uses a novel mechanism to inhibit HIV, was given to 78 HIV-positive people for 28 days. The T-20 was administered via injection or infusion, officials at Trimeris, Inc. said in a press release.
Patients who received the higher doses of T-20 experienced a 90% reduction in viral load, according to Dr. Joseph Eron of the University of North Carolina at Chapel Hill. Calling the findings "impressive," he pointed out that the average number of anti-HIV medications that had not worked for the patients in the trial was nine, including an average of three protease inhibitors. He also noted that the subjects' average baseline viral load was 100,000 copies/mL, which is a "difficult hurdle for any drug when administered as a single agent."
Only 3% of patients had to discontinue the drug. Most patients developed mild-to-moderate skin irritation at the site of the injection or infusion.
"An unexpected positive outcome from this trial was the demonstration that twice-daily injection may be a feasible method to deliver T-20 on a chronic basis," Dr. M. Ross Johnson, Trimeris CEO, commented. Targeted levels of T-20 were obtained and sustained using the twice daily injection method, which "expands our options for administering T-20."
Led by advocates from the AIDS Law Project of Pennsylvania and organizations of kinship caregivers, an effort to enact legislation which allows a terminally ill parent or guardian to designate another as a "standby" guardian has finally been passed by the Pennsylvania legislature. The bill was signed by Gov. Ridge last November.
A previous version of the bill died in the legislature because a few legislators were concerned that its wording was too broad.
"This law stabilizes the family, and makes the transition from biological parent to future guardian much more simple and less traumatic," said Cathryn Miller-Wilson of the AIDS Law Project. The old law did not allow parents to name another guardian for a child without giving up their legal rights as a parent.
The new law is expected to help many parents with HIV disease to make clearer and safer arrangements for their children when they get ill. It will also make it easier for grandparents to assume the care of their grandchildren when the biological parent desires it, without forcing the family through time-consuming and difficult custody procedures.
Black PWAs less likely to use some health services
Within a population of HIV-positive homosexual and bisexual men who are all of the same socioeconomic status, race does not appear to affect the likelihood of having health insurance, according to a multicenter group. However, compared with whites, African American men who have sex with men are less likely to use outpatient and dental services.
The findings, which appear in the January 1st issue of the Journal of Acquired Immune Deficiency Syndromes and Human Retrovirology, come from the Study to Help the AIDS Research Effort (SHARE), a Maryland-based subgroup of the Multicenter AIDS Cohort Study.
"Controlling for all socioeconomic and health factors available to us, black men were significantly less likely than white men to go to a doctor, particularly when their CD4 cells were high, and were significantly less likely to go to a dentist" even though they were more likely to have dental insurance, report Nancy Kass of the Johns Hopkins University School of Public Health and colleagues.
The study shows that among the men studied, 19% of African Americans had not seen a doctor in the previous six months, compared to 7% of whites. And whereas 62% of whites had seen a dentist, only 45% of blacks had had a dental appointment.
After adjusting for CD4 count -- a marker of disease progression -- and socioeconomic variables, Kass' group found no racial differences in the likelihood of health insurance coverage, use of hospital services, or use of antiretroviral medications.
"Limited finances were unlikely to have impeded access to health care for men of either race, so we can only conclude that environmental, social, and/or psychological factors help explain their different use of these services," the researchers write. They suggest several reasons for the racial difference, such as that HIV-positive white men may be more integrated into existing gay community networks, or that black men may feel less welcome in the health care system.
The researchers conclude their report by recommending that future studies "examine the factors related to health service use among men who financially are able to access services to determine why race so systematically remains relevant to how outpatient medical and dental services are used."
The researchers collected data for 307 men for a 5-year period. Eighty-four percent had private insurance, 78% were white, 59% were employed full-time, 51% had some college education. The mean age was 44.1 years old, and 38% had a diagnosis of AIDS.
Meanwhile, a study reported in the Journal of the National Medical Association, an organization of black doctors, discussed reasons why HIV rates are higher among people of color.
The complex interaction of several variables, including access and receptivity to HIV prevention and treatment, contribute to the high rates of HIV transmission seen in African American and Hispanic communities, according to the researchers.
Dr. Harry W. Haverkos of the FDA in Rockville, Maryland, and colleagues evaluated HIV/AIDS surveillance data from the Centers for Disease Control and Prevention.
"The relative rates for African American and Hispanics compared with whites were highest for injecting drug users, heterosexual contact, and pediatric patients," they reported.
To explore possible explanations for the higher rates of HIV/AIDS in these two populations, Dr. Haverkos' group used national data sets to calculate the relative rates according to several variables.
They found that race and ethnicity correlated with a number of factors associated with HIV risk. These included "...socioeconomic status, access and receptivity to HIV prevention and treatment efforts, sexual behaviors, substance abuse, and untreated sexually transmitted diseases."
Dr. Haverkos' group points to the importance of considering both psychosocial and behavioral issues that may influence the relative rates of AIDS within different racial and ethnic groups. "The unique cultural perspectives, challenges, and experiences of many racial/ethnic groups are typically not heard in professional or even popular discourse."
There is a "great need for specific HIV/AIDS educational efforts targeted at African Americans and other racial/ethnic groups." However, Dr. Haverkos' group adds that the HIV/AIDS pandemic is not static, and increasing HIV infection rates will mostly likely emerge in new populations.
LA conducts nation's second HIV/homeless study
Low-income people with HIV or AIDS experience high rates of homelessness, and more public money is needed to develop long-term housing for independent living, according to a study released by the city of Los Angeles and Shelter Partnership.
The study, only the second major study in the nation to examine the housing needs of low-income people with HIV or AIDS in a metropolitan area, comes at a time when breakthroughs in medicine have been allowing people with HIV or AIDS to live longer and healthier lives. The first study of homelessness among people with HIV/AIDS was conducted by Philadelphia's Office of Housing and Community Development in 1996.
"In the last four or five years, the phenomenon of AIDS has changed dramatically," said Ferd Eggan, AIDS coordinator for the city of Los Angeles, whose office is one of the sponsors of the study. "We're now starting to see a growing number of people who are HIV-positive but asymptomatic. They're not exhibiting any signs of illness. They don't require hospice care."
Not surprisingly, one key finding was the priority placed by a majority of respondents upon long-term independent living rather than assisted-care facilities.
The study surveyed 785 people in the Los Angeles area and found that almost two-thirds had been homeless an average of 2.3 times in the last three years. More than half of those who had been homeless were homeless for periods ranging from two months to a year.
The Philadelphia study, of 765 people living with HIV/AIDS, found that "homeless persons have ten times the risk of having AIDS" as does the general population in Philadelphia. The study also concluded that Philadelphians with AIDS are three times as likely to have been homeless than the general population.
The LA study broadly defined "homelessness" to include not only people living on the streets or in a car, abandoned building or homeless shelter, but also those who once lived on their own but had to "double up" with family or friends.
The survey's methods were purposely not "scientific," said Glenda Low, projects director for Shelter Partnership, the nonprofit organization that conducted the study. Rather than taking samples at random--which would allow the results to indicate broader trends in the overall population of people with HIV or AIDS--the study tried to target certain demographic groups.
"We purposely wanted more women and people of color for the survey," Low said. "That's who in the next 10 years will be having AIDS. The number of white men with AIDS is decreasing. Everyone else is increasing."
About 20% of those surveyed were women, although women constitute only 9% of those with AIDS in Los Angeles. But the proportion of women is rising. In 1997, the most recent year for which complete statistics are available, women represented 13% of the new AIDS cases diagnosed, according to the Los Angeles County Office of AIDS Programs and Policy. Though whites accounted for 43% of AIDS cases overall, they were only 32% of the new cases in 1997.
The study's respondents tended to be very poor. Three out of four said their monthly income was less than $700. Almost 40% spent more than half their monthly income on housing. They also experienced a high incidence of health problems not related to HIV or AIDS; 43% suffered from mental illness, and 28% suffered from alcoholism.
Other than people with HIV or AIDS, the study also surveyed 61 housing providers and 34 social services or health care programs. More than three-fourths of them anticipated changes in the housing needs of people with HIV or AIDS because of medical advances such as protease inhibitors.
The study's results will "inform our decision-making on planning and allocation of [federal] dollars," said John Maceri, chairman of the committee that advises the Los Angeles City Council, which administers countywide funding from Housing Opportunities for Persons With AIDS, a federal program that has allocated $8.8 million to the county in 1999.
DC advocates support names reporting proposal
The District of Columbia took another giant step last week toward the implementation of an HIV tracking system based on the recording of the names of people who test positive for HIV infection. That step came when the D.C. Department of Health's community advisory board on HIV prevention voted to recommend a names-based reporting system.
Members of that board, most of whom are either people living with HIV or AIDS or administrators of local AIDS service programs, had previously led the charge in opposition to a names reporting system.
The Jan. 14 vote does not set policy. It does, however, remove much of the local opposition to names reporting. D.C. Agency for HIV/AIDS Chief Ron Lewis made it clear at the meeting that his agency sees no choice but to move to names reporting. He cited both a need for more accurate data on HIV and a clear push at the federal level for states to begin tracking HIV with names-based systems.
Currently, D.C. records the names of people diagnosed with AIDS, just as every state in the country does, but does not track HIV infections in any form.
Lewis said the director of the Department of Health will ultimately make the decision on how to proceed with HIV surveillance. He said he expects that decision to be made and a system to be in place within six months. To delay the process any longer, he said, would jeopardize funding from the U.S. Centers for Disease Control and Prevention for a variety of local HIV/AIDS programs.
"We're clear that the feds are moving to HIV cases as the determination of allocation of resources," Lewis told the committee in one part of a lengthy presentation making the case for a names reporting system. "We've seen that in our applications for Title I, it's in our applications for Title II. It's going to go further than that. We have about 40-some million dollars that's tied to formularies that are based upon us being able to show our HIV cases. That's the new trend."
The CDC has officially said only that funding for states' surveillance programs will ultimately hinge upon having an HIV surveillance program in place that meets their standards for accuracy and efficiency. But Lewis told the committee that city officials have been convinced by private conversations with CDC officials and by trends they've seen in CDC funding in recent grant processes that states that fail to meet the CDC's standards for HIV monitoring will receive less funds for all programs. Federal dollars for AIDS programs will no longer be allocated according to the number of AIDS cases in a given state, he explained, but according to the number of HIV infections.
In new guidelines issued Dec. 10, the CDC strongly recommended that all states begin tracking HIV via recording the names of people who test positive for the virus. But the guidelines also explicitly stated that the CDC will provide technical assistance and funding for both names reporting systems and systems that assign each new HIV infection a numerical code, or "unique identifier."
Unique identifiers have been promoted by those that say names reporting will seriously deter certain populations from seeking an HIV antibody test. Those opposing names reporting argue that marginalized populations, such as closeted Gay men, African Americans, and Latinos will not trust the government to keep their names confidential.
Virginia already has an HIV names reporting system. Maryland currently uses a unique identifier system, and HIV/AIDS Administration Director Liza Solomon said the state intends to stick with it despite the CDC's push for names reporting. But during last week's meeting, the D.C. community advisory board voted down a motion to adopt a unique identifier system in consultation with Maryland.
The advisory board also voted to recommend that anonymous HIV testing be presented as an option at all city-funded HIV testing cites. Lewis said anonymous testing sites will definitely still exist but said it is unclear if each site will have anonymous testing as an option.
The surprise turnaround of the previous opposition to names reporting in D.C. came after a lengthy presentation from the city laying out the case for names reporting. The portion of that presentation that appeared to make the most impact on committee members was Lewis's explanation that the names of people who test positive for HIV will be recorded no matter what system is used for tracking the virus. The difference, he said, is who will be responsible for storing that information and guarding against its misuse.
Under a unique identifier system, he said, either the clinician who administers the test or the lab that actually tests the sample taken by the clinician will assign people who test positive a coded identifier. Whoever assigns the code then must keep a log that matches each code to a name so that follow-up research and confirmation can be done if necessary. The burden of confidentiality, then, will lie at this decentralized point in the process.
But in a names reporting system, the names of people who test positive for the virus are sent directly to AHA. AHA, then, becomes responsible for storing the information and protecting against its misuse. And, as city officials repeatedly stressed throughout last week's meeting, D.C. has never had a breach of confidentiality with the names of people diagnosed with AIDS that are now stored at AHA.
"There's gonna be names," Lewis concluded, "regardless."
Officials also detailed for the committee the steps involved in recording new infections using each system. Officials estimated that a unique identifier system would increase the financial burden and work load for the agency by 40 to 60 percent every year for an indefinite number of years. A names reporting system, on the other hand, would be fairly easy to put in place and run because it would be done in conjunction with existing names reporting processes for other diseases, including AIDS.
Still, opposition to names reporting exists. According to deputy director Pat Hawkins, the Whitman Walker Clinic continues to have "serious concerns" about both names reporting and unique identifier systems. (In a Dec. 18 story on names reporting, the Blade incorrectly reported that the Clinic supports a unique identifier system in the District.) And Mayor Anthony Williams's transition teams advising on Gay and AIDS issues have recommended that the city implement a unique identifier system.
Most agree, however, that better data on HIV infections locally and nationally is required. As new drugs prolong the time period an HIV-positive person remains asymptomatic, and as the demographics of the epidemic appear to shift, monitoring the epidemic from its end stage is no longer adequate.
"When we're now looking at the HIV status in our community, we're looking at it at the very tail end. That makes it very difficult to really know what is going on, how the disease is progressing, because we're looking at it too late," Lewis told the meeting last week. "If you're using this profile [created from AIDS surveillance] to determine how to allocate resources, you would inadequately apply resources … and would not necessarily -- in terms of prevention strategies, in terms of health service strategies -- address where the true prevalence and incidence of HIV is out there." © Washington Blade
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