Issue #180: June 7, 1998

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Women, minorities get substandard AIDS care: study

HIV can resist almost all treatment, study says

AIDS housing "region" split by Feds

Delaney, Lands to speak in Philadelphia

Women, minorities get substandard AIDS care: study

A new study finds that many people who have AIDS are getting substandard care, primarily because their doctors are not following federal treatment guidelines.

The first comprehensive national HIV/AIDS treatment survey found that one in four people with HIV/AIDS are receiving care inconsistent with U.S. Department of Health and Human Services guidelines issued in November 1997 that recommend triple drug therapy including a protease inhibitor. Inexperienced doctors are prescribing less-effective treatment regimens, such as single and double reverse transcriptase inhibitors, he said.

The survey also found that women and minorities are most at risk for receiving substandard care.

The National HIV/AIDS Treatment Survey evaluated the current treatment practices of 476 physicians. "Physicians with the greatest experience are more likely to adhere to the guidelines, and fewer women and minorities than white men are treated by the most experienced physicians," Dr. Bartlett said.

"Women and minorities with HIV are both more likely to be HIV-symptomatic than white men when starting HIV treatment and to be treated by less experienced physicians," Volberding continued. He said that 36% of women, 42% of African-Americans, and 43% of Hispanic HIV-positive patients are symptomatic when beginning therapy and to have higher viral loads with lower CD4 cell counts. This compares with 27% of white men who are symptomatic when starting therapy.

Dr. Volberding cited figures showing that 53% of white men were treated by the least experienced group of physicians, compared with 67% of women and minorities, including Hispanics and African Americans.

The study's results were released as the city's AIDS Activities Coordinating Office (AACO) and The Philadelphia AIDS Consortium (TPAC) have reduced funding for primary medical care programs to uninsured people. Both agencies have claimed that the funding reductions result from "priority-setting" processes conducted by people living with HIV/AIDS themselves. Others have claimed that consumers are manipulated by AIDS planners because the consumers do not receive adequate training for their participation in the process, and are led to certain conclusions by the information they are presented. first aid kits

TPAC, which has been under severe pressure for excluding many historically black and Latino organizations from its funding, is facing a federal lawsuit for specifically excluding the use of state AIDS funds for primary medical care services for Latino PWAs. Last spring, AACO cut back on funding for the Jonathan Lax Treatment Center and We The People's walk-in clinics, and was unable to fund a new site at North Philadelphia's HOPE Clinic for the Lax Center.

The study confirmed claims by We The People and other minority AIDS advocates that women and people of color are more likely to be treated by primary care doctors who are inexperienced in treating AIDS and therefore waited longer to prescribe aggressive treatments. Dr. Paul Volberding of the University of California-San Francisco -- which conducted the National HIV/AIDS Treatment Survey along with pollster Lou Harris and Johns Hopkins University -- said that "The disparity in treatment of HIV ... signals an urgent need to educate physicians and patients more aggressively on the HHS guidelines for people with AIDS." nod32 freedownload

Volberding noted that while "only 60% of the least experienced physicians prescribe three or more (antiviral HIV drugs) ... 87% of the most experienced doctors ... used the multiple-drug cocktail as described in the guidelines." He added that the barriers to AIDS treatment for women and minorities "may, in part, contribute to the increased rate of mortality seen among this patient population."

Volberding said one reason for the disparity in AIDS treatment between white males and other groups could be economics. He noted that white males are "most likely to be covered by private insurance." Furthermore, he said Medicaid does not pay for expensive AIDS drugs in all states.

Pennsylvania's Special Pharmaceuticals Benefits Program does cover the approved protease inhibitors for uninsured people, and the state Medicaid program will pay for the drugs for Medicaid recipients, although many PWAs report that local pharmacies will often not stock the drugs.

One woman, interviewed on CNN, said, "This doctor told me that because I was on Medicaid that he was going to take me off the protease inhibitors because it was not his belief to charge taxpayers for expensive medication."

White male AIDS patients are "often educated and articulate gay men who are not shy about demanding the best treatment." Also, with good insurance benefits, they can go to an AIDS or infectious disease specialist, while most minorities must go to a primary care doctor for AIDS treatment. Jim Graham, executive director of the Whitman Walker Clinic in Washington, DC, said: "We don't need a study to show that. I wasn't surprised to hear that blacks and Latinos and women are the last to be served and with the least quality. ... [It is] general economic disadvantage that keeps people away from good medical care."

Salvatore notes that from a public health standpoint, even more troubling is the fact that these undertreated groups have the fastest rates of new HIV infection.

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HIV can resist almost all treatment, study says

Along with new evidence that women and people of color are not receiving the most appropriate treatments for HIV disease, another discouraging study indicates that HIV can develop simultaneous resistance to almost all available antiretroviral drugs (including protease inhibitors) anyway, according to Stanford University researchers.

Dr. Robert W. Shafer and his California-based colleagues evaluated four consecutive HIV-positive patients who had been previously treated with many antiretroviral drugs. They performed HIV-1 drug susceptibility tests, along with reverse transcriptase and protease sequencing. Their findings appear In the June 1st issue of the Annals of Internal Medicine.

The study found that the viral strains carried by patients in the study can outwit nearly every major AIDS medicine on the market. In their work, they probed the genetic fingerprints of the AIDS virus taken from four patients who had not responded to a battery of drug combinations. The four men had been battling AIDS for between four and nine years.

The careful molecular analyses of these strains showed that they had all mutated into forms known to be resistant to 10 of the 11 approved AIDS drugs.

A follow-up study, not included in the Annals of Internal Medicine article but reported in the San Francisco Chronicle, determined that 20 percent of 400 long-term AIDS patients tested in the Bay Area carried strains of HIV that have built-in resistance to "the majority of anti-HIV drugs."

San Francisco AIDS Foundation spokesman Derek Gordon said the lab results explain how and why the drug combinations are not working for everyone. "People seem to have gotten a message that we can relax, that the epidemic is under control," he said. "This is scientific evidence that relaxing is the last thing we should be doing."

Shafer said patients who have been diagnosed more recently and were given the latest combinations of AIDS drugs are less likely to develop resistance than those who have been taking AIDS drugs for years -- often as soon as they became available on the market or in clinical trials.

"The problem is that most people don't fit into the category of just diagnosed and able to tolerate three or four drugs for the rest of their lives," Shafer said.

Existing AIDS drugs attack one of two vulnerable targets in HIV, preventing it from replicating. Drugs of the AZT "family" block a protein called reverse transcriptase; the newer protease inhibitors block an enzyme called protease.

The Stanford researchers found, however, that all the viral samples contained eight different genetic mutations that allow HIV to evade the AZT family, and seven different mutations that can overcome protease drugs.

The viruses were vulnerable to only one approved drug, the reverse transcriptase inhibitor Viramune, sold by Boehringer Ingelheim. It works against the same target as AZT but is made from a different class of chemicals. None of the four patients took that medication -- the test was done on human cells grown in a test tube.

Two other drugs that have not yet won FDA approval, Dupont Merck's Sustiva and Gilead Sciences Preveon, were also effective in test tube studies. Shafer said that, had the patients taken these drugs as well, there is every reason to think that viral resistance would develop for these drugs, too.

Dr. Shafer's team found that HIV isolates "...from the four patients shared seven protease mutations and eight reverse transcriptase mutations." They detected high-level resistance to zidovudine, lamivudine, indinavir, saquinavir, and nelfinavir. In addition, they found low-level HIV resistance to didanosine, zalcitabine and stavudine in these patients.

By conducting intensive analysis of the blood from three patients, "we have shown the stability of multidrug resistance over time" they add.

Because these data complement previous reports, they believe these findings are not "anecdotal peculiarities." Dr. Shafer's group hopes these findings will "...provide insight needed for the development of antiretroviral drugs that will complement those already available."

In their study, "Shafer and colleagues provide textbook examples of the dangers of suboptimal sequential therapy," Dr. Jon H. Condra of Merck Research Laboratories in West Point, Pennsylvania points out in an accompanying editorial. Although the patients in this study usually received combination treatment, new drugs were added one at a time. "The result was essentially 'sequential monotherapy'," he continues.

Dr. Condra, discusses the uncertainties inherent in testing for viral resistance and recommends it not be relied on for clinical decision making.

"Given the poor prospects for long-term salvage of failed therapy, the best strategy is to prevent resistance from occurring in the first place," Dr. Condra says. Consideration of basic virology and genetics can provide a "sound rationale for accomplishing this."

First, "...it is critical to maximize the potency of therapy from the beginning." In addition, genetic barriers to resistance must be maximized. He suggests that "...drugs that require the virus to undergo multiple mutations to achieve resistance...be combined with the most efficacious agents in the other therapeutic classes."

It is also important that "aggressive therapeutic regimens...be made as tolerable and user-friendly as possible (without compromising efficacy) to encourage long-term adherence and continued viral suppression."

The report is a "wake-up call" that the HIV epidemic is not over, according to a press release from the San Francisco AIDS Foundation. "This study confirms many of our worst fears about the long-term ability to control HIV with currently available treatments," the group said.

The discouraging study has put in bold relief the urgency of developing new treatments.

"There is a problem with drug resistance, and we can't fool ourselves," said Shafer.

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AIDS housing "region" split by Feds

Acting on a congressional initiative led by New Jersey Democrat Frank J. Lautenberg, the U.S. Dept. of Housing and Urban Development (HUD) has split what for six years has been a nine-county region for distributing AIDS housing funds into two: five southeastern Pennsylvania counties and four South Jersey counties, each funded separately.

Previously, all AIDS housing funding had been awarded to the Philadelphia Office of Housing and Community Development (OHCD), which was then responsible for determining how to allocate the funds across Bucks, Chester, Delaware, Montgomery and Philadelphia counties in Pennsylvania, and Burlington, Camden, and Gloucester counties in New Jersey. Salem County was added later.

Most federal AIDS funding, including Housing Opportunities for People with AIDS (HOPWA) and Ryan White CARE Act funds, are distributed in regions defined by the federal government which combine metropolitan areas generally considered as part of the same geographic area by local residents. These areas, called "eligible metropolitan areas," or EMAs, usually are based around the major city in a particular region, although in some areas of the country, where there are fewer AIDS cases, they can comprise several states.

AIDS funding allocations are then made according to complicated formulas based on determining the number of people with AIDS compared to the entire population of the region.

Until the HUD action, Philadelphia-area AIDS planning efforts have been complicated by the use of three different regions for different federal funding sources. HOPWA funding and Ryan White Title I funding has been distributed in a nine-county region including southeastern Pennsylvania and southern New Jersey; Ryan White Title II funding has been allocated through two regions, one comprised of the five southeastern Pennsylvania counties and the other comprised of all counties in New Jersey; and federal AIDS prevention funds, allocated by the U.S. Centers for Disease Control and Prevention (CDC), have been allocated in three different regions -- two in Pennsylvania (the city of Philadelphia as one, the rest of the state as the other), and all of New Jersey as a third.

With the advent of targeted AIDS housing funds in 1992 under HOPWA, HUD adopted the Ryan White Title I eligible metropolitan area as the official region over the objections of both Philadelphia AIDS planners and South Jersey advocates. The opposition was based on concerns that stretching the funding region over two states with different Medicaid programs, AIDS service systems, and demographics, only made developing a coherent regional plan for AIDS housing more complex.

Pennsylvania advocates were also concerned that including largely rural areas of Salem and Gloucester counties in South Jersey would artificially water down the amount of AIDS housing funding made available in the Philadelphia EMA through the federal formulas. New Jersey advocates complained that HUD was duplicating a process, already in place with Ryan White Title I funds, which forced them to participate in Philadelphia's AIDS system and isolated them from the rest of New Jersey's AIDS networks.

In order to assure that AIDS housing funds were distributed fairly, in a region dominated by Philadelphia (which has 72% of AIDS cases in the region) the Philadelphia Office of Housing and Community Development negotiated with the South Jersey AIDS Council to automatically assign a proportion of any HOPWA funds received based on the percentage of AIDS cases reported from the four southern New Jersey counties included in the EMA (Burlington, Camden, Gloucester and Salem counties). This has usually meant that between 14-15% of the HOPWA funding has been set aside for South Jersey programs.

Lautenberg acted after several years of complaints from South Jersey people with HIV/AIDS, AIDS service providers, and elected officials. He introduced legislation quietly this year which required that the Philadelphia EMA HOPWA region be split so that HOPWA funds currently administered in Philadelphia would be shifted to the New Jersey allocations process, which is run by state officials in Trenton.

Lautenberg's measure went through without opposition, and the new rules will take affect with the new fiscal year, which begins on July 1st.

Sources said that a similar proposal may soon be made to split the Ryan White Title I region along the same lines as the new HOPWA plan.

Most advocates believe that a similar decision on Title I allocations would relieve some of the complexity and conflict that has occurred in the distribution of those funds. Last year, a coalition of South Jersey AIDS service providers and people living with HIV/AIDS charged that Philadelphia's AIDS Activities Coordinating Office (AACO), which administers the Title I funding, was discriminating against them in the allocation of transportation funds under Title I. AACO denied the allegation and developed a plan to increase the allocation for those services.

The immediate impact on southeastern Pennsylvania of the Lautenberg measure may be to reduce slightly the amount of funding available for HOPWA for Pennsylvanians with AIDS. This may happen because, while Philadelphia uses AACO epidemiology reports on the extent of the epidemic in the region, HUD will use reports from the CDC, which appear to apportion a higher percentage of the region's AIDS cases to South Jersey than the Philadelphia reports. While the reason for the different numbers is not known, Philadelphia epidemiologists believe that their numbers are more current and accurate than the CDC numbers, which are often more "raw" and are not fully analyzed as quickly as they are locally.

However, under the HOPWA formula, Philadelphia could also see an increase in its HOPWA funding as a result of the departure of the South Jersey counties. This outcome might be possible because, under the population-based HOPWA formula, more funding might become available once the populations of the Jersey rural counties are excluded from the Philadelphia calculation. The proportion of people with AIDS in southeastern Pennsylvania, compared to the general population of the five counties, is probably higher than it is when the four southern New Jersey counties are included, according to some analysts.

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Delaney, Lands to speak in Philadelphia

In recognition of its "AIDS Education Month, Philadelphia FIGHT's Community Advisory Board will hold a Project Inform Town Meeting in Philadelphia next week featuring a report by Martin Delaney, the director of the group.

Delaney's Town Meetings, held regularly in San Francisco for the last decade and in special events across the country, are a major source of up-to-date information about the state of AIDS treatment research. Delaney will appear in a free presentation at the Graduate Hospital Auditorium on Tuesday, June 9th from 7:00 to 9:00 p.m. A reception will be held prior to the seminar at 6:00 p.m. at the same location.

Graduate Hospital is located at 18th and Lombard Streets in Philadelphia.

Delaney will also present a seminar called "Frontline Treatment Options 1998" on the following day, Wednesday June 10th, at the Church of St. Luke and the Epiphany, 330 S. 13th Street, from Noon to 2:00 p.m. Lunch will be served at that seminar.

On Saturday, June 20th, nationally known health educator Lark Lands, who is science editor for POZ Magazine, will present a day-long program called "Positively Well" at the Arch Street Meeting House, 320 Arch Street in Philadelphia. That workshop will be held from 10:30 a.m. to 4:00 p.m., and lunch will be provided.

Registration is required for Delaney's June 10th talk and Lands' June 20th presentation, Call 215-985-4448 for more information.

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