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Issue #182: June 21, 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 wtp@critpath.org and type the message SUBSCRIBE in the message section. Sources for some articles in this issue include Nature, New York Times, Philadelphia Inquirer, Reuters, Science ."Breakthrough" excites researchers on vaccine research; FIGHT trial to begin
Court affirms rights of HIV prisoners
Commission limits priority choices
fastfax lies, again
Vaccine trial to enroll first participant in Philadelphia
"Breakthrough" increases hope for vaccine
Researchers have announced that they had gotten their first good look at the physical structure of a key protein used by HIV to invade the body's disease-fighting T-cells, and found it is a "viral Houdini" that shifts shape to evade the body's defenses.They managed to image the crystalline structure of the gp120 protein the virus uses to break into the immune system cells it attack -- an important step toward designing new drugs and vaccines to fight it.
Dr. Joseph Sodroski and colleagues at Harvard's Dana-Farber Cancer Institute and New York's Columbia University said they found some surprises, including some formidable defenses and an ability to change shape to elude the body's defenses.
"We discovered that a large part of the gp120 surface is protected against attack by a dense army of carbohydrates and by an amazing capacity to change shape," Sodroski said in a statement. "HIV is a viral Houdini."
He added in a telephone interview with Reuters Health Information Service that "It's probably changing shape as part of its natural function. We also know that different strains vary ... so it is a quick-change artist in that sense."
The findings, published in both the science journals Nature and Science, show that gp120 uses loop-shaped regions to mask its critical locking elements until the last minute.
It also has a coating of sugar molecules that act as a shield against antibodies -- immune system proteins that attack invaders.
But the structure also reveals some potential weaknesses that could be targeted by drugs or vaccines, including the structure that HIV uses to attach to CCR5, one of the receptors or cellular doorways the virus uses to enter cells. Blocking this structure could stop HIV from infecting cells -- which may be the mechanism on which both a cure and a vaccine can be found.
One notable feature seen in the new pictures is that part of the CD4 receptor pokes into the base of a large cavity inside the probe.
''When I first saw that, I said, 'My God, that's the cure for AIDS,' '' said Dr. Peter D. Kwong of Columbia University, meaning that the cavity is an obvious target for drugs that might disrupt the interaction between the probe and CD4. Dr. Kwong has been working on the structure of the probe protein since 1990.
The protein gp120 is one of the main targets of vaccines against the virus, and knowing about its structure can help scientists physically design a version of gp120 that will stimulate the body's immune system better.
"Studying the gp120 crystal's structure can tell us a lot more about how the virus locks on to immune system cells," Dr. Anthony Fauci, director of the National Institute of Allergies and Infectious Diseases (NIAID), said in a statement.
"We now have specific target sites on which to focus in developing new drugs and vaccines."
Advanced equipment lets scientists "see" exactly what drugs look like physically, as well as the microbes or natural body substances they act on. They can match the physical structures of the drugs to the physical structures of the microbes, so they fit together perfectly.
The NIAID said the research could indicate that some of the vaccines under development against HIV might not work.
For example, South San Francisco-based VaxGen Inc.'s AIDSVAX vaccine -- the first HIV vaccine to enter final clinical trials in people -- uses gp120.
"Gp120, which is this VaxGen approach, has been tried before and it has been very disappointing and I think that is something we can expect," Sodroski said. He said it took the teams five years to make the protein form a crystal structure that could then be imaged using X-ray crystallography.
"It's easy to build crystals out of molecules that are uniformly shaped, but gp120 has all these sugars on it," he said.
"It has these variable loops on the surface that are probably moving all over the place. It's like trying to build a house out of bricks that aren't square. Gp120 was terrible in terms of getting it to crystallize."
Other scientists, however, are not so sure that the upcoming vaccine trials will be disappointing.
Dr. Don Francis, the president of VaxGen, the company now testing gp120, responded by saying that tests in chimpanzees showed that the vaccine protected the animals from very high doses of virus.
''It works in a chimp, it's safe in humans, and it produces a better immune response in humans than in chimps,'' Dr. Francis said. ' 'To sit back and wait for more lab tests would, I think, be unconscionable.''
"Speculation by scientists, in reaction to the first cystallography pictures of the HIV envelope protein gp120, that an AIDS vaccine based on gp120 proteins is unlikely to work is premature and incorrect," added Philip W. Berman, VaxGen's chief scientist and Vice President for Research.
"To the contrary, the data, which indicate that the virus has a two-target strategy, actually confirm the importance of gp120 in inducing a protective immune response and, indeed, validate the scientific basis on which VaxGen has developed its AIDSVAX vaccine. Our vaccine was specifically designed to address both these targets.
"VaxGen's recent finding that antibodies induced by our vaccines neutralize both T-cell and macrophage tropic viruses confirms the approach we have used in developing AIDSVAX and is, in indeed, in agreement with structural data of Dr. Joseph Sodroski, an author of the new report."
On June 3rd, VaxGen announced that it had received clearance from the U.S. Food and Drug Administration to begin Phase III clinical trials in the United States of its AIDSVAX vaccine against HIV. The U.S. trial, designed to determine the efficacy of the vaccine, is expected to begin next week in Philadelphia and other sites and will use 5,000 volunteers in North America. The company also anticipates beginning Phase III trial of a separate formulation of AIDSVAX in Thailand later this year, following approval by the Thai Ministry of Health.
The Philadelphia trial will be managed by Philadelphia FIGHT, the local community-based clinical trials program. FIGHT is expected to enroll the first trial participant in the nation early next week.
Court affirms rights of HIV prisoners
In a landmark decision, the U.S. Supreme Court has ruled that the Americans with Disabilities Act (ADA), the federal legislation which requires equal treatment to people with disabilities, applies to incarcerated people as well.The decision will likely benefit a group of people living with HIV/AIDS who are perhaps the most disenfranchised of all PWAS -- those who are incarcerated and are usually ineligible for specialized programs to help people living with HIV disease.
Prison health care programs are, in most cases, significantly worse than those available in the community, and countless PWAs have complained that when they are incarcerated, they are unable to obtain even basic diagnostic services or medications for HIV disease and its various manifestations.
In a Pennsylvania case, the Supreme Court ruled unanimously yesterday in a case that state inmates are protected by the federal law barring discrimination against people with disabilities.
The decision means state prisons and local jails may be required to make "reasonable" modifications to give disabled inmates equal access to educational and vocational programs, medical services, prison industries and recreational activities.
The court acted after hundreds of suits filed by prisoners across the country under the ADA. Most states have taken the position that the ADA should not apply to prisoners, and that Congress overstepped its authority by ordering state prisons to apply the ADA to them. The Supreme Court action will likely result in even more lawsuits and major improvements in how prisons treat prisoners with disabilities.
City, county and state governments have complained that the extension of the ADA to prisoners will cost millions of dollars as "highly litigious" inmates seeks its protection. Prison officials have also said that prison populations contain "a much greater percentage of persons with an ADA-covered disability than the population at large," they said.
State and local government organizations cited, for example, a survey showing that in 1992, the rate of AIDS in prison was 20 times higher than in the general population.
But the justices, after examining the language of the law, readily concluded in Pennsylvania Department of Corrections et al v. Yeskey that the ADA covers state prisons.
The law says individuals may not be denied "the benefits of the services, programs or activities of a public entity" because of their disabilities. State prisons, Justice Antonin Scalia wrote for the court, "fall squarely within the statutory definition of 'public entity.' "
The winner of the case was Ronald Yeskey, who was sentenced in 1994 to serve up to 36 months in prison for drunken driving, escape and resisting arrest. Yeskey had been prohibited from entering a boot camp program because of high blood pressure. His attorneys said that if he had been allowed to enter the boot camp, he could have earned release from incarceration within six months.
Yeskey argued that his exclusion violated the ADA. A federal district judge found the ADA inapplicable to state prisons, but a Philadelphia-based federal appeals court reinstated Yeskey's claim. Although since released from prison, Yeskey was seeking damages.
While the court disposed of the statutory question, it did not address a constitutional issue that could block ADA suits: Did Congress exceed its powers in applying the ADA to state prisons?
"We continue to believe Congress cannot exercise federal power over state prisoners sent to state facilities because they violated state [criminal ] laws," said Ohio State Solicitor Jeffrey Sutton, who filed a brief on behalf of 33 states and the District of Columbia.
Scalia said the Supreme Court could not delve into the constitutional question because that issue had not been raised in the Yeskey case. The justices, though, have been asked to consider the law's constitutionality in a pending appeal from California.
While most state prisons claim they have already done much to accommodate the special needs of disabled prisoners, lawyers for citizens with disabilities said discrimination in state prisons occurs frequently.
Stephen F. Gold, a lawyer for a Pennsylvania coalition of disabled people, cited dozens of cases and news accounts of disabled prisoners who suffered discrimination.
In a legal brief, he told the court of a paraplegic in Alabama who was "forced to crawl around [ his ] cell," of deaf inmates in New York who were excluded from academic and vocational programs, of a woman with AIDS who was segregated and denied prison privileges in California, and of a Pennsylvania inmate with Tourette's syndrome who allegedly was "ridiculed and assaulted by inmates and guards who did not understand his condition."
The National Association of People with AIDS (NAPWA) strongly supported the court's ruling.
The Americans with Disabilities Act "has had an enormous impact on the ability of people living with HIV and AIDS to fight discrimination and exclusion in order to be treated fairly and live with respect and dignity, the group said in a statement released after the Supreme Court decision.
"Incarcerated people living with HIV have relied upon the ADA to enforce their right to fair and equitable treatment. This decision reinforces the rights of all people, including persons in federal and state prisons, to be free of discrimination on the basis of their disability," said A. Cornelius Baker, Executive Director of NAPWA.
In this session, the Supreme Court has also heard a case, but has yet to rule on Bragdon v. Abbott, which involves the right of individuals with asymptomatic HIV infection to be protected under the ADA. NAPWA has also joined an amicus brief in this case, in support of Sidney Abbott, asking the court to affirm that persons with asymptomatic HIV infection are protected by the ADA.
Commission limits priority choices
The Care Committee of the Philadelphia HIV Commission, acting on the recommendation of city and federal officials, has limited the options of people involved in the process of setting priorities for next year's AIDS funding by requiring that three service areas be ranked the highest.The three areas are primary medical care, medications, and case management services.
Participants in meetings of various committees and caucuses, which have been meeting over the past several months, have been informed that in their ranking of priorities for AIDS funding -- which ultimately determines how much money is allocated to each of the service areas -- these three areas must be treated as "core services," with the priority-setting process limited to ranking the relative importance of other services, such as nutrition, counseling, outreach, housing, etc. The three "core services" received the bulk of city and federal AIDS funding last year.
The Commission's Consumer Caucus, which met this week but was unable to get enough participation to meet the Commission's representation targets, will hold a second meeting soon to consider its own recommendations of where AIDS funding should be concentrated.
City officials have said they believe that assuring that primary medical care, medications and case management services are protected in the priority-setting process will strengthen the city's ability to compete for additional Ryan White CARE Act Title I funding in an application that is due in the fall. The Health Resources and Services Administration (HRSA), the federal agency which administers Title I funding, holds an annual competition among cities and regions to determine where it will distribute close to a billion dollars of AIDS funding. Title I funding is limited to supporting direct care services to people living with HIV/AIDS, while the U.S. Centers for Disease Control awards funding for HIV prevention education programs. In our school you can learn ukrainian in Kiev
The yearly competition, which itself has been severely criticized by AIDS advocates, is usually heated, with HRSA often making significant shifts in funding in each year. Many advocates have complained that HRSA's annual process inhibits the stability of AIDS services, especially since the community-based priority-setting process has, in many cities, resulted in political jockeying that often strays far from what is traditionally seen as health planning.
Grantees, such as the city's AIDS Activities Coordinating Office, which administers Title I funds for nine counties in southeastern Pennsylvania and southern New Jersey, informed the Commission's Care Committee that major changes in priorities set over the past year would unnecessarily complicate and delay the often long and confusing contracting process for agencies providing AIDS services. AIDS service organizations have long complained that the constant uncertainty about their funding makes it hard to maintain consistent service delivery.
While most of the Commission's committees and caucuses have accepted the Care Committee restrictions, others have complained that it is unfair to set a pre-condition on what the service priorities should be and that such a decision should have been debated after the caucus priority-setting process was completed, rather than before.
Because the Consumer Caucus meeting did not attract enough participants, Commission staff asked a group of consumer board members at the June 17th meeting of the HIV Commission to endorse the ranking of priorities which came out of the small group of consumers who had attended the caucus meeting earlier in the week. Because a consensus to support the outcome of the truncated caucus meeting could not be obtained, a second meeting of the caucus to set priorities has been scheduled.
Robert Capone, interim executive director of We The People and a member of the HIV Commission, objected to the condition that the three "core services" not be part of the priority-setting process.
"It's not about whether these services are the most important," Capone said. "To me, it's about whether this is a real process that really allows consumers to have their say or whether it's merely window-dressing to rubber-stamp decisions made by others. We should have a chance to set whatever priorities we think are right, and then compare them with what others think to reach a consensus that represents everybody."
"Obviously, there aren't many people with HIV/AIDS who are going to disagree that primary medical care and medications are among the most important things we need. But the whole point of consumer involvement in this process is to make sure that the system listens to what we think. I'm tired of other people deciding that they know what's best for us before they give us a chance to speak for ourselves. Where does it say that anybody has a right to dictate to us what we think before we even have a chance to think it?"
Capone said that the efforts of groups like the HIV Commission and The Philadelphia AIDS Consortium (TPAC), which distributes Title II funds, to claim credibility by relying on consumers to set priorities, are undermined by the restrictions set by the Care Committee.
"They always talk about how sensitive they are to consumers, but in the end it's all about manipulating people and dictating to us. It's our right as the people this system is supposed to be about to dictate to them, not the other way around."
Capone said that the Care Committee decision reduces the true role of consumers to one of "mere tokenism."
"This year they say it's three priority areas. What will it be next year, five? And the year after that, should we just stay home? The bottom line is that decisions like this belong to us, and the system should have the confidence in us to know that only consumers don't have any agenda but what is best for all of us. Why is that so threatening? Why can't they just let the process work?"
fastfax lies, again
by David Fair
Editorial Comment
The eight-year history of the Philadelphia AIDS Consortium is replete with efforts by TPAC staff to sow dissension among people living with HIV/AIDS so that TPAC staff -- who, after all, always know what's better for us than we do -- can work their will on what happens to the millions of dollars TPAC allocates for AIDS services every year.On June 16th, TPAC executive director Larry Hochendoner proved that he was earning his $90,000+ per year in salary and expenses by launching a direct attack on fastfax for a "misleading and inaccurate" report on recent allocations decisions related to state and federal AIDS funds distributed by the organization.
The statement, contained in a publication called FYI...From the AIDS Consortium (which, incidentally, only seems to appear these days when our friend Larry decides he needs to do a PR spin on something we've reported in fastfax) responds in detail to many of the issues we have raised in recent issues about the TPAC funding. We're not going to bore you again by replying in kind -- Larry's article contains little new information that we didn't report in fastfax -- and we think anyone reading our reports and Larry's statement together won't have much difficulty figuring out which of us is relying on facts and figures and which of us is trying to rework those facts to distract the consumer community from what's really happening. врати номер едно!
If you do compare our reports with Larry's reply, look especially for the things Larry leaves out. They're pretty obvious. They were also the main points of the original fastfax reports, so his silence on them is particularly deafening.
There are a couple of other things Larry forgot in his June 16th diatribe:
--In FYI, readers are told that fastfax has charged this, condemned that, called this or that irrational. If you look at our reports, however, you'll see that we were simply reporting what others were saying -- that's our job as a PWA newsletter. Rather than respond to the growing chorus of criticism directly to those raising the criticism, Larry decides to attack us for being the messenger and for having the gall to quote someone other than himself. Typical TPAC. Typically wrong. Our advice to Larry is: talk to your own providers when you have a problem with what they say, don't blame us for letting other PWAs know they said it.
--In FYI, you'll also find a detail or two that we did get wrong. Most important, that One Day At A Time's Southwest Philadelphia center -- the only dedicated AIDS service site in that entire community, which has the highest per capita number of AIDS cases in the city -- was denied funding by TPAC. It turns out that isn't true; ODAAT didn't even apply. ODAAT says that they were told they didn't have to apply by TPAC staff. Who's telling the truth? Who knows. Probably just another miscommunication, such as PWAs are always told to tolerate when the red-tape artists fuck things up and PWAs suffer.
But Larry forgot to tell his readers, and his Board, an important other detail: this time, fastfax sent him the text of the article before it was published, and asked him to correct any factual misstatements. We obviously had the wrong information about ODAAT's situation, but Larry said nothing to correct it when we ran it by him first, and saved it until he could use it to slam the only independent voice for PWAs in the region. Interesting timing. In the final analysis, if we go to a source to confirm a fact and that source confirms it, what else are we to do but report it as fact?
With the relatively moribund PWA advocacy in Philadelphia these days, it's no surprise that public relations and manipulation of well-meaning but often inexperienced consumers has again become the rule of the day for AIDS planners and funders. But Larry's attempt to intimidate fastfax steps past even TPAC's sad history of PWA co-optation and manipulation. Save your paper next time, Larry. And there will be a next time, as we search out even more facts about how inane much of TPAC's decisionmaking process has been of late. Because fastfax will continue to believe in the basic principle that has informed all of our three-and-a-half years of publication:
The truth shall set you free.
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