Alive & Kicking!'s fastfax

The board of directors of From All Walks of Life -- turned down in its request to share equally in the proceeds of the planned AIDS Ride benefit next June -- has reluctantly accepted an offer from the three local sponsors of the fundraising event to accept 25% of the proceeds of the Ride for distribution to FAWOL's 63 beneficiary organizations.

FAWOL will also cover about one-fourth of the costs of putting on the Ride benefit, according to sources.

The FAWOL board action came after they received a report that FAWOL's fundraising goal from last October's AIDS Walk had raised $200,000 less than originally thought. As a result of the shortfall, AIDS organizations throughout the region are facing a reduction in the amount of their grant awards pledged by FAWOL earlier this year.

Competition from the AIDS Ride, especially for corporate sponsorship, has led many AIDS service organizations in the region to question the insistence of the Ride's three main sponsors -- ActionAIDS, the AIDS Information Network, and Philadelphia Community Health Alternatives -- to limit the number of beneficiaries of the Ride event. Some FAWOL board members have said privately that they gave in to the Ride sponsors' offer of only 25% of the proceeds because of fears that the Ride might ultimately severely limit the Walk's ability to raise funds every year.

This year's Walk raised a little over $1 million for AIDS service organizations throughout the nine-county region including five southeastern Pennsylvania counties and four South Jersey counties. Ride sponsors say that they expect the Ride event to raise close to $5 million, although costs for the Ride are significantly higher. Since the Ride will also benefit AIDS service organizations in Washington, D.C., it was unclear whether the $5 million figure includes funding that will be distributed in Washington.

Meanwhile, the three local Ride sponsors have continued to refuse to comment on a variety of questions [see Alive & Kicking! #49, November, 1995] which have been raised with regard to the Ride planning, especially their unwillingness to include the Minority AIDS Project of Philadelphia (MAPP) and other groups run by people of color as beneficiaries. With the exception of the FAWOL funds, which will be shared by over sixty groups, 75% of the Ride proceeds will benefit organizations who have a long track record of refusing to employ people of color in management or leadership positions, even though most of their clientele is black or Latino.

"The message of the Ride is: only AIDS groups run by white people deserve public support," said a steering committee member of the Minority AIDS Coalition of Philadelphia and Vicinity (MAC)

James Roberts, executive director of MAPP, the direct service arm of MAC, told Alive & Kicking! that neither the Ride parent organization in California nor representatives of the local Ride sponsors have responded to numerous phone calls and correspondence in recent months seeking to discuss MAPP participation in the event. "We're not looking for a free ride; we're willing to pay our share of the costs and take our share of the risk," Roberts said. "I think it says something, something obvious, about ActionAIDS, PHCA and AIN that they won't even return our phone calls, but they work overtime trying to bring FAWOL into the process. Apparently as far as the Ride's concerned, the role of people of color is to get AIDS, while the role of white people is to get the money to run AIDS groups."

Roberts said that organizations belonging to the Minority AIDS Coalition have planned a series of activities and events to draw attention to the "discriminatory" nature of the Ride project. "We've offered the hand of cooperation and mutual support to the Ride sponsors but have been slapped down," Roberts said. "They had the opportunity to make this into an event which we could all support and which could benefit people throughout the Philadelphia area regardless of where they live or what their backgrounds. They've said no. If the Ride project degenerates into yet another focus of controversy, anger and bitterness, the responsibility lies with them, not with us."

Roberts said that his group will continue to be available to meet with the Ride sponsors to discuss minority participation "at every step in the process."

"But we also have concrete plans to do whatever we can to stop this event, if they insist on keeping in a whites-only affair."

AACO to include PWAs in case management coordination project

AIDS Activities Coordinating Office director Jesse Milan has announced that a PWA-led project to assess the training needs of AIDS case managers -- one which will focus on needs identified by case managers as well as those identified by their clients -- has been restored to AACO's plans in the development of a case management coordination system.

The PWA component had been dropped from the case management coordination plan earlier this fall. A project to provide training to AIDS case managers through ActionAIDS remains in the project, according to Milan.

Milan also said that a group of HIV-positive case managers who serve on the new HIV Commission will also be involved in hiring staff for the case management training project, as well as form the nucleus for an advisory committee which will provide oversight to the effort.

The case management coordination plan was originally developed by ActionAIDS and We The People as part of a joint effort which was originally intended for implementation last year. The project went off track after former AACO director Richard Scott, who had approved the plan, was removed from office, and AACO went without a director for over nine months.

When the project was resumed early this fall, ActionAIDS director Ennes Littrell said that she would refuse to participate if We The People remained an active partner in the project. We The People executive director David Fair said, however, that WTP was not insistent on its own organizational involvement, but was committed to ensuring that PWAs conduct the initial needs assessment which will set the early goals of the program.

"It's critical that both case managers and their clients be consulted about what case managers need to know and what their training needs are," Fair said. "In many cases clients have a different perspective on what they believe are the weaknesses of the case management system, and that perspective needs to be heard. A PWA-led assessment process guarantees that the client perspective will be included, while also assuring that case managers get what they need," he said.

"It's about time that someone in government understood that PWAs can lead and direct these processes as well as "health professionals," and they usually can do it more cheaply and cut through the bull**** more quickly," Fair said. "AACO's willingness to recognize that is a breath of fresh air, though there are still too many examples of other AACO staff continuing to refuse to respect the PWA perspective in any fashion."

Fair was referring to recent controversies involving AACO epidemiologist Erica Gollub and its lead AIDS planner, Jennifer Kolker, both of whom have sought to implement new AIDS efforts without consulting with people living with HIV/AIDS.

Delaware Medicaid program to urge prenatal HIV testing

Poor pregnant women in four states will be the target of a special Medicaid project to encourage voluntary testing for HIV virus to reduce the risk of passing the infection on to babies, according to press reports.

The Health Care Financing Administration said they will work with Medicaid agencies in Delaware, Florida, New Jersey and Rhode Island to get the message out that the drug AZT "can sharply reduce the risk of mothers' passing the virus on to babies in the womb."

The project, starting in January, will include distributing videos and brochures to women at grocery stores, hairdressers, churches and other settings in Delaware; offering counseling in jails and county health centers in Florida; mailing information to welfare recipients in New Jersey and working through HMOs and health centers in Rhode Island.

About 7,000 babies are born to HIV-infected women in the United States each year. Medicaid covers 3,000 of those mothers, and many of the rest would qualify if they applied, the government said. Medicaid also winds up paying the medical bills for nearly 90 percent of children infected with AIDS.

At a recent Philadelphia City Council hearing on local legislation that would mandate counseling pregnant women and encouraging them to be tested for HIV, Anna Forbes, a consultant to the AIDS Information Network, pointed out that forced counseling could "coerce" women, especially poor women, into getting tested for HIV against their will. That perception, she said, could lead many women to avoid getting prenatal care.

ACT UP's Julie Davids challenged the contention that the evidence supports the use of AZT as an effective treatment that helps prevent the perinatal transmission of HIV. She said that the single study which is used to encourage pregnant women to take HIV was based only on a small group of pregnant women who had never before taken AZT and who were in the second and third trimesters of their pregnancies. She said that the AZT benefit in the study was not as dramatic as has been reported, and that in any case, there was no evidence it was helpful at all for women who did not fit in to the specific categories included in the study.

Medicaid, Medicare reforms contested

The political battle over the balanced budget has major pocketbook implications for every elderly person on Medicare and every poor person on Medicaid, according to a recent analysis of the budget plan published in The Chicago Tribune.

Gauging the pocketbook effect on Americans is difficult also because costs often are hidden. If restraining the growth in the program proves too severe, for example, it could diminish the quality of health care or cause some doctors and hospitals to drop out of the system.

"It would destroy the Medicare program," said Gail Shearer, a health-care expert for Consumers Union. The White House has said that half of the Republican cuts would come from the Part B premium increase. This would do nothing to solve the impending bankruptcy in the hospital trust fund, which is funded by a payroll tax on working Americans, Budget Director Alice Rivlin said.

Republicans would reduce the growth in Medicare by $270 billion over seven years, 14 percent below what would be spent under current law. In overhauling Medicaid by converting it into a block grant to the states, $170 billion would be cut from projected spending in seven years.

Karen Davis, president of the Commonwealth Fund, a New York research organization, said the GOP would prevent much hardship on the elderly and poor if it settled for cuts half as large.

Scaling back is important considering the income of Medicare recipients, she said. Eighty-three percent of Medicare payments go to beneficiaries with incomes of $25,000 or less, and only 3 percent go to individuals or couples with incomes in excess of $50,000.

Most of the cutbacks in Medicare would be felt by providers such as doctors and hospitals, she said. Years ago, they could pass on these cuts to those with private health insurance. Now, though, insurers have become wise to such cost-shifting and have clamped down.

Shearer and Davis said the biggest threat to Medicare is the GOP plan to push more recipients into private health-care plans such as health maintenance organizations and to offer a radical new option, a medical savings account, which resembles an individual retirement account.

Rivlin said the Republican plan would not expand choice and would actually increase costs. Her reasoning is shared by Shearer and Davis. The Republican plan would lure healthier seniors away from the traditional plan into private health-care plans, they said, and the sicker ones would stay with the traditional plan.

Currently, said Davis, the government pays an average of $1,400 a year for the healthiest 90 percent of recipients. But she said the Republican plan would offer to pay a premium of more than twice that amount to cover its healthiest, lowest-cost recipients.

"It hurts seriously ill patients particularly hard," Davis said. "They are the ones with lots of physicians bills, who already have a lot of out-of-pocket costs."

Davis said that 4 million elderly people have their Part B doctors' premiums paid by Medicaid. The block grant threatens these, she said. Rivlin raises the specter of 36 million Americans who can't afford health care losing it altogether if the GOP Medicaid changes go through.

New York to cut drug payments for poor PWAs

The New York State Health Department has announced the state will no longer fund approximately 70 percent of the drugs used by low-income people infected with HIV under its HIV Uninsured Care Programs.

The New York programs are similar to Pennsylvania's Special Pharmaceutical Benefits Program (SPBP), which covers a variety of drugs for individuals with HIV/AIDS that are not affordable for the average person or not covered by existing medical coverage. The Pennsylvania program is available to individuals with incomes of $30,000 or less annually.

The program has been criticized in Pennsylvania since its inception because it has not been widely utilized. Some advocates have claimed that the state procedures for accessing the benefit are too cumbersome, and that the state has been ineffective in advertising the availability of the program. Others have criticized AIDS service organizations for not encouraging their clients to utilize the program, since leftover SPBP funds are usually re-distributed to those organizations toward the end of the state budget year.

According to New York State Health Department spokeswoman Diane Mathis, the department had to make the cutbacks because the program--which is primarily funded with Ryan White dollars from the federal government--did not have adequate funds to cover the growing number of HIV and AIDS patients. Beginning in 1996, New York will stop paying for 129 medications that it deemed "nonessential drugs that don't pertain specifically to AIDS patients," including some antibiotics for infections and pneumonia and psychotropic drugs that treat mental disorders, Mathis said. She added that the Health Department would try to help patients obtain free medications from drug companies or "spend down" their assets so they could qualify for Medicaid, which would pay for the drugs.

Duesberg responds to Lancet article

In a letter to the editor of the Lancet, Professor Peter Duesberg has responded to a commentary in which editor Richard Horton asks Duesberg--who does not believe that HIV causes AIDS--to "concede defeat" in light of yet another connection between the virus, years of life, and death.

Duesberg notes, however, that Darby et al.--the authors of the study to which Horton refers--do not detail the "specificity" of death that separates hemophiliacs with antibodies to HIV from those without. He also lists 10 points which he claims Horton asks him to stop questioning in view of the study. The University of California at Berkeley professor states that he will concede if Horton disproves two predictions. The first is that two groups of hemophiliacs, who vary only in antibody to HIV, but have the same lifetime consumption of factor VIII and other medications, will end up having the same risk of AIDS. The second prediction is that in two groups of HIV-infected hemophiliacs matched for lifetime dosage of factor VIII, with one group treated with such anti-AIDS drugs as zidovudine and the other group not treated at all, the medicated group will have a ten-fold greater mortality than the second group.

Meanwhile, a plethora of calls from people who question whether HIV causes AIDS or need to reinforce their arguments to skeptics has led the National Institute of Allergy and Infectious Diseases (NIAID) to create a pamphlet on the subject. "We found ourselves constantly trying to send people references," said NIAID Director Anthony Fauci. "We decided to put it all in one document." The 61-page booklet, entitled "The Relationship Between the Human Immunodeficiency Virus and the Acquired Immunodeficiency Syndrome," notes that "if public health messages on AIDS prevention are diluted by the misconception that HIV is not responsible for AIDS, otherwise preventable cases of HIV infection and AIDS may occur, adding to the global tragedy of the epidemic."

Abbott Labs agrees to protease lottery

More than 2,000 people with "advanced" AIDS will receive free doses of Abbott Laboratories' new experimental drug ritonavir by participating in a lottery, the company has announced.

Abbott is the last of the three pharmaceutical companies producing protease drugs to agere to make some of the drug available on a compassionate basis. Merck & Co. and Hoffman-LaRoche released the drug to several thousand PWAs last summer through a lottery process. Abbott has consistently refused to do so, claiming that it had insufficient quantities available.

Specific details of the program will be made available to patient-advocacy organizations and to physicians who treat people with AIDS shortly, according to an Abbott press release. Only limited amounts of the protease inhibitor will be available, Abbott said, because of the "extraordinarily difficult manufacturing process" involved.

AIDS advocacy groups have beseeched protease-inhibitor makers to provide the drug prior to receiving U.S. Food and Drug Administration approval because some late-stage AIDS patients could otherwise die, but until now, Abbott has maintained that it needed all of its supply of ritonavir for clinical tests.

Texas AIDS grant cancellation stirs protest

Texas State Education Commissioner Mike Moses stirred up a hornet's nest in November when he announced he was canceling the remaining three years of a five-year $1.3 million federal grant for AIDS education.

The decision sparked an uproar among legislators, educators, family planning groups, civil rights groups and students -- some of whom staged a protest outside Moses' Austin office.

Moses then decided to reconsider the decision and began negotiating with federal officials to see whether Texas could get the money without any "strings attached" regarding sex education requirements in public schools.

There is a good chance the state will end up renewing the grant, but the incident underscored a continuing battle in Texas over sex education in the classroom and the state's role in teaching students about AIDS and other sexually transmitted diseases.

"I think this issue is symbolic of what's happening," said Cecile Richards, executive director of the Texas Freedom Alliance. "People have made sex education a public battleground. I was just in disbelief that anyone, regardless of their political background, wouldn't want to do everything we could to keep a child from getting infected (with HIV). It terrifies me to think what's facing them."

In his initial decision, Moses said he could not accept the remaining three years of the five-year $1.3 million grant -- provided by the Centers for Disease Control -- because the money was restricted.

Specifically, Moses said he feared that taking the money would conflict with a new state law that requires sex education classes to stress abstinence as the only way to prevent pregnancy and disease infection.

"Our concern is that we don't want to accept a grant that tells schools how to teach sex education," said Debbie Graves Ratcliffe, a spokeswoman for Moses. "We want them (schools) to be able to teach students how they want in our communities."

Gov. George W. Bush, who appointed Moses, backed the commissioner's action.

"That fits with the governor's overall philosophy of letting Texans run Texas," said Bush spokesman Ray Sullivan.

But Richards argues that Moses' decision flies in the face of Bush's oft-stated goal of local control.

"When the state of Texas rejects (this grant) out of hand, without any public debate or discussion, and says we're not going to allow the use of this money to educate health teachers, that goes against the idea of local control," she said.

State Rep. Dawanna Dukes, D-Austin, also questioned Moses' motives. She said when the Legislature passed its education reform law earlier this year, even the conservative House member who offered the amendment requiring abstinence-based sex education agreed that there would be no problem with the CDC grant or the federal agency's guidelines on how it is spent.

"I can say that the intent of the Legislature was not as he (Moses) expressed it," said Dukes, one of the lawmakers who protested outside the commissioner's office. "There was never a stipulation by the CDC that would prevent schools from teaching abstinence only."

Dukes calls the incident with Moses a victory because it focused the public's attention on the agenda of conservative religious groups that want to limit sex education in public schools.

"Government is supposed to be open," she said. "The citizens of Texas should know what's going on. The reality is that it's education versus ignorance."

Wyatt Roberts, executive director of the conservative American Family Association, supported Moses' decision to cancel the grant.

"I disagree with a large amount of tax dollars being spent on AIDS education," he said. "I think kids can learn all about sexual diseases in biology class. We don't need a special curriculum to avoid the AIDS virus."

For Roberts, sex education classes, if there are to be any at all, should stress abstinence and end there. Catching a fatal diseases, he says, can't happen to kids who say no. "Kids know a lot about sex. What they don't know is how to say no," he said. "It doesn't take a lot of time to teach a kid to say no. The reason kids don't abstain more than they do is because they don't understand the consequences of their behavior.

"I refuse to believe there are many kids out there who don't know how to put on a condom. If they want to engage in sex, that's their business. Just don't ask the taxpayers of Texas to pay for it," he said.

Richards said she does not understand that kind of thinking. If abstinence is truly the goal, she said, then children should be taught about the possible repercussions of having sex: contracting AIDS or other sexually transmitted diseases.

"If that's not a disincentive, I don't know what is," Richards said.

Houston doctor indicted over experimental AIDS drug

A federal grand jury has returned a 75-count indictment against physician Stanislaw Burzynski and his Houston clinic charging them with administering $40 million in unapproved drugs to AIDS and cancer patients.

Capping a decade-long probe by the U.S. Food and Drug Administration (FDA), the indictment alleges Burzynski and his Burzynski Research Institute violated federal drug laws by producing and selling antineoplastin, an experimental drug originally derived from human urine.

In the indictment, the grand jury alleged that Burzynski, 53, and his clinic did not have FDA approval to administer the drug to more than 2,500 patients and defrauded insurers by filing misleading claims for payment.

"Antineoplastin has never been approved by the Federal Drug Administration for any use, and the drug has never been generally recognized by qualified medical and scientific experts as safe and effective," said U.S. Attorney Gaynelle Griffin Jones

Burzynski and his clinic have been targeted by four grand jury investigations over the past 10 years, company spokesman Dean Mouscher said. The first three adjourned without returning

indictments, he said.

"I guess the lesson is if you ask enough grand juries to indict, you'll find one that will," Mouscher said.

Burzynski's treatment of a Michigan teen-ager with an inoperable tumor was the focus of a continuing congressional probe into allegations the FDA has harbored vendettas against firms

challenging its decisions to withhold approval of certain drugs and medical devices.

The FDA, in a statement released with the indictment, said its primary mission was to assure that drugs were safe and effective. The agency did not comment on the Burzynski indictment.

Burzynski's Houston clinic was first raided in 1985. Federal investigators in 1993 seized materials from a nearby production facility, Mouscher said.

Australia to ban PWAs from military

The Australian government has announced that HIV+ people and those with other chronic diseases would be barred from joining the military.

"The function of our defense force is to protect Australia and its citizens, and our servicemen and women must be fit to serve anywhere and at anytime as directed by the government," acting Defense Minister Gary Punch said in a statement.

Punch said planned new regulations exempting the defense forces from anti-discrimination laws ensured military personnel were of "the highest medical standard."

The proposal was approved by senior ministers in the Australian government in early December.

"The Australian community expects that members of its defense force are well-equipped, well-trained, fit and free from any disease or disability," Punch said.

"The Australian defense force has genuine concern and compassion for any members who are, or may become, unfit and are unable to fulfill their roles.

"However, to recruit people with a condition or disability not compatible with operational service would not be operationally effective and would seriously impede the defense force's war fighting capabilities."

Punch said the government was not discriminating against people with HIV/AIDS and that the ban also applied to such diseases as asthma, peptic ulcers, diabetes, gout, epilepsy, recurrent migraines and sciatica.

Therapists selectively reporting unsafe sex

Therapists who work with people with AIDS are more likely to blow the whistle on the unsafe sex practices of clients who are gay, black or male, according to a study released by the University of Indiana.

A recent poll of the American Association for Marriage and Family Therapy shows people with HIV are not treated equally they admit risky behavior to their therapists.

The survey was conducted by Purdue University researchers Shobha Pais and Fred Piercy for a study supported by the Rural Center for the Study and Promotion of HIV-STD Prevention, headquartered at the University of Indiana campus.

The survey suggests that the apparent increased willingness of therapists to break confidence and tell law enforcement authorities about the sexual behavior of males, gays and blacks points out the need for legislation that clearly spells out the rights of HIV-positive people in such situations.

"Therapists are taught that if there is imminent danger to a client or someone the client wants to hurt, the therapist is ethically bound to act positively to protect the person in danger," explained Piercy.

"For example, if a client told me that he intended to kill his girlfriend and told me how he planned to do it, I would be compelled to take action and break confidence. Most licensure laws acknowledge this exception to client privilege."

He said there is a parallel "duty to warn" issue surrounding HIV-positive individuals engaging in unprotected sex. Yet few states have legislation that clearly specifies what mental health professionals should do with information about sexual behavior that might put others at risk for HIV.

The study clearly suggests that patients are not being treated equally when they tell their therapist about risky sexual behavior.

The researchers found when they presented therapists with a hypothetical situation and then varied it according to gender, race and sexual orientation, the therapists showed an increased willingness to report the behavior if the person was gay, male or black.

"Our study seems to suggest that some legislation or preventive education is needed," Pais said. "Otherwise, some clients may be discriminated against."

Harvard panel cites successes in AIDS prevention

AIDS prevention programs aimed at high-risk people are proving effective, despite perceptions to the contrary, a Harvard AIDS Institute panel has concluded.

Convening on World AIDS Day, the panel cited successful programs for intravenous drug users, high-school students and poor inner-city women.

"We don't have to wait for a cure to see positive results of intervention," said Dr. Ronald Valdiserri, deputy director of the division of AIDS prevention at the U.S. Centers for Disease Control and Prevention. "But some people still think HIV prevention doesn't work."

Valdiserri said a recent study by the Office of Technology Assessment found that sex and AIDS education for school-aged youths does not increase sexual activity nor does supplying sterile needles to intravenous drug users raise the incidence of drug use.

He also cited two separate studies which appeared in the New England Journal of Medicine on couples in which one partner is HIV infected, which showed that consistent use of condoms prevented HIV transmission to the other partner.

"The scientific basis clearly underscores the fact that prevention does work," Valdiserri said. "If HIV prevention is consistent with the norms and values of the group on which it is used then it does work."

However, health workers who aim to set up AIDS prevention programs face a daunting task. Such programs must be tailored to age, ethnic and gender-specific groups, among other considerations.

"Current health models don't let us look at gender in any meaningful way," said Hortensia Amaro, professor of social and behavioral sciences at Boston University and a founder of the Latino Health Institute in Massachusetts

AIDS claims more victims than violent crime - UN

AIDS continued to be the leading cause of death in the past year for people under 45 in the

United States and Western Europe, claiming more victims than violent crime, the head of the U.N. anti-AIDS program said on World AIDS Day.

"In the past year, the World Health Organization estimates that over two million men, women and children became infected with HIV. And close to three-quarters of a million people who were infected years ago died an untimely death," Dr Peter Piot, a Belgian physician, told an AIDS Day symposium at U.N. headquarters.

The epidemic had so far claimed more than four million people in what should have been their prime of life, he said.

"In the United States and Western Europe, AIDS continued to be the leading cause of death for people under 45 -- a bigger killer than violent crime, which gets far more media attention," he said.

Piot, executive director of UNAIDS, which coordinates the efforts of a number of U.N. agencies, said experience showed that ways had been found to care for people with HIV and help uninfected people remain free of the virus. "But overall, we are not using these approaches well or enough. HIV continues to spread at the rate of over 6,000 infections a day -- above all in the developing world."

Referring to factors that created vulnerability, he said more progress was needed in achieving equal rights for women in the legal, economic and educational spheres. "Otherwise they may not be in a position to leave or negotiate safer sex with a partner who is putting them at risk of HIV," he said.

"We need to help economically disadvantaged people, otherwise they may be unable to afford protective materials like condoms or health care for their AIDS-related illnesses."

Another important factor was human rights, Piot said, noting that people who feared loss of homes or jobs for having AIDS might hesitate to get tested, seek care or acknowledge their infection to their partners.

"Human rights are intrinsically important, but protecting those rights is also a powerful tool for preventing new HIV infections and ensuring that infected people and their families get appropriate care and support," Piot said.

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