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Issue #236: July 2, 1999
FASTFAX is available by fax in the 215 and 610 area codes at no cost, by mail anywhere for 20.00 per year, by calling 215-545-6868, and on the fastfax index page. Information in fastfax is drawn mostly from secondary sources; people living with HIV/AIDS should share information of interest to them with their primary care provider before making treatment choices. For more information on HIV medications and treatments, contact Kiyoshi Kuromiya of the Critical Path AIDS Project, 215-545-2212 or by email to The presence of the name or image of any individual in fastfax should not be construed as an indication of their HIV status or sexual preference unless specifically stated. Questions or comments should be directed to Editor, fastfax, 425 S. Broad St., Phila., PA 19147-1126 or by email to
In This Issue:
Richman acts on personal care crisis
FDA approves new Norvir capsule
PA legislature seeks exemption of PWAs, others from HealthChoices
400 greet Gore in Africa drug protest
AIDS care lags for minorities, poor
Health Commissioner Estelle Richman has announced steps to help Girard Medical Center resolve a financial crisis that threatens the region's only nursing home for people with AIDS, and to begin developing new services for people who currently cannot be served in a nursing home or regular personal care facility.
Richman's plan includes awarding funds to the Girard unit to help defray costs related to several people with AIDS with behavioral health problems, and putting together a financing package to support a new eight-bed facility being developed by Calcutta House.
The health department will also try to utilize some of this year's Ryan White CARE Act Title I grant, which was originally set aside for behavioral health services, to help cover immediate "attendant care" needs of people with AIDS for whom there is no room in existing personal care facilities.
Richman's actions follow several months during which the Girard unit has threatened to close admissions to people with AIDS because the hospital said it was losing too much money on their care.
Sources at North Philadelphia Health Systems, the parent corporation of Girard Medical Center, told fastfax that the latest financial reports on Girard's continuing care unit, which includes 18 beds set aside for people with AIDS, are particularly bleak. These sources said that George Walmsley, chief operating officer of the continuing care unit, is planning on renewing efforts to close the AIDS unit completely unless there is an immediate effort to find new funds.
The closure plans were deferred last winter, when Richman and representatives of several AIDS service organizations agreed to try to find ways to relieve the financial pressure on the unit.
Girard claims that it is unable to continue operating the AIDS unit because the health of the residents often improves, making them ineligible for skilled nursing care. However, because Girard has had very few discharge options for these residents, it keeps them on the unit even though no one is reimbursing for their care.
Calcutta House, the only facility in the region specifically designed to provide what is alternately called "intermediate" or "intensive personal care," does not have enough beds to keep up with the growing demand for the service. Keystone House, a hospice program in Montgomery County, only serves residents who are eligible for hospice benefits - which are limited to those expected to die within six months.
Richman, the city's AIDS Activities Coordinating Office (AACO), the AIDS Law Project, ActionAIDS, We The People and the Quaker Ministry for People with AIDS have been meeting to look for ways to find funds to support new services for people with AIDS whose health condition is not technically serious enough to qualify them for nursing home or hospice care, but who are too sick to live without constant support.
Among the twelve current residents which Girard claims no longer qualify for skilled nursing services are four who are believed to have serious behavioral health disorders. Richman has now offered Girard funding from the city's Behavioral Health System for their care. The offer, made over a month ago, has still not been implemented, however, while the city awaits a plan from Girard and a budget for the new program.
Richman told the ad hoc committee with which she has been meeting on the issue that once Girard establishes a way to care for the PWAs with behavioral health problems, the AIDS service continuum can expect that the four beds being created would be permanently available.
Richman also told the committee that she intends to ask the Philadelphia HIV Commission to allocate a portion of the city's Ryan White Title I grant to support these services. Last week, the priority-setting committee of the Commission turned down a similar proposal after Patricia Bass, who is co-director of the city's AIDS Activities Coordinating Office, opposed the proposal.
The Commission is responsible for determining priorities for over $16 million in Title I funds.
Richman did not comment to the committee on Bass' action, but pledged to advise the Commission that the city does, in fact, support the use of Title I funds for this care.
Richman told fastfax that she hopes that the Commission will allocate at least 1 or 2 percent (between $160,00 and $320,000) of next year's Title I allocation for intensive personal care services. She said that this funding, matched with some state funding and a HOPWA allocation, would be enough to support the eight beds at the new Calcutta House facility for up to one year.
Meanwhile, Dale Grundy and Michael Hinson, co-chairs of the Commission, in a letter to fastfax, said that they believe that Commission members were unclear on the proposal before them when it came up for a vote, and that the Commission members will, in fact, support developing intensive personal care services for people with AIDS with the support of some Title I funds.
They blamed Capone for not providing a formal presentation on the crisis prior to the meeting or at any of the caucuses or information sessions which the Commission held in the weeks preceding the vote. "Mr. Capone is a Commissioner who knows the steps for getting information out during priority setting. All it takes is a copy of the proposal and a request that it be distributed."
Capone confirmed to fastfax that he had not made a formal presentation to educate the Commission members or community representatives who have participated in this year's priority-setting process.
"I did however, communicate this need to the community through an editorial in fastfax and Alive & Kicking! several weeks prior to allocations," Capone said, "and I discussed this problem with several commissioners and commission staff in the weeks preceding the allocations meeting." Fastfax, which reaches over 1600 people every week, has reported several times on the growing crisis. Alive & Kicking! has over 8500 subscribers.
"I wasn't aware that it was my personal responsibility to do the job of Commission and AACO staff in providing the Commission with information and data on this crisis," Capone said. "We spend hundreds of thousands of dollars on planning and administrative staff, but apparently none of them have had the time to address a crisis affecting the most desperately ill people with AIDS. I guess if I had been a consultant, paid to complete a fancy needs assessment, maybe they would have listened."
Capone also said that Richman had led the ad hoc committee meeting on this issue to believe that AACO would advise the Commission of the committee's work and of the health department's support for his proposal. "I think none of the controversy would have occurred if Pat Bass had fairly reported the department's position," he said. "Obviously, neither Pat nor myself did a good enough job of articulating the urgency of this crisis."
Capone said he respected the criticism of Grundy and Hinson, although he questions "a process that is limited to only the information that an individual Commission member brings to the table."
"I think it's a shame that the process of priority-setting is ultimately influenced only by those who have the energy and time to show up at what sometimes seems like hundreds of meetings," he said. "It's basically unfair to say that the only priorities we have for Title I are those the Commission members themselves do all the training, technical assistance, data collection and reporting on. I don't think it's unfair to ask that the Commission and AACO staff, who are supposed to help us understand what's going on, give us the information we need to do the job."
The crisis in intensive personal care and skilled nursing services "has been around for years," Capone added. "What are our planners doing if they're not helping us understand these urgent needs? In the end, is it right to deny critical medical and nursing services to people with AIDS just because I personally didn't do the job of the Commission and AACO staff in educating everyone on the problem? What do we pay all that money for?"
Grundy and Hinson told fastfax that they supported the need for new intensive personal care services and will recommend that the full Commission, which still needs to take a final vote on Title I priorities for the year 2000, include the services in its priority category of primary medical care, which gets the largest percentage of Title I funds, or the home health category.
FDA approves new Norvir capsule
Nearly a year after Abbott had to halt the sale of the capsule form of its protease inhibitor, Norvir (ritonavir), because of production-related problems, the company has announced that it has won Food and Drug Administration permission to sell a soft-gelatin capsule form of the AIDS drug.
Since last July, Norvir has been available only in liquid form, but Abbott said the newly approved version would be available for consumer use as early as next week. The capsules can be kept at room temperature for 30 days, but Abbott is encouraging patients to keep the product refrigerated.
Norvir is approved for twice-daily use and should be taken with food, if possible. Norvir soft-gelatin capsules were also approved for marketing in Switzerland in June.
The approval of Norvir soft-gelatin capsules follows intense reformulation work at Abbott after an announcement in July 1998 that a new crystalline structure of ritonavir, which affected how the semi-solid capsule dissolved, would interrupt the production of Norvir semi-solid capsules.
The soft-gelatin capsule has undergone a number of tests to ensure its stability. Norvir liquid has allowed patients to continue therapy during the period of time when capsules were not available.
"The availability of the new Norvir soft-gelatin capsules will be welcome news for many patients," said Cal Cohen, M.D., research director, Community Research Initiative of New England. "The twice-daily dosing with Norvir is important. Also, patients choosing to switch from Norvir liquid to the new capsules should experience a relatively smooth transition."
PA legislature seeks exemption of PWAs, others from HealthChoices
Pennsylvania's Legislative Budget and Finance Committee, a committee jointly created by the state House of Representatives and the Senate, has recommended that an exemption for people with "complex medical needs" be granted for Medicaid recipients until the HMOs participating in the HealthChoices program are given higher reimbursements for patients with acute health care needs.
The committee noted that such a policy was necessary to avoid penalizing plans that offer the best care and attract the most acutely ill patients. In response to the committee's report, the state Department of Public Welfare said that it would need until 2002 or 2003 to gather enough information to change the HealthChoices payment system.
Philadelphia area AIDS activists called for such an exemption over three years ago, when HealthChoices - the state's experiment with managed care for Medicaid recipients - was implemented in southeastern Pennsylvania.
The joint committee's recommendation comes as HealthChoices is poised to expand to cover 277,000 Medicaid recipients in southwestern Pennsylvania, including the Pittsburgh area.
For months, the Pittsburgh-based Consumer Health Coalition and other advocacy groups have been raising alarms about how patients who are heavy users of the health care system will be affected by the shift to managed care, which began July 1st. The advocates for low-income health consumers claim the change will be so disruptive for these special patients that they should be exempted from being automatically enrolled in the HealthChoices program.
"What we recommend is that the [Department of Public Welfare develop a plan] with a payment amount that reflects the health of the individual, so that for someone who has, say, HIV/AIDS, the plans would be reimbursed more for [that patient] than for a healthy individual," said Philip R. Durgin, executive director of the committee. "Unless or until that happens, there will be this problem of adverse selection ... where the plan that's providing the best services really gets penalized."
In the Pittsburgh area, for example, there are three Medical Assistance HMOs -- Best, Gateway and Med-Plus. Under HealthChoices, each plan will receive a monthly payment to cover the health care costs of each Medical Assistance recipient, whether or not the individual visits any doctors or hospitals.
To survive financially, each HMO must have a balance of sick and well patients. But if word gets out among Medical Assistance recipients that one of the three plans offers better benefits for patients with high-cost health problems, expensive patients are expected to flock to that plan.
"There's not much of an incentive to provide more than the minimum quality of care," Durgin said.
Giving HMOs a higher per-member payment for individuals with complex health-care conditions would give the health plans an incentive to provide good care, he said. (Pittsburgh Post-Gazette)
400 greet Gore in Africa drug protest
Over 400 people living with HIV/AIDS and activists from the city's African American and gay communities attempted to confront Vice President Al Gore at a demonstration outside of a $1000-a-head fundraiser last week, but were kept over a block away by a strong show of force by Philadelphia police.
The demonstration was organized by ACT UP Philadelphia, and was co-sponsored by We The People, One Day At A Time, the Philadelphia Lesbian and Gay Task Force, and other groups.
Gore is under attack for his support of efforts which would limit the ability of African countries to develop generic forms of AIDS drugs to reduce the cost of AIDS medications on the continent. Over 23 million Africans are believed to be infected with HIV. Gore instead supports U.S. regulations which seek to protect the patent rights of U.S. pharmaceutical companies, who claim they need to sell the AIDS drugs at high prices to recapture their research and development costs.
Gore, wary of appearing to be siding with the drug industry in an emotion-laden dispute, has written to the Congressional Black Caucus' chairman that he does not oppose South Africa's attempts to produce or obtain generic AIDS medicines as long as those efforts do not violate laws protecting patents.
Gore acted after demonstrators from ACT-UP began showing up at his campaign rallies, saying Gore was siding with pharmaceutical companies at the expense of Africans with AIDS. The issue has created a policy dilemma for Gore, and aides worried it would haunt his bid for the Democratic presidential nomination.
"I want you to know from the start that I support South Africa's efforts to enhance health care for its people," Gore wrote in a June 25th letter to Rep. Jim Clyburn, D-S.C. "I support South Africa's effort to provide AIDS drugs at reduced prices through compulsory licensing and parallel importing, so long as they are carried out in a way that is consistent with international agreements."
"What does that mean?" asked Dr. Peter Lurie, an activist with Public Citizen who has performed AIDS research in South Africa. He said if Gore is saying that South Africa's law was inconsistent with international law, "then this letter means absolutely nothing."
Gore's letter was prompted by a letter the day before from Clyburn, who chairs the black caucus. He asked Gore to state clearly the position he took with South African President Thabo Mbeki regarding South Africa's Medicines Act, which allows South African companies to replicate the U.S. drugs despite the U.S. patent protections.
Donna Christian-Green, the Virgin Islands' elected delegate to Congress, had heard AIDS activists' claims that Gore was helping pharmaceutical companies thwart South Africa's efforts to bypass U.S. patent laws so it could get AIDS medicines at a lower cost.
"All of us got a bit concerned. We thought we generally were on the same page with him on this issue," Clyburn said. He said he thought the AIDS activists had unfairly targeted the vice president, and now feels "my suspicions as to what this was all about seem to have been well-placed."
Chris Lahane, a Gore spokesman, said, "This is one of those situations where emotions are obscuring what the real information is. The vice president supports efforts to provide South Africa with AIDS drugs at reduced prices. He's working to create a framework to make that happen."
Christian-Green, a family physician for 21 years, said the caucus was satisfied with Gore's explanation. "We would hate to have the ACT-UP groups turn voters away from a person who would be a good candidate," she said.
Nevertheless, ACT-UP promised to keep protesting and said it would challenge other presidential candidates on the issue too.
"This statement is smoke and mirrors. We want action," said Asia Russell of ACT-UP Philadelphia, which sponsored the Philadelphia protest. "We plan to continue our work against Gore until he does more than simply issue a statement about this yearlong effort ... to do the dirty work of the pharmaceutical industry."
South Africa's 1997 law granted the government unspecified power to obtain cheaper AIDS drugs for the country where more than 3 million people are HIV positive and 2.5 million children are expected to be orphaned because of the virus over the next 10 years.
About 40 pharmaceutical companies in South Africa, Europe and the United States are challenging the law in South African courts, fearing it may be used in a way that violates patent rights.
Gore said in his letter that the Clinton administration expressed concerns about the law's vagueness and asked the South African government to assure it would "not undermine legal protections" for patent holders.
According to Gore aides, the misunderstanding began in February after the State Department submitted a report on U.S. efforts to get the Medicines Act amended. A provision inserted into last year's budget required the report as a condition for releasing U.S. aid to South Africa.
In April, drug industry lobbyists asked the Clinton administration to impose trade sanctions on South Africa for passing a 1997 law that could allow both practices. U.S. officials instead put South Africa on a trade "watch list" that signals objections. Gore said that sanctions "would have undercut our cooperative efforts to resolve this issue." But in a State Department memo in February, officials said Gore made protection of pharmaceutical patents "a central focus" of talks with South Africa's then-Deputy President Thabo Mbeki. The memo galvanized AIDS activists, who said that the memo confirms their fears that Gore is, in fact, seeking to threaten South Africa into giving in on the patent issue.
Many of Gore's top advisors are current or former drug company lobbyists. Tony Podesta, top Gore advisor and brother of Clinton's chief of staff, is currently the contracted lobbyist for PhRMA (Pharmaceutical Research and Manufacturer's Association) and many other large U.S. drug interests. Tom Downey, close Gore associate and former congressman, lobbies for Merck pharmaceuticals. Gore fundraiser Peter Knight is a former Schering-Plough lobbyist.
Rep. Jesse Jackson, Jr., an Illinois Democrat, has introduced a bill that would prohibit the Clinton Administration from retaliating against any African country that uses these international trade provisions to allow local companies to distribute generic versions of AIDS drugs at discounted prices.
A Gore spokesperson said that the Vice President and South Africa's new President Thabo Mbeki have agreed to negotiate a settlement that would satisfy both countries.
Meanwhile, conservative syndicated columnist Arianna Huffington has written that the controversy "provides an excellent object lesson about the rotten core of American politics: how our campaign finance system allows powerful special interests to secretly dictate policy, even when the lives of millions are at stake." She writes that Gore is "wedded to a trade policy that is anything but humanitarian," and charges that many South Africans "have perished while the vice president has been figuring out the controlling legal authority over AIDS drugs." She notes that an upcoming American Prospect article will expose "'K Street Gore's interlocking directorate' of aides, friends, advisors and lobbyists moving seamlessly between the pharmaceutical industry and his inner circle."
Huffington concludes, "Money has talked louder than the cries of millions of African AIDS victims. But the chants of the protesters are amplifying their cries. Will they also lead to a change in policy from pharmacologic Al?"
Long-time consumer activist Ralph Nader has also joined in the chorus of criticism directed at Gore. Writing in Public Citizen's Health Letter, Nader states that Vice President Al Gore "has engaged in an astonishing array of bullying tactics" to prevent South Africa from implementing compulsory licensing and parallel import programs for HIV/AIDS drugs. He notes that a recent State Department report to Congress recounts that "Gore has led 'an assiduous, concerted campaign' by 'all relevant agencies of the U.S. government' ... to coerce South Africa into abandoning measures to make pharmaceuticals more affordable." He charges that "Gore oppose[s] sensible South African policies" because "the Pharmaceutical Research and Manufacturers Association wants him to. The industry does not care too much about drug prices in Africa ... but the drug companies do fear that steps to lower prices in South Africa will generate pressure to lower prices in the United States and Europe." Noting that both practices are legal under World Trade Organization rules, Nader contends that the "Gore position is worse than hypocritical. ... This is an emergency, and millions of lives are at stake." He concludes, "How should Al Gore be assessed if he cannot take time out from frantic political fundraising and today recognize the immorality of his government's policy toward the South African people on this issue?" (Associated Press, Kaiser Daily HIV/AIDS Report, Public Citizen Health Letter, Philadelphia Inquirer)
AIDS care lags for minorities, poor
Revolutionary AIDS drugs that have prolonged life for thousands of people are less likely to reach an entire class of those infected -- those who contracted the virus through drug use, the first national study of AIDS treatment found.
Blacks, Latinos, people with Medicaid and those without health insurance were all less likely to get the new drugs and other important health care -- particularly in early 1996, when the study began.
Two years later, the gap had narrowed for some groups -- notably Latinos and blacks. But it persisted for many others, including women, who are most likely to get HIV through sex with a drug user and were also less likely to be in treatment.
"It's very clear there is a great divide in HIV care between the haves and the have-nots," said Dr. Martin F. Shapiro of the University of California Los Angeles, lead author of the study being published in the Journal of the American Medical Association.
Disparities in access to health care exist throughout the health system, not just in AIDS treatment. But unlike other diseases, most people with the AIDS virus can trace their infection to one of two sources: homosexual men or intravenous drug users.
Part of the explanation is simple economics. People infected through intravenous drug use, or sex with a drug user, generally have less money, less education and more life problems -- all of which keep them from getting effective care. Someone who can't pay the rent or buy groceries or who is addicted to drugs may find getting medical care a low priority.
"That tends to be much more of a down-and-out population in every way," said Dr. Alvin F. Poussaint, who studies racial disparities in health at Harvard Medical School.
At the same time, the gay community has mobilized around the disease, educating its members about treatment options and the importance of getting care.
But while the AIDS epidemic hit homosexual men first, blacks are the fasting growing group of victims, now accounting for nearly half of all new infections, making the disparities in care even more alarming to public health officials.
There are many AIDS clinics in the gay community but few that are targeted to drug users, said Peter Lurie of Public Citizen's Health Research Group.
"The injection drug users are a relatively forgotten part of this epidemic," he said.
The new research comes from the HIV Cost and Utilization Study, the first national data on care for people with HIV and AIDS. Researchers identified about 231,400 American adults with HIV who were receiving at least some medical care outside the military or prison, in all states except Alaska and Hawaii. From this group, a random sample of more than 2,000 patients was chosen for interviews beginning in early 1996 and again in early 1998. Researchers measured six components of care -- three relating to use of medication and three related to use of doctors and hospitals.
Overall, care improved from 1996 to 1998. At first, just 29 percent of all patients were receiving care that met all six standards. That jumped to 47 percent two years later. But the care differed widely among groups.
For instance, in 1998, 88 percent of whites were receiving powerful protease inhibitors, but just 80 percent of blacks were.
Similarly, 87 percent of men infected through sex with other men were taking these drugs in 1998, compared with 81 percent of those infected through drug use.
Some of the gap had narrowed, but researchers found that trend had slowed, meaning further improvements were not likely.
Future research will focus on the cause of the disparities: Are certain patients failing to seek care? Or are the attitudes and practices of doctors and hospitals making it harder for these patients to get it?
"At least on an unconscious level, some providers may have more aggressively tried to provide these treatments to certain patients," Shapiro said.
He also noted that the differences in care based on insurance type and race persisted, even when researchers took into account other factors, including how the person contracted the virus.
This, he and others explain, reflects larger disparities in the health system that go well beyond AIDS. "The voices of the poor are not heard well in this country," Shapiro said. "In the case of HIV, the consequences of that can be quite profound." (Associated Press)