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In This Issue:
HIV reporting has no impact on treatment access
Liver disease on rise among PWAs
Congress works on disabled health insurance bill
MA extends Medicaid to people with HIV
NYC must provide "immediate" shelter to homeless PWAs
Court says Giuliani is guilty of punishing Housing Works
Activists occupy US trade office
Bradley Medicaid proposal under attack
Contrary to the arguments of many researchers and policy makers, a study released on November 15th shows that reporting HIV-infected persons to public health authorities does not seem to affect how quickly the patients seek medical care, or how many partners they notify of their HIV status.
The study -- funded by the Centers for Disease Control and Prevention and published in the current issue of the Annals of Internal Medicine -- is likely to stir up the highly controversial issue of whether names of HIV-positive people should be released to public health departments in order to facilitate surveillance of the disease.
Currently all 50 states mandate that people with AIDS be reported by name to local public health departments. However, only 31 states have adopted a similar policy for reporting people who are HIV-positive and haven't developed AIDS. HIV is the virus that causes AIDS. In states such as California that don't have the policy, the issue is under consideration -- and not without intense debate.
Many argue that reporting HIV-infected people by name not only supports surveillance of the disease, but also allows efficient follow-up of infected individuals -- a potential opportunity for public health officials to help people notify sex and needle-sharing partners, and to help get people into care faster, the argument goes. But opponents contend that name reporting deters high-risk people from being tested or from seeking further care -- so as to "hide" from the system.
What the new study shows is that many of the arguments both in favor and against name reporting have been exaggerated, says Dennis Osmond, Ph.D., lead author of the study.
"The bottom line is that within the realm of public issues about partner notification and getting people into care earlier, name reporting did not help public health departments," says Osmond, a researcher in the department of epidemiology and biostatistics at the University of California, San Francisco (UCSF).
The team of researchers, from the CDC, UCSF and the University of California, Berkeley, analyzed data from surveys done in 1995 and 1996 in nine states with different laws for name reporting.
The surveys revealed that the percentage of people seeking medical care within two months of learning their HIV status was similar in states with and without name reporting (66 percent vs. 67 percent respectively). People contacted by health departments were no likelier to get medical care within the first three to six months of a positive HIV test, according to study results.
Name reporting also did not deter many people from seeking care once they knew their HIV status. Most respondents said their major reason for not seeking care was that they felt healthy or did not want to think about HIV. None of the respondents said fear of being reported to the health department was the major reason for avoiding care -- and less than 9 percent of people surveyed mentioned it as a reason at all.
The researchers also analyzed partner notification in states with name reporting. They compared people who had taken an anonymous test with those who had taken a confidential one (so that their name was unknown). The average number of partners personally notified by those who had taken an anonymous test was the same (about 3.8 partners) as that for people who had taken a confidential test and had been assisted with notification by the health department.
Those results are distressing because one of the purposes of name reporting is to help notify partners who might be infected, says Jeffrey Levi, Ph.D., of George Washington University's School of Public Health in Washington, D.C.
"This should be read as something of a wake-up call to health departments," Levi says.
But the concern remains that the policy of reporting names may deter some from getting tested in the first place, Osmond says. The study also found that, in states with the policy, more gay men delayed testing for fear of having their names revealed.
And that is one reason why many AIDS advocacy groups are fighting the establishment of the measure in states that don't currently require HIV name reporting.
"People have not understood how different HIV is, how great the stigma is, how scared people are," says Fred Dillon, state policy director of the San Francisco AIDS Foundation.
But author Stan Lehman, M.P.H., from the CDC, says surveillance is based not on monitoring people, but on reporting a test result. A name is used because that's the way things have traditionally been done in public health for all diseases, he added.
"To do old-fashioned public health you got to have information on a person," Lehman says. "But HIV has always been a much more political than normal disease." (WebMD)
Liver disease on rise among PWAs
Liver disease has become the leading cause of death among HIV patients at a Massachusetts hospital, a report issued as a Philadelphia medical meeting says.
"Many patients who are infected with HIV, especially those who contract the disease through intravenous drug use, are also infected with hepatitis-C virus," said Dr. Barbara McGovern, a professor at Tufts University School of Medicine and a member of staff at Lemuel Shattuck Hospital in Jamaica Plains, Mass.
The findings were reported at the annual meeting of the Infectious Diseases Society of America in Philadelphia.
McGovern said HIV patients who take a powerful combination of AIDS drugs called highly active antiretroviral therapy (HAART) were at particular risk because of the drug's potential toxicity to the liver.
One-third of people with HIV with underlying liver disease at Lemuel Shattuck have had to stop taking HAART.
McGovern and her colleagues conducted a retrospective chart review of all HIV-positive patients who died at their hospital from May 1998 to April 1999, and compared the results with a group of patients who died in 1991 before HAART was available.
The researchers found 22 deaths in the 1998-99 period, half of them due directly to end-stage liver disease while two others suffered liver disease as a significant secondary cause of death.
By contrast, only four -- or 15 percent -- of the 27 HIV patients who died at the hospital in 1991 group succumbed to end-stage liver disease.
"HIV-infected patients who also have hepatitis-C are at increased risk for accelerated progression from chronic, active hepatitis to cirrhosis," McGovern said. "End-stage liver disease is now the leading cause of death among HIV-positive patients at our institution."
Researchers recommend that patients infected by the HIV and hepatitis-C viruses receive careful evaluation before starting HAART treatment.
Hepatitis-C is a form of hepatitis that causes inflammation of the liver. (Reuters)
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Congress works on disabled health insurance bill
Negotiators on popular legislation that would let disabled individuals retain their government-sponsored health insurance if they leave cash disability rolls for work scrambled to settle their differences so that the bill can be finished before Congress leaves for the year.
On the budget side, Congressional leaders think they may have come to an agreement with Clinton Administration officials on the federal budget for FY 2000, which avoids major cuts in AIDS programs but fails to adopt many of the increases originally proposed by the President.
The "Work Incentives Improvement Act," is one of Clinton's top legislative priorities for the year, and passed the House by a vote of 412-9 last month and the Senate by 99-0 in June. But House and Senate negotiators on the measure have so far proved unable to reach agreement either on the specifics of the bill or how to pay for it.
The last remaining issues to be ironed out concern a Medicaid demonstration program and the period during which those with disabilities can retain their Medicare coverage once they return to work. The latest draft of the bill reduces the extended Medicare coverage from 10 years in the House-passed bill to 8.5 years, which has angered House sponsors and disability groups.
Backers of the measure are also unhappy with the funding level for the Medicaid demonstration program, which is intended to allow coverage for those who are not yet technically disabled, but who are likely to be disabled in the near future, such as those with HIV. The Senate-passed bill included $300 million for the program; but the most negotiators have been able to find is $150 million.
One issue that is apparently close to settlement is how to pay for the measure. Last week, several disability groups wrote to President Clinton urging him to veto their own bill if it included "offsets" that they said would hurt the poor, particularly one that would alter the rules for federal housing programs.
But over the weekend, the Clinton administration proposed its own funding provisions, including some small changes to the school lunch program and the Earned Income Tax Credit, which appear to have bridged the differences. Rep. Rick Lazio (R-New York), the House sponsor of the bill, said, "I think there's general agreement they'll be acceptable."
If negotiators can reach agreement on the rest of the measure, it is likely to be included in the massive year-end budget bill that Congress was expected to approve as fastfax was going to press. (Reuters)
MA extends Medicaid to people with HIV
The Massachusetts Legislature set a national precedent when it recently approved the state's budget with a $10 million provision to extend Medicaid coverage to low-income, HIV-positive residents, according to the Boston Globe.
Under the measure, 2,000 HIV-positive state residents who have not yet developed full-blown AIDS will qualify for comprehensive health care benefits. Currently, states require that those with HIV must progress to full-blown AIDS before qualifying for Medicaid, despite research indicating early HIV treatment saves medical costs. Larry Kessler, executive director of the AIDS Action Committee of Massachusetts, said, "This is a win-win for everybody. Poor people with HIV can now get the treatment they need before becoming seriously ill, and the Commonwealth will save millions in unnecessary treatment costs."
If Gov. Paul Cellucci (R) signs the proposed expansion, HIV- positive individuals with incomes at or below 200% of the federal poverty level will immediately qualify for primary care, diagnostic services, prescription drug coverage, substance abuse treatment programs and mental health care through Medicaid.
Funding for the expansion will come from the state's tobacco settlement.
NYC must provide "immediate" shelter to homeless PWAs
A State Supreme Court justice has ordered New York City to provide emergency housing to homeless people with AIDS on the day they request it, saying that anything less endangers their already fragile health.
Justice Emily Jane Goodman ruled November 15th that a 1997 city law calling for "medically appropriate housing" required the city's Division of AIDS Services and Income Support to provide immediate shelter to its clients.
Armen H. Merjian, a lawyer for Housing Works, the homeless advocacy group that filed the suit last year on behalf of two people with HIV, estimated that hundreds of people in the last two years have had to stay on the streets or with friends when the city did not have room for them.
Approximately 2,000 people with AIDS now live in emergency housing provided by the city agency, he said.
In her ruling, Justice Goodman said that "a night on the streets for persons living with our modern plague of AIDS is medically inappropriate," and added that the agency's own policies mandated that shelter be provided the day it was requested.
But lawyers for the city disputed Justice Goodman's interpretation of the law, saying it did not specify a deadline for when shelter must be provided. The law is "absolutely silent" on the question, said Thomas Crane, chief of the city's general litigation division, who said the city planned to appeal.
And the agency's policies, city lawyers said, required only that clients be given housing within 24 hours of a request, even if that meant they had to spend the night on the streets. If some clients have to wait longer than 24 hours, "it's not in any way a widespread problem," Crane said.
Patrick Markee, senior policy analyst for the Coalition for the Homeless, a nonprofit advocacy group, called Justice Goodman's ruling crucial for homeless people with AIDS.
"Obviously a lot have compromised immune systems, so if they're exposed to the streets or the shelter system, they face incredible risks," he said. "This is an enormously important victory."
In the suit, one of the plaintiffs, Derrick Hanna, 39, said that on four occasions, agency workers told him to make his own housing arrangements for the night.
"Being homeless is a horrible thing," he said in his affidavit. "I do not sleep out of fear all night long. When day finally comes, I try to catch some sleep on park benches or in front of churches. As a result, I often get little or no sleep. This takes a heavy physical toll on me, which I cannot afford because of my health status."
The second plaintiff, John Simmons, 37, said that he had tried to get emergency housing from the agency with his wife, Sunshine, but was turned away "numerous times" between December 1997 and May 1998, when his wife died.
"We often became so frustrated that we slept on the streets for days rather than shuffle our belongings back and forth only to be once again denied housing," he said in his affidavit.
"Although I am extremely ill, I am forced to sleep on the street in front of buildings. "I have chronic diarrhea," he added, "yet I have no bathroom facilities of any kind."
As temperatures dropped one day this month, a worker at the Division of AIDS Services' headquarters on West 13th Street, at Fifth Avenue, said he expected every client to receive emergency shelter.
"No one leaves here without housing," said the worker, who declined to give his name.
But later, two other workers said clients often do not receive the emergency housing they need.
Most homeless people with AIDS are given housing in single-room-occupancy hotels. In September, Housing Works sued the city over what it said were medically inappropriate accommodations in such hotels.
Kent Jackson, 34, who was visiting the 13th Street office yesterday evening, said the agency had given him a room in a single room occupancy hotel in the Bronx. "I was fighting a rat for my pillow last night," he said. (New York Times)
Court says Giuliani is guilty of punishing Housing Works
City officials tried to make an AIDS service group ineligible for millions of dollars in federal money because it had been critical of Mayor Rudolph Giuliani, a judge has ruled.
In a ruling released November 12th, U.S. District Judge Allen Schwartz found that city officials acted with "retaliatory intent" against Housing Works, a nonprofit group that operates two homes for homeless people with AIDS, mental illness and drug addiction.
Housing Works has been a relentless critic of Giuliani's policies on AIDS. It has blocked rush-hour traffic on bridges and tunnels, interrupted news conferences of city officials and conducted sit-ins in city offices.
Housing Works claimed the administration had initially given it a favorable rating, making it likely to qualify for grants from the U.S. Department of Housing and Urban Development. The agency awards grants through a ranking system established by the city.
Housing Works said top city officials, angered by the group's stance against the mayor, downgraded it, effectively blocking $2.4 million to cover three years of operating expenses.
Schwartz issued an injunction ordering the city to restore the original rating. Schwartz also barred the city from punishing the group for its "criticism of the Giuliani administration or its advocacy on behalf of persons with HIV or AIDS."
The decision came less than two weeks after a federal judge found Giuliani had violated the First Amendment by withholding payments to the Brooklyn Museum of Art over an exhibit the mayor deemed offensive.
Trade Representative Charlene Barshefsky received a surprise this morning when AIDS activists from ACT UP and other groups stormed and occupied her office this week, chaining themselves to her balcony with a large banner demanding "Essential Medication for all Nations."
The demonstrators threw dollar bills featuring Barshefsky's image, and empty pill bottles symbolizing the effect of what they call the US bullying of nations hard-hit by HIV/AIDS.
Ambassador Barshefsky, a Clinton cabinet appointee and chief trade negotiator for the US Government, will represent the US at the upcoming World Trade Organization Ministerial in Seattle.
Sources state that US trade officials plan to lead the opposition against proposals from developing countries to increase access to "essential medicines" during TRIPs agreement talks in Seattle, according to a leaked report from negotiations with the WTO Director General in Geneva. TRIPs is the WTO agreement on intellectual property, including pharmaceuticals.
"Ambassador Barshefsky uses threats of trade sanctions to force poor nations to abandon public health interventions that save millions of lives," stated ACT UP's Paul Davis. "Now she and Clinton intend to use the WTO negotiations in Seattle to win an even bigger sledgehammer to crush the reasonable practices of nations seeking to save lives by providing life-saving medicines."
The WTO Ministerial issues a declaration which forms the basis for upcoming years of WTO negotiations. A number of countries led by Venezuela and Kenya are submitting revisions to the Ministerial Declaration. These countries seek to exempt the World Health Organizations list of essential medicines from the patent system for "developing [and] least developed trading partners."
Activists demanding an end to US policy impeding access to life-saving medicines have been targeting Barshefsky and Vice President Gore. The office takeover comes on the heels of a 750 person demonstration at the US trade representative's on October 6. Activists targeted candidate Gore for his role as chair of the US/South Africa Bi-National Commission until he agreed to remove US obstructions to South Africa's Medicines Act. The 1997 Medicines Act permits local manufacture of generic versions of patented medicines.
Barshefsky routinely levies sanctions and other punishments against poor countries' efforts to provide access to "essential medication" even though they do so within the legal framework of TRIPs, according to activists. The office of the USTR, often at the request of pharmaceutical interests filing complaints, has 46 current actions against poor countries for using internationally accepted and WTO compliant measures such as compulsory licensing and parallel importing to save lives, they said.
Compulsory licensing is when a country issues a permit for manufacturing a generic version of a patented product, paying a royalty to the patent-holder. Parallel importing is the process of shopping around the globe for the best price for a patented product. The United States routinely issues compulsory licenses, and most Western European nations frequently use parallel importing for medicines
Activists vow to return to Washington November 30 for a large protest at the White House on the eve of World AIDS Day. Dozens of arrests are expected. "This is what the US has to offer to 90% of the people with HIV globally this World AIDS Day - shameful policies from a trade superpower that guarantee the deaths of millions worldwide," said ACT UP member John H. Bell.
"This office takeover is a calling card. We are giving Barshefsky a send off to the humiliation shes going to face in Seattle in a few weeks," said Susan Whitaker of ACT UP Philadelphia. "She values pharmaceutical company profits more than millions of human lives. We demand that she support the proposals of countries like Venezuela and Kenya, rather than oppose them."
Bradley Medicaid proposal under attack
A proposal by Democratic presidential candidate Bill Bradley to eliminate the Medicaid program and replace it with publicly subsidized vouchers of $1,800 to buy private health insurance has led to a firestorm of protest from AIDS advocates and Vice President Al Gore.
Gore won friends among many AIDS advocates several years ago by calling for an extension of Medicaid benefits to cover all people with HIV, regardless of whether they had progressed to an AIDS diagnosis. That proposal was eventually rejected by Congress.
Calling Medicaid "one of the most successful programs ever passed by the Democratic Party," New York Sen. Tom Duane (D), who is HIV-positive, said, "Dismantling Medicaid is not only a big idea, it is a bad idea." New York Councilwoman Christine Quinn added that there are "thousands of people living with AIDS in New York who need Medicaid for their health care. ... It is simply outrageous to eliminate it."
Bradley spokesperson Kristen Ludecke, however, claimed that under Bradley's proposal, "people with AIDS would be put into a separate risk pool. A benefits package would be designed to meet their needs. So there is absolutely no cause to suggest their benefits would be reduced."
Defending his proposal, Bradley said, "[Gore's] wrong. He's defending something that needs to be improved."
The Gore camp is stepping up its efforts to discredit Bradley's plan. Ticking down a list of those that would be adversely effected by it -- "minorities, the poor, the disabled, senior citizens and those who are HIV- positive" - Lehane said, "Each one of those groups would be disproportionately impacted and left out in the cold if Senator Bradley's health care plan was ever enacted."
"Here is the problem with eliminating Medicaid - 40 million Americans depend on Medicaid,'' Gore told several hundred people at a community center.
Gore's campaign has said $1,800 isn't enough to buy coverage and would imperil health care for millions.
"What he has put forward is an unrealistic $1 trillion plan that would not save one penny for Medicare at a time when Medicare needs to be fixed. And he would actually dismantle Medicaid,'' Gore said.
Gore, in shirtsleeves in the heat and his collar soaked with sweat, told a New York audience that about one-third of all black children and nearly one-fifth of Hispanic children depend on Medicaid. Those minorities are far more heavily represented than whites because they have lower average incomes, Gore said.
"It means it (Bradley's plan) has a disproportionate impact on African-Americans and Latinos,'' he said.
Gore also charged Bradley's plan would harm people with AIDS and the disabled. Half of people with AIDS and 7 million disabled Americans receive Medicaid assistance, he said.
"I would call on Senator Bradley to reconsider a program that has such a harsh impact on low-income and low-middle-income working families."
Bradley fired back with a statement accusing Gore of trying to use "scare tactics and divisiveness."
"This inaccurate attack is precisely the kind of thing that makes it impossible to get anything done in Washington," Bradley said.
"I want to replace Medicaid with something better," he said in a statement issued by his campaign. "Providing all children with affordable health care is the only goal, and unfortunately Medicaid cannot meet that goal."
Sen. Paul Wellstone, D-Minn., who has been stumping for Bradley in Southern California, held a news conference nearby to respond to Gore's critique.
Bradley's plan contains strong patient protection provisions, Wellstone said in a telephone interview.
"He's just simply wrong," Wellstone said of Gore's attack. "I don't think there's any question but that Bill Bradley would make sure Medicaid recipients receive comparable coverage."
Bradley's aim in eliminating Medicaid was to remove the stigma of receiving public benefits, Wellstone said
"Medicaid stigmatizes and says, if you're poor, you just got that. You can't join this other system. You've got to have this separate thing," Bradley said in a separate interview. Medicaid covers a small fraction of the poor and patients often don't have primary care physicians, but are forced to rely on hospital emergency rooms, he noted.
Bradley suggested that his rival's critique hurt most because it denigrated Bradley's "deep and long-standing commitment" to helping minorities and the poor.
"It's sad that (Gore) would not respect that," Bradley said. (Associated Press, Kaiser Daily HIV/AIDS Report)
Metropolitan Community Church of Philadelphia has announced the founding of "The Metropolitan Community Church of Philadelphia Living Award." The award is designed to honor and recognize individuals and /or organizations that have taught us how to live with HIV and AIDS. The awards will be presented on December 5, 1999 at 7 PM in conjunction with a service entitled "I'm Still Living..."
The church is currently accepting nominations for this award.
Individuals or organizations can make nominations by sending the name and address of the nominee, alone with a description as to why this person or group should be honored to, Metropolitan Community Church of Philadelphia, P. O. Box 8174, Philadelphia, PA 19103. One does not need to be a member of the church or HIV positive to submit a nomination or to be an award recipient. This year ten awards will be presented at the service. All nominations must be received by November 22, 1999 in order to be considered. A panel of three persons from the sponsoring organizations will review all nominations and select the winners.
Winners will be announced several days prior to the awards service.
The service is being made possible by a donation from ProCare Pharmacy.