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Issue #198: October 9, 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 and type the message SUBSCRIBE in the message section. Sources for some articles in this issue include Kaiser Daily Health Reports, Philadelphia Inquirer, Reuters, San Francisco Chronicle.AIDS Police calling...NJ bill would collect partner names by phone
PA outcry against names reporting grows
While deaths decline, infection rates grow
HOPWA survives Congressional gridlock; CARE debate continues
HAART studies lacking participants
Vitamins may help with side effects, viral load
TPAC seeks PWAs for priority process
AIDS police calling...NJ bill would collect partner names by phone
The New Jersey Assembly Health Committee has unanimously passed a bill that would require state Department of Health and Senior Services officials to contact individuals who test positive for HIV and ask them "to voluntarily divulge the names of people" they might have infected. The bill now goes to the full Assembly for a vote.
State Assemblywoman Charlotte Vandervalk (R), the bill's sponsor and chair of the Health Committee, said she wants a system in which the state health department would telephone each person whose name is reported to the state HIV and AIDS registry and ask them for the names of their sexual or drug use partners.
Since 1991, the state has required public clinics and private doctors to report the names of all people who test positive for HIV.
Sixteen of the 24 state-funded clinics allow patients to be tested anonymously, even though New Jersey has the HIV name reporting requirement.
The health department has not mapped out any procedures for complying with such a law, were it to be enacted, a spokesman said.
"The department will contact the infected individual and announce that they have this service," Vandervalk said after the committee hearing.
When it was suggested that a phone call from the state health department to someone's home could cause problems for people who haven't figured out how to tell their loved ones, Vandervalk said the state would be "very sensitized to what could go wrong. It's handled in a very professional way."
New Jersey already has a voluntary program to help newly diagnosed HIV-positive people to alert sex and needle-sharing partners. Under that program, the counselor who gives the test result mentions the state program. The newly diagnosed person can give one or more names, and the state will contact them without saying who forwarded their names.
Passage of the controversial bill caught many New Jersey HIV/AIDS activists off guard.
Assembly member Barbara Wright said the bill simply codifies the existing voluntary program. But if Vandervalk's understanding is correct -- that the state would contact individuals after their names are reported to the health department -- it would mark a huge change in procedures, some say.
"It would totally turn the reporting system on its head," said Riki Jacobs, executive director of the Hyacinth AIDS Foundation in New Brunswick. "Now you're talking about releasing names to selected health department officials. So all of a sudden you might get a call from someone from the state. It could be very unsettling to people who didn't volunteer names at the time they got the result."
Jacobs said the existing voluntary program is sound, and said the bill should be amended so counselors or private doctors who give the test result would be the only ones who ask for names. The thought that the health department will call you at home might be enough to discourage some people from getting checked in the first place, Jacobs said.
"I certainly think that would stop people from getting tested," Jacobs said.
Everyone whose name is already on the state AIDS registry has a right to be concerned about the bill as well, Jacobs said, because it allows the state to contact anyone on the list, regardless of when they were tested or when their name was reported.
"It would scare people to think their name would be released when they had been told it would be filed in a registry and not subject to staff perusal."
Jacobs said she did not appear at the committee hearing because she was under the impression the bill did nothing more than require the state health department to continue the current voluntary disclosure program.
"There are a variety of reasons why this may not be a completely well-baked idea," said Catherine Hanssens, director of the AIDS project at Lambda Legal Defense and Education Fund.
She said it would be a "very bad idea" for the state health department to make unexpected calls to the homes of those who have tested positive, noting that she had not read the bill and based her comments on a reporter's questions.
"If the problem is the state believes people aren't getting adequate counseling at the point of testing, then it would make sense for the health department to focus some resources there. I think it's appropriate to make it a requirement that people get information on all of their options before and after they get tested."
She agreed with Jacobs that the nurse, counselor or doctor who gives the test result is the person who ought to mention the program and ask for names.
PA outcry against names reporting grows
Over 75 people with HIV/AIDS and others representing Philadelphia HIV advocacy organizations, service organizations, and treatment facilities held a press conference this week to condemn the expected Pennsylvania Health Dept. plan to require that the names of people with HIV infection be reported to the state. The event was coordinated by ACT UP Philadelphia.
The activists spoke out against a proposal announced last month by state Health Secretary Dan Hoffman that would create a statewide registry of all HIV positive people in Pennsylvania, which they say would potentially violate the rights and confidentiality of those infected.
Since Hoffman's proposal was widely reported by the Associated Press, state health officials have backed off from firmly holding to Hoffman's statement, now saying that "the department is looking at all options" and no final decision has been made.
Philadelphia's AIDS Activities Coordinating Office joined people with HIV and the AIDS service community in opposing names reporting in September, after a series of public hearings at which all participants supported HIV reporting but all opposed using a names-based system. AACO has proposed to the state that it use a reporting system which uses codes to identify individuals reported.
The Philadelphia HIV Commission, which oversees about $14 million in federal funds for the region, is expected to formally oppose a names-reporting requirement at its October 21st meeting.
Activists have sought to remind Governor Tom Ridge, who is seeking re-election on November 3rd, that he promised in his first campaign in 1994 not to implement a names-based reporting policy. Ridge has been silent on the issue this year, and most activists believe that Hoffman is waiting until after the election to announce a names-based system. While code-based reporting, which protects the identity of the individual being reported, has received the support of many states, health professional organizations, and virtually all AIDS service organizations in Pennsylvania, the U.S. Centers for Disease Control and Prevention (CDC) has discouraged states from adopting code-based systems.
"We want the state to know that local AIDS agencies are unanimous in their opposition to mandatory names reporting," said Paul Davis of ACT UP. "The organizations that are supposed to benefit from names reporting are unanimously opposed to it."
Larry Hochendoner, director of the Philadelphia AIDS Consortium (TPAC) added, "Names reporting enables the system to violate the rights of people living with HIV. Without protection of their confidentiality people living with HIV continue to fear reprisals from the community at large based on their HIV status." TPAC is the formal coalition mandated by Hoffman's department to manage close to $5 million in state and federal AIDS funds in southeastern Pennsylvania.
Other speakers at the press conference included representatives from We the People, the only PWA coalition in Pennsylvania, ACT UP Philadelphia, the ACLU, Philadelphia Community Health Alternatives (PCHA), the Lehigh Valley HIV Support Group, and TPAC.
These supporters are not alone, according to ACT UP. Massachusetts and Maryland have already adopted a code-based, or "unique identifier," system, and Illinois will implement its unique identifier system in July, 1999.
Some public health officials argue that mandatory name reporting is the most reliable way to get newly diagnosed people into health care. However, activists note that no HIV reporting system that has been proposed, whether name or code-based, has been linked to increased funding to assure that those reported are directly linked to primary care. Instead, they say that what is needed is more funds for drugs and treatment.
"Those who profess the advantages of names reporting are lying to us," said Rob Capone, interim director of We The People. "They tell us that in order to protect the public health they need our names. They say that we can take the same sober, pragmatic approach to treating HIV as they claim they do with other diseases, without harming anybody's privacy or inviting discrimination.
"Yet these are the same people who want to start an HIV gestapo to interrogate us," Capone continued. "They ignore the fact that people tend to lie when they are being interrogated about their sexual activities.
"Even people as powerful as the President of the United States lie about their sexual activity," Capone noted.
"These are the same people who are trying to criminalize us," he said. "These are the same people who have allowed immoral and unethical experiments to be performed on poor people, prisoners, and the mentally ill, all in the name of advancing public health. We don't trust them.
"The reality is that if you want the truth about who someone may have infected you have a better chance of getting it from someone who isn't forced to give you their own name. The reality is that if you want to protect the public health you need to set up a partner notification system that is completely anonymous, so that the information can not be traced back to the person reporting it, so that trust is not even an issue. If you want to protect the public health you develop a system that would assure people living with HIV that they are guaranteed adequate health care from the minute they are diagnosed."
Asia Russell of ACT UP added, "Giving a list of names of people with HIV to Dan Hoffman isn't the same as funding more slots for medical assistance." In fact, studies show that mandatory HIV names reporting is likely to reduce the number of people who seek testing because of the fear that their names will be added to an "AIDS list" that could be abused or released publicly.
Jose DeMarco, a member of ACT UP, said that "forced names reporting for HIV means that many people will avoid testing altogether because they don't want to risk their safety, the safety of loved ones, or their jobs -- not to mention their privacy. HIV is still a heavily stigmatized illness."
Michael Hinson, director of The Colours Organization, said that the state is setting itself up for problems if it moves rapidly to names reporting. "The community isn't ready for it, and until it's ready for it, it won't work," he said.
While deaths decline, infection rates grow
To great media fanfare, the National Center for Health Statistics has announced the rate of deaths related to AIDS dropped by an extraordinary 46.4% in 1997, the largest annual decrease in the history of the U.S. epidemic.
According to the agency, there were 16,865 deaths due to AIDS in 1997, as compared to 31,130 deaths in 1996. The mortality rate decreased by a much greater margin than the previous record decrease, which measured 29 percent from 1995 to 1996. The death rate fell to the lowest level since 1987 -- the first year AIDS deaths were tracked.
The agency noted AIDS ranked as the eighth leading cause of death in the United States in 1996, but fell to the 14th leading cause in 1997.
However, the number of new HIV infections remained stable at about 40,000, the agency said, indicating that there is a larger population of people living with HIV. The longer lifespan of infected people also means that there is an increased risk of the spread of the virus, as well as an increased demand for expensive primary care services from experienced providers.
Philadelphia's drop in the AIDS death rate lagged behind the national average in 1997, at 21%. However, preliminary data for 1998 indicates that the death rate through June 30th has dropped by 46%, according to city epidemiologist Erica Gollub.
In Philadelphia, the decrease has been more marked for men and for whites than other groups. Gollub believes that this disparity "reflects uneven access to treatment advances among people of color and women. Gollub said that Philadelphia is also experiencing a dramatic upswing in AIDS incidence related to heterosexual transmission and injection drug use (IDU), starting between 1993-95 and continuing to climb through 1997. These new cases are concentrated among blacks and women, she said, but have also produced a surge in male cases due to heterosexual sex, and in infants whose maternal risk factors are injection drug use or the mother already being infected.
The city's AIDS Activities Coordinating Office has announced that it plans to expand care outreach and primary medical care services for these populations if it obtains additional funding from the federal government in 1999.
Some experts worry that the good news about the decrease in AIDS mortality will cause complacency.
Health and Human Services Secretary Donna E. Shalala said the decline "reflects the tremendous power of the new combination therapies, the enormous effort to get the drugs to people and the huge federal effort to pay for these drugs. What this also tells us is that we have serious problems when we have not brought down the rate of new infections."
Some researchers note that they are particularly concerned that while the decline in AIDS mortality shows great strides forward in treatment, prevention efforts have not been similarly successful because the number of new infections has remained level.
Daniel Zingale, director of the AIDS lobbying group AIDS Action, said that "The 47 percent drop in the AIDS death rate is one of the most extraordinary accomplishments in the fifteen-year fight against AIDS. Just a few years ago, those diagnosed with AIDS received a sentence to near certain death. Today, despair has been transformed into hope.
Zingale said that the statistics confirm that "our investment in AIDS care and research is paying off." However, he said, "our divestment from HIV prevention is creating a new epidemic for a new generation of Americans."
"Epidemiological and anecdotal evidence point to a disturbing increase in unsafe activity among at-risk populations, particularly young people," Zingale said. "Indeed, half of the 40,000 new HIV infections every year are among people under 25.
"Even worse, during the past several years, prevention funding has been flat and no ambitious prevention initiatives have been proposed by the Clinton Administration or Congress. In particular, we must provide young people and women with the unvarnished facts about how HIV is spread as well as the sober truth about the new AIDS treatments."
Zingale said that the sacrifice of prevention funding to expand treatment funding was inappropriate, and that the only way to truly combat the epidemic was to fully support both approaches.
"AIDS drugs cost 40 dollars a day," he said, "-- condoms cost 40 cents."
Zingale also noted that the positive news on declining mortality rates "contrasts with the fact that they're being denied to an entire class of Americans. It is a tragedy that current federal policy denies low-income HIV-positive Americans access to Medicaid and AIDS-preventing drugs until they develop AIDS. Medicaid must be modernized to ensure that all HIV-positive individuals get access to drug treatment and medical care before AIDS sets in, not after."
In Philadelphia, many PWAs face serious obstacles in obtaining AIDS medications even if they are on the Medicaid program, since many of the region's pharmacy chains in the region have pulled out of the Medicaid prescription programs because of low state reimbursement rates.
HOPWA survives congressional gridlock; CARE debate continues
While the 1999 federal budget continued to be struggle through a Congress experiencing impeachment gridlock, House and Senate conferees have preserved an $11 million increase in AIDS housing programs in the final version of the FY 1999 Veterans Administration-Housing and Urban Development appropriations bill, according to the AIDS lobbying group AIDS Action.
The House version of the bill included a provision to divert a $21 million increase in funds allotted to the Housing Opportunities for People with AIDS (HOPWA) program to veterans housing programs. The proposal had been made by Van Hilleary, a Republican legislator from Tennessee, who said that the HOPWA program was a ruse to give special privilege to gay people with AIDS.
AIDS Action reports that it anticipates approval of the conference report, granting HOPWA $215 million in FY 1999 to ensure that states and local communities meet the housing needs of people living with AIDS.
There are potentially 11 new communities that will become eligible for HOPWA funding in fiscal year 1999. The Clinton Administration had added the $21 million to assure that the new communities would receive funding without reducing allocations for other cities and regions. Without the allocation, those new communities would probably be unable to receive funding unless significant cuts were made in regions where funding is already distributed.
Over the past two years, the number of communities qualifying for HOPWA funding has increased by 20% while the amount of funding has only increased by 15%. Conversely, the Veterans program has seen a 70% increase in funding during this period.
Meanwhile, the Labor-HHS-Education Conference process continued to debate the fate of the Ryan White CARE Act as this issue of fastfax went to press.
Currently, the House appropriations bill provides Title I of the CARE Act with an increase of $35 million, which would bring FY 99 funding to a total of $500 million, and it provides a $15 million increase to Title III, bringing the Title III FY 99 Total to $91 million. However, the House bill may be vulnerable to negative amendments when it comes to the floor.
The Senate is expected to create an omnibus appropriations bill for FY 99 funding. Congressional sources say that the Senate draft presently agrees with the level of funding that the House recommended.
The Congressional Black Caucus has proposed a $130 million HHS funding initiative in conjunction with their request for an HIV/AIDS state of emergency in the African American community. It is believed that the $20 million component of the project impacting the CARE Act would provide additional targeted resources to Title I, Title III and the AIDS Education and Training Centers. Others are concerned, however, that the conference committee may seek to support the caucus initiative by diverting existing funds from the Title I program.
HAART studies lacking participants
While the National Institutes of Health and others plan studies to test the possibility of stopping combination therapy in people with HIV who have been able to drastically reduce their viral loads and maintain them under the level of detection, one practical problem has become paramount: finding participants.
Richard Chaisson, an AIDS researcher at Johns Hopkins University School of Medicine, raised the issue in an online presentation at the Interscience Conference on Antimicrobial Agents and Chemotherapy. He noted that Massachusetts researcher Bruce Walker, a leading proponent for treating HIV as soon after infection as possible, presented to the ICAAC audience information such about one patient who began treatment before developing HIV antibodies and then stopped therapy.
At first, Walker reported, the patient experienced a rebound in his viral load. The patient started taking drugs again and continued them for "a number of months," noted Chaisson's summary, and then stopped therapy again. The second time, Walker told the ICAAC gathering, the patient maintained an undetectable level of virus.
"The patient has now gone 19 months without treatment and has an undetectable viral load," noted Chaisson's summary.
Because doctors have found "replication-competent virus" still in the patient's CD4 cells, they conclude that the infection is "being controlled by immune responses despite a lack of eradication."
Chaisson reported that Walker stressed that while the experience with the one patient suggested the "very exciting possibility of short-term therapy leading to effective control without therapy," it could be considered only anecdotal. Other research sites trying to study this relatively new theory that therapy can be halted are, said Chaisson, finding it very difficult to find participants.
Even though an estimated 40,000 people are becoming infected with HIV every year in the U.S., noted Chaisson, "In the last year, six sites funded with more than $6 million of NIH grant support to study acute HIV infection have enrolled only a handful of patients."
Vitamins may help with side effects, viral load
A report in the Journal of Clinical Investigation last July suggests that people with HIV who take the nucleoside analog AZT and suffer from nearsightedness as a side effect can avert developing that side effect by taking high doses of vitamins C and E.
In the Sept. 10 issue of the medical journal AIDS, researchers at the University of Toronto have more good news about vitamin C and E supplements. They say vitamins C and E can "produce a trend towards a reduction in HIV viral load."
In the latest study of 40 patients, one group received 800 IUs of Vitamin E and 1000mg of Vitamin C per day; the other group received placebo. While all the patients were on combination therapies, the study was conducted before the widespread use of protease inhibitors and none of the 40 was on protease inhibitors.
According to the researchers, after three months, the group taking the vitamin supplements had a "more favorable" decrease in viral load than the group on placebo.
TPAC seeks PWAs for priority process
The Philadelphia AIDS Consortium (TPAC) is seeking the participation of people living with HIV/AIDS who live in Bucks, Chester, Delaware, Montgomery or Philadelphia counties in an ongoing process of setting priorities for how Title II CARE Act dollars are spent in southeastern Pennsylvania.
TPAC has announced that meetings are being held once a month in a different location throughout all five counties. At these meetings, TPAC says it will help people with HIV/AIDS learn about how HIV/AIDS services are delivered now; and provide an opportunity for participants to propose their own ideas about how the federal and state money should be spent.
The next meeting will be held in Philadelphia County on Thursday, October 15th, from 4-6 p.m. at the William Way Community Center 1315 Spruce Street, in Philadelphia.
For more information, call 215-985-6200.
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