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In This Issue:
Judge says no to foster care for family with HIV+ child
Another study shows HIV rebounds if treatment stops
Early access program for ABT-370 announced
High level of symptoms and distress seen in PWAs
Commission Consumer Caucus still to meet
MA minority AIDS coalition given $13m
US launches plan to fight race disparities
PWAs fill 60% of S. African hospital beds
NAACP launches national awareness campaign
A federal judge in central Pennsylvania has ruled that it is "objectively reasonable" to refuse to place a foster child in a family because another child in the family has AIDS.
The ruling is apparently the first time that HIV infection in another person has been ruled a "direct threat" within the meaning of the Americans with Disabilities Act (ADA) and the Rehabilitation Act, both of which protect disabled people from discrimination.
The case involved a couple in Centre County with long experience in foster care. The mother had previously been okayed for caring for eight foster children, and had formally adopted seven of them. Despite earlier indications that it would approve the family's latest request to care for a foster child, the Centre County Office of Children and Youth Services ultimately denied the request, citing the fact that one of the children currently living with the family was infected with HIV.
The family believes that the fact that they are an interracial couple and that the prospective foster child was white also factored in to the county's decision, although county officials denied that claim.
The couple currently cares for a 10 year old boy who has been HIV+ since birth, and has been diagnosed with AIDS. With therapy, his viral load has been reduced to undetectable levels, although he continues to suffer from chronic colitis and diarhhea.
"In the instant case, there is a high probability that this fatal disease will be transmitted to children placed in foster care" with the family, Judge James F. McClure wrote in ruling against a preliminary injunction sought by the couple.
But McClure's decision was immediately challenged by Scott Burris, a nationally-known AIDS legal expert who participated in the case on behalf of the American Civil Liberties Foundation of Pennsylvania.
"We're convinced that this is a policy from the eighties," Burris told the newsletter, AIDS Policy and Law. "There isn't any significant risk. We think it's just a figment of AIDS phobia, or maybe a fear of liability from AIDS phobia."
Burris criticized the judge's statement that the HIV+ child was at risk of sexual attack from other foster children placed in the same home. "We're getting to a level of unlikelihood that's hard to surpass," he said.
The court record indicates that when the county discovered that the family's adopted child had AIDS, it suspended the processing of their application under a new policy which forbade the placement of a foster child in a family where a child has a "serious infections disease," unless the biological parents of the foster child were informed and released the county from any liability.
The family asked that the new policy be declared unlawful under the ADA and the Rehabilitation Act, saying that their foster son's HIV status should be kept confidential and that the risk of infection was extremely unlikely. They also sued under the 1964 Civil Rights Act, claiming racial discrimination.
The judge also voided the race discrimination claim, saying he believed county officials who denied telling the family that they would never place a white child in an interracial home.
The judge said he was basing his decision that the HIV+ child's health problems posed a "direct threat" on data from the county indicating that almost half of the 125 children in the county's foster care system had emotional or behavioral problems, that one in four had been victims of sexual abuse, and that 1 in 20 had been perpetrators of sexual abuse. He said that the HIV+ child's own learning disabilities, brought on by an earlier seizure related to AIDS, made him a "likely target" for sexual abuse from other children.
Several AIDS legal organizations, including the Lambda Legal Defense Fund, are considering helping the family to appeal the denial of its request for a preliminary injunction in the case. It is unknown whether the judge will now allow the full case to proceed.
Levels of HIV quickly rise again once patients stop drug therapy, according to government researchers.
A team at the National Institute of Allergy and Infectious Diseases (NIAID), a division of the National Institutes of Health, studied two patients who had showed no viable HIV in their blood after treatment with potent drug combinations.
If any patients could maintain undetectable viral levels after stopping treatment, NIAID Director Dr. Anthony S. Fauci said,, "we'd expect it to be them." Instead, HIV in these two patients "bounced back as robustly" as it would in others, said Fauci. Both patients had measurable HIV in their blood within 3 weeks of stopping treatment, according to findings published in the October 28th issue of the journal Nature.
The two patients had been treated with powerful drug combinations for 30 and 33 months, and each had received periodic infusions of IL-2, an immune-system protein that bolsters the production and activity of the T cells that HIV targets.
"We were hoping that treatment with IL-2 would make it less likely that the virus would rebound," Fauci said. "That wasn't the case."
In fact, according to NIAID, these findings add to the evidence that currently available drugs cannot eradicate HIV from the body. The reason rests in the virus' ability to hide -- while drugs may kill HIV in active T cells, they cannot reach HIV hiding in inactive T cells. If drug therapy is stopped, the infection will resurge. Researchers believe latent HIV may also dwell in other "reservoirs," such as cells of the brain, gut, bone marrow, genital tract, and other organs.
Before stopping the patients' therapy, Fauci said, his team was unable to find even latent pools of HIV when they cultured inactive T cells from their blood and lymph nodes. The question was whether the virus would remain scarce.
It did not. Viral levels shot up from less than 50 copies per milliliter of blood -- or an undetectable level -- to 142 copies per milliliter within 6weeks for one patient, and 420 copies within 8 weeks for the other. Both were restarted on therapy and their viral levels dropped back.
Further studies are needed to pinpoint exactly where the virus hid out, the investigators report. These HIV reservoirs are a significant obstacle to controlling the virus, Fauci noted. "We need to enhance the immune-system response to eradicate the reservoirs," he said.
On September 27 Abbott laboratories announced an Early Access Program to make ABT-378/r (which is the new protease inhibitor ABT-378, which is combined with a small amount of ritonavir) available to a small number of patients outside of clinical trials, in the U.S. and some other countries. Because of limited drug supply at this time, the initial entry criteria are very restrictive in order to get the drug to the sickest patients; later, the eligibility requirements will be expanded as more drug is available -- probably by January 2000.
Right now, patients must have failed at least two protease-inhibitor-containing regimens, and either have a CD4 count under 50, or have had an opportunistic infection while on highly active antiretroviral therapy. Because ABT-378/r includes low-dose ritonavir (to maintain blood levels of ABT-378), it cannot be used together with drugs contraindicated for ritonavir; otherwise, most other medicines are OK -- including PMPA, T-20, and some other experimental antiretrovirals.
Because ABT-378/r is experimental, doctors will need approval from an IRB (institutional review board) -- which could involve delays due to the scheduling of meetings. Abbott has a central IRB which is already familiar with the drug and can approve applications quickly, but medical centers which have their own IRB often require their doctors to use it.
Patients, doctors, and other medical professionals can call 888-711-7193 (8:00 a.m. to 7:00 p.m. Eastern time) in the U.S. or Canada, or 00-800-49-68-59-90 outside North America, for more information about this program.
The AIDS Treatment News notes that patients considering this program may want to wait, if possible, for PMPA, T-20, or other experimental antiretrovirals, so that they can start the new drugs together. This is because those who qualify for ABT-378/r under the current criteria are probably already resistant to most or all approved antiretrovirals. Any antiretroviral, including ABT-378/r, should be started with at least one and probably two other antiretrovirals which are expected to be effective for the patient, to prevent development of resistance to the new drugs. Those who have no approved drugs likely to work for them may want to wait for at least one more experimental drug, to reduce the risk of losing ABT-378 as well. AIDS treatment activists in the Coalition for Salvage Therapy have been through long, hard, and apparently successful negotiations to make sure that the various rules allow the use of the different experimental drugs together.
But those who cannot wait should apply immediately, because there are only about 300 slots in the U.S., and similarly limited access elsewhere, until more drug becomes available, probably in January 2000. (AIDS Treatment News)
Ambulatory people with AIDS experience numerous physical and psychological symptoms. In fact, compared with cancer patients with a similar functional status, AIDS patients have significantly more symptoms and higher levels of symptom distress, Dr. Russell K. Portenoy, of Beth Israel Medical Center in New York, and colleagues report.
Dr. Portenoy's group evaluated the symptoms and distress levels associated with HIV infection in 504 outpatients between 1992 and 1995. More than half (56%) were men, 52% were intravenous drug users, 40% were African American and the mean age was 38.6 years. CD4 counts were below 500 cells per microliter in 93% of the patients, and 69% met the criteria for CDC clinical category C.
The most commonly reported symptoms were "worrying (86%), fatigue (85%), sadness (82%), and pain (76%)," the researchers write in the October issue of the Journal of Pain and Symptom Management. "Patients with Karnofsky performance scores <70 had more symptoms and higher symptom distress scores than patients with scores [of at least] 70."
Compared with subjects reporting homosexual or heterosexual contact as the HIV transmission factor, intravenous drug users "reported more symptoms and higher overall and physical symptom distress." The patients' gender and CD4 cell count did not appear to be associated with the number of symptoms or level of distress.
Dr. Portenoy's group also found that a higher number of symptoms and an increased level of symptom distress correlated with higher levels of psychological distress and lower quality of life.
Overall, these findings "emphasize the importance of assessing and treating symptom distress in improving AIDS patients' quality of life," Dr. Portenoy and colleagues write. The group points out that physicians may often "underestimate and undertreat symptom distress" in these patients. (Reuters)
Philadelphia health commissioner Estelle Richman announced on October 22nd that the "suspension" of the full Philadelphia HIV Commission "was not meant to imply" that the Commission's Consumer Caucus is also suspended.
The HIV Commission sets priorities for over $20 million in AIDS care and prevention funding for the Philadelphia region.
In a letter to Commission members, Richman said that the caucus is "an important voice that I wish to meet with personally and directly as we move through" the process of restructuring the region's community-based AIDS planning process.
"The goal of the restructure is to bring additional focus and clarity to the process of planning for HIV services," Richman said in her letter. "As with all HIV community activities which are recognized by the Health Department, the committee that I am establishing to advise me on the restructure will be consumer controlled." She confirmed that the restructuring advisory group will be "consumer controlled, reflective of the epidemic, and that most of the consumers [will] be conflict free," meaning that they are not employees of AIDS service organizations.
Richman's letter is believed to arise out of claims from some opponents of the restructuring that her intent was to eliminate the role of consumers in the AIDS planning process. During the period that the city is considering alternative models for AIDS community planning, the three decision-making committees of the Commission - the Care Committee, which monitors Ryan White CARE Act funding for nine counties in southeastern Pennsylvania and southern New Jersey, the Community Planning Group, which sets priorities for the city's AIDS prevention grant from the Centers for Disease Control, and the Housing Committee, which advises on HOPWA and other AIDS housing funds - will continue to meet as usual.
Richman assured the Commission members that the three planning committees will be "consumer and minority controlled as we move through the transition process."
A primary motivation behind the suspension of the large and often unwieldy full Commission, according to city officials, is the belief of both city and community representatives that the full Commission in recent years has merely "rubber-stamped" the decisions of the other committees. The all-volunteer group was also responsible for managing the Commission's $700,000 annual budget and small staff, but its efforts to do so were often thwarted by the inability of Commission leadership to get fiscal and management information or enforce its decisions over Commission staff.
In an earlier letter, Richman had identified "operational and functional issues" with the Commission "which must be corrected immediately" in order to protect the planning process. Among those issues is the expenditure of over $30,000 of Commission funds on expenses which had not been approved as required by the Commission co-chairs, including over $10,000 on lodging and travel expenses for the recently-resigned Commission manager, Bernard Warren. Neither city officials nor Commission overseers were advised of Warren's expenditures until after his resignation in early September.
A coalition of grass-roots organizations in Massachusetts has been awarded a total of $13 million in federal grants to fight the spread of AIDS in the black community.
The Black HIV/AIDS Coalition, a multidisciplinary group of 25 local programs in cities and towns across the state, announced their grants at a press conference in Boston.
The investment is believed to be the highest ever in a consortium of minority AIDS service providers. In Philadelphia, despite the heavy preponderance of people of color in the AIDS epidemic, only about 25% of AIDS funding goes to minority organizations.
The group received the awards after applying for the money through a nationwide program initiated by the Congressional Black Caucus to stem the rapid spread of the disease in the black community. About $156 million was earmarked for the program.
"Overall, the whole effort to coordinate a response from Massachusetts was very successful," said Gary Daffin, director of the Black HIV/AIDS Coalition, the group that initiated the collaborative effort. "We're very pleased."
The coalition, which had the highest-ranked proposal among those submitted, also received a $464,000 planning grant to develop a network to help fight HIV/AIDS, substance abuse, tuberculosis and sexually transmitted diseases in the black community over the next two years.
The proposals by the Black HIV/AIDS Coalition include a youth-led prevention program pairing schools and organizations, street-level outreach for prostitutes and a resource center for intravenous drug users, expanded medical treatment for women with children, and technical assistance for organizations working with gay men of color.
Although the spread of the disease is slowing in other communities, it is approaching epidemic levels in the black community. Though African-Americans make up about 20 percent of the population, they represent 34 percent of all AIDS cases today, compared with 23 percent in 1982, according to the Kaiser Family Foundation.
Neighborhood groups have been providing most of the treatment and prevention education in the black community, but most lacked the money to enhance their effectiveness. The coalition helped them combine some of their services and reach more people in the targeted areas: Roxbury, Mattapan, North Dorchester, Lower Roxbury, South End and part of Cambridge.
In addition to the neighborhood organizations, the state Department of Public Health received a grant to work with people with AIDS or HIV making the transition from jail or prison.
"There's a real effort to get agencies that are working in different disciplines to work together," Daffin said. "People may enter the system at one point but need the services of another program."
The Congressional Black Caucus is pushing for more money to be appropriated next year and groups not funded this year will reapply. (Boston Globe)
US launches plan to fight race disparities
To compensate for inequalities in healthcare among minorities, a government agency plans to set up as many as four centers over the next 5 years that will focus on eliminating such differences.
The new centers, established by the US Agency for Health Care Policy and Research (AHCPR) in Rockville, Maryland, will focus on recognizing ways to curb racial and ethnic disparities in infant death rates, cancer screening and management, heart disease, diabetes, HIV (the virus that causes AIDS), and immunizations for children and adults. Many diseases, including heart disease and certain types of cancer, disproportionately strike minorities. For example, the infant death rate is nearly 2.5 times greater for blacks than whites, and the prevalence of diabetes in Hispanics, Native Americans, and Alaska natives is about twice as high as it is in whites.
"The intent is to bring together an experienced multidisciplinary team and have them build partnerships with minority-serving institutions and community groups and really put research into practice," Dr. Lisa Simpson, deputy administrator for AHCPR, said.
"Eliminating disparities in health will require additional research dedicated to a better understanding of the relationships between health status and race and ethnicity," stressed US Surgeon General Dr. David Satcher in a statement. "AHCPR's new research program will help us gain the necessary knowledge to eliminate these disparities and develop new ways to apply existing knowledge toward this goal."
In the same press release, Dr. John M. Eisenberg, AHCPR administrator, echoed Satcher's comments. "Earlier research sponsored by AHCPR and others has given us a good foundation for taking the next step by eliminating racial disparities. The findings of this new research will help close the gap between what we know about racial disparities in health and what we can do about racial disparities in health," he said.
The new Centers fold in nicely with the US Department of Health and Human Services Initiative on Eliminating Racial and Ethnic Disparities and the US Surgeon General's Healthy People 2010 Goal, which aims to eliminate such disparities by 2010.
After apartheid ended, South Africa pushed to get patients out of overcrowded hospitals and into preventive care at community level.
But as fast as the country has built 700 new clinics since 1994, traditional state hospitals have filled with AIDS patients who occupy up to 60 percent of the beds, said South African Health Minister Manto Tshabalala-Msimang.
"We expected the demand for hospital care to drop," she said at a news conference at the headquarters of the African National Congress. "But the HIV and AIDS epidemic has increased the burden."
The briefing was one of a series by the ANC on its progress in ruling the country. Tshabalala-Msimang chairs the party's health committee.
Some 3.6 million South Africans are infected with AIDS, roughly one in eight adults, and the government says 1,500 new infections occur every day, one of the world's fastest rates of increase.
A national AIDS council would be functioning by year's end, in a belated effort, the minister said.
"We should have had the council in place already," she said.
Asked about controversial proposals to treat HIV positive mothers with a drug therapy that includes the expensive AZT, to cut down on transmission to infants, Tshabalala-Msimang said the topic would be discussed in November at a meeting of regional health ministers.
The government has to date rejected the proposal as too expensive and possibly even dangerous in terms of long-term side effects, the minister said.
"We want to make sure that 15 years down the road" there are no regrets, she said.
The health ministers from the Southern African Development Community will also discuss blood safety and development of an HIV-vaccine in November.
"The best route to fight the epidemic is prevention. Abstinence ... faithfulness to a partner ... condoms," she said.
Meanwhile, Tshabalala-Msimang also announced that South Africa remains cautious about using Glaxo Wellcome's AZT anti-aids drug in its hospitals despite the drug giant offering it at a 70 percent discount to world prices.
"It still remains a very expensive drug...We need to be very cautious " Tshabalala-Msimang told reporters.
Tshabalala-Msimang's ministerial predecessor was heavily criticized last year for refusing, mainly on cost grounds, to approve a program to administer AZT to pregnant women in an effort to save their unborn children from HIV.
"It doesn't matter that Glaxo-Wellcome informs us to say that they have reduced the price but the truth of the matter is that they have reduced the price and linked it to the dollar," Tshabalala-Msimang said.
"So when the rand falls, it means we are in trouble," the minister, appointed by President Thabo Mbeki in June, added.
The South African rand has weakened sharply against the dollar over the last two years and was severely ravaged in last year's emerging market crisis.
Glaxo Wellcome has offered preferential pricing for its anti-retroviral medicines, including a 70 percent price reduction of AZT in South Africa compared to the world average.
But AZT availability is still scarce for those with HIV/AIDS and some women who have been raped have found it practically impossible to acquire the anti-retroviral drug.
Most rape victims in South Africa cannot afford the 2,000 to 4,000 rand ($325-$651) for the anti-AIDS drugs, which are not subsidized by the government.
The government wants to promote the manufacture of a local anti-AIDS drug. But its efforts to combat the epidemic are primarily based on improving safe-sex education. The cash-strapped health system has insufficient funds to buy enough drugs that fight HIV/AIDS. (Associated Press)
The National Association for the Advancement of Colored People (NAACP) has launched a national awareness and outreach campaign aimed at addressing the increased prevalence of HIV/AIDS among African-Americans.
The campaign, a partnership with DuPont Pharmaceuticals and AT&T Broadband & Internet Services (AT&T BIS), centers around the distribution of a series of educational films focusing on HIV prevention, detection, treatment and access to care.
Poet and author Maya Angelou, Surgeon General David Satcher, Congresswoman Maxine Waters of California, Julian Bond, Chairman of the NAACP, and Kweisi Mfume, President and Chief Executive Officer of the NAACP, are featured in the films, along with poignant and candid real life dialogue with African Americans affected by the epidemic. The three films will be showcased over the AT&T Cable systems owned by AT&T BIS, as well as highlighted on many of the nation's other cable systems, including those of Cablevision, Comcast, Cox, Falcon, MediaOne and Time Warner. Further, Cable Positive, a non-profit cable industry organization devoted to HIV and AIDS awareness, is supporting the initiative by encouraging cable programming networks to distribute the programs.
"This film project is an important step for the NAACP and our continued commitment to fighting this health epidemic," said Kweisi Mfume, President and Chief Executive Officer of the NAACP. "With the escalation of HIV/AIDS in the African-American community, we are taking the initiative to deal with what has become a national health crisis."
The national HIV/AIDS film outreach campaign promotes prevention of HIV, detection, treatment and improving access to care for African-Americans through a three-part film series that will be made available both nationally and locally through participating supporters. The programs were developed with the help of Academy Award winning producer Donna Dewey and director Mustapha Kahn. The films will be distributed with a discussion guide to AIDS service organizations and to the 2,200 branches of the NAACP across the country. These organizations will use the films and guides to outreach to people in their local communities.
"Anyone who cares about the future of black America had better begin speaking out about AIDS," Coretta Scott King said at the launch of the campaign. As part of the effort, the AIDS Memorial Quilt will be displayed at various colleges throughout the country, starting with the Atlanta University Complex, which includes Morehouse College, Spelman College and Morris Brown College. King pointed to rampant homophobia in the black community as the continuing cause of silence. "AIDS is not talked about very much," she said, adding, "We already had the stigma of race, and now we have
this extra burden. You're discriminated against for being black and for having a disease that has been associated with homosexuality. ... In a way, the silence of good people has been even more harmful than the destructive statements of the homophobic bigots. If we are going to end this terrible epidemic, it's time to end the silence."
"There is a significant need to address the growing problem of AIDS and its devastating effect on the African-American community," said Nicholas L. Teti, President, DuPont Pharmaceuticals Company. "We are committed to working with the NAACP and others on HIV prevention, awareness and education. We commend the NAACP for taking the lead in this important initiative."
"The cable television industry has long been committed to passionately supporting the local needs of the people we serve, and we are proud to partner with the NAACP and DuPont Pharmaceuticals to save lives and make a profound difference in lessening the devastating impact of HIV and AIDS on the African- American community," said Leo J. Hindery, Jr., Former President and CEO of AT&T BIS, and one of the cable industry's foremost voices on AIDS prevention. "We, along with other leading cable organizations, are proud to advocate education, prevention and awareness regarding the impact of HIV and AIDS, and we will use our cable television medium as a method to reach out and make a difference for the future."
According to statistics from the Centers for Disease Control and Prevention (CDC), AIDS is now the leading cause of death in African-Americans ages 25-44. In addition, the agency reports that African-Americans account for 45 percent of reported AIDS cases, although African-Americans make up 13 percent of the U.S. population.
In Philadelphia, African Americans comprise about 42% of the population but over 70% of AIDS cases. (Reuters)