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Issue #207: December 11, 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 American Journal of Public Health, Philadelphia Inquirer, Reuters.
CDC recommends -- but doesn't require -- HIV name reporting
Study says DOT may be needed for adherence.
Family says KLM hastened PWA's death
Epivir approved for hepatitis B
Capone hired as new WTP director
Program seeks counselor to help PWAs find employment
CDC recommends -- but doesn't require -- HIV name reporting
The U.S. Centers for Disease Control and Prevention (CDC) has formally called on the states to implement HIV reporting systems which rely on names rather than unique identifiers, according to draft guidelines issues on December 10th.
While the CDC has clearly preferred name reporting models in past reports, it has traditionally said that it supported a variety of approaches, including the use of codes - the preferred method of most AIDS advocates and AIDS service providers. Code reporting is seen by its supporters as a better guarantee of confidentiality and as less likely to discourage sexual minority people and drug users from coming forward to be tested for HIV.
The first draft of the "Guidelines for National HIV Case Surveillance, Including Monitoring for HIV Infection and AIDS" concludes that "name-based HIV/AIDS surveillance systems are the most likely to meet the necessary performance standards...as well as to serve the purposes for which surveillance data are required."
As of July 1998, a total of 32 states already had an HIV surveillance program, and all states currently have an AIDS case reporting system. The CDC notes that several states already use a unique identifier reporting system.
While recommending name-based reporting, the CDC said it will provide technical assistance to all state and local area programs to establish or continue their programs, "...regardless of whether they use name or non-name based identifiers."
In an attempt to respond to confidentiality concerns, the CDC draft also includes recommendations, as well as certain requirements, for security and confidentiality. Electronic HIV/AIDS databases must eliminate paper records, be protected by computer encryption during data transfer and records must be kept in an area that is physically secured. The guidelines would also require that access to the HIV/AIDS surveillance registry be kept to a minimum of authorized staff and require penalties for violators.
The draft guidelines further stipulate that all HIV testing continues to be voluntary and stress the importance of informed consent, which must be in compliance with local laws.
The CDC guidelines also allow for the continuation of anonymous HIV testing programs. The CDC says that eleven states no longer offer anonymous testing: Alabama, Idaho, Iowa, Mississippi, Nevada, North Carolina, North Dakota, South Carolina, South Dakota, Tennessee and Wyoming.
"Fortunately, states will have the flexibility to decide what type of HIV reporting system works best for their communities," Regina Aragon, public policy director at the San Francisco AIDS Foundation commented.
While acknowledging the guideline's security and confidentiality recommendations, Aragon believes the names-reporting portion is inappropriate and "would most certainly deter individuals from testing and treatment." This will need to be changed in the final draft, Aragon said, "to ensure that the federal government and states are doing everything possible to encourage, not discourage, testing and treatment."
New Jersey already requires HIV reporting by name. Pennsylvania health officials are considering a similar system for the state, although both the Pittsburgh and Philadelphia boards of health are expected to recommend the use of codes in the reporting system.
The CDC guidelines, published in the Federal Register, are open for public comment for 30 days.
A modified form of "directly observed therapy," or DOT, may be an acceptable and feasible intervention to increase adherence by people with HIV/AIDS to highly active antiretroviral therapy (HAART) protocols, according to the results of a pilot study conducted by Brown University researchers.
DOT has been used for many years as a frontline therapy approach in the treatment of tuberculosis, where failure to adhere to treatment regimens has led to the development of highly-drug-resistant new strains of TB. Some human rights activists have criticized DOT because it requires individuals taking the medications to be directly observed taking the drugs. The observations are made by workers visiting the patient's homes or at DOT centers, although in some communities fears that DOT programs are simply precursors to quarantines and other more forcible methods of assuring that people take their medications.
HAART maintains viral suppression only if patients adhere to treatment, and non-adherence is associated with the emergence of drug resistance, the Brown team noted. In response to this problem, Dr. Jennifer A. Mitty of Miriam Hospital in Providence, Rhode Island, and colleagues developed a program for HIV-positive patients based on TB DOT initiatives.
Dr. Mitty presented 1-month data on the pilot study at the 36th Annual Meeting of the Infectious Diseases Society of America held in Denver in November.
Subjects included 23 patients on twice-daily HAART regimens with a history of nonadherence who were referred by their physicians. The mean patient age was 36 years, 50% of the subjects had a history of incarceration and 25% were active substance abusers.
The program used paid peer outreach workers to visit each patient at home and observe the patient taking the morning dose. The second dose was left with the patient, and the following morning the worker recorded whether or not the evening dose had been taken.
The patients were visited Monday through Friday, but were on their own over the weekends.
Thus far, some people have been followed up to 3 months and others have been followed for 1 month, Dr. Mitty said.
Among 10 participants for whom laboratory tests were available, there was a mean 1.2 log drop in viral load and a mean CD4 count increase of 60 cells per microliter after about 1 month's time, Dr. Mitty explained.
Dr. Mitty believes the "most striking" finding was how willing people were to participate in the program and how much they liked it. "We've actually tried to taper people off and some don't want to come off [the program]; they enjoy the daily visits."
"Adherence is a big problem with the medications, especially in the hard-to-reach populations, such as people with a history of substance abuse," Dr. Mitty said. Everyone has a hard time taking these drugs, she added.
The pilot intervention, for which enrollment is ongoing, is to continue for 6 months. At that point, the researchers hope to evaluate the findings to determine the optimal length for this intervention strategy.
Steven Hutchings, the PWA who was delayed by KLM airlines in Johannesburg from coming to Philadelphia for AIDS care last month, died only several days later at Presbyterian Hospital.
Hutchings was prevented from traveling from his current home in Zimbabwe to Washington after a KLM pilot refused to allow him to board the plane. Hutchings was eventually able to fly to the U.S. on a South African Airways flight, over two days after his original arrival date.
After KLM's action, a national campaign to force the airline to get Hutchings to medical care in the U.S. was organized by Michael S. Hinson, director of The Colours Organization, an email campaign by We The People, and by Hutchings' brother, Gregory, a board member of Colours. After arriving in New York, Hutchings was transferred to Philadelphia, where he died five days later.
As a result of the KLM pilot's refusal, a routine 16-hour trip from Africa to the U.S. expanded to more than two days.
Steven Hutchings was 37 years old.
The Philadelphia Inquirer reports that U.S. Rep. Robert Brady has asked KLM "to explain why it put him off the plane in Johannesburg, since he had a ticket to Washington and medical clearance to fly. The paper reports that Hutchings' family believes the ordeal hastened his death.
The Inquirer says that Hutchings' family is demanding a formal apology from KLM, which the family believes quickened his death by delaying him for over two days at the Johannesburg airport. The report says that Gregory Hutchings an AIDS activist in Washington, has pressed the matter with U.S. officials, drawn attention from media in South Africa, and contacted 250 friends and associates worldwide on the Internet.
"Based upon information supplied by the family, the treatment afforded Hutchings by KLM was callous, discriminatory, and may have well hastened his death," Rep. Brady wrote in a letter dated Dec. 3 to the airline.
Brady's spokeswoman, Karen Warrington, told the Inquirer said the airline had written back to say it was still investigating why Hutchings was not allowed to continue flying to Amsterdam and then on to Washington. The airline also told Brady he would get a copy of a final report to Hutchings' family.
However, on its web page, KLM is denying that AIDS had anything to do with the delay in Hutchings' flight to the U.S.
"At no time was a decision made by KLM not to transport the passenger because he was suffering from AIDS," the statement says. The airline said its crew and medical personnel became concerned after Hutchings told them during the first leg of his flight, from Harare, Zimbabwe, to Johannesburg, that he was suffering from a form of tuberculosis.
"In fact, KLM did not learn that the passenger had AIDS until sometime after he left our KLM aircraft in Johannesburg," the statement says. "KLM's decision not to transport the passenger to Amsterdam was made solely on the basis of his weak physical condition, his apparent inability to endure a lengthy flight to Amsterdam and a second, lengthy flight to Washington, D.C., and our inability to determine immediately how his physical condition might affect his fellow passengers."
The airline said it ultimately secured a direct flight for Hutchings from Johannesburg to New York on South African Airways.
Gregory Hutchings, however, said that KLM blocked his own efforts to help his brother and he was forced to use his contacts to get the U.S. Department of State and officials from the South African and the French governments to intercede.
A sympathetic KLM employee contacted a friend with South African Airlines who arranged for Hutchings' direct flight to New York, Gregory Hutchings said.
U.S. carriers cannot refuse to board a passenger with an illness unless it is both serious and can be transmitted through casual contact, Bill Mosley, spokesman for the U.S. Department of Transportation, told the Inquirer. The department does not regulate foreign carriers, however, he said.
Hutchings' family said he had sufficient medical clearance to prove to KLM that he could fly to the United States at no risk to himself or others.
When Hutchings arrived in New York on Oct. 25, he was rushed to a hospital. Two days later, Hutchings was transferred to Presbyterian Medical Center. He soon developed a high fever. He died three days later.
His family, which is awaiting an autopsy, contends that the way KLM treated Hutchings put him through more trauma and stress than he could handle.
"If he would have gotten here when he was supposed to . . .," said his sister, Lynn Ryder, "we know he would have died eventually, but he would have lived at least a couple more months." A KLM spokeswoman said the airline had received "many, many, many" e-mail messages criticizing its handling of Steven Hutchings. Gregory Hutchings said a protest rally against KLM is planned for December 18th in Washington.
"No one should be put against these type of odds when they are trying to get home," he said. "I'm fighting for justice, and I'm also fighting to not have this happen to other people who have HIV/AIDS."
The U.S. Food and Drug Administration has approved Glaxo Wellcome's lamivudine (Epivir-HBV) tablets and oral solution for treatment of adults with chronic hepatitis B associated with evidence of hepatitis B viral replication and active liver inflammation.
In a press release posted on PR Newswire, Glaxo Wellcome cited data from the World Health organization that there are approximately 350 million people worldwide with chronic hepatitis B infection, of which about a third are at risk for serious progressive liver disease. The U.S. Centers for Disease Control and Prevention estimate that there are about 1 million people in the U.S. with chronic hepatitis B. many of them also people with HIV infection.
According to Glaxo Wellcome, Epivir-HBV interferes with viral replication and reduces inflammatory response to hepatitis B virus in the liver.
Dr. Willis Maddrey, professor of internal medicine at the University of Texas Southwestern Medical Center at Dallas, said, "Clinical data show that Epivir-HBV suppresses viral replication and significantly improves liver histology in patients receiving treatment for 1 year...In addition, the drug was well-tolerated in the 52-week studies."
Dr. Gervais Dionne, executive vice president of research and development at Laval, Quebec-based BioChem Pharma, said, "We are confident that this once-a-day oral tablet will provide a convenient and generally well-tolerated treatment option for this large unmet medical need."
In what researchers are calling "a new phase" in the HIV epidemic, between 1991 and 1996, HIV seroprevalence declined among injection drug users in New York City, according to an analysis conducted by Dr. Don C. Des Jarlais of the Beth Israel Medical Center in New York.
Dr. Des Jarlais and his associates analyzed the temporal trends in HIV seroprevalence using data from five studies that included 11,334 IDU serum samples. The subjects were recruited from detoxification and methadone maintenance programs, two research storefronts (Lower East Side and Harlem) and STD clinics.
Overall, the investigators detected declining HIV seroprevalence during this period from all five studies: from 53% to 36% in subjects in a detoxification program, from 45% to 29% in the methadone program participants, from 30% to 21% in the STD clinic patients, from 44% to 22% in the Lower East Side program and from 48% to 21% in the Harlem program.
This changing trend is likely to be explained by two processes, the researchers said.
Many IDUs became HIV-positive in the late 1970s and early 1980s, and many of these individuals have died. Others have stopped injection drug use and sought treatment or have become too ill to continue to obtain illicit drugs.
The second process has been a reduction in HIV risk behavior, which began among injection drug users around 1983. This was continued through outreach programs in the late 1980s and syringe exchange programs in the early 1990s.
The reduced HIV seroprevalence, combined with continued risk-reduction behavior, should lead to fewer new HIV infections. However, Dr. Des Jarlais' group points out that "...when there are more seronegative persons at risk for infection, any increases in risk behavior may lead to large increases in the number of new infections."
Therefore, this decline in HIV seroprevalence "...may signal a particularly appropriate time to increase efforts to reduce HIV transmission among IDUs in New York City."
Robert Capone, who has acted as interim director of We The People since the resignation of Curtis Osborne last spring, was formally appointed as executive director of the organization by the board of directors at its meeting on December 9th.
Roy Hayes, who chaired the search committee for a new director, said that the organization reviewed nine potential applicants for the position, but that none brought the experience and commitment to people with AIDS that Capone demonstrated.
Capone is the seventh WTP director since its founding in 1987. The first director, Bob Pearson, died after less than a year in the post, and was followed over the next four years by two "administrators," Arnold Jackson and Charles Harpe. Harpe was replaced by David Fair in late 1991, and Fair served until early 1996, when he was replaced by Joe Cronauer. When Cronauer was appointed as interim co-director of the city's AIDS Activities Coordinating Office, he was replaced by Curtis Osborne, who himself took a city position earlier this year.
Capone, who is living with HIV disease, formerly served as WTP's Director of Education and as director of the Living Positive Treatment Center, a substance abuse treatment program now affiliated with We The People.
Matrix Research Institute's Project KEEP, which provides job finding and ongoing support for people with HIV/AIDS seeking to return to the workforce, is looking for an Employment Supports Counselor.
The position provides skills training, career development assistance, advocacy, case management and anti-stigma education to PWAs seeking jobs. Applicants who are bilingual and who have two years experience in related services are especially encouraged to apply. Applicants are also expected to have a bachelor's degree.
Project KEEP is a federally-funded program. Applicants should send a resume and cover letter to MRI Project KEEP, 42 S. 15th St. - Suite 318 , Phila. PA 19102.
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