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September/October 2003


AIDS Social Security Rules Studied

In a move that could be felt by people with AIDS currently receiving federal disability benefits or those who might need them in the future, the Social Security Administration is seeking comment from the public on how best to revise the rules it uses to define who is disabled by an immune system disorder. The rules determine what illnesses or conditions a person must have to be considered disabled.

People who are disabled by AIDS can get a basic benefits package of $552 a month and they are enrolled in Medicaid, the federal health insurance program for the poor and disabled. Some states provide additional benefits, but only after a person with AIDS has met the Social Security definition of disabled. "It's a minority of states, but it's a minority of states including New York and California," said Ann Hilton Fisher, executive director of the AIDS Legal Council of Chicago.

Tens of thousands of people with AIDS are receiving the federal benefits. SSA has not revised the rules since they were created in 1993, though it has extended the expiration date of the rules four times. SSA is soliciting comments through July 8 on how best to revise the rules. After that it may revise them, which would require another period for public comment before they take effect, or extend them again.

New drugs have improved the lives of people with AIDS, but the drugs also have side effects such as diabetes or heart disease caused by high cholesterol. "Virtually none of these are specifically addressed in the listings," said Leslie Kline Capelle, a benefits attorney in Los Angeles. Fisher wants revisions that recognize that some people with AIDS may be well enough to work, but they may also need to go back on disability. The rule changes could make it tougher for people with AIDS to receive benefits. "We're certainly fearful that an administration that has been hostile to public benefit programs might look at this an opportunity to save some money," said Michael Kink, legislative counsel at Housing Works. (Gay City News [New York City], 05.23.03, Duncan Osbourne)

Study: Condoms Don't Increase Teen Sex

Teenagers at high schools where condoms were available were no more likely to have sex than other teens, a study says. The study published Wednesday backs earlier research on the programs developed in the 1990s to stem the spread of HIV and reduce teen pregnancy. It says that students in high schools with condom programs were more likely to use condoms, while students in other high schools were more likely to use other forms of birth control. Overall, there was no difference in pregnancy rates. The study could not determine if there was an increase in STDs.

Researchers at George Washington University School of Public Health and Health Services examined high schools in Massachusetts where the state Department of Education encouraged schools to develop condom programs. The study took a sample of all high schools, comparing students at nine schools that made condoms available with those at 50 schools that did not. They found 49 percent of students at non-condom schools reported having ever had sex, compared with 42 percent of those at schools with condoms available. "The concerns of the small minority of parents who oppose providing condoms or related instruction in schools were not substantiated," wrote lead author Susan M. Blake and her colleagues.

The Massachusetts study also found that:

  • Schools offering condoms were more likely to teach students how to use them properly.

  • Students at condom schools were more likely to have received information about HIV/AIDS.

  • Students at schools with condom programs were no more likely than others to say that condoms were easily available, even (though they were more likely to use them). (Associated Press, 05.28.03, Laura Meckler)

Many Mistakenly Think AIDS Vaccine Here, But Kept Secret

A full 20 percent of American adults mistakenly believe that a vaccine for HIV/AIDS already exists but is being kept from the public, according to a new government study. Ignorance of the slow rate of progress in the development of an AIDS vaccine is rampant among US citizens, the survey finds, and is especially high among black and Hispanic populations, which have been hit hardest by the disease. The survey of 3,500 individuals was conducted by the National Institute of Allergy and Infectious Diseases. NIAID Director Dr. Anthony S. Fauci said his agency plans to boost education efforts "to help correct misconceptions and advance public understanding of ongoing and future HIV vaccine research."

According to the survey, 84 percent of Americans rate HIV/AIDS vaccine research as either "extremely" or "very" important. This number is even higher among minority populations at highest risk for HIV, with 96 percent of black Americans and 94 percent of Hispanics agreeing that the quest for a vaccine is of paramount importance. However, many also believe that a vaccine already exists but is being kept "secret" from patients and the general public. One in five Americans subscribe to this view, with the number rising to 28 percent and 48 percent of Hispanic and African-American respondents, respectively.

Among other survey findings were that 42 percent of those interviewed did not know that vaccines require any testing on human volunteers before being made available to the public. Nearly a third erroneously believed that prospective vaccines could cause HIV in human test subjects, while 44 percent were unsure about such dangers. Such misconceptions could hamper recruitment of volunteers for clinical trials, experts say.

"HIV vaccine research is our best hope, along with other prevention and treatment efforts, to slow the spread of HIV," Fauci stressed in a NIAID statement. Promising vaccine studies are underway in over 60 research centers in the United States alone, with more than 12,000 individuals participating in trials worldwide, according to NIAID. (Reuters Health, 05.16.03)

NYC/NYS AIDS Ruling Upheld by Feds

The US Court of Appeals for the 2nd Circuit in Manhattan ruled on June 9 that New York City and New York State may be ordered to comply with federal, state, and local law to ensure that persons with HIV/AIDS can access benefits to which they are entitled, such as Medicaid. The ruling upheld a Dec. 11, 2001, injunction issued by US District Court Judge Sterling Johnson Jr. against city and state officials. Attorneys from Housing Works, an AIDS services group, and the HIV Law Project were among those representing six plaintiffs with AIDS.The plaintiffs were Medicaid-eligible people with low or no incomes and no private insurance who were dependent on government stipends for food and rent.

The appeals court reaffirmed that the Division of AIDS Services and Income Support (DASIS) -- now known as the HIV/AIDS Service Administration (HASA) -- within the city's Human Resource Administration (HRA) frequently failed to meet its own deadlines for providing services, and that the agency was so understaffed that caseworkers could not provide the services envisioned by the authorizing ordinance. The primary appeals issue was whether such a failure was a violation of federal law -- Section 504 of the Vocational Rehabilitation Act and Title II of the Americans With Disabilities Act -- by the city and state. Mayor Michael Bloomberg's administration argued that HRA overall was so dysfunctional that people with HIV were no worse off than other, non-disabled applicants for city benefits. Plaintiffs should have to prove that DASIS failings have a "disparate impact" on HIV-infected benefits applications, the city argued.

The appeals court rejected that argument and also rejected the state's arguments that it should be let off the hook because administration of benefits is a local function. The court noted that, under federal law, the state retains supervisory responsibility for the administration of these benefits, many of which are paid for with federal funds that pass through state agencies on their way to the city. Thus, it was appropriate to name both state and local officials in the injunction, and to place the mandate of the court on both levels of government to see that benefits are properly distributed to those who are eligible to receive them. (Gay City News [New York City], 06.13.03, Arthur S. Leonard)

Balm in Gilead Using Church to Start Black Dialogue on AIDS

About 300 black church pastors and activists who gathered in Charlotte, N.C., for a meeting on AIDS in the black community got a simple message from Balm in Gilead founder and head Pernessa Seele: Get involved. Balm in Gilead has for 14 years helped black churches address AIDS in their communities through prayer, education and outreach. "Twenty-two years into this epidemic, the response to this disease continues to be driven by politics and theology -- not by public health and compassion," said Seele, whose group organized the meeting. "If we're looking for someone to come and save us -- sorry."

According to CDC, more than half of the estimated 40,000 new HIV infections each year occur among blacks, though blacks make up less than 15 percent of the US population. One in 50 black men is HIV-positive, and over 60 percent of AIDS cases reported among American teenagers in 1999 were among black teens. "These numbers did not become alarming just yesterday," Seele said. "They have been alarming in our community for 22 years."

In addition to trying to initiate discussion of AIDS in the black church community, the Balm in Gilead provides technical support to churches that want to get more actively involved in the fight against the disease. Workshop topics at the meeting included strategies for mobilizing a church community on the issue; where to go for funding; how to teach abstinence; and how to teach survival techniques to teenagers, including awareness, condom use and abstinence.

Seele said her group has helped churches start HIV testing programs, build housing for people with the virus and establish case-management programs. She said the agency fields about 200 calls for technical assistance each week. (Associated Press, 06.04.03, Tim Whitmire)

Heart Transplant in HIV-Positive Man Raises Ethics Issues

A 39-year-old Harvard scientist previously diagnosed with AIDS has survived two years since receiving a heart transplant, according to a report released Wednesday, possibly opening the door for other HIV-infected patients to become candidates for the procedure. Donor hearts are in short supply, and the medical community must decide if HIV-infected patients -- previously considered ineligible due to a poor expected prognosis -- should routinely be placed on transplant waiting lists, said the report in the New England Journal of Medicine.

"This was a benchmark kind of study," said Dr. Gregory Curfman, executive editor of NEJM. The study, along with preliminary results from studies of liver and kidney transplants, "provides hope" that some HIV-infected patients can benefit from a transplant, said an editorial by Drs. Michelle E. Roland and Diane V. Havlir of the AIDS Division of the Positive Health Program at the University of California-San Francisco.

Currently, the National Institutes of Health is conducting a study of 150 kidney transplants and 125 liver transplants in HIV-infected individuals, Roland and Havlir noted. "Originally that study was to include heart transplantations, but its design was revised to focus on those organs for which there is a greater need. It is hoped that funds will become available to add heart transplantation if the preliminary results are positive," wrote Roland and Havlir. To date, the bulk of organ transplants among those with HIV have involved kidney and liver transplants.

Many transplant centers have been reluctant to allocate donor organs to HIV-infected patients, believing that immune system-suppressing drugs -- which must be taken by transplant patients for the duration of their lives -- could further damage an HIV patient's already compromised immune system. But research has suggested that HIV infection does not necessarily affect a patient's response to the new organ. Furthermore, immunosuppressive therapies do not appear to increase an HIV-infected patient's susceptibility to infections.

The heart transplant patient, Dr. Robert Zackin, a researcher at the Harvard School of Public Health, was diagnosed with an AIDS-defining infection in 1992. After receiving chemotherapy for Kaposi's sarcoma, he developed heart failure, possibly as a result of the cancer treatment. He underwent heart transplantation in February 2001. Zackin -- who is also a senior author of the report -- reportedly has not experienced any new or reactivated opportunistic infections, and HIV therapy continues to keep his virus levels low. Although he experienced several episodes of organ rejection, requiring him to receive blood transfusions every two or three weeks, Zackin continues to work full-time and exercise regularly, according to the study. (Reuters Health, 06.04.03, Keith Mulvihill)

Volunteers for New HIV Drugs Get Harder to Find

Strengthened by newer drugs that can make HIV more of a chronic disease, Americans with the virus are much less likely to try unapproved therapies that could possibly benefit patients worldwide. According to AIDS experts, treatment improvements and demographic changes in the populations affected by the disease have hindered efforts to recruit patients into clinical trials. "There is not the incentive people once had," said Marty Keale, executive director of the Center for AIDS Research, Education and Services in Sacramento. "When you are speaking of HIV, more than any other disease, clinical trials and research are a key way for people to get cutting-edge drugs," said Dr. Donna DeFreitas, an infectious disease specialist at the University of California-Davis. Terry Wilson, who runs an AIDS volunteer program, said the "backbone" of the AIDS research population, Caucasian gay males, "are tired and suffering from AIDS fatigue." Wilson believes complacency and inconvenience are deterring volunteers. Also needed in research are African Americans, Latinos and women, as their percentage of all HIV cases surges. (Sacramento Bee, 06.07.03, Dorsey Griffith)

FDA Approves First Once-Daily Protease Inhibitor for AIDS

The first once-a-day protease inhibitor to treat AIDS has received government approval. Manufactured by Bristol-Myers Squibb, Reyataz requires just a once-daily dose of two pills, taken with food -- in addition to whatever older medications patients take as part of their daily cocktail.

Protease inhibitors -- a powerful type of drug that revolutionized HIV care in the mid 1990s -- taken with older AIDS medicines suppress HIV enough to allow many patients to stay healthier for years longer. But the drug cocktails require patients to swallow handfuls of pills several times each day. Currently, there are six other protease inhibitors on the market, but all require taking pills two or three times a day. Reyataz, known chemically as atazanavir, appears to work as well as other protease inhibitors. But a common side effect of other protease inhibitors is a rise in cholesterol -- and Reyataz does not appear to cause that problem for some reason, the Food and Drug Administration said.

However, Reyataz can cause up to 24 percent of patients to experience jaundice, a yellowing of the skin or eyes. It seems to quit when patients stop taking the drug, and does not appear to be associated with liver injury, according to the FDA. Other side effects from Reyataz include infection, nausea, headache and diarrhea.

The FDA approved the use of Reyataz as part of combination HIV therapy on Friday. Bristol-Myers plans for the drug to hit pharmacy shelves next month. But the company would not reveal the drug's price, saying only that it would be competitive with other protease inhibitors. (Associated Press, 06.20.03)

HIV Therapy: Early Treatment Extends Life

A study led by Dr. Bruce Schackman of Weill Cornell Medical College shows that early antiretroviral therapy for HIV-positive patients may significantly increase life expectancy -- even after accounting for side effects like heightened cholesterol levels. And though early therapy is still being denied to many patients because of cost, it was found to be cost-effective.

In the study's computer simulation model, the projected life expectancy of a 37-year-old patient receiving early highly active antiretroviral therapy was nearly three years longer than that of a patient receiving delayed therapy (16.54 years vs. 13.73 years), even assuming increased cholesterol levels, a side effect associated with the therapy. This benefit is attributable to HAART's effectiveness in reducing HIV viral levels, which improves CD4 cell count and leads to a reduction in the likelihood of opportunistic infections. The study also compared life expectancy for early vs. delayed therapy assuming no cholesterol side effects, and the results were similar (16.66 years vs. 13.80 years).

The timing of HAART initiation has been the subject of controversy because of the drugs' side effects, including elevated cholesterol and fat redistribution (a condition that may have a negative effect on the patient's quality of life but is not life-threatening). Last year the US Department of Health and Human Services changed its recommendation for initial HAART use: It suggested offering HAART only to those patients with somewhat more advanced disease (viral loads of greater than 30,000 copies/mL or CD4 cell count less than 350/µL).

The current study's findings suggest that HIV patients who choose early treatment offered according to current guidelines will benefit. "Changes in cholesterol levels or quality of life associated with HAART should not be used by government or private payers to justify placing limitations on access to early HIV treatment," said Schackman, an assistant professor of public health. "We know that access is being denied due to budget limitations among AIDS Drug Assistance Programs, which frequently pay for early treatment for HIV patients who are too healthy to qualify for Medicaid. [ADAPs] in 10 states have one or more program restrictions, including capped enrollment, limited drug coverage, or expenditure caps. Early treatment is cost-effective, so enrollment caps that delay access until the patient's HIV disease becomes more advanced are an inefficient reallocation of resources."

Early HAART is more expensive than delayed treatment. However, its cost-effectiveness ratio -- a measure of "value for money" -- is well below the median for all medical interventions nationwide. Early HAART's cost-effectiveness ratio was shown to be $13,000 per quality-adjusted life year, with or without the consideration of increased risk of heart disease. Even after adjusting for the decline in quality of life that may be associated with fat redistribution, early HAART's cost-effectiveness ratio was $17,000-$24,000 per quality-adjusted life year. This ratio is less than half that for cholesterol-lowering drugs used to prevent coronary heart disease in men without HIV. (AIDS Weekly, 05.26.03)

Articles in the Newsline section are derived from the press abstracting service run by the National Prevention Information Network (NPIN) of the Centers for Disease Control and Prevention (CDC).

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This article was provided by Body Positive. It is a part of the publication Body Positive.