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Issue #142: September 14, 1997
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 information in this issue include AIDS Action, AIDS Policy and Law, American Journal of Epidemiology, Arizona Republic, New York Times, Reuters, San Francisco Chronicle.
FIGHT to open Lax Treatment Center
House nixes needle exchange funding
Journal supports mandated HIV reporting
Lung cancer linked to asymptomatic HIV infection
Court says HIV infection along not disability
Clinton wants police access to medical records
SUPPORT WE THE PEOPLE THROUGH THE 1997 AIDS WALK!
FIGHT to open Lax Treatment Center
Philadelphia FIGHT, the local community-based AIDS research project, has announced that it will open its pilot program for its Jonathan Lax Immune Disorders Treatment Center on September 16th.The Lax Center, named after a longtime AIDS treatment advocate who was among the founders of FIGHT, We The People, ACT UP and other AIDS efforts in Philadelphia, is the first comprehensive AIDS treatment center in Philadelphia that is dedicated to providing state-of-the-art AIDS care to individuals regardless of whether or not they have the ability to pay. The pilot program is supported by a grant from the city health department utilizing Ryan White CARE Act Title I funding.
Uninsured people living with HIV infection will be able to get free care through the new program.
Jane Shull, executive director of FIGHT, said that the Lax Center will begin offering two clinics under the pilot project. These include a primary care clinic, led by Derrick Tolbert-Walker, M.D. and Patrick Loynd, CRNP, and a nutrition and wasting clinic, led by Norma Muurahainen, M.D., Ph.D.
Each clinic will operate two sessions per week during the pilot stage.
The primary care clinic will be located at FIGHT's offices at 1233 Locust Street on the 5th floor. The nutrition and wasting clinic is being developed in collaboration with St. Joseph's Hospital at 16th Street and Girard Avenue, which will host one of the clinic sessions, with the other operating at FIGHT.
To make an appointment at either or both of the clinics, individuals should call FIGHT at 215-985-4448. Individuals without insurance are eligible for service at the clinics.
House nixes needle exchange funding
By a vote of 266 to 158, the U.S. House of Representatives has passed a bill which would repeal the authority of the Secretary of Health and Human Services to allow federal funding to be used to support syringe exchange programs.The language was included in an amendment to the appropriations bill for the Department of Health and Human Services, which includes most federal AIDS care and research funding. The bill now goes to a conference committee with the Senate, which has not included the provision in its bill.
Members of the conference committee, which will iron out differences in the House and Senate appropriations bills, have not yet been appointed, according to the AIDS Action Council.
Meanwhile, the Senate has passed its HHS appropriations bill. No changes were made to HIV/AIDS-related funding proposed by the Labor/HHS Appropriations Committee and no amendments that would adversely affect the HIV/AIDS community were offered.
In the House, several negative amendments directly affecting HIV/AIDS-related programs and funding were expected during floor debate of the appropriations bill. Of these, two have failed. An amendment to increase AIDS Drug Assistance Program (ADAP) funding by cutting the funding for other AIDS services was defeated, 282-141. A second amendment, to transfer $5 million to the Ryan White AIDS Pediatric Demonstration program from Title X family planning was not offered -- the sponsoring legislator failed to introduce the provision at the correct time.
The Coburn/Ackerman (D-NY) amendment to prohibit federal funding of "blind" HIV testing of newborns has not yet been offered, and AIDS Action said its sources say that it might be withdrawn.
Journal supports mandated HIV reporting
The New England Journal of Medicine, on of the nation's leading medical journals, is urging mandatory reporting of HIV infections to state health departments to increase the chances people will get early treatment, according to Dr. Robert Steinbrook, the journal's deputy editor.HIV infection is a reportable disease in New Jersey, but is not in Pennsylvania. In recent years, plans by the Rendell Administration which were seen as leading to eventual HIV reporting have faced severe opposition from local AIDS advocates.
In an editorial, Steinbrook argues that HIV infections should be reported "just like tuberculosis and many sexually transmitted illnesses" because new treatments started soon after infection may improve outcomes.
Reporting of HIV infections has been highly controversial because of privacy fears and the lack of funding to assure that persons diagnosed with HIV infection will actually be able to obtain early treatment because of its cost.
In the editorial, Steinbrook argues that "the availability of better therapies and our rapidly expanding knowledge of the molecular biology of HIV creates new opportunities to control the AIDS epidemic." He notes that of the "estimated 650,000 to 900,000 HIV-infected people in the United States, many do not know that they are infected," and that some states with the highest rate of infection, such as New York and California, don't require reporting of HIV infection. Steinbrook calls for a "more comprehensive and coordinated approach to HIV infection" with four main components: "a national standard for HIV reporting, greater access to effective medications, improved access to physicians experienced in treating the disease and protection of patients from violations of privacy and discrimination." He notes that "people with HIV infection need strong guarantees that their privacy will be maintained and that they will not face discrimination in employment, insurance or elsewhere," and that mandatory reporting of HIV infection will only succeed "as part of an overall strategy that incorporates protection against discrimination."
Rep. Nancy Pelosi (D-CA) and several groups attacked the newly recommended policy as dangerous. While treatments have improved enormously in recent years, the groups still fear that mandatory reporting would discourage many people from being tested for the virus. In addition, critics of mandatory reporting believe that those infected by HIV would be discriminated against by insurance companies and employers.
Lung cancer linked to asymptomatic HIV infection
A large multicenter group reports that the patterns of cancer among asymptomatic HIV-positive individuals are similar to those reported for AIDS patients. However, a new trend toward increased risk of lung cancer appears to be emerging among young, white homosexual or bisexual HIV-positive men who have not get progressed to AIDS.The researchers observed five cases of lung cancer among white, homosexual or bisexual men and calculated the incidence to be 0.18 per 100 person-years, which suggests a high rate of lung cancer for this subgroup.
Although the incidence of malignancy in AIDS patients has been previously reported, few studies have focused on cancer rates in HIV-positive individuals who have not developed AIDS. Therefore, Dr. Christine Cole Johnson of the Henry Ford Health Science Center in Detroit, Michigan, and members of the Pulmonary Complications of HIV Infection Study Group investigated the incidence of cancer in a cohort of 1,073 asymptomatic subjects with HIV infection. They reported their findings in the September 15 issue of the American Journal of Epidemiology.
Dr. Johnson's group also examined the cancer incidence for subjects in different HIV transmission groups. In this cohort, which was predominantly white and male, 813 were homosexual or bisexual and 260 were injection drug users.
The overall "...cancer incidence was 3.99/100 person-years." There was an increased risk of Kaposi's sarcoma (KS) and non-Hodgkin's' lymphoma (NHL) in this asymptomatic cohort, similar to patients with AIDS. "Total cancer incidence was higher among nonblacks than among blacks."
In homosexual or bisexual subjects, the rate of KS was higher compared with subjects with other risk factors. The investigators also found that compared with whites, blacks had lower rates of KS and NHL. They note the rate of NHL in the homosexual or bisexual subjects was "substantially higher" compared with asymptomatic HIV-positive hemophiliacs.
Court says HIV infection along not disability
The case of Runnebaum v. NationsBank of Maryland, in which an HIV-positive man filed a discrimination complaint against his employer based on the Americans with Disabilities Act, has been dismissed.The 4th US Circuit Court of Appeals determined that asymptomatic HIV infection is not a disability, according to the September 5 issue of AIDS Policy and Law.
The court decided that "...Runnebaum failed to make a prima facie case of discrimination because his work performance did not meet his employer's legitimate expectations," the article continued. In addition, the majority (six of seven) of the judges also ruled that the plaintiff failed to prove that HIV infection is a disability.
Specifically, the court decided that the plaintiff did not show that HIV infection meets criteria for protection under the Americans with Disabilities Act. This would include proof that HIV infection is an "impairment' that "substantially limits" a major activity of life, according to Judge Karen J. Williams. "Without symptoms, there are no diminishing effects on the individual," Williams said.
Not everyone agrees. The court's decision "amounts to an outright repeal" of the congressional intent to protect all individuals with HIV infection from discrimination, argued Judge Blane Michael in a dissenting opinion. And New York Law School professor Arthur S. Leonard called the decision "..the most arrogant form of conservative judicial activism" that he's seen.
The plaintiff's only other option now is to appeal to the US Supreme Court. Opinions on whether or not it will hear the case are mixed.
Clinton wants police access to medical records
Bowing to federal and state law-enforcement authorities, Clinton administration officials will soon propose legislation that would allow police officers to gain broad access to patients' medical records, with hardly any restrictions on use or redisclosure of the data, according to a report in the New York Times.Law enforcement officials can currently negotiate access to such materials, but the new law would allow both provider and payers to disclose medical records without patient authorization.
The proposal is significant because federal and state officials have, in recent years, placed much higher priority on investigations of fraud in the trillion-dollar health care industry.
Health and Human Services Secretary Donna Shalala was expected to propose the new regulations at a congressional hearing on September 11th on the issue of medical records privacy.
The new regulations are expected to include new safeguards that will limit access to medical records by employers, researchers, drug manufacturers and direct-marketing companies. However, law enforcement officials would be exempt from most of the standards, making it easier for them to get access to medical records than to the records of banks, cable television, video rental stores or E-mail users.
In addition, authorities would not be required to get court orders or to notify patients when they seek medical records. Patients would not be assured of an opportunity to challenge the disclosure of their files, even though the records could later be used against them in investigations or prosecutions. However, providers would have to keep logs documenting any disclosures of patient records which could, according to the administration, be used to trace improper disclosures.
Shalala told the Times that patients damaged by the improper disclosure of medical records should be able to file lawsuits in federal court to obtain compensation.
The Justice Department argues that both investigators and prosecutors need fast access to confidential records to conduct investigations. According to Andrew Fois, an assistant attorney general, there is "no documented history" to suggest that the administration's proposal may be problematic. However, Deidre Mulligan, a lawyer at the Center for Democracy and Technology, said, "It's easy to claim that there have been no violations because there are few laws to violate." While Shalala's recommendations call for civil penalties for repeated improper disclosures of medical information, they don't specify "how or whether law-enforcement officers might be penalized if they disclosed confidential medical data for a purpose unrelated to law enforcement."
All of the major medical records privacy bills introduced in Congress would impose greater restrictions on law-enforcement authorities than the administration's bill, according to the Times.
FDA "reform" challenged
Representatives from public health, consumer and women's groups have charged that the bill currently under consideration in the US Senate to revise the role of the Food and Drug Administration would endanger the public's health. "This is a bad bill," said former Senator Howard Metzenbaum, now chairman of the Consumer Federation of America. "It will cause untold people to lose their lives and others to become seriously ill."More than 100 organizations, including Consumers' Union, the AIDS Action Council, the American Public Health Association and the National Women's Health Network, sent a letter to all senators urging them to vote against the bill unless significant changes are made. "S. 830 would erode the FDA's ability to properly evaluate drugs and medical devices before and after marketing and would also allow companies to make claims about drugs and food products without sufficient evidence," said the letter.
The Senate has begun debate on the measure, but the debate has been slowed by procedural objections raised by Sen. Edward Kennedy, D-MA, who is leading the opposition to the bill. Kennedy has been particularly critical of a portion of the bill that would prohibit states from imposing their own regulations or labeling requirements on cosmetics. "The only reason preemption of cosmetic regulation is in the legislation is to increase the already swollen profits of this greedy industry," he said. "The last thing Congress should do in a bill called 'FDA Reform' is to give the cosmetics industry a blank check to poison the American people with its products."
But Sen. William Frist, R-TN., a physician who helped write the bill, told reporters in a separate meeting that the measure gives states all the power the states need to protect the public from potentially dangerous cosmetic products. "This whole idea of the federal government overriding the states' ability to protect the consumer is false," he said.
Frist also said he was confident that the bill would be approved by the Senate within the next week or so and signed into law "...within the next two months." All the remaining issues in dispute, he said, including not only cosmetics regulation, but also whether medical device manufacturers should be required to advise FDA of all intended uses, "...are manageable issues that can be addressed and I predict will be addressed."
SUPPORT WE THE PEOPLE THROUGH THE 1997 AIDS WALK!
The annual Philadelphia AIDS Walk takes place on Sunday, October 19, 1997 and is a great opportunity for everyone to raise money to support and fund AIDS services in the Philadelphia region.We The People Living with AIDS/HIV of the Delaware Valley would love it if you would join our team, whether you're a member of We The People, a friend of people living with HIV/AIDS, or just someone who'd like to help.
The AIDS Fund, which sponsors Philadelphia's annual AIDS Walk, last year raised $35,000 for We The People's LifeSavers Fund, which provides emergency assistance to people living with HIV/AIDS, and another $55,000 for our ongoing support services for low-income and homeless people with HIV disease. Over a million dollars was raised for over sixty other critically-needed AIDS services in the Philadelphia region as well.
Won't you help? We're Team #33, and you can register NOW at We The People's Life Center, 425 South Broad Street, or on the web at http://www.CritPath.Org/aidsfund/indreg.html.
And if you can't walk, please make a donation anyway. Checks can be written to the "AIDS Fund" and sent directly to the AIDS Fund office at 1227 Locust Street, Philadelphia, PA 19107. Please remember to mention We The People or Team #33 on your check.
If you do want to walk, the event starts (rain or shine) at the Eakins Oval on the Ben Franklin Parkway in Philadelphia. Sign-in and Opening Ceremonies begin at 9 AM; the Walk starts promptly at 11 AM.
Register NOW to walk and raise money to fight AIDS and support people with HIV or AIDS! For more information, call 215-545-6868 or email aidsfund@critpath.org or wtp@critpath.org.
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