By NORA NEWMAN JURGENS

AIDS: public safety v. rights of victims

A 25-member advisory council on AIDS, formed by Gov. James R. Thompson in November 1985, issued a preliminary report April 16. It concluded that the solution to the AIDS epidemic in Illinois lies with aggressive education and prevention programs. The report was released with the intention of alerting the members of the General Assembly that an effective campaign would involve legislative action. At press time, May 28, the Senate had passed a bill sponsored by council member Sen. William A. Marovitz (D-3. Chicago) incorporating the council's recommendations concerning the right to anonymity of persons seeking testing for the disease and information about the nature of the test.

AIDS (acquired immune deficiency syndrome) poses the greatest public health challenge to Illinois in this century. A balance between the safety of the public and the rights of AIDS victims will have to be struck.

AIDS is the "epidemic of choice," according to Renslow Sherer, chairman of the governor's AIDS Interdisciplinary Advisory Council (IAIAC); 442 AIDS victims have been diagnosed in the state so far this year, with another 4,000 persons suffering from the so-called AIDS-related complex (ARC). With the number of cases doubling every 10 months, there will be approximately 3,500 AIDS cases and 35,000 ARC victims in three years, according to the report. By 1990 the incidence of AIDS will have increased to 14,000, with 7,000 victims still living and needing care.

The disease is most prevalent among homosexual men and intravenous (IV) drug users, the report said. While education campaigns in the gay community have resulted in some modifications of behavior, IV drug users are more difficult to reach. In New York, Sherer said, IV users constitute 50 percent of AIDS cases, and they could become the "second wave" in Illinois. It is believed that IV drug users may be the primary source for transmission of the disease to infants and heterosexuals. But modifying a drug user's behavior means treating the addiction, which in itself is difficult, Sherer pointed out.

As far as can be determined, the disease is transmitted through direct blood to blood contact and through sexual intercourse. "It is well established that the disease is not spread by casual contact," the report said. Studies of family members who live with AIDS victims have found no documented cases of transmission of the virus. AIDS is believed to be caused by a virus that attacks the body's immune system, leaving it open to infections. The time between contracting the disease and the appearance of symptoms can be two to five years or more, which makes the disease that much more difficult to control, according to Sherer.

There is currently no known cure and no vaccine. The council believes, however, that through "aggressive education leading toward behavior change on the part of individuals and careful screening of the blood supply" the chain of transmission can be broken. There is also an increasing need for patient care services. AIDS and ARC victims are often denied nursing home care, or home care services, because of an "inappropriate fear" of AIDS. Subsequently, millions of dollars must be spent on hospital care as the only alternative. There are also the social consequences of "isolation and abandonment," resulting in increasing mental health problems for victims, those at risk and their families and friends. It has become an "epidemic of fear," Sherer said.

Such testing is essential in combating
AIDS because the most contagious period of the disease
occurs before symptoms develop

In addition to the difficulties of dealing with the disease itself, the report describes numerous misconceptions about the test for AIDS. Called the ELISA test, it only measures the presence of AIDS antibodies. It does not determine if a person who has been exposed will develop AIDS, or if that person is infectious. Approximately 10 percent of those exposed to the virus develop the disease, meaning that the test has serious limitations and can result in a "leper effect" for anyone tested or associated with an AIDS victim, or who suffers from ARC. The test should only be administered after the person has given written consent with full knowledge of the test's limitations, the report said.

Information confidential

The Illinois Department of Public Health (IDPH) has funded 14 sites in Illinois where members of high risk groups may be tested and receive counseling. The IAIAC stressed that patients must be assured of total anonymity. There can be no forced disclosure.

Such testing is essential in combating AIDS because the most contagious period of the disease occurs before symptoms develop. There may no longer be an active virus in a diagnosed AIDS patient, according to Ronald Shansky, medical director for the Illinois Department of Corrections and chair of the council's institutions and caretakers working group. The majority of persons exposed to the virus never contract AIDS, but they may remain infected, and infectious, for years, the report said. Anonymity is equally essential since mandatory testing and reporting of contacts would result in "driving the disease underground." Any measure that impairs the ability to follow the disease will affect public health, according to Sherer.

Council member Harvey Grossman of the American Civil Liberties Union (ACLU), said that the collection of information about the disease and those tested must be kept strictly confidential, and that no lists should be kept of people who seek testing or of their contacts. "The greater public health is at stake here," he said. "We need people to come in freely." A person who has been shown to have been exposed to the AIDS virus would be asked for names of persons he or she may have had contact with, Grossman said, but that list should be destroyed after three months in order to protect all the people concerned. Grossman pointed out that Bernard Turnock, head of the Illinois Department of Public Health, has said there is no need to keep a list of names of those persons who have sought help because there is no treatment for the disease.

July 1986/Illinois Issues/13

Comprehensive effort

Other IAIAC recommendations include: a continued, careful monitoring of the blood supply; access for AIDS and ARC victims to needed medical and mental health services, including the establishment of specialized services where needed; local networks to develop prevention and treatment plans; and support for basic research on AIDS to develop a cure, treatment and improved prevention. The council stressed that a comprehensive AIDS education program must be introduced in Illinois schools this fall. It also called for the education and training of health care and institutional providers in basic AIDS information, patient care and treatment, prevention of transmission and proper infection control procedures. The council recommended the establishment of a statewide AIDS activity office and an independent AIDS Council to continue IAIAC functions.

Much activity is already taking place. In Chicago, where 90 percent of AIDS cases in Illinois are located, the Chicago AIDS Task Force (CATF) was organized in 1982 to bring together individuals and groups working on AIDS issues. IDPH has established prevention and monitoring programs, including a tollfree AIDS hotline (1-800-243-2437). Several local task forces have also been formed around the state. In addition, all donated blood is tested for the presence of AIDS antibodies, and members of high risk groups are urged not to donate blood.

Policy accommodation

The council's recommendations have been incorporated in legislation sponsored by council members Sen. William A. Marovitz (D-3, Chicago) and Rep. Jesse C. White Jr. (D-8, Chicago). Rep. Sam Vinson (R-90, Clinton), who also served on the council, was the only dissenting voice. He issued a minority report calling for more stringent reporting requirements and more punitive measures against anyone who has been found to have been exposed to AIDS and who refuses to alter his or her life style.

Vinson believes that, because of the long incubation period, the actual number of people who may have been exposed to the AIDS virus may be greater than the number shown in official statistics. Vinson believes that the public health threat of AIDS and the high cost of caring for its victims calls for a "realistic and effective public health plan to control the contagion."

While he agreed with the council's recommendations for stopping the spread of AIDS by tightening up medical procedures, Vinson believes that the council report places patient advocacy above public health protection, focusing too much on the rights of AIDS victims.

Vinson said that the council failed to deal with the problem of transmission of the disease by prostitutes. He believes that a judge should have the authority to order mandatory testing for an individual charged with prostitution where there is "reasonable cause" to believe that that person has AIDS. Further, Vinson believes that if a prostitute is diagnosed as having AIDS and "insists on continuing her illicit conduct," the court should be able to "isolate" the prostitute so that she cannot transmit the virus.

Vinson accused the council of a "Dr. [Benjamin] Spock-like permissivism" in its recommendation that contact identification be voluntary. He advocates the mandatory reporting of contacts when an individual tests positive for AIDS (as is done with venereal diseases) but with strict confidentiality. Confidentiality would be enforced through threats of job loss and criminal sanctions against those who administer the tests, Vinson said. Those who test positively for AIDS but refuse to report on contacts should also be subject to sanctions, either through a judicial contempt procedure or criminal penalties, Vinson believes.

The council's reliance on public education campaigns, particularly in schools, is "extraordinarily unrealistic" if it believes the General Assembly will fund "frank and explicit" programs about safe homosexual sex in public grade schools, Vinson said. Sherer said that any education program would be developed with the cooperation of the State Board of Education and parent-teacher groups, with the goal being to prevent the "hysteria and fear" of AIDS that has arisen in other states.

Vinson said that the council's call for informed consent when a person is tested for AIDS, which would specifically emphasize the defects of the test, overlooks the fact that, when combined with further testing, the ELISA test is the only early way to alert a potential victims that he may be infectious and needs to change his behavior. The council's position that a doctor should not inform a patient that he has been exposed to the AIDS virus until after several tests means that "a potential victim may blindly continue behavior which possibly may infect others." according to Vinson.

Vinson said that counseling at each step of the testing process should urge the patient to "abstain from behavior that might infect another." He also takes the council to task for advocating policies of nondiscrimination against AIDS victims, particularly in the area of long-term care. Vinson points out that nursing homes are structured to care for those who cannot care for themselves, and that prohibiting a nursing home from refusing admission to an AIDS patient could "destabilize the atmosphere of every nursing home in the state. Rampant rumors about every new patient admitted can be expected." He also pointed out the danger of exposing elderly patients to the numerous contagious infections that attack AIDS victims. He suggests instead the development of long-term care facilities specifically for AIDS patients.

Vinson concludes by pointing out that in 4 to 6 percent of all AIDS cases the manner in which the disease was contracted cannot be explained. While it is possible that most of these cases could be due to denial by patients of a particular life style (whether it be homosexuality, IV drug use or prostitution), Vinson believes that the state's public health policy should err on the side of caution and be "premised on a healthy respect for the unknown. Perhaps casual contact will in fact prove to be a factor in some of the unexplained cases."

The highly emotional issues surrounding the AIDS epidemic have made the work of the IAIAC difficult, council members said. In an attempt to protect the rights of victims as well as the public health, their goal is to educate everyone, from physicians to school children. According to Sen. Marovitz their efforts will have to include the education of lawmakers as well.

14/July 1986/Illinois Issues