THE FEDERAL RESPONSE TO THE AIDS EPIDEMIC: INFORMATION AND PUBLIC EDUCATION

MONDAY, MARCH 16, 1987

HOUSE OF REPRESENTATIVES,
HUMAN RESOURCES AND

INTERGOVERNMENTAL RELATIONS SUBCOMMITTEE

OF THE COMMITTEE ON GOVERNMENT OPERATIONS,

Washington, DC. The subcommittee met, pursuant to notice, at 10:03 a.m., in room 2154, Rayburn House Office Building, Hon. Ted Weiss (chairman of the subcommittee) presiding.

Present: Representatives Ted Weiss, Barney Frank, and James M. Inhofe.

Also present: James R. Gottlieb, staff director; Gwendolyn S. McFadden, secretary; Mary Kazmerzak, minority professional staff, Committee on Government Operations; and Linda A. Valleroy, Ph.D., congressional science fellow.

OPENING STATEMENT OF CHAIRMAN WEISS

Mr. WEISS. Good morning, The Human Resources and Intergovernmental Relations Subcommittee is now in session. We will be joined by other colleagues as the hearing proceeds.

Since 1981, the Public Health Service has reported almost 32,000 cases of AIDS in the United States. Unknown thousands suffer from pre-AIDS conditions. Medical experts believe that up to 2 million Americans are already infected with the AIDS virus.

Based on the current growth rate of the epidemic, more than 74,000 new cases will be diagnosed in the year 1991 alone.

These numbers only hint at the incredible suffering being endured by those struck down by the disease and by their families and friends and loved ones.

We have no vaccine to prevent the disease. Effective drugs for treatment are not yet in sight, although a few do show some promise. In light of these facts, it would be a grave mistake for the American people to relax and assume that researchers will find a cure for AIDS in the near future.

Public health officials tell us that the greatest hope for stemming the AIDS epidemic is an aggressive public health education campaign, greater than the United States has ever undertaken. Last fall, the National Academy of Sciences concurred, emphasizing that "The most effective measures for significantly reducing the spread

of... (AIDS) are education of the public and voluntary changes in behavior."

At about the same time the Surgeon General warned when releasing his excellent report on AIDS last October, "The need (for education) is critical and the price of neglect is high."

Today the subcommittee will hold its seventh public hearing on the Federal response to AIDS. In earlier hearings we have reviewed overall AIDS funding, discrimination, patient care, civil rights, testing and drug development, issues which remain extremely important. Today, we will focus on Federal efforts to devise and implement a massive public education campaign.

There are many dedicated Government Public Health Service people attempting to mount an effective education campaign. But, despite their urging for months, and in some case, for years, of specific education activities that are needed, they have been unable to get administration approval even for an overall AIDS information plan, which has been circulating for months.

In some cases, aggressive Federal activity has been stalled by bureaucratic and interdepartmental fighting, and in other cases, by controversies over the content of education materials being developed by Federal contractors.

Only after this hearing was announced a few weeks ago did a number of important projects finally begin to start moving at the Department. Some of these had been stalled for months, like a proposal to hire an ad agency to begin work on a media campaign. Even with this new initiative, it will probably be another full year before the mass media campaign begins.

One major stumbling block to Federal efforts is the continuing dispute over the content of school education material on AIDS. While I agree that school curriculum should be locally determined, the administration must not use this as an excuse to limit the information local school boards and parents have available to make those decisions. As the Surgeon General stated, "We can no longer afford to sidestep frank, open discussions about sexual practices. The National Academy of Sciences was forced to conclude last fall that "The present level of AIDS-related education is woefully inadequate. It must be vastly expanded and diversified."

Other countries with many fewer AIDS victims have undertaken some excellent education campaigns. These will hopefully become models for the United States.

Fortunately, many local organizations, and public and private officials have stepped in to fill the void in Federal efforts. Some of these, like the American Red Cross, have been supported by grants from the Public Health Service, but much, much more is needed.

Education, information and the practice of safe behavior are the only weapons we presently have to stop the spread of the epidemic, to lessen unnecessary fear and to cease discrimination against AIDS victims.

Until now, the Federal Government's information and education efforts appear to have been, at best, slow and inadequate. Today, we will attempt to learn why, and try to make sure that everything which can be done, is being done.

As we proceed and other members arrive, we will afford them the opportunity to make their opening statements.

We have a number of panels scheduled. Our first witness, panel one, will be Dr. David W. Fraser, who is president of Swarthmore College, a member of the Institute of Medicine, and a member of the Health Care and Public Health Panel of the National Academy of Sciences Committee on a National Strategy for AIDS.

Dr. Fraser, before we proceed, the tradition and practice of the subcommittees of the Government Operations Committee is to swear in the witnesses. Would you please raise your right hand.

Do you affirm that the testimony you are about to give will be the truth, the whole truth, and nothing but the truth? Let the record indicate that the witness answered in the affirmative.

Dr. Fraser, your entire statement, as prepared, will be entered into the record, without objection.

STATEMENT OF DAVID W. FRASER, M.D., PRESIDENT, SWARTHMORE COLLEGE, AND MEMBER, INSTITUTE OF MEDICINE, AND HEALTH CARE AND PUBLIC HEALTH PANEL OF THE NATIONAL ACADEMY OF SCIENCES COMMITTEE ON A NATIONAL STRATEGY FOR AIDS

Dr. FRASER. Next to the threat of nuclear war, AIDS is fast becoming the most important public health problem of the 20th century. That importance comes from three facts, that it is likely to kill 179,000 people in the United States alone by 1991, that it affects especially young adults and, increasingly, children, and that, although we have no effective drugs to treat it nor vaccine to prevent it, we do know how to prevent the spread of the virus that causes it.

Education is the one tool that we have for controlling the AIDS epidemic but up to now it has not been used with near the effectiveness that is called for. I shall try to lay out the case for a centrally coordinated, comprehensive educational program to halt the spread of HIV, the AIDS virus, via sexual transmission, through intravenous drug use and from mother to infant.

HIV is most commonly spread by sexual intercourse, specifically anal intercourse and vaginal intercourse. People who are intent on not catching HIV have several good strategies they can follow.

The surest is to remain in a monogamous relationship that has been so since 1977 or to abstain from anal or vaginal intercourse but these strategies are not practical for many people and the number for whom this advice is not helpful grows as each generation becomes sexually active.

For those people, using a condom during anal or vaginal intercourse is likely to be very effective. Barring a tear in the condom the HIV is most unlikely to be transmitted through it, and other activity during lovemaking, including kissing and oral-genital intercourse, does not seem to spread the virus.

For couples who become monogamous, the blood test for antibody for HIV may be very helpful in determining when it is safe to stop using a condom. If both partners are seronegative 6 months after entering into a monogamous relationship, they are on pretty solid ground to assume that condoms are no longer needed so long as

I should like to emphasize that I am not offering different advice for heterosexual and homosexual people here. All sexually active people are at risk. The risk of AIDS does not derive from sexual orientation but rather from particular sexual acts, number of partners, and precautions taken or not taken.

To date, educational efforts have clearly been insufficient except in a few special situations like the gay population of San Francisco where intense education has been associated with marked changes in sexual behavior.

One problem is the language used to educate. The Surgeon General has quite appropriately called for blunter, more explicit information about specific sexual acts and specific precautions but advice continues too often to be vague.

Warnings about "intimate sexual activity" or "exchange of bodily fluids" do not adequately differentiate between the potential riskiness of anal and vaginal intercourse and the apparent safety of, say, mutual masturbation.

We have heard welcome, open talk about condoms in recent weeks but the utility of condoms needs to be more widely known and their use encouraged and accepted.

The second most common way for HIV to spread is through the sharing of needles and syringes by intravenous drug users. Again, the mechanics of halting virus spread are simple.

If drug users would not share equipment, the virus in the blood would not be spread this way although spread from infected drug users to their sexual partners would still be a matter of concern.

Because of the complex psychological and social factors associated with intravenous drug use, simple dissemination of information is unlikely to be sufficient to curb spread of HIV in this population. Public health workers will need also to help addicts get off drugs, to assist them into more stable personal situations, and to help them take more responsibility for their actions.

A great expansion of methadone maintenance programs may be an essential companion to education of drug users about AIDS.

The third biggest educational need has to do with the risk of transmission of HIV from mother to her infant or fetus. Over 300 cases of AIDS have been reported in children, half of them under 1 year of age. Most of the infants are born to mothers who are intravenous drug users themselves, are sexual partners of drug users or bisexual men or are from countries where the prevalence of HIV infection is higher in women than it now is in the United States. But as heterosexual spread of HIV becomes more common, the number of women of childbearing age who are infected and could in turn pass HIV on to their children will increase.

We must develop educational programs to identify women at high risk of HIV infection and, in conjunction with serologic testing as indicated, counsel them about the risks to them and their children and alternatives open to them such as birth control or abortion.

In focusing on these three groups in need of education, I do not mean to indicate that education is not needed elsewhere. Myths about AIDS need to be dispelled so that people who are infected are not treated inhumanely at work or at school by people who think erroneously that they might transmit the virus by such daily

activities as shaking hands, sneezing, coughing or sharing of utensils or even by embracing and kissing.

But the emphasis must be on educating people about ways they can stop HIV transmission through sex, by sharing IV drug paraphernalia and from mother to child.

I understand that the Centers for Disease Control has been given a mandate to oversee a national educational program about AIDS. Concentrating responsibility in that way will be essential for mounting an effective program but five other elements will also be necessary.

First, model programs for education and control must be developed for use in the States and the money must be provided for putting these model programs in place.

Second, counseling of people at high risk in conjunction with confidential serologic testing is critical. This will require great expansion of counseling and voluntary testing in such places as clinics for sexually transmitted diseases, IV drug use, and prenatal care. Third, private physicians must be mobilized to serve as counselors and educators for all of their patients at risk of AIDS. Professional medical organizations, like the American Medical Association and the American Academy of Pediatrics, and State medical societies should be leaders in encouraging and focusing the work of private physicians to alert their patients to the danger and to help them make responsible choices.

Fourth, special attention must be paid to AIDS education for young people from junior high school on. By taking the initiative in developing models for AIDS education in schools and then providing funds and encouragement for putting them in place, the Federal Government would indicate how important it is that AIDS education be universal, be frank and begin early.

Fifth, advertising must be used more than it has been. Prime time television offers an important opportunity to reach a large portion of the U.S. population with detailed information about AIDS risk and practical preventive measures. The networks should be willing to contribute substantially to this effort as part of their public trust. Direct mailings, local radio spots and billboards can also be used imaginatively.

In summary, AIDS education should be pursued with a sense of urgency and a level of funding that is appropriate for a life-ordeath situation. The total budget for AIDS education and public health measures from governmental and private sources combined should approximate $1 billion by 1990.

This represents per capita expenditure equal to that provided by the State of California for San Francisco in 1986. If we are to slow the spread of HIV, we must be ready to educate the entire U.S. population with the intensity that to date has been reserved for selected high-risk groups.

With a disease that has as long an incubation period as AIDS, we cannot afford to initiate intensive and sustained control measures, which means education, only after the disease becomes rampant everywhere.