Federal Policy: Ryan White, OAR, Testing Newborns

With the recent budget compromise between the White House and Congress (the omnibus budget agreement, which is for fiscal year 1996, which ends in five months), AIDS advocacy groups won four of the five issues on the table in this budget negotiations:

* Increased funding for the Ryan White CARE Act. The AIDS Drug Assistance Program (which helps individuals with limited incomes pay for certain prescription drugs) received an increase of $52 million, as had been expected. In addition, there was an unexpected increase of $30 million for the Ryan White program overall, due to the work of AIDS advocates and of the White House.

* Repeal of the HIV military discharge. The budget compromise repeals the law introduced by Congressman Robert Dornan (Republican, California) which would have required the military to discharge over a thousand service men and women with HIV.

* Saving the AIDS Education and Training Centers. This program will be cut, but not eliminated, as had been feared.

* Saving Housing Opportunities for People with AIDS (HOPWA). This program is flat funded (neither increased nor decreased) for fiscal 1996 -- which is better than had been expected.

Negotiations for fiscal 1997 (which begins October 1, 1996) are already well underway. It is important that the concerned public understands the outline of the major AIDS issues involved, so that we can provide grassroots support for our lobbying organizations when necessary.

The OAR Budget Issue

The issue which AIDS groups lost in the budget negotiation was the consolidated budget authority for the OAR (Office of AIDS Research) -- authority which the OAR has had for more than two years. Almost all AIDS organizations involved in this issue strongly support letting the OAR keep this authority, and will be pushing hard to restore it for fiscal 1997.

A central argument for OAR budget authority is that while other major diseases have their own Institutes at the National Institutes of Health (e.g., the National Cancer Institute), a separate AIDS Institute is not possible right now, and might not be best anyway, because AIDS is related to so many branches of medicine that AIDS research can best take place within the other Institutes, as it already does. Instead, the OAR with budget authority constitutes an "Institute without walls," allowing AIDS research to be coordinated and made more efficient. Without budget authority, each separate Institute will be its own fiefdom, leading to the kinds of inefficiencies and lost opportunities which occurred during the first decade of AIDS research.

One AIDS treatment organization involved in the issue, Project Inform, has raised other concerns. It sees the issue of OAR budgetary authority as largely symbolic, since either way the NIH director will ultimately make the key decisions, using plans worked out by the OAR and the Institutes. In neither case can the OAR or the Institutes act independently; in both cases, compromise and consensus, not OAR's budget authority, will determine what happens. But Martin Delaney of Project Inform fears that one cost of OAR budget authority is that every year's AIDS research funding will have to be debated with the whole Congress, not just within NIH. Project Inform is not opposing the OAR consolidated budget, but wants more examination of the entire issue -- including the possibility of an AIDS Institute.

Mandatory Testing of Newborns -- Comment

On a separate issue (not decided as part of the omnibus budget negotiations), Congress is likely to require that states with over 10% of the nation's pediatric AIDS cases begin mandatory HIV testing of newborns in two years, unless each state can first meet certain standards through voluntary testing programs. Since the standards proposed appear unrealistic, this legislation will probably require states to begin mandatory testing of newborns -- or sacrifice Ryan White Title II AIDS funding, the penalty for not doing such testing. (Antibody testing of newborns reveals the mother's HIV infection, not the baby's -- and is too late to help prevent transmission of HIV to the baby.)

Language in the legislation requires counseling for pregnant women and voluntary HIV testing, measures long advocated by AIDS and public health groups as the best approach for reducing perinatal infection. But in the same provision, Congress undermines this approach by mandating newborn testing when it is too late to prevent infection.

The most effective way to prevent mother-to-infant transmission would include appropriate prenatal care so that women can use the test results effectively. Most pregnant women with HIV are poor and unlikely to be insured. They may not be able to get the care they need to reduce the chance of transmitting HIV to their children. They may be subject to violence if they test positive and that becomes known. Testing is necessary, but it should be part of a comprehensive program in cooperation with the mother, not imposed on her by Congress regardless of her concerns and her situation.

The real issue is money. It costs money to provide medical care for poor women before, during, and after birth. But it costs nothing for Congress to feel like it is doing something about pediatric AIDS by requiring mandatory testing. This empty gesture will be at the expense of states, which will probably have to cut other AIDS or health programs to comply.