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Federal AIDS Policy Emergencies

June 27, 2003

A note from The field of medicine is constantly evolving. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!

Members of ACT UP Philadelphia have begun to track the numerous federal cutbacks and policy changes affecting U.S. AIDS services and are assembling a list in a single document. Crucial programs such as Social Security disability, ADAP, Medicare, HIV prevention, and biomedical research are all currently under fire.

We are preparing lists of organizations that publish quality action alerts on these issues, and would appreciate recommendations.

ADAP (AIDS Drug Assistance Program)

Fifteen states including New York have instituted waiting lists or other access restrictions; six others are expected to implement restrictions soon. Activists estimate that at least 12,000 people with HIV who need this program cannot access it this year -- in many instances this means that people who need HIV treatment will not be getting it at all. Unless Congress passes an emergency-spending bill for the ADAP, the situation will only grow worse until March 31, 2005. See AIDS Treatment Data Network for more information.

New Social Security Disability Definition: Public Comments Deadline July 8

The definition of who is "disabled" due to HIV infection was last revised in 1993, and is being updated to reflect modern treatment. You can see the proposed definition (and submit public comments) by visiting:

You can also read comments already submitted by others.

[Note: If this link does not work, try visiting, then click on Connect Board, then click on Listings, then scroll down to Immune System listings.]

Lambda Legal has asked doctors and lawyers experienced with HIV to sign on to its 18-page letter to the Social Security Administration; others can refer to this letter in their public comments (refer to the "HIV-Legal Joint Comments"). The letter suggests changes to the proposed new rules, for example:

  • to give examiners guidance on the side effects of medications,
  • to not require certain laboratory tests no longer commonly used,
  • to accurately reflect the consequences of co-infection with hepatitis C,
  • to tell examiners that lifestyle and adherence are not necessarily to blame if an antiretroviral regimen fails,
  • to include CNS lymphoma in the lymphoma listings,
  • to include herpes zoster, CD4 count under 100, and several other conditions, and
  • to acknowledge that treatment now exists for several opportunistic conditions that were untreatable in 1993, so they should be considered disabling only if treatment fails.

For more information contact attorney Hayley Gorenberg at Lambda Legal, 212-809-8585 or

We have heard from others that the disability revision is a legitimate effort to update the rules for modern conditions -- but raises broader concerns. One problem is that government works through lists of diagnoses, and tries to save money. But what we most hear from individuals is that they can work either part time or full time, but do not know how long that will continue. They need to be able to go back to work without losing their benefits, and then being destitute and without medical care if they lose their job.

Another problem is that the new rules may give officials many more occasions to call people in for hearings that can revoke their benefits. Such procedures have been abused in the past to remove people who are clearly disabled, just to save money. Also, a large increase in hearings and revocations would complicate financial and medical planning, which can be very difficult already.


Medicaid provides healthcare, including prescription drugs, for low-income, elderly, and disabled people including about 260,000 people with AIDS. The largest federally funded healthcare program for people with AIDS, it is also typically the second largest state budget item after education. But the depressed U.S. economy has reduced tax revenues and many states are running huge deficits.

In response, dozens of states are attempting to save money by lowering the maximum personal income allowed for eligibility, dropping hundreds of thousands of "optionals" (people who meet slightly relaxed eligibility requirements) from Medicaid rolls, reducing access to prescription drugs, and eliminating access to nursing home care and other services. In Texas, for example, disabled patients cannot earn more than $552 per month to qualify for the program. In South Carolina, the governor is planning to reduce the maximum number of prescriptions per month from 4 to 3. In California, the governor attempted to de-fund hospice care this year until aggressive public policy advocacy by the hospice community restored the money. Many states have instituted highly restrictive Medicaid drug formularies, effectively putting expensive drugs out of reach for many people with AIDS.

Advocates succeeded in pushing Congress to disburse $10 million directly to Medicaid through a temporary increase in the Federal Medical Assistance Percentage, but that is a small part of the shortfall.

In addition, President Bush is aggressively advocating for a plan that would limit federal contributions to the program regardless of a state's costs. Such a plan would encourage states to further reduce benefits and establish obstacles to patient care in the interests of cost containment. A state-by-state list of Medicaid cuts is available from TIICANN at 202-588-1775, or by emailing Tom McCormack: Families USA has information on both Medicaid and Medicare,


Medicare provides health care (but not prescription medications) for many people with AIDS. Prescription coverage plans that have been approved by Congress will not be fully implemented until 2006 and will require recipients to spend $3,500 (in the House version) to $3,700 (in the Senate version) out of pocket before catastrophic coverage kicks in (either 90% in the Senate version or 100% in the House version). (People with incomes of $60,000 or higher would have to pay more out of pocket before catastrophic coverage takes effect.) U.S. drug regimen costs for people with AIDS start at about $10,000 and can total $30,000 or more per year. In states where the AIDS Drug Assistance Program is weak and patients do not also qualify for Medicaid, these costs will mean that people with AIDS cannot afford their medications. A compromise between the House and Senate versions of the bill is expected to be reached in conference committee later this summer.

Families USA offers important updates on Medicare: The Kaiser Family Foundation also has an important information source on Medicare:


The U.S. Centers for Disease Control (CDC) instituted far-reaching changes to its prevention policy and funding priorities in April 2003 in an effort to remove barriers to testing and care. Programs to test more people, get those who are HIV-positive into treatment and care, and help them prevent transmission to others are widely supported.

Unfortunately the CDC will greatly reduce or discontinue funding support groups, safe sex workshops, and other programs to help those who are high risk and HIV-negative protect themselves. Organizations that provide primary prevention, including many groups that target people of color, will get much less funding under this plan.

The CDC now promotes widespread, routine testing in doctors' offices, prisons, and among pregnant women -- but will no longer promote specialized counseling for those who are tested. And while this testing will find more people who test positive, the agency has not allocated more money for counseling and care.

The CDC has also changed its practices under pressure from conservative critics who do not like gay-friendly AIDS organizations. Last fall, the CDC audited several groups that participated in a protest against HHS Secretary Tommy Thompson at the 2002 Barcelona International AIDS Conference. The CDC cited federal funding of the groups to justify the audits, but many activists saw them as retribution for the protest. New York's Gay Men's Health Crisis and the African Services Committee were among those audited.

The CDC is also cracking down on AIDS organizations that use sexually explicit materials, and on June 13, 2003 sent a letter to San Francisco's 19-year-old Stop AIDS Project accusing the group of breaking a federal law that prevents federally-funded organizations from encouraging or promoting sexual activity. Ironically, the organization had recently passed audits (also a result of pressure from right-wing conservatives) by the Office of the Inspector General and the CDC. The audits determined that Stop AIDS programs were adequately supervised by the San Francisco Health Department and were in keeping with community standards.

Conservatives are also influencing scientific research at the CDC: research grant applicants are now discouraged from using standard terms to describe the populations and behaviors they plan to study (men who have sex with men, anal sex, etc.).

Serious Cut in Basic Biomedical Research

In a last-moment bureaucratic move, the Bush Administration's Office of Management and the Budget (OMB) ordered the National Institute of Allergy and Infectious Diseases (NIAID) to spend $233 million on a bulk purchase of anthrax vaccine. The result is that over $200 million must be taken away from basic research in HIV, other infectious diseases, and immunology. Congress had not appropriated funds for the vaccine purchase, apparently because it thought that this money should not come from the NIAID research budget but from other government channels, and the Administration had not requested the money in those budgets.

Even without the diversion, only about 25% of NIAID grants judged scientifically worthy would have been funded. With $233 million taken out, only 18% will be funded. No one knows ahead of time which of the projects may turn out to be critically important.

The pharmaceutical industry does very little basic medical research because of lack of commercial incentive. Instead, it relies on the Federal government to fund researchers at universities and other institutions. As a result, the studies rejected due to the diversion of funds will be delayed or not done.

Nature, considered by many to be the world's most prestigious scientific journal, called this case "a prime example of how centralized control could undercut the NIH's mission of protecting the health of the United States and the world" ("Biodefence Takes Its Toll," Nature, June 5, 2003, issue #423).

ISSN # 1052-4207

Copyright 2003 by John S. James. Permission granted for noncommercial reproduction, provided that our address and phone number are included if more than short quotations are used.

A note from The field of medicine is constantly evolving. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!

This article was provided by AIDS Treatment News. It is a part of the publication AIDS Treatment News.
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