We asked Ronda Goldfein and Yolanda Lollis of the AIDS Law Project of Pennsylvania where activism could be most useful for their clients, both at the Federal and at state and local levels. They suggested the following. We added some comments in parentheses:
- Social Security disability determination for HIV. Today the side effects of antiretrovirals and other medications are not recognized as disabling conditions, however disabling they may actually be. Also, diabetes and hypertension need to be in the HIV listing as conditions that can cause disability.
- ADAP (AIDS Drug Assistance Program) formularies. Some do not include diabetes and hypertension medications.
- Prescription coverage for Medicare. This is a major national issue where the AIDS community needs to be heard. A great many clients of the AIDS Law Project are seriously affected (the drugs they need can cost $10,000 per year or more). They say, "I worked my whole life, and now I'm on disability and cannot get my drugs covered?"
- Syringe exchange. [We will look at this in a separate article.]
- Medicaid reimbursement. Payments to doctors are often completely inadequate, making it hard to find physicians who will take Medicaid patients, because they lose money treating them.
- Names reporting. Many people are uneasy about appearing on a government list of people with HIV, and as a result they avoid getting tested if their names must be reported. Unique-identifier systems avoid this problem, but are slightly more expensive to implement.
- Dental discrimination. In many places it is very hard to find a dentist who will treat anyone with HIV.
- Nursing homes. Many do not want to take people with HIV. When a nursing home is needed it is for a medical emergency, so patients, their families, and supporters are not in a good position to fight. And as people with AIDS live longer, they will need nursing home care for the usual problems of aging. (Providing good HIV-related care will be a medical challenge as well as a discrimination issue. But limiting people to HIV-specialty nursing homes would require most to be far from their friends and families. Perhaps communication technology such as computer conferencing, along with traveling HIV-specialist physicians, could enable more nursing homes to deliver routine HIV care at least.)
- Other HIV discrimination. Cases handled by the AIDS Law Project are "as varied as life itself."
Note: If you need assistance with an AIDS-related legal issue you may be able to get help from an AIDS legal services organization near you. To find out if there is one in your area, check The Directory of Legal Resources for People with AIDS and HIV, by the American Bar Association AIDS Coordination Project, phone 202-662-1025, or go to: http://www.abanet.org/irr/aidsproject/publications/aids-dir.html.
ISSN # 1052-4207
Copyright 2002 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.
Back to the AIDS Treatment News January 25, 2002 contents page.