PML TREATMENT SURVEY

Last year AIDS TREATMENT NEWS (issues #79 & #88) reported the efforts of two activists in Los Angeles to compile a list of possible treatments for a serious AIDS-related viral infection called progressive multifocal leukoencephalopathy (PML). Lisa Muller and Peter Brosnan have sent this list, with periodic updates, to many interested people, and now they are circulating a "PML survey" to collect anecdotal data regarding the effectiveness of various treatments.

Peter described some early results of the survey, results which verify what they suspected: "PML is frequently misdiagnosed as Toxo or other central nervous system disorders. Valuable treatment time is thereby lost. Moreover, the actual incidence of PML is, we suspect, vastly underreported and underestimated. Treatment can work -- those people who have received early, aggressive treatment are, in many cases, doing very well. Those people who were sent home to die have done as they were told. We continue hearing good things about both NAC and heparin in the treatment of PML. NAC, especially, seems useful. We have also learned that intrathecal interferon is being tested, but the M. D. 's running the study refuse to comment."

Anyone who has PML treatment experience to share can ask for a blank survey by writing Lisa Muller, 3031 Angus St., Los
Angeles, CA 90039. Of course, the PML treatment report is still available by sending a request to the same address, or for urgency's sake, by calling 213/666-0751. A donation of $15 helps to pay for copying and express mailings. We commend Lisa and Peter for their ground-breaking work on an infection which has been widely, and wrongly, considered to be untreatable.