Aerosol Pentamidine: The Need For Advocacy

Ryan White, diagnosed with AIDS three years ago at age 13, has become well known to the nation through media coverage of his situation. White, exposed to AIDS through a hemophilia treatment, was banned from the local school and forced by prejudice to move from Kokomo, Indiana to Arcadia, Indiana, where he and his family found acceptance. Three years ago, doctors predicted he had six months to live.
In January 1988 Ryan White was hospitalized for a recurrence of pneumocystis. Michael Callen, co-founder of the
People With AIDS Coalition in New York, called White's family to make sure they knew about aerosol pentamidine. It turned out that the family had not been told about that treatment, or any other preventive for pneumocystis.
Callen sent a packet of information for the physician. Ryan White is now using aerosol pentamidine and doing well.
It surprises us that even in so well known a case, the family was not told about the option of pneumocystis
prophylaxis. While not formally approved by the FDA--due to research delays like those cited above--prophylaxis by aerosol pentamidine or other treatments has become the standard of care of experienced AIDS physicians. An editorial in the New England Journal of Medicine (October 15, 1987) recommended it for those at risk for pneumocystis.
Note: Michael Callen, a well-known singer as well as AIDS activist, was diagnosed six years ago and not expected to live past 1984. He is very much alive and just released his first solo album, Purple Heart, a collection of songs about being gay in the age of AIDS. Purple Heart is available through Significant Other Records, P.O. Box 1545, Canal Street Station, New York, NY 10013.

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