Dear Editor:
As a participant in MACS (Multicenter AIDS Cohort Study) since its beginning in 1984, I was shocked to learn that the Howard Brown Health Center terminated Kate Lindsay as the project coordinator. The reason? She had allegedly "forwarded two complimentary [participants'] emails to her mother."
I consider myself a staunch defender of the privacy rights of the persons who volunteer for medical studies such as the MACS program. On the other hand, if Kate had forwarded a complimentary email of mine to the media, I would've gladly given her permission to do so. All of the participants in the MACS program, whether they wish to be identified as such or not, should be proud, as I am, of what we've done. Every six months (myself and many others for 28 years), we give 17 vials of our blood; submit to thorough, time-consuming and exhaustive physical and psychological examinations; and answer highly specific questions as to our sexual and drug-and-alcohol-taking activities.
Participating in the MACS study says nothing about the HIV status of the persons who do so. As I understand it, from discussions with the designers of the study (who are heroes to me), HIV-negative participants are required as "controls," in scientific terminology. Without them, the study would be useless. Even so, there is absolutely no more reason for HIV-positive persons to be ashamed of that aspect of their lives than there is for human beings to feel loss or disapproval because they are gay, lesbian, bisexual, transgender and/or queer.
The MACS study has answered many vital questions as to HIV and AIDS and led the way in reducing HIV infection from a "death sentence" to a serious but still-too-often fatal disease. Participation in it is the only worthwhile thing I've done in my life, but at least I've done that.
I know Kate's firingtogether with the recent death of her beloved predecessor, Marilyn Ursohas left other MACS participants in the same condition I'm in: with unstoppable tears in our eyes.
I don't wish to blame Jamal Edwards or any other persons at Howard Brown for what they've done. I've yet to connect with an employee at Howard Brown, including Mr. Edwards, who wasn't kind, caring and compassionate. I don't know what constraints Howard Brown faces under current privacy rules and regulations. I fervently wish, however, that Kate's alleged violations of the privacy guidelines (two emails to her mother!) had resulted in a reprimand and not her termination.
I don't know how to contact Kate personally, but I hope she knows that her termination has left my comrades and me devastated, and we will always love her.
Ron Fritsch
Chicago