February / March #12 : Putting the P in PML - by Chris Petrikin

POZ - Health, Life and HIV
Subscribe to:
POZ magazine
Newsletters
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr MySpace
POZ Personals
Sign In / Join
Username:
Password:

Back to home » Archives » POZ Magazine issues




Table of Contents

Where There's Smoke There Must Be Fire

Trials by Fire

Let the Seller Beware

Putting the P in PML

Ship to Shore

Jackie O Contraire

Over Disclosure

Bureaucracy

Cuisinart for Art's Sake

Needing the Doe

Waste Management

Sleeping AIDS

S.O.S.

Casey's Pop Life: Living for Today

Sleeping AIDS

The Lady Doth Protest

Bobbing with Bill

Shelf Life

Don't Speak

Web Crawler: Marty Howard

Squash Your Bug

Chopped Liver

Strife Insurance



Most Popular Lessons

The HIV Life Cycle

Shingles

Herpes Simplex Virus

Syphilis & Neurosyphilis

Treatments for Opportunistic Infections (OIs)

What is AIDS & HIV?

Hepatitis & HIV


email print

February / March 1996

Putting the P in PML

by Chris Petrikin

Sixties activist Peter Brosnan refuses to take "no treatment" for an answer

I was standing in a Jewish deli in West Hollywood, days before Chanukah, looking for Jesus. Instead I found a somewhat disheveled conspiracy theorist who juggles his time between screenwriting, documentary filmmaking, counseling and researching progressive multifocal leukoencephalopathy (PML).

When we set up the interview earlier in the week, Peter Brosnan told me to meet him at Canter's deli and "just look for the guy with long hair and a beard who looks like Jesus.'' While he wasn't quite what I had pictured the Messiah to look like, he was nonetheless easy to spot among the mostly senior patrons: He wore a peace-sign t-shirt and seemed to have all of his original teeth.

When not attempting to write the great American screenplay, counsel developmentally disabled adults or dredge up support for his documentary about the buried ruins of Cecil B. DeMille's 1923 set for The Ten Commandments, Brosnan can be found compiling and updating information for his self-published research guide, PML: Case Studies and Potential Treatments. The compilation offers some of the most conclusive and wide-ranging information on PML, a neurological disease that -- even after making headlines as the cause of death for Pedro Zamora, AIDS activist and star of MTV's The Real World 3 -- continues to be among the most underresearched and misdiagnosed in the AIDS arsenal. The laboriously researched report stems from the frustration Brosnan and his ex-wife, Lisa, felt in 1988 when her 22-year old brother was diagnosed with PML.

"His doctor told us there wasn't any treatment available for this,'' says Brosnan. "He said because the deterioration was so rapid, there was nothing they could do.''

A product of the activism of the late '60s and early '70s, the 43-year-old Brosnan refused to take the word of the medical establishment as gospel. He and Lisa called every AIDS doctor, hotline and service organization they could find, but the response was hardly different from that of the doctors treating Lisa's brother. Whenever they told people that he had PML, the response was usually confused stammering because people had never heard of the disease or, if they had heard of it, their silence was followed by the nervous clucking of futility. Her brother died six weeks after his diagnosis.

"Even after we got some encouraging information that ara-C, a cancer drug, had been helpful with some PML patients,'' said Brosnan, "the doctors refused to use it, because the FDA [Food and Drug Administration] hadn't approved it for PML use. Well, at that time, and even today, no drug has been specifically approved by the FDA for treatment of PML. By the time we convinced him to use it, it was too late.''

The couple compiled the material they had gathered before Lisa's brother's death and supplemented it with further information and case studies. The resulting report, now in its third edition, contains case studies, surveys of people with PML, a resource section and dozens of articles and abstracts -- from the obvious to the arcane -- taken from medical literature and AIDS newsletters.

While the material is clinical in nature, there's no sterility in Brosnan's challenge in his forward to the book. "If your doctors tell you that there are no PML treatments and no survivors, show them this report and the attached articles. If they still won't offer you any hope, or if they refuse to try something, you then have two options: You can get ready to die a relatively fast and painless death or you can get another doctor. Quickly.''

In Los Angeles, where screenwriters are outnumbered only by therapists, Brosnan stands out for what has become a crusade to inform the AIDS community and the medical establishment about PML.

"A recent European study of autopsies found PML in the brains of 18 percent of people who had died of AIDS,'' says Brosnan. "If this number is correct -- even if you cut it in half -- PML is in the top ranks of AIDS diseases. And it remains severely underdiagnosed. In fact, the [Centers for Disease Control] says it strikes only one percent of PWAs.''

"Because some of its symptoms -- blurred vision, loss of balance and numbness -- are attributable to other illnesses, it's still a process getting PML diagnosed correctly,'' adds Brosnan. "But, while the odds are you still may be diagnosed with toxoplasmosis, most people with PML probably would be diagnosed correctly today.''

Brosnan and Lisa divorced in 1993 and do not maintain contact, but he has continued to update the research guide, print copies and distribute it at his own expense from his LA home. Brosnan soon hopes to update the report with a survey of several hundred people surviving with PML.

How does Brosnan maintain his fervor for AIDS activism? The answer can be found on the infamous grassy knoll in Dallas, right along with the answers to John F. Kennedy's assassination.

"When I was in college, I had a three-part radio show that examined the link between the JFK assassination and Watergate,'' Brosnan says. "And I was also involved in political activism and saw the similarities between the gay movement and what and who we were fighting for and against.''

So Brosnan, employing the necessary traits of both counselor and activist -- his reassuring demeanor belying an assertive activist -- is after all a pragmatist. But he recognizes the need for increased cooperation between the AIDS and medical communities as well as pharmaceutical companies and federal agencies for help in funding and developing medications for people with PML. And hopefully, then, doctors will take note. He says it's already begun to come full circle as a doctor in the same hospital that his ex-wife's brother died in, called to ask for information on treating PML with ara-C.

"So I like to believe that crazy impossible things can happen: That the people who killed JFK will get caught and that people with AIDS can get better.''




[Go to top]

Facebook Twitter Google+ MySpace YouTube Tumblr Flickr Instagram
Quick Links
Current Issue

HIV Testing
Safer Sex
Find a Date
Newly Diagnosed
HIV 101
Disclosing Your Status
Starting Treatment
Help Paying for Meds
Search for the Cure
POZ Stories
POZ Opinion
POZ Exclusives
Read the Blogs
Visit the Forums
Job Listings
Events Calendar
POZ on Twitter

Ask POZ Pharmacist

Talk to Us
Poll
Are you buying holiday gifts that raise HIV/AIDS awareness?
Yes
No

Survey
Smoke Signals

more surveys
Contact Us
We welcome your comments!
[ about Smart + Strong | about POZ | POZ advisory board | partner links | advertising policy | advertise/contact us | site map]
© 2014 Smart + Strong. All Rights Reserved. Terms of use and Your privacy.
Smart + Strong® is a registered trademark of CDM Publishing, LLC.