June #113 : Read It Or Weep - by Allen Huff

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Table of Contents

Fighting Femmes

The amfAR's new clothes

Warm Reception

White Smoke In Our Eyes

Hepatitis on the Block

High On Adherence

A Positive Campaign

Founder's Letter

Earthwatch: Generic Meds

On The March!



POZ Picks Gay Pride

Medi - Mess

How to Treat "Untreatable" HIV

Read It Or Weep

Live and Let Die?

Did Common Just Come Out?

Legal Eye

Quick Study


Book nook


When Push Comes To Drag

Most Popular Lessons

The HIV Life Cycle


Herpes Simplex Virus

Syphilis & Neurosyphilis

Treatments for Opportunistic Infections (OIs)

What is AIDS & HIV?

Hepatitis & HIV

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June 2005

Read It Or Weep

by Allen Huff

Ignore those fine-print drug package inserts at your own risk.

In 2004, while helping out at the Democratic National Convention, I was introduced to former secretary of state Madeleine Albright. Impressed, I reached out to shake her hand—and almost found myself with a handful of her right breast.

This was no wardrobe-malfunction moment: For more than five years, I had suffered mysterious vision loss, groping for causes with six New York and LA ophthalmologists. The verdicts ranged from “getting older” to “degenerative eye disease inherited from your mother’s family.” Finally, a specialist at UCLA named one of my HIV meds, the nuke Videx (ddI), as the culprit. Had my doctor or I bothered to read the tiny print on the Videx Patient Information Insert, I might still be able to…well, read the tiny print. Today, Videx inserts warn users to have periodic retinal exams.

I first took Videx after my AIDS diagnosis in 1996, continuing on and off for four years. The med nauseated me, yet I needed it to control a high viral load and low T-cell count. In the summer of 2001, after a bout of acute pancreatitis, I bid Videx a final adieu.

Too late: It had already eaten away at receptor cells in the back of my eyes, leaving holes in my vision. This cannot be reversed, and I am now legally blind.

In hindsight, I could also have found this rare Videx side effect—and reported my own case—at MedWatch, a free, confidential and voluntary system for doctors, nurses and patients to report adverse med reactions directly to the FDA (800.332.1088 or www.fda.gov/medwatch). You can search the website for side effects, though you’ll need patience and a medical dictionary.

While we wait for the drug companies to make better meds, we can keep current ones from damaging us. It takes some work, but it’s better than waking up one day to discover you’ve been groping retired government officials. 

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