Wake Up! The Drugs Aren't Good Enough!

It's time to wake up.

The drugs aren't good enough.

They don't work for half the people that get them, and they come at a high price when they do work.

I understand that we are tired. We want to take a break from "acting up." Lets face it, we're grateful that we don't have to go to a funeral every week. Some of us are back to work. Some are pumping iron at the gym. Life seems normal again.

The antivirals we take give us a new lease on life. But, the lease has some fine print.

We would like to ignore the warnings that are everywhere -- painful joints, skyrocketing cholesterol levels, diabetes, running to the bathroom, nightmares, neuropathy, swollen breasts and bellies, shrunken faces, friends dead at 40 from heart attacks. We all know folks who are not doing well.

The hope is that we can keep taking these pills for a lifetime. It's not real. And our bodies can't keep this up.

We need some changes. Changes that will get us better therapies now.

Changes in What We Will Allow Companies to Test

Sometimes companies want to copy the hot new drug, wasting money, time, and our bodies -- just to increase profits instead of doing the hard work of developing a better drug, less toxic, or not cross-resistant.

If we see a trial of a copycat drug, we need to shut it down. If it's a new, non cross-resistant, less toxic drug, we need to speed it up.

We must demand changes in when and how we can get experimental drugs

If our cocktails stop working we need access to any drug "in the pipeline" right away. We need a national program that allows a doc and patient to pick and choose from all drugs in the pipeline.

Right now, these so-called "compassionate use" programs are set up by the companies -- each with different rules and regulations, creating confusion. The result: people die because they can't get through the bureaucratic maze.

Changes in How We Test for HIV

Most HIV tests are antibody tests. Antibody tests are not good enough. They may not give a positive reading after infection for as long as six months, while viral load tests tell you right away if you were infected.

It is critical to know right away, because if we get treated within a few weeks of the event, we can save the part of our immune system that fights HIV.

This means we might avoid having to use antivirals all the time for the rest of our life.

Changes in How We Use the Drugs

We need more attention on doctor-supervised drug holidays. Our bodies need a break from the poisons, and we already know ways to do this safely. For us, it saves our bodies. For poor countries, it makes drug therapies more affordable.

Changes in Our Attitude

Medicines give us breathing space. Let's use it to push for better drugs.

Without some change, we will continue to have therapies for HIV that the majority of the world cannot afford and on which the rest of us can't survive.

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David Scondras, longtime community activist and educator, is the founder and president of Search For A Cure.