Taking Control of My Dry AMD

Things are a little crazy right now and I am sort of going around in circles. I want part of my circling to bring me around to writing again about the clinical trial I am in.

I am not going totally blind

When I was first diagnosed I was told I was going blind and there was no treatment and no cure. Later I discovered the “going blind” part was a bit inaccurate. I was going centrally blind. I was not - and am not - going totally blind. Those of us with dry AMD can expect to retain peripheral vision. I have it on good authority, from an internationally renowned retina specialist, that a prediction of a loss of a third of my visual field was pessimistic and nowhere near realistic from what he had seen.

I was not happy with the answers I found

The “no treatment and no cure” part was correct at the time. I looked. I was all over the internet looking. There were all sorts of bright people coming up with new, bright ideas for wet AMD treatments and absolutely nothing for dry AMD. I was not happy with what I found, but I kept looking.

The first potential treatment

A couple of years ago there was a glimmer of hope. Lampalizumab had done great things in phase 2 trials.¹ It was being touted as potentially the first treatment for dry AMD. I watched and waited only to watch “Lamp stuff” fall flat on its face in the phase 3 trial, BOTH phase 3 trials.² Back to the proverbial drawing board.

No treatment for the leading cause of blindness?

In this day and age, it is hard for people to fathom there is a condition without even ONE treatment. Add to that equation the fact that the condition in question is one of the leading causes of blindness in the developed world. Add to the equation there are literally millions of us. Things don’t add up!

Feeling hopeless

Being told there is nothing to be done can lead to a very defeated feeling. It suggests hopelessness. However, I was raised with a strong belief in my own power. Being told there was no sense trying and - although not in these words - I should go home and go quietly blind did not sit well!

Dry macular degeneration clinical trials

My answer was to keep looking. I was determined to find a clinical trial that would have me. I found an internationally known retina specialist, top in his field because he would be my ticket into a study. I made my husband drive me 90 minutes one-way twice a year without fail. I was going to get into a study. Being a patient in this practice was going to get me there.

Why? At least this way I would be fighting. At least this way things would not be happening to me. I would be happening to them. That powerless feeling would ease because I would be DOING something.

Finding a clinical trial

I got my chance a couple of months ago. I was asked in. At last I am fighting back.

Want to fight back, too? ClinicalTrials.gov lists the clinical trials available in the United States. Also some foreign nations. It is a good place to start.

Please keep in mind ClinicalTrials.gov does not vet the trials they list. It is up to you to choose wisely. Here's a list of things to keep in mind when looking into clinical trials:

• Look for multicenter studies that have larger hospitals as sites.
• Look for large drug companies sponsoring the studies. I am not pushing big pharma but there are some charlatans out there who have caused damage. You have a better chance of avoiding them if you stick with the “big boys.”
• Also remember that you should never pay to be in a clinical trial. They pay you.

Good luck and good hunting. Go get your power back.

Editor's Note: As of August 2023, 2 drugs known as complement inhibitors — Syfovre® and Izervay™ — have been approved by the US Food and Drug Administration (FDA) to treat the advanced stage of dry age-related macular degeneration, or geographic atrophy (GA).