What Does Syfovre Mean for You?
Last updated: May 2023
February 12, 2016, 7 years ago, I was diagnosed as legally blind. While the words were not these, to me, the sentiment was the same: “You have advanced, dry age-related macular degeneration. There is no treatment and there is no cure. Go home and quietly wait to go blind. Copay, please.” Great.
Seeking out options
I did not totally believe him so I did my research. Yep. The doctor was right. I found exactly nothing. There were no treatments and definitely no cures for geographic atrophy (GA).
Of course, me being me, who has never done anything quietly in my entire life – not to mention my delusions of
grandeur – I decided to go and find that treatment. I got myself an appointment with Carl Regillo – a retina “god” as far as I am concerned – and had myself referred to studies... about 6 times. Have I mentioned I am nothing if not persistent? Yeah, thought I did.
The persistence paid off about 5 years ago when I was placed in a clinical trial for APL-2. That was exciting but the real excitement came on February 17, 2023. ‘My” drug, now renamed Syfovre (si-fo-vree), was approved by the FDA!
What does it mean?
What does that mean? To me, it means I accomplished what I set out to do. I was a minuscule little cog (nut?) in a machine that delivered the FIRST EVER IN HISTORY treatment for geographic atrophy, AKA: advanced dry AMD (age-related macular degeneration).
But more importantly is what Syfovre means to you. This drug means hope. This drug means no retinal specialist ever again has to tell a patient there is no treatment, no cure and they should go home and go quietly blind.
No GA patient will need to leave his retina special appointment feeling hopeless. This drug shines a glimmer at the end of the tunnel. We just may get out of this yet.
Proceeding with caution
Please note I said a glimmer and not floodlights. Syfovre is not perfect. The results are modest, slowing the growth of the lesion by about a fifth. To my understanding, it is not going to keep us from reaching the inevitable, just slow it down a bit. A secondary endpoint of the study was not reached. This end goal was to improve vision.
Frankly, I have been a little confused about the consternation associated with the failure to reach a vision improvement goal. To use a toboggan analogy, if you are careening wildly down the hill and people are falling off as you go, if you manage to slow your speed, those people don’t suddenly jump back on the toboggan; do they?
Gone is gone. In the case of my retina cells, dead is dead. This treatment is not going to bring them back to life, but it might reduce the speed at which they are dying.
Then, of course, is the question of side-effects. Everything, including breathing, has side-effects. The question is therefore actually one of costs and benefits.
If you feel the results are not worth the risk, Syfovre may not be for you. If you think your chances are good, you may want to try it. This treatment, in the end, is a personal choice.
On the horizon
A final point to be made here is this: Syfovre may be the first treatment for geographic atrophy but it won’t be the last. News sources indicate the producers of Zimura have filed for priority status with the FDA. They are hoping to push Zimura through the approval process something this summer.
And then there were 2.
Hope is on the horizon for geographic atrophy patients. I am proud to have done my little, tiny bit to advance medical science, and always remember, this is the best time in history to be going blind!
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