Hi, it’s Sue! Back in 2018 or so, I was celebrating getting into a clinical trial. I vowed I would do whatever I could to become the best, damn “lab rat” that Wills Eye Hospital had ever seen. I was going to be a super lab rat with all sorts of great accomplishments to my credit. [Lin/Linda here: it was actually June 2019 when she wrote about being accepted into the APL-2 clinical trial: Finally a Lab Rat. Considering how active her life is, I’m not at all surprised she can’t keep the dates straight! ::grin::]
Spokes Rat
Well, I don’t know if I have actually been good enough to be considered a super lab rat but today I fulfilled one of my pledges. Today I became a ‘spokes rat’ for the medication they have been shooting into my eye, Syfovre. Yes! If your mind can conceive it, you can achieve it. Positive thinking, folks, positive thinking. [At the end, I’ve listed the pages she’s written about her experience in this clinical trial.]
My friend took me to Wills Eye Hospital in Philadelphia today for my very first – and possibly last! – television interview! How do you like that for a kick in the pants? I was interviewed by the local CBS affiliate and I suspect the anchor person and the cameraman were really sorry they had caught this assignment. I talked their ears off…for about 45 minutes… or more. [It will be uploaded to YouTube. When it is, of course I’ll share it.]
I was anxious; yes. By the time they pare my 45 minute ramble to about 45 second, I will not have much exposure but it was still my FIRST TV APPEARANCE. There are over 1.5 million people in Philly. What if somebody sees me? Gulp.
But more important is this: I wanted to get out the right message. I did not want to talk about what it was like to lose my sight. That was over 7 years ago. People who look to the past with sadness and regret get depressed. I have no time for such things. I wanted to talk about now and the future. I wanted to talk about hope.
When I thanked Dr. Garg for recommending me for this assignment he said he wanted someone with energy and enthusiasm. How can I NOT be enthusiastic? In seven years i have gone from the hopelessness of being told there is no treatment and no cure to the approval of the first treatment for geographic atrophy. And I helped. Sort of.
Syfovre can buy us time. Time to ultimately find the cure for dry age-related degeneration, a disease that some say is of epidemic proportion. Lot of people losing their sight out there but at least they now have hope.
Of course, there are still some hurdles to jump over. One does not manufacture millions of doses of a new drug overnight. Apellis is gearing up even as I type. Also, this is not an inexpensive proposition. It was mentioned that the research staff is thinking about injecting both eyes of us ‘lab rats,’ but they are not sure how to cover the cost. How much will Medicare and other insurance companies cover? These are questions for which the answers are still being formulated.
And future treatments? I am still lobbying hard for stem cells but today I heard gene therapy is looking very promising.
The word is promising. It is related to hope. It is related to a brighter future, if your mind can conceive it, you can achieve it. If I can give a TV interview, just about anything can happen!
Sue’s Series on Syfovre
Lin/Linda: Her first aspiration to be a ‘super lab rat’ was not long after she considers the start of her status as legally blind: February 2016. You can read about that here: In the Beginning.
It was June 2019 she was Finally a Lab Rat. In July of that year, she wrote about her first injection: The Beginning of My Clinical Trial.
In August 2022, before the FDA approved Syfovre and after she was accepted into the long-term follow-up study, she wrote about her ‘Diabolical Plan’ to be accepted into a stem cell clinical trial while she’s still alive: My Diabolical Plan: Stem Cell Transplant for Dry AMD.
She also wrote about the discussions of the studies: Pegcetacoplan Study Cliffhanger.
After the drug was approved, she revised her article from her perspective of being halfway through the 3-year follow-up study: My Diabolical Plan Revisited March 2023.
She’s also written What Does Syfovre Mean for You?
Who is Sue, and Why Should You Get to Know Her?
Since there’s not a simple answer to that, I recommend that you choose this where I’ve provided an answer.