A Big Decision: Should I Try the Port Delivery System for Wet AMD?
In a previous article, I shared how I was offered a place in a clinical trial.
I had returned ahead of schedule to my retina specialist (RS) because I noticed a change in my vision. He diagnosed newly-developed wet macular degeneration. Then, instead of immediately giving me an injection, he discussed a trial.
What is the port delivery system?
The trial was for a device called the port delivery system (PDS). This eye implant releases a drug called ranibizumab (Susvimo) in a controlled dose into the eye for 6 months or more.1
This means that people with wet macular degeneration don’t have to return regularly to their doctor to have their anti-VEGF injections. My RS was conducting this trial in his practice.
A big decision had to be made, and I went away to research it. I could email or phone the research assistant whenever I needed to ask questions.
Evaluating the pros and cons of the PDS
The next month was spent evaluating how this would affect me. What were the pros and cons? Would I say "yes" or "no" to the trial?
The potential advantages seemed obvious. If the implant was inserted, I could perhaps go many months without having to make the trip to see the RS. This would make life easier, especially as I got older, or if I had difficulty driving.
I also realized that I would be doing a little bit of a "public service" because someone has to trial new things, or we would get nowhere in medical developments.
Why I decided not to participate
Eventually, I decided to say, "No, but thank you anyway."
My decision was based on my own personal feelings as they relate to my particular situation. Someone else could just as easily decide "yes" on the same information.
Deciding not to participate was influenced by the following issues:
Increased doctor supervision
More visits would actually be required than if I were receiving injections. The device needed to be inserted in a mini-operation, checked again soon after, and checked regularly during the trial. A visit was also needed to refill the medicine in the implant. This negated the theoretical advantage of needing fewer visits.
Risk of adverse events
There was an increased risk of adverse events with the port delivery system compared to the injections. This had been observed during the trials to date. Some devices had failed and been recalled because of dislodgment or dislocation issues. Trials were back underway now.2,3
Retinal detachment was another possible adverse effect, as was vitreous detachment. Damage to the surface of the eye had also occurred during the trials.3
Researchers seem to be taking steps to mitigate these issues.
My RS recommended a different medication
Another point which swayed my decision was that my RS was honest enough to say that Eylea would be his drug of choice for me in injections; but he was quick to say that the Susvimo would work. He stressed that.
Maybe one day, but not right now
I felt guilty when I had to return and announce my decision. I apologized for not being able to say "yes."
The research team and the RS didn’t seem to mind. They did gently ask me for my reasons, though. I was glad I had gathered my thoughts before I gave them my "no" answer so that I could explain my reasoning.
My hat goes off to all of those who participate in trials. There is always an element of uncertainty; otherwise, it wouldn’t be a trial.
I hope this port delivery system goes on to become a very useful tool in the treatment of wet macular degeneration. Maybe I will use it one day, but just not now.
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