An Hour of My Time: Clinical Trials and Me

One of the joys of retirement is that I get to pick and choose the meetings I attend. No more Monday “what are we all doing this week?” exercise. There may be people who like sitting in meetings but I am not one of them.

One exception

Ask me to help find a better treatment for macular degeneration and I’II be there. Of course, with Zoom I don’t have to get dressed up or take the bus downtown. Just plop in my office chair.

That’s why I applied to be part of a focus group about attitudes toward a new treatment for wet AMD that is now in clinical trials. Note: I spent several years working for a nonprofit dedicated to improving our understanding of how their gender makes a difference in women’s response to drugs and encouraging women to take part in clinical trials.

The meeting

There were three women and two men on the call. We were each at a different stage of our journey with AMD. Not all of us were over 65. We differed in levels of vision and independence.

We were asked a series of questions about our experience from diagnosis through our current treatment, how we dealt with the changes in our vision, and how we responded to the injections. We talked about our families, our search for information, and what we would like to be told about our condition and when.

The big question, of course, was whether we would participate in an actual clinical trial that would involve a drug requiring an outpatient surgical procedure on our “good” eye. Or use that drug if it came on the market.

Hypotheticals

The basic benefit was that it could mean no more injections ever or only once or twice a year. There was a long pause. And then came the questions.

Is there a chance there would be an improvement, not just maintenance? Would there be a danger of losing sight in that eye? Would there be payment for travel expenses to the clinical trial? Where would it be? When and how would I know if I got the placebo or the drug? If it did go to market, would my insurance cover it? Would it be more or less expensive than my current treatment?

The commentary

One of the interesting parts of the discussion was that people were clearly trying to balance their personal interests with those of other patients:

"Getting to my monthly appointment isn’t a problem now, but it could become one,” someone said. “There are people who do have trouble, who have to travel a long way to get to a retina specialist, for example.”

“It might not be for me but maybe it could help someone else,” another said. “If AMD is genetic maybe my son or daughter or grandchild could benefit from this at some point.”

Making a difference

At the end of the session, I felt a definite willingness to make a contribution to society. “If I don’t do it, who will?”

One more thing... Each of the people on the panel talked about how difficult it was to get information about their diagnosis from their health care provider. “Millions of people have this. Why doesn’t every doctor have a packet of information to hand to every new patient.” Is someone out there listening?