Dear Mr. O’Donnell,
I want to introduce myself to the man who has played a tremendous role in my life but doesn’t know it. My name is Elana Alfred, and I am married to Eamonn Kelly, who has cystic fibrosis. I read the article about you recently published in the Boston Globe and felt it only fair, since you shared your history with CF, to share mine with you.
I met Eamonn just over 4 years ago while we were both living in Chicago. After a month of dating he told me he had CF. At the time he was 24 years old and was able to live his life “normally” with the exception of having to do many hours of therapy and drugs every day. While the whole article touched me, I got a lump in my throat when I read that CF patients typically live until their mid-20’s. While I have long known this fact, it still hits home. Eamonn is now coming close to 30.
Eamonn was in great shape when we started dating. In the fall of 2009, however, we were told of a new, potentially ground-breaking drug for CF patients. Eamonn’s doctors were encouraging him to be part of phase two of the study, while I was much more hesitant. I knew the pros and the importance of patients taking part in research studies, but I also knew the cons. It meant that he would have to stop taking some of his most effective drugs for a month prior to starting the study, and hope that he got the actual drug and not the placebo. Ultimately, it was Eamonn’s decision and I got on board. He knew he had to take the risk and decided to participate in the study. After less than a week of being off of his current drugs, Eamonn got very sick. He went into the hospital and was taken out of the study. For a short time I admit I was bitter—I wanted someone to blame.
For the next two years Eamonn’s health went on a downward spiral. It happened so fast. Every so often I made nasty comments about the research study and this stupid drug I knew nothing about. Little did I know that soon after, it would be Eamonn’s life preserver. While Eamonn’s health was getting worse and worse and he was in the hospital 4 times within 9 months, we were hearing about VX-770 and the promise it was showing in CF patients who were part of the study. Yet Eamonn had to wait to get hold of this drug, which was actually the most frustrating part of this whole process. However, in July 2011 we were informed that Eamonn and other patients in need were able to get early access to the drug for compassionate use.
I hope that I have not bored you with our story! Since being on Kalydeco, Eamonn’s health has quickly turned around, and he is becoming more and more like the Eamonn I met in 2007. Without the drug I am uncertain of where we would be today. Two days after taking his first dose of the drug, he was told that he was being put on a lung transplant list at MGH. Without this drug I am almost certain he would have needed a transplant by now. Without your determination, persistence, and achievements, I would not be as hopeful as I am today.
Mr. O’Donnell, in the article Richard Mattingly is quoted saying that you were “working for others who still had a chance.” Thank you for fighting for Eamonn. Thank you for telling us the story behind these miracle pills. Thank you for giving the CF community hope, inspiration, and a future.
With all my gratitude,