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In The Spotlight

Bill Elder Jr.

Bill with Collins

Bill Elder Jr., who has CF and is a third-year medical student, greets Francis Collins, Director of the National Institutes of Health, on Capitol Hill before President Obama’s State of the Union address earlier this year.

During his State of the Union address, President Barack Obama outlined a plan to make precision medicine part of America’s healthcare culture. He named cystic fibrosis as a prime example of how nonprofits, the pharmaceutical industry, researchers, patients and their families can work together to produce more targeted and effective treatments.

Attending the speech as a guest of first lady Michelle Obama was 27-year-old Bill Elder Jr., who has CF. Bill was diagnosed with the life-shortening genetic disease when he was 8. Today, Bill is one of a small number of CF patients who can benefit from a breakthrough treatment that targets the underlying cause of the disease — a drug that epitomizes the idea of precision medicine.

Bill’s experience with personalized medicine has allowed him to pursue his dreams: He is a third-year medical student who has hopes of practicing family medicine after completing his residency. Bill sat down to talk with us about living with cystic fibrosis and what it was like to be part of the President’s address.

How do you feel knowing you were able to represent the ideas behind precision medicine and the CF community on a national level?

It’s very humbling, and a role that I don’t take lightly. The CF community is large and diverse and there are so many people with this disease who are doing amazing things. But that doesn’t mean our fight is over. We still need a cure, and precision medicine can help us get there.

I’m so lucky to be a living, breathing example of how precision medicine can work. I started taking a breakthrough treatment for cystic fibrosis a few years ago, and it has changed my life. This new treatment is allowing me to pursue my dreams. I don’t go to the hospital as often, which means I’m able to focus on school. Because I’m in medical school, I’m exposed to a lot of different germs. Without Kalydeco, I know I would get sick a lot more often, but since taking the drug, I haven’t had a flare up.

How did you find out you were invited to attend the State of the Union as a guest of the first lady?

It’s a pretty funny story. A number I didn’t recognize called my phone, and I assumed it was the pharmacy calling to tell me they had refilled my medication. When I answered, I heard someone say they were from the White House. I thought I was going to be asked to donate to a political campaign. When I realized I was being called because Michelle Obama invited me to attend the State of the Union address, I was in shock, but of course I said yes.

Tell us about your experience.

Bill with father

Bill Elder Jr., shares a moment with his father, Bill Elder Sr., before the State of the Union Address.

It’s something I’ll never forget. Prior to the address, all of the guests of the first lady met in the East Wing of the White House for a reception. I got to meet so many incredible people, including the astronaut Scott Kelley. We also had the opportunity to meet Michelle Obama and Dr. Jill Biden.

After the reception, we were taken by motorcade to the Capital for the State of the Union. We all sat together and had an amazing view of the House Chamber. When President Obama said “cystic fibrosis,” everyone I sat with turned to me and clapped. That was really special.

In addition to attending the State of the Union address, you were also a guest at a meeting at the White House where President Obama outlined details for his precision medicine initiative. There, President Obama called your name, asked you to stand and share your story. What was going through your mind when you received a standing ovation?

It was another moment I will never forget. I was in a room with some of the brightest medical leaders of our time, including the surgeon general and NIH director, Francis Collins. I had no idea the president was going to mention me or CF.

It was an honor to be recognized by the president and to be surrounded by medical leaders and other people who have chronic diseases. The experience reminded me that those battling serious illness are not alone. We are all in this together.

What drew you to the field of medicine?

Growing up, I loved science — and I still do. I’ve always been interested in exploring the natural world, but I realized early on that I wanted to do something to help other people. I was very influenced by my CF care team and they helped me realize that medicine was the perfect combination of studying natural sciences and helping others. I had a calling, and now I’m pursuing my dreams.

How does it feel knowing the model established by the CF Foundation may now be used to help others with chronic diseases?

It’s not surprising to me at all that this is happening. For so long, the CF Foundation has been on the cutting edge of medical and technological advances. I think it’s inevitable that we take the ideas behind venture philanthropy, personalized medicine, the CF patient registry and the care center network and apply them on a broader level.

What advice do you have for other people who have cystic fibrosis?

I have been lucky enough to be one of the ones who can benefit from a breakthrough treatment, but personally, I also believe that running has made a difference in my health. I encourage everyone with CF to run. Running is one of the easiest and most effective ways someone with CF can stay healthy.

I also encourage people with CF to never let the disease hinder their future. The search for a cure has never been more exciting. There is so much research going on and so many people who are dedicated to ending this disease. My advice to others with CF is to follow your dreams, never give up and have hope. I’m confident we will find a cure.

The Cystic Fibrosis Foundation is an accredited charity of the Better Business Bureau.