It is May 14, 2019, the day that I turn 21, and the day that President Monaco emails the news that Sam Lobley passed away from complications related to cystic fibrosis (CF). As another Tufts student with CF, reading this email makes me feel guilty. It makes me feel lucky. It makes me wonder: Why not me? Why am I the one who is healthy, who is celebrating her 21st birthday?
I am so very glad to be alive, and today I am celebrating that fact, but this news hits me hard. It makes me feel sad and helpless that not everyone with CF can be as lucky as I have been. That not everyone can be healthy on their 21st birthday. That not everyone benefits from the new generation of medications that have come out over the past few years. That some people with CF start out their lives immediately struggling with their health while others are asymptomatic for years.
CF is a serious, chronic and progressive disease. It is genetic and is caused by a defect in a protein known as cystic fibrosis transmembrane conductance regulator (CFTR). This single defect affects many parts of the body, but usually the most dire consequences present in the lungs. Despite the severity of CF, the internal nature of the disease often makes it completely invisible to outside observers. It would be very difficult for someone who did not know me to guess that I have a chronic illness; I look like your average Tufts student, yet I have been hospitalized for several weeks due to serious lung infections and am on a multitude of medications in order to maintain my health.
CF research has made extraordinary progress over the past two decades, moving the average life expectancy from only 16 to late 30s, but we still need to do better because it is not fair. It is not fair that some people with CF are dealt an even tougher hand than others — that some people get to live an entire life while others’ lives are cut short. The fact that CFTR modulator drugs have completely changed certain people’s lives is remarkable, but we still need to do better. We need to widen the scope of these new treatments so that they help every single person with CF, no matter their particular CFTR mutations.
Sam, I wish I could have known you, and I send my deepest condolences to the family and friends who did know you and must now cope with this tremendous loss. You sound like a very special, strong, wonderful person who touched many lives, and even though we never met, you’ve touched mine. You were a fighter. People with CF? We are all fighters. We can and must keep fighting to better the lives of everyone affected by CF, on behalf of the living and in honor of the passed.