Those words from two-and-a-half-years-ago comprised the last Facebook post from my first cousin once removed. Peter Leatherman, the son of my cousin, Tom, from the Columbus, Ohio area, died just over a year later from cystic fibrosis. I’m thinking about him today as I read the news about a so-called breakthrough in the battle against cystic fibrosis, a genetic lung disease that cruelly takes young lives just as those lives are entering the full flowering of adulthood.
More on Peter in a moment. The medical news, published yesterday in the New England Journal of Medicine, is that a combination of two drugs is showing major promise toward improving the health, and perhaps the life spans, of people suffering with the most common form of cystic fibrosis. The controlled trials included more than a thousand people with the disease, age 12 and older, who were treated for six months. “This is the beginning of effective therapy for cystic fibrosis associated with the most common mutant form of CFTR,” wrote Dr. Pamela Davis, dean of the school of medicine at Case Western University, in an editorial accompanying the findings.
Cystic fibrosis leads the body to overproduce thick mucus that leads to chronic lung infections. There’s no cure, but recent advances in treatment have meant that people with the disease can live longer, more normal lives than just a few decades ago. Having said that, it’s still a slow motion death sentence. The median predicted life expectancy is 37-years in the U.S., but much lower in less developed nations. A final decision on the new drug cocktail by the Food and Drug Administration is expected in July, but an advisory panel has already recommended passage by a 12-to-1 vote.
My cousin’s life could be a case study of how CF robs the world of well-lived and worthy lives; despite a diagnosis sufferers are literally born with, Peter never gave in. He was the valedictorian of his Worthington, Ohio high school class; he got his college degree from Ohio State, and was pursuing a master’s degree in chemical engineering when his condition worsened to the point that the lung transplant was attempted. But there were complications, and after fighting for year, he died at the age of 26. His family was, and is, heartbroken.
I’m sure they’ll hear today’s news and feel hope; not for their son anymore, but for the 14-thousand other Americans still battling that form of CF. Just like my wife and I have experienced with autism, it’s hard to buck up when the words “no cure” hang forever over your heads. You can only count on science and research moving forward, so “forever” one day leaves the equation.