For years, a picture of Dr. Francis Collins, torn from the pages of a 1989 issue of Newsweek, held fast to our refrigerator door. Two red magnets placed him in the middle of Little League schedules, school rosters and Citizen of the Month certificates.
When Collins discovered the gene for cystic fibrosis, my daughter was only 5 years old and no stranger to the hum of a nebulizer or to swallowing pancreatic enzymes folded into peanut butter and jelly sandwiches. She could spell Bactrim and Proventil as easily as the words on her first-grade spelling list. But Collins’ benevolent face gave us hope, and so his image stayed in our kitchen amid the other happy signs of a suburban family of four.
Two months ago, the Los Angeles Times reported a potential victory in the war against CF with the development of a new experimental drug called ivacaftor. Although ivacaftor by itself treats only a small percentage of those afflicted with cystic fibrosis, clinical trials are underway to combine it with additional drugs to target other mutations that cause the disease.
In the 22 years since the discovery of the CF gene, scientists have learned that there are hundreds of CF mutations, making a single, elegant cure less likely and scientific exploration more complicated. Still, life expectancy has improved for patients who endure periodic intravenous antibiotics, fistfuls of pills and inhalers, the steady drumbeat of the nebulizer and being shaken like a martini within the confines of a high-frequency inflatable vest attached to a noisy, powerful compressor. (At least the vest comes in pink these days, which would have been nice when my daughter was 7.)
Learning fairly early that hand-wringing is more effective as a collective experience, I am a devoted member of a loosely constructed but all-important group of savvy CF moms. Emails fly across the Westside when new concerns arise. Our children are now young adults, brazenly optimistic and seemingly undeterred by their disease or the time-devouring regimen that is required to maintain their health. They play competitive sports, power through elite universities, take on challenging internships and devote themselves to demanding jobs — even while stopping to cough and catch their breath along the way.
After graduating from Stanford and receiving two masters degrees, my daughter now works as a health policy analyst in Washington, D.C. I am certain that her personal experiences with chronic illness and bureaucracy, coupled with her fervent belief in science, have endowed her with public policy skills she did not learn in graduate school.
As news of ivacaftor explodes within the CF community, I find myself hunting for the faded photograph of Collins that once smiled at us with silent hope every morning when we reached for the orange juice. In 1989, we celebrated the discovery of the CF gene. Now, in 2012, we embrace the new frontier in the treatment of cystic fibrosis.
Peggy Stacy is a writing tutor in Pacific Palisades. She can be reached at email@example.com.
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