Catching It Early
Advocating newborn screening for CF

FALL 2006 -- Packard Children's recently spearheaded legislation to initiate universal newborn screening for cystic fibrosis (CF), thanks, in part, to publicity generated by Packard patient Molly Pam of Menlo Park.

Molly Pam

Molly was diagnosed with CF when she was in fourth grade, following months of testing to find the cause of her chronic illnesses. Now 18, she has made it her mission to increase public awareness of the disease, advocate for newborn screening, and bolster support for CF research.

Last October, Molly presented a "Perspective" opinion segment on KQED calling for CF to be included in California's newborn genetic screening program, which now screens for 86 other genetic conditions. "If I had been diagnosed at birth, my lung function might have been 90 or even 100 percent right now, but without preventative antibiotics and the right medical care, my lungs acquired irreversible damage that will haunt me for the rest of my life," she says.

This powerful argument was subsequently taken up at the urging of Molly, her family, and physicians at Packard Children's by the Hospital's government relations staff. Under the direction of Government Relations Director Sherri Sager, a statewide coalition of children's health and CF advocacy groups crafted legislation. In February, State Sen. Liz Figueroa (D-Fremont) introduced Senate Bill 1748 to include CF in the California's newborn screening requirements.

Molly testified at the Senate Health and Assembly Health Committees' hearings of the bill, which together with the Senate Appropriations Committee approved the bill overwhelmingly. The language in SB 1748 was added to the budget health trailer bill that the Governor signed in July.

California now joins 15 other states that screen newborns for CF. The new "California CF Gene Panel" screening is comprised of 37 severe mutations that will identify 95 percent of cases in the state. The average age of diagnosis should decrease from 3.3 years to only two weeks, enabling quick referral to a CF specialist for ongoing follow-up and care.