A link to Washington
Online petitions can travel far and wide in an instant, but sometimes its takes an old fashioned trip to Washington DC, and
the courage to speak up, to make a change. Not surprisingly, it was the internet that first brought Camila Strassle, currently
a freshman at Stanford University, to the Cystic Fibrosis Foundation (CFF).
"I have a brother with cystic fibrosis, so my mom and I were looking online for ways that we could get involved," says Strassle.
"The CFF had a link for advocacy and through that I found out about a teen program for siblings with cystic fibrosis to actually
go to Washington DC and advocate on their behalf." The reason cystic fibrosis patients can't get together to lobby on their
own behalf, notes Strassle, is because they can't be in the same room together, due to the risk of cross-infection.
For the past four years, Strassle has gone to Washington to participate in the CFF's Teen Advocacy Day; she has met with more
than two-dozen members of Congress. In 2010, she helped turn a bill – the Improving Access to Clinical Trials Act, or IACT
– into law. "It was a bipartisan bill that was passed and signed into law by President Obama," says Strassle. IACT address
a problem with clinical trial participation. Before its passage, people who received Supplemental Security Income weren't
allowed to accept research compensation, because it rendered them ineligible for public medical benefits. "With rare diseases,
it's a small population, so it's hard enough already to find people to participate in trials," says Strassle. "It was slowing
With a host of new therapies for cystic fibrosis entering or nearing the market, Strassle says one of the main initiatives
currently at the CFF is promoting access to specialized 'care centers,' a network of CFF accredited centers built on a model
that recognizes the unique needs of cystic fibrosis patients. "For example, specialists working in the care centers look at
the pancreas, at nutrition, at all of these separate issues that effect patients with cystic fibrosis," says Strassle. "As
a result, life expectancy for patients has increased over time, and the NIH has come out in support of this model."
According to the CFF website, over 110 care centers are accredited nationwide, with more than 260 clinics where children and
adults with cystic fibrosis can get care. The centers also participate in clinical research, and data from the centers is
collected in the CFF's patient registry. Aside from the care centers, the CFF runs a nonprofit drug development affiliate
called Cystic Fibrosis Foundation Therapeutics, Inc. (CFFT). The CFFT partners with pharmaceutical companies and receives
royalties from drug sales developed using CFFT funding, and most cystic fibrosis drugs have leveraged the basic research and
clinical trial network operated by the CFF, according to the website.
Strassle continues to advocate with the CFF on her brother's behalf, and worked as an intern with the CFF's public policy
department last summer. As a freshman, Strassle is completing her general requirements, but is planning to double major in
English and health policy. She'll be looking out for the health policy track next year. "I'm really looking forward to taking
those classes," she says.