Washington can work
April 21, 2014
I spent this past Thursday on Capitol Hill, walking through the long halls and tunnels of the Hart, Cannon and Longworth buildings, the respective offices of our nation's senators and congressional representatives. I met with Nevada lawmakers, advocating on behalf of those like our daughter, Elsie, who suffer from cystic fibrosis.
Thanks to the scheduling efforts of the Cystic Fibrosis Foundation, I experienced the privilege of meeting with Senators Heller and Reid, including Sen. Reid's senior policy advisor, Representatives Mark Amodei and Joe Heck, and the Health Legislative Assistants of Reps. Horsford and Titus. I told Elsie's story and advanced the agenda of the foundation, requesting the budgets of the NIH and FDA be upheld so groundbreaking progress could be maintained in pursuit of a cure. Additionally I asked they do what they can to preserve the model created by the CFF to provide quality, accredited CF care centers, in spite of any changes mandated by the Affordable Care Act.
I also asked the representatives to join the CF Caucus, to which Rep. Amodei verbally committed, giving Nevada a voice and ally in the fight against CF.
However I also entered into these meetings with a very special request. Three weeks ago I met a young lady from Reno, who was celebrating her 13th birthday. Millicent Westby suffers from cystic fibrosis and requires a lung transplant, or she may not live to celebrate her 14th birthday. Millicent's mother, Christine, is a hard-working, single mother of five. She received a letter from her insurance company informing her Millicent would be covered under her mother's policy, however the surgery would have to be performed in St. Louis, not at Stanford as requested by our doctor at Renown, because Stanford doesn't qualify as a "children's specialty clinic." (Millicent underwent treatment at Stanford University for nine years until Renown Children's Hospital in Reno was accredited as a CF quality care center, by Stanford.)
I explained to our lawmakers Christine doesn't have the means to uproot her family and relocate it to St. Louis, nor did Millicent and her family have the support system in place there. I asked lawmakers to help this family.
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Senator Reid's advisor provided me contact information of an assistant in Reno. Immediately following the meeting I returned to the hotel, emailed and provided this person the information. Within two hours she had contacted Christine and requested a copy of the letter and all related correspondence.
Christine call me that night and the following, telling me of the progress and her newfound help in the fight to save her daughter.
I was humbly reminded democracy can work when constituents take an active role. Thank you to our lawmakers for being accessible, receptive and responsive.