Jordan Weissman's Atlantic article The Saddest Paragraph You'll Read About the Government Shutdown Today resonated with me -- because on Tuesday night I attended The Children's Inn at the National Institutes of Health (NIH) 25th Annual Gala. We were raising money for and celebrating the Inn, a place like home for children and their families while they are treated for life-threatening conditions at NIH. I've attended the event before and was always inspired by an incredible community joining together to support families during their crisis (and what could be worse than a sick child?) Even if research doesn't have all of the answers, there is hope in new treatments at NIH. The Inn provides a healing environment -- kitchens, playrooms, playgrounds, and loving staff and volunteers to support the family.
The gala is usually high energy but last night the joy was dampened. Despite the extraordinary Cokie Robert's as emcee, moving presentations, great music and sparkly lighting. The elegance of the evening coexisted in stark contrast to what is happening in our country. Francis Collins, the Director of NIH, told the audience that the shutdown would CLOSE the door of the NIH Clinical Center to new patients. This is bad news for all of us because any delay in the medical research makes a difference for every human on the planet. But imagine the urgency parents of children with cancer, HIV, or other life-threatening conditions experience?
The scenario: After months of chemo or radiation, surgeries, and hospitalizations, your child's traditional medical treatment isn't working. As a parent you feel hopeless until you find there is a new treatment protocol at the NIH. Your discover your child is medically eligible to enter a clinical trial that could mean months or years of remission, or even a cure.
Your suitcases are packed, you have transportation mapped out, and, most important, you have renewed HOPE. Some of the best experts in pediatric oncology or immunotherapy are waiting to admit your son or daughter to the Clinical Center at NIH. It's just days, hours away.
Except the people you and your fellow America's elected to run the government have nailed up a CLOSED sign. You are not the only person to suffer from the shutdown -- millions of American's will be harmed: some will be crushed under the weight of unpaid bills, others will lose out on a once-in-a-lifetime visit to a historic landmark or park (priceless.) Terrible things will happen to good people -- but not as bad as the possibility of losing the fight for your child's life.
This Washington Post headline, Children's Inn Bi-partisan Gala Has No Shows On Shutdown Night, is an example of a first world problem (defined as frustrations and complaints that are only experienced by privileged individuals in wealthy countries.) A child, or anyone, with a life-threatening illness needs help and prohibiting medical care professionals from offering treatment and hope is a travesty. Let a little light shine on us.
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