Waiting for Care: The Shutdown and Kids with Cancer

Today marks one week since the federal government shut down - and, along with it, the National Institutes of Health (NIH).


In the News:  Children with Cancer

Children with cancer were thrust into the national spotlight this past week as a face of the shutdown's impact when Francis Collins, director of the NIH, revealed that new clinical trials at the NIH Clinical Center would be delayed as long as the shutdown continues. That's approximately 200 patients per week being denied potentially life-saving treatment -- and about 10 of them are kids with cancer.

This alarming story was widely reported in major media outlets:





A Community at Work: What's Being Done?

Those of us in the childhood cancer community are already far too familiar with the major impact any cuts in government funding can have on kids with cancer. Pediatric cancers are considered rare, without economic incentives for private research. Therefore, federal funds are critical. And children are particularly dependent on federally-funded clinical trials, with over 60% of kids with cancer enrolled in one of these experimental treatments. The sequester cuts have already disrupted and delayed critical research, and the burden becomes heavier with each additional day the government remains shut down.

  • We signed on to a Cancer Leadership Council letter that was sent to Capitol Hill this week, urging Congressional leaders to end to the shutdown without further delay.
  • Pediatricians, pediatric residents and medical students visited Capitol Hill yesterday to advocate for the best interest of children's health by ending the shutdown.
  • As of Friday, the NIH website re-opened registration at www.clinicaltrials.gov and recalled some furloughed workers to process new applications for clinical trials. Still, the NIH Clinical Center won't be accepting new patients - including those estimated 10 kids each week - until NIH funding is restored.

What Now?

We remain extremely concerned about the impact of the government shutdown on children with cancer and their families. It is time to reopen the government, restore the NIH budget to pre-sequester levels, and most importantly, provide access to the care these children deserve.

And we hope that after the government re-opens, the media and political leaders continue to demonstrate the same level of concern for our nation's kids as they have this past week.

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