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Shutdown impairs cancer treatment for children

Thanks to a lack of funds, the National Institutes of Health (NIH) has been forced to close the doors of the NIH Clinical Center in Bethesda, Md., and turn awa
National Institutes of Health- 10/02/13
The administrative building of the National Institutes of Health is shown in Bethesda, Md., Monday, Aug. 17, 2009.

Thanks to a lack of funds, the National Institutes of Health (NIH) has been forced to close the doors of the NIH Clinical Center in Bethesda, Md., and turn away about 200 potential new patients. That includes at least 30 children, according to NIH Director Francis Collins, the majority of whom were supposed to receive experimental cancer treatments.

Patients at the NIH Clinical Health Center participate in clinical studies, during which they are treated using experimental methods. The only patients admitted are those "with the precise kind or stage of illness" currently being studied, according to the hospital's website. That often includes patients who could not be cured through other means.

Dr. Peter Adamson, the chair of the Children's Oncology Group and an oncologist at the Children's Hospital of Philadelphia, told that it was difficult to gauge the direct health consequences for those children, but that it was "obviously not good."

"What I can tell you is the anxiety this creates for families of children who were planning to come there is very difficult to measure," he said. "These are children for whom often there is no curative pathway, and there's a clinical trial that offers hope. And delaying access to that— The one thing families don't have in their favor is time."

The NIH Clinical Center has not shut down entirely. The agency has retained 2,564 members of its staff, and will continue to treat current patients, according to a memo from the Department of Health and Human Services [PDF].

"While NIH would not be accepting new patients or initiating new clinical protocols during a hiatus, the continued provision of care to existing patients (both inpatients and outpatients) means the hospital would be operating at roughly 90% of normal patient load during the initial weeks of a funding hiatus," according to the memo.

The NIH may return to full staffing levels before the rest of the shutdown is resolved if one House Republican has his way. Rep. Jack Kingston, a Georgia Republican, has proposed legislation intended to fully refund the agency even as the rest of the federal government remains under lockdown.

A spokesperson for Kingston told via email that the Researching for Lifesaving Cures Act—part of a slate of "piecemeal" proposals which would refund individual government agencies—would allow the NIH to continue "saving lives and upholding a core mission of the federal government."

But Dr. Georges C. Benjamin, executive director of the American Public Health Association and former Maryland health secretary, called the bill a "joke." Public health agencies have interlocking roles and responsibilities which are stymied by a piecemeal funding approach, he told

"It's a system," he said. "They need to stop the games, the cherrypicking. They don't understand the system well enough to do the cherrypicking."

As an example, he pointed to the work done by multiple agencies to prevent foodborne disease outbreaks.

"We've had all kinds of outbreaks around food over the least several years, and if you think about how complicated those investigations are, they involve the CDC, they involve the FDA, [and] they involve the Department of Agriculture," he said. Simply allocating funding to one of those agencies and leaving the others shutdown would leave the United States at a heightened state of risk.

The White House Office of Management and Budget (OMB) has also rejected agency-by-agency funding proposals.

"Consideration of appropriations bills in a piecemeal fashion is not a serious or responsible way to run the United States government," according to an OMB statement [PDF]. "Instead of opening up a few government functions, the House of Representatives should re-open all of the government. The harmful impacts of a shutdown extend across government, affecting services that are critical to small businesses, women, children, seniors, and others across the nation."

President Obama has said he would veto the other piecemeal funding bills being proposed, which include legislation to refund national parks, museums, the municipal government of the District of Columbia, and veterans benefits. There are no proposals currently on the table to individually refund the CDC, FDA, or other such public health agencies.