Maddie Major, 8, has leukemia. Image: A still from the CBS news report.
Maddie Major has leukemia. She's 8 years old, and she's had it recur four times. The clinical trial she now needs, having exhausted all other options for treatment, cannot be approved by the FDA because the FDA has been shut down, along with the rest of the federal government.
“I am completely blown away by how callus and how carelessly they’ve just kind of used us as their pawns to push their own agenda,” says her mom. From a Baltimore CBS TV affiliate's report:
Maddie’s cancer, pre-B cell ALL, is curable in 90 percent of the cases. Her daughter is in that 10 percent category. Six months ago, she went through a clinical trial that worked. Because of her relapse, she’s scheduled to have it again. Now, it’s up in the air.
Another patient affected by the halt in new clinical trials is Leo Finn of Cape Cod, a 48-year-old father of three waiting for approval on an experimental drug for his metastatic bile duct cancer.
Finn said he was diagnosed with terminal cancer in February, after tumors had spread to his liver and bones. At first, doctors tried standard chemotherapy drugs, but they shrank his tumors for only a short time.
His Dana-Farber oncologist recommended that he try cabozantinib, a drug approved for thyroid cancer but still experimental to treat other cancers.
But before he could get the drug, the hospital had to launch a clinical trial, because no other patients with his type of cancer are receiving it. But the registration website, www.clinicaltrials.gov, is not able to process new requests.
Maddie and Leo are not alone. Each additional day the federal government shutdown continues is an additional day their cancer treatment is delayed. Does that sound like "non-essential government operations" to you?
Update: Looks like Leo may get to start the trial now, thanks to the intervention of Congressman Bill Keating.
Related on Boing Boing:
"US gov shutdown may mean some kids with cancer won't be treated, CDC's outbreak detection programs also halted"
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