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"
A new report out today from the Centers for Disease Control and Prevention says cancer is now the leading cause of death in California and 21 other states, surpassing heart disease. Back in the early 2000s, only Alaska and Minnesota lost more lives to cancer than heart disease. And back in the 1950s, heart disease […]
Scientists are recruiting thousands of women for a large clinical trial to find out if weight loss should be prescribed as a treatment for breast cancer in some patients. The trial will put obese and overweight women who are 18 and older and recently diagnosed with breast cancer on diets and track exercise to see […]
Colombia wants to produce Novartis’s leukemia drug imatinib under a compulsory license, something it is allowed to do under its trade agreement with the USA, to bring the price down from $15,161/year (double the annual average income) to prices like those charged in India ($803/year).
From self-driving cars to stock market predicting software to the recommendations you get on Amazon and Netflix, machine learning is at the core of modern technology. You could find yourself building technology that is literally changing the world with the skills you’ll learn in The Complete Machine Learning Bundle. This bundle of 10 courses includes 406 lessons that will teach […]
This Python Mega Course will help you learn to code by teaching you to build 10 real-world apps that each highlight a unique use of Python.Job prospects for coders are still growing steadily—and with Python being one of the most popular coding languages out there today, it’s important for job seekers to demonstrate a widespread understanding of the […]
The Atmos R2 may be bigger than the brand’s previously-released vapes, but we argue that in this case it’s definitely a good thing. A bigger heating chamber means more room for packing it full. And the bigger battery means longer, more fulfilling vape sessions. In fact, you can use the Atmos R2 for up to about 25 […]