In 2017, Shaun Downs was diagnosed with a rare form of pancreatic cancer and was given a year to live. With no known cure, Shaun quickly exhausted all available treatment options. His situation is bleak.
Stories like Shaun’s are tragically common. According to the Pew Research Center, as of 2006, nearly 42% of Americans have a friend or relative with a terminal illness or who is in a coma. Among the most common terminal illnesses is cancer, which accounted for over 600,000 deaths in 2017.
Fortunately for Shaun and others in similar situations, new legislation offers hope.President Trump recently signed legislation into law which would grant terminally ill patients like Shaun access to experimental drugs before they are approved by the FDA. This law, frequently called “right-to-try,” significantly curtails the FDA’s authority by placing decision making power in the hands of drug providers, physicians, and terminally ill patients.
This unprecedented regulatory shift is facing considerable criticism. Since the bill was passed, it has been referred to as a “cruel joke,” a “sham,” and “false hope.” Others have asserted it is “tailored to undermine public health” and that it “wasn’t worth passing.”
Those who defame right-to-try are quick to defend the FDA, insisting its current role protects consumers. Even in life-and-death situations, its opponents maintain should be made.
But how helpful has the FDA been in assisting the terminally ill?
In her book, “The Right to Try,” Darcy Olsen finds over 25,000 patients with terminal cancer die annually while waiting for the FDA to approve potentially lifesaving drugs. It seems the FDA provides its share of “false hope!”
Even when the FDA grants exceptions to its rules through policies designed to help the terminally ill, it still falls short. Its Compassionate Use Program, which grants terminally ill patients access to experimental drugs, only provided access to 9,000 patients from 2005 to 2014. It’s a start, but a far cry from what is needed.
It is hard to imagine what “undermines public health” more than stubbornly supporting government agencies and previous policies which continue to fail those they intend to help.
More importantly, defamatory comments like these tend to overshadow the true message and intent of right-to-try laws: provide the terminally ill more options to prolong their lives. It is far from a guarantee, but it provides hope for families in dire situations.
Why wouldn’t he? For him and his family, trying experimental drugs are well worth the risk. How could this be a “sham” considering the bleak alternatives?
Perhaps nobody can answer this question better than Shaun’s wife, Raquel. As she remarked, Theyre [those against right-to-try] not the ones going through this. Theyre telling us no but hes the one sick. Hes the one suffering here at home. I get to see him sick. Im the one that has to take care of him, but they dont understand that.
With national right-to-try legislation, Raquel and many in her situation have a rare reason to be optimistic. For them, and others who hope to help the terminally ill, it is well “worth passing.” Indeed, it’s worth celebrating.