High school sweethearts Keith and Mikaela Knapp’s blog is still up, even though it hasn’t been updated for several years. The final post, from April 2014, features two photos of Mikaela.
“I hope you enjoy these final pictures of Mikaela’s unfailing positivity,” Keith wrote. “These were taken just a few days ago, with Mikaela making funny faces while wearing her friend’s glasses.”
In the photos, Mikaela sports a goofy grin and bright eyes that don’t seem to fit with her shaved head, gaunt cheeks and hospital gown.
Her cheerful demeanor doesn’t fit with the news Keith shared in the post either—that the couple’s efforts to convince a drug company to allow them access to experimental treatments had been unsuccessful, and that Mikaela was now in hospice.
A day after Keith wrote the post, Mikaela passed away.
The story might have had a happier ending if outdated regulations and miles of red tape hadn’t kept Mikaela from getting treatment.
Not So “Compassionate Use”
Keith and Mikaela both grew up in Northern California. The two met in high school and married shortly after they graduated college. But just two years later, Mikaela was diagnosed with an extremely rare form of kidney cancer.
By the time Mikaela’s cancer was detected, it was already Stage IV. The couple quickly ran out of FDA-approved options, and because the cancer was so advanced Mikaela wasn’t eligible for any clinical trials.
The couple’s last hope was “compassionate use.” In theory, this FDA policy is supposed to allow terminally ill patients access to treatments that haven’t received final approval. In practice, the policy doesn’t provide much hope.
Getting approval for compassionate use is an incredibly complicated and time-consuming process. Drug companies are also reluctant to allow compassionate use because there’s little protection from lawsuits or repercussions that could derail the FDA approval process.
Desperate for a chance, the Knapps launched a blog and a petition, begging the three drug companies with promising treatments for access. The couple gathered hundreds of thousands of signatures, countless media stories and some promising conversations with drug companies.
But access to a potentially lifesaving treatment never materialized.
The Need for Right-to-Try
The Knapps’ story is just another example of why federal right-to-try legislation is so desperately needed.
The legislation would remove some of the hurdles that keep drug companies from providing experimental treatments to terminally ill patients. In a recent blog post, we shared why Matt Bellina, another terminally ill patient, is such a passionate advocate for right-to-try.
Bellina says right-to-try will help encourage drug companies to provide that access by removing potential repercussions for manufacturers if terminally ill patients suffer side effects or die while on the medication.
“It’s not that they are heartless and don’t want to, but they are afraid,” he told the Chicago Tribune last year. “The company could always say no, but this bill makes it a lot easier to say yes.”
If you agree it’s time to give terminally ill patients another chance at treatment, send an email to Congress telling them to support right-to-try.