By Brian Sladek
I am honoured to have my blog be just one of several covering this topic as part of Signal’s second annual blog carnival on the theme ‘Right to Try.’ Please click here to read what other bloggers think of this.
As a patient, I don’t care about percentages.
According to a recent SEER Cancer Statistics Review, the odds of me receiving my first non-hodgkin lymphoma (NHL) diagnosis at the age of 20, in 1999, were approximately 1 in 5,000. The odds of me being diagnosed with the same diffused large B-cell NHL almost exactly ten years later were even less.
Finally, my third NHL diagnosis, which came six years later this past June, lowered my odds even more.
Given the immense amount of toxic treatment I have received over the past 16 years – six rounds of CHOP, five rounds of R-ICE, not to mention the high-dose chemo I received before each of my three stem cell transplants – I face the real possibility of one day having my oncology team collectively shrug their shoulders because we’ve exhausted all possible treatments.
Thankfully, I am in remission from my last allogeneic stem cell transplant in October 12, 2017. I have an amazing family, a beautiful supportive wife and three- and-a -half year old twins. I have so much to live for at only the age of 37.
But I face the reality that one day, I may get pulled into the soundproof consultation room that most cancer clinics have to receive the bad news from my doctors that there is nothing more for me to do besides get my affairs in order and enjoy what will be left of my short life with my family.
If there was a treatment, a drug, that had a chance to extend my life, then damn the percentages. I want that drug. On behalf of my family, I would lie, cheat and steal to get access to it.
Patients don’t care about the political ping-pong that comes with the territory. Some legislators view the Right to Try legislation as a way to circumvent the Food and Drug Administration (FDA), or cut out the middle man, if you will. It is presented to the public as cutting out the bureaucratic red tape between the drugmaker and patient. The opposing belief is that the FDA has done a great job vetting what a safe treatment is versus a comparatively untested one. In fact, they argue, the FDA gets the majority of these last resort patients their requested drugs through various compassionate care programs.
At the end of the day, the decision of whether or not a patient should seek to procure a drug or treatment that has not passed the final steps to be approved by the FDA should be between that patient and their doctor.
In most cases, if a patient is considering a last resort treatment option, they have already suffered through innumerable, painful side effects from treatments that couldn’t keep their disease at bay. Taking a chance on an unproven drug is not a chance at all. It is hope:
Hope to see another grandchild’s birthday
Hope to reach a 10-year wedding anniversary
Hope to dance with your daughter at her wedding reception
Hope that this treatment can buy time as we hurtle towards new, durable treatments that may present a cure.
It is exactly that hope that should be afforded to patients that qualify for an appropriate compassionate care program.
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