My Fight For Zelboraf

Zelboraf is a drug that is approved in Canada for Melanoma. There have been trials that show positive signs with patients afflicted with other types of cancers, as well.

After exhausting all other treatment options, Zelboraf was going to be the last drug I try. As with some of the other drugs, special authorization was required for the insurance company. Even though I had been denied coverage for other treatments, there always seemed to be a way to access it. Most drug companies have patient assist programs for a period of time or for a specific dollar amount. However, that wasn’t the case for Zelboraf and it was very expensive.

My doctors first began writing letters to my insurance company in May of 2014, knowing that I would be needing this drug soon. Letters were also written to the provincial government to no avail.

After months of constant rejection, it became apparent that this wasn’t going to work.

Unfortunately, even though there was literature that Zelboraf proved to be an effective drug for BRAF positive Erdheim-Chester patients, it still wasn’t considered a covered illness. For that reason, I was declined at every level.

My best Friend along with a few other people banned together on my behalf to do everything we could to get this drug approved. We had weekly strategy meetings and had a plan of action put into place. I was so overwhelmed by all the time and work my loved ones put into this. I felt like my life really mattered. If I ever thought for a minute that I didn’t have fight left in me, the care and kindness from these people changed that.

We started a petition, New Brunswickans wrote over 300 letters to our Minister of Health on my behalf. I did three interviews on ATV news and we planned a rally in front of our legislature with reporters scheduled to be there. It became a full-time job. Strangers who didn’t even know me were helping! It seemed so unfair that one cancer would be covered over another. I could understand if it was a drug that was not already approved in the province by Health Canada, but it was.

After an exhausting 18 months of perseverance and never taking NO for an answer and countless phone calls and meetings with politicians, the phone call finally came in October of 2016. This drug was going to be covered and I would be able to continue my fight. I remember crying and the lady on the phone telling me that ECD was now going to be listed under the drug Zelboraf. We not only changed things for me, but for others in the same position.

That news alone made all of our efforts worth it.