After five years of participating in the PIONEER clinical trial, my time spent at the Huntsman Cancer Institute is over. The first two years I traveled from my home in Louisiana to Utah every month. Then I was switched to every three months. I recently completed my last visit. I left in tears, with pictures of me and my doctor — and a new outlook on medical care.
The right care and respect makes all the difference
At the Huntsman Cancer Institute, for the first time in my life my indolent systemic mastocytosis (SM) was treated properly. The respect I was given there was top-notch. Not just from my medical team, but from every single person that I met in that hospital.
The only good thing about the trial being over is that I got to hand their phone back to them. Every single night for five years I had to use it to enter my symptoms. It rang at 7 p.m. reminding me to fill it out. Every night. Five years. I was happy as could be about returning that phone.
I thought I would be a nervous wreck about my future, but of course my ISM doctor gave me a choice of oncologists/hematologists a little closer to me, all lined up for me to choose where I wanted to be treated. I chose University of Alabama Hospital at Birmingham (UAB). But my doctor did not stop there. His team transferred my medical files at once, and I had an appointment scheduled for June before I even made it home from the airport.
Before I left I picked up my prescription from the pharmacy there, which was being billed to my insurance for the first time. Of course, they had already taken care of any out-of-pocket expense with the Blood Cancer United grant the team had helped me get prior to my last appointment. I also had a mail order pharmacy company set up to deliver my prescription monthly until June, when my care will be officially transferred.
A hopeful future
UAB is a major center for clinical research and the home of some of the top medical programs in America. I will have a six-hour drive to see my new care team, but I can make it. And I am excited about this new beginning for me.
I do not fear the future anymore as far as my rare disease treatment goes. When you are taken care of properly and treated with dignity, it changes your entire outlook on medical care. I have no need to fear my future care.
My only hope now is that others living with SM get the same great care that I am receiving. Prior to the Huntsman Cancer Institute, my life living with SM was terrible. My future was unknown. I had almost no hope. I was living with a rare disease that no doctor near me knew enough about to even run the proper tests on me. I never want that fear to return.
This is why I am doing my best to advocate for others living with rare diseases. I do all I can do as a person, but I join with many other rare disease patients and caregivers who are so enthusiastic and awe-inspiring. I attend virtual monthly webinars and take part in events like Rare Disease Week on Capitol Hill, and Rare Disease Day. All I want is our voices to be heard and every rare disease patient get the care they deserve.
I also want to say that if you are ever offered to take part in a clinical trial, consider doing it. I will be forever thankful that I had this opportunity. I have zero regrets.
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