Since I was receiving my medication for indolent systemic mastocytosis (SM) through a clinical trial at the Huntsman Cancer Institute for the last five years, I never had to run the medicine through my insurance company until recently, when the trial ended. The care team at the Huntsman automatically helped me get a grant through Blood Cancer United to help with copays. (My rare disease falls under the umbrella of myeloid leukemia.) It was such a blessing.
Starting next month, I will be switching to a hospital closer to home. I’ll be traveling to The University of Alabama at Birmingham (UAB). Day one will be with a dermatologist, and then day two with my new oncologist. Until I arrive there, I will not know the frequency of my trips to see my doctor.
Though my new hospital is in driving distance, I’ll still have travel costs. I have already booked a hotel close to the hospital with a patient discount, and it comes to $212 for one night. That does include breakfast and they have a shuttle that will take me to the clinics. There is also a $15 parking fee, which they reduced to $5 for patient bookings. Gas should run me about $100 there and back. Plus, I’ll need to pay for food while I am traveling and while there.
I recently found out that in addition to grants for copays, Blood Cancer United also has grants for travel aid. I would fall under the National Travel Fund, which helps eligible blood cancer patients. I went to their website, and saw this grant is closed. I called and spoke with someone and she explained that this was provided by kind donors and that I should keep checking the site for the grant to open back up and apply at once.
I learned they’re not the only organization that provides travel aid. You can go online and find other foundations that can also provide long-distance travel financial aid, like PAN Foundation, which offers travel grants for patients with rare diseases. There is also HealthWell Foundation, which has a general travel fund that provides travel aid and mileage reimbursement for patients traveling for qualified medical appointments. These are just a few of the ones I am looking into for me.
I did not know this help existed, but I am so thankful for these foundations and the donors that care enough to help. I have always believed that there are more good people in the world than bad. I will always believe that. Even when the news media and social media always want to share the bad in the world and not the good!
I don’t know if I will be able to get one of these grants to help with my first trip next month, but at least I know they are available and that rare disease patients can access this help, and that makes me happy. I am hoping that this article reaches someone like me that did not know travel aid existed. I only mentioned a couple of organizations, but I know there are more that you can apply to.
I have always felt I was facing my rare disease alone, until I joined the clinical trial and was cared for by such a remarkable medical team. I was alone for 20 years prior to my first visit to The Huntsman in Utah. I have not felt alone in almost three years.
When I started writing for Rare Disease Advisor and SM Companion is when I realized how important companionship and support both are. I try my best to share all I learn to help others living like me. I try so hard to be one of those good people I talked about earlier. I hope people see me that way, because I always look for the good in others. I only want to help patients and caregivers navigate living with a rare disease so they do not have to be alone and go through all I did for 20 years.
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