Interview with Charles Hough on His Experience in Participating in an NIH Transplant Study for Sickle Cell Disease
With huge risks, how did you reason with yourself in participating in the clinical study you enrolled in?
It wasn’t easy. My biggest fear was death or degradation of my health. I knew the study was very risky and before I decided to move forward, I wanted to dig deeper into other patient results. I felt like, if I had spoken to other patients who had gone through the study before me then, that would help with my final decision earlier. After I had spoken to three patients who went before me and was set financially, I felt content with moving forward.
I also had to separate everyone’s else opinions from my feelings towards the study. I didn’t want to think about the possibility of all the major risk, but instead, I cleared my mind and focused on completing this study successfully.
How did you ultimately decide to participate in the study?
I knew what I had signed up for but, this was the chance of a lifetime and something I sought after for so long; to be cured of sickle cell disease. Weighing my options I had the choice of living with sickle cell and deal with its complications or go through this study and facing the journey that laid ahead. Both paths had their share of uncertainties but, this was my chance to not only play a significant part in the battle against sickle cell disease but to have a chance at a better quality of life. So I said yes.
How did you prepare for this study?
I had to make sure I financially set to move forward with the study. Losing everything was a huge concern of mine. Luckily my job was onboard and walked me through each step to set up long term disability.
What sort of emotions did you experience before, during, and after the study?
Before the study, I had mixed emotions. I had previously said no to the study because it was in its earlier stage. I wanted to wait for more conclusive results from the study itself.
During the study, the effects of the chemo hit me the hardest. It changed my appearance completely. When I looked in the mirror, I hardly knew who I was looking at. At one point, I broke down from the stress of it all.
After my transplant, initially, my recovery started rough. I was readmitted to inpatient stay twice. Once I got through two readmissions and was able to maintain myself at home, I was kind of scared, to be honest. I had been through so much, and I had so many restrictions that, I didn’t know what I could do outside the hospital and I didn’t want to mess anything up by getting sick again.
What advice would you have for others who may be faced with the difficult decision of potentially participating in a study?
Being cured of Sickle cell has been a dream of mine for a long time. Participating in clinical studies let me play a small part in the overall goal for a cure. My philosophy towards clinical studies is to take an objective approach utilizing current medical technology available today.
I would highly recommend others participating in clinal studies for sickle cell disease. I do understand the stigma behind being tested on in clinical enjoinments but, NIH changed my whole attitude towards studies in general. They set a benchmark higher than any other medical facility I’ve been to and, I’ll stand behind those words. Also, I understand that sometimes we are afraid to try something new, especially if we have a plan that’s already working but, just think about this. Are you being treated for the symptoms/complications of sickle cell or, are you being treated for the cure? I choose for a better quality of life, a life I dream for all sickle cell warriors past, present and, future.
Are you cured from SCD and what's life like after the study?
Essentially yes, because the nature of the study was to modify the first gene in my DNA from a S to an A. Since I was born with the full blown disease, modifying my gene structure to produce half of the amount of sickled red blood cells essentially means that I now have the trait.
On my last visit, my blood results showed that I now produce about 37% sickled red blood cells. I’ll take that any day over the 97% I produced before the study. Life now is great! I feel amazing! The cold doesn’t bother me that much anymore, I haven’t had a crises since my the study. I have although had some minor pains that my doctors has called “memory pain” but that’s it. No major issues! I'm loving life!