Jesse’s Clinical Trial Experience
In 2017, I became involved in a clinical research trial through Medical College of Wisconsin for benign cutaneous neurofibromas. Being a part of a research trial was driven by the lack of research and progress for neurofibromatosis, as well as a desire to assist the NF community with moving forward in innovative ways. At the time, it was convenient for me to take part in the study as it was one of a few trials I qualified for and the appointments/treatment took place on my work campus. Since this trial targeted the increasing cutaneous neurofibromas on my skin (mainly trunk/abdomen), it began to provide me hope for the future of NF treatment.
Clinical drug trials are free of charge to participants. With the increasing costs of healthcare, being able to be a part of these trials without extra charge is extremely relieving as a patient. In my personal experience, the average cost for surgery has been about $36,500 prior to insurance. This is not including the hospital bill of nearly the same amount. If the clinical trials get approved for the healthcare market, it will expand treatment options and help create more cost-efficient ways of treating this medical condition.
In addition, I unexpectedly moved out of state during my participation in this trial. Instead of having to remove myself from the trial, funds available in the research group made it possible for the Medical College to cover the costs of my travel back for follow-up appointments. This significantly reduced my financial stress and assured me that I would be able to fulfill my commitment to the study without having to pay to participate. We are entering stage 2 of the trial at this point and while I am unsure of the cumulative results of the trial, I have seen a difference in the growth of treated neurofibromas in my own participation. I am thrilled at the potential this study provides in future non-surgical treatments of troublesome cutaneous tumors.
All of this was made possible by funds from various sources, including donors. I am so thankful that financial resources are available for continued participation in this study. I look forward to the future of NF research and treatment so that the quality of life of those living with NF, including myself, is improved.
I would very much like to participate in clinical trials of medication to reduce the size or growth of NF tumors on the skin. I have NF1 and have hundreds of tumors all over my body. I live in Virginia.
Susan, The best way to find out about clinical trials is to go to http://www.clinicaltrials.gov. Also, if you have doctor who is experienced in NF you should let them know of your interest. You may also look into having some of the fibromas on the skin removed.