If you’re a parent with a seriously ill child and you have exhausted traditional therapies, your last resort may be enrolling your child in a potentially lifesaving clinical trial. Typically, traditional therapies are covered by insurance, but clinical trials are often not. Therefore, some families must forego experimental treatments because they cannot afford the cost.
In fact, clinical trials often have a waiting list of patients who have consented and enrolled but cannot cover the cost of participation. This, of course, is devastating for those families, but it has another effect as well: it slows the progress of research. Medical innovation only happens when clinical trials move forward to bring new therapies to market. Trials that might move quickly can stutter along for years if they don’t have enough participants.
Speeding therapies to cures was a founding principle of the National Stem Cell Foundation. NSCF has always covered the uninsured costs incurred by patients participating in clinical trials NSCF supports. But all trials don’t have that advantage, especially in the early stages. Nearly every day, we get at least one phone call from someone asking for funding to participate in a clinical trial.
In 2018, NSCF established a fund at Duke University’s Pediatric Blood and Marrow Transplant Program to help children with rare diseases participate in clinical trials. The fund focuses on filling the gap between what families with limited means can pay and the expenses health insurers require Duke to collect, including deductibles, copayments and some medication costs. In this first year, our partnership with Duke has allowed 34 patients under the age of 10 to participate by covering these expenses their families would have found insurmountable. By covering the gap in funding, NSCF is speeding therapies to cures and helping patients at the same time.