The Right to Try law was signed by President Trump on 30 May 2018. Whilst there are bad and a just plain ugly sides to the Law, it is appropriate to not forget that there is also a good side to the Law.
For anyone with a rare disease, or a terminal illness, hope is priceless. I remember the film with Queen Latifah that came out some years ago [ref Last Holiday 2006]. In the film Queen Latifah’s character Georgia, is told that she has a terminal illness (a brain tumor). What did she do? She booked an extremely expensive holiday in a 7 star hotel in a beautiful location. Her character was determined to try all the things she had always wanted to do. In the process of doing this, she had a wonderful time, and her life derived hope from all of these wonderful new experiences.
The good thing about the Right to Try Law is that it gives hope to those who often have little to hope for. For someone with a terminal illness, hope can be all that is left to hang onto. When the physician utters the words, “We’re sorry. There is nothing else we can do for you”, hope can be priceless.
Lorna Speid, Ph.D., is President of the Board of Directors of Putting Rare Diseases Patients First!(R) a 501 (c) (3) non profit that seeks to provide actionable information to patients with rare diseases about the clinical trial and drug development process, so that they can be empowered.