On May 30, 2018, the President of the United States signed the “Right to Try” bill into law and it seems as though there are still more questions than answers about how critically ill cancer patients can participate in treatment under the new regulations. So, I found myself going on a hunt for information that may help to clarify this matter.
After all, it is our individual life and no one else should be in a position to tell us how we should live it or when to give it up.Barbara Jacoby
I first became aware of this legislation when I came across an article written by Michael Becker (author of “A Walk With Purpose”) who is a biotech executive and a Stage IV cancer patient. In the article, he has laid out the obstacles that are being faced by the Commissioner of the Food and Drug Administration in trying to enact the law in accordance with the intentions of the legislature.
I then came across an extremely interesting article that provides a thought-provoking look about why we even need such legislation that is based upon the historic and political background of medical treatments in this country. While there are always two sides to every story, or in this case, the potential outcomes that will result from this legislation, the most important one is that a decision by and for a patient has landed where it should and that is in the hands of the patient.
Finally, I have included a link to an article that has been designed to explain the law to patients and how this will work outside of the previous constraints that governed such experimental medicines outside of clinical trials through the Food and Drug Administration’s expanded access program. At this time, these are the very best guidelines that I have been able to access.
Most importantly, this legislation has allowed for terminally ill patients for which all other options have been exhausted to participate in how they wish to move forward. For my father, he decided to stop treatment after the first few chemo treatments that he received. For another very special person that I knew, she chose to keep her cancer-filled breast rather than have a mastectomy. For another lung cancer patient that I knew, he did not have the medical insurance to cover advanced treatment so he was not given any real options other than to forego treatment unless he wanted to go deeply into financial debt for his family on the outside chance that something might work.
While there are points to consider on both sides of this issue, the greatest focus should always be placed on the individual’s choice. Therefore, it is incumbent upon us to provide as much information about options, potential outcomes, etc. to patients and to their medical providers in order to give each person who faces a terminally ill diagnosis to have the opportunity to have the “right to try” a treatment that might, just might, make a positive difference in their treatment.
Therefore, a patient who wants to participate in such treatment should arm herself, or himself, with as much info as possible and have a real discussion with the best team of oncologists available to them and make a decision on moving forward in the direction that is best for the individual. After all, it is our individual life and no one else should be in a position to tell us how we should live it or when to give it up.