HJNO Sep/Oct 2020

HEALTHCARE JOURNAL OF NEW ORLEANS I  SEP / OCT 2020 25 Are you seeing promising results at your facility for either Right to Try or expanded access? Matrana We have used expanded access programs to gain access to life-saving thera- pies for several patients. I am not aware of a situation in which a patient has successfully used Right to Try, since we have usually been successful in getting patients access to drugs through expanded access and compassion- ate use programs. On a related note, the Louisiana legisla- ture recently passed a bill for patients with advanced cancer whose tumors are driven by specific underlying mutations. The bill mandates insurance coverage for thera- pies which specifically target these muta- tions (regardless of whether the therapy is approved for the patient’s tumor type), in cases where patients have exhausted other approved options. The Louisiana CancerAd- vocacy Group (cag-la.org ) was instrumental in passing this progressive precision medi- cine law. What resources would a physician use to stay up to date on expanded access and Right to Try options/successes? Matrana Pharmaceutical companies them- selves are probably the biggest source of this type of information for physicians. While commercial drug reps and salespeople are usually barred from discussing experimen- tal treatments, all pharmaceutical compa- nies have medical science liaisons who are usually trained medical professionals who can provide a wealth of information and ac- cess to these types of therapies. How do you know when it is time to stop the race and let the inevitable progress? Matrana With newer, better therapies, many patients with terminal diseases like cancer are living longer lives with fewer side effects. But there comes a time for every patient with a terminal illness when shifting fromaggres- sive therapies to a greater focus on quality of life and comfort is necessary. This is a largely a personal choice made between a doctor and patient considering many factors, in- cluding a patient’s own quantity vs. quality of life values. We are integrating supportive care services and palliative care earlier in the terminal illness journey, making the transi- tion from aggressive treatment to comfort care a much more integrated and gradual process. Certainly, when a patient’s overall performance status declines to the point that they are no longer able to perform basic functions of daily living like caring for them- selves, it is time to forgo further aggressive treatment options. In your experience, does this usually come from the patient or the physician first? Matrana In patients with terminal diseases, I make it a point to discuss the incurable na- ture of the patient’s disease at our first vis- it or consultation. I want to be upfront and honest, so everyone is on the same page. As we continue along sometimes for months, or even years together, I get to know my pa- tients very well, and get to learn about their individual values and wishes. In this way, decisions are usually not made in an all-or- none fashion, but instead more collabora- tively and gradually over time. In morality curves there is often an inexpli- cable tail. Is there a commonality you see in those who are in the tail? Matrana Not generally. Some patients mi- raculously defy all the odds, which is won- derful. Often, we can’t really explainwhy. But I suspect a lot has to do with the underlying biology of their disease—the often mysteri- ous molecular drivers that cause their prob- lem in the first place. Some patients just have a better, slower disease than the rest. We’re doing a ton of research in medicine to un- cover the genetic and cellular causes of dis- ease so that we can develop new and better treatments. n “Terminal patients have the right to take the path less traveled in pursuit of hope. I’m hopeful that expanding access to possible treatments and cures continues to save lives.” -U.S. Senator John N. Kennedy Co-sponsor of Right to Try Act