Hope for Patients with Terminal Diagnosis
I have been a patient advocate for over 10 years, at the national and state levels. I often engage with legislators and medical researchers and advocate for legislation that improves treatments for patients suffering from rare diseases. Most importantly, I share the stories of these patients and their urgent need for medical treatment.
Approximately 30 million people in the U.S. have rare diseases. The vast majority of these conditions, such as ALS, have no cure. It is heartbreaking to know that all childhood cancers are considered rare but are on the rise, while FDA regulations often bog down research.
On Aug. 20, I had the incredible honor of being at the State House to witness the passage of N.H. HB 701, known as the Right to Try Law. This law removes liability barriers that previously discouraged the use of experimental treatments, enabling physicians to waive certain civil liability risks.
Notably, this law makes N.H. the first state to permit patients and doctors to conduct remote prescreening via telehealth and sign consent forms remotely. It lifts the burdens that patients and physicians encounter when they are willing to try new and experimental treatments. The law honors former State Representatives John Lewike and Michael Yakubovich, who are both battling life-threatening conditions.
Thank you, Governor Ayotte, for your effort to tackle a very complex issue that has left many patients in N.H. without a lifeline. I am hopeful we will see some life-saving progress.
Elizabeth Shannon
Wolfeboro, NH