Most Nebraskans remember when the Ice Bucket Challenge started three years ago. On television and social media sites, we watched entertaining videos of people of all ages pouring ice water on themselves and challenging their friends to do the same. Some of the videos made us laugh, others brought tears to our eyes, but they all highlighted ALS, also known as Lou Gehrig’s disease, a terrible terminal illness.
A neurodegenerative disease for which there is no treatment to stop or reverse its course, ALS is truly heartbreaking. Those who suffer from it lose the ability to move, eat, speak and even breathe. An American woman named Trickett Wendler fought and lost her battle with this disease, but her advocacy for important legislation lives on and will give hope to others confronting the horrors of ALS and other sicknesses.
“Right to Try” was an issue that was very dear to Trickett’s heart. She traveled to Washington, D.C., to meet with her representatives about a bill that would give Americans facing terminal illnesses the right to try experimental drugs before those treatments receive approval from the FDA. The wait for new treatments often takes years and there are patients who simply don’t have that time.
Sen. Ron Johnson (R-Wisc.) was moved by Trickett’s story and introduced legislation called the Trickett Wendler Right to Try Act. The bill gives hope to families affected by terminal illnesses who have nowhere else to turn. I was proud to cosponsor this legislation and see it pass the Senate this summer.
The Senate Right to Try bill allows those who have undertaken all other treatments the option to try therapies that have successfully completed the phase I clinical trial by the Food and Drug Administration.
The bill also creates a streamlined process for patients and includes safeguards for all parties involved in using and applying the not-yet-approved therapies. First, patients must find a doctor and medical institution willing to try the treatment. Next, the doctor must contact the pharmaceutical company to ask permission to test the treatment. Finally, the patient must grant consent after being informed of all the potential risks involved.
Watching a loved one struggle with a serious illness or face the final stages of life is devastating and stressful. I am also backing bipartisan legislation called the Palliative Care and Hospice Education Act (PCHETA). This act aims to provide comfort to patients and their families facing illnesses like cancer or Alzheimer’s. Through increased education, training and incentives for physicians providing this type of care, Americans can receive better care during these very difficult circumstances.
Almost half of those diagnosed with Alzheimer’s, or other forms of dementia, will need to receive hospice care. However, according to The Alzheimer’s Association, “less than half of surveyed nursing homes have some sort of palliative care program.” This kind of care, especially for people suffering from advanced dementia, focuses on improving the patient’s overall quality of life by controlling and relieving symptoms, managing pain, and limiting stress.
The bill will provide grants and awards to medical schools and teaching hospitals to train instructors to teach palliative medicine. PCHETA would establish workforce development fellowships for doctors, nurses, social workers and chaplains. It will also award nurses, clinical social workers and pharmacists who agree to teach or practice palliative treatment. Additionally, the bill will use existing federal programs to emphasize nurse retention and education regarding palliative medicine.
In the Senate, we are working together to bring hope to those fighting illnesses by opening up ways to try potential miracle cures for the terminally ill and helping those afflicted with Alzheimer’s or dementia.