April 24, 2024
Daniel Grimm doesn’t let his respiratory illness slow him down from everyday activities or making a difference. After 41 years as a truck driver and a diagnosis of a rare lung disease, he decided to start a new career in patient advocacy.
Grimm lives in Buffalo, New York, and has the rare lung disease, Alpha-1 Antitrypsin. The condition is uncurable, genetic, and affects roughly 10,000 people in the U.S. It often leads to COPD, emphysema, and cirrhosis of the liver, so to help combat the progression, Grimm gets weekly plasma infusions.
“I got involved with advocacy after I enrolled in a clinical trial at Columbia University in New York. The doctor that oversaw the trial, Dr. Jeanine D’Armiento, was also the Chairperson of the Alpha-1 Foundation and pointed me to the organization and asked if I’d be interested in being involved, and that’s how it all started,” said Grimm.
For the last three years, he’s been working with the Alpha-1 Foundation on various advocacy efforts to get the plasma infusions he needs to be covered under Medicare. He has visited more than 50 legislators in Washington, D.C., and New York.
“I find it very rewarding, and I want to be the face and voice of those individuals who can’t travel and attend the meetings with the legislators. I’m in pretty good shape, thankfully, and I want to do this for the betterment of the community,” said Grimm.
He’s also worked for six years with a sister organization to the foundation called Alpha-Net to help patients one-on-one. “I spoke with about 150 patients a month in my role, which gave me a different perspective and motivation on advocating for respiratory illness issues. Many people I interacted with had lessened lung function, were ill frequently, and/or were waiting for a lung transplant. Every day was a struggle for them, from going to the bathroom to a doctor’s visit to a visit to family. The fear of not being able to breathe if your oxygen tank ran out was a constant stressor.”
Grimm also understands the importance of the SOAR Act and having a respiratory therapist available to come into the home to educate patients, “I went to pulmonary rehabilitation last year after a bout with the flu and COVID and worked with a respiratory therapist throughout the process. It truly helped me improve and get back on track again. I’ve talked to so many people who, if they had regular access to an RT to come in and help educate them on equipment or just to check in, their quality of life would be improved immensely.”
During his visits with politicians, Dan has learned a few helpful tips for changing the narrative, “I try to be quick and to the point and highlight that Medicare payments for things like infusions, supplemental oxygen, virtual pulmonary rehabilitation, or an RT visit are non-partisan. If you can make it personal to a politician and it resonates, it will change their thought process. It’s also important to highlight the day-to-day, basic issues people struggle with – things like the true weight of having to carry more than one 10-lb oxygen tank and figuring out transportation and whether your tank will last. Or how just going to grab some groceries can be a scary and long ordeal for someone with a respiratory disease. Breathing is the most basic thing, and it shouldn’t be a struggle.” Through Dan’s efforts and those he advocates on behalf of, he’s had 15-20 congressional representatives sign on to bills! Thanks, Dan, for making an impact!
