PH is rare; access to pulmonary rehab shouldn’t be
With too few rehabilitation programs, patients are underserved
Do you know about pulmonary rehabilitation? Maybe you’ve participated in a few sessions or you have a loved one who did. I didn’t know about these programs until after I was diagnosed with pulmonary hypertension (PH). I also didn’t fully appreciate the hurdles that prevent some people from accessing this valuable care.
Pulmonary rehab is a “supervised exercise program” meant to strengthen muscles and boost the quality of life for people with lung-related chronic illnesses and diseases, including many with PH. Participating in a 12-week program was one of several items on my post-diagnosis to-do list, after I was discharged from the hospital in March 2016. If I couldn’t return to my semi-regular running, this program sounded like the next best thing to springboard into some physical activity again.
My initial excitement dissipated quickly. Little did I know that pulmonary rehabilitation programs were rare in their own way.
A respiratory program coordinator reached out to begin the approval process required to get on a waiting list for an available spot. Were these prescribed exercise programs competitive? Was this wait like the stories I’d heard from friends who have to enter lotteries to get their kids into the best preschool or kindergarten? Apparently. In fact, after I was slow to respond to an email at one point during this process, the slot meant for me went to another patient.
What gives with the rehab exclusivity?
A month and a half later, on a hot day before Memorial Day weekend, I took the Washington, D.C. area Metro to a second Metro line to get to the bus that would drop me off across the street from a hospital in Maryland, all to reach my first session. I wasn’t sure what to expect going into this experience. I didn’t love the commute, and I certainly didn’t expect to be sweaty from exerting so much energy before arriving for an appointment to exercise to gain strength as part of managing life with a chronic and rare lung disease.
My pulmonary rehabilitation program took place on the lower level of the hospital, in a room filled with various exercise machines and other workout paraphernalia. A quick scan of my surroundings confirmed that I was the youngest patient there by at least two decades, and back then I was in my early 30s. A respiratory nurse took my heart rate and oxygen saturation numbers before walking me through the stations of the exercise program.
Each session included the use of two conditioning machines, free weights, and a treadmill for walking. My amount of time on the treadmill would increase as I built up muscle strength and endurance and moved through the program. I was expected to walk for 30 minutes by the 20th session!
After a few weeks, I opened up and befriended some of the regular respiratory nurses who staffed the program. When I mentioned my commuting struggles, the nurses reinforced the limited number of spots in their program and the larger challenge to meet patient demand because of the few pulmonary rehab programs in the region.
A large underserved population
While I could commiserate with them at the time, in reality I was in a much better position, living in an urban area, than others in the U.S. who face barriers to this care.
A recent PH News article, “Pulmonary rehab sites more than an hour away for US rural residents,” calls attention to a new study about the broader lack of access when it comes to these rehabilitation programs. The article states, “More than 14 million people — mostly living in rural and sparsely populated areas in the country’s western and midwestern regions — need to travel more than one hour to reach the nearest program.”
Traveling for appointments can be a burden for those of us living with PH or other chronic illnesses, because of mobility issues, medical equipment, or symptoms such as fatigue or shortness of breath. If my commute had been even farther, I’m not sure I would’ve regularly attended my three-times-a-week sessions, despite how beneficial the exercises are to my health and lung condition.
After my care team suggested I consider another regimen of pulmonary rehab this year, I was inspired to raise awareness about this barrier to care as part of the broader advocacy efforts for Rare Disease Day, on Feb. 29. Given how “transformative” pulmonary rehabilitation can be for people with PH and those across chronic illness and disease communities, access issues shouldn’t make it seem like such a rare luxury.
Follow me on X (formerly Twitter): @mnaple.
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
About the Author
Comments
Patrict
This is terrible I have to travel 2 hours to rehab to sick to go
Colleen C.
Could not agree more Mike! Thanks for raising awareness on this!