New York cardiopulmonary physical therapist Noah Greenspan has launched the Pulmonary Wellness Foundation (PWF), a nonprofit group that provides free online information on a range of prevalent, rare and ultra-rare pulmonary diseases for those who can’t afford to pay for it.
PWF specifically targets patients with pulmonary fibrosis, pulmonary hypertension, and chronic obstructive pulmonary disease, said Greenspan, the focus of an August 2019 feature story in BioNews, which publishes this website.
“Essentially, we’ve organized all of my work from the last 28 years into one place, so you can read my book for free, watch all my previous webinars for free, and listen to my podcasts,” he said. “We’ve also made our 42-day online pulmonary rehabilitation ‘boot camp’ available for free. We decided to do this because so many people need rehab and have no access to it.”
“But for some people, even that $14.99 was cost-prohibitive and meant the difference between rehab and food or medicine,” he said. “I’m not a money person at all, and I don’t believe that money or lack of it should be a reason why people don’t get the care they need.”
The foundation, announced in a press release, says its mission is “to aspire to serve as the world’s most comprehensive and advanced pulmonary wellness hub and community for people living with respiratory diseases as well as their caregivers and loved ones.”
Since its inception, Greenspan’s Pulmonary Wellness & Rehabilitation Center in midtown Manhattan has conducted more than 100,000 cardiopulmonary exercise sessions.
Fundraising will be essential
Inaugurating the 501(c)(3) charity will allow Greenspan to raise money through philanthropy. He said the foundation’s fundraising target is $2 million over the next 18 months, an amount needed to meet all of its educational and research targets.
“Our society focuses on medications and procedure-based treatment,” said the Brooklyn-born physical therapist. “But the fact is that for many people with respiratory or cardiovascular disease, self-care — eating right, getting exercise and managing your stress and anxiety — goes a very long way.”
“What it boils down to is, people aren’t going to get more personal care over time; they’ll get less,” he said. “There will be more telehealth and alternative methods of healthcare, and people will have to find innovative ways to help themselves get better.”
Teresa Barnes, who chairs the PWF patient advisory board, says that when it comes to pulmonary rehabilitation, “there’s a great, gaping hole of need” in the United States.
“Pulmonary diseases — a leading cause of death — are chronic or deadly, sometimes both. And they aren’t going away,” Barnes told BioNews. “But the diseases themselves are vastly different. What’s great about this new organization is that not just patients with one type of breathing issue can be helped, but all of them.”
Barnes, who lost five family members to pulmonary fibrosis in the past 20 years, speaks from experience. She helped create and run the Coalition for Pulmonary Fibrosis, which later merged with the Pulmonary Fibrosis Foundation.
“Sometimes pulmonary rehabilitation and lung health get neglected, though not intentionally,” she said. “When you’re dealing with newly diagnosed patients, you’re often trying to figure out how to help them in the initial crisis. And when patients tell us their doctor has recommended pulmonary rehab, we usually tell them to see what’s available in their area — but the organizations don’t usually get involved in that.”
PWF embraces scientific research
Insurance and Medicare have increasingly been excluding some patients from access to rehab, or people aren’t referred quickly enough.
Marcella Debidda, PhD, is the foundation’s chief patient officer. A molecular oncologist, she said PWF will “pave a new path for healthcare” by making education and care free and accessible to everyone, regardless of geographic location or ability to pay.
“The hope here is to obviously have an impact on patients, but also to set an example for other foundations that get so much funding,” she said. “We will also do research so that we can prove scientifically that what we’re giving to patients is good for them.”
Pulmonologist Robert J. Kaner, chair of the new foundation’s scientific committee, runs the interstitial lung disease program at New York’s Weill-Cornell Medicine.
“Based on our experience, we know that pulmonary rehabilitation is very beneficial to patients with advanced lung disease. But there isn’t a large body of research that supports our experience,” Kaner told BioNews.
“We’re hoping not only to make pulmonary rehab available to a much larger number of people, but also to establish some objective measures that will document the benefits they receive, and hopefully disseminate that information through the scientific literature,” Kaner said.
PWF also plans a series of informative webinars this year. These include a Feb. 12 talk by Steven Nathan, MD, of Virginia’s Inova Fairfax Hospital, on lung transplants; a Feb. 19 lecture by Kathleen Lindell, PhD, of the University of Pittsburgh, on palliative care; and a March 4 presentation by Donna Wilson, RN, of New York’s Memorial Sloan-Kettering Cancer Center, on the importance of exercise.
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