Roughly 16 million Americans have chronic obstructive pulmonary disease (COPD), but only a fraction have access to a lifesaving treatment called pulmonary rehabilitation.
COPD is a family of diseases, including emphysema and chronic bronchitis, that make breathing difficult and worsens over time. The main cause is smoking. Other causes include secondhand smoke and exposure to polluted air, chemical fumes or dusts. There is no cure.
But pulmonary rehab can help after a hospital stay, according to Dr David Mannino, director of the Pulmonary Epidemiology Research Laboratory at the University of Kentucky, in Lexington.
Pulmonary rehab teaches patients to exercise, eat well and use medications appropriately in order to regain their strength. Rehab clinics can also foster socialisation, as COPD patients often feel isolated, Mannino said.
Striking differences in outcome
To learn more, a team from the University of Massachusetts studied data from almost 200 000 Medicare patients hospitalised for COPD in 2014. The findings were published on 12 May in the Journal of the American Medical Association.
Of that group, 1.5% (2 721 patients) began pulmonary rehabilitation within 90 days of leaving the hospital. In total, just over 38 300 patients died within one year of discharge from the hospital.
The difference in the outcomes between those who had rehab within 90 days and those who didn't was striking: Within a year of discharge, 19.6% of the group who did not have early rehab had died, compared with 7.3% of patients who began rehab within 90 days.
"If this were a medication, it would be a blockbuster," Mannino said. "The tragedy is that it's only available to such a small percentage."
Dr Carolyn Rochester, a pulmonologist at Yale School of Medicine in New Haven, Connecticut, examined the reasons why in an editorial that accompanied the findings.
Trying to close the gaps
Rochester noted that doctors are not incentivised to discuss or refer patients to rehab and, even when they do, many don't follow through because they don't know the potential benefits or lack access. The programmes are not widely available, and are severely underfunded, she added.
One group that is trying to close the gaps is the Maryland-based Dorney-Koppel Family Charitable Foundation, which provides startup funding for pulmonary rehab clinics in areas where COPD is common.
Its spokeswoman is Grace Anne Dorney Koppel, who emerged as an advocate for COPD patients after she was diagnosed with the disease in 2001. Doctors told her at the time she had only a few years to live, she recalled. But after beginning pulmonary rehabilitation, everything changed.
"I have not only survived, but I have survived well," she said.
Through their foundation, she and her husband, broadcast journalist Ted Koppel, have established 12 pulmonary rehabilitation clinics across the country and will soon open a 13th. The walls of her office are filled with photographs of graduates from the clinics the couple started.
Increased funding needed
"It is the most gratifying and satisfying thing," she said. "I see lives made almost whole again, and that is why we do what we do."
In her editorial, Rochester said access is key.
She said increased health system funding for pulmonary rehab would be a big help.
Rochester also pointed to the need for a randomised clinical trial that would include younger patients and those who have had long stays in acute hospital or nursing facilities. The average age of patients in the UMass study was 76.9 years.
With the world's attention on Covid-19, Dorney Koppel said her focus is on COPD patients who are highly affected by the disease. That includes the many individuals who may not even know they have COPD, which leaves them vulnerable to contracting the virus.
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