Despite this, pulmonary rehabilitation is available to only a sliver of COPD patients who would benefit; Tom would be disappointed! Reimbursement to practitioners for this service is unsustainably low. PERF members are attempting to find pathways to improve pulmonary rehabilitation access. PERF Board member Chris Garvey is a national leader in attempts to improve pulmonary rehabilitation reimbursement. An editorial Chris (and I) authored is slated to appear in coming months in the American Journal of Respiratory and Critical Care Medicine (the world’s highest cited pulmonary journal); it suggests a strategy to improve Medicare reimbursement. We also feel that clinical research can drive public policy. We’re active in the debate as to whether promoting pulmonary rehabilitation in alternate settings (for example, in the home) will make things better or worse. Importantly, we reason that demonstrating that pulmonary rehabilitation prolongs life will lead to a wave of demand from patients and health care providers that will improve access. Designing a study to test the hypothesis that pulmonary rehabilitation prolongs life, though, is a daunting proposition. It would require over 2000 participants and take 7 years. PERF investigators, coupled with other scientists across the United States have requested funding from the National Institutes of Health for this study. Wish us luck!
For long-term oxygen therapy, the situation is similar. Tom Petty led a study that almost 40 years ago showed that supplemental oxygen was an essential therapy for COPD patients with low oxygen levels. PERF investigators have participated in studies exploring the role oxygen therapy plays in improving the ability of COPD patients to be active in their lives. Dr. Brian Tiep has invented, and introduced into practice, devices that increase the utility of ambulatory oxygen supplies. Yet, funding policies in the United States have had the effect of restricting access to oxygen supplies and education in their use to patients who would benefit. A recent survey demonstrated that patients receiving oxygen therapy often have difficulties with their oxygen supplies. I wrote an editorial this year in the Annals of the American Thoracic Society positing that key questions need to be answered before oxygen policy can be adequately formulated: 1) are we giving long-term oxygen therapy to the right people? 2) do patients adhere to their oxygen prescription? and 3) do oxygen devices work as intended? We’re working on playing a part in getting oxygen patients the equipment and services they need.
PERF is also working hard on its educational mission. Please visit our new, upgraded website at https://perf2ndwind.org. Have you subscribed to PERF’s blog? For over three years now we’ve been providing timely information to the COPD community. Ask your friends to sign up. Go to https://perf2ndwind.org/blog and click on the “join our mailing list” link to sign up for the blog. If you’re local to our research building in Torrance, please come and participate in our ‘PERF Better Breather’s Club’, which hosts seminars every month or so. We had some fascinating topics this year including a bronchoscopic exploration of the lungs to a live demonstration of a Mediterranean-diet recipe. These seminars are open to all and also provide an opportunity to meet with our doctors and researchers over coffee and cookies. Thanks to Harry Rossiter for keeping this program running. If you sign up for the blog you’ll receive an announcement of upcoming seminars.
The Rehabilitation Clinical Trials Center is humming with activity. Here are some of the projects ongoing or about to get started:
