SAN JOSE, Calif., Aug. 31 /PRNewswire-USNewswire/ — Today, pulmonary fibrosis (PF) patient Ellen Foley went to the pulmonary rehabilitation (rehab) program near her home in Middlesex, N.C. At the same time, the Coalition for Pulmonary Fibrosis (CPF) took a stand for her and thousands of patients like her. Soon, Foley may not be able to go to therapy if the Centers for Medicare and Medicaid Services (CMS) are successful in pushing forward a proposed ruling regarding pulmonary rehabilitation coverage that would limit coverage and eliminate patients with diseases like Foley’s. PF has no treatments and no cure and is a disease that scars the lungs and suffocates its victims. It is almost invariably fatal. Most patients live less than three years and the only affective therapy to help them is pulmonary rehab.

The CMS proposed ruling states "because there is not data to substantiate significantly improved outcomes for any other medical conditions, we are proposing to allow moderate to severe COPD as the only covered condition." There is, in fact, substantial evidence that there is significant benefit to PF patients and patients with other respiratory diseases.

The proposed ruling can be viewed at and is file code CMS-1413-P. The docket title is "Medicare Program; Payment Policies Under the Physician Fee Schedule and Other Revisions to Part B for CY 2010."

With patients, like Foley, in mind, the CPF submitted comments to combat the CMS proposal. "This is a case study in the challenges representative of patients fighting rare diseases like PF. Namely, that healthcare coverage for those with rare diseases like PF is materially and negatively impacted largely due to the size of its patient population, a lack of awareness of the benefits of cardiac and pulmonary rehabilitation on these patients, and, frankly, the increased attention typically afforded diseases of higher prevalence, such as COPD, in Federal programs," the CPF included in its comments.

"I need my pulmonary rehab program," said patient Ellen Foley who has less than 50 percent lung capacity remaining. "It has helped me breathe better and helps me try to stay ahead of my disease. Even though I know my PF is getting worse, by going to pulmonary rehab, I can make the most of the lung function I have left."

Even though Congress passed a national coverage policy for pulmonary rehab earlier this year that was designed to include patients with PF and other lethal or chronic lung diseases, CMS threatens to prevent them from receiving the benefit that Congress worked to provide. Patients and experts worry that private insurance payers will follow suit and no coverage for pulmonary rehab will be available for the majority of patients who suffer from deadly lung diseases like PF. The only disease CMS plans to cover, under the proposed ruling, would be Chronic Obstructive Pulmonary Disease (COPD); and even COPD is being negatively affected by the ruling that plans to limit its coverage to basically only end stage patients.

"We are stunned that CMS would propose such a sweeping and negatively impacting ruling that harms so many patients. We hope that they will thoroughly review our comments and the more than 2,000 that have been submitted to them by concerned medical professionals and patient groups nationwide," said Mishka Michon, Chief Executive Officer of the CPF. "Then, it is hope that CMS will reconsider its position and provide coverage for the many types of patients who need and deserve it."

The CPF also joined with those of other patient groups as part of the American Thoracic Society’s (ATS) Public Advisory Roundtable (PAR) to make collective comment.

PF patients are referred by their physicians to pulmonary rehab for medically supervised exercise and therapy designed to preserve some of their lung capacity, help their bodies avoid infections and sustain or improve, for as long as possible, their quality of life.