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CPF Submits Comments to CMS to Save Only Effective Therapy Available to PF Patients

Proposed Medicare Ruling Would End Pulmonary Rehab for Thousands of Dying Patients

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.

CMS accepts public comment on the proposed ruling until midnight tonight.

Top pulmonologists and PF experts joined the CPF in making its comments to CMS. They are:

  • Marvin Schwarz, MD, James C. Campbell Professor of Medicine University of Colorado Health Sciences Center and the CPF's board of directors chairman
  • James Loyd, MD, Medical Co-Director, Lung Transplant Program Medical Co-Director, FLOLAN Program for Primary Pulmonary Hypertension, Vanderbilt University Medical Center
  • Adaani Frost, MD, Professor of Medicine, Baylor College of Medicine
  • Paul Noble, MD, Professor of Medicine Division Chief, Allergy & Critical Care Medicine, Duke University Medical Center and the CPF's chairman of its scientific advisory board
  • Glenn Rosen, MD, Associate Professor of Medicine, Division of Pulmonary & Critical Care Co-Director, Stanford University Lung Disease Center, Stanford Medical Center
  • Marilyn Glassberg, MD, Assistant Professor of Medicine, Division of Pulmonary & Critical Care Medicine, University of Miami/Jackson Memorial Medical Center
  • Jeffrey Golden, MD, Medical Director, Lung Transplantation Director, Interstitial Lung Disease Clinic University of California, San Francisco
  • Harold Collard, MD, University of California, San Francisco
  • Stephen Nathan, MD, Medical Director, Lung Transplant & Advanced Lung Disease Programs, Inova Fairfax Hospital
  • Maria Padilla, MD, Associate Professor of Medicine Director of the Advanced Lung Disease Program, Mt. Sinai Medical Center
  • Ganesh Raghu, MD, Professor of Medicine, University of Washington, Chief of Chest Clinic
  • Director, Lung Transplant Program and Interstitial Lung Disease Program University of Washington Medical Center
  • Fernando Martinez, MD, Associate Professor, Division of Pulmonary and Critical Care Medicine Director, Lung Volume Reduction Program, Medical Director, Pulmonary Diagnostic Services University of Michigan Medical Center

About Pulmonary Fibrosis (PF)

Pulmonary Fibrosis (PF) is a lung disorder characterized by a progressive scarring - known as fibrosis -- and deterioration of the lungs, which slowly robs its victims of their ability to breathe. Approximately 128,000 Americans suffer from PF, and there is currently no known cause or cure. An estimated 48,000 new cases are diagnosed each year. PF is difficult to diagnose and an estimated two-thirds of patients die within five years of diagnosis. Sometimes PF can be linked to a particular cause, such as certain environmental exposures, chemotherapy or radiation therapy, residual infection, or autoimmune diseases such as scleroderma or rheumatoid arthritis. However, in many instances, no known cause can be established. When this is the case, it is called idiopathic pulmonary fibrosis (IPF).

About the CPF

The CPF is a 501(c)(3) nonprofit organization, founded in 2001 to accelerate research efforts leading to a cure for pulmonary fibrosis (PF), while educating, supporting, and advocating for the community of patients, families, and medical professionals fighting this disease. The CPF funds promising research into new approaches to treat and cure PF; provides patients and families with comprehensive education materials, resources, and hope; serves as a voice for national advocacy of PF issues; and works to improve awareness of PF in the medical community as well as the general public. The CPF's nonprofit partners include many of the most respected medical centers and healthcare organizations in the U.S. With more than 19,000 members nationwide, the CPF is the largest nonprofit organization in the U.S. dedicated to advocating for those with PF. For more information please visit or call (888) 222-8541.

SOURCE Coalition for Pulmonary Fibrosis
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