ParticipACTION 2007

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Press Release: NTMir ParticipACTION 2007 Successful!

March 20, 2007

ParticipACTION 2007 was a great success!  NTM Info & Research’s ParticipACTION 2007 advocacy and education event occurred in Washington, D.C. March 11-12, 2007. 

An upbeat theme was set at the Welcome Dinner on Sunday night with a dance performance by NTM patient Laura Rogers, accompanied live on drums by Ken Ives.

Over 50 attendees on Monday, March 11^th included 40 patients, friends and family.  Our members were joined by 12 physicians from leading medical institutions across the United States, including Georgetown University HospitalMedical Center, the Johns Hopkins Hospital, Mary Washington Hospital, Mayo Clinic, University of Miami, National Institutes of Health, National Jewish Medical and Research Center, New York University, and University of Texas Health Center at Tyler.  Monday was devoted to advocacy and medical training.

NTMir President Philip Leitman welcomed the group and passionately outlined our motivation for being in Washington, D.C.  Mr. Leitman then described the three steps essential to the success of our advocacy mission:

1)      Prepare an agenda for, and meeting with, a Member of Congress.

2)      Attend the meeting, learn what you can, and request help from the Member.

3)      What will be asked to do now – follow up with each Member to ensure that we are remembered when legislation is passed.

John Walsh, President and CEO of Alpha-1 Foundation (Alpha-1 is a genetic disease) spoke about how to get a national organization successfully developed.  Alpha-1 Foundation is now in its 11^th year, so Mr. Walsh provided very helpful insight and experience as it would apply to NTMir.

Miriam O’Day, NTMir Senior Director of Public Policy, explained what lobbying is, how to communicate effectively with Congressional staff, and what to expect in the meetings on Tuesday.

Dr. Timothy Aksamit from Mayo Clinic in Rochester, Minnesota summarized the new American Thoracic Society guidelines on NTM.  The guidelines can be viewed at:   http://www.thoracic.org/sections/publications/statements/pages/mtpi/nontuberculous-mycobacterial-diseases.html

During lunch we had a question and answer period with the morning speakers.

Dr. Steven Holland from National Institutes of Health in Bethesda, MD discussed a range of topics from basic research to clinical trials and therapies for patients.  He explained the research process from its conceptual stages to final results. 

Dr. David Lynch from National Jewish Medical and Research Center in Denver, Colorado discussed the evolving role of radiology in the diagnosis and ongoing management of pulmonary NTM disease.  Technology is changing, and so too are the tools available to physicians.  Dr. Lynch discussed the importance of technological change in the radiology field as well as the significance of using technology to monitor pulmonary NTM disease before clinical decline occurs.  

The end of the training and education session ended with an open question and answer session.  The physicians personally answered many patient questions ranging from radiology to alternative treatments and the nutritional effects of acid reducing drugs.  It was truly a wonderful opportunity to have so many knowledgeable and caring physicians in one venue!

Dinner at the Capitol Hill Club on Monday included a visit from Senator Jeff Bingaman (D-NM), who was the guest speaker. 

On Tuesday, March 12^th patients and physicians spread out to attend 51 meetings with the offices of United States Senators and Representatives from 19 states.

Most of our representatives were quite receptive to our cause, and it was very encouraging that many agreed to actively support our legislative requests.  Our Congressional meetings were far more numerous than in 2006 and were significantly more productive as well, for several reasons.  First, NTM patients, NTMir and NTM disease are considerably better-known than last year.  Second, our requests for 2008 are more tightly defined.  Third, in addition to having sponsorship in the House of Representatives, we had a fully prepared “Dear Colleague” letter from Rep. Ileana Ros-Lehtinen (R-FL) that many Representatives’ offices (both Democrat and Republican) were positively inclined to support. 

In past years, our main legislative support was in the House, but this year several Senate offices agreed to support companion language that gives NTMir a far stronger position on behalf of pulmonary NTM patients.  Additionally, there was an open and receptive attitude regarding our request for an additional $7 million to enable the Centers for Disease Control to implement epidemiological studies.  This receptiveness by itself represents a significant step forward.

Representative Ros-Lehtinen, who has been the sponsor of our language amendments the past several years, was presented with NTMir’s newly established and prestigious Bipartisan Leadership Award in NTM Healthcare for 2007.  Similarly, Senator Jeff Bingaman (D-NM) was recognized for his support of our programs.  These two leaders have pledged their continuing support of our cause.

Several Senate and House offices asked to be kept fully apprised of our activities and indicated that they are receptive to taking additional steps to assist NTMir and NTM patients in our mission of advocacy and education.  It is very clear from the feedback we have received that the physician and patient partnership to seek awareness and support for NTM disease initiatives was well-received.

Tuesday night, during dinner, we talked about the day’s meetings.  There was an overall feeling that the mission was accomplished.

The highlight of the evening was Jon Bernhard’s (Colorado Support Group Leader) straw analogy describing to friends and family what it’s like to have an NTM disease.  If you ever run into Jon be sure and ask him about it.  (We are trying to convince him to put it on a CD and distribute it as it truly describes to others what it’s like to have this disease.) 

Physicians in Attendance

Timothy Aksamit, M.D.

Consultant

Mayo Clinic
Pulmonary Disease and Critical Care Medicine

Rochester, Minnesota

Charles Daley, M.D.

Head, Division of Respiratory & Mycobacterial Disease

National Jewish Medical and Research Center

Denver, Colorado

Steven Holland, M.D.

Chief, Laboratory of Clinical Infectious Diseases

National Institute for Allergy and Infectious Diseases

National Institutes of Health

Bethesda, Maryland

Michael Iseman, M.D.

The Girard and Madeline Beno Chair in Mycobacterial Diseases

Professor of Medicine and Infectious Diseases

National Jewish Medical and Research Center

Denver, Colorado

David Kamelhar, M.D.

Clinical Associate Professor

Department of Medicine

NYU Medical Center

New York, New York

David Lynch, M.D.

Co-Director, Division of Radiology

National Jewish Medical and Research Center

Denver, Colorado

Anne O’Donnell, M.D.

Chief, Division of Pulmonary,

Critical Care and Sleep Medicine
Georgetown University Hospital

Kenneth Olivier, M.D.

Staff Pulmonologist, Immunopathogenesis Section

Laboratory of Clinical Infectious Diseases

National Institute for Allergy and Infectious Diseases

National Institutes of Health

Bethesda, Maryland

Matthias Salathe, M.D.

Associate Professor of Medicine

Miller School of Medicine

University of Miami

Timothy Sherwood, M.D.

Thoracic Surgeon

Virginia Cardiovascular and Thoracic Surgery

Mary Washington Hospital

Fredericksburg, Virginia

Richard Wallace, M.D.

Professor of Medicine/Microbiology

University of Texas Health Center

Tyler, Texas

Jonathan Zenilman, M.D.

Professor of Medicine
Chief, Infectious Diseases Division
Johns Hopkins Bayview Medical Center

Baltimore, Maryland

Appointments Held with the Following Members of Congress

Senators’ Offices

April 20, 2007

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