ࡱ> @ Ajbjbܡܡ ,^;l4zvvvvvvv~~~~~~~, vvvvvvvv$vv~JFJv~6"~+u8~޽RcxX~x88~ TIME \@ "MMMM d, yyyy" December 9, 2004 MINUTES US COPD Coalition Hotel Monaco, 1101 Fourth Ave, Seattle, Washington Tuesday, October 26, 2004 Co-Chairs: A. Sonia Buist, MD; William C. Bailey, MD Participants: Sonia Buist, William Bailey, Co-Chairs: Antonia Anzueto (ACCP), Homer Boushey (ATS), Linda Caron (COPD Alert), Sarah DeWeerdt, Dennis Doherty (NLHEP), Gary Ewart (ATS), Joseph Fay (ALA), Monica Fletcher (NRTC), Sam Giordano (AARC), Larry Grouse, John Hiser (AARC), Hannah Hedrick (NECA), Tony Huang (EPA), Suzanne Hurd, James Kiley (NHLBI), Claude Lenfant, Margaret Lester (NRTC), Amy Maggio (COPD Foundation), David Mannino (U. Kentucky/CDC), Ray Masferrer (AARC), Larry Nair (NEF), Stuart Stoloff, Lori Tartell (James P. Mara Center for Lung Disease), Alvin Thomas, Brian Tiep (PERF), Gerard Turino (COPD Foundation), John Walsh (Alpha-1 Foundation), Barbara Yawn. Sponsors (at 12:00 noon): Marie Phillips (ALTANA Pharma); Betsey King, Elizabeth Sozanski, Linda Steel (AstraZeneca); Chris Blair, Eileen Grossman, Jeff Zhu (Boehringer Ingelheim), Ron Camaro, (Dey), Jochen Scheld, Novartis I. Welcome and Introduction of Participants The Co-Chairs welcomed the participants to this fourth meeting of the US COPD Coalition held in Seattle Washington, the site of the annual meeting of the American College of Chest Physicians. After participants were introduced, the agenda (Attachment 1) was reviewed, including plans to open the meeting to representatives from Coalition Sponsors upon completion of the formal agenda. The meeting objectives included (a) the US COPD Coalition by-laws and Coalition Structure; (b) identification of projects for the US COPD Coalition from the Strategic Plan; (c) discussion of progress with the US COPD Caucus. A Briefing Book was distributed prior to the meeting; additional copies were available for those who had not received the mailing. II. Organization of the US COPD Coalition A. Bylaws: At the May 2004 meeting, a draft copy of US COPD Coalition Bylaws was distributed. Several organizations offered comments, the By-laws were revised accordingly, and distributed to all US COPD Partner Organizations active in May 2004. These organizations were invited to become partners in the US COPD Coalition newly formed as a 501c(3) Organization (approval has been obtained from the IRS). Most of the original Organizations have agreed to continue participation in the US COPD Coalition under the terms of the new By-Laws and the co-chairs were pleased to note that two new government liaison groups had joined, the EPA and the Veterans Administration Medical System. (See complete list on website at www.uscopd.org). It was recommended that the American Academy of Nurse Practitioners, the American Academy of Physician Assistants, the American Physical Therapy Society and the Society of Internal Medicine be invited to join the Coalition. The co-chairs acknowledged the participation of Dr. Barbara Yawn and Dr. Stuart Stoloff, Family Physicians who have an active interest in both asthma and COPD, Dr. Alvin Thomas, Howard University, and Dr. David Mannino, University of Kentucky. These individuals have agreed to participate in the US COPD Coalition to represent the patients that they serve. Drs. Yawn and Stoloff are committed to active communications with the American Academy of Family Physicians; Dr. Thomas with the National Medical Association and Dr. Mannino with the Centers for Disease Control and Prevention in Atlanta. B. Executive Committee: The By-laws include the formation of an Executive Committee to include partner organizations on a rotating basis. Although this Committee will be convened (usually by teleconference), it is expected to meet only for emergency issues. The intent is to conduct all business of the US COPD Coalition through two meetings, one in the fall (for example at the American College of Chest Physicians) and one in the spring (for example at the American Thoracic Society/American Lung Association). However, if a need arises where the Executive Director requires that an action be taken, it is more practical to call upon a small number of people, and thus the importance of the Executive Committee. Accordingly, the following individuals/organizations were nominated and to serve for the on the Executive Committee through May, 2005: Dr. Sonia Buist, Co-Chair Dr. William Bailey, Co-Chair (One co-chair will rotate off in 2005, one in 2006) Dr. Homer Boushey, ATS Dr. Richard Irwin, ACCP Mr. Sam Giordano, AARC Dr. Dennis Doherty, NLHEP Mr. John Walsh, Alpha-1 Foundation Dr. Sree Nair, National Emphysema Foundation Mr. Gary Bain, EFFORTS Dr. Larry Grouse was nominated to serve as the Executive Director and Treasurer of the US COPD Coalition. He will provide the financial statement for the Coalition at the May, 2005 meeting. The participants approved the selection of Drs. Buist and Bailey as Co-chairs, and the recommended Organizations for the Executive Committee effective until May 31, 2005. The participants approved the selection of Dr. Larry Grouse to be the Executive Director and Treasurer of the US COPD Coalition for a four year term. Action: A Nominating Committee will be formed to develop a slate for Chair, Co-chair and Executive Committee membership for the period June 1, 2005 to May 31, 2006. This slate will be presented for discussion and approval at the May, 2005 meeting. C. Conflict of Interest: A Conflict of Interest statement needs to be developed and carefully considered. All agreed that full disclosure will be required, and a clear statement made on how each statement submitted will be reviewed and made public. Action: A working group was formed to prepare a document for discussion and approval at the May 2005 meeting. Members include John Walsh, Sam Giordano, and Suzanne Hurd. III: A US Strategic Plan for COPD A US COPD Strategic Plan (available at www.uscopd.org) has been developed based on recommendations from the November 2003 conference. It is intended to be a living document to be updated by each of the Partner Organizations as they work on programs related to COPD. Proposed changes/updates and comments should be sent to  HYPERLINK "mailto:shurd@prodigy.net" shurd@prodigy.net. To focus the discussion on work underway by Partner Organizations, the topic of World COPD Day, November 17, 2004 was raised. The GOLD Program sponsors World COPD Day and several documents are available on the GOLD website ( HYPERLINK "http://www.goldcopd.org" www.goldcopd.org) including a sample Press Release that can be used at the local/state level with the insertion of local data about COPD. Other activities have been planned for World COPD Day, 2004 by Partner Organizations include: NECA Nov 13 COPD Education and Awareness Program in Colorado COPD Foundation - COPD Digest: Second issue out on November with large distribution. Will have information about World COPD Day. Alpha-1 Foundation - PR radio spots that can be used at the local level to be distributed by World COPD Day AARC - Conducts Respiratory Care Week in October and uses 60 second health tip radio spots to raise awareness of respiratory diseases, including COPD. EPA: Created a one page color handout for COPD patients (available on  HYPERLINK "http://www.epa.gov" www.epa.gov) distributed through state health departments. National Respiratory Training Centers Through November will run a series of programs. The Co-chairs emphasized the importance of the need for many different activities throughout the US to bring awareness for COPD. Several ideas and suggestions were made to make World COPD Day 2005 more visible: Develop ideas and a timetable for World COPD Day 2005 for discussion during the May US COPD Coalition meeting. Determine if some events should be orchestrated by the US COPD Coalition in addition to events at the local level through the Partner Organizations. Identify individuals in the US who could serve as spokespersons for COPD for news events, at the national and local levels. These can be sports figures, people with COPD, or well known medical experts. Develop an E-newsletter for the US COPD Coalition to post on the website so that individuals/organizations can sign up to get information about World COPD Day activities, and submit information about the activities that are planned and conducted. Prepare a common message about COPD in language meaningful to the US public. There was considerable discussion on the pros and cons of linking COPD to the flu. All agreed that if this is done, it should be a decision taken by a Partner Organization, not the US COPD Coalition. If the message about the flu shot is used, it is essential to provide information of what else can be done if the flu vaccine is not available. Several websites have this information (for example, the AAFP). Action: Initiate a working group to develop ideas for a coordinated World COPD Day 2005 program. Individuals who wish to be included on this working group should identify themselves (shurd@prodigy.net). IV: Congressional COPD Caucus A. Participants Congressional COPD Caucus Members: Mr. Gary Ewart, Chair of the US COPD Coalition group that interacts with the Congressional COPD Caucus informed the group of the progress to date. Thirty eight members of the US Senate and House of Representatives, with bipartisan representation, have signed on to this Caucus. Mr. Ewart is very pleased with the size of the group, and the enthusiasm of the leaders, Senators Crapo and Lincoln, and Representatives Sterns and Lewis. The full roster of the Congressional COPD Caucus is posted on  HYPERLINK "http://www.uscopd.org" www.uscopd.org. B. Legislative Actions: Target Legislative Actions for the Congressional COPD Caucus have been developed by a working group, chaired by Mr. Ewart, with membership from several of the US COPD Coalition partner organizations with offices in the Washington DC area, including ATS, ALA, Alpha-1 Foundation/Association, ACCP, AARC and NAMDARC. The topics include COPD research funding, Medicare coverage of COPD treatment (including medications) and pulmonary rehabilitation, oxygen and air travel, statistics on COPD from CDC, indoor/outdoor air quality, and tobacco control efforts. Progress that has been made was summarized by Mr. Ewart, including letters to the CDC Director about US COPD statistics, and the CMS Administrator about reimbursement for pulmonary rehabilitation. Although no responses have been received, these letters identify the issues and it is anticipated that some actions will eventually result. Considerable effort in the past several months has been spent on the important issue of oxygen use in air travel, with excellent input from many of the US COPD Coalition Partner Organizations. A Press Briefing on this topic had been scheduled for late-September by Senator Crapo, but had to be postponed at the last minute due to an appearance in Congress of the Administrator from Iraq. When the Press Briefing is rescheduled, Partner Organizations will be informed of the new date. The discussion focused on the importance of reimbursement for pulmonary rehabilitation, a topic of considerable interest to most of the US COPD Coalition Partner Organizations. There is a need to examine the available literature related to benefit and economics including work reported from the UK (in their recent COPD Guidelines published in Thorax), New Zealand/Australia, and in the US based on data produced by the investigators participating in the US National Emphysema Treatment Trial (NETT) supported by the National Heart, Lung, and Blood Institute and CMS. The focus of the economic discussion should be on both direct (health care system) and indirect (cost to the person/family) costs. Action: A working group should be formed to develop a position paper on the topic of reimbursement of pulmonary rehabilitation. The following organizations indicated an interest in participating: ATS, ACCP, NAMDARC, AARC, AACVPR, NHLEP, Respiratory Training Center, one or more patient groups. A health economist should be an active participant. The participants thanked Mr. Ewart and his colleagues for the work they are doing and congratulated them on their progress. V: Other Business Many of the US COPD Partner Organizations have an interest in early diagnosis of COPD, including when spirometry should be used for early diagnosis (screening vs case finding), training to raise awareness of the use of spirometry, effective use of spirometry equipment, interpretation of results, messages to provide to individuals based on spirometry tests performed, and use of spirometry in primary care. Action: A working group should be formed to examine the work that is being done around the topic of spirometry within the US COPD Coalition Partner Organizations and formulate recommendations for work that may yet be needed to answer all the questions. Organizations that should be included are NHLBI, ATS (and partners from AAFP who participate in the ATS project on spirometry), NLHEP, ACCP, AARC, VA. VI. Adjournment The meeting adjourned at 12:00 noon. Participants were invited to meet with Coalition Sponsors to describe some of the needs and opportunities for work on COPD. During the discussion, the issue of getting input from the sponsors into setting the agenda for the US COPD Coalition was raised. A suggestion was made that the meeting agenda be set well in advance and posted on the US COPD Coalition website for comment. All agreed that the best way to assure an effective partnership between all the groups that must work together to meet the multiple goals of the US COPD Coalition that an effective means of communication is essential. The next meeting will be held on Wednesday, May 25, 2005 from 9:00 am to 1:00 pm in San Diego, California, the site of the annual meeting of the ATS/ALA. The location of the meeting, and the meeting agenda, will be posted on the US COPD Coalition Website as this information becomes available. _________________ _________________ Sonia Buist, MD William Bailey, MD Co-Chair, US COPD Coalition Co-Chair, US COPD Coalition (Minutes prepared by Suzanne S. Hurd, PhD) Attachments: Agenda Please visit the US COPD Coalition Website ( HYPERLINK "http://www.uscopd.org" www.uscopd.org) for: US COPD Coalition Partner Organizations Participants in Congressional COPD Caucus US COPD Coalition Strategic Plan  TIME \@ "MMMM d, yyyy" December 9, 2004 AGENDA US COPD Coalition EXECUTIVE COMMITTEE Hotel Monaco, 1101 Fourth Ave, Seattle, Washington Tuesday, October 26, 2004 Co-Chairs: A. Sonia Buist, MD; William C. Bailey, MD 9:00 12:00 noon I. Welcome and Introduction of Participants II. Organization of the US COPD Coalition US COPD Coalition By-Laws Develop committee structure III. 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Courier New;Wingdings"1hTLhLډ&i1i2l!0d<;c 3qHOctober 15, 2000Suzanne S. HurdSarah DeWeerdt Oh+'0 , H T ` lx'October 15, 2000rdctoSuzanne S. HurduzauzaNormal Sarah DeWeerdt3raMicrosoft Word 10.1@G@J"@^V@XS)Yi1 ՜.+,D՜.+,< hp|  'MCRi< October 15, 2000 Title @ _PID_HLINKS_AdHocReviewCycleID_EmailSubject _AuthorEmail_AuthorEmailDisplayName'A> http://www.uscopd.org/>  http://www.uscopd.org/>N http://www.epa.gov/@Xhttp://www.goldcopd.org/*mailto:shurd@prodigy.netSpUS COPD CoalitionyNshurd@prodigy.netyN Suzanne Hurd.ne  !"#$%&'()*+,-./12345679:;<=>?@ABCDEFGHIJKLMNOPQRSTUVWXYZ[\]^_`abcdefghijklmnopqrstuvwxy{|}~Root Entry F4~)Data 01Table88WordDocument,^SummaryInformation(zDocumentSummaryInformation8CompObjX FMicrosoft Word DocumentNB6WWord.Document.8