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A Dedication to Resourceful Living: A group approach to focus on what matters to the members of our community whose lives are impacted by chronic lung disease.

PF Support Group Advocacy Memorandum

Attention this is a very long email, please read and scroll all the way to end.

Your help is needed!

PF Support Group Advocacy Memorandum

TO 78 PF Support Groups in 33 states

FR Paul Fogelberg, Patient-Advocate

RE We Need Your Help in February of 2012!

DOWNLOAD THE ADVOCACY LETTER TO SEND TO YOUR CONGRESSMAN OR WOMAN (MS Word Doc Format)

DOWNLOAD THE BILL SUMMARY OF S. 1350 and H.R.2505

First of all, THANK YOU for being a PF Support Group Leader/Organizer! Speaking as both a PF patient and as a PF Support Group organizer myself, you are doing really important work. I am writing to ask for another favor from you and the group you lead.

The US Congress is considering legislation that will provide funding for a national pulmonary fibrosis patient surveillance registry AND a national PF research action plan … vital tools that are missing from the effort to help PF patients today. This legislation CAN pass if we (PF patients, caregivers, family and friends) let our voices be heard early in 2012!

Today (01/31/12) we have 74 co-sponsors for the Pulmonary Fibrosis Research Enhancement Act (PFREA) – Senate bill # S. 1350 & House bill # H.R. 2505 - from 29 states, the District of Columbia & American Samoa. We need you and your Group members to help us generate additional co-sponsors by

1) sending e-mails to your US Senators and US Representative

2) making follow-up phone calls to their offices

3) writing ‘Letters to the Editors’ of your local papers asking your

Congressional representatives to support the bills

4) attending “Town Hall Meetings” sponsored by your Members of

Congress to bring the bills (S. 1350 & H.R. 2505) to their attention, and

5) making appointments to visit your US Senators & Representative in their home district offices to ask them directly for their support (if you are able to do so).

Pulmonary Fibrosis Advocates are all volunteers lead by former US Representative Brian Baird (D, WA-3) whose father died from complications of the disease. Rep. Baird was also the original Lead Sponsor of the PFREA legislation in the US House. Our all-volunteer force now has the able assistance of the Washington DC law firm of Holland & Knight – expert lobbyists who are lending their support on a pro bono (no cost) basis.

We are coordinating our advocacy work with both the Pulmonary Fibrosis Foundation and the Coalition for Pulmonary Fibrosis. Unlike those organizations, our ONLY mission is to advocate for PF patients, their families, caregivers and friends in Washington DC on issues that impact the PF community. We are a registered, qualified nonprofit, 501(c)(4) organization.

We need YOUR help – and your Group’s help – to get the PFREA advocacy job done in 2012! Please share this Memo and the enclosures with your members, family and friends.

Enclosed you will find the following:

1) a short 1-page summary of the PFREA legislation

2) a listing of the current co-sponsors of the bills arranged by state

3) a 2-page Memo outlining the PFREA advocacy agenda for 2012,

4) IPF – FAQ: a PF advocacy piece for your use in persuading your Members of Congress to support

S. 1350 & H.R. 2505 ~ the Pulmonary Fibrosis Research Enhancement Act, and

5) a sign-up form for joining the PF Advocates in our work on your behalf.

PF Advocates website coming next week! www.pfadvocates.org

We now expect that the PF Advocates website will be active next week offering information on the legislation and an easy ‘1-click’ tool for sending a message of support to your US Senators & Representative. Watch for it at www.pfadvocates.org (and, let us know how we can improve the site for your use!).

Please CALL or E-MAIL if we can help you or Members of your support group in any way. We are available Monday-Friday 9:00am – 5:00pm Central and some nights/weekends (remember, it is an all-volunteer force!)

Toll-free 800.229.2531

E-mail paul@proedgroup.com Paul A. Fogelberg, Patient-Advocate

With your help, we can pass the PFREA legislation in 2012. Please get this information to your Group’s members ASAP!

Finally, once again, THANK YOU for your important work for PF patients, families, caregivers and friends! We look forward to celebrating the passage of the PFREA legislation with you later this year.

Congressional Research Service (CRS)

Summary of S. 1350 and H.R. 2505

The Pulmonary Fibrosis Research Enhancement Act

Bill Summary & Status - 112th Congress (2011 - 2012)
S. 1350 and H.R.2505 - CRS Summary

Title: Pulmonary Fibrosis Research Enhancement Act

Senate Sponsor: Sen Coons, Christopher A. [DE] (introduced 7/12/2011)

Cosponsors (11 as of 01/20/12)
Latest Major 7/12/2011 Referred to Senate committee. Status: Read twice and Action: referred to the Committee on Health, Education, Labor, and Pensions.

House Sponsor: Rep Paulsen, Erik [MN-3] (introduced 7/12/2011)

Cosponsors (59 as of 01/20/12)
Latest Major 7/15/2011 Referred to House Energy & Commerce Committee, Action: Subcommittee on Health.

SUMMARY.

Pulmonary Fibrosis Research Enhancement Act - Amends the Public Health Service Act to require the Director of the Centers for Disease Control and Prevention (CDC) to:

(1) establish the National Pulmonary Fibrosis Advisory Board,

(2) develop a system to collect data on pulmonary fibrosis and other interstitial

lung diseases, and

(3) establish the National PF Registry.

Requires the Secretary of Health and Human Services (HHS), in developing the Registry, to:

(1) expand and coordinate existing data and surveillance systems, surveys,

registries, and other federal public health and environmental infrastructure; and

(2) provide for research access to pulmonary fibrosis data.

Directs the Secretary to ensure that epidemiological and other types of information are made available to the National Institutes of Health (NIH) and the Department of Veterans Affairs (VA).

Requires the Director of CDC to prepare the National Pulmonary Fibrosis Education and Awareness Plan, which shall:

(1) focus on strategies to increase public education and awareness of pulmonary

fibrosis,

(2) address the need for new physician education strategies to improve diagnosis

and treatment standards, and

(3) assess and monitor the costs of pulmonary fibrosis and its burden on patients

and families.

Encourages the Director of the National Heart, Lung, and Blood Institute to expand, intensify, and coordinate Institute pulmonary fibrosis research activities.

Full text of each 5-page bill is available at

SENATE S. 1350 http://thomas.loc.gov/cgi-bin/query/z?c112:S.1350:

HOUSE H.R. 2505 http://thomas.loc.gov/cgi-bin/query/z?c112:H.R.2505:

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