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CAC2 April Advocacy Call–Agenda & Feb. meeting notes

CAC2 ADVOCACY CALL- Tuesday, April 8, 2014 12:00pm EST Dial-in Number: 605-781-1000, Participant Access Code: 630468#

Agenda:

  1. Introduction/Roll call (12:00-12:03)
  2. CAC2 Mission & Purpose for CAC2 Bi-Monthly Advocacy Calls (12:03-12:05) Nancy Goodman (nancygoodman@kidsvcancer.org), Kids V Cancer
  3. Upcoming Events & Meetings (12:05-12:25) Curefest – September 21, 2014Mike Gillette (mike@thetruth365.org), The Truth 365Childhood Cancer Action Day – June 23 & 24, 2014
    Maureen Lilly (mlilly@childrenscause.org), Alliance for Childhood Cancer & CCCA

    CAC2 Summit & Annual Meeting – June 24 & 25, 2014
    Joy Cruse (joycruse@grandecom.net), TeamConnor Childhood Cancer Foundation & CAC2

    Childhood Cancer Caucus – September 2014
    Erica Appel (Erika.Appel@mail.house.gov) LA, Congressman Chris Van Hollen & Andy Taylor (Andy.Taylor@mail.house.gov), LD, Congressman Mike McCaul

    Rally for Medical Research Hill Day – September 17-18, 2014
    Jon Retzlaff (jon.retzlaff@aacr.org) and Mary Lee Watts (marylee.watts@aacr.org), AACR

  4. Update: Current Legislative Initiatives (12:25-12:35am)
    Recent NCI Cuts to COG and the Pediatric Pre-Clinical Testing ProgramBeth Anne Baber (beth@tnci.org), The Nicholas Conor InstituteCaroline Pryce Walker Conquer Childhood Cancer Reauthorization Act (HR2607/S1251) Maureen Lilly (mlilly@childrenscause.org), CCCA

    Patient Choice Act (HR2090)
    Jonathan Agin (jagin@jonathanagin.com) & Karen Jaffe (kjaffe1964@gmail.com)

    The MODDERN Cures Act (HR3116)
    Joe Baber (jwbaber3@icloud.com), Four Square Clobbers Cancer & Grandparents In Action

  5. Good News to Share: Passed Bills, Advocacy Events, etc. (12:35-12:55) Compassion Use trial & waiver: Josh Hardy & Zachary BernsteinRichard Plotkin (rplotkin@maxcure.org), Max Cure Foundation & Grandparents In ActionPresident’s Office of Engagement: A Direct Line of Communication Tony Stoddard (cheftony@comcast.net), A Day of Yellow and Gold

    Creating Hope Act

    Nancy Goodman (nancygoodman@kidsvcancer.org), Kids V Cancer

    Gabriella Miller Kids First Research Act

    Ellyn Miller (ellyn@smashingwalnuts.org), Smashing Walnuts Foundation

    Cancer Prevention Research Institute of Texas (CPRIT): Research Grants & Initiatives Annette Leslie (carrymecarson@gmail.com), Carson Leslie Foundation

    Rare Disease Week, February 2014
    Rob Whan (robwhan@gmail.com), Caleb’s Crusade Against Childhood Cancer

CAC2 ADVOCACY CALL NOTES – TUESDAY, FEBRUARY 4, 2014 12:00 EST
Joe Baber (jwbaber3@icloud.com), Four Square Clobbers Cancer & Grandparents In Action

The third CAC2 Advocacy call was held on Tuesday, February 4, 2014, at 12:00 Noon. Nancy Goodman was the moderator with approximately thirty plus participants.

The group agreed that going forward the mission of The CAC2 Advocacy Call would to provide a venue for the free exchange of information to the childhood cancer community about legislative initiatives that are being pursued by various organizations and provide opportunities for others to support those initiatives. The group also agreed that the next bimonthly call will be held on April 8, 2014 at 12 noon.

Amy Haddad, of Children’s Cause Cancer Advocacy, provided updated information on the Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act (HR: 2607). The act, with 40 House co-sponsors, would remove some of the barriers and coordinate bio-banking efforts by NCI. It would provide funding for childhood cancer registries and have the GAO write a report on barriers in pediatric oncology therapy development. She also asked for support on the Childhood Cancer Survivors’ Quality of Life Act, (H.R.2058) which provides measures to improve quality of life by providing better work force training, and pilot projects on survivorship clinics. She reports it may be difficult to pass now due to funding.

CCCA also is collecting information on the Affordable Care Act. Amy invited everyone to visit CCCA’s site at

http://childrenscause.wordpress.com/2014/02/04/laws-sausages-and-biobanking/

Jonathan Again, advocate/lobbyist, asked for support on Patients Choice Act HR: 2090 A patient or family facing a life threatening or terminal illness, would have the ability to obtain drugs, at their expense, that have already been in phase I and II trials with established safety profiles. These are drugs or treatments that are currently being investigated for potential full approval by the FDA. It also provides more opportunities for smaller biotech companies to become more competitive in marketing drugs. Email Jonathan directly to give support. http://www.jonathanagin.com/

Richard Plotkin, Co-Chair Max Cure Foundation, reported on his meeting with Rep. Leonard Lance (NJ-R) in November. He convinced the Congressman to co-sponsor HR 2019 Gabriella Miller Kids First Act and HR 2607 Carolyn Pryce Walker Reauthorization Act as well as HR 2058 Survivor’s Act. Richard also has a contact with Rep. Frank Pallone (NJ-D) who also in on the Energy and Commerce Committee.

Beth Anne Baber, The Nicolas Conor Institute (TNCI) shared an update on the Gabriella Miller Kids First Research Act that passed the House in December. The act will repurpose federal election funds into $126 million in pediatric research over 10 years. It is now in the Senate and has support of Senators Kaine, Warner, and Hatch. The bill passed the house because of a lot of support and letter writing on behalf of over 100 organizations. The same effort will be needed to get it through the Senate. To support this effort visit: http://4sqclobberscancer.com/on-capital-hill/hr2019/ or beth@tnci.org .

Joe Baber, TNCI, Four Square Clobbers Cancer and Grandparents in Action, spoke of the importance of having childhood cancer organizations well represented at the Rare Disease Legislative Conference & Lobby Day 2014 on 2/25/14. While he believes childhood cancer is NOT rare, and while others classify it as such, he feels that we should take the opportunity to participate and be able to talk to Congressional Reps and Senators about needed and pending childhood cancer legislation. Register for Rare Disease Day at http://rareadvocates.org/lobby-day/

Mike Gillette, The Truth 365, related that the goal of his organization is to move childhood cancer to the attention of the general public in the same manner HIV-Aids, breast cancer, climate control and others have done. Using social media and traditional media to be a voice for kids with cancer, he wants to move the government into action. They are willing to help push and support any legislation that will help childhood cancer. A second Curefest will be held in the Capitol on September 21, 2014. There will be a walk from the White House to the Capitol by hundreds of supporting organizations as a start to a new Childhood Cancer Movement. More information can be found at: http://www.thetruth365.org

Nancy Goodman, Kids v Cancer, spoke on the Creating Hope Act. It creates market incentives for rare pediatric disease drug development in the form of vouchers. She expects at least one voucher will be issued this year. Biotechs are beginning to get excited about the prospects for them. She is continuing to work with the FDA to refine the process of companies applying for designations to be able to participate. Europe is looking at implementing the Creating Hope act. She hopes to have the act permanently authorized by 2016.

Nancy reports that the Cancer Prevention Research Institute of Texas (CPRIT) is a $3 billion fund dedicated to cancer research and there are $2 billion left. They are considering making pediatrics a priority program. Anyone from Texas should contact Vickie Buenger at vbuenger@gmail.com.

In order to manage the Advocacy Calls going forward, Nancy Goodman, Joe Baber, Beth Anne Baber, Maureen Lilly, Jonathan Agin, Amy Haddad, Tony Stoddard, Angie Giallourakis and Mike Gillette volunteered to be members of the CAC2 Advocacy Coordinating Council. The purpose of the Council is to set dates for and advertise future calls and/or meetings. The Council will set the agenda and choose various members to alternate moderating the calls/meetings and the reporting of the minutes to post on the CAC2 website and other websites to be determined. Future calls are expected to be enhanced using technology being acquired by CAC2.

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