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PQLC LOBBY DAY WASHINGTON, DC • JULY 23, 2014
July 16 Training Dick Woodruff, Keysha Brooks-Coley, Sue Ramthun, & Dan Smith
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TODAY’S AGENDA
¢ What is the Patient Quality of Life Coalition? ¢ Why are we doing a lobby day?
¢ Background on the two bills pending in Congress
¢ 40+ Hill Meetings and the “Lobby Day Ask”
¢ Capitol Hill Logistics
¢ Questions & Answers?
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PATIENT QUALITY OF LIFE COALITION (PQLC) ¢ Our mission
¢ Who we are
¢ What we’re doing
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PQLC SUPPORTS POLICY CHANGES TO:
¢ Advance public understanding of how palliative care improves patient and family quality of life.
¢ Ensure sufficient numbers of doctors, nurses and other health care professionals to both teach and to practice palliative care.
¢ Invest in research needed to support the delivery of high-quality palliative care.
¢ Expand the delivery of coordinated care and palliative care for patients in hospitals, nursing homes and all community settings.
¢ Manage the pain and other symptoms experienced by seriously ill patients in order to maximize their quality of life during and after treatment.
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PQLC LOBBY DAY
¢ First PQLC grassroots lobby day! ¢ Further educate members of Congress and their
staff about the important issues surrounding patient quality of life
¢ Advance legislation that will increase patient access to higher quality of care, through increasing palliative care in the nation: � H.R. 1666, Patient Centered Quality Care for Life Act � H.R. 1339 & S. 641, Palliative Care and Hospice
Education and Training Act
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PATIENT CENTERED QUALITY CARE FOR LIFE ACT (PCQCLA)
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PATIENT CENTERED QUALITY CARE FOR LIFE ACT (PCQCLA)
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PATIENT CENTERED QUALITY CARE FOR LIFE ACT (PCQCLA)
Addresses 3 Main Public Policy Priorities:
¢ Expands federal support for research at the National Institutes of Health (NIH)
� Palliative care, symptom management, pain management
¢ Establishes program to educate patients and caregivers about the palliative care delivery model (CDC)
¢ Creates an education and training program for allied health professionals (HRSA)
� Nurses, nursing assistants, social workers, professional chaplains, patient navigators
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PATIENT CENTERED QUALITY CARE FOR LIFE ACT (PCQCLA)
¢ ASK = Cosponsor PCQCLA � Or thank if already a cosponsor
¢ House bill (Reps. Cleaver/Bachus) � 104 cosponsors � Bipartisan (13 GOP)
¢ Senate bill
� Actively working to identify lead sponsors
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PALLIATIVE CARE AND HOSPICE EDUCATION AND TRAINING ACT (PCHETA)
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TITLES VII& VIII, PHSA: BRICKS & MORTAR; INCREASE TRAINING DIVERSITY TO ADDRESS WORKFORCE SHORTAGES
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Establishes palliative care workforce programs (modeled after current geriatric programs) • Education Centers – interdisciplinary training • Physician Training – train the trainer model • Academic Career Awards – career
development for HPM junior faculty • Workforce Development – fellowships to
encourage re-training for mid-level physicians • Career Incentive Awards – grants/contracts
for those agreeing to teach in PC for 5 years
PALLIATIVE CARE AND HOSPICE EDUCATION AND TRAINING ACT (PCHETA)
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¢ ASK = Cosponsor PCHETA � Or thank if already a cosponsor
¢ House bill (Reps. Engel/Reed) � 139 cosponsors � Bipartisan (25 GOP)
¢ Senate bill (Sen. Wyden) � 16 cosponsors � Seeking GOP support
PALLIATIVE CARE AND HOSPICE EDUCATION AND TRAINING ACT (PCHETA)
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Who supports the bills? >30 Groups Support the PCQCLA & PCHETA, including:
� American Academy of Hospice & Palliative Medicine � American Academy of Pain Management � American Cancer Society Cancer Action Network � American Childhood Cancer Organization � American Heart Association - American Stroke Association � American Society for Clinical Oncology � C-Change � Cancer Support Community � Catholic Health Association of the United States � Center to Advance Palliative Care � Hospice & Palliative Nurses Association � National Association of Social Workers � National Hospice & Palliative Care Organization � National Palliative Care Research Center � Oncology Nursing Society � Supportive Care Coalition
COMMONLY ASKED QUESTIONS
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COMMONLY ASKED QUESTIONS
What if they already cosponsored the bill(s)?
¢ Thank them!
¢ Before your meeting, be sure to review the list of cosponsors.
¢ Focus on the legislation they have not yet cosponsored.
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COMMONLY ASKED QUESTIONS
What’s the cost? PCQCLA: The bill authorizes “such sums as necessary” subject to appropriation. ~$25 million over 5 years PCHETA: The bill authorizes funds, subject to appropriation. ~$50 M for each of five years
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COMMONLY ASKED QUESTIONS
Authorization vs. Appropriation ¢ Authorization:
� Serves as the basis for operating a program ¢ i.e., permission to spend federal funds
� Provides guidance to the Appropriations Committee as to an appropriate level of funding
¢ Appropriation: � Annual process to provide funding for various
government programs
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REVIEW OF “LOBBY DAY ASK”
¢ All Meetings: Give patients and families the quality of life they deserve when faced with serious illness.
¢ House meetings � Cosponsor H.R. 1666, the Patient Centered Quality Care
for Life Act. � Cosponsor H.R. 1339, the Palliative Care and Hospice
Education and Training Act.
¢ Senate meetings � Introduce H.R. 1666, the Patient Centered Quality Care for
Life Act in the Senate. � Cosponsor S. 641, the Palliative Care and Hospice
Education and Training Act.
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CONGRESSIONAL MEETINGS
¢ Expect: � Different member and staff personalities � Varying levels of interest and support � Range of knowledge about palliative care (refer to the
coalition’s definition in your materials)
¢ Meeting flow: � Introduce yourselves (name, organization, geography) � Introduce PQLC (again, using your materials) � Explain the need for increased access to palliative
care and how the bills would help � Tell your personal story: connect your story to the
need for better patient quality of life � Make the legislative asks
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LOGISTICS FOR JULY 23
¢ 8:00 am: Meet in U.S. Capitol Visitor’s Center Room HVC-200 � Breakfast � More training � Send-off � Receive your Hill meeting schedules � Prepare for meetings with your small groups
¢ 10:00 am: First Hill meetings begin ¢ 5:00 pm: Hill meetings end
Ø Schedules you receive prior to July 23 will be drafts Ø Please make yourselves available until 5 pm Ø Please do not skip meetings
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FOLLOW PQLC ON TWITTER
¢ Follow us @PatientQoL ¢ Use hashtags #PQLC and #palliativecare in your
lobby day posts ¢ Don’t forget to tag @PatientQoL ¢ Tweet about:
� Who you met with � What you discussed � New cosponsors! � Pictures from the
day
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FOR MORE INFORMATION…
¢ Visit PatientQualityofLife.org