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PQLC LOBBY DAY WASHINGTON, DC • JULY 23, 2014

July 16 Training Dick Woodruff, Keysha Brooks-Coley, Sue Ramthun, & Dan Smith

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?

PATIENT QUALITY OF LIFE COALITION (PQLC) ¢ Our mission

¢ Who we are

¢ What we’re doing

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.

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

PATIENT CENTERED QUALITY CARE FOR LIFE ACT (PCQCLA)

PATIENT CENTERED QUALITY CARE FOR LIFE ACT (PCQCLA)

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

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

PALLIATIVE CARE AND HOSPICE EDUCATION AND TRAINING ACT (PCHETA)

TITLES VII& VIII, PHSA: BRICKS & MORTAR; INCREASE TRAINING DIVERSITY TO ADDRESS WORKFORCE SHORTAGES

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)

¢ 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)

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

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.

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

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

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.

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

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

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

FOR MORE INFORMATION…

¢ Visit PatientQualityofLife.org

QUESTIONS?

Please contact: Auda Martinez auda.martinez@advocacysmiths.com 703-399-0202