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Welcome to the Advocacy Correspondent, a quarterly offering from the Association of Pediatric/Hematology Oncology Nurses. The goal of this newsletter is to inform members about legislative and regulatory issues impacting the profession of pediatric hematology/oncology nursing and the patients we serve.

*This is a special edition of the Advocacy Correspondent highlighting the Nurse in Washington Internship Program (NIWI) from the perspective of the 2018 APHON NIWI scholarship winners; continue to send your health policy and advocacy news to This email address is being protected from spambots. You need JavaScript enabled to view it..

APHON Advocacy Correspondent

Posted December 12, 2018

Sickle Cell Research Bill Passed by Congress

On December 11, the House passed the bipartisan bill S. 2465, the Senate version of the Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act. The bill previously passed the Senate on October 11, 2018. Now that S. 2465 has passed both chambers of Congress, it will be sent to the President for his signature. S. 2465 is an important step in providing grants to states, institutions, and non-profits to study sickle cell disease and other heritable blood disorders. APHON has worked with the Sickle Cell Disease Coalition to bring awareness about this bill to members and to advocate for its passage with members of Congress. Thank you to all for your persistence and hard work.

Posted October 8, 2018

My Experience At Lobby Day

By: Amy Haskamp, MSN RN CNS CPON®

Haskamp LobbyDayWith the support of APHON and the Patient Quality of Life Coalition (PQLC), I was fortunate to be a small part of the Palliative Care Lobby Day in Washington, DC in support of PCHETA (Palliative Care Hospice Education and Training Act) on June 20, 2018. Because I do not consider myself a political person and could not remember my teachings from high school government class, a video from my early childhood, “I’m Just a Bill” produced by Schoolhouse Rock in 1976 helped me to better understand how a bill becomes a law. Thankfully, between the video and the amazing education provided by PQLC in preparations for our meetings with our state representatives and senators, I felt well prepared. While I may not understand politics, I do understand the challenges our patients and families face when palliative and/or hospice care is needed. Working with oncology families for the past 20 years, specifically in palliative care for the past 4 years, I have witnessed the many deficits in the education, research and care for children with life threatening illnesses and their families. For this I can speak to, for this I am passionate about, and for this I can advocate for change. I, along with three other passionate providers and a member of PQLC, met with eight offices from Ohio and Indiana to discuss PCHETA.

PCHETA has been well supported in the House, but had yet to be marked up by the House Energy and Commerce Committee to take to the full House for a vote. Congresswoman Susan Brooks (R-IN) is a member of the House Energy and Commerce Committee, and therefore was an important meeting to ask her to request that the committee markup the bill for a vote by the House. Additional successful meetings were had with the other congressmen from Ohio and Indiana. On June 27, 2018, the committee unanimously approved the legislation.

PCHETA has fewer co-sponsors in the Senate. Therefore successful meetings with our senators were crucial to obtain support for this legislature in the Senate. The meeting with Senator Todd Young (R-IN) went well, as a great deal of education regarding the differences between palliative and hospice care was provided, allowing for a better understanding of the services this legislation would provide. I was able to explain to Sen. Young’s staff the deficits in care for our pediatric patients enrolled into hospice in the state of Indiana, to help his office understand the needs of our patients moving forward. Since this meeting, Sen. Young’s website states he supports the bill, but has not yet cosponsored the bill, a step in the right direction.
At the end of the day, I was both physically and mentally tired, yet felt energized that I may have made a difference for our patients and families. My patients have given so much to me over the past 20 years; I felt it was my duty and obligation to give of myself; to step out of my comfort zone, and to advocate for the much needed care of our patients. Together we can all make a difference. Please contact your state representatives and senators to ask them to support and cosponsor this important piece of legislation.

Thank you to APHON and PQLC for supporting me in attending my first Lobby Day.

APHON Participates in Virtual Lobby Day

APHON participated in the Patient Quality of Life Coalition’s 2018 Virtual Lobby Day. The virtual lobby day centered around three actions:

  1. Asking Senators to cosponsor PCHETA.
  2. Asking Senators to urge HELP Committee Chairman Alexander and Ranking Member Murray to move PCHETA forward.
  3. Asking Senate Majority Leader McConnell and Minority Leader Schumer, HELP Committee Chairman Alexander and Ranking Member Murray to move PCHETA forward.

APHON sent 61 emails to 24 Senate offices. Thank you to all who participated!

APHON Joins ASH In Supporting Sickle Cell Legislation

APHON signed on to a letter to Senators Lamar Alexander and Patty Murray to show support for S. 2465, the Sickle Cell Disease Research, Surveillance, Prevention and Treatment Act of 2018 and to encourage the Senators to keep the surveillance provisions focused on sickle cell.

APHON Supports Palliative Care Measures

In a letter to the House and Senate leaders, APHON signed on to a letter discussing unintentional restrictions of opioids to patients who need them, the need to support access and coverage for non-pharmaceutical therapies to treat pain, and the need for additional research on non-opioid pain medications.

Physician Fee Schedule Comments

APHON joined the Patient Quality of Life Coalition in suggesting changes to the physician fee schedule in the following areas: Virtual check-ins, Remote Evaluation of Pre-Recorded Patient Information, Interprofessional Internet Consultation, Bundled Episode of Care for Substance Use Disorders and focus on non-opioid alternatives, Evaluation & Management (E/M) Visits, and New opioid-related QPP MIPS Measures.

APHON Member Attends Critical Mass Lobby Day

Member Kathy Kelly attended the Critical Mass Coalition’s annual lobby day. She went to six meetings with House and Senate members or their staff and discussed HR 2976, the Deferment for Active Cancer Treatment Act. This bill would allow patients undergoing active cancer treatment to put their loans into deferment, whereas currently patients can only ask for a forbearance.

We Need Your Help to Support PCHETA!

We need your help to pass S. 693, the Palliative Care and Hospice Education and Training Act (PCHETA). This bill would both expand education and training and expand research opportunities in palliative care. As professionals working with seriously ill patients, this bill would help increase access to palliative care for seriously ill patients. The bulleted items are tweets that you can send to the list of Senators below:

  • There’s an easy way to improve the quality of life for millions of seriously ill patients and their families @YOURLAWMAKER. Please cosponsor #PCHETA S. 693 and urge leadership to move the bill forward. @PatientQoL & the bill’s 50 supporting orgs will thank you!
  • Please make today better for patients and their families @YOURLAWMAKER. Please cosponsor #PCHETA S. 693 to improve the quality of life for patients with serious illness. @PatientQoL & the bill’s 50 supporting orgs will thank you!
  • Please cosponsor #PCHETA S. 693 @YOURLAWMAKER to improve the quality of life of patients with serious illness. It will lead to reduced pain and better coordinated care between doctors. @PatientQoL & the bill’s 50 supporting orgs will thank you!

Republican Senators, on the HELP Committee, not yet cosponsors of PCHETA


Sen. Johnny Isakson (R-GA) @SenatorIsakson


Sen. Todd Young (R-IN) @SenToddYoung


Sen. Pat Roberts  (R-KS) @senpatroberts


Sen. Rand Paul (R-KY) @RandPaul


Sen. Bill Cassidy, M.D. (R-LA) @BillCassidy


Sen. Richard Burr (R-NC) @SenatorBurr


Sen. Tim Scott (R-SC) @SenatorTimScott


Sen. Orrin Hatch (R-UT) @SenOrrinHatch


Sen. Michael Enzi (R-WY) @SenatorEnzi