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.
APHON Advocacy Correspondent
Posted March 25, 2019
State of the Union Pledges Funds to Childhood Cancer
During the February 5, 2019 State of the Union address, the President announced that he would seek an additional $500 million over ten years to fund research related to childhood cancer. In an additional follow-up call with childhood cancer stakeholders, including APHON, members of the Trump Administration specified that the funding will be used for data sharing in an effort to find new treatments and protocols for childhood cancers. No other additional details have been released at this time.
Sickle Cell Disease Bill Signed Into Law
On December 12, 2018, the Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2018 (S.2465) was signed into law. This bill creates funding opportunities to study aspects of sickle cell disease, it creates a surveillance program, and reauthorizes a sickle cell disease treatment demonstration program at the Health Resources and Services Administration. Thank you for contacting your Members of Congress to request that they support this bill.
Alliance for Childhood Cancer Action Days
The Alliance for Childhood Cancer is holding their annual lobby day, called Action Days, in Washington, D.C. on March 26-27. The Alliance will be lobbying for funding for the Childhood Cancer STAR Act, a bill that was signed into law in 2018. The STAR Act creates funding opportunities for research into treatment and survivorship of childhood cancer. Although the legislation was signed into law that created these programs, the legislation did not include funding.
New Committee to Recommend Sickle Cell Disease Strategic Plan
The National Academies of Sciences, Engineering, and Medicine, by request The Department of Health and Human Services (HHS), Office of Minority Health, has convened a committee to recommend a strategic plan of action to address sickle cell disease in the United States. In particular, this committee will study current practice guidelines, factors associated with sickle cell disease, and treatment and survivorship. Following this research gathering, the committee will recommend a series of programs and policies related in the areas of barriers to care, surveillance programs, and research. The committee met for the first time February 21-22. Learn more.
Patient Quality of Life Coalition Supports Palliative Care Bill
The Patient Quality of Life Coalition (PQLC) continues their support of the Palliative Care and Hospice Education Act (PCHETA), a bill that would provide additional education training to providers in hospice and palliative care. APHON joined the PQLC in sending a letter of support for PCHETA to the House of Representatives. APHON also joined the PQLC in recommending the Senate Committee on Health, Education, Labor and Pensions (HELP) include palliative care policies in legislation as another way to address rising health care costs.
APHON Supports Title VIII Funding
APHON joins the Nursing Community Coalition in supporting Title VIII Nursing Workforce Reauthorization funding. Title VIII Nursing programs help support nursing training and education in rural and underserved communities. APHON signed on to a letter in January thanking Representative David Joyce (R-OH-14) for introducing H.R.728, Title VIII Nursing Workforce Reauthorization Act of 2019. The Nursing Community Coalition is asking Congress for $266 million for Nursing Workforce Development Programs and $173 million for the National Institute of Nursing Research for Fiscal Year 2020. Read the Nursing Community Coalition’s brochure on Priorities for the 116th Congress and Title VIII One-Pager.
APHON Supports Pediatric Cancer Research
APHON joined the Alliance for Childhood Cancer in supporting two letters related to pediatric cancer research. APHON joined in supporting House of Representatives Resolution 114 to support May 17th as “DIPG Awareness Day”. This resolution would raise awareness and encourage research for DIPG as well as pediatric cancers in general. The second letter that APHON supported thanked the Administration for proposing $500 million in additional pediatric cancer funding over the next decade, but expressed concern of the President’s proposed cuts to the National Institutes of Health (NIH) and the National Cancer Institute. These proposed cuts jeopardize future pediatric cancer research. These cuts could also potentially jeopardize funding for the Childhood Cancer STAR Act. The STAR Act would be partially funded through the NIH. The STAR Act may not get funding if the NIH budget is cut. APHON continues to monitor the budget process.
Posted December 17, 2018
Advocate for Pediatric Hematology/Oncology Nurses on Capitol Hill!
Have you ever wanted to learn more about public policy or advocacy for pediatric hematology/oncology nurses on Capitol Hill? APHON will support two members to join in on this incredible experience!
The Nurses in Washington Internship (NIWI) provides nurses the opportunity to learn how to influence health care through legislative and regulatory processes. The dates for 2019 are March 24-26.
- learn from health policy experts and government officials
- network with other nurses
- visit members of Congress.
Applications for APHON NIWI scholarships are now available. The deadline for applications is January 11, 2019.
APHON Participates in Alliance for Childhood Cancer Fall Meeting
On October 10, 2018, APHON members Beth Siever and Katherine Donahue participated in the fall Alliance meeting. As you recall, the Alliance was one of the biggest supporters of the Childhood Cancer STAR Act and spent many years working towards its eventual passage. Now that the bill has passed, the Alliance is shifting focus to STAR Act implementation. The meeting also discussed ongoing work on global health issues associated with childhood cancer, received an update on Children’s Oncology Group, discussed the hurdles of implementing the Right to Try Act, and brainstormed goals for the next three to five years. The Alliance will hold its Action Day in Washington, D.C. in early spring and APHON looks forward to our continued involvement.
APHON Supports Letter to General Accountability Office
APHON signed on to a letter with the Alliance for Childhood Cancer that asked the General Accountability Office (GAO) to provide specific recommendations on improving access and payment for childhood cancer survivorship and palliative care programs.
WHO Announces Global Childhood Cancer Initiative
In September 2018, the World Health Organization announced the Global Initiative for Childhood Cancer. This initiative aims to increase prioritization of childhood cancer through awareness raising at global and national levels and to expand the capacity of countries to deliver best practice in childhood cancer care.
APHON Supports Title VIII Reauthorization
The Title VIII NURSE Corps Loan Repayment Program, one of the Title VIII Nursing Workforce Development Programs, was created to assist those nurses who are willing to work in the areas with critical staffing needs and depressed salaries. A last minute provision to add for-profit facilities in the program could put the entire program in jeopardy. APHON joined with the Nursing Community Coalition to support Title VIII Reauthorization as it currently stands.
APHON Supports PCHETA
APHON worked with the Patient Quality of Life Coalition to support Senate passage of the Patient Care and Hospice Education and Training Act. This bill supports palliative care education to health care providers, including nurses. This bill could fund vital training to nurses who work in hematology and oncology.
Bill Would Improve Care for Children With Complex Needs
On December 11, 2018, the House passed The IMPROVE Act, which contains a measure that would improve care for children with complex needs on Medicaid. Children with blood diseases, such as anemia or sickle cell disease, would be eligible for medical assistance. This bill would provide children with home health services. It would also help coordinate access to health care providers and palliative services (if the State provides it). This bill would help increase access to vital health care options to the most vulnerable patients.
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®
With 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:
- Asking Senators to cosponsor PCHETA.
- Asking Senators to urge HELP Committee Chairman Alexander and Ranking Member Murray to move PCHETA forward.
- 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