Welcome to the Advocacy Correspondent, a quarterly offering from the Association of Pediatric Hematology/Oncology Nurses. This newsletter aims to inform members about legislative and regulatory issues impacting the profession of pediatric hematology/oncology nursing and the patients we serve.
APHON Advocacy Correspondent
APHON Sign-On Letters
For more information about the various sign-on letters discussed in the Advocacy Correspondent, visit the Advocacy page.
2020 Advocacy Recap
Although 2020 was a challenging year, the APHON Advocacy Committee (formerly the Advocacy/Health Policy Committee) worked diligently to support pediatric hematology/oncology nurses through advocacy.
“We are very excited to share the news that this year, APHON contributed to having the Title VIII Nursing Workforce Reauthorization Act of 2019 become law through the Coronavirus Aid, Relief, and Economic Security (CARES) Act. This was part of a COVID-19 emergency legislative package, and it will support nurses through the pandemic and beyond.”—Jami Gattuso, MSN RN CPON®, Advocacy Committee Chair
In 2021, the Advocacy Committee plans to build on this increased advocacy presence.
“APHON will continue to increase our advocacy efforts on behalf of hematology patients in 2021, specifically those with sickle cell disease and the sickle cell trait. This will allow us to more directly address health disparities experienced by many of our patients of color.”—Katy Donahue, MS RN CPNP CPHON®, Advocacy Committee Vice-Chair
With the conclusion of the 2020 general election, APHON has initiated advocacy strategy planning for working with the Biden-Harris Administration and the new Congress. Outreach efforts are underway to ensure that APHON is available as a resource to the Biden-Harris Administration and to the incoming 117th Congress for issues affecting pediatric hematology/oncology nurses.
APHON joined other members of the Nursing Community Coalition in sending a letter welcoming President-elect Joseph Biden and Vice President-elect Kamala Harris. The letter underscores the importance of having nurses participate in policy discussions and serve on the transition team, specifically the COVID-19 task force. The letter also reiterates funding requests for the Title VIII Nursing Workforce Reauthorization Act and the National Institute of Nursing Research. APHON also joined in sending a letter from the Coalition to Improve Access to Cancer Care to the Biden-Harris Administration, which introduces the coalition and the issue of parity in cost-sharing for oral cancer drugs and highlights the importance of oral anticancer treatments, improved access to care, and the Cancer Drug Parity Act.
On December 22, Congress passed H.R. 133, the Consolidated Appropriations Act, 2021. APHON is very pleased to announce that funding was included in this FY 2021 appropriations bill for several of our legislative initiatives, including these bills and initiatives that are vital for childhood cancer care and research:
- Congress provided $30 million to fully fund the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act for the third consecutive year.
- Congress provided $50 million to fully fund the Childhood Cancer Data Initiative for the second consecutive year.
- The CLINICAL TREATMENT Act was included, which will require Medicaid to cover routine care costs for enrollees with life-threatening conditions on clinical trials.
- The Peer Reviewed Cancer Research Program at the Department of Defense again included “pediatric, adolescent, and young adult cancers,” “pediatric brain tumors,” and “neuroblastoma” as priority research topics. The program also received a $5 million funding increase.
- The Pediatric Priority Review Voucher Program of the Food and Drug Administration (devised through the Creating Hope Act) was extended for 4 additional years.
Funding related to sickle cell disease (SCD) was also included:
- Congress provided $2 million in dedicated funding for the Sickle Cell Data Collection Program of the Centers for Disease Control and Prevention (CDC).
- Congress provided an extra $2 million for the Health Resources and Services Administration’s Sickle Cell Disease Treatment Demonstration Program, which is funded at $7.205 million in 2021.
In addition to provisions having an impact on pediatric hematology/oncology, this legislation provides much needed COVID-19 relief in the form of stimulus checks.
APHON achieved this major legislative success by working closely with our partners at the Alliance for Childhood Cancer, the Sickle Cell Disease Coalition (SCDC), and Kids v Cancer.
APHON Participates in Congressional Briefing on Sickle Cell Disease and Joins in Sending Letter to House and Senate
APHON participated in a congressional briefing on October 8 on SCD hosted by the American Society of Hematology (ASH) and the Sickle Cell Disease Association of America (SCDAA), in conjunction with Senators Tim Scott (R-SC) and Cory Booker (D-NJ) and Representatives Danny K. Davis (D-IL) and Michael Burgess (R-TX). The briefing covered SCD and the National Academies of Science, Engineering, and Medicine report Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action, specifically requesting funding for a longitudinal national registry of SCD patients in the United States that would allow quantification of the prevalence, life expectancy, and specific outcomes of SCD.
Following the congressional briefing, APHON joined ASH, SCDAA, and other SCDC members in calling on the House and Senate to fund the CDC’s Sickle Cell Data Collection Program in FY 2021. The House has included $2 million in funding for this program, but the final budget is still being negotiated by the House and Senate. The letter seeks $5 million in dedicated funding (1) to ensure that the data collection program can be fully implemented in those states that have worked with the CDC to develop their state-based programs and (2) to allow expansion to additional states with the goal of covering the majority of the U.S. SCD population over the next 5 years.
Through this effort, Congress provided $2 million in dedicated funding for the CDC’s Sickle Cell Data Collection Program in the Consolidated Appropriations Act, 2021.
APHON is thrilled to announce that Congress has funded the Title VIII Nursing Workforce Reauthorization Act and the National Institute of Nursing Research (NINR). The Consolidated Appropriations Act, 2021, which Congress passed as the FY 2021 appropriations bill, includes $264.472 million for Title VIII Nursing Workforce Development Programs, an increase of $4.5 million over FY 2020 enacted levels. In addition, this legislation includes $174.957 million for NINR, an increase of $5.844 million over the previous fiscal year. The National Institutes of Health received an overall allocation of $42.934 billion for FY 2021.
This is a continuation of APHON’s legislative success, with Title VIII becoming law earlier in 2020. APHON looks forward to continuing to partner with the Nursing Community Coalition on these efforts and celebrates this significant accomplishment.
APHON partnered with the American Society of Pediatric Hematology/Oncology (ASPHO) and the Coalition to Improve Access to Cancer Care in Senate meetings to advocate for passage of the Cancer Drug Parity Act. Meetings were held with Senate Minority Leader Chuck Schumer’s (D-NY) office to discuss oral chemotherapy and the Cancer Drug Parity Act. Meetings were also held with Senate Committee on Health, Education, Labor, and Pensions (HELP) members, including Senators Elizabeth Warren (D-MA), Tammy Baldwin (D-WI), Tim Scott (R-SC). The importance of oral anticancer treatments and access to care were highlighted, as was the need for federal action to ensure that oral chemotherapy is an accessible and affordable treatment.
Posted September 29, 2020
September: Sickle Cell & Childhood Cancer Awareness Months, Government Funding, and Election Prelude
September is a vital month for APHON’s advocacy efforts as it is Sickle Cell Awareness Month and Childhood Cancer Awareness Month. APHON has focused on raising awareness about sickle cell and government funding of childhood cancer initiatives leading up to and during September. Legislative efforts have focused on appropriations and sending funding requests to Congress. The government funding deadline is September 30 for the fiscal year (FY) 2021, unless a continuing resolution (CR) is passed to extend funding and avoid a government shutdown threat. As of September 25, the House has passed a CR to keep the government running through December 11. The CR is being negotiated in the Senate.
Election season 2020: On November 3, all 435 seats in the House and 35/100 seats in the Senate will be decided, in addition to the presidential election. September’s Advocacy Correspondent will bring special attention to these issues and focus on important advocacy efforts leading up to the election and the government funding deadline.
By Beth Siever, MSN RN CPNP CPON®, APHON Advocacy/Health Policy Committee Immediate Past Chair and Dominic Sawaya, JD MPPA, Manager, Health Policy and Advocacy
On August 18, 2020, the Research to Accelerate Cures and Equity (RACE) for Children Act was fully implemented. Originally signed into law in 2017, the RACE for Children Act updated Pediatric Research Equity Act (PREA) requiring all adult cancer therapies in development that has a molecular target substantially relevant to pediatric cancer must be studied in children's cancers as well. RACE for Children also ended an exemption from PREA requirements utilized by drug development companies that allowed them to forgo pediatric research and development of cancer drugs with orphan status.
Since 2017 there has been a major effort by the FDA, researchers, clinicians. and advocates to prepare for the implementation of this groundbreaking law. As of August 18, 2020, more than 1,000 cancer therapies in development for adult cancers that have not reached the end of their Phase 2 trials will now be studied in children's cancers.
RACE for Children significantly expands the drug development pipeline for pediatric cancer treatments. For our patients, this means they have the opportunity to be treated with the most exciting and promising cancer drugs currently under development and will not be limited to drugs approved for adult cancers a decade ago or more. For pediatric oncology physicians, researchers, and nurses, RACE for Children increased access to novel therapies for the treatment and pediatric clinical trials. RACE for Children also expands potential funding of pediatric cancer research as now the pharmaceutical industry is expected to invest hundreds of millions of dollars into pediatric cancer research to complete their RACE studies.
RACE for Children was first initiated by the formidable advocacy organization Kids v Cancer. APHON, along with our coalition partners at the Alliance for Childhood Cancer, supported the passage of the RACE for Children Act by raising awareness in past issues of the Advocacy Correspondent, through grassroots advocacy such as APHON members contacting their congressional representatives, and sign-on letters to Congress with the Alliance for Childhood Cancer and Kids v Cancer. This culminated in the RACE for Children Act being signed into law in August 2017. Key members of Congress who led the effort to make the Race for Children Act a reality in 2017 were Senators Bennet (D-CO) and Rubio (R-FL); Chairman Alexander (R-TN) and Ranking Member Murray (D-WA) in the Senate; Representatives Michael McCaul (R-TX) and G.K. Butterfield (D-NC); and Chairman Greg Walden (R-OR) and Ranking Member Frank Pallone (D-NJ) in the House.
Congresswoman Lauren Underwood Speaks at APHON Annual Conference
APHON was excited to welcome Congresswoman Lauren Underwood (D-IL-14) to the APHON 44th Annual Conference & Exhibit: A Virtual Experience (on-demand through December 31), where she gave the closing remarks and shared a special message with attendees. As a nurse herself, Congresswoman Underwood is a key advocate for APHON and the greater nursing and health community. APHON would like to thank Congresswoman Underwood for her support.
APHON Releases Statement on Racism and Injustice and Unites in Fight Against Both
“If you are neutral in situations of injustice, you have chosen the side of the oppressor.” Desmond Tutu
In late June, the APHON Statement on Racism and Injustice was released, standing in solidarity with people of color and with those who call for justice and action as we fight together to spread awareness and end systemic inequalities. In order to amplify this message and APHON’s voice, APHON united with fellow Nursing Community Coalition (NCC) members, and the statement was included in a joint statement. The NCC statement is a collection of statements from member organizations addressing racism and injustice and calling for diversity, equity, and inclusion. APHON proudly unites with NCC members in the fight against racial inequality and injustice. We call for America to be better and pledge to do all we can in that cause.
APHON Advocacy Training: Grassroots Nurses
In August, APHON’s Manager of Health Policy and Advocacy, Dominic Sawaya, JD MPPA, presented a virtual advocacy training webinar for the National Capital Chapter of APHON, representing DC, Maryland, and Virginia and the Nurse in Washington Internship (NIWI) 2020 recipients and runners-up. The webinar trained members on how to schedule meetings in DC and in-district visits. It also provided an overview of the legislative process and educated attendees on the APHON-specific legislative ‘asks.’ Focus was placed on advocating for oral chemotherapy parity and the Cancer Drug Parity Act.
Attendees were awarded 1 CNE contact hour upon completion of the entire educational activity and evaluation.
APHON Supports the WHO
National Comprehensive Cancer Network (NCCN) organized a series of letters supporting the World Health Organization (WHO), which were sent in July and September. For the first letter, APHON joined NCCN, the Association for Clinical Oncology (ASCO), the American Society of Hematology (ASH), and others to urge the president to reconsider the withdrawal of the US from the WHO. This reinforces APHON’s support for the WHO, an organization that is foundational to cancer care. The letter expresses support for the bipartisan Global Hope Act, which passed the House and was introduced by Representatives McCaul (R-TX) and Engel (D-NY). The Global Hope Act supports the notion that the US should work to support the goals of the WHO Initiative for Childhood Cancer, which helps increase survival rates for children with cancer.
In the second letter, APHON joined NCCN, ASH, the American Cancer Society Cancer Action Network (ACS CAN), and others to support funding for the WHO. This letter was sent to Senate Majority Leader Mitch McConnell (R-KY), Senate Minority Leader Chuck Schumer (D-NY), and key congressional committee members. This continues APHON active role as an advocate throughout the hematology/oncology community.
The Sickle Cell Disease Coalition (SCDC) released the State of Sickle Cell Disease: 2020 Report Card. This is an update to the report cards done in 2018 and 2016 as part of the State of Sickle Cell Disease project, which provides a snapshot of the state of four major categories impacting sickle cell disease (SCD): access to care in the US, training and professional education, research and clinical trials, and global issues. As an SCDC member, APHON is thrilled to share it with members.
APHON participated in the SCDC Virtual Annual Meeting on September 14. The meeting covered the 2020 Report Card, the impact of COVID-19 on SCD, and the impact of social justice issues on SCD. Information on how to get involved is available on the SCDC website.
Second Anniversary of the STAR Act and Appropriations
June 5 marked the second anniversary of the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act, which is the most comprehensive childhood cancer bill in history. It allows Congress to provide up to $30 million for the STAR Act programs each year for five years. These programs expand opportunities for childhood cancer research, improve efforts to identify and track childhood cancer incidences and enhance the quality of life for childhood cancer survivors. More information is available in the progress report on the STAR Act implementation from the Alliance for Childhood Cancer (Alliance).
Congress has fully funded the STAR Act for the past two years. APHON joined our coalition partners for the Alliance’s Virtual Day of Action on September 9 and called on Congress to fully fund the STAR Act for a third year with a social media campaign. APHON also initiated grassroots campaigns through VoterVoice, which makes it easy for members to send letters of support to their members of Congress.
Posted June 2, 2020
APHON Contributes to Legislation Becoming Law via CARES Act
APHON is excited to announce that the Title VIII Nursing Workforce Reauthorization Act (HR 728/S. 1399) was incorporated into Phase III of the COVID-19 legislation, the Coronavirus Aid, Relief, and Economic Security (CARES) Act (HR 748). Due in part to APHON’s advocacy, when the CARES Act passed, Title VIII became law.
Through coalition partners, including the Nursing Community Coalition (NCC), APHON submitted letters to Congress, urging action on this version of Title VIII starting in 2019. APHON has also mobilized members and advocated for Title VIII on Capitol Hill in various ways for the past few years. This is a significant accomplishment and one that benefits APHON members and the profession as a whole.
Following the passage of Title VIII, APHON joined sixty members of the NCC and signed on to written testimony submitted to the Senate Appropriations Subcommittee on Labor, Health and Human Services, and Education. The testimony included funding requests of $278 million for the Title VIII Nursing Workforce Development Programs and $182 million for the National Institute for Nursing Research for Fiscal Year 2021.
Also, APHON sent a letter to House and Senate leadership thanking them for their work to combat COVID-19 and outlining additional priorities for future COVID-19 legislation. Title VIII is a major legislative victory, and the advocacy work continues.
Senate Resolution on DIPG Awareness Day Passes
A resolution to mark May 17 as DIPG Awareness Day (S. Res. 587) was introduced and passed in the Senate in May 2020. The passage of this resolution brings increased awareness, and it encourages research into cures for diffuse intrinsic pontine glioma (DIPG) and pediatric cancers overall. This is something APHON has supported in the House and Senate. APHON and other Alliance for Childhood Cancer members submit a letter to Senators Marco Rubio (R-FL) and Jack Reed (D-RI) thanking them for getting this passed.
COVID-19 Update: NIWI and In-District Visits
The Advocacy/Health Policy Committee selected two APHON Nurse in Washington Internship (NIWI) Scholarship winners, but unfortunately, the 2020 NIWI was canceled due to the COVID-19 pandemic. The committee is planning additional advocacy training for the NIWI winners and applicants and is considering options for next year.
In December 2019, an advocacy training session for interested members of the Advocacy/Health Policy Committee and the APHON Board. The training covered an overview of the legislative process, APHON’s legislative priorities, the three pieces of legislation to advocate for, and how to set up an in-district meeting when a senator/representative is back in their state/district. Due to COVID-19, Capitol Hill and many district offices have been closed to visitors. Staffers from several offices have been available virtually, and APHON has continued scheduling meetings.
Title VIII was one of the top priorities, and now that Title VIII has passed, the focus has shifted to the Palliative Care and Hospice Education and Training Act (PCHETA) (HR 647/S. 2080) and the Cancer Drug Parity Act (HR 1730/S. 741).
Alliance for Childhood Cancer Virtual Spring Meeting
The Alliance for Childhood Cancer held its spring meeting virtually due to the COVID-19 pandemic. The meeting was well attended, and a major advocacy push for the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act was discussed. The STAR Act, which creates funding opportunities for research into treatment and survivorship of childhood cancer, passed in June 2018 but needs funding to be appropriated. APHON is working with the Alliance on STAR Act funding. The Alliance’s Actions Days event was also discussed, and the 2020 Actions Days will be a virtual advocacy event that is being rescheduled to September.
APHON also signed on to the Alliance’s FY21 National Institutes of Health (NIH) appropriations request letter, calling for increases in funding for medical research, including $3 billion for the NIH and $500 million for the National Cancer Institute (NCI). Specific funding related to childhood cancer includes $30 million to fund the initiatives set forth in the STAR Act, with $2 million to be awarded to state cancer registries and $50 million to continue the Childhood Cancer Data Initiative.
APHON Joins the Coalition to Improve Access to Cancer Care
After discussions with APHON leadership, APHON joined the Coalition to Improve Access to Cancer Care (CIACC) in April 2020. CIACC advocates for oral chemotherapy parity, and specifically, the Cancer Drug Parity Act. APHON participates in monthly CIACC meeting and is part of a major advocacy push for oral chemotherapy parity during COVID-19 and beyond.
APHON Contacts the White House for Nursing Mental Health During COVID-19
Several nursing organizations, including APHON and led by the American Association of Nurse Anesthetists (AANA), submitted a letter to the White House as a call to action for psychological first aid for nurses on the frontline of COVID-19 patient care. The letter was also shared with Health and Human Services (HHS), and Congress and state governors as activating and deploying this aid would require state action. The letter was the result of collaborative discussions between the nursing organizations and the American Psychological Association (APA) to make resources available for emergency mental health support for nurses.
APHON Supports PRIs With Letter to House and Senate Appropriations Subcommittees
APHON joined with the American Association for Clinical Chemistry (AACC) to support pediatric reference intervals (PRIs) with a letter to the House and Senate Appropriations Subcommittees on Labor, Health and Human Services, and Education. It includes a recommendation that Congress provides the Centers for Disease Control and Prevention (CDC) Environmental Health Laboratory with an additional $10 million in FY 2021 to initiate and advance this essential work.
The letter asks for funding to help generate PRIs from existing clinical samples. This funding would help create a more standard reference interval for a more accurate diagnosis. This is an update on a letter APHON supported previously. The letter has support from the CDC and is a continuation of PRIs language from the last letter was included as part of the Further Consolidated Appropriations Act of 2020 and became law in December 2019.
APHON Comments on Medicare Physician Fee Schedule
Through the Patient Quality of Life Coalition (PQLC), APHON submitted comments on the Medicare Physician Fee Schedule proposed rule. The comments were submitted to Centers for Medicare & Medicaid Services (CMS) Administrator Seema Verma and provided a variety of recommendations in support of increasing access to palliative care services. Non-physician practitioners (NPPs) are advocated for, including nurse practitioners (NPs).
The comments advocate for NPPs and NPs as valued members of hospice and palliative care teams, particularly as workforce shortages of palliative care physicians increase. Specific recommendations are provided related to evaluation and management (E/M) billing and documentation related to hospice and palliative care. The comments also express support for CMS’s ongoing efforts to provide appropriate Transitional Care Management (TCM) and Chronic Care Management (CCM) payment.
Posted August 2, 2019
Federal Budget Funding Update
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 would be used for data sharing in an effort to find new treatments and protocols for childhood cancers. However, the President’s proposed budget for fiscal year (FY) 2020 cut funding for important agencies and programs. For example, his budget proposed 12% cuts to the National Institutes of Health (NIH), decreasing the budget by nearly 5 billion dollars in FY 2020. He also proposed cutting nearly $1 billion from the National Cancer Institute’s (NCI) budget to fund the institute at $5.25 billion. The President’s budget tends to be more symbolic than anything because the House and Senate ultimately write the budget that is voted into law.
The House of Representatives did not see eye-to-eye with the President’s proposed funding cuts. Instead, the budget bill HR 2740 passed with an additional $21.3 billion worth of spending over the President’s FY 2020 budget request for the Department of Health and Human Services. HR 2740 funds NIH at $41.1 billion, which is nearly $7 billion more than the President’s proposed budget. The budget bill also appropriates $6.25 billion to the NCI.
The budget process isn’t over. The Senate still hasn’t released its version of a budget yet – and time is running out. The federal government’s fiscal year ends September 30. In that time, the Senate must pass their budget, and then come together with the House to negotiate whose bill both chambers will pass for the President to then sign into law.
APHON is glad to see that the House of Representatives has passed a budget that funds important cancer-related programs and initiatives. Our health policy agenda has consistently supported research efforts in pediatric hematology/oncology. We will continue to support research in these areas to support the patients we serve.
Title VIII Nursing Workforce Reauthorization Update
HR 728, the Title VIII Nursing Workforce Program Re-authorization Act of 2019, passed through the House of Representatives Energy and Commerce Committee. The bill is now awaiting a vote before the entire House of Representatives. This is great news! This is another step closer to this bill becoming law. This bill provides funding for loan repayment and training programs for nurses to work in underserved areas.
Palliative Care and Hospice Education and Training Act Bill Introduced
On July 7, Senator Tammy Baldwin introduced S. 2080, the Palliative Care and Hospice Education and Training Act (PCHETA). This is the Senate companion bill to HR 647. This bill would provide funding for nurses to receive additional education and training in hospice and palliative care. The Patient Quality of Life Coalition, of which APHON is a member, has been championing this bill for several years. This bill is currently being considered by the Senate Committee on Health, Education, Labor, and Pensions.
Oral Chemotherapy Parity Bill Update
HR 1730/S. 741, the Cancer Drug Parity Act of 2019, would require federally funded health insurance plans to cover oral chemotherapy drugs at rates that are no less favorable than chemotherapy agents administered by a health care provider. Currently, oral chemotherapies are often subject to out-of-pocket, deductible, and co-insurance costs due to how they are categorized in health plans.
APHON Supports Pain Management Best Practices
APHON joined the Patient Quality of Life Coalition in commenting on the Pain Management Best Practices Draft Report. The overall comments focused on ensuring that pain management policies continued to address the opioid epidemic and ensure that patients with serious illnesses had access to pain medications.
APHON Supports Pediatric Reference Interval Research
APHON sent a letter to the House and Senate Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies supporting $10 million in the fiscal year 2020 to help generate pediatric reference intervals from existing clinical samples. This funding would help create a more standard reference interval for a more accurate diagnosis for patients.
APHON Supports World War II Nursing Corps
APHON joined the Nursing Community Coalition in thanking the House and Senate sponsors of the United States Cadet Nurse Corps Service Recognition Act (HR 2056). APHON also joined the Nursing Community Coalition in supporting HR 2056 as an amendment to the National Defense Authorization Act. This legislation recognizes nurses who served as members of the United States Cadet Nurse Corps during World War II and provides them with honorable discharges, medal privileges, and veteran burial benefits. APHON is grateful to be able to support the greater nursing community.
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 would 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 its annual lobby day, called Action Days, in Washington, DC, on March 26-27. The Alliance will be lobbying for funding for the Childhood Cancer STAR Act, a signed bill into law in 2018. The STAR Act creates funding opportunities for research into the 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. This committee will particularly 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 to the areas of barriers to care, surveillance programs, and research. The committee met for the first time on February 21-22. Learn more.
Patient Quality of Life Coalition Supports Palliative Care Bill
The Patient Quality of Life Coalition (PQLC) continues its support of the Palliative Care and Hospice Education Act (PCHETA). This bill 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 the 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 17 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 the 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, DC, in early spring, and APHON looks forward to our continued involvement.
APHON Supports Letter to General Accountability Office
APHON signed on to the 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 the prioritization of childhood cancer through awareness raising at global and national levels and expand countries' capacity to deliver best practices 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 the 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 Medicaid needs. 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 advocate for its passage with Congress members. 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 understand better 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 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. Along with three other passionate providers and a member of PQLC, I 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 obtaining support for this legislation 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 in 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 advocate for our patients' much-needed care. 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 encourage them, 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 the letter discussing unintentional restrictions of opioids to patients who need them; they 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 palliative care access 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, MD (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