The ASPHO Advocacy Brief
Welcome to the Advocacy Brief, a quarterly offering from the American Society of Pediatric Hematology/Oncology. The goal of this e-newsletter is to inform members about legislative and regulatory issues impacting the profession of pediatric hematology/oncology and the patients we serve.
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Visit ASPHO’s Legislative Tracking Chart to see a list of bills that ASPHO is monitoring.
Raise your hand if the elections played out exactly as you thought they would.
Maybe you can, maybe you can’t. Those pesky election statistics were right this time, though: Democrats won the House and Republicans stayed in control of the Senate. According to exit polls, voters were most concerned about health care.1 What does this mean for ASPHO? Health care is at the top of everyone’s agenda in 2019. Here are some of the biggest issues in play beginning in 2019:
Three red states, Nebraska, Idaho, and Utah, voted to expand Medicaid via ballot initiative. This expansion would allow individuals whose income reaches up to 138% of the federal poverty level to gain access to medical care. An estimated 300,000 low-income people, including children, will gain access to health care in these three states.2 This momentum may expand to other states: Maine, Kansas, and Wisconsin may also seek to expand Medicaid. Overall, this means more children with access to care.
Pre-existing conditions protections are safe – for now. With a Democrat majority in the House, no repeal bill will pass this chamber, even if a repeal passes the Senate. However, there is a lawsuit in Texas, titled Texas v. United States, which challenges the individual mandate and potentially the entire Affordable Care Act, including pre-existing conditions protections. The lawsuit was joined by 20 Republican state attorney generals, governors, and two individuals. The Department of Justice is not defending the case, leaving 16 Democrat state attorney generals and governors to defend the law.3
One of the most talked-about topics in Congress right now is drug pricing. The President has publically discussed plans to combat high drug costs. Many Democrats campaigned on the promise of lower drug prices if elected. This could be one topic that finds bipartisan support in the next Congress, but there may be pushback from the pharmaceutical industry. Cancer drugs are some of the most expensive drugs in the industry. Potential price drops could mean greater access.
ASPHO will continue to engage on issues that affect pediatric hematology and oncology. In conjunction with our coalition partners, we will continue to engage on the following health policy agenda items:
• Ensure adequate federal funding for research, surveillance and other legislation
• Improve access to drugs, devices and biologics for children and adolescents
• Promote adequate payment for care of children by subspecialists in pediatric hematology/oncology to support needed access and workforce
Sarah Nichelson, JD, Health Policy and Advocacy Manager
1. Benjy Sarlin, Midterm exit polls: Health care is top issue for voters, NBC News (November 6, 2018)
2. “What the 2018 Midterm Elections Means for Health Care," Health Affairs Blog, November 7, 2018. DOI: 10.1377/hblog20181107.185087
3. “Judge Hears Oral Arguments In Texas v. United States," Health Affairs Blog, September 10, 2018. DOI: 10.1377/hblog20180910.861789
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. ASPHO 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.
On October 10, 2018, ASPHO members Eric Sandler and Wendy Darlington participated in the fall Alliance meeting. ASPHO maintains two representatives to the Alliance as part of the Advocacy Committee charge to collaborate with other organizations as appropriate to achieve the Society’s identified priorities. As you recall, the Alliance was one of the biggest supporters of the Childhood Cancer STAR Act, a bill that would maximize discovery and accelerate development and availability of promising childhood cancer treatments, 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 challenges 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 ASPHO looks forward to our continued involvement.
ASPHO joined the American Academy of Pediatrics and 61 other groups to support reauthorizing loan repayment for pediatric subspecialists as part of the broader effort to reauthorize Title VII health professions workforce programs. If enacted, this program would increase pediatric subspecialists and encourage greater geographic distribution, ultimately increasing access to children in underserved areas.
ASPHO 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.
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.
The American Society of Hematology is presenting a new ASH Congressional Fellowship, which will allow a hematologist to work in a Congressional office on Capitol Hill and help shape health care and hematology policy for an academic year beginning in September 2019. For more information about the fellowship and how to apply, visit the ASH website.
Several members have alerted ASPHO about the Asparaginase Erwinia Chrysanthemi (Erwinaze) shortage. ASPHO has reached out to IRC member Jazz Pharmaceuticals for more information. Jazz Pharmaceuticals recommends setting up supply alerts at the website Erwinaze Supply. Those who sign up will be alerted when the drug is in stock and when the drug is out of stock. The FDA is reporting that the drug is expected to be available the week of January 14, 2019, at the earliest. ASPHO members can see information about the shortage at the supply website above or on the FDA Drug Shortages website.
The National Cancer Institute (NCI) has been busy implementing the report created by the Moonshot Blue Ribbon Panel. The report covered 10 areas for research. One area specific to childhood cancer is to “intensify research on the major drivers of childhood cancers,” specifically to “improve our understanding of fusion oncoproteins in pediatric cancer and use new preclinical models to develop inhibitors that target them.” NCI is funding a research team who is studying immunotherapeutic approaches in children. Their efforts are targeted at identifying immune targets and specific treatments for pediatric cancers, as well as modeling immunotherapy testing against cancer. The Moonshot is also funding research on highly aggressive pediatric cancers.
For more information on our coalition partners and activities here are some helpful links:
Please visit our Health Policy & Advocacy website section for past issues of Advocacy Brief.