2019 Policy Agenda

The 2018 midterm elections resulted in a split Congress, with Democrats in charge of the House and Republicans holding the Senate. In the summary below, we explore the current childhood cancer landscape at both the federal and state levels — and some of the policy priorities that guide the work we do in 2019.

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United States Congress:

With a divided Congress, health policy initiatives will require bipartisan action which means uncontroversial authorizing legislation and bipartisan efforts on bills. 


For children with cancer, treatment means pre-existing conditions forever. Election Day exit polls showed health care was the top concern for voters. Insurance coverage for pre-existing conditions became a key issue in the closing days of the 2018 midterm elections, and it will continue to be a focus of childhood cancer advocates’ attention as Congress considers changes in the Affordable Care Act.

The Democrat’s control of the House means an effective veto to Republican efforts to repeal the Affordable Care Act and impact pre-existing conditions. 

Children’s Cause will continue to protect coverage for survivors so that care can never be denied because of a child’s cancer history.




Debates will continue in Washington about how to address the skyrocketing cost of prescription drugs.  While a comprehensive drug pricing solution remains a difficult policy goal to achieve, both parties are interested in smaller reforms, like increasing transparency around drug makers' relationships with pharmacy benefit managers.  Democrats will likely continue to press for government negotiation on drug prices - which President Trump supported before his election.

This issue will increase in importance as new “precision” medicines address hard-to-treat cancers. Precision medicine holds the promise of treating children with cancer with fewer long term and late effects, but these drugs are extremely expensive. Their pathway to the clinic is complex and expensive for biopharmaceutical companies to develop, and because they address only a few patients whose cancers have rare characteristics, they are not blockbuster drugs.

Childhood cancers are a host of rare diseases, each one now understood to consist of many different subsets. The cost of drugs to treat only a handful of children a year will be astronomical for companies and shareholders to continue their investment.

Childhood cancer advocates, including the Children’s Cause, will be watching discussions of drug prices closely in order to ensure that cost does not prevent children from having access to new agents that can be more effective and less toxic than current regimens.


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At least one-third of childhood cancer patients depend on Medicaid coverage for their care. Most children are treated in the context of clinical trials, and their routine care is covered by insurance while the research costs of a trial are covered by a sponsor (most often the National Cancer Institute).  Families would suffer exorbitant expenses for care if Medicaid did not cover routine medical care as children are treated. 

To protect families and children’s care, Children’s Cause will support the reintroduction of the Clinical Treatment Act during the next Congress so that states’ Medicaid plans will be required to cover these costs.



With Democrats taking control in the House, the leadership will appoint new Chairs to the health authorizing Committees.  At the House Energy and Commerce Committee, the likely chairman is Rep. Frank Pallone (D-NJ) with Rep. Greg Walden (R-OR) as the likely ranking member. At the Energy and Commerce Health Subcommittee the likely chairman is Rep. Anna Eshoo (D-CA) with Rep. Mike Burgess (R-TX) as ranking member.

At the House Ways and Means Committee, the leadership will remain unchanged except for a power swap, with Rep Richard Neal (D-MA) taking the gavel and Rep. Kevin Brady (R-TX) serving as the ranking member.  At the Ways and Means Subcommittee, the possible new chair is Rep. Lloyd Doggett (D-TX) and Rep. Vern Buchanan (R-FL) as ranking minority. 

In the Senate, Sen. Chuck Grassley (R-IA) will probably assume the chairmanship with Sen. Hatch (R-UT) retiring and Sen. Ron Wyden (D-OR) remaining as ranking minority.

State Policy:

Medicaid changes in the states are likely in 2019.  New Governors could influence Medicaid expansions across the country.  Governors could expand Medicaid in Kansas, Maine and Wisconsin after Democrats won races in those states.  States considered and approved Medicaid expansion ballot initiatives in three states - Utah, Idaho and Nebraska.