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.
The Future of the Affordable Care Act- Repeal, Replace, or Other
Jordan Wildermuth, MSW, Health Policy & Advocacy Manager
In early January 2017, the Senate and House passed a budget resolution instructing House and Senate committees to begin work on legislation to repeal major portions of the Affordable Care Act (ACA). Because the Senate used the reconciliation process to enable the legislation to pass with a simple majority, the only items that can be addressed in the legislation are tax and spend components. The committees were charged with writing the repeal legislation by a self-imposed deadline of January 27, 2017.
The political climate around the issue is murky because there has not been clear direction on whether the ACA repeal and replacement would happen simultaneously or be done piecemeal. President Trump has stated that he wants a simultaneous approach while Republican leadership has stated that replacement legislation would take time. In recent comments, Speaker Paul Ryan has said that parts of the bill would be replaced concurrently and that the process would occur between March and April. The sentiment from Speaker Ryan has calmed the nerves of several Republicans who are uneasy about overhauling the ACA without a replacement in hand. The simultaneous approach will be complicated as Congress attempts to balance the initial repeal legislation with maintaining the insurance market and then implementing a replacement. Once confirmed as Secretary of the Department of Health and Human Services, it would be Rep. Tom Price’s job to guide the crafting of regulations to implement the legislation.
The details of a replacement plan are the elephant in the room. There have been assurances that popular provisions such as non-discrimination for preexisting conditions and allowing individuals to remain on their parents’ insurance plan until age 26 will remain, but the language has not yet appeared. We can be certain that the final replacement legislation will draw from Rep. Tom Price’s Empowering Patients First Act, Speaker Paul Ryan’s A Better Way plan, and the Republican Study Committee’s American Health Care Reform Act. Congress also will need to consider President Trump’s wish list, which includes “insurance for everybody.” Here is a look at key principles that may serve as the foundation for replacement legislation.
Elimination of the Individual Mandate
The individual mandate (to carry insurance) would be replaced with incentives to maintain “continuous coverage” such as late enrollment penalties and waiting periods to reestablish coverage.
The Trump Administration has been clear that they want to give states control of Medicaid through block grants. The grants could be distributed as either one lump sum adjusted for inflation or through an allowance per beneficiary.
A popular topic pre-ACA is now back in the fold. High-risk pools could be set up by insurance plans or states with block grants to offer coverage for individuals such as those with pre-existing conditions.
Health Savings Accounts
Proponents want to see the expansion of services available for purchase with health savings account (HSA) funds, as well an increase in the maximum allowable amount an individual is able to contribute. There is also discussion about allowing individuals enrolled in Medicare or Tricare or those who get care from the Veterans Affairs or Indian Health Service to use and contribute to HSAs.
As we go to press there have been numerous proposals for repeal legislation, although no one has coalesced around one particular plan. The most talked about include the Patient Freedom Act from Senators Bill Cassidy (R-LA), Susan Collins (R-ME), Shelley Moore Capito (R-WVA), and Johnny Isakson (R-GA) and Senator Rand Paul’s S. 222. President Trump made a splash by issuing an executive order directing members of his administration to take steps that will facilitate the repeal and replacement of the ACA. If there was a crystal ball, I think we would see a longer transition period before repeal of the ACA than what is anticipated as well as provisions that look very similar to what currently exists.
Lori Luchtman-Jones, MD, Cincinnati Children’s Hospital Medical Center
ASPHO is the only professional organization dedicated solely to the professional development and interest of subspecialists in pediatric hematology/oncology. You have the opportunity as an ASPHO member to make a difference by advocating on behalf of the profession. Here are some tips for advocacy involvement as a pediatric hematologist/oncologist.
MoC – Member of Congress, which includes Senators and Representatives
Senator – One of two people elected to represent each state for a 6-year term in the Senate. Senators have a Washington, DC, office and additional offices throughout their state.
Representative – A person elected to represent a district within a state or the District of Columbia for a 2-year term in the House of Representatives. Representatives have a Washington, DC, office as well as an office in their district.
Ask – What you want your legislator to do, ideally a concrete action of which they are capable, described in a single sentence
- Find the names and contact information for your legislators on the internet.
- Enter the telephone numbers for your legislators in your cell phone. Consider entering their entire name as a first name and use a term like “senator” or “representative” as the last name for ease of access.
- Bookmark the web pages of your legislators for quick access when you want to send them a message.
- Sign up for e-mails, newsletters, or e-newsletters from your legislators so that you know where they stand on issues as well as details about upcoming events such as town hall meetings.
- Keep track of where your legislators stand on issues and what they are doing with a site like Vote Smart.
Keep in Mind
- Your elected officials care about the people they represent (i.e., the voters who will reelect them). You will have the greatest impact on officials who represent you.
- You can be clear and persistent and remain respectful. Establishing rapport and being nice is important. Following through and requesting accountability are also important.
- Be clear and concrete about your ask.
- Tell a personal story or make a connection to emphasize the importance of your ask.
ASPHO’s 30th Annual Meeting will be held April 26–29, 2017, in Montréal, Québec, Canada, at the Montréal Convention Center. “What's Happening in DC? A Look at ASPHO Advocacy Efforts” will be held on Saturday, April 29, 2017, at 8 am. Register for the annual meeting.
ASPHO issued a joint statement with the American Society of Hematology (ASH), American Association for Cancer Research (AACR), Association of American Cancer Institutes (AACI), American Society for Radiation Oncology (ASTRO), and the Lungevity Foundation expressing concern with the Administration’s executive order that has denied U.S. entry to people who bring unique expertise to the practice of medicine and the conduct of cancer and biomedical research.
On February 3, 2017, Senators Jack Reed (D-RI), Shelley Moore Capito (R-WV), Chris Van Hollen (D-MD) and Johnny Isakson (R-GA) as well as Representatives Michael McCaul (R-TX), Jackie Speier (D-CA), Mike Kelly (R-PA) and G.K. Butterfield (D-NC) reintroduced the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act (H.R. 820/S. 292).
The Childhood Cancer STAR Act of 2015 (H.R. 3381, S. 1883) was passed by the U.S. House of Representatives in the closing days of the 114th Congress, but did not clear the Senate before the end of the session. Chair Lamar Alexander (R-TN) and the Senate Health, Education, Labor, and Pension (HELP) Committee have committed to work with the Alliance for Childhood Cancer to get the STAR Act moved through with the HELP Committee and moved to the full Senate in the first quarter of 2017. Read the Alliance for Childhood Cancer Press Release.
On Tuesday, December 13, 2016, President Obama signed the 21st Century Cures Act into law. The Act allows for advancements in the discovery and development of life-saving and life-improving therapies. Specifically, it devotes $1.8 billion for the Beau Biden Cancer Moonshot, the initiative that was led by Vice President Joe Biden and named after his son former Delaware Attorney General Beau Biden, who died in 2015 of brain cancer. The 21st Century Cures Act also directs approximately $4.8 billion over 10 years for various research initiatives at NIH and an extra $500 million to the FDA over the next 9 years to carry out changes required by the bill to some of its drug and device approval processes. Provisions specific to pediatrics include the following:
- Reauthorization of the Pediatric Priority Review Voucher Program (Advancing Hope Act) through 2020
- Collaboration with the national research institutes and national centers that carry out activities involving pediatric research
- NIH to encourage a global pediatric clinical study network by providing grants, contracts, or cooperative agreements to support new and early stage investigators who participate in the global pediatric clinical study network
- Health and Human Services (HHS) to engage with clinical investigators and appropriate authorities outside of the United States, including the European Union, during the formation of the global pediatric clinical study network to encourage the participation of such investigator and authorities
- The manufacturer or distributor of one or more investigational drugs for the diagnosis, monitoring, or treatment of one or more serious diseases or conditions must make Expanded Access/Compassionate Use policies available, such as by posting on a publicly available website.
On January 17, 2017, the Food and Drug Administration (FDA) officially launched the Oncology Center of Excellence that was established as part of the Cancer Moonshot Initiative. Richard Pazdur, MD, will lead this organization that will provide cross-center coordination of oncology product clinical review within the FDA. The full press release is available on the FDA website.
Former Vice President Joe Biden and his wife, Jill, announced that the formation of the Biden Foundation, a non-profit organization focused on policy issues such as fighting cancer, preventing sexual assault, supporting military families and promoting education. Read more in this Washington Post article.
The Trump Administration sent a memorandum to all agencies ordering them to halt all new and pending federal regulations. Additionally, under the Congressional Review Act, the Administration can go back and review regulations that took effect within 60 legislative days after they have been submitted to Congress or after they are published in the Federal Register. Regulations of importance to ASPHO include HHS poverty guidelines, which are updated annually, and are used to determine eligibility for government health programs such as Medicaid, Medicare Part D, Children’s Health Insurance Program (CHIP), and ACA tax credits. FierceHealthcare has the full scoop in this article.
Rep. Tom Price’s (R-GA) confirmation by the Senate as Secretary of the Department of Health and Human Services could happen as early as this week. Find out more about Price’s confirmation in this article from The Hill.
In an e-mail to NIH staff, current Director Francis Collins, MD PhD, shared that he is being held over as NIH Director in the Trump Administration.
Rep. Greg Walden (R-OR), Chair of the House Energy and Commerce Committee, stated that he will introduce a bill aimed at protecting people with preexisting conditions in the event that the Affordable Care Act is repealed. Read more in this article from The Hill.
For more information on our coalition partners and activities, here are some helpful links:
Please visit our Health Policy & Advocacy section for past issues of Advocacy Brief.