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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On February 12, 2018, the president released the proposed U.S. budget for FY19. Overall, the U.S. Department of Health and Human Services (HHS) would receive $95.4 billion under the proposal. According to Alex Azar, Secretary of HHS, the budget reflects the administration’s four main priorities: funding for the opioid crisis, reducing the cost of prescription drugs, increasing access and affordability of health insurance, and encouraging Medicare to focus on quality and not fee-for-service.
The biggest overall focus of the HHS budget proposal is funding for the opioid crisis. This portion of the budget reflects a five-part strategy: improving access to prevention, care and treatment, increasing the availability of overdose-reversing drugs, greater public health data collection, supporting pain and addiction research, and supporting better practices for pain management. The proposal is seeking nearly $17 billion in funding for opioid-related activities, but there is the concern that one unintended consequence would be difficulty obtaining opioids for palliative care measures. How palliative pain care would be affected is unclear.
A majority of important programs for pediatric hematologists and oncologists would be cut, affecting doctors and patients alike. The budget discontinues funding for the Children’s Hospital Graduate Medical Education Program, a program that helps freestanding children’s hospitals train residents. Instead, all funding for graduate medical education would be consolidated into one capped grant program. Additionally, the National Cancer Institute would see a $24 million decrease in funding for FY19. The President’s budget would cut Medicaid spending by $1.4 billion over the next 10 years and convert the program to block grants or per-person capped spending. Medicaid covers nearly 36 million children. Cutting funding would mean that some portion of children covered by Medicaid would lose access to early disease detection and treatment.
Keep in mind that the president’s budget is merely a suggestion. Congress ultimately decides what to fund and how to fund it, but the budget represents an administration’s priorities. The FY18 budget also proposed steep cuts to programs and many of those cuts have not been enacted. Entitlement programs like Medicaid have faced steep cuts in the past but funding has been restored by a bipartisan Congress. Because the entire House of Representatives and one-third of the Senate seats are up for reelection November 2018, lawmakers may not be willing to deviate from current spending levels.
Legislative/Regulatory News
ASPHO Attends Alliance for Childhood Cancer Meeting
ASPHO member Eric Sandler, MD, attended the annual Alliance for Childhood Cancer (ACC) meeting on February 21. Sandler and Wendy Darlington, MD, serve on the Alliance as part of the Advocacy Committee charge to collaborate with other organizations as appropriate to achieve identified priorities. During this meeting, the group discussed proposed legislation including NCI budgets, the STAR Act, and the Pediatric Research Equity Act. The ACC also is working with the World Health Organization and member organizations to participate in international advocacy on childhood cancer. ASPHO will continue to monitor developments within this coalition.
Health care in 2018 will more stable, but we will continue to see some instability with the Affordable Care Act, value-based care, and bad hospital debt.
The healthcare market will focus on value, with mergers and acquisitions focusing on high-value care.
Providers will need to shift their focus to acquiring new patients and engaging patients in their own health care.
The use of data and analytics in health care will continue to grow.
Rising drug prices will lead to federal interventions that increase competition.
Creating interoperable apps and other healthcare technology will help lead to the effective use of data.
ASPHO Signs on to Sickle Cell Letter
On February 23, 2018, ASPHO signed on to a letter supporting the Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act (H.R. 2410) Senate companion bill. This legislation would increase the authority of the Centers for Disease Control and Prevention to carry out sickle cell programs, sickle cell complications, and the sickle cell trait.
CHIP Funding Renewed
After initially failing to renew the federal Children’s Health Insurance Program (CHIP) that covers 9 million children annually, CHIP has been reauthorized for 10 more years. Prior to reauthorization, some states began telling its CHIP recipients that funding was going to run out, but the CHIP funding ensures that children will have access to the health care they need.
STAR Act Letter Passes Senate, Moves to House
The Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act of 2017 passed the Senate on March 22, 2018. This represents a critical victory for the legislation. The STAR Act is a comprehensive bill that would 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. Should this legislation pass the House, it would expand existing efforts to collect biospecimens of childhood cancer patients enrolled in NCI-sponsored clinical trials to collect and maintain relevant clinical, biological, and demographic information on all children, adolescents, and young adults with cancer.
This bill also authorizes grants to be awarded to state cancer registries to identify and track incidences of child, adolescent, and young adult cancer and enhance research on the late effects of childhood cancers, including conducting a study on insurance coverage and payment of care for childhood cancer survivors. This legislation must now pass the House of Representatives, where the bill has 362 co-sponsors. The Act has been sent to the House Energy and Commerce Committee.
ASPHO Supports the Peer-Reviewed Cancer Research Program
ASPHO joins the Alliance of Childhood Cancer in supporting funding for the Peer Reviewed Cancer Research Program (PRCRP), a program from the Department of Defense (DOD) that supports research in cancer relevant to those in military service and their families and encourages the DOD to create a separate program for adolescent, young adult, and pediatric cancer. The PRCRP promotes important research for cancer prevention, detection, treatment, and survivorship.
Support for this program has the opportunity to find breakthroughs in cancer research. If you are interested in exploring these funding opportunities, please see the pre-announcement. As the FY18 Defense Appropriations bill has not been passed, there are no funding opportunities for the program yet. The program announcement and general application instructions are anticipated to be available at grants.gov in April 2018.
ASPHO Supports Appropriations Funding
ASPHO joins the Alliance of Childhood Cancer in supporting FY19 funding for the National Institutes of Health (NIH) and the National Cancer Institute (NCI). The letter supports a $2 billion increase from last year’s budget, plus a $215 million increase from 21st Century Cures funding, for total funding of over $38 billion for the NIH; as well as a $400 million plus increase for a total funding of over $6.2 billion for the NCI.
Alex Azar Confirmed as HHS Secretary
Alex Azar, a former pharmaceutical executive who also previously worked as Deputy Secretary of Health and Human Services under George W. Bush, was sworn in as the Secretary of Health and Human Services on January 29, 2018. During his confirmation hearings, Azar said that issues relating to high drug pricing, affordability, value, and opioids would be his top priorities once in office.
Join a Sickle Cell Education Online Community
The web platform oneSCDvoice has been created by the Sickle Cell Disease Coalition to help connect and empower patients with sickle cell disease. This site features an online social community, educational resources, news and events updates, and a comprehensive page on clinical trial education. Please consider sharing this resource with your sickle cell patients.
CDC Director Resigns
Center for Disease Control (CDC) Director Brenda Fitzgerald resigned on February 7, 2018, after it was revealed that she had invested in tobacco and pharmaceutical stocks while CDC director. Fitzgerald was under scrutiny from some members of Congress due to potential conflicts of interest with other stock holdings. Dr. Robert R. Redfield Jr. has been appointed as CDC Director.
FDA Grants Drug Approval
The U.S. Food and Drug Administration recently granted regular approval to hydroxyurea for use in pediatric patients with sickle cell disease. Read more here.
For more information on our coalition partners and activities here are some helpful links:
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2 × SELECT c.id, c.asset_id, c.access, c.alias, c.checked_out, c.checked_out_time, c.created_time, c.created_user_id, c.description, c.extension, c.hits, c.language, c.level, c.lft, c.metadata, c.metadesc, c.metakey, c.modified_time, c.note, c.params, c.parent_id, c.path, c.published, c.rgt, c.title, c.modified_user_id, c.version, CASEWHENCHAR_LENGTH(c.alias) != 0 THENCONCAT_WS(':', c.id, c.alias) ELSE c.id END as slug FROMv311_categories as c LEFTJOINv311_categoriesAS s ON (s.lft <= c.lft AND s.rgt >= c.rgt) OR (s.lft > c.lft AND s.rgt < c.rgt) LEFTJOIN (SELECT cat.id as id FROMv311_categoriesAS cat JOINv311_categoriesAS parent ON cat.lft BETWEEN parent.lft AND parent.rgt
1 × SELECT m.published, m.id, m.title, m.module, m.position, m.content, m.showtitle, m.params,am.params as advancedparams, 0 as menuid, m.publish_up, m.publish_down FROMv311_modulesAS m LEFTJOINv311_extensionsAS e ON e.element = m.module AND e.client_id = m.client_id LEFTJOINv311_advancedmodules as am ON am.moduleid = m.id
1 × SELECT a.id, CASEWHENCHAR_LENGTH(a.alias) != 0 THENCONCAT_WS(':', a.id, a.alias) ELSE a.id END as slug, CASEWHENCHAR_LENGTH(cc.alias) != 0 THENCONCAT_WS(':', cc.id, cc.alias) ELSE cc.id END as catslug FROMv311_contentAS a LEFTJOINv311_categoriesAS cc ON cc.id = a.catid
1 × SELECT `m`.`tag_id`,`t`.* FROM `v311_contentitem_tag_map` AS m INNERJOIN `v311_tags` AS t ON `m`.`tag_id` = `t`.`id`
1 × SELECT* FROMv311_categories
1 × SELECT a.id, a.asset_id, a.title, a.alias, a.introtext, a.fulltext, CASEWHEN badcats.id is null THEN a.state ELSE 0 ENDAS state, a.catid, a.created, a.created_by, a.created_by_alias, CASEWHEN a.modified = '0000-00-00 00:00:00' THEN a.created ELSE a.modified END as modified, a.modified_by, a.checked_out, a.checked_out_time, a.publish_up, a.publish_down, a.images, a.urls, a.attribs, a.version, a.ordering, a.metakey, a.metadesc, a.access, a.hits, a.metadata, a.featured, a.language, a.xreference,c.title AS category_title, c.alias AS category_alias, c.access AS category_access,u.name AS author,contact.id as contactid,parent.title as parent_title, parent.id as parent_id, parent.path as parent_route, parent.alias as parent_alias,ROUND(v.rating_sum / v.rating_count, 0) AS rating, v.rating_count as rating_count FROMv311_contentAS a LEFTJOINv311_categoriesAS c on c.id = a.catid LEFTJOINv311_usersAS u on u.id = a.created_by LEFTJOIN ( SELECT contact.user_id, MAX(contact.id) AS id, contact.language FROMv311_contact_detailsAS contact
1 × SELECT* FROMv311_languages
1 × SELECT id,oldurl,newurl FROM `v311_sh404sef_urls`
1 × SELECT `params` FROMv311_extensions
1 × SELECT params FROMv311_modules
1 × SELECT folder AS type, element AS name, params FROMv311_extensions
1 × SELECT* FROM `v311_osemsc_configuration
1 × SELECT* FROM `v311_osemsc_content`
1 × SELECT id, home, template, s.params FROMv311_template_styles as s LEFTJOINv311_extensions as e ON e.element=s.template AND e.type='template' AND e.client_id=s.client_id
1 × SELECT b.id FROMv311_usergroupsAS a LEFTJOINv311_usergroupsAS b ON b.lft <= a.lft AND b.rgt >= a.rgt
