The ASPHO Advocacy Brief
Welcome to the Advocacy Brief, a quarterly offering from the American Society of Pediatric Hematology/Oncology. The goal of this newsletter is to inform members about legislative and regulatory issues impacting the profession of pediatric hematology/oncology and the patients we serve.
ASPHO Bill Tracker
Visit ASPHO’s Legislative Tracking Chart to see a list of bills that ASPHO is monitoring.
September: Sickle Cell & Childhood Cancer Awareness Months, Government Funding, and Election Prelude
September is a vital month for ASPHO’s advocacy efforts as it is Sickle Cell Awareness Month and Childhood Cancer Awareness Month. ASPHO 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 mid-September, a CR is being negotiated in Congress and is expected with potential end dates in mid-December or mid-February.
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 Brief will bring special attention to these issues and focus on important advocacy efforts leading up to the election and the government funding deadline.
Special Feature Contributions
The Patient Protection and Affordable Care Act and its Impact on Children and Young Adults with Cancer and Blood Disorders
By David S. Dickens, MD FAAP, ASPHO Advocacy Committee Member; Eric Sandler, MD, ASPHO Advocacy Committee Member and Alliance Liaison; and Dominic Sawaya, JD MPPA, Manager, Health Policy and Advocacy
Only ten years ago 46 million nonelderly Americans, roughly 18% of the population, were uninsured while health care expenditures had heightened to 17.4% of the GDP. This unstable balance between diminishing coverage and growing costs necessitated a law aimed to increase the affordability, accessibility and quality of health care across the entire system. In 2010, the Affordable Care Act (ACA) was enacted into law and progress began.
Payment and delivery reforms were created to decrease expenses such as reduced Medicare payments, value-based payment models, individual and employee mandates, maximum out of pocket payments and subsidies. Coverage and access provisions designed to insure and improve the health of more Americans included Medicaid expansion, the creation of essential health benefits, the elimination of lifetime or annual limits, the banning of pre-existing condition exclusions (“guaranteed issue”) and premium adjustments (“community rating”), as well as dependent coverage to the age of twenty-six years. The ACA introduced additional vital patient protections highly relevant to children and young adults with cancer and blood disorders, including coverage for routine costs of care for individuals participating in approved clinical trials, concurrent hospice/curative care coverage, and insurance claims and appeals, and external review processes.
Demonstrable improvements in some measurable aims of the ACA have occurred over the last decade. The percentage of uninsured nonelderly Americans dropped to a low of 10.6% by 2016. The percentage of uninsured young adults aged 19-25 years dropped by about half. Total Medicare expenditures are 200 billion dollars less than projected pre-ACA. Nationally, hospital acquired conditions have steadily declined and Medicaid expansion states have seen reductions in mortality from cardiovascular and end-stage renal disease. Notwithstanding, the ACA’s ideologic and financial underpinnings have generated numerous legal, constitutional and economic challenges which have begun to pull the threads on the ACA. The tax penalty for individual mandate noncompliance has been repealed, correlating with a recent increase in uninsured Americans by about 3% from its nadir. Cost-sharing reduction payments to insurers are now eliminated, leading to a ~20% increase in premiums. Market exchange marketing support has been cut by 90% and enrollment periods have been reduced in half, making it harder for people to sign up for ACA coverage. With the fundamental building blocks of this policy systematically removed, the ACA is already collapsing.
Perhaps it is easier to understand the importance of the protective elements of the ACA by envisioning patient care conversely, as if the policy were either functionally dismantled or entirely repealed. Imagine the uninsured population rising by at least 20 million at a time when hospitals are managing the financial crises ensuing from the current COVID-19 crises. Moreover, as the unemployment rates are in excess of 2010 levels at the time of writing this article (September 2020), non-employer-based insurance coverage could be even more necessary. Envision twice as many adolescent and young adults choosing to avoid medical care because they are uninsured, and the downstream impact on young adult cancer care, as well as the near half million Americans in need of childhood cancer survivorship care. Imagine consenting a family to a clinical trial, informing them that their medical costs may not be covered if they choose to enroll, with no recourse to appeal (as anathematic a task it is). What consequence would that have on clinical trial enrollment, progress in cancer care and health care disparities? Think of the patient with hemophilia who has annual and/or lifetime caps enforced for their product. Recall the time when enrollment onto hospice required foregoing any coverage for treatments deemed curative. Volumes of congressional testimony and countless hard-fought battles occurred in the late 2000’s to earn the oft omitted prefix to the actual name of the law, the Patient Protection and Affordable Care Act (PPACA).
Legal, political and economic scholars will continue to debate the merits and flaws respective to their areas of expertise. It is incumbent upon health care professionals, particularly pediatricians and patient advocacy groups, to contribute our part by reminding policymakers why patient protection was required in the first place. Partnership with one’s institutional government relations officers can both help harmonize one’s message with community members and connect with representatives. Collaborating with institutional colleagues and local patient advocates can strengthen one’s message. ASPHO offers resources to enhance one’s advocacy skills, build relationships with representatives as well as partner with a variety of other professional societies and coalitions. Through ASPHO involvement, the voices of pediatric hematologists/oncologists and the patients they represent can be amplified through meetings with and letters to Congress, the Department of Health and Human Services, the Centers for Medicare & Medicaid Services, and other agencies.
Advocacy of this magnitude is a time-consuming, non-revenue generating activity with unquantifiable rewards as it may be essential for increasing access and improving health outcomes. The time as well as emotional and professional investments required to have an impact in this space could pale in comparison to what ensues if the elements of patient protection in the PPACA are lost.
By Monica L. Hulbert, MD, ASPHO Sickle Cell Disease Coalition Liaison
The year 2020 has focused America’s attention on racial injustice like no prior year in most of our lifetimes. While the COVID-19 pandemic and accompanying economic recession affect all aspects of American society, the burden of both catastrophes falls disproportionately onto Black Americans. Furthermore, thanks to ubiquitous video recording capability, the ongoing terror of violence against Black Americans is exposed more explicitly than ever before. Increasingly, it is clear that the health of children and adults with sickle cell disease (SCD) is inextricably entwined with racial justice and healthcare equity.
You may know these statistics already: approximately 100,000 Americans, most of whom are Black, have SCD, but exact numbers are unknown due to lack of formal tracking mechanisms. On every measure of research investment, SCD lags behind childhood genetic diseases that do not predominantly affect Black people, notably cystic fibrosis and hemophilia. Curative therapy via stem cell transplant has been implemented very slowly, whereas transplant is widely recommended for children with thalassemia major. Americans with SCD have a high mortality risk in young adulthood that is not seen in other high-income countries, largely because of difficulty accessing hematology care and health maintenance.
However, there are more subtle ways in which systemic racial discrimination affects people with SCD. Twelve states, including most of the South, have not adopted Medicaid expansion under the Affordable Care Act, limiting access to disease-modifying treatments. Pervasive bias and false beliefs about drug abuse and pain in Black people result in under-treatment, while the paucity of effective treatments and poor implementation of existing therapies cause more frequent and chronic pain. Black Americans have a higher burden of medical debt, have less access to primary and specialized care, and are less likely to believe their doctors listen to their concerns. These disparities have deep roots in racism that pervades American social structures and policies.
Amidst all of this bad news, there are glimmers of hope. The Sickle Cell Disease Coalition (SCDC), of which ASPHO is a member, recently released its State of Sickle Cell Disease: 2020 Report Card. The report card shows modest gains since 2018 in areas of access to care, training and professional education, and global issues, but a slight decrease in research and clinical trials. The American Society of Hematology (ASH) published treatment guidelines for SCD care, and each guideline incorporated input from individuals affected by SCD. Medical schools are beginning to include anti-racism training in their curricula. Many schools supported anti-racism activities for the first time this summer. Children’s hospitals are recognizing their roles as part of the social safety net for families experiencing chronic illness, food insecurity, and school interruptions during the COVID-19 pandemic. These steps, while significant, are not enough: all levels of the medical system must address systemic racism. Medical societies like ASPHO and pediatric hematology/oncology training programs can contribute by investing in the “pipeline” of Black hematologists.
Today’s problems are not new, but today’s technology empowers us to learn, get involved, and implement remedies. The National Academies of Sciences, Engineering, and Medicine’s Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action describes the tasks ahead of us. We as pediatric hematologists and oncologists cannot remain separate from the work of anti-racism if we aim to help our patients live their healthiest, most successful lives. We must examine our personal attitudes and behaviors as well as the policies and practices of our medical institutions to identify those with a disparate impact on Black patients and especially children and adults with SCD. Do we engage in patient-centered care, investing as much time in educating patients about SCD pathophysiology and treatment as in consenting patients for cancer chemotherapy? Do we build a process in which children with SCD receive pain medications for an acute vaso-occlusive pain episode as rapidly as children with febrile neutropenia receive antibiotics? Do we ensure our patients with SCD have equal access to a social worker, education liaison, and mental health provider as our patients with cancer have? Do we advocate for guaranteed health insurance access for all Americans? In taking such actions, we will support our patients and communities to fully address the pain of SCD.
- Kendi IX. How to Be an Anti-Racist. New York: One World, 2019.
- National Academies of Sciences, Engineering, and Medicine. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. 2020. https://www.nationalacademies.org/our-work/addressing-sickle-cell-disease-a-strategic-plan-and-blueprint-for-action
- Ofoje A, Agbafe V, Forman HP, and Calhoun C. “Making medicine work for Black America: How Black students will answer the call for reform.” USA Today. July 15, 2020. https://www.usatoday.com/story/opinion/2020/07/15/health-care-black-americans-reform-column/5427075002/
- Power-Hays A and McGann P. When Actions Speak Louder than Words—Racism and Sickle Cell Disease. New England Journal of Medicine. 2020. DOI: 10.1056/NEJMp2022125. https://www.nejm.org/doi/full/10.1056/NEJMp2022125
- Wailoo K. Dying in the City of the Blues: Sickle Cell Anemia and the Politics of Race and Health. Chapel Hill: The University of North Carolina Press, 2001.
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 a SCDC member, ASPHO has endorsed the prior report cards. ASPHO reviewed and endorsed the 2020 Report Card and is thrilled to share it with members.
ASPHO 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.
On the legislative front, the dedicated funding amendment for the Sickle Cell Data Collection program at the Centers for Disease Control and Prevention (CDC) was included in the FY 2021 Labor, Health and Human Services, Education, and Related Agencies (Labor-HHS) appropriations bill, which the House passed in July. The amendment was introduced by Representatives Danny Davis (D-IL) and Michael Burgess (R-TX) and recommends $2 million in funding for the program. ASPHO mobilized our grassroots advocacy through social media to support this amendment and worked with the American Society of Hematology (ASH) to amplify the voices of ASPHO members.
As part of a continued response to SCD and blood shortages in the time of COVID-19, SCD and blood donation information is available on the ASPHO COVID–19 Resources page.
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. ASPHO 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 and an action alert.
On August 18, the Research to Accelerate Cures and Equity (RACE) for Children Act was fully implemented into law. The RACE for Children Act now requires that all adult cancer therapies in development, whose molecular target is substantially relevant to a pediatric cancer, must be studied in children's cancers as well. This gives pediatric oncologists increased access to novel therapies and gives patients access promising cancer drugs currently under development. ASPHO has supported the RACE for Children Act through Kids v Cancer and was part of the advocacy that resulted in it being signed into law in August 2017.
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.