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.
ASPHO Celebrates National Sickle Cell and Childhood Cancer Awareness Months
September is National Sickle Cell Awareness Month and National Childhood Cancer Awareness Month which ASPHO has celebrated all month long.
President Joe Biden issued these essential proclamations supporting the awareness months for sickle cell and childhood cancer. ASPHO applauds the Biden-Harris Administration for making awareness of these issues a national priority.
Throughout September, ASPHO conducted an awareness campaign to highlight relevant sickle cell and childhood cancer issues and inform members of awareness raising efforts at a variety of institutions. Members can view the campaign on social media, and also find videos from Advocacy Committee members sharing ASPHO’s accomplishments and advocacy initiatives on aspho.org/advocacy.
ASPHO also shared resources and events through the Sickle Cell Disease Coalition’s (SCDC) National Sickle Cell Awareness Month 2021: Knowledge is Power Pt. 2! website.
Special Feature Contribution
Telehealth in Pediatric Hematology/Oncology: ASPHO Survey Results and Future Directions
By Anshul Vagrecha, MD, ASPHO Advocacy Committee Member; Julie Jaffray, MD, ASPHO Advocacy Committee Member; and Dominic Sawaya, JD MPPA, Manager, Health Policy and Advocacy
The ASPHO 2020 Telehealth Survey
The ongoing pandemic due to coronavirus disease 2019 (COVID-19) has undoubtedly had far reaching consequences and implications. Amid fighting this pandemic from the front lines, hospitals and healthcare workers have also had to create alternative solutions to delivering ambulatory services (both COVID-19 related and routine) and to their patients by reassessing and repurposing their existing tools. Many healthcare organizations have initiated or expanded their telehealth capabilities through this pandemic to achieve this objective. ASPHO’s Advocacy Committee and Practice Committee sought to understand the current landscape of telehealth in pediatric hematology/oncology, the potential pitfalls as well as identify any opportunities where the committee could advocate for better solutions on behalf of the providers and our patients.
The ASPHO 2020 Telehealth Survey was an online survey that was emailed to 1,846 ASPHO members in December 2020. Of the 210 members who responded, 90% were attending physicians with the majority having more than 20 years of experience in the field.
One of the most striking findings was while 84% of the respondents did not participate in telehealth prior to the pandemic, around 91% of the respondents mentioned that they have utilized telehealth services during the pandemic and are continuing to do so. The majority of respondents (52%) reported telehealth had a positive impact on their practice and/or quality of life, and 77% noted there has been a positive impact for patients and families. The benefits include increased access to care, decreased wait times for appointments (and potentially decreased needs for urgent care and emergency department visits), reduced risk of exposure to communicable infections, and decrease in transportation challenges for families. An overwhelming majority (92.8%) of the respondents would like to see continuation of telehealth beyond the pandemic.
The survey identified several barriers to telehealth, the most significant being lack of access to reliable internet for the patients, cited by 77% of respondents. Other barriers included usability of the telehealth software (46%), language and cultural barriers (45%) and scheduling difficulties (43%). Additional results and insights are available in the ASPHO 2020 Telehealth Survey Executive Summary.
Future Directions for Policy and Advocacy
The use of telehealth has important policy implications. A recent report by the Centers for Disease Control and Prevention (CDC) noted that there was an increase of 154% in the use of telehealth in the first three months of 2020 compared to the same period in 2019 and majority of these visits were not related to COVID-19.1 On March 6, 2020, the Centers for Medicare & Medicaid Services (CMS) introduced some key waivers relating to telehealth.2 These provisions included several positive changes like allowances to provide out-of-state services for patients; allowing several diverse types of providers, federally qualified health centers and rural clinics/hospitals to provide telehealth services; provider reimbursement and waived cost sharing models for patients. Such provisions have helped accelerate the growth of telemedicine and allowed providers to deliver health care services safely and effectively to their patients. The question remains whether these policies should continue beyond the pandemic.
There exist many barriers to obtaining health care in the United States. The CDC reported that 4.5 % of Americans do not obtain health care due to the associated prohibitive costs3 or that 3.6 million Americans do not have the necessary transportation to get to their appointments.4 Other barriers including patients living in rural communities without access to subspecialist care, geographic and economic barriers, health inequity and income inequality also play a major factor. While telehealth is not an all-encompassing solution to overcome the many healthcare barriers, it is certainly proven to be a powerful and effective tool that is now more easily available than ever.
In March 2021, the American Rescue Plan (ARP) Act of 2021 (also referred to as the COVID-19 Stimulus Package) was signed into law by President Joe Biden, which provides $1.9 trillion economic stimulus to combat COVID-19 and address related issues. While the ARP does not include telehealth specifically, it makes significant investments in expanded internet and broadband access. These investments are focused on reducing consumer prices and building out network infrastructure, which will improve access to telehealth and improve digital equity.5 ASPHO plans to continue advocating for expanded internet access.
The survey helped the Advocacy Committee identify many action items that ASPHO can continue to advocate for. Expanding the use of telehealth after the pandemic, allowing the continuation of reimbursement for telehealth services and the use of these services for patients from underserved areas, out-of-state patients, and patients with physical barriers to access care are some of the important action items. Living through this devastating crisis, the healthcare industry and the government have developed better policies and reimbursement models, which has acted as a proof of concept for telehealth for our patients. It would also be timely for ASPHO to advocate for our patients and our community to find telehealth solutions that could help improve care in the post-pandemic future.
- Koonin LM, Hoots B, Tsang CA, et al. Trends in the Use of Telehealth During the Emergence of the COVID-19 Pandemic — United States, January–March 2020. MMWR Morb Mortal Wkly Rep 2020;69:1595–1599. DOI: http://dx.doi.org/10.15585/mmwr.mm6943a3
- Centers for Medicare & Medicaid Services. September 2021. Medicare FFS Response to the PHE on COVID-19: https://www.cms.gov/files/document/se20011.pdf
- Centers for Disease Control and Prevention, National Center for Health Statistics. July 2021. Access to Health Care: https://www.cdc.gov/nchs/fastats/access-to-health-care.htm
- Health Research & Educational Trust, American Hospital Association. November 2017. Social determinants of health series: Transportation and the role of hospitals: http://www.hpoe.org/Reports-HPOE/2017/sdoh-transportation-role-of-hospitals.pdf
- Tomer A and George C, The Brookings Institution. June 2021. The American Rescue Plan is the broadband down payment the country needs: https://www.brookings.edu/research/the-american-rescue-plan-is-the-broadband-down-payment-the-country-needs
ASPHO and the Alliance Meet with Biden-Harris Administration and Provide Input to NIH on ARPA-H
ASPHO met with the Biden-Harris Administration in August to discuss the Advanced Research Projects Agency for Health (ARPA-H) as it is being developed. President Biden has proposed ARPA-H as a new agency intended to drive transformational innovation in biomedical research. The meeting, held with staff from the White House Office of Science and Technology Policy (OSTP), was organized by the Alliance for Childhood Cancer (Alliance). If created, ARPA-H would exist within the National Institutes of Health (NIH) to carry out the goal of developing breakthroughs that prevent, detect, and treat diseases like Alzheimer’s, diabetes, and cancer.
Specific input was provided by ASPHO to the NIH in addition to the meeting. In an Alliance letter, it was noted that childhood cancer research uniquely depends on the federal government as its primary source of funding, unlike adult cancer where the majority of funding for drug development comes from the pharmaceutical industry.
ARPA-H would be focused on solving specific problems, similar to the high-risk, high-reward research done by the Defense Advanced Research Projects Agency (DARPA). The Alliance is facilitating additional outreach to help ensure that childhood cancer is included in ARPA-H’s scope of work.
ASPHO Joins the ASH Sickle Cell Advocacy Forum
ASPHO continues to advocate for funding for federal sickle cell disease (SCD) programs and in order to strengthen its partnership with American Society of Hematology (ASH), ASPHO joined the newly created ASH Sickle Cell Advocacy Forum. The focus of this work is to enhance SCD programs including the Sickle Cell Data Collection Program at the Centers for Disease Control and Prevention (CDC) and the Health Resources and Services Administration’s (HRSA) Sickle Cell Disease Treatment Demonstration Program.
Pediatric Subspecialty Loan Repayment Program Advocacy
ASPHO continued its partnership with the American Academy of Pediatrics (AAP) on advocacy for the Pediatric Subspecialty Loan Repayment Program (PSLRP) and signed on to letters thanking health leaders in the House for their support.
Most notably, the letters thanked Representative Rosa DeLauro (D-CT-03), Chair of the House Appropriations Committee, and Representatives Kim Schrier (D-WA-08) and John Joyce (R-PA-13). Representative Schrier is the first pediatrician in Congress and Representative Joyce is a dermatologist. As physicians in Congress their leadership helped secure $25 million in funding for the PSLRP which was included in the House Fiscal Year (FY) 2022 Labor, Health and Human Services (HHS) Education and Related Agencies appropriations bill. Funding needs to be approved in the Senate as well, but this is a major step forward.
Senate Resolution on DIPG Awareness Day
ASPHO and the Alliance sent a letter thanking Senators Marco Rubio (R-FL) and Jack Reed (D-RI) for introducing and working to pass the Senate resolution to designate May 17 as DIPG Awareness Day. This awareness raising resolution and encourages research into cures for diffuse intrinsic pontine glioma (DIPG) and pediatric cancers in general.
ASPHO Sends Gabriella Miller Kids First Research Act 2.0 Endorsement Letter to Senate
ASPHO and the Alliance continued their support for the bipartisan Gabriella Miller Kids First Research Act 2.0 by sending an endorsement letter to the Senate. The letter thanked Senators Tim Kaine (D-VA), Bill Cassidy (R-LA), Mark Warner (D-VA), and Jerry Moran (R-KS) and emphasized the need to authorize resources to improve childhood cancer treatments.
For more information on our coalition partners and activities here are some helpful links:
American Society of Hematology
American Academy of Pediatrics
Please visit our Health Policy & Advocacy website section for past issues of Advocacy Brief.