The ASPHO Advocacy Brief
Welcome to the Advocacy Brief, a quarterly e-newsletter from the American Society of Pediatric Hematology/Oncology that informs 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.
Special Feature Contribution
A conversation between Lori Luchtman-Jones, MD, and Francis (Joe) Real, MD MEd.
Lori Luchtman-Jones, MD, Pediatric Hematologist/Professor of Pediatrics at Cincinnati Children's Hospital Medical Center/University of Cincinnati and ASPHO Advocacy Committee Member, interviewed her colleague Francis (Joe) Real, MD MEd, General Pediatrician/Assistant Professor of Pediatrics at Cincinnati Children's Hospital Medical Center/University of Cincinnati, to learn more about strategies and tactics for addressing vaccine hesitancy in pediatric hematology/oncology and pediatrics in general.
Luchtman-Jones: Joe, thanks for talking with me about a subject that raises a lot of anxiety in clinicians.
Real: Thank you for inviting me. I enjoy providing clinicians with a mental framework to guide conversations around vaccine hesitancy. Even more, I enjoy providing clinicians a safe and realistic environment to practice these challenging discussions. That is why our clinic uses virtual reality simulations to support clinicians’ communication skills. Here is a prior article describing our efforts around the influenza vaccine: PMID: 28126612.
Luchtman-Jones: How did you decide to study vaccine hesitancy?
Real: Even prior to the COVID-19 pandemic, we were seeing increased rates of vaccine hesitancy. In fact, the World Health Organization declared vaccine hesitancy a top ten threat to global health in 2019. Clinicians are trusted messengers when it comes to addressing vaccine hesitancy and can positively impact parental attitudes. However, clinicians often feel uncomfortable having such conversations. I wanted to give clinicians an opportunity to practice high-quality vaccine recommendation behaviors to increase their competence and comfort with such discussions to increase vaccine uptake. I am specifically interested in making sure our residents leave training with these critical skills – as research suggests that what residents learn in residency impacts their future care provision long-term.
Luchtman-Jones: Why do you think vaccination is such an emotional topic for health care providers and their patients/families?
Real: For families, it can be challenging to identify credible sources of information. Social media specifically can perpetuate misinformation that negatively impacts parental attitudes toward vaccination. With the COVID-19 pandemic, the topic of vaccination has been magnified with some individuals taking pride in acceptance while vaccination is stigmatized in other communities. For providers, discussions around vaccine hesitancy take time and can be emotionally draining especially when vaccination is declined leaving a patient or family vulnerable to disease.
Luchtman-Jones: Over the late fall and winter, we’ve been encouraging our patients and families to get both influenza and COVID vaccines. Do you perceive differences in vaccine hesitancy for these two vaccines?
Real: Research would suggest that the predominating concern for both the influenza and COVID vaccines is specifically safety. Patients and families ultimately want to do what is best and safe for their loved ones. That being said, it is important to use open-ended questions (e.g., tell me more statements) to get a sense of the source of hesitancy for a particular vaccine. There are a wide range of potential concerns reported for the COVID-19 vaccine for instance. You want to specifically understand a family’s sources of hesitation so you can provide targeted information to allow them to make an informed decision.
Luchtman-Jones: Can you take us through your approach to addressing vaccine hesitancy?
Real: For standard vaccines including the influenza vaccine, it can be helpful to use a presumptive announcement approach. That is – you present the vaccine presuming acceptance (e.g., saying, “It looks like you are due for the flu vaccine so we can go ahead and do that before you leave today.”). This tends to be more effective than a participatory approach to counseling (e.g., saying, “Are you interested in the flu vaccine?”) which may unintentionally suggest the vaccine as optional or not recommended by the provider. For the COVID-19 vaccine, it might not be appropriate to use a presumptive announcement given a lack of long-term safety and effectiveness data. Instead, lead with listening and use open-ended questions to understand the source of hesitancy. Other motivational interviewing skills such as reflection on patient statements, asking permission to provide information, and use of supporting and affirming statements are other helpful techniques to build rapport and enhance motivation to change. For all vaccines, your recommendation matters. A clinicians’ strong recommendation for vaccination has consistently been shown to be the most significant predictor of vaccine uptake.
Luchtman-Jones: How do you respond to the patient or parent who is grappling with the very real history of abuses in human research (such as the Tuskegee Study) or the perception of inequalities in medical care delivery as a reason to decline vaccination?
Real: It is important to lean into such conversations and recognize the lived experiences of racism. In these cases, I try to acknowledge, validate, destigmatize, and express shared values. This might look something like, “Your feelings are normal. Racism is a powerful force in our country. It is not fair how black people have been treated in medical research. I’m recommending the vaccine because I have reviewed the studies. I know we both want to keep your child as healthy as possible, and I want him to be protected when he leaves here today.”
Luchtman-Jones: Joe, you have given me a lot to think about. Here is my final question: Do you ever get nervous talking with families about vaccine refusal, and if so, how do you push through it?
Real: This is hard work, but it is so important. Vaccination is one of the most effective public health interventions after clean water. During a busy day in clinic, I may be tempted to not ask that probing question when a family declines a vaccine as I know it will take time and effort to respond appropriately. However, I then remind myself that it is my responsibility to ensure every family is making an informed decision, and I want to end my workday knowing that I did my absolute best to protect all my patients. Keep that grit. Our patients are worth it.
Vaccination Resources From ASPHO Advocacy Committee Member Institutions:
- Children's Hospital Los Angeles/University of Southern California – Kids and the COVID-19 Vaccine: Your Questions Answered
- Children's National Hospital/The George Washington University – Coronavirus Vaccine FAQs
- Cincinnati Children's Hospital Medical Center/University of Cincinnati – Why Should My Child Get Vaccines?
- St. Louis Children's Hospital/Washington University in St. Louis – The Importance of Being Immunized
During his first State of the Union address on March 1, President Joe Biden called for a reinvigorated focus on cancer research to "end cancer as we know it.”
The inclusion of cancer research in the State of the Union address is significant and ASPHO thanks President Biden for keeping this a vital priority. The reignited Cancer Moonshot as well as childhood cancer initiatives, the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act and the Childhood Cancer Data Initiative (CCDI), have the potential to substantially advance research and treatment.
ASPHO joined nearly 100 other cancer organizations to urge Congress to fund Cancer Moonshot initiatives. The letter was co-organized by the American Cancer Society Cancer Action Network (ACS CAN) and the National Comprehensive Cancer Network (NCCN). A supporting press release was issued for President Biden’s reignited Cancer Moonshot initiative.
The $1.5T fiscal year (FY) 2022 omnibus funding agreement, the Consolidated Appropriations Act, 2022, was passed by Congress and was signed into law by President Joe Biden on March 15. Appropriations asks ASPHO advocated for with the American Academy of Pediatrics (AAP) and the Alliance for Childhood Cancer (Alliance) were included and have become law.
The omnibus provided $5M to fund the Pediatric Subspecialty Loan Repayment Program (PSLRP) which ASPHO advocated for with AAP. This is an initial investment which will be available to the Health Resources and Services Administration (HRSA) and will help HRSA start this program.
Programs and funding that ASPHO advocated for with the Alliance that were included are as follows:
- Childhood Cancer STAR Act received $30M and CCDI received $50M for FY 2022 – full funding for both programs.
- National Institutes of Health (NIH) received $45B for FY 2022, an increase of $2.25B over FY 2021 enacted levels.
- National Cancer Institute (NCI) received $6.9B for FY 2022, an increase of $353M over FY 2021. This also includes $194M for the Cancer Moonshot.
- The omnibus provided $1B to create the Advanced Research Projects Agency for Health (ARPA-H) within the Health and Human Services (HHS) Office of the Secretary. Funding is available for three years.
- Gabriella Miller Kids First Research Act received $12.6M for FY 2022.
- Peer Review Cancer Research Program (PRCRP) received $130M for FY 2022, a $15M increase over FY 2021. The PRCRP also includes each research category the Alliance requested in our FY 2022 Department of Defense (DOD) letter: pediatric, adolescent and young adult cancers; pediatric brain tumors; neuroblastoma; sarcoma; germ cell cancers; blood cancers; lymphoma; and thyroid cancer.
This is inspiring progress for childhood cancer and ASPHO thanks Congress, the Biden-Harris Administration, and our coalition partners.
The omnibus funding agreement overview is available here.
The American Society of Hematology (ASH) and ASH Research Collaborative (ASH RC) have created the Sickle Cell Disease Learning Community to help improve the course of life and quality of life of those living with sickle cell disease (SCD).
ASPHO looks forward to continued collaboration with ASH on SCD, including sharing vital resources such as the Sickle Cell Disease Learning Community which is associated with the James M. Anderson Center for Health Systems Excellence at Cincinnati Children’s Hospital Medical Center.
ASPHO advocacy leaders participated in the American Association for Cancer Research's (AACR) virtual congressional briefing in February announcing the release of the AACR Report on the Impact of COVID-19 on Cancer Research and Patient Care. Remarks from Senators Amy Klobuchar (D-MN) and Roy Blunt (R-MO) where included. Senators Klobuchar and Blunt underscored both the substantial gains cancer research has made thanks to federal funding and the need for continued advocacy in this area. The briefing also highlighted lessons learned during the COVID-19 pandemic that can be used to improve cancer research and patient care moving forward.
For more information on our coalition partners and activities, here are some helpful links: