From the Desk of Anne Levine
For all the changes that we have endured so far, there is more ahead as we transition to this next chapter at the Institute. While the way we operate will continue to look different in the months and perhaps years ahead, our mission remains the same as it has for more than 70 years – to deliver the best care possible for patients facing cancer, and to lead the research toward the cures of tomorrow.
One of the silver linings, as we have been calling them at Dana-Farber, that has come out of the pandemic has been our ability to very quickly scale up a digital cancer care program using telehealth services thanks to executive orders and regulations from the state and federal government during the public health emergency. These telehealth services include secure video conferencing and audio only communications which allow current Dana-Farber patients to stay connected to their providers, while allowing new patients to gain access to cancer care during these unprecedented times.
As we move forward to the recovery phase, once thing is clear: telehealth is here to stay at Dana-Farber as an integrated care option for our patients. Much advocacy will be needed in the days and months ahead to ensure the federal and state government allow continued access to telehealth services during the recovery process.
If you are a Dana-Farber patient, provider or caregiver interested in supporting advocacy to ensure access to digital cancer care via telehealth - or if you have used telehealth services at Dana-Farber and want to share your story - please contact advocacy@dfci.harvard.edu. Please look to future Legislative Action Network (LAN) newsletters for more information on our work to ensure our patients and caregivers continue to have the option to access digital cancer care services using telehealth.
Notes from Kate Audette
As we begin to move forward with a phased reopening across the state, the Dana-Farber Office of Government Affairs and Nursing and Patient Care Services, which over sees the Patient and Family Advisory Councils (PFACs) are excited to announce a new joint, graduate internship program for the upcoming 2020-2021 academic year.
The adult care and pediatric care PFACs at Dana-Farber include patients, family members, and staff who represent Dana-Farber's commitment to patient- and family-centered care by including the patient, family and provider voice in discussions and projects that advance the mission of Dana-Farber.
The primary responsibility of the graduate intern will be to prepare for, organize, and attend monthly PFAC meetings and to provide project management support. The graduate student will also work with the Dana-Farber Legislative Action Network (LAN), determining legislative priorities for the Institute and leading an independent advocacy focused project.
The graduate student would have the ability to work remotely for the internship, given the current COVID-19 pandemic. If at any point Dana-Farber resumes normal operations with a non-remote workforce, the student could decide to intern in person, dependent on interest and comfort level.
Ideal candidates would be graduate students studying social work, public health, public policy, community health, communications or another relevant field of study. Graduate students with an interest in patient advocacy or patient experience, government affairs/policy, and a deep commitment to equity preferred. Candidates must be available on Tuesday evenings from 4:00-8:00 pm to attend the monthly PFAC meetings.
Interested graduate students should send a resume and cover letter to Renee Siegel, Program Manager, Patient and Family Advisory Councils at Renee_Siegel@dfci.harvard.edu. For more information, please review the PFAC website and the LAN website.
Childhood Cancer Updates
Pediatric Palliative Care
Due to the COVID-19 pandemic and subsequent economic impact, work on the state fiscal year 2021 budget had been put on hold. As we start to move forward now, the Massachusetts state legislature is resuming work on the state budget.
One of the top state budget priorities of the Legislative Advocacy Network (LAN) is funding support for the Pediatric Palliative Care Program (State Budget Line Item 4590-1503), which funds community based pediatric palliative care services for children with life threatening and life limiting illnesses, including childhood cancer. These services, which are different than hospice, address the unmet needs of these children and include, but are not limited to, pain management, nursing, respite care and bereavement care if needed.
You can make your voice count by reaching out to your member of the Massachusetts House of Representatives and asking them to provide level funding at $4.8 million for the pediatric palliative care program. Prior to the pandemic, advocates had asked for an additional $1.2 million in funding to ensure all children who qualify for these services receive them without having to be placed on a wait list. Given the current financial crisis in the state, advocates have opted to ask for level funding in the same amount as the current fiscal year.
Click here to act now and advocate for the pediatric palliative care program on the LAN website.
Kids First 2.0 Legislation Introduced in Congress
The Gabriella Miller Kids First Research Act 2.0 (H.R. 6556) was introduced in Congress in April. Kids First 2.0 would ensure continued funding towards the Kids First Pediatric Research Program at the National Institutes of Health (NIH).
Kids First was established in 2014 and funds much-needed research on rare childhood cancers, birth defects, and other rare pediatric diseases. Since it was enacted the bill has provided $75 million to childhood cancer and disease research. Funding for the 2014 research program expires in the Federal Fiscal Year 2023 and the Kids First 2.0 legislation would ensure the long-term continuity of that life-saving pediatric research.
The LAN will continue to monitor this bill and provide regular updates as it moves forward.
Childhood Cancer Families and Survivors Survey on COVID-19 Impact
If you're a caregiver to a child with cancer - either in active treatment or a survivor - or you’re a childhood cancer survivor yourself, Children’s Cancer Cause wants to hear from you about the impact of COVID-19 on your family, your medical care, and your finances.
Your input and insight will help ensure that we are working toward impactful solutions to the most pressing problems in our community during this challenging time. Please take this brief survey: childrenscancercause.org/covid-19-impact-survey
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