Mariah Forster Olson, an ACS CAN Ambassador Constituent Team Lead (ACT Lead), traveled to Washington, D.C. this week to share her story as a childhood cancer survivor and to advocate on behalf of other patients and survivors during the 2019 Childhood Cancer Action Days.
Making Today Better With Public Policies That Improve Patient Quality of Life
Improving quality of life for patients and their families is a top priority for ACS CAN’s advocacy agenda, and advancing policies that expand access to palliative care is an essential component of our work to support cancer patients around the country. From the moment of diagnosis, palliative care provides patients with serious or chronic illnesses a crucial layer of support through a team of specialized professionals, ultimately giving them more control in managing their disease and symptoms and leading to better health outcomes and reduced health care spending.
Today, ACS CAN volunteers will join the Patient Quality of Life Coalition (PQLC), an advocacy group of more than 40 organizations representing patients with serious illnesses and their families, for its sixth annual lobby day on Capitol Hill. Their ask to Congress is an important one: support the Palliative Care and Hospice Education and Training Act (PCHETA), bipartisan legislation that will increase federal research funding for palliative care, including pain and symptom management, and establish palliative care education and training programs for doctors, nurses and other health professionals. ACS CAN has led the charge for the past seven years about the need for investment in policies that will increase access to and awareness of palliative care services. PCHETA passed the House of Representatives last year with unanimous consent, and we’re determined to see this legislation, with so much potential to improve the lives of patients, pass through both chambers this year – which is why PQLC advocates are urging their lawmakers today to join the 217 current bipartisan House cosponsors already supporting the bill.
Federal legislation isn’t the only avenue for implementing policies intended to improve quality of life manage pain and other symptoms for patients and survivors; state policymakers have the opportunity to support policies that expand access to and awareness of palliative care services. ACS CAN has created model state legislation that establishes a Palliative Care Advisory Council comprised of state experts, and helps facilitate continuing awareness, education and training for health professionals in pain assessment, management and responsible prescribing and use of prescription monitoring programs. In just four years, 27* states have passed this model language or similar legislation. ACS CAN staff and volunteers were successful during this year’s state legislative sessions in advocating for quality of life policies:
- New legislation in Hawaii, originating from a recommendation from an ACS CAN palliative care working group, appropriates $250,000 to the Department of Health for each of the next two fiscal years to conduct two palliative care pilot programs.
- Kentucky passed a bill establishing a Palliative Care Interdisciplinary Advisory Council and a Palliative Care Consumer and Professional Information and Education Program to emphasize patient awareness and overall access to palliative care.
- Earlier this month, the Louisiana legislature passed a bill to implement a Palliative Care Advisory Council within the Department of Health to provide education on palliative care services available throughout the state.
- A new Minnesota law includes ACS CAN model language ensuring that established addiction councils and their recommendations do not have unintended consequences on cancer patients, survivors, hospice, palliative, or end-of life care. This language ensures that policy solutions to address the public health crisis of opioid misuse and abuse are balanced and won’t erect barriers to pain care for patients with legitimate pain needs.
Patients with serious illnesses and their families are depending on lawmakers to prioritize legislation that provides resources and education to improve their quality of life, no matter their age or stage of disease. Whether at the state level or in Congress, ACS CAN is working diligently to ensure patients, survivors, loved ones and caregivers are supported throughout their entire cancer journey with coordinated, patient-centered care.
*Louisiana bill is awaiting the governor’s signature