PLYMOUTH MEETING, Pa.,
Dec. 10, 2020 /PRNewswire/ -- Today,
the National Comprehensive Cancer Network®
(NCCN®) hosted an annual patient advocacy summit
featuring Senator Chris Van
Hollen (D-MD) and Congressman Buddy Carter (R-GA), which was streamed
online. Every year, the NCCN Policy department invites people from
across the oncology ecosystem to share their perspectives on
improving the quality and efficiency of cancer care so that
patients can live better lives. This year's virtual summit focused
on putting the "personal" into "personalized care" while exploring
how the needs of people with cancer can vary across the
lifespan.
"We work with patient advocacy organizations year-round to
ensure our policy team is advocating for policies that address the
most pressing issues for people with cancer and their caregivers,"
said Alyssa Schatz, MSW,
Senior Director of Policy and Advocacy for NCCN and a
participant in the roundtable discussion titled Identifying Policy
and Practice Solutions for Patients Across the Lifespan. "This
summit gives us a chance to learn from one another and speak
collectively to our audience of providers, payers, and
policymakers. A key takeaway from today's conversation is the
reminder to treat the person—not the demographic—while also
recognizing that people in some demographics may face additional
obstacles to quality cancer care."
"Cancer survivors are more than their age, gender, or disease,"
explained keynote speaker Jan S.
White, Cancer Survivor and Patient Advocate.
"Assumptions around age and gender often figure into care teams'
expectations for survivorship, but if you have not asked your
patients about their goals for how they want to live following
treatment, you are missing an important step. Their answers will
surprise you."
The idea of recognizing everyone's unique set of circumstances
was echoed by Danielle
Pardue, a panelist who spoke on behalf of caregivers:
"The best way to support a caregiver is to take the time to
understand the individual needs and strengths of each caregiver and
patient. No plan of care for any patient can be completely
successful without the support of one or more caregivers,
especially at home. Providers need to take both the patient's
preferences and the caregiver's abilities into account when
determining their treatment recommendations."
Pardue also pointed out: "Every problem does not necessarily
have a solution; caregivers should be encouraged to share what they
need so that solutions can be sought, but shouldn't be discouraged
from sharing when solutions are hard to come by. Sharing
experiences is in itself a therapeutic experience for overwhelmed
caregivers. There is great power and healing in venting because we
understand the world through the stories of others."
Speakers also looked at how members of various racial, ethnic,
or socioeconomic groups can face some common or recurring barriers
to care that must be addressed.
"We cannot separate social, racial, and economic inequality from
the adult cancer journey," said Darcie
Green, Executive Director of Latinas Contra Cancer. "The
clients we serve face predictable and preventable systemic barriers
to cancer care. Navigating cancer can be challenging enough without
also having to worry about how you will feed your family, pay rent,
absorb income loss, or overcome the obstacles that exist within the
healthcare system. The COVID-19 pandemic has only deepened health
injustice and the trauma of poverty in this country. This impact is
reflected in the experience of cancer patients in the population we
serve."
Many of the speakers focused particularly on how a person's age
at the time of diagnosis can result in different options or
approaches for treatment, for instance older patients, who are
more-likely to have additional, unrelated health concerns, or may
face implicit bias based on their age.
"As we refine our understanding of tumor biology and tailor
therapy to the molecular subtype of each tumor, we must remember
factors outside of the actual treatment that significantly affect
outcomes," observed Efrat Dotan,
MD, Fox Chase Cancer Center, Chair of the NCCN
Guidelines® Panel for Older Adult Oncology. "Especially
when treating older adults with cancer, evaluating all the domains
that affect their care—and addressing any deficiencies—will result
in truly personalized medicine and improved outcomes."
"Cancer is a disease of aging, yet older patients have not
shared in the benefits of many modern cancer treatments, and remain
woefully underrepresented in clinical trials," said Hyman Muss, MD, FASCO, University of North Carolina Lineberger
Comprehensive Cancer Center. "It is the obligation of all of us to
fix this in order to guarantee that our older cancer patients get
the care they need."
"We know how important it is to make sure clinical trials enroll
a broad representation of patients across age, race, and
ethnicity," agreed Maura Dickler,
MD, Lilly Oncology. "At Lilly, we are committed to reducing the
barriers that limit diversity in clinical trial enrollment,
including working to ensure our trial sites are closer to patients,
utilizing new forms of telehealth when appropriate, and broadening
eligibility criteria so we are not excluding patients who have
additional health conditions."
There are also unique concerns for cancer survivors who were
first diagnosed during childhood or adolescence. Panelists
discussed the confusion that can arise over what happens once
patients complete active treatment. That's where survivorship care
plans and clinical practice guidelines on preventing or managing
recurrence and side effects can play an important role.
"Effective transition of care in cancer survivors from
oncologists to primary care physicians can make a significant
difference in early detection of late effects. You can't find
something that you are not looking for," said Aarati Didwania, MD, MSCI, Robert H. Lurie
Comprehensive Cancer Center of Northwestern
University.
Speakers at the summit also touched on current events impacting
cancer care including the upcoming Supreme Court ruling on the
Affordable Care Act and the long- and short-term impact of the
COVID-19 pandemic on cancer care. The virtual discussions were
moderated by Clifford Goodman,
PhD, The Lewin Group, and also included Phylicia L. Woods, JD, MSW, from the Cancer
Support Community.
Representatives from the Cancer Hope Network, Patient
Empowerment Network, and Fight Colorectal Cancer presented
information about age-specific resources intended to increase
access to recommended screening, improve health literacy, and
provide peer-to-peer counseling services. Dottie Shead, MS, from NCCN's patient
information department discussed existing NCCN Guidelines for
Patients® across cancer types and supportive care
topics, including symptom management and age-related care for
adolescents and young adults. Shead also previewed the
soon-to-publish patient and caregiver guidelines focused
specifically on survivorship, including guidance on post-treatment
wellness recommendations, and monitoring and treating the late and
long-term effects that can arise from cancer care.
Visit NCCN.org/patients to learn more about free resources from
NCCN. Visit NCCN.org/policy for more on the ongoing work from the
NCCN Policy and Advocacy Department and save-the-date for future
summits and events. Join the conversation online using the hashtag
#NCCNPolicy.
About the National Comprehensive Cancer Network
The
National Comprehensive Cancer Network®
(NCCN®) is a not-for-profit alliance of
leading cancer centers devoted to patient care, research,
and education. NCCN is dedicated to improving and facilitating
quality, effective, efficient, and accessible cancer care so
patients can live better lives. The NCCN Clinical Practice
Guidelines in Oncology (NCCN Guidelines®)
provide transparent, evidence-based, expert consensus
recommendations for cancer treatment, prevention, and supportive
services; they are the recognized standard for clinical direction
and policy in cancer management and the most thorough and
frequently-updated clinical practice guidelines available in any
area of medicine. The NCCN Guidelines for
Patients® provide expert cancer treatment
information to inform and empower patients and caregivers, through
support from the NCCN Foundation®. NCCN also
advances continuing education, global initiatives,
policy, and research collaboration and
publication in oncology. Visit NCCN.org for more information
and follow NCCN on Facebook @NCCNorg, Instagram @NCCNorg, and
Twitter @NCCN.
Media Contact:
Rachel
Darwin
267-622-6624
darwin@nccn.org
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SOURCE National Comprehensive Cancer Network