Virtual Patient Advocacy Townhall on Full Display at this Year’s Annual Meeting
Kellie Jones Weddle, PharmD, BCOP, FCCP, FHOPA
Clinical Professor
Purdue University
Indianapolis, IN
Being virtual for this year’s Annual Conference did not deter the Patient Outreach Committee from providing a collaborative dialogue across six patient advocacy organizations. HOPA had the honor of hosting: Cancer Care (Sarah Paul, LCSW, OSW-C- Director of Clinical Programs), Cancer Support Community (Elizabeth Franklin, PhD, MSW-President), The Leukemia and Lymphoma Society (Karen DeMairo, MHSA-Vice President—Education, Support & Integration), PAN Foundation (Amy Niles—Executive Vice President), Society for Immunotherapy of Cancer (Peter Intile, PhD—Associate Director of Science & Policy), and Stupid Cancer (Alison Silberman, MUP-CEO). During the hour-long town hall, Dr. Jennifer Powers, HOPA’s Patient Outreach Committee Chair, led the participants through a discussion across 3 different topics including: 1) Creating community through the cancer diagnosis, 2) Unique programs and resources for our patients, and 3) Financial and emotional resources to support our patients and families/caregivers. This session was recorded and representatives were available for a live Q&A session.
Creating Community through Cancer Diagnosis
The first topic was creating community through the cancer diagnosis. Stupid Cancer started the conversation with challenges that face the adolescent and young adult (AYA) population such as emotional, financial, and fertility and reproductive health, as well as unique programs that their organization provides. This is accomplished through social environments and events both online and in person. One of these programs is called “CancerCon” which is a weekend long event bringing in patients/caregivers for a fun-filled program for those in the AYA community. Stupid Cancer also recognizes health disparities in people of color, LatinX, and LBGTQ+ communities and provides space for these populations to come together.
The Leukemia and Lymphoma Society (LLS) carried on the conversation to discuss how their organization creates community and impacts healthcare in underserved and unrepresented patients. LLS spoke about their Myeloma Link which strives to increase access to treatment and education to the African American population. Additionally, LLS discussed their new programs reaching the LatinX community and incorporating materials and education in Spanish, similar to what has been accomplished within Myeloma Link.
Lastly, Cancer Support Community (CSC) discussed their focus on health equalities and anti-racist policies within their organization and their outreach to the Navajo nation. CSC is the first patient advocacy organization to help support the Navajo nation both socially and emotionally with support services in the Navajo’s first ever cancer care treatment facility.
Unique Patient Resources and Programs
The second component of the town hall addressed some of the unique resources and programs that the participating organizations offer. The Society for Immunotherapy of Cancer (SITC) started the conversation highlighting their commitment to offering education and resources to health care professionals, researchers, patients, and caregivers. One of their main efforts of education dissemination is through their annual meeting where stakeholders can gather to learn the latest information on immunotherapy and research. SITC offers online education through SITC ConnectED for all levels of learners with numerous online resources such as webinars, workshops, and written materials. SITC is also developing a patient survivor panel.
LLS then highlighted resources in their clinical trial support center. This center consists of clinical trial nurse navigators to increase patients’ opportunities for clinical trial participation by facilitating informed decision making and minimizing barriers for patients and their family members. Another unique service is their 1-on-1 nutrition consultation with a registered dietician who has experience with oncology patients. Other resources include programs for children with blood cancers on going back to school and ways to facilitate the learning experience during and after treatment.
Financial and Emotional Support
Financial and emotional support was the last topic discussed among the participants. Cancer Care offers an online, searchable database called Online Helping Hand which can connect individuals to financial resources and contact information both regionally and nationally for patients seeking help. Cancer Care also offers programs throughout the continuum of care for the patient from diagnosis through their entire journey. Additionally, they help with government assistance programs, pharmaceutical patient assistance programs, and copay relief groups to assist in alleviating financial burdens for patients. Counseling is a major focus of Cancer Care as they work with the patient from the time of diagnosis through their treatment journey. Counseling is conducted by oncology social workers specifically trained in this area to work with patients, families, and caregivers.
CSC offers a Cancer Support Helpline (available seven days a week) to help connect individuals with short term copay assistance, short term housing needs, treatment decision making support, financial navigation, stress relief and live/video chats. CSC can meet their patients wherever they are in their cancer journey.
Patient Access Network (PAN) Foundation also helps with navigating the process of finding financial assistance for patients. PAN Foundation, which is one of nine national patient assistance programs providing financial support for medications, helps with out-of-pocket expenses, copays, deductibles, and coinsurance costs and they now have additional services targeting other expenses patients are typically faced with when on therapy. They offer transportation assistance and have created a program entitled, Extra Help that offers financial assistance to Medicare beneficiaries.
FundFinder is a program developed by the PAN Foundation which is updated hourly as funds become available, alerting those who have signed up for notifications for coverage for specific disease states. This helps alleviate stress and time searching individual programs and databases by combining all information in one place. PAN foundation is active on social media to help disseminate this information in a quick manner to patients, caregivers, and providers. Their programs include live support groups, case management services, online support groups, and coping circle communities. Services are located in New York and New Jersey and other services online are available nationally.
The video recording of the Town Hall will be made available as an on-demand session until the end of November through the meeting platform for registrants of the 2021 HOPA Annual Meeting.
A Town Hall Summary Document is also available on the HOPA Patient Outreach page. Within this document there are direct links to these patient advocacy organization resources and materials. The Patient Outreach Committee encourages all HOPA members to check out this great resource to use in your day to day practice.