CPAN’s Advocacy Year in Review: Highlights from 2023

As 2023 comes to an end, Rose Gerber, MS, Community Oncology Alliance’s (COA’s) director of patient advocacy and education, was joined by CPAN Chapter Advocacy Leaders Chelsea Klock, RN, OCN, Hematology-Oncology Associates of CNY, and Lisa Poiry, RN, OCN, Fort Wayne Medical Oncology and Hematology. This chat focused on CPAN’s 2023 issues and activities, as well as a retrospective of the work of several CPAN Chapters over the years since their founding.

COA’s Advocacy Outcomes and Hot Topics

Throughout 2023, COA members and CPAN advocates addressed the issues that affect cancer care and community oncology.

Congressional Testimony

During 2023, COA representatives testified before various congressional committees, including:

  • Senate Finance
  • Senate Commerce
  • House Energy and Commerce
  • House Oversight

Hill Day

In June, COA and CPAN held the first live Hill Day post-pandemic. In a single day, in over 200 meetings, 128 advocates from 31 states reached almost 200 legislators and policymakers. The meetings focused on the impact of pharmacy benefit managers (PBMs), the cost of care, and access to prompt care, as well as the importance of H.R. 4011, the TACT Act (Timely Access to Clinical Treatment Act) of 2023.

Hot Topics

COA submitted countless comment letters and request for information (RFI) responses engaging members and advocates in over 35 states. The 2023 hot topics included such issues as:

  • Cancer drug shortages
  • Inflation Reduction Act and the negotiation of drug prices
  • Reinterpretation by the Centers for Medicare and Medicaid Services (CMS) of drug delivery as a Stark law violation
  • 340B program abuses, “non-profit” hospitals, and hospital consolidation
  • Pharmacy Benefit Managers (PBMs)
  • Enhancing Oncology Model (EOM) and other potential Center for Medicare and Medicaid Innovation (CMMI) models on cancer care and Part B drugs
  • State-level policy engagement

2023 Key COA Events, News & Initiatives

The key events, news, and COA and CPAN initiatives include:

  • Year-long celebration of COA’s 20th anniversary themed “Innovating and Advocating for Cancer Care”
  • Hosting the 14th Annual Payer Exchange Summit
  • Announcement by the National Cancer Treatment Alliance (NCTA) of 43 oncology practices as inaugural members
  • Support for the Seniors’ Access to Critical Medications Act of 2023 (H.R. 5526)
  • Lawsuit filed against Health and Human Services (HHS) FAQ which limits cancer drug delivery to patients
  • Support of Senator Blackburn’s Stark Amendment on cancer drug delivery
  • Submitted comments to Congressional RFI on drug shortages
  • Congressional testimony about PBMs and the CMMI EOM
  • Supported a new bill to tie Medicare reimbursement to inflation
  • Submitted comments to CMS on prior authorization
  • Submitted letter suggesting reforms, including the “Gold Card” program for Medicare Advantage
  • Supported the Senate Health, Education, Labor, and Pensions (HELP) Committee Copays Act

To read all of COA’s updates, go to www.communityoncology.org/news-updates/press-releases and https://mycoa.communityoncology.org/news-updates/coa-newsletters.

CPAN’s Organizational Focus

CPAN is focused on educating patients and advocates about the value of community oncology cancer care. As advocates and staff learn about advocating for cancer care, they find themselves motivated to learn more, to advocate, and often have a sense that they have taken control of their cancer care.

CPAN Advocacy Highlights

The CPAN leadership team includes Rose Gerber, MS, and Medical Co-Chairs, Emily Touloukian, DO, Coastal Cancer Center, and Harsha Vyas, MD, FACP, Cancer Center of Middle Georgia. The team provides leadership in:

  • Providing advocacy, education, and engagement opportunities
  • Meeting and educating patients and survivors at their site of care
  • Holding 14 practice-based live events
    • Lunch & Learns
    • New chapter launches
    • Community events
  • Featuring advocate and leadership stories in media publications, websites, social media, and the COA Faces of Community Oncology Campaign
  • Advocates participated in local and national events
    • State of Community Oncology
    • COA Conference
    • COA Hill Day
    • Legislative Leadership meetings
    • Patient Advisory Boards
  • Leadership spoke at multiple national oncology and advocacy conferences
  • Supported multiple industry partners
  • Engaged with multiple external advocacy organizations

CPAN leadership provided advocacy education and clinical insight through various media outlets, which included contributions and presentations to:

  • Cancer Horizons’ article, Immunotherapy May Improve Lung Cancer Outcomes, Reduce Side Effects
  • Lynch Syndrome Hereditary Cancer Podcast
  • Utilization Management Roundtable
  • Joint meeting: U.S. Representative Buddy Carter, Fred Schnell, MD, COA and NCTA Chief Medical Officer, and members from several Georgia CPAN chapters
  • Women Leaders in Oncology presentation
  • Cornell University Forum on Community Oncology Cancer Care
  • Cancer Advocacy in Action Patient Forum

New Chapter Launches

Post-pandemic, CPAN is now able to host and attend in-person events. Most important is launching new chapters to meet patients where they are. New chapters allow COA member practices to extend CPAN benefits to their patients. Three new CPAN chapters were launched in 2023.

Hope Cancer Center of Nevada

As the first chapter launch post-pandemic and the first chapter in the West, the efforts of staff medical oncologist Dr. Raja Mehdi and Chapter Advocacy Co-Leaders Becky Collet and Sunshine Maracle resulted in one of the largest CPAN chapter launches. In addition to learning about the role of community oncology, patients shared stories about their cancer experiences.

Coastal Cancer Care

Chapter Advocacy Leader Kristina Blackburn, RN, and several members of the practice clinical staff, including Dr. Touloukian, participated in the launch providing additional education and information on subjects including oral medications and PBMs. In addition to learning about the role of community oncology, patients shared stories about their cancer experiences.

Clinton Memorial Hospital

CPAN also launched its first hospital-based chapter. Chapter Advocacy Leader Jill Reese, MS, APRN, OCN, who had been a chapter leader at another facility, worked in conjunction with Michael Shook, the cancer center director, and medical oncologist Dr. Hassan Issa to launch the chapter.

Educating Advocates Through Virtual Events

CPAN Advocacy Chats are monthly virtual educational conversations on advocacy and policy, bringing experts from COA, member practices, and prominent national cancer-related organizations to speak on various topics. This year’s advocacy chats covered:

  • What to Expect from Cancer Policy in the Year Ahead
  • The Role of Nutrition Before, During, and After Cancer
  • The Impact of Health Equity on Cancer Care
  • Clinical Trials in the Community Oncology Setting: Impact on Patient Care
  • Cancer Survivorship: The Impact on Mental Health
  • COA Policy and Advocacy Mid-Year Update
  • Health Insurance Open Enrollment: What Patients Need to Know
  • The Role of Pharmacists in Community Oncology
  • Knowledge as Power after a Pancreatic Cancer Diagnosis
  • CPAN’s Advocacy Year in Review

All advocacy chats are available on the COA website and the COA YouTube channel.

CPAN Advocates on Hill Day

COA and CPAN have been bringing advocates to Capitol Hill for over 12 years. After participating in her first Hill Day, one cancer survivor who is also a cancer care provider said:

“One action can create movement. Today was a pivotal day in my career. It was the very day I fell in love with lobbying for a great cause. Every bit of what we did was important. From the doctors and health care workers to the patients and caregivers, our voices were heard.”

CPAN Chapter Overview

Hematology-Oncology Associates of CNY CPAN Chapter (HOACNY)

Chapter Leader: Chelsea Klock, RN, OCN

Launched in September 2016, the CPAN HOACNY chapter has:

  • Participated in national CPAN Advocacy Events
    • COA National Conference Patient Advocacy track
    • COA Advocacy Capitol Hill Day
    • Community Oncology Virtual Advocacy Summits
    • CPAN Advocacy Leadership Workshop
  • Led practice-based and community events
    • Conducted more than 15 Sit in My Chair congressional events
    • National Cancer Survivors Day Event
  • Patients and survivors have shared their stories in the media and on CPAN’s website

2023 activities included:

  • Providing practice-based advocacy events, including education on biosimilars with speakers Jonas Congelli, RPH, chief strategy officer, and Nicholas Bouchard, PharmD, director of pharmacy services
  • Engaging in media advocacy through participation in COA’s Faces of Community Oncology Campaign and CPAN’s Advocacy Spotlight – News Bulletin
  • Supported COA’s corporate advocacy partners by participating in Genmab’s Science Day for Advocacy Leaders

Fort Wayne Medical Oncology and Hematology CPAN Chapter (FWMOH)

Chapter Leader: Lisa Poiry, RN, OCN

Launched in July 2018, the CPAN FWMOH chapter has:

  • Participated in national CPAN Advocacy Events
    • COA National Conference Patient Advocacy track
    • COA Capitol Hill Day
    • Community Oncology Virtual Advocacy Summits
    • CPAN Advocacy Leadership Workshop
    • COA Payer Exchange Summit
  • Led practice-based and community events
    • Sit in My Chair congressional event
    • Facebook Live events
    • Biden Cancer Community Summit
  • Hosted multiple practice-based patient education and advocacy events
    • Prior authorization
    • The Value of Community Oncology: Where You’re Treated Makes a Difference
    • Step therapy
    • Conducted employer advocacy events
    • 340B discussions
    • Sit in My Chair congressional event with Senator Todd Young

2023 events included:

  • Provided practice-based advocacy events, including education on biosimilars with speaker Jennifer Lilly, director of pharmacy services
  • Engaged in media advocacy through participation in COA’s Faces Of Community Oncology Campaign and CPAN’s Advocacy Spotlight – News Bulletin
  • Supported CPAN through social media

CPAN Advocacy Chats are regular virtual 30-minute educational conversations about cancer advocacy and policy with a guest speaker invited to discuss issues important to patients and advocates. Summaries of previous Advocacy Chats are available on the CPAN website.

  • Upcoming Advocacy Chat
    Pharmacy Benefit Managers: What Patients Need to Know

    May 15, 2024 12:00 pm

    The Community Oncology Alliance Patient Advocacy Network (CPAN) held a virtual Advocacy Chat on Wednesday, May 15, at 12 p.m. ET about the impact of pharmacy benefit managers (PBMs) on patient care and what patients need to know when interacting with PBMs.