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Pharmacists and Patient Advocacy Organizations Working Together to Fill the Gaps in Care

George Valentine
Patient Advisory Panelist for HOPA
Retired Information Technology Consultant
Irving, TX

Chelsea Gustafson, PharmD, BCOP
Oncology Clinical Pharmacy Specialist
Community Health Network MD Anderson Cancer Center
Kokomo, IN

At this year’s annual conference, the Patient Outreach Committee hosted a session that brought together advocacy organization representatives, HOPA members, and Patient Advisory Panelists. The session allowed for small groups to meet and discuss the offerings of the represented organizations and learn how they could use the resources from these organizations to support patients. Patient Advocate Foundation (PAF), Stupid Cancer, Fight Colorectal Cancer (Fight CRC), and St. Baldrick’s Foundation were all represented at the session.

Participants learned about Fight CRC’s advocacy on the hill efforts and a multitude of videos available online for patients and caregivers to hear firsthand from other patients about their experiences in their cancer journey. They heard how Stupid Cancer offers a lifeline to adolescent and young adults (AYA) with cancer by connecting them with resources and peers and identifying the unique challenges of cancer in that stage of life. Representatives from St. Baldrick’s Foundation shared ways that pharmacists can get involved by volunteering, fundraising, and advocating for key legislation that impacts kids with cancer. Attendees also heard about some of the many things that the Patient Advocate Foundation (PAF) does to provide case management services and financial aid to people with not only cancer, but many chronic, life-threating, and debilitating illnesses. These were just some of the highlights of what was discussed.

George Valentine is a panelist on HOPA’s Patient Advisory Panel. He attended HOPA’s Annual Conference this year and participated in the advocacy session, Pharmacists and Patient Advocacy Organizations Working Together to Fill the Gaps in Care. He answered some questions and provided some of his takeaways from the session.

What services provided by the advocacy organizations do you think will be most impactful for pharmacists to share with individual patients?
While most advocacy organizations have a common goal to improve life for people living with cancer, their services and activities vary from one to the next. People living with cancer deal with a wide range of challenges including treatment options, choosing the right care facility and doctor, drug cost, work and or family responsibilities, access to information, finding support groups and finding a means to express their concerns. Every pharmacist must understand that two patients taking the same drug will not likely share the same set of challenges. Advocacy organizations can be a critical information resource to all pharmacists treating cancer patients.

What were you surprised to learn about during the session that you would like to share?
I was surprised to learn that there are so many different advocacy organizations of which I as a 20-year cancer survivor never knew existed. I left the session with mindset that access to needed healthcare with affordable treatment and drug cost is still a long way off and without the constant push by advocacy organizations we would continue to see needless adverse patient outcomes.

What initiatives did you learn about that you think will help improve care for cancer patients in the future?
I learned of efforts to influence/change our governmental policies that influence or direct every aspect of my healthcare as a cancer patient. As a retired senior on Medicare these initiatives would be most impactful to me as Medicare has cumbersome treatment guidelines and no existing limit/cap on out-of-pocket prescription drug cost.

How have advocacy organizations impacted your own personal cancer journey?
Several years ago, the doctor treating my Chronic Lymphocytic Leukemia (CLL) moved me from in-hospital treatment to an oral cancer drug taken daily. The drug improved every aspect of my treatment and life, but its cost was over $12,000 dollars a month with a high out-of-pocket burden. My pharmacists suggested I reach out to the Patient Access Network (PAN). The PAN Foundation provided me with financial assistance which covered 100% of my out-of-pocket for that specific drug. I do not feel I would be alive today were it not for the support of PAN.

PAN also has formal ongoing efforts advocating for improved drug access and affordability. PAN has submitted over fifteen policy recommendations, seventeen informational briefs, and thirteen policy letters to congress.

What is something new that you learned about the role of oncology pharmacists?
I live in a large city with options for hospitals and pharmacies. I was unaware of the expansive services and support provided by pharmacists who operate in remote/rural areas. I was also impressed by the amount of continuing education required and completed by oncology pharmacists.

What were your overall thoughts of attending HOPA AC 2022?
Having had experiences with a limited number of pharmacists, I was surprised by the diversity of attendees at the conference. I met and spoke with people from various cultures, locations, and educational backgrounds. I, like most cancer patients, see diversity as a positive option when choosing healthcare providers. I gained a deeper understanding of the role HOPA plays in bolstering the competencies of oncology pharmacists. I really enjoyed the poster board sessions that allowed me to see the planned improvements by prescription drug manufacturers and the availability of clinical trials. My heartfelt thanks to the team of people who put together an experience I will always remember.

After attending the conference, do you feel your role or thoughts on being a panelist have changed? If so, how?
I attended the conference with a feeling that advocacy could be a means for me to give back to all the people who have cared for me over the years. The conference energized me to take the next step to create an advocacy goal and plan of action for the next 12 months. I look forward to my continued participation as a panelist.

We thank George and all of our Patient Advisory Panelists for their participation in the advocacy session and HOPA AC22.