Living Well With Myeloma: Financial and Other Resources for Myeloma Patients and Caregivers
WELCOME AND INTRODUCTION Robin Tuohy
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Thank you to our sponsors!
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Agenda Time (EST)
Presenter
Topic
700-705pm
Robin Tuohy Vice President Support Groups, International Myeloma Foundation
Open and Introduction
705-715pm
Beth Faiman, PhD, RN, MSN, APRN-BC, AOCN®, FAAN
Communication Strategies
715-720pm
Q&A
720-730pm
Rebecca Zeiter MSW, LSW
730-735pm
Q&A
735-745pm
Shontia Gamble, LSW
745-755pm
Q&A
755-800PM
Beth Faiman, PhD, RN, MSN, APRN-BC, AOCN®, FAAN
How a Social Worker Can Help You Introduction to Financial Navigation Closing Remarks 6
OVERVIEW OF COMMUNICATION STRATEGIES WITH YOUR TEAM Beth Faiman PhD, MSN, APRN-BC, AOCN, FAAN
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Most Valuable PARTNER
Teamwork
Primary Care Provider (PCP)
Advanced Practice Provider (Nurse Practitioner, Physician Asst., Pharmacist)
Family/Support Network
Financial Navigators Social Workers
You and Your Caregiver(s)
Allied Health (RN, nursing, medical assistants
Myeloma Specialist
Subspecialists 9
Expanding Treatment Options for Multiple Myeloma Antibody drug conjugate
Alkylator Alkylator conjugate Steroid Anthracycline Proteasome inhibitor (PI) Immunomodulator (IMiD) 1960 1958 Melphalan 1962 Prednisone
1970
Monoclonal antibody (mAb) HDAC inhibitor Nuclear export inhibitor CAR-T therapy
2015 Daratumumab 2015 Ixazomib 2015 Elotuzumab 2015 Panobinostat
1980
1990
2000
2010
2003 Bortezomib 1983 Autologous Stem Cell Transplantation 1986 High-Dose Dexamethasone
2006 Lenalidomide 2006 Thalidomide
2020
2021
2019 2020 2013 Daratumumab PomalidomideSelinexor SC 2018 2012 Carfilzomib Denosumab
2007 Doxorubicin
CAR-T therapy 2021 Melphalan 2020 Isatuximab Flufenamide
2020 Belantamab Mafadotin 10
Teamwork
Your Medical Data, HCP Experience Preferences Disease Characteristics
Administration, Chair Time
Efficacy of Regimen
Finances/ Insurance
Safety & Health Considerations
Social Status/ Support
B = bendamustine; C = cyclophosphamide; D = daratumumab; d = dexamethasone; E = elotuzumab; I = ixazomib; K = carfilzomib; P = pomalidomide; R = lenalidomide; SQ = subcutaneous; V = bortezomib Faiman B, et al. J Adv Pract Oncol. 2016;2016:7(suppl 1):17-29.
Shared Decision Making: Deciding on the Plays
Teamwork
This Photo by Unknown Author is licensed under CC BY-SA
Be the MVP of your healthcare team!
Get in the Game
Myeloma and Treatments Both Contribute to How You Feel
How You Feel 13
in the What happens if Symptoms Are Not Managed Properly? GetGame
This Photo by Unknown Author is licensed under CC BY-NCSA
This Photo by Unknown Author is licensed under CC BY-NC-SA
Discuss how you feel with your team ► Missed doses
► Keep a symptom diary; discuss with team
► Reduced treatment efficacy
► Many options but your team cannot help if
► Reduced quality of life
they don’t know
► Express your priorities – Fatigue is common concern but making
the right treatment decision is higher priority for most
Faiman, B. CJON. 2017, 21(5)suppl 3-6. Faiman, B. et al 2017. Patient Reported Symptoms, Concerns and Provider Intervention in Patients with Multiple Myeloma
Living Well: Adopt a Healthy Lifestyle for Patients,Caregivers
Bring Your “A” Game
► Managing stress ► Rest, relaxation, sleep hygiene ► Maintain a healthy weight, eat nutritiously ► Activity / exercise / prevent falls, injury ► Stop smoking ► Mental health / social engagement ► Sexual health / intimacy ► Complementary or alternative therapy ► Have a PCP for general check ups, preventative
care, health screenings, vaccinations
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It’s Time for….. Audience Q&A
Type and submit your questions here. Click the Q&A icon circled below if you have minimized the “Ask Question” window.
HOW CAN A SOCIAL WORKER HELP YOU? Rebecca Zeiter MSW, LSW
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How Can Social Workers Help? Calming fears and anxieties associated with cancer diagnosis and treatment Assessment of mental health needs and if necessary, referral to further mental health services (psychotherapy, psychiatry) psychologytoday.com Communicating with your healthcare team Talking with children about cancer Adjusting to changes, losses, and uncertainty Practical concerns such as transportation to appointments, insurance, financial assistance Advance Directives – Healthcare Power of Attorney and Living Will Working through distress
Distress Practical
Family
Emotional
Spiritual
Physical
Financial
Employment and Cancer
What If I Can’t Work?
Disability Benefits
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Qualifying for Benefits with Myeloma
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Ways to Apply for Federal Disability Benefits For SSDI
By Phone: 1-800-772-1213
Complete your application online: Go to ssa.gov/disabilityssi and click on “Apply for Disability” You will be screened then you will set up an appointment to complete the actual application
For SSI
By phone, in-person at local Social Security Office
Can apply online but ONLY if you also meet eligibility for SSDI
In-person at your local Social Security Office
Call first to make an appointment 25
It’s Time For…Audience Q&A
Type and submit your questions here. Click the Q&A icon circled below if you have minimized the “Ask Question” window.
INTRODUCTION TO FINANCIAL NAVIGATION Shontia Gamble LSW
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How Can Financial Navigators Help Link to resources: https://www.myeloma.org/onlineresources/drug-reimbursementinformation-assistance
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Insurance Resources SHIPs provide free, in-depth, unbiased, one-on-one health insurance counseling and assistance to Medicare beneficiaries, their families, and caregivers
Medicare.gov 1-800-MEDICARE Find and compare Medicare plans, apply for Medicare, get help with costs, Medicare resources
https://www.myeloma.org/governmentresources
Financial Resources Link to resources: https://www.myeloma.org/onlineresources/drug-reimbursementinformation-assistance
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Pharmaceutical Co-pay Assistance Programs
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What To Do If Financial Navigator is not available?
Visit https://www.myeloma.org/online-resources/drug-reimbursement-information-assistance for links to over 27 copay assistance programs!
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Lots of Virtual Support Groups around the Country!
https://www.myeloma.org/support-groups
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You are Not Alone International Myeloma Foundation Headquarters 12650 Riverside Drive, Suite 206 North Hollywood, CA 91607, USA myeloma.org InfoLine: We’re here to help. Give us a call. US & Canada 1-800-452-CURE (8273) Worldwide 1-818-487-7455 e-mail: InfoLine@myeloma.org
Questions? 34
Final Audience Q&A.. Thank you!
Type and submit your questions here. Click the Q&A icon circled below if you have minimized the “Ask Question” window.
Thank you to our sponsors!
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IMF Resources
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Government Resources
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Prescription Assistance RX Outreach
https://rxoutreach.org/ tel: 888-796-1234
Together RX Care
https://www.togetherrxacces.com/ tel: 800-444-4106
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Copay Assistance Pan Foundation
https://www.panfoundation.org/ tel: 866-312-7263
Patient Advocate
https://patientadvocate.org/ tel: 800-532-5274
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Additional Financial Resources
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