WELCOME TO THE LOS ANGELES PATIENT & FAMILY SEMINAR FRIDAY, AUGUST 14, 2026 HEATHER COOPER ORTNER PRESIDENT & CEO
THANK YOU TO OUR SPONSORS!
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SCAN THIS QR CODE FOR KEY IMF RESOURCES Helpful Links to: • Slides from Friday & Saturday Programming • Evaluations for Friday & Saturday Programming • SparkCures Search Engine specific for the California region • Ways to Give • IMF Website © 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
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AGENDA 1:00 – 1:15PM
Welcome
1:15 – 1:30PM
Hot Topics in Myeloma
1:30 – 2:15PM
Myeloma 101: The Big Picture Perspective
2:15 – 2:45PM
The Unseen Impact of Myeloma: Taking Care of Your Emotional Health
2:45 – 3:00PM
BREAK
3:00 – 3:40PM
Navigating Insurance & Medical Bills
3:40 – 3:55PM
Advocacy Update
3:55 – 4:25PM Simple
Myeloma 202: Immunotherapy Made
4:25 – 4:40PM
Understanding Clinical Trials
4:40 – 5:10 PM
Q&A with Guest Panel
5:10 – 5:15PM
Announcements & Evaluation Completion
5:15 – 6:15PM
Welcome Reception & Networking
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OUR MISSION Accelerating prevention and cure of myeloma and Improving quality of live for patients and families
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Shared Experiences Become Shared Strength! Support Groups empower patients & care partners with information, insight & hope The IMF provides educational support to a network of over 155 myeloma specific groups and over 200 Group Visits/Year
SGTeam@myeloma.or g © 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
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MEET THE SUPPORT GROUP TEAM!
Robin Tuohy
Jenn Wieworka
Vice President, Patient Support
• •
25+ Year Care Partner
•
Advocate
•
Director, Support Groups
Doctorate-Prepared Nurse Clinical Nurse Specialist
Becky Bosley Senior Director, Support Groups
Yara William
Associate Director, Support Groups
Katie Atkins
Cecilia Romero
Associate Project & Technology Director, Support Manager, Support Groups Groups
•
Oncology Nurse
•
•
Breast & Ovarian Cancer Survivor
Oncology Social Worker
•
•
Doctor of Public Health
Public Health Advocate
•
Community Engager
•
Resource Navigator
•
Technology Educator
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CALIFORNIA SUPPORT GROUPS Inland Empire
Duarte – City of Hope
Upland
Orange County
Pasadena/San Gabriel
Los Angeles
Rancho Mirage
Westlake
Napa/Sonoma
San Fernando Valley
Santa Cruz
San Diego
Sacramento
San Francisco Bay Area
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SHARED EXPERIENCE GROUPS MM Families For patients & care partners with young children Living Solo & Strong For patients without a care partner Veterans For those who served our country Las Voces de Mieloma For Spanish speakers
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
MM in the Middle For those diagnosed before age 50 Care Partners Only For myeloma care partners only Smolder Bolder For smoldering myeloma patients & care partners Living with High-Risk Multiple Myeloma For high-risk myeloma patients & care partners 10
MYELO
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INFOLINE 800-452-2873 (CURE) Promoting Knowledge, Empowerment, & Hope • Understanding lab results, terminology and disease state • Preparing for medical visits • Access to medical providers, specialty care (ASCT, CAR T)
Paul Hewitt
Missy Klepetar
• Access to specialty medications • Financial resources
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CLINICAL TRIAL MATCHING ENGINE
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EDUCATION – AWARENESS - MAM
11.8 K Mentions
60M Reach
346.5K Interactions
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EDUCATION – VIDEO
15
EDUCATION – WRITTEN
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IMF RESEARCH LEADERSHIP
Coordinated international leadership advancing prevention, better treatments, and a cure for myeloma © 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
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IMF ADVANCES GLOBAL MYELOMA RESEARCH The Scientific Advisory Board (SAB) provides strategic scientific guidance and identifies emerging research priorities The SAB helps shape and oversee major IMF research initiatives The International Myeloma Working Group (IMWG), a global network of nearly 400 myeloma researchers, collaborates to develop consensus guidelines, research standards, and landmark publications The Black Swan Research Initiative (BSRI) drives innovative research aimed at achieving a cure for myeloma Together, these programs foster global collaboration and accelerate scientific discovery
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
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THANK
YOU !
Let’s Get Social:
Myeloma.org
YOU ARE NOT ALONE
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HOT TOPICS IN MYELOMA Joseph Mikhael, MD, MEd, FRCPC, FACP, FASCO IMF Medical Advisor
MYELOMA 101: THE BIG PICTURE PERSPECTIVE WITH Q&A Joseph Mikhael, MD, MEd, FRCPC, FACP, FASCO, IMF Medical Advisor
MYELOMA 101: UNDERSTANDING THE BASICS
Understanding Myeloma Basics
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
How common is Myeloma in the US? Estimated New Cases in 2025
36,500
% of All New Cancer Cases
1.8%
Median Age At Diagnosis
69 years
How common is Myeloma?
Percent of New Cases by Age
Rate of New Cases per 100,000 Persons by Race/Ethnicity & Sex © 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
https://seer.cancer.gov/statfacts/html/mulmy.html dated 4.18.2025
What Causes Myeloma? How/Why Did I Get This? Environmental Factors: • Exposure to some chemicals • Radiation exposure Examples: Agent Orange Burn pits Pesticides, Herbicides Firefighter/First Responder exposures
Individual Factors: • Age • Family History of related disorders • Personal History of MGUS or SMM • Obesity
VA Study Documents Health Risks for Burn Pit Exposures Leukemia and Multiple Myeloma Set to Be Added to List of Conditions Linked to Burn Pits © 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
In most cases, the honest truth is ….. WE DON’T KNOW
The Connection Between Bone Marrow & Myeloma Hematopoietic stem cell
Red Blood Cells
White Blood cell
Platelets
Carry Oxygen
Fight Infection
Prevent Bleeding
Photo Credit
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
This Photo by Unknown Author is licensed under CC BY
Graphic Credit: Teresa Miceli
Understanding (Mono)clonal Plasma Cells
Heavy Chain = M-Spike 65% IgG – most common 20% IgA – associated with AL Amyloid 5% to 10% light chain-only (kappa, lambda) Less common: IgD, IgE, IgM eGFR = estimated glomerular filtration rate; M-spike = monoclonal spike; Ig = Immunoglobulin
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
Image Credit: IMF Patient Handbook
Heavy Chain: G, A, M, D, E
• • • • • •
AL-Amyloid POEMS Light or Heavy Chain Deposition Disease MGCS = Clinical MGRS = Renal MGNS = Neuro
Is Myeloma the Only Protein Disorder?
(Monoclonal Gammopathy of Undetermined Significance)
SMM1-5,8
(Smoldering Multiple Myeloma)
Active Multiple Myeloma6-8
Clonal plasma cells in bone marrow
<10%
10%-60%
>10%
Presence of Myeloma Defining Events
None
None
Yes
Likelihood of progression
~1% per year
~10% per year
Not Applicable
Treatment
No; observation
Yes for high risk*; No for others
Yes
Condition
MGUS1-4
* In clinical trial © 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
MGCS = clinical significance; MGRS = Renal significance; MGNS = Neuro significance
Multiple Myeloma and Myeloma Defining
Clonal Bone Marrow ≥ 10% Or Bony/Extramedullary Events Plasmacytoma AND any one or more Myeloma Defining Events (MDE) SLiM CRAB
C alcium elevation R enal complications A nemia B one disease
S Clonal BMPC ≥ 60% Li FLC ratio >100
M
>1 focal lesion* by MRI BMPC = Bone marrow plasma cells FLC = serum free light chain * >5 mm
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
Rajkumar SV, et al. Lancet Oncology. 2014; 15:e538-e548. Kyle RA, et al. Leukemia. 2010; 24(6):1121–1127.
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Testing For Myeloma: Blood & Urine Test Name
What it means
CBC + differential Complete metabolic panel
Hemoglobin, WBC, Platelets Creatinine, Calcium, Albumin, Liver function
Beta-2 Microglobulin (B2M) Lactate Dehydrogenase (LDH)
Part of staging and risk stratification
Serum Immunofixation and Protein electrophoresis (SPEP+IFE) Immunoglobulins (G, A, M, D, E) Free light chain assay with kappa/lambda ratio
Measures the level of normal and clonal protein Identifies the type of clonal protein
Urine immunofixation & protein electrophoresis (UPEP+IFE)
Measures the level of normal and clonal protein Identifies the type of clonal protein
Rajkumar et al. LancetMyeloma Oncol. 2014;15:e538-3548. Ghobrial IM, et IMF al. Blood. 2014;124:3380-3388; mSMART.org; NCCN.org © 2026, SV, International Foundation. All rights reserved. Confidential
C R A B
This Photo by Unknown Author is licensed under CC BY-SA-NC
S Li M
CBC= Complete Blood Count; WBC = White Blood Cell
Testing For Myeloma: Imaging Imaging: – Skeletal survey: Series of X-rays; less sensitive than other techniques
– Whole body low dose (CTWB-LD CT ) – Positron Emission Tomography (PET/CT) – Magnetic Resonance Imaging (MRI)
S L i M
Healthy bone versus myeloma bone disease
C R A B
This Photo by Unknown Author is licensed under CC BY-NC-ND
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
Rajkumar SV, et al. Lancet Oncol. 2014;15:e538-3548. Ghobrial IM, et al. Blood. 2014;124:3380-3388; mSMART.org; NCCN.org
Testing For Myeloma: Bone Marrow This Photo by Unknown Author is licensed under CC BY-SA
Bone marrow genetics • Cytogenetics • Fluorescence in situ hybridization (FISH) • Next generation sequencing (NGS) High Risk FISH Results* Deletions
Translocations
Gain
1p17p- (p53del)
t(4;14) t(14;16) t(14;20)
1q+
Image Credit: IMF Patient Handbook
Bone marrow biopsy & aspirate • Bone marrow plasma cells (%) • Congo Red staining if concern for AL-Amyloid Rajkumar SV, et al. Lancet Oncol. 2014;15:e538-3548. IM,IMF et al. Blood. 2014;124:3380-3388; mSMART.org; NCCN.org © 2026, International Myeloma Foundation. All rightsGhobrial reserved. Confidential
*15-20% of people with NDMM
IMS/IMWG consensus on high-risk myeloma definition Del17p
in more than 20% of sorted plasma cells
TP53 mut
(no threshold VAF)
Biallelic Del(1p32)
t(4;14) or t(14;16) or t(14;20) 2 among
β2M ≥5.5mg/L
Gain/amp 1q Monoallelic del(1p32)
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
Avet-Loiseau et al. J Clin Oncol 2025
(if creat <1.2mg/dL)
What is the Myeloma Treatment Landscape? L O T # 1
Initial Therapy (a.k.a. Frontline, Induction) Quad Therapy (ex. CD38+ MoAb + VRd) HD-Melphalan + Stem Cell Transplant (ASCT)
O r
Consolidation Therapy
Maintenance LOT #2
Treatment for Relapse
LOT #3
Treatment for Relapse
LOT #4
Treatment for Relapse
LOT #5
Treatment for Relapse
LOT #6
Treatment for Relapse
© 2026, International Myeloma Foundation. AllASCT rights =reserved. IMF Stem Confidential Autologous Cell Transplant; MoAb=monoclonal antibody; VRd=Velcade, Revlimid, dexamethasone
Supportive Care and Living Well
Drug Class Overview Class
Drug Name
Abbreviation
IMiD immunomodulatory drug
Thalomid (thalidomide)
T or Thal
Revlimid (lenalidomide)
R, Rev, Len
Pomalyst (pomalidomide)
P or Pom
Velcade (bortezomib)
V or Vel or B
SC/SQ or IV
Kyprolis (carfilzomib)
C or K or Car
IV
Ninlaro (ixazomib)
N or I
Oral
Cytoxan (cyclophosphamide)
C, CTX
Alkeran or Evomela (melphalan)
M or Mel
Oral IV
Decadron (dexamethasone)
Dex or D or d
Prednisone
P or Pred
Monoclonal Antibodies
Darzalex (daratumumab) Sarclisa (isatuximab) Empliciti (elotuzumab)
Dara Isa Elo
IV or SQ IV IV
XPO1 Inhibitors
Xpovio (selinexor)
X or Sel
Oral
Proteasome inhibitor
Chemotherapy
Steroids
© 2026, Myeloma Foundation.Under All rights reserved. IMF= Confidential SCInternational or SQ = Subcutaneous, the skin; IV Intravenous
Administration Oral (PO)
Oral IV
Drug Class Overview Class
Drug Name
Abbreviation
Administration
Peptide Drug Conjugate*
Pepaxto (Melphalan Flufenamide)
Melflufen
IV
BCMA Targeted Antibody Drug Conjugate (ADC)
Blenrep (belantamab mafodotinblmf)
Bela, Belamaf, or B
IV
Abecma (idecabtagene vicleucel)
Ide-cel
CAR T Cell therapy
Bispecific Antibodies
Pipeline
Carvykti (ciltacabtagene vicleucel) Tecvayli (teclistimab) Talvey (Talquetamab) Elrexfio (Elranatamab) Lynozyfic (Linvoseltamab
IV Cilta-cel Tec Talq Elra Linvo
SC/IV
Cevostamab, Iberdomide, Mezigdomide, Anito-cel, Venetoclax AZD0120, Etentamig, KLN-1010, Trispecifics …………………………… TO COME!
MORE
* This agents is currently off the market in the US but available through special programs SC or SQ = Subcutaneous, Under the skin; IV = Intravenous © 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
Flow MRD negative*
sCR Response
Myeloma Cells & Protein
Measuring Disease Response: IMWG Response Criteria
Molecular CR CR
VGPR PR MR SD PD
Negative by next generation flow (NGF) (minimum sensitivity 1 in 10-5 nucleated cells or higher)*
mCR AND normal Free Light Chain ratio, Bone Marrow negative by flow, 2 measures CR AND negative PCR Complete Response: Negative immunofixation (IFE); no more than 5% plasma cells in BM; 2 measures Very Good Partial Response: 90% reduction in myeloma protein Partial Response: at least 50% reduction in myeloma protein Minimal Response Stable Disease: Not meeting above criteria Progressive Disease: At least 25% increase in identified myeloma protein from lowest level
MRD = Minimal Residual Disease sCR = Stringent Complete Response; BM = Bone Marrow Kumar, S., Paiva, B., Anderson, K. C., Durie, B., Landgren, O., Moreau, P., ... & Dimopoulos, M. (2016). International Myeloma Working Group consensus International Myeloma Foundation. All rights reserved. IMF Confidential criteria© for2026, response and minimal residual disease assessment in multiple myeloma. The lancet oncology, 17(8), e328-e346.
When Do I Need A New Treatment? • Not every relapse requires immediate therapy • Each case is different
Asymptomatic biochemical relapse on 2 consecutive assessments
Asymptomatic high-risk disease or rapid doubling time or extensive marrow involvement Consider Treatment Patient-/Disease-Specific Monitor Carefully
Consider Observation Monitor Carefully
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
Kumar et al. NCCN Guidelines. Multiple myeloma. V4.2018.
Symptomatic or extramedullary disease
Initiate Treatment
Targets on the Myeloma Cell Surface and Therapeutic AntibodiesBi-Specific Antibodies Bi-Specific Antibodies Talvey (Talquetamab) CAR-T
CAR-T
GPRC5D
FcRH5
SLAMF7
Monoclonal Antibodies Daratumumab and Darzalex Faspro Sarclisa (Isatuximab) TAK-079 MOR202
Antibody Drug Empliciti (Elotuzumab) Bi-Specific Antibodies
BCMA © 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
CD38
Immune Therapies Abecma (Ide-cel CAR-T) Carvykti (Cilta-cel CAR-T) Tecvayli (Teclistamab) Elrexfio (Elranatamab) Lynozyfic (Linvoseltamab) Other CAR-Ts Other Bi-Specific Antibodies
Antibody Drug Conjugates
How it works: An antibody directed at a target (BCMA) combined with a cytotoxic agent (chemotherapy) ADC = Antibody-Drug Conjugate BCMA = B-Cell Maturation Antigen ADCP/ADCC = Antibody-Dependent Cellular Cytotoxicity & Phagocytosis © 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
Image Credit: https://creativecommons.org/licenses/by-nc/3.0/
Blenrep (belantamab mafodotin) combinations approved by UK MHRA in relapsed/refractory multiple myeloma. April 2025
Bispecific Antibodies: Mechanism of Action • Incorporates 2 antibody fragments to target and bind both tumor cells and T cells • Brings target-expressing MM cells and T cells into close proximity, enabling T cells to induce tumor-cell death
Targets of Bispecific Molecule Vary Tumor Cell Agent T-Cell Target Target
Teclistamab Elranatamab Linvoseltamab
BCMA
CD3
Talquetamab
GPRC5D
CD3
Cevostamab
FcRH5
CD3
“Off the Shelf” Advantage
ADC = Antibody-Drug Conjugate; BCMA = B-Cell Maturation Antigen; CD3 = Cluster of Differentiation 3; FcRH5 = Fc receptor-homolog 5; GPRC5D = G-protein coupled receptor family C group 5 member D © 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
• No manufacturing process, unlike CAR T-cell therapy (but like ADC/belantamab therapy) • Thus, no delay between decision to treat and administration of drug
Image Source: Shah N, et al. Leukemia. 2020;34:985–1005. Creative Commons License: CC BY 4.0. Barilà G, et al. Pharmaceuticals (Basel). 2021;14(1):40.
The Process of CAR T Cell Therapy 1 CAR T therapy recommended. Insurance approved and ready to move forward.
2a
Apheresis to collect T Cells
T Cells
ll e C n T usio f In
3
2b
Bridging therapy, if needed; Lymphodepleting therapy when CAR T cells are ready
CAR Chimeric Antigen Receptor T Cell; LOT =reserved. Lines ofIMF Therapy © T= 2026, International Myeloma Foundation. All rights Confidential
Hucks G, Rheingold SR. Blood Cancer J. 2019;doi:10.1038/s41408-018-0164-6.
4
Close monitoring and Management of side effects
5 HOME!
What about Cure in Myeloma?
Defining “Cure” has many considerations:
We have historically called myeloma “incurable” as such a small fraction of patients remained in long term remission
Survival continues to improve in MM with an average over 10 years now!
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
https://seer.cancer.gov/statfacts/html/mulmy.html dated
Elimination of disease, down to Minimal Residual Disease Negative (MRD-) Prolonged deep response Off Therapy A recent DRAFT definition is being considered:
The Evolution of Myeloma Therapy
Now
VD Rev/Dex CyBorD VTD VRD KRD D-VMP DRD
ASCT Tandem ASCT (?)
Front line treatment
Induction
New
D-VRD Isa-VRD D-KRD Isa-VRD
Consolidation
“More” induction?
Nothing Thalidomide? Bortezomib Ixazomib Lenalidomide Combinations
Idecabtagene autoleucel Ciltacabtagene autoleucel Teclistamab, Talquetamab Elranatamab, Linvoseltamab
Maintenance
Relapsed
Post Consolidation
Rescue
Daratumumab? Carfilzomib? Lenalidomide + PI
ASCT, autologous stem cell transplant; CAR, chimeric antigen receptor; Cy, cyclophosphamide; d- daratumumab; D/dex, dexamethasone; isa, isatuximab; K, carfilzomib; M, melphalan; PD-L1, programmed death ligand-1; PI, proteasome inhibitor; Rev, lenalidomide; V, bortezomib. Speaker’s own opinions.
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
Bortezomib Panobinostat Lenalidomide Daratumumab Carfilzomib Ixazomib Pomalidomide Elotuzumab Selinexor Isatuximab Belantamab mafodotin* Melphalan flufenamide*
CAR T Cell Therapy Bispecific/Tri-specific Antibodies Cell Modifying Agents Venetoclax PD/PDL-1 Inhibition? Small Molecules
* These agents are currently off the market but available through special programs
Anito-cel Cevostomab Iberdomide, Mezigdomide Sonrotoclax KLN-1010 AZD0120
Second/Expert Opinion • You have the right to get a second opinion. Insurance providers may require second opinions. • A second opinion can help you: – Confirm your diagnosis – Give you more information about options – Talk to other experts – Introduce you to clinical trials – Help you learn which health care team you’d like to work with, and which facility
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
Where can I learn more? Myeloma.org
Thank you! © 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
https://seer.cancer.gov/statfacts/html/mulmy.html; dated 6.15.2024
THE UNSEEN IMPACT OF MYELOMA: TAKING CARE OF YOUR EMOTIONAL HEALTH Yara William, DrPH, MHA IMF Associate Director, Support Groups
THE UNSEEN IMPACT OF MYELOMA: TAKING CARE OF YOUR EMOTIONAL HEALTH IMF Support Group Directors
. .0.2 . .0.2
Disclaimer
The International Myeloma Foundation Support Group Team presents this information to support learning and conversations with your healthcare team. This presentation is for informational purposes only and is not intended to provide medical advice or replace guidance from your medical providers.
Common Emotional Responses The Spectrum of Emotions Coping with your Emotions Grounding Exercises
AGENDA
When & Where to Seek Help Wellness Tips & Resources for
Support
Questions & Discussion
53
COMMON EMOTIONAL RESPONSES
Myeloma is often seen through the lens of physical symptoms, treatments, and survival rates.
Beneath the surface of this medical battle lies a profound emotional journey that affects not only the person diagnosed but also their loved ones.
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
55
Initial Feelings Getting a diagnosis of cancer can feel like getting the wind knocked out of you.
All feelings are normal! https://opentextbc.ca/introductiontopsychology/chapter/10-1-the-experience-of-emotion/
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
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Shock & Disbelief Some patients describe a feeling of numbness or surrealism after a cancer diagnosis; unable to fully grasp the weight of the news. •
Confusion
•
Disconnection
•
Denial
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
57
Anger It is completely normal to experience anger towards: •
Doctors
•
Healthcare team
•
Yourself
•
God
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
58
Fear & Worry Patients describe many fears after a myeloma diagnosis, including: •
Fear of death and dying
•
Fear of pain or treatment
•
Fear of rejection/loneliness
•
Fear about the future
•
Practical worries (finances, housing, career, etc.)
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
59
Grieving Shifts in Identity •
Side effects like fatigue, hair loss, nausea, and cognitive changes can strip away one’s sense of normalcy and identity.
•
Some people feel isolated as they withdraw from social activities, work, or relationships due to physical limitations or emotional distress.
•
The loss of independence and routine can be demoralizing and defeating.
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
60
Relationship Challenges •
Cancer can significantly impact relationships with partners, family, friends, and coworkers.
•
Some people may not know how to respond or offer support, leading to awkwardness, discomfort, or distance.
•
Care partners can also experience emotional exhaustion, guilt, and helplessness as they witness their loved one's suffering.
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
61
Anxiety Symptoms of anxiety include: • ruminating about a specific fear • sleep disturbance • feeling restless or edgy • irritability • being easily fatigued or overstimulated • difficulty concentrating or forgetfulness
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
62
Depression Symptoms of depression include:
Sleep disturbance
Loss of interest/pleasure in activities that used to feel exciting (anhedonia)
•
Feelings of guilt or worthlessness
•
Psychomotor disturbance
Changes in energy or excessive • Suicidal thoughts fatigue • Depressed mood • Appetite/weight changes •
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
Prevalence of Depression •
In the US, 23.1% of the general population meet criteria for a diagnosis of a mental health disorder.
•
Over 56% of patients living with blood cancers experience anxiety and depression
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
Depression is Serious Please take these symptoms seriously AND seek help as you need it! PLEASE call 988 if you ever have thoughts that yo u may want to hurt yourself.
There is a professional available 24/7 to talk with you! © 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
65
THE SPECTRUM OF EMOTIONS
Finding Value in the Challenge •
This is never about suggesting the illness itself is “good” or that someone should suffer.
•
Rather, it’s about recognizing that within extremely difficult or unwanted experiences, people sometimes discover forms of meaning, strength, connection, or clarity.
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
67
Emotional and Spiritual Growth Research in psycho-oncology shows that post-traumatic growth is surprisingly common. People sometimes describe: •
A greater appreciation for life’s small moments
•
New or deepened spiritual beliefs
•
A sense of inner strength they didn’t know they had
•
Increased empathy or patience
Suffering forces confrontation with vulnerability and uncertainty, and some individuals emerge with a transformed worldview.
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68
Healing Versus A Cure •
We may not yet have a cure for myeloma, and the reality is our physical bodies are never perfect, but we can experience emotional or spiritual healing in the midst of this journey.
•
Consider for yourself what it would mean to engage in “healing.”
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
69
Hope & Empowerment Cancer strips away control, but in that loss, people often find a different kind of agency: •
Choosing how to spend meaningful time
•
Choosing how to speak about their experience
•
Choosing how they meet uncertainty emotionally and spiritually
The struggle becomes a teacher of resilience and presence.
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
70
Purpose Through Helping Others A powerful source of meaning comes from turning personal suffering into support for others: •
Advocating
•
Volunteering
•
Leading a support group
•
Sharing one’s story
•
Helping someone newly diagnosed
The idea of “I can use what I’ve been through” gives suffering a sense of direction. © 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
71
COPING WITH YOUR EMOTIONS
Coping with Heavy Emotions • Awareness • Identify • Accept • Recognize • Stay Curious • Let go
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73
Coping with Heavy Emotions Don’t feel that you have to be “strong.” If you feel tired, lonely, anxious, depressed, angry, etc., acknowledge your feelings and talk about them. If all you want to do is cry, then go ahead. Crying is a natural catharsis.
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
74
Grief & Gratitude “The work of the mature person is to carry grief in one hand and gratitude in the other and to be stretched large by them. How much sorrow can I hold? That’s how much gratitude I can give. If I carry only grief, I’ll bend toward cynicism and despair. If I have only gratitude, I’ll become saccharine and won’t develop much compassion for other people’s suffering. Grief keeps the heart fluid and soft, which helps make compassion possible.” -Francis Ward Weller
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GROUNDING TECHNIQUES
Emotional Grounding Techniques 5-4-3-2-1 Grounding Exercise The “Pretzel” or other bilateral stimulation exercises Mindful Walking 4 Square breathing Categories (i.e. Colors, college football teams, etc.) Aromatherapy Hold a piece of ice Eat a small bite of food with intention and mindfulness © 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
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WHEN & WHERE TO SEEK HELP
Practical Help Think about what you need. Lots of people will want to help but don’t know how. •
Practical needs
•
Financial help
•
Emotional support
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
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When to Seek Professional Help Your mental health is as important as your physical health! Tell your healthcare team or another medical professional if you need support. Ask if your hematology/oncology clinic employs a clinical social worker or counselor. Emotional support and therapy services are available at many clinics.
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
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WELLNESS TIPS & RESOURCES FOR SUPPORT
Support Groups Provide a Sense of Belonging • • • • • • • • • •
Included Welcomed Connected Accepted Involved Supported Heard Valued Seen Hopeful
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
Wellness Tips Talk to friends and family, and others you trust Ask for help and be specific about what you need Join a support group Get education and information only from reliable/reputable sources Take time for yourself Spend time with supportive friends Celebrate every victory! © 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
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Resources Talk with your doctor to determine what plan of action works best for you. Medications could potentially be part of a treatment plan that you and your doctor work on together. If you think therapy/counseling could be beneficial, ask for a referral or check out websites/platforms such as: •
Headway
•
Better Help
•
Talkspace
•
CaringBridge
•
Psychology Today
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
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Follow up Questions or Discussion? Please feel free to reach out to us! IMF Support Group Team: SGTeam@myeloma.org
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
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SCAN THIS QR CODE FOR KEY IMF RESOURCES Helpful Links to: • Slides from Friday & Saturday Programming • Evaluations for Friday & Saturday Programming • SparkCures Search Engine specific for the California region • Ways to Give • IMF Website © 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
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NAVIGATING INSURANCE & MEDICAL BILLS Susan Yoon, Esq. Triage Cancer
Navigating Insurance & Medical Bills Susan Yoon, Esq. Staff Attorney, Triage Cancer This presentation provides general information on the topics presented. The authors and presenters are not engaged in rendering any legal, medical, or professional services by its presentation or distribution. Although this content was reviewed by a professional, it should not be used as a substitute for professional services. No part of this presentation may be reproduced, distributed, or transmitted in any form or by any means, without the prior written permission of the author, except properly attributed, noncommercial uses permitted by copyright law. For permission requests, contact the authors at info@triagecancer.org © 2026 Triage Cancer®
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About Triage Cancer
Triage Cancer is a national, nonprofit organization that provides free education on the legal and practical issues that may impact individuals diagnosed with cancer and their caregivers. © 2026 Triage Cancer®
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Triage Cancer’s Free Resources
• TriageCancer.org • Educational Events • •
Triage Cancer Conferences Live & Recorded Webinars
• CancerFinances.org • Quick Guides & Checklists • Animated Videos • State Resources & Chart of State Laws • Legal & Financial Navigation Program © 2026 Triage Cancer®
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Don’t Understand Health Insurance? You Are Not Alone.
Source: 2017 PolicyGenius Health Literacy Survey © 2026 Triage Cancer®
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Terms: Costs Cost to Have Health Insurance • Premium: each month (fixed $ amount)
Costs When You Use Health Insurance • Deductible: each year (fixed $ amount) • Co-Payment: each time you get care (fixed $ amount) • Co-Insurance / Cost-Share: each time you get care (%) • Out-of-Pocket Maximum (fixed $ amount): deductible + co-payments + co-insurance
© 2026 Triage Cancer®
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Meet Michael Michael’s Marketplace Plan:
Deductible = $2,000
Co-insurance = 70/30 plan OOP Max = $8,000 If Michael has a $72,000 hospital bill, what does he pay? 1. His deductible of $2,000 $72,000-$2,000 = $70,000 left 2. His co-insurance amount of 30% 30% of $70,000 = $21,000 But OOP max is $8,000. So, he would pay the $2,000 deductible + $6,000 of the $21,000 co-insurance amount, for a total of $8,000. © 2026 Triage Cancer®
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Out-of-Pocket Maximums Details . . . There may be a separate out-of-pocket maximum for out-of-network services Individual vs. Family Plans • e.g., Individual $5,000 and Family $10,000 Marketplace Plans • Out-of-pocket max = deductible + co-payments + co-insurance (medical care & drugs) Some Employer Plans • Doesn’t include deductibles • Out-of-pocket max = co-payments + co-insurance • Doesn’t include deductibles or co-payments • Out-of-pocket max = co-insurance • Doesn’t include prescription drugs • Separate out-of-pocket max for prescription drugs = co-payments + co-insurance © 2026 Triage Cancer®
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Where We Get Health Insurance All Know Your Health Insurance Options V
© 2026 Triage Cancer®
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Health Insurance Resources TriageCancer.org/HealthInsurance • Quick Guide to Health Insurance Options • Quick Guide to Health Insurance Basics • Quick Guide to Health Insurance Marketplaces • CancerFinances.org Health Insurance • Triage Cancer Blog – Health Insurance • Recorded Webinar: Understanding Medicare • Recorded Webinar: How to Choose & Use Your Health Insurance …and many more! © 2026 Triage Cancer®
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Comparing Plan Options Marketplace Plan 1
Employer Plan 1
Marketplace Plan 2
Employer Plan 2
Marketplace Plan
Employer Plan © 2026 Triage Cancer®
Medicare Advantage Plan 1
Medicare Advantage Plan 2 100
Total Annual Cost
© 2026 Triage Cancer®
Bronze: Monthly Premium
Deductible
Out-of-pocket Maximum
$200
$6,000
$8,000
Silver: Monthly Premium
Deductible
Out-of-pocket Maximum
$275
$2,500
$6,000
Platinum: Monthly Premium
Deductible
Out-of-pocket Maximum
$400
$0
$2,000 101
Do the Math! Total costs for year = (monthly premium x 12) + OOP max Bronze: Monthly Premium
Deductible
Out-of-pocket Maximum
$200
$6,000
$8,000
$200 x 12 = $2,400 + $8,000 = $10,400 Silver: Monthly Premium
Deductible
Out-of-pocket Maximum
$275
$2,500
$6,000
$275 x 12 = $3,300 + $6,000 = $9,300 Platinum: Monthly Premium
Deductible
Out-of-pocket Maximum
$400
$0
$2,000
$400 x 12 = $4,800 + $2,000 = $6,800 © 2026 Triage Cancer®
Note: for in-network providers only 102
Key Considerations • Cost • Premiums, co-payments, deductibles, co-insurance, out-ofpocket maximums
• Network of providers and facilities • Check if your providers and facilities (hospitals, labs, imaging centers, etc.) are covered
• Prescription drug coverage • Which drugs are covered (i.e., formulary)? • Is there a separate out-of-pocket maximum for drugs? © 2026 Triage Cancer®
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Picking a Health Insurance Plan TriageCancer.org/video-pickingaplan
TriageCancer.org/Worksheet-HealthInsurance © 2026 Triage Cancer®
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TriageCancer.org/Worksheet-Medicare
© 2026 Triage Cancer®
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When to Enroll?
• Employer plans: varies (often in the Fall) • Medicaid: accepted year round • Medicare: Oct. 15 – Dec. 7* • 2027 Marketplace: Nov. 1 – Jan. 15* *Plans are for a calendar year
© 2026 Triage Cancer®
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Where Are There Opportunities to Lower Costs? Insura nce Compa ny Government: Medicare, Medicaid, Military, State & Local Programs, etc.
Employer
© 2026 Triage Cancer®
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Help With COBRA Costs
• Health Insurance Premium Payment Program (HIPP) • Medicaid-eligible recipients with group health insurance • Medicaid pays premium for group health insurance (e.g., COBRA) • Don’t have to change providers; employer coverage may be better • 31 states have this program, including: CA, GA, IA, IL, MA, PA, RI, TX, VA TriageCancer.org/StateLaws
© 2026 Triage Cancer®
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Enhanced Premium Tax Credits “Four in five customers are able to find a plan for $10 or less a month.”
Expired 12/31/2025
Household Size
100%
138%
150%
250%
400%
400% +
1
$15,960
$22,025
$23,475
$39,125
$62,600
2
21,640
29,863
31,725
52,875
84,600
3
27,320
37,702
39,975
66,625
106,600
$ help reduce monthly premiums to 8.5% of household income
4
33,000
45,540
48,225
80,375
128,600
5
38,680
53,378
56,475
94,125
150,600
6
44,360
61,217
64,725
107,875
172,600
© 2026 Triage Cancer®
(2026)
(2026)
(2025)
(2025)
(2025)
(2025)
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Medicare Part D – 2026
• $2,100 out-of-pocket maximum for Part D drug costs • Applies to: • Part D plans • Part C plans with drug coverage
• Does not apply to drugs covered by Part B!!! • If plan has a drug deductible, that counts towards the out-of-pocket maximum • Cap will continue to increase over time (e.g., $2,400 in 2027)
© 2026 Triage Cancer®
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Medicare Prescription Payment Plan • Out-of-pocket costs can be spread out through the calendar year (aka “smoothing”) • There is no interest charged on the payments • Run by your Part D drug plan • Voluntary program • You have to choose to sign up • You can cancel at any time, but you must pay your balance
• You pay nothing at the pharmacy • Instead, your plan will send you monthly bills for your out-of-pocket drug costs • This is different than your Part D plan monthly premium bill; and • Your Part D Explanation of Benefits document
• You can pay by check, credit, or debit card © 2026 Triage Cancer®
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Medicare Prescription Drug Exceptions Ask your HCP for supporting statement about why a drug is medically necessary for you •
Alternatives aren’t as effective, and/or
•
Alternatives would cause adverse effects
Timing • Can ask to expedite the request if you can show the standard timeframe will jeopardize life, health, or ability to regain maximum function • After receiving supporting statement, drug plan must provide written notice of decision within 72 hours (24 hours, if expedited request) Appeals • If your request for an exception is denied, appeal! TriageCancer.org/Checklist-MedicarePrescriptionRequest © 2026 Triage Cancer®
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Help Paying for Medicare Parts A & B Medicare savings programs (MSPs) • Helps pay for premiums; and sometimes deductibles, co-payments, & cost-share • Four types of MSPs: 1. Qualified Medicare Beneficiary (QMB – “Quimby”) Program helps eligible individuals pay for Part A and Part B premiums, as well as deductibles, coinsurance, and co-payments 2. Specified Low-Income Medicare Beneficiary (SLMB – “Slimby”) Program helps eligible individuals pay for Part B premiums. 3. Qualifying Individual (QI) Program helps pay the Part B premiums for certain individuals who are not eligible for Medicaid. 4. Qualified Disabled and Working Individuals (QDWI) Program helps eligible individuals pay their Part A premiums.
TriageCancer.org/QuickGuide-MedicareSavings © 2026 Triage Cancer®
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Help Paying for Medicare Part D - 2026 • Low-Income Subsidy (aka Extra Help): most people will pay no premium or deductible & have lower co-payments and cost-share • May be automatically enrolled, but can also apply • Income limit = 150% FPL; Resource limit = $16,590 (individual), $33,100 (married)* • Pay no more than $5.10 for each generic/$12.65 for each brand-name covered drug • www.ssa.gov/benefits/medicare/prescriptionhelp
• State Pharmaceutical Assistance Programs (SPAP): pays some premiums or drug costs • Programs not available in every state: www.medicare.gov/plan-compare/#/pharmaceutical-assistance-program/states/ © 2026 Triage Cancer®
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Consumer Protections: Appeals • Denials of coverage (aka “adverse benefit determination” (ABD)) • Internal appeals • External appeals (individual and employer plans) • AKA: Independent or External Medical Review • Conducted by an independent medical review organization (IRMO) or independent review entity (IRE) • State Health Insurance Agency: Triagecancer.org/StateResources • Cost: $0 if HHS process. Up to $25 if issuer contracts with IRO or uses state process • Is it worth it?
© 2026 Triage Cancer®
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Hurdle: Knowledge
© 2026 Triage Cancer®
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Hurdle: Staying Organized
• Keep track of: • Dates, times, and method of any contact (phone, email, etc.) • Names of people you talk to • Summaries of your conversations • Any documents you send or receive • Important dates
TriageCancer.org/AppealTrackingForm
• Good time to delegate to family and friends © 2026 Triage Cancer®
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Appeals Checklist Understand why your claim was denied Gather your evidence Submit necessary paperwork Pay attention to deadlines Remember the Golden Rule File external appeal if needed Expedite appeal if appropriate Stay organized Don’t give up! © 2026 Triage Cancer®
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Health Insurance Appeals Resources TriageCancer.org/HealthInsurance
• Quick Guide to Appeals for Employer-Sponsored & Individual Health Insurance • Quick Guide to Access to Medical Records • Health Insurance Appeals Tracking Form • CancerFinances.org – Health Insurance Appeals Module • Recorded Webinar: Health Insurance Appeals • Animated Video: When an Insurance Company Says No
© 2026 Triage Cancer®
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Managing Medical Bills • From your insurance company: We have received a claim
© 2026 Triage Cancer®
We are processing your claim
Explanation of Benefits
120
© 2026 Triage Cancer®
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Managing Medical Bills
• From your provider: • The bill
• Doesn’t always happen in this order! • • • • •
Wait for the EOB before paying any bills Compare EOB & Bills – check for errors! Ask questions of providers and insurance Was coverage denied? Appeal! Do you qualify for hospital charity care?
© 2026 Triage Cancer®
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Charity Care
• Nonprofit hospitals are required to offer free or discounted health care to patients with certain incomes • A/K/A financial assistance or ability to pay programs • Can include inpatient and emergency room services • Bill shouldn’t go to collections while application under review • Apply for help from Dollar For: DollarFor.org/TriageCancer
© 2026 Triage Cancer®
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Negotiate! • Contact providers if having trouble paying your bills • When: • Before unpaid bills sent to collections agencies
• What: • Ask for more time • Check to see if they would be willing to: • Write off a portion of your bill; • Negotiate a payment plan; or • Accept a lower lump sum payment Note: can work with other creditors, too! © 2026 Triage Cancer®
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Medical Bill Tracker TriageCancer.org/Worksheet-BillTracker
© 2026 Triage Cancer®
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© 2026 Triage Cancer®
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Benefits to Keeping Track . . .
• Paying co-pays & co-insurance when you visit a provider • What to do if you have already met your OOP maximum? • What to do when a provider asks you to pre-pay your co-insurance?
© 2026 Triage Cancer®
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Keep Records Of… Medical bills from all healthcare providers: Hospital admissions, clinic visits, lab work, diagnostic tests, procedures, treatments Drugs given & prescriptions ordered Claims filed
Payments from insurance companies and explanations of benefits Any pre-authorizations Dates, names, and outcomes of any correspondence with insurance companies or providers Non-reimbursed or outstanding medical and related costs Meals, lodging, and travel expenses (including gas, parking, and tolls) Your medical records *Some of these may be tax-deductible! © 2026 Triage Cancer®
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Triage Cancer Conference Educational event for: • Individuals diagnosed with chronic or serious medical conditions • Caregivers Online 2026: • Health care teams • May 15-16 • Advocates & others • November 6-7 Topics: • Being an Advocate TriageCancer.org/Conferences • Health Insurance • Finances “Absolutely amazing. Triage Cancer Conference supplied me with a lot of details on information that I thought I • Being Prepared knew....I was wrong. However, I do feel more confident in • Employment each of the topics that were discussed.” –Virtual Attendee • Disability Insurance *Free CEs/Contact Hours for nurses, social workers, & patient advocates *Free PDCs for HR professionals © 2026 Triage Cancer®
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Webinar Series Upcoming Topics: • August 26 ~ Ready to Return: Understanding Your Rights When Going Back to Work • September 16 ~ Understanding Changes to Medicaid & the Marketplace: What Health Advocacy Organizations Need to Know • September 22 ~ Open Enrollment: Reviewing, Reevaluation, Renewing Full Schedule & Registration: TriageCancer.org/Webinars Recordings of Past Webinars: TriageCancer.org/Past-Webinars *Free Contact Hour/CE for nurses, social workers, & patient advocates *Free PDCs for HR professionals © 2026 Triage Cancer®
“It is helpful to know this info at the beginning of a cancer diagnosis or at the VERY LEAST to know it exists, as you do not know what you do not know!” –Attendee
130
Legal & Financial Navigation Program Free, one-on-one help for: • Individuals diagnosed with cancer • Caregivers • Health care professionals
Health Insurance, Employment, Disability Insurance, Finances, Estate Planning, & More Our Navigation services: • Explain options • Provide accurate information • Empower you to take next steps
© 2026 Triage Cancer®
Start Online: TriageCancer.org/GetHelp For Spanish: TriageCancer.org/ConsigueAyuda 131
2026 MYELOMA ADVOCACY PRIORITIES & HOW YOU CAN GET INVOLVED Danielle Hillwig Doheny IMF Director of Public Policy & Advocacy
2026 Myeloma Advocacy Priorities & How You Can Get Involved Danielle Hillwig Doheny IMF, Director of U.S. Policy & Advocacy
Introduction | Advocacy at the IMF The IMF Advocacy Team collaborates with multiple stakeholders to inform and influence decision-making on the critical healthcare issues that directly impact myeloma patients.
The U.S. Advocacy Team advocates for equitable access to timely diagnosis, innovative treatments and research funding on Capitol Hill and with key regulatory agencies. The team advocates both alongside of and on behalf of the patient community that we serve.
Advocacy play a critical role to educate policymakers about the issues important to our community and motivate them to act.
What Do We Advocate For? The following policy principles are the foundation on which we prioritize our advocacy work. 1. Ensure Access to Care: We advocate for policies that ensure all myeloma patients have equitable, comprehensive, patientcentered care without insurance barriers that limit options or delay treatment initiation. 2. Eliminate Financial Barriers: We advocate for policies that allow myeloma patients access to treatments and supportive care interventions without facing financial hardships. 3. Advance Myeloma Research: We advocate for annual appropriations funding for myeloma research and the advancement of clinical trial eligibility and research protocols that ensure representation from diverse populations.
2026 U.S. Advocacy Priorities Snapshot 1. ENSURE ACCESS TO CARE
INSURANC E REFORM: DRUG ACCESS INSURANC E REFORM: DRUG ACCESS MEDICARE REFORM: PHYSICIAN ACCESS
Step Therapy Protocols Safe Step Act
PBM Reform PBM Reform Act
2. ELIMINATE FINANCIAL BARRIERS
INSURANC E REFORM: COINSURANCE
INSURANC E REFORM:
3. ADVANCE MYELOMA RESEARCH Annual Appropriations
Oral Parity Cancer Drug Parity Act FEDERAL FUNDING
Copay Accumulators HELP Copays Act
ANNUAL APPROPS
COPAYS
Tele-Health/Medicine Telehealth Modern. Act
MEDICARE REFORM: ANNUAL COST LIMITS
Inflation Reduction Act implementation Cap & Smoothing (MPPP), Drug Pricing, Drug Formularies
CLINICAL TRIAL ACCESS
NIH: National Cancer Institute, National Institute on Minority Health, ARPA-H CDC: Comprehensive Cancer Control Initiative DoD: Congressionally Directed Medical Research Program (CDMRP) for Myeloma. Primary care education, Focus on underserved, POC, rural settings and socioeconomically disadvantaged groups
How You Can Get Involved
Patients and caregivers are the most powerful voices in health policy. 13 7
Your Voice Matters in Washington, D.C. WHAT THIS IS: Each year, the International Myeloma Foundation brings myeloma patients and caregivers to Capitol Hill to meet with members of Congress. Together, we advocate for: • Better access to treatment • Stronger support for cancer research • Policies that improve the lives of people living with myeloma
HOW YOU CAN GET INVOLVED: No policy experience is needed. Just a willingness to share your experience. IMF provides: • Advocacy training • Policy briefings • Guidance every step of the way Email us to join the IMF Advocacy Master Class and prepare for the next Hill Day.
13 8
Advocacy Works: Protecting Cancer Research Funding Program
President’s FY26 Budget Proposal
Final FY26 Funding Outcome
NIH
-$18 billion cut proposed
+$415 million increase
NCI
-$2.7 billion cut proposed
+$128 million increase
ARPA-H
-$545 million cut proposed
Level funding
CDC Cancer Programs
Program eliminated
+$3 million increase
13 9
Myeloma Action Month Hill Day 2026
“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” — Margaret Mead 14 0
Addressing healthcare barriers for multiple myeloma patients depends on winning over the hearts and minds of policymakers. It is not enough to just identify an issue and have data-driven evidence/research to back it up. It is not even enough to work with coalition partners that agree with our point of view. We must convince policymakers to prioritize our issues, draft legislation and vote it into law. Email us at advocacy@myeloma.org Join Us! Join the Advocacy Team and share Your Story.
Thank You
MYELOMA 202: IMMUNOTHERAPY MADE SIMPLE Joseph Mikhael, MD, MEd, FRCPC, FACP, FASCO IMF Medical Advisor
MYELOMA 202: IMMUNOTHERAPY MADE SIMPLE
Discuss the concept of
immunotherapy and how it applies to myeloma
Review how we are using
immunotherapy already in myeloma
OBJECTIVES
Monoclonal Antibodies Antibody Drug Conjugates (ADCs) CAR (Chimeric Antigen Receptor) T Cell therapy Bispecific/Trispecific Antibodies
Predict the future of myeloma
and its reliance on immunotherapy…
The Immune System and Cancer
J Clin Invest. 2007 May 1; 117(5): 1137–1146.
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
Uhhhhh it’s complicated…. Myeloma Cell tic opto p a i Ant Effects
Myeloma Cell NFkB Site ing Bind
NFkB AKT MAPK
JAK–STAT
Increase in cytokine production and adhesion molecules
SHP2
NFkB–IkB complex
MEK
IL-6 TNFα
Cell organelles
cFLIP
FAS (CD95)
Pro-caspase B
cFLIP/FADD
Protein kinases
SDF1 IGF1
Block of programmed cell death FADD LFA1
FAS ligand Collagen fibers
VLA4 VCAM1
T Cells Fibronectin
MEK/MAPK
VEGF
NFkB–IkB complex
NFkB Binding Site
NFkB
BM Stromal Cells Angiogenesis Migration Growth
Natural-Killer Cells
TNFα
Inhibition of Anti-Myeloma Immunity Dendritic Cells Bruno B et al. Lancet Oncol. 2004;5:430-442.
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
Monocytes
Key Immunotherapy Approaches in Myeloma Monoclonal Antibodies
Daratumumab, Elotuzumab, Isatuximab
Antibody-Drug Conjugates
Belantamab
CAR T cell therapy
Ide-cel, cilta-cel
Bispecific Antibodies
Teclistamab, Talquetamab, Elranatamab, Linvoseltamab
Future Directions – MORE antibodies, novel CAR T and much more! © 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
Immunotherapy: Using Your Immune System to Fight MM
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
Targets on the Myeloma Cell Surface and Therapeutic Antibodies Bi-Specific Antibodies CAR-T
Bi-Specific Antibodies Talvey (Talquetamab) CAR-T
GPRC5D
FcRH5
SLAMF7
Monoclonal Antibodies Daratumumab and Darzalex Faspro Sarclisa (Isatuximab) TAK-079 MOR202
Antibody Drug Empliciti (Elotuzumab) Bi-Specific Antibodies
BCMA © 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
CD38
Immune Therapies Abecma (Ide-cel CAR-T) Carvykti (Cilta-cel CAR-T) Tecvayli (Teclistamab) Elrexfio (Elranatamab) Lynozyfic (Linvoseltamab) Other CAR-Ts Other Bi-Specific Antibodies
Antibody Drug Conjugates
How it works: An antibody directed at a target (BCMA) combined with a cytotoxic agent (chemotherapy) ADC = Antibody-Drug Conjugate BCMA = B-Cell Maturation Antigen ADCP/ADCC = Antibody-Dependent Cellular Cytotoxicity & Phagocytosis © 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
Image Credit: https://creativecommons.org/licenses/by-nc/3.0/
CAR T Cell Therapy
Myeloma Cell CAR T Cell .
CAR T Cell Therapy
Abecma (Idecabtagene vicleucel)
Ide-cel
Carvykti (ciltacabtagene autoleucel)
cilta-cel
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
Intravenous
Harnessing the Power of a Patient’s Own Immune System to Target and Kill Myeloma
Apheresis
ENGINEERED AUTOLOGOUS CELL THERAPY
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
Manufacturing Process
Infusion
The Process of CAR T Cell Therapy
Hucks G, Rheingold SR. Blood Cancer J. 2019;doi:10.1038/s41408-018-0164-6. © 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
Toxicities with CAR T Cell Therapy Early Long-term Delayed
(Days/Weeks)
(Weeks/Months)
(Years)
Cytokine Release Syndrome (CRS) Neurotoxicity (ICANS)
Delayed neurotoxicity (Parkinsonism, cranial nerve palsy)
Secondary Cancers
IEC-Colitis
Unknown long-term effects
IEC-HS Cytopenias and infections ICANS = immune effector cell-associated neurotoxicity syndrome IEC = immune effector cell © 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
The Future of CAR T Cell Therapy Novel CAR Ts with unique features non BCMA targets (GPRC5D, FcRH5 and others) “fast Cars” with shorter manufacturing time enhanced binding
dual targeting d-domain binding
in vivo CAR T – without the need of T cell collection or lymphodepleting chemotherapy Allo-CAR T – external T cells infused into the patient
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
Bispecific Antibodies – BCMA • Incorporates 2 antibody fragments to target and bind both tumor cells and T cells • Brings target-expressing MM cells and T cells into close proximity, enabling T cells to induce tumor-cell death • BCMA = B Cell Maturation Antigen
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
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Bispecific Antibodies: Mechanism of Action • Incorporates 2 antibody fragments to target and bind both tumor cells and T cells • Brings target-expressing MM cells and T cells into close proximity, enabling T cells to induce tumor-cell death
Targets of Bispecific Molecule Vary Agent
Tumor Cell Target
T-Cell Target
Teclistamab Elranatamab Linvoseltamab
BCMA
CD3
Talquetamab
GPRC5D
CD3
Cevostamab
FcRH5
CD3
“Off the Shelf” Advantage • No manufacturing process, unlike CAR T-cell therapy (but like ADC/belantamab therapy) • Thus, no delay between decision to treat and administration of drug ADC = Antibody-Drug Conjugate; BCMA = B-Cell Maturation Antigen; CD3 = Cluster of Differentiation 3; FcRH5 = Fc receptor-homolog 5; GPRC5D = G-protein coupled receptor family C group 5 member D © 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
Image Source: Shah N, et al. Leukemia. 2020;34:985–1005. Creative Commons License: CC BY 4.0. Barilà G, et al. Pharmaceuticals (Basel). 2021;14(1):40.
The Future of Bispecific Antibodies Novel targets
FcRH5 (Cevostamab)
More convenient dosing
monthly (Etentamig)
Trispecific Antibodies
dual MM Cell targeting – potential for enhanced binding and less resistance
Combinations with other MM agents (TeclistamabDaratumumab) © 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
Conclusions •
Immunotherapy has completely transformed cancer care
•
In MM we have several forms of immunotherapy already approved and many many more to come
•
There may be a day when immunotherapy may replace traditional induction therapy and stem cell transplant
•
The next wave of immunotherapy will be likely MORE effect and have LESS side effects
•
The IMF houses the immunotherapy database so we can learn more about this treatment even more quickly
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
UNDERSTANDING CLINICAL TRIALS Joseph Mikhael, MD, MEd, FRCPC, FACP, FASCO IMF Medical Advisor
THE 5 W’S OF CLINICAL TRIALS IN MYELOMA
WHAT? WHY? WHO? WHEN? WHERE?
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
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Q&A WITH GUEST PANEL
Please Join us now for the Welcome Reception In the Courtyard Outside
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
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TOMORROW MORNING:
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
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SCAN THIS QR CODE FOR KEY IMF RESOURCES Helpful Links to: • Slides from Friday & Saturday Programming • Evaluations for Friday & Saturday Programming • SparkCures Search Engine specific for the California region • Ways to Give • IMF Website © 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
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THANK YOU TO OUR SPONSORS!
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
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OUR MISSION:
Improving the quality of life of myeloma patients while working toward prevention and a cure.
OUR VISION:
A world where every myeloma patient can live life to the fullest, unburdened by the disease.
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
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