2026 Cleveland PFS Slides - Friday

WELCOME TO THE CLEVELAND PATIENT

& FAMILY SEMINAR

FRIDAY, MAY 1, 2026

HEATHER COOPER ORTNER

PRESIDENT & CEO

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 Ohio region

• Ways to Give

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 Myeloma 202: Immunotherapy Made Simple

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

OUR MISSION

Improving the quality of life of myeloma patients while working toward prevention & a cure

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

MEET THE SUPPORT GROUP TEAM!

Robin Tuohy Vice President, Patient Support

Jenn Wieworka Director, Support Groups

Becky Bosley Director, Support Groups Yara William Associate Director, Support Groups Katie Atkins Associate Director, Support Groups

Cecilia Romero Project & Technology Manager, Support Groups

LOCAL SUPPORT GROUPS

• Cleveland, OH

• Cincinnati, OH

• Columbus, OH

• Youngstown, OH

• Canton, OH

• Cleveland Clinic

• Pittsburgh, PA

SPECIAL INTEREST GROUPS

MM Families

For patients & care partners with young children

Living Solo & Strong

For patients without a care partner

Veterans SIG

For those who served our country MM in the Middle

For those diagnosed before age 50

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

EDUCATION – WRITTEN

MYELO

2026 PATIENT EDUCATION - US

Patient & Family Seminars

• Boca Raton, FL – March 13 – 14

• Cleveland, OH – May 1 – 2

• Los Angeles, CA – August 14 – 15

• Short Hills, NJ – October 2 – 3

Myeloma Community Workshops

• Kansas City, MO – March 28

• Virtual – April 20 – Newly Diagnosed

• Minneapolis, MN – April 25

• Detroit, MI – June 27

• Salt Lake City, UT – August 1 • Virtual – August 24 - Relapsed

Portland, OR – September 19

San Diego, CA – October 24

Phoenix, AZ – November 14

Virtual – November 16

EDUCATION – AWARENESS - MAM

11.8 K Mentions

60M Reach

346.5K Interactions

You are NOT Alone

THANK YOU!

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

MM101: The Big Picture Perspective

Patient and Family Seminars

How common is Myeloma in the US?

How common is Myeloma?

Percent of New Cases by Age

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

In most cases, the honest truth

WE DON’T KNOW

What is the Connection Between Bone Marrow & Myeloma ?

Hematopoietic stem cell

Red Blood Cells Carry Oxygen White Blood cell Fight Infection Platelets Prevent Bleeding

Understanding (Mono)clonal Plasma Cells

Heavy Chain: G, A, M, D, E

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

Is Myeloma the Only Protein Disorder?

• AL-Amyloid

• POEMS

• Light or Heavy Chain Deposition Disease

• MGCS = Clinical

• MGRS = Renal

Condition MGUS1-4 (Monoclonal Gammopathy of Undetermined Significance)

1-5,8 (Smoldering Multiple Myeloma)

• MGNS = Neuro * In clinical trial

Multiple Myeloma and Myeloma Defining Events

Test Name

Testing For Myeloma: Blood & Urine

What it means

CBC + differential

Complete metabolic panel

Beta-2 Microglobulin (B2M)

Lactate Dehydrogenase (LDH)

Serum Immunofixation and Protein electrophoresis (SPEP+IFE)

Immunoglobulins (G, A, M, D, E)

Free light chain assay with kappa/lambda ratio

Urine immunofixation & protein electrophoresis (UPEP+IFE)

Hemoglobin, WBC, Platelets

Creatinine, Calcium, Albumin, Liver function

Part of staging and risk stratification

Measures the level of normal and clonal protein

Identifies the type of clonal protein

Measures the level of normal and clonal protein

Identifies the type of clonal protein

Imaging:

Testing For Myeloma: 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)

Healthy bone versus myeloma bone disease

Testing For Myeloma: Bone Marrow

Bone marrow biopsy & aspirate

• Bone marrow plasma cells (%)

• Congo Red staining if concern for

Bone marrow genetics

• Cytogenetics

• Fluorescence in situ hybridization (FISH)

• Next generation sequencing (NGS)

(p53del)

*15-20% of people with NDMM

What is the Myeloma Treatment Landscape?

Initial Therapy (a.k.a. Frontline, Induction) Quad Therapy (ex. CD38+ MoAb + VRd)

Cell

Drug Class Overview

(thalidomide)

(lenalidomide)

(pomalidomide)

(daratumumab) Sarclisa (isatuximab)

(elotuzumab)

Drug Class Overview

Peptide Drug Conjugate* Pepaxto (Melphalan Flufenamide) Melflufen

BCMA Targeted Antibody Drug Conjugate (ADC)

Blenrep (belantamab mafodotinblmf) Bela, Belamaf, or B

Abecma (idecabtagene vicleucel) Ide-cel

CAR T Cell therapy

Bispecific Antibodies

Pipeline

Carvykti (ciltacabtagene vicleucel) Cilta-cel

Tecvayli (teclistimab)

Talvey (Talquetamab)

Elrexfio (Elranatamab)

Lynozyfic (Linvoseltamab

Tec Talq Elra Linvo

Cevostamab, Iberdomide, Mezigdomide, Anito-cel, Venetoclax

AZD0120, Etentamig, KLN-1010, Trispecifics …………………………… MORE TO COME!

* This agents is currently off the market in the US but available through special programs

SC or SQ = Subcutaneous, Under the skin; IV = Intravenous

Measuring Disease Response: IMWG Response Criteria

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

When Do I Need A New Treatment?

• Not every relapse requires immediate therapy

• Each case is different

Symptomatic or extramedullary disease

Asymptomatic high-risk disease or rapid doubling time or extensive marrow involvement

Initiate Treatment

Asymptomatic biochemical relapse on 2 consecutive assessments

Consider Observation Monitor Carefully Consider Treatment Patient-/Disease-Specific Monitor Carefully

Targets on the Myeloma Cell Surface and Therapeutic Antibodies

Bi-Specific Antibodies

Talvey (Talquetamab) CAR-T

Antibody Drug

Empliciti (Elotuzumab)

Bi-Specific Antibodies

Bi-Specific Antibodies

CAR-T

Monoclonal Antibodies

Daratumumab and Darzalex Faspro Sarclisa (Isatuximab) TAK-079 MOR202

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

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

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

“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

Image Source: Shah N, et al. Leukemia. 2020;34:985–1005. Creative Commons License:

The Process of CAR T Cell Therapy

CAR T therapy recommended. Insurance approved and ready to move forward.

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

 Elimination of disease, down to Minimal Residual Disease Negative (MRD-)

 Prolonged deep response Off Therapy

 Survival continues to improve in MM with an average over 10 years now!

 A recent DRAFT definition is being considered:

The Evolution of Myeloma Therapy

VD

Rev/Dex

CyBorD

VTD

VRD KRD

D-VMP

DRD

Tandem ASCT (?)

Nothing

Thalidomide?

Bortezomib

Ixazomib

Lenalidomide

Combinations

D-VRD

Isa-VRD

D-KRD

Isa-VRD “More” induction?

Bortezomib

Lenalidomide

Carfilzomib

Pomalidomide

Selinexor

Panobinostat

Daratumumab

Ixazomib

Elotuzumab

Isatuximab

Belantamab mafodotin*

Melphalan flufenamide*

Idecabtagene autoleucel

Ciltacabtagene autoleucel

Teclistamab, Talquetamab

Elranatamab, Linvoseltamab

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.

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

THE UNSEEN IMPACT OF MYELOMA:

TAKING CARE OF YOUR EMOTIONAL HEALTH

Becky Bosley, BSN, RN IMF Director, Support Groups

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

Validating All Emotions

• This discussion includes candid reflections on the emotional impact of a myeloma diagnosis, including difficult and sometimes heavy themes such as fear, grief, uncertainty, and depression.

• This may initially feel uncomfortable as we navigate what it’s like to live with myeloma, however, we hope to honestly recognize challenges, validate all emotions, and introduce coping strategies to help support both patients and care partners.

• While every myeloma patient & care partner's emotional response to living with myeloma is different, we want to steadfastly support the entire myeloma community, no matter where you are on this spectrum.

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.

Initial Feelings

Getting a diagnosis of cancer can feel like getting the wind knocked out of you.

https://opentextbc.ca/introductiontopsychology/chapter/10-1-the-experience-of-emotion/

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

Anger

It is completely normal to experience anger towards:

• Doctors

• Healthcare team

• Yourself

• God

Fear & Worry

Patients describe many fears after a myeloma diagnosis, including:

• Fear of pain or treatment

• Fear of rejection/loneliness

• Practical worries (finances, housing, career, etc.)

• Fear about the future

• Fear of death and dying

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.

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.

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

Depression

Symptoms of depression include:

Sleep disturbance  Loss of interest/pleasure in activities that used to feel exciting (anhedonia)

• Feelings of guilt or worthlessness

• Changes in energy or excessive fatigue

• Appetite/weight changes

• Psychomotor disturbance

• Suicidal thoughts

• Depressed mood

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

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.

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.

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.”

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.

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.

COPING WITH YOUR EMOTIONS

Coping with Heavy Emotions

• Awareness

• Identify

• Accept

• Recognize

• Stay Curious

• Let go

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.

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

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

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

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.

WELLNESS TIPS & RESOURCES FOR SUPPORT

Support Groups Provide a Sense of Belonging

• Included

• Welcomed

• Connected

• Accepted

• Involved

• Supported

• Heard

• Valued

• Seen

• Hopeful

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!

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

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 Ohio region

• Ways to Give

Navigating Insurance & Medical Bills

Navigating Insurance & Medical Bills

Kathryn J. Strobach, Esq., MSW 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

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.

About Triage Cancer

• 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

Don’t

Understand Health Insurance?

You Are Not Alone.

Source: 2017 PolicyGenius Health Literacy Survey

Cost to Have Health Insurance

• Premium: each month (fixed $ amount)

Terms: Costs

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):

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.

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

Comparing Plan Options

$200 x 12 = $2,400 + $8,000 = $10,400

Total costs for year = (monthly premium x 12) + OOP max $275 x 12 = $3,300 + $6,000 = $9,300 $400 x 12 = $4,800 + $2,000 = $6,800

Note: for in-network providers only

• Cost

Key Considerations

• 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?

TriageCancer.org/video-pickingaplan

When to Enroll?

• Employer plans: varies (often in the Fall)

• Medicaid: accepted year round

• Medicare: Oct. 15 – Dec. 7*

• 2026 Marketplace: Nov. 1 – Jan. 15*

• 2027 Marketplace OEP:

• Federal: Nov. 1 – Dec. 15

• States may have open enrollment periods through Dec. 31

*Plans are for a calendar year

Where Are There Opportunities to Lower Costs? Insura

nce Compa

ny Government: Medicare, Medicaid, Military, State & Local Programs, etc.

Employer

• 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

Enhanced Premium Tax Credits

“Four in five customers are able to find a plan for $10 or less a month.”

reduce monthly premiums to 8.5% of household income Expired 12/31/2025

400% + (2025) $ help

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)

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

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!

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.

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/

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?

Hurdle: Knowledge

• 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

• Good time to delegate to family and friends

TriageCancer.org/AppealTrackingForm

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!

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

Managing Medical Bills

• From your insurance company:

We have received a claim We are processing your claim Explanation of Benefits

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?

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

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!

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?

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!

Educational event for:

Triage Cancer Conference

• Individuals diagnosed with chronic or serious medical conditions

• Caregivers

• Health care teams

• Advocates & others

Topics:

• Being an Advocate

• Health Insurance

• Finances

• Being Prepared

• Employment

• Disability Insurance

Online 2026:

• May 15-16

• November 6-7 TriageCancer.org/Conferences

“Absolutely amazing. Triage Cancer Conference supplied me with a lot of details on information that I thought I knew....I was wrong. However, I do feel more confident in each of the topics that were discussed.” –Virtual Attendee

*Free CEs/Contact Hours for nurses, social workers, & patient advocates

*Free PDCs for HR professionals

Upcoming Topics:

• May 27 ~ Coping with Stress

• June 23 ~ Beyond Medical Care: Finding the Help You Need

• July 22 ~ Managing Health Insurance Transitions

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

“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

2026 Myeloma Advocacy Priorities

& How You Can Get Involved

Danielle Doheny

IMF Director of Public 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 on Capitol Hill and with key regulatory

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.

U.S. Advocacy Priorities Snapshot

1. ENSURE ACCESS TO CARE

2. ELIMINATE FINANCIAL BARRIERS

3. ADVANCE MYELOMA RESEARCH

INSURANC E REFORM: DRUG ACCESS

Step Therapy Protocols Safe Step Act

INSURANC E REFORM: COINSURANCE

Oral Parity Cancer Drug Parity Act

INSURANC E REFORM: DRUG ACCESS PBM Reform PBM Reform Act

INSURANC

E REFORM: COPAYS Copay Accumulators HELP Copays Act

FEDERAL FUNDING

ANNUAL APPROPS

Annual Appropriations

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.

MEDICARE REFORM:

PHYSICIAN ACCESS

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

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.

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.

Advocacy Works: Protecting Cancer Research

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

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

Thank You

Myeloma 202: Immunotherapy Made Simple

Joseph Mikhael, MD, MEd, FRCPC, FACP, FASCO

Medical Advisor, International Myeloma Foundation

MM202: Immunotherapy Made Simple

Patient and Family Seminars

Objectives

• Discuss the concept of immunotherapy and how it applies to myeloma

• Review how we are using immunotherapy already in myeloma

– 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.

Uhhhhh it’s complicated….

Myeloma Cell

Increase in cytokine production and adhesion molecules Block of programmed cell death FAS (CD95)

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!

Immunotherapy – Using Your Immune System to Fight MM

Targets on the Myeloma Cell Surface and Therapeutic Antibodies

Bi-Specific Antibodies

Talvey (Talquetamab) CAR-T

Antibody Drug

Empliciti (Elotuzumab)

Bi-Specific Antibodies

Bi-Specific Antibodies

CAR-T

Monoclonal Antibodies

Daratumumab and Darzalex Faspro Sarclisa (Isatuximab) TAK-079 MOR202

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

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

Image Credit: https://creativecommons.org/licenses/by-nc/3.0/

CAR T Cell Therapy

ENGINEERED AUTOLOGOUS CELL THERAPY

The Process of CAR T Cell Therapy

Hucks G, Rheingold SR. Blood Cancer J. 2019;doi:10.1038/s41408-018-0164-6.

Early (Days/Weeks)

Toxicities with CAR T Cell Therapy

Delayed (Weeks/Months)

Long-term (Years)

Cytokine Release Syndrome (CRS)

Neurotoxicity (ICANS)

Delayed neurotoxicity (Parkinsonism, cranial nerve palsy)

IEC-Colitis

Second cancers

Unknown long-term effects

IEC-HS

Cytopenias and infections

ICANS = immune effector cell-associated neurotoxicity syndrome

IEC = immune effector cell

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

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

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

“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

Image Source: Shah N, et al. Leukemia. 2020;34:985–1005. Creative Commons License:

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 (Teclistamab-Daratumumab)

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

Understanding Clinical Trials

Joseph Mikhael, MD, MEd, FRCPC, FACP, FASCO,

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 Ohio region

• Ways to Give

Conclusions

Clinical Trials are a critical part of myeloma therapy

Every myeloma patient should at least consider participation in a trial when relevant

The IMF is deeply committed to improving access to clinical trials, especially in those who have been historically underrepresented

The IMF will continue to expand its work in clinical trials – STAY TUNED!

Q&A

WITH GUEST PANEL

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 Ohio region

• Ways to Give

5:15 – 6:15 PM

Erie Room

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.