OCTOBER 3 & 4, 2025
Thank you to our sponsors!
Welcome and Agenda Review
Robin Tuohy, Vice President, Patient Support
International Myeloma Foundation
Hot Topics in Myeloma
Joseph Mikhael, MD, MEd, FRCPC, FACP, FASCO
Chief Medical Officer, International Myeloma Foundation
Patient Empowerment: Shared Decision Making
Tiffany Richards, PhD, ANP-BC, AOCNP®
University of Texas MD Anderson Cancer Center, Houston, TX
FRIDAY AGENDA
Myeloma 101: The Big Picture Perspective with Q&A
Joseph Mikhael, MD, MEd, FRCPC, FACP, FASCO,
Chief Medical Officer, International Myeloma Foundation
BREAK
Navigating Insurance & Medical Bills
Monica Bryant, Esq., COO
Triage Cancer
Emotional & Physical Wellbeing: Practical Nutrition Strategies for Optimizing Life with Multiple Myeloma
Joy Heimgartner, MS, RDN, CSO, CNSC, LD
Mayo Clinic, Rochester, MN
Walk through the IMF Website
Robin Tuohy, VP Patient Support
International Myeloma Foundation
Q&A with Guest Panel
Day 1 Recap, Day 2 Announcements & Evaluations
Presentation Slides: Are available by scanning the QR code, Instructions are on the QR code handout on each table.
Program Evaluations: evaluations at the end of the program or on your way out.
Restrooms: Turn left exiting the meeting room and bathrooms are on your left before the lobby
Badge Holders: Please return your badge holders and we can recycle them
Wifi: Network – Marriott Bonvoy Conference, Password - patient104
Parking: Onsite parking in the South Lot is complimentary
We greatly appreciate your time and feedback!
S. Vincent Rajkumar, MD IMF Board Chair
Thomas Martin, MD
UCSF, Helen Diller Family Comprehensive Cancer Center
Wee Joo Chng, MD
National University of Singapore
María-Victoria Mateos, MD, PhD University of Salamanca
Vania Hungria, MD, PhD Santa Casa de São Paulo
Joseph Mikhael, MD, MEd, FRCPC, FACP IMF Chief Medical Officer
Sigurður Yngvi Kristinsson, MD, PhD University of Iceland
Philippe Moreau, MD University Hospital of Nantes
Shaji Kumar, MD Mayo Clinic
NIkhil Munshi, MD Dana-Farber Cancer Institute
Jesús San Miguel, MD, PhD University of Navarra
Sagar Lonial, MD, FACP
Winship Cancer Institute, Emory University
Saad Zafar Usmani, MD, MBA, FACP, FASCO
Memorial Sloan Kettering Cancer Center
Shared Experiences Help to Better Understand the Myeloma Journey
• Support Groups empower patients & care partners with information, insight & hope
• The IMF provides educational support to a network of over 150 myeloma specific groups
150+ US Support Groups
Over 200 Support Group Visits/year
Univ. of IL at Chicago
Meets virtually on the 2 Tuesday of each month at 6:30 PM Central Time
Aurora
Meets hybrid on the 1st Wednesday of each month at 6:00 PM Central Time
University of Chicago
Meets virtually on the 2nd Wednesday of each month at 10:30 AM Central Time
Mokena
Meets virtually on the last Thursday of each month at 4:00 PM Central Time
Northbrook
Meets virtually on the 1st Wednesday of each month at 7:00 PM Central Time
Fort Wayne
Meets hybrid on the 1st Tuesday of each month at 6:00 PM
Central Time
Bloomington
Meets hybrid on the 2nd Tuesday of each month at 5:30 PM
Central Time
Indianapolis
Meets in-person on the 1st Monday of each month at 6:00 PM Central Time
Special interest groups are designed as a supplemental support for specific populations of patients, in addition to their local Support Groups
MM Families
Founded in 2021
For patients & care partners with young children
Las Voces de Mieloma
Founded in 2022
For Spanish speaking patients & care partners
Living Solo & Strong
Founded in 2022
For patients without a care partner
Click here for more inf
Smolder Bolder
Founded in 2023
For smoldering myeloma patients & care partners
Veterans SIG
Founded in 2025
For those who served our country
High Risk Multiple Myeloma
Founded in 2023
For high-risk myeloma patients & care partners
Care Partners Only
Founded in 2024
For myeloma care partners only
• Boca Raton, FL – March 14 – 15
• Philadelphia, PA – May 2 – 3
• Los Angeles, CA – August 15 – 16
• Chicago, IL – October 3 – 4
Community Workshops
• Virtual - March 4 – replay available
• San Mateo, CA - March 29
• Atlanta, GA - April 5
• Edina, MN - April 26
• Denver, CO - June 21
• Virtual – July 29 – replay available
• Seattle, WA - August 9
• Waltham, MA - September 27
• Raleigh-Durham, NC - November 15
• Virtual – November 17
1. Ensure Access to Care: We advocate to ensure all myeloma patients have equitable, comprehensive, patient-centered 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.
The IMF Grassroots Advocacy Program is multi-faceted and growing
• Advocacy Training & Leadership Development
• Policy and Legislative Education
• Grassroots Campaign Planning
• Health Policy Forums & Roundtables
• Advocacy Resource Development
• Storytelling and Personal Narratives
Heather Cooper Ortner Incoming President & CEO International Myeloma Foundation
“I am humbled to serve alongside so many who are making a different every day for patients and families affected by myeloma, and I look forward to building on the IMF’s legacy of impact”
Joseph Mikhael, MD, MEd, FRCPC, FACP, FASCO Chief Medical Officer, International Myeloma Foundation
Tiffany Richards, PhD, ANP-BC, AOCNP®
University of Texas MD Anderson Cancer Center, Houston, TX
Tiffany Richards, PhD, ANP-BC, AOCNP® Manager, Myeloma Advanced Practice Providers Department of Lymphoma/Myeloma MD Anderson Cancer Center IMF Nurse Leadership Board Member
OUR VISION:
A world where every myeloma patient can live life to the fullest, unburdened by the disease.
OUR MISSION:
Improving the quality of life of myeloma patients while working toward prevention and a cure.
• Review Shared Decision Making (SDM) Concepts
• Identify Influencing Factors To Treatment Decision Making
• Discuss Strategies To Enhance Patient Empowerment & Promote Shared Decision Making
“The aim of shared decision making is to ensure that:
• Patients understand their options and the pros and cons of those options.
• Patient's goals and treatment preferences are used to guide
https://www.ahrq.gov/health-literacy/professional-training/shared-decision/index.html
https://www.ahrq.gov/cahps/quality-improvement/improvement-guide/6-strategies-for-improving/communication/strategy6i-shared-decisionma king.html#6i1
Identify that a decision is needed: The HCP informs the patient that a decision is to be made and that the patient's opinion is important (Choice talk).
Understand the options:
The HCP explains the evidence-based options and their pros and cons. The patient expresses their preferences, and the HCP supports the patient in decision-making (Option talk).
Come to a decision:
The HCP and patient discuss the patient's wish to take part in the decision making and incorporate the patient's values and preferences into the decision (Decision talk).
Follow-up:
Review and evaluate the decision, adjust as needed
Patients, regardless of age, want to be a part of treatment decision-making
Reduces uncertainty and alleviates concerns
Decisions reflect personal and family values and preferences
Requires staying informed
Promotes patient and care partner engagement and sense of empowerment
Positive impact on QOL and continuation on therapy
https://www.ahrq.gov/cahps/quality-improvement/improvement-guide/6-strategies-for-improving/communication/strategy6i-shared-decisionmaking.ht
“The 'efficacy' of treatment means different things to different patients, and treatment decision-making in the context of personalized medicine must be guided by an individual's composite definition of what constitutes the best treatment choice.” Terpos, et al.
Disease-Derived
Biology: Risk stratification, Urgent intervention needed vs time to consider options
Patient-Derived
Treatment: Availability/access, effectiveness, toxicity, current research
Understanding complex treatment options
Physical and emotional wellness
Comfort in speaking up “Doctor knows best”
Financial, Cultural and Religious factors
Care partner & social network, transportation
Provider-Derived
Time limitations
Support for patient involvement
Provider bias and preference
https://www.ahrq.gov/cahps/quality-improvement/improvement-guide/6-strategies-for-improving/communication/strategy6i-shared-decisionmaking.ht
ml#6i1 https://www.valueinhealthjournal.com/action/showFullTableHTML?isHtml=true&tableId=tbl4&pii=S1098-3 015%2822%2900198-X
Seek Information, Understand your options
Use caution considering stories of personal experiences
Your healthcare team members are resources
Use reliable and current sources of information
IMF Website: http://myeloma.org
• Publications
• Videos and Replays
• Future Events, both in-person & virtual
Consider your priorities
Consider your goals/values/preferences
Include your care partner/network in the discussion
Be a part of the conversation, create a dialog
Ask questions & express your goals/values/preferences
Ask for time to consider options, if needed
Arrive at a treatment decision together
Arrange follow up to review and adjust the plan, if needed
Myeloma specialist and General Heme/Onc
Primary care: for health screening, general check ups, vaccinations
Sub-specialists: specialty needs
Stay connected
Keep a contact list of your providers
Know who to contact for more information Subspecialists
Prepare
Medications: Bring a current list of prescribed and over-thecounter
Questions: Prioritize questions & concerns including financial issues
Paperwork needing medical signature (ex FMLA, prior authorizations)
Inform
Updates: Medical or life changes since your last visit
Symptoms: How have they changed (improved, worsened, stable)? Keep a symptom diary. Bring it along
Communicate effectively so your health care team can help
Follow Up
“Next Steps”: Future appointments, medication changes, plan of care. Ask for the information in writing or on your patient portal
Include a care partner, especially for pivotal appointments
Check with your healthcare team –
Is telemedicine an option?
What is the process and what technology is needed?
Are labs needed in advance? Do you need an order?
Preparation is similar for “in-person” appointment PLUS:
Location: quiet, well-lit location with strong Wi-Fi is best
Yourself: Do you need to show a body part - wear accessible clothing
Vital signs (blood pressure, temp, heart rate, weight) selfserve blood pressure cuff is available at many pharmacies and for purchase
Include a care partner, especially for pivotal appointments
Care partners assist in many ways
Myeloma causes the highest burden of symptoms, most commonly effecting people of older age with other medical issues. Care partner support is valuable in SDM
Attending medical appointments, being present to learn and discuss possible treatment options and alert the medical team of side effects to treatment
Some treatment options available only if care partner support exists
Care partners can be one person or a rotation of many people
Building a partnership is based in good communication
Finding the balance:
- helping the patient with needed activities while maintaining a sense of independence
- allowing the care partner to have time for good self-care
Over the next two days:
Evaluate where you are at in the process (What decisions need to be made?)
Absorb the information being presented (What are the options?)
Consider how the information impacts you and your family (What are your preferences?)
Create questions that will lead to better understanding (What more do I need to know before making a decision?)
Be an active member of your health care team
Joseph Mikhael, MD, MEd, FRCPC, FACP, FASCO, Chief Medical Officer, International Myeloma Foundation
Joseph Mikhael, MD, MEd, FRCPC, FACP, FASCO
Professor, Translational Genomics Research Institute (TGen), City
of
Hope
Cancer
Center Chief Medical Officer, International Myeloma Foundation
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 Exposu
res
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
Hematopoietic stem cell
Red Blood Cells Carry Oxygen White Blood cell Fight Infection Platelets Prevent Bleeding
Chain = M-Spike
65% IgG – most common
20% IgA – associated with AL Amyloid
5%
Less common: IgD, IgE, IgM
• AL-Amyloid
• POEMS
• Light or Heavy Chain Deposition Disease
• MGCS = Clinical
• MGRS = Renal
• MGNS = Neuro
Condition
Clonal plasma cells in bone marrow
Likelihood
Myeloma
MGUS1-4
(Monoclonal Gammopathy of Undetermined Significance)
SMM1-5,8 (Smoldering Multiple Myeloma) Active Multiple Myeloma6-8
* In clinical trial
Test Name
CBC + differential
Complete metabolic panel
Beta-2 Microglobulin (B2M)
What it means
Hemoglobin, WBC, Platelets
Creatinine, Calcium,
Albumin, Liver function
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
Urine immunofixation & protein electrophoresis (UPEP+IFE)
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:
– 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
• Cytogenetics
• Fluorescence in situ hybridization (FISH)
• Next generation sequencing (NGS)
• Updated as new information becomes available
• Helps to guide therapy and measure response to treatment
• Provides some prognostic value
• Standardizes terminology in medical practice
in more than 20% of sorted plasma cells
2 among t(4;14) or t(14;16) or t(14;20)
Initial Therapy (a.k.a. Frontline, Induction)
HD-Melphalan + Stem Cell Transplant (ASCT)
Quad Therapy (ex. CD38+ MoAb + VRd) Consolidation Therapy
Maintenance
Treatment for Relapse
Supportiv
e Care and Living Well
(thalidomide)
(lenalidomide)
(pomalidomide)
Peptide Drug Conjugate*
BCMA Targeted Antibody Drug
Conjugate (ADC)*
CAR T Cell therapy
Bispecific Antibodies
Pepaxto (Melphalan Flufenamide)
Blenrep (belantamab mafodotin-blmf) Bela, Belamaf, or B
Abecma (idecabtagene vicleucel) Ide-cel
Carvykti (ciltacabtagene vicleucel)
Tecvayli (teclistimab)
Talvey (Talquetamab)
Elrexfio (Elranatamab)
Linozyfic (Linvoseltamab)
Cilta-cel
Tec Talq Elra Linvo
Pipeline
* These agents are currently off the market but available through special programs
Cevostamab, Iberdomide, Mezigdomide, Venetoclax Linvoseltamab, LCAR-B38M, ABBV-383 …………………………… MORE TO COME!
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
MRD refers to the persistence of residual tumor cells after treatment and is responsible for relapse1
Current techniques can detect MRD with a sensitivity of 10-6 for MM cells2
MR→PR→ VGPR→CR →sCR
Reduce the amount of M protein (as measured by serum protein electrophoresis) or light chains (as measured via the free light chain test) to the lowest level possible.
Eliminate myeloma cells from the bone marrow (as measured via minimal residual disease [MRD] testing).
Improve quality of life with as few treatment side effects as possible.
Provide the longest possible period of response before first relapse.
Prolong overall survival.
1. Most patients will be given a combination of drugs to control the disease quickly- usually a QUADRUPLET
2. We don’t “save the best for last” because early therapies have a long term effect on survival
3. We seek a DEEP and DURABLE response
4. We mix and match from the 3 major classes of drugs and add steroids:
Proteasome Inhibitors – most often botezomib (Velcade)
Immunomodulatory Drugs – lenalidomide (Revlimid)
Monoclonal Antibodies – daratumumab (Darzalex) and Isatuximab (Sarclisa)
5. We decide early on whether someone will have a stem cell transplant
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)
Other CAR-Ts
Other Bi-Specific Antibodies
1L = first line; 2L = second line; 3L = third line; 4L = fourth line; 5L = fifth line; LOT = line of therapy; MGUS = monoclonal gammopathy of undetermined significance; misc = miscellaneous; MM = multiple myeloma; M-protein = myeloma protein; SMM = smoldering MM.
Yong K, et al. Br J Haematol. 2016;175:252-264. Figure modified from Keats JJ, et al. Blood. 2012;120:1067-1076.
1. Depth of response matters
2. High risk vs standard risk - need more aggressive treatment in high risk
3. Balance efficacy and toxicity initially and constantly assess
4. Overcome drug resistance - change mechanism of action whenever possible
5. Shared decision making ensures patient preference is prioritized
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/
• 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
“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
Requiring Treatment Stable or Unmeasurable Disease, Receiving Treatment Control is the immediate priority with active disease Cure remains the overall goal
Defining “Cure” has many considerations: Minimal Residual Disease Negative (MRD-)
Time Off Therapy Functional Cure
Unmeasurable Disease, Receiving No Treatment Active Disease
Overall population (N=97); median follow-up: 61.3 months
Progression-free survival
32 of 97 (33%) patients were treatment- and progression-free at ≥5 years
New
Belantamab or Bispecifics?
SCT +/- More induction
Lenalidomide
Bortezomib
Ixazomib
Lenalidomide + PI
Carfilzomib
Dara + Lenalidomide
Bortezomib
Lenalidomide
Carfilzomib
Pomalidomide
Selinexor
Panobinostat
Daratumumab
Ixazomib
Elotuzumab
Isatuximab
Idecabtagene autoleucel
Ciltacabtagene autoleucel
Teclistamab Talquetamab
Elranatamab Linvoseltamab
CAR T or Bispecifics?
Iberdomide, Belanatamab or Bispecifics?
Novel CAR T Cell Therapies
Bispecific/Trispecific Antibodies
Iberdomide and Mezigdomide
Venetoclax?
Belantamab soon?
Multiple small molecules ++++++++
https://seer.cancer.gov/statfacts/html/mulmy.html;
Monica Bryant, Esq. Chief Mission Officer, 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.
TriageCancer.org
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Quick Guides & Checklists
Animated Videos
State Resources & Chart of State Laws
Legal & Financial Navigation Program
Don’t
Health
You Are Not Alone.
Source: 2017 PolicyGenius Health Literacy Survey
• Premium: each month (fixed $ amount)
• 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):
Dan’s Plan: Deductible = $2,000
Co-insurance = 80/20 plan
OOP Max = $8,000
If Dan has a $102,000 hospital bill, what does he pay?
1. His deductible of $2,000
$102,000-$2,000 = $100,000 left
2. His co-insurance amount of 20%
20% of $100,000 = $20,000
But OOP max is $8,000. So, he would only pay the $2,000 deductible + $6,000 of the $20,000 co-insurance amount, for a total of $8,000.
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
$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
• 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?
• Employer plans: varies (often in the Fall)
• Medicaid: accepted year round
• Medicare: Oct. 15 – Dec. 7*
• Marketplace: Nov. 1 – Jan. 15*
• Enroll by Dec. 15 for coverage that starts Jan. 1
• Some states may have longer open enrollment periods:
• Jan. 23: MA
• Jan. 31: CA, DC, NJ, NY, RI
• ID is Oct. 15 - Dec. 16
*Plans are for a calendar year
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 through an employer
• Medicaid pays premium for group health insurance
• May have more doctors to choose from and other medical services may be covered through private insurance
• 31 states have this program, including: CA, GA, IA, IL, MA, PA, RI, TX, VA
“Four in five customers are able to find a plan for $10 or less a month.”
400% + (2024) $ help reduce monthly premiums to 8.5% of household income Will continue through 2025 under IRA
• $2,000 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 could increase over time
• Not guaranteed to be $2,000 indefinitely into the future
• 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
• Tiering exceptions vs formulary exceptions
• Request can be made by you, your representative, or your prescribing HCP
• Ask your HCP for a supporting statement that says why the drug is medically necessary for you
• Alternatives aren’t as effective, and/or
• Alternatives would cause adverse effects
TriageCancer.org/Checklist-MedicarePrescriptionRequest
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.
• 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 = $16,100 (individual), $32,130 (married)
• Pay no more than $4.90 for each generic/$12.15 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/pharmaceutical-assistance-program/state-programs.aspx
• 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
• 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
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!
• 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
• From your insurance company:
We have received a claim We are processing your claim Explanation of Benefits
• From your provider:
• The bill
• Doesn’t always happen in this order!
• Wait for the EOB before paying any bills
• Check for mistakes
• Keep track and communicate with providers
• Ask questions
• Appeal denials
Do you qualify for hospital 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
•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: works with other creditors, too!
TriageCancer.org/Worksheet-BillTracker
• 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?
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 and parking)
Your medical records
*Some of these may be tax-deductible!
Educational events for:
• Individuals diagnosed with cancer
• Caregivers
• Health care teams
• Advocates & others
Topics:
• Being an Advocate
• Health Insurance
• Finances
• Getting Organized
• Being Prepared
• Employment & Disability Insurance
October 18, 2025 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
“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
Upcoming Topics:
• October 9 ~ What Should I Know About Medicare? Part 1
• November 19 ~ What Should I Know About Medicare? Part 2
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
Joy Heimgartner, MS, RDN, CSO, CNSC, LD Mayo
Clinic, Rochester, MN
• To help patients and families appreciate nutrition goals across the continuum of MM care and learn practical strategies to help you live better with multiple myeloma
How dietitians think of care across the cancer continuum and how that is more complex in patients with MM
What are the most important nutrition concerns we have for patients with MM
The power of protein
The power of plants
• Continuum loop : prevention > active treatment > survivorship
Prevention & Survivorship
• Before diagnosis and after active treatment
• Similar nutrition recommendations
• Goal is to optimize long term health and reduce risk of other diseases or cancers
ActiveSurvivorshipTreatment Prevention
• Recommendations driven by treatment type and nutrition impact symptoms (NIS)
• Goal is to optimize the current body to withstand treatment and side effects to limit treatment interruptions, side effects and debility
may look very different during these phases… And that is normal and expected - but can be confusing for patients.
Prevention & Survivorship
• Before diagnosis and after active treatment
• Similar nutrition recommendations
• Goal is to optimize long term health and reduce risk of other diseases or cancers
Prevention
ActiveSurvivorshipTreatment
• Recommendations driven by treatment type and nutrition impact symptoms (NIS)
• Goal is to optimize the current body to withstand treatment and side effects to limit treatment interruptions, side effects and debility
Tolerating treatment
• Fewer unplanned treatment breaks, dose reductions
• Limit treatment side effects
Maintaining Maintaining physical functionality
• Improve energy levels
• Maintain lean muscle
Preventing longterm complications
• Protect heart health
• Optimize metabolic and endocrine health
• Bonus benefit: improve eligibility for future treatments
• Sarcopenia: loss of skeletal muscle mass, strength and function
• Age-related and disease-related
• Diminishes physical functioning
• Inhibits treatment tolerance
• Increases side effects
• Decreases quality of life
• https://youtu.be/pDSX_jaDCDM
Inadequate protein and/or calories
Rapid weight loss (for any reason)
Inflammation
Medications
Insulin resistance
Physical inactivity
• Quantity matters*
• 1.2 to 1.5 g/kg body weight daily – up to 2 g/kg/day
• 150 lb (68 kg) person: 81-102 g/day
• 200 lb (91 kg) person: 109-136 g/day
• Quality matters
• 65% animal sources during active treatment
• Timing matters
• 4 to 6 feedings per day
*patients with severe kidney impairment should talk to their medical team about if they need to limit protein intake
KL, Arends J, Atherton PJ, Engelen MPKJ, Gonçalves TJM, Laviano A, Lobo DN, Phillips SM, Ravasco P, Deutz NEP, Prado CM. The importance of protein sources to support muscle anabolism in cancer: An expert group opinion. Clin Nutr. 2022 Jan;41(1):192-201. doi: 10.1016/j.clnu.2021.11.032. Epub 2021 Nov 29. PMID: 34891022.
KL,
NEP,
CM. The importance of protein sources to support muscle anabolism in cancer: An expert group opinion. Clin Nutr. 2022 Jan;41(1):192-201. doi: 10.1016/j.clnu.2021.11.032. Epub 2021 Nov 29. PMID: 34891022.
• When nutrition impact symptoms (NIS) are well controlled, emphasize a plant-forward diet that meets calorie and protein needs
• Plant foods provide:
• Fiber
• Vitamins and minerals
• Phytonutrients
• Pre-biotic fibers to feed a healthy gut microbiome
• Volume for satisfying hunger
• NUTRIVENTION studies
• 5 to 9 servings of vegetables and fruits daily
• Other plant foods: whole grains, nuts, seeds, beans
• Structured “diets” that can work as a starting point
• Mediterranean Diet
• Mayo Clinic Diet
• Whole Food Plant Based Diet
• Start small
• Focus on consistency not grand plans - “What can I do even on my worst day?”
• Create a supportive environment
• Built environment
• Social environment
• Be patient
• Just like MM, your habit change will be something you work on for the rest of your life
• Make it part of your identity
• Instead of “I’m not a vegetable eater” try “I am a person trying to diversify my gut microbes”
• Embrace the 80/20 rule
• Make the healthy choices MOST of the time, and over time you will improve
• It’s not about perfection, it’s about persistence: “All or something”
Presentation Slides: Are available by scanning the QR code, Instructions are on the QR code handout on each table.
Program Evaluations: evaluations at the end of the program or on your way out.
Restrooms: Turn left exiting the meeting room and bathrooms are on your left before the lobby
Badge Holders: Please return your badge holders and we can recycle them
Wifi: Network – Marriott Bonvoy Conference, Password - patient104
Parking: Onsite parking in the South Lot is complimentary
We greatly appreciate your time and feedback!
Welcome & Announcements
Robin Tuohy, Vice President, Patient Support
International Myeloma Foundation
Understanding Clinical Trials
Joseph Mikhael, MD, MEd, FRCPC, FACP, FASCO, Chief Medical Officer, International Myeloma Foundation
Fireside Chat: What is the Future of Myeloma? With Q&A
Joseph Mikhael, MD, MEd, FRCPC, FACP, FASCO, Chief Medical Officer, International Myeloma Foundation
Benjamin Derman, MD University of Chicago, Chicago, IL
BREAK
Breakout Sessions #1: Treating Myeloma
Breakout A: Newly Diagnosed: Frontline Therapy
Craig Emmitt Cole, MD
Associate Professor, Karmanos Cancer Institute
Wayne State University/Michigan State University, Detroit/ Lansing,
Breakout B: Managing Relapsed Myeloma
Rahma Warsame, MD
Mayo Clinic, Rochester, MN
LUNCH
SATURDAY AFTERNOON
Advocacy Update: What you need to know
Danielle Doheny, Director of Public Policy and Advocacy International Myeloma Foundation
Symptom Management and Living Well with Myeloma Nurse Leadership Board of the IMF
Tiffany Richards, PhD, ANP-BC, AOCNP® University of Texas MD Anderson Cancer Center, Houston, TX
Closing the Gap: Health Disparities in Myeloma
Joseph Mikhael, MD, MEd, FRCPC, FACP, FASCO, Chief Medical Officer, International Myeloma Foundation
Breakout Sessions #2: Patients and Care Partners
Breakout A: Patients Only – Lessons Learned Michael Tuohy, 25-year Myeloma Patient, Support Group Leader
Breakout B: Care Partners Only
Robin Tuohy, Vice President - Patient Support International Myeloma Foundation & 25-year care partner
RETURN TO MAIN SESSION
Grab-and-Go Refreshments
Controversies in Myeloma: Moderated by Dr. Joseph Mikhael With Craig Emmitt Cole, MD, Benjamin Derman, MD, Rahma Warsame, MD
Ask – the – Experts w/ Guest Faculty
Closing Remarks & Evaluation
Living Well With Myeloma - Webinar
October 15, 2025
Regional Community Workshops
November 15, 2025 – Raleigh RCW – Sheraton Raleigh Hotel
Online Community Workshops
November 17, 2025
Patient and Family Seminars
March 13 - 14, 2026 – Boca Raton PFS – Marriott Boca
Raton at Boca Center
Thank you to our sponsors!
5:00 – 7:00 PM Welcome Reception
Please return to this ballroom
OUR VISION:
A world where every myeloma patient can live life to the fullest, unburdened by the disease.
OUR MISSION:
Improving the quality of life of myeloma patients while working toward prevention and a cure.
These are the core values we bring to accomplishing our mission each day.
The patient experience is the focus of everything we do. Every interaction is an opportunity to establish a personal connection built on care and compassion which is the basis for continued support.
As a team, we value honesty and transparency while creating a culture of mutual respect. We foster a myeloma community built on sincerity, authenticity, and kindness.
We value accountability, personal responsibility, and a steadfast commitment to excellence. We respect the legacy and reputation of our organization while seeking new solutions and advancements to improve outcomes, quality of life, and access to the best available resources for everyone impacted by myeloma.
We recognize each team member's skills and talents through collaboration and cooperation. Our programs aim to celebrate and support the diversity of our patients and their communities.
