Patient, President & CEO Address
Yelak Biru President and CEO
Yelak Biru President and CEO
28 Years Myeloma Patient International Myeloma Foundation
Los Angeles, CA
The IMF is dedicated to improving the quality of life of myeloma patients while working toward prevention and a cure.
Origin Story
Brian Novis
Susie Durie Brian G.M. Durie, MD
In
1995 Yelak was Diagnosed with Multiple Myeloma
A day in the life of a myeloma patient
Diagnosed with myeloma at age 25 in 1995
Given 2-3 years to live
Told I will be dead before the age of 30
28 Years ago!
January 29, 2021
MRI reveals cancerous lesions of unknown origin in spine
Unclear if I have 3 months, 1 year, 5 years
Body, mind and soul in turmoil!
In 2021 Poornima was Diagnosed with Multiple Myeloma
January 29, 2021
MRI reveals cancerous lesions of unknown origin in spine
Unclear if I have 3 months, 1 year, 5 years
Body, mind and soul in turmoil!
• This can't be happening to me.
• What will the future hold? How will this progress?
• Will treatment be painful? Will I be able to handle the side effects?
• How long do I have? What will my final days be like?
• Even after treatment, the fear of the cancer coming back can be very real.
• No one understands what I'm going through."
• What is myeloma? What stage is it?
• What are my treatment options?
• What are the side effects of treatment? Would it be painful?
• What is my prognosis?
• Can myeloma be cured?
• Will I be able to work and live a normal life?
• How will this affect my family?
• Are there clinical trials I can participate in?
• What resources are available to help me cope with this disease?
• What kind of doctor should I see?
• What tests do I need to have done?
• How will I pay for treatment?
• What kind of support groups are available?
• How do I talk to my family and friends about my diagnosis? She had many question!
President and CEO Board of Directors Member
A powerful purpose drives us:
Myeloma can be a relentless opponent!
To empower patients with myeloma and their loved ones.
To fight alongside you every step of the way.
A world where every myeloma patient can live life to the fullest, unburdened by the disease.
Improving the quality of life of myeloma patients while working toward prevention and a cure!
Guiding Principles
Examine the why of all our actions to ensure they are purpose-driven, meaningful, and effective.
Broaden our Reach
Address unmet patient needs by expanding our reach to diverse & underserved populations in everything we do.
Innovate Every Step of The Way Raise the Bar
Provide those who need it most with what they need the most, throughout their myeloma journeys.
Our Four Pillars
IMF’S CONTRIBUTION & INFLUENCE ON MYELOMA RESEARCH
IMWG Guidelines & Research | Global Researcher Pipeline | Global Clinical Trials | BSRI – from MRD to CURE
Bone Disease & Imaging Guideline
• Bone Diseases Treatment Recommendation
• Vertebroplasty and Kyphoplasty Guidelines
• Pet/CT | MRI | WBLDCT
• MRD Definition
• Tissue Bank MRD (A BSRI Project)
• Flow Cytometry | MASSSPEC | LIQUID BIOPSY 10-8 Sensitivity
• MRD Surrogate End Point to OS and Clinical Trials i2 Team
An IMWG Project
• Immunotherapy Database
Other
• Plasma Cell Leukemia
• Infection Management
2024 U.S. Advocacy Priorities Snapshot
1. ENSURE ACCESS TO CARE
INSURANC E REFORM: DRUG ACCESS
2. ELIMINATE FINANCIAL BARRIERS
3. SECURE RESEARCH FUNDING Step Therapy Protocols Safe Step Act
H.R. 2630 / S. 652
INSURANC E REFORM: DRUG ACCESS PBM Reform PBM Reform Act
H.R. 5378 / S. 1339
MEDICARE REFORM:
PHYSICIAN ACCESS
Tele-Health/Medicine
Telehealth Modern. Act
H.R. 7623 / S. 2016
INSURANC E REFORM: COINSURANCE MEDICARE REFORM: ANNUAL COST LIMITS
Annual Appropriations
INSURANC E REFORM: COPAYS Copay Accumulators HELP Copays Act H.R. 830 / S. 1375 Oral Parity Cancer Drug Parity Act H.R. 6301 / S. 2039
FEDERAL FUNDING ANNUAL APPROPS Inflation Reduction Act implementation Cap & Smoothing (MPPP), Drug Pricing
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.
CLINICAL TRIAL DIVERSITY
Focus on underserved, POC, rural settings and socioeconomically disadvantaged groups
Is it Enough?
The IMF has made incredible strides in empowering patients. Imagine a newly diagnosed patient, overwhelmed and scared.
• Clear, concise information and Education
• Support groups
• We advocate on your behalf.
• We do and conduct research. These are vital steps, but…
The answer is a resounding Yes, but we need to do MORE!
Strategic Priorities
More
Should Be Done, and Here’s How the IMF Plays a Role
• We envision a future where patients can thrive, not just survive.
• Myeloma shouldn't dictate your quality of life.
• You shouldn't have to choose between effective treatment and debilitating side effects.
• C U R E
Strategic Priorities
1. Initiate and run a concierge service for myeloma patients (and community oncologists)
1. Reduce Time to Hope
2. Personalized and customized warm blanket
3. Lifelong partnership
2. Meaningfully collect the patient's voice to generate Real-World Evidence and inform research, policy, and care.
1. IMF has unprecedented access to the patient and patient voice. We aim to reach 90% of the patients in 90 days, including ways to reach patients at scale at diagnosis.
2. Collect the patient's voice meaningfully to generate Real World Evidence and inform research and policy.
3. The question is the answer
1. What are the unmet research needs we can ask and accelerate through
2. Large-scale funding of the top 1-3 research questions
3. Formation of a US Myeloma Clinical Trial Network
First time ever non-founder President and CEO
New set of Board of Directors Collaborative research through the Scientific Advisory Board
don’t forget to live!
