With Myeloma Action Month (MAM) taking place this March, the International Myeloma Foundation is excited to share this collection of patient stories from those who have completed the first course of the Legislative Advocacy Master Class (LAMC). The IMF hopes that these unique and compelling stories will help raise awareness about the disease, inspire action, and make an impact in changing healthcare laws and policies for the betterment of the myeloma community. 

(EDITOR’S NOTE: The Legislative Advocacy Master Class is a 10-week immersive advocacy training course, and a combined collaboration between the International Myeloma Foundation and Patients Rising—"a leading grassroots patient advocacy organization seeking comprehensive policy solutions that puts the patient experience at the forefront of addressing America’s biggest healthcare challenges.” The stories in this blog series were taken from the now-completed first class, where participants submitted their stories as final projects to graduate from the course. The LAMC is an ongoing effort to train advocates for the IMF to tell their stories, write a letter to Congress, and make an impact in changing healthcare laws and policies. A second class will begin on the first week of March 2025. More details for upcoming LAMC classes will become available soon. If you have questions or inquiries, or would like to sign up for the LAMC, please email Michael Riotto at [email protected].) 

Diane Hunter: My Journey with Multiple Myeloma and Advocacy

This week’s blog was written by Diane Hunter, an 8-year myeloma patient who shares her myeloma journey: from symptoms, to diagnosis, to treatment, to her experiences with disparities in healthcare. Fortunately, after five months of treatment, Diane has been in remission since July 2017. Here is her story.   
 
I was diagnosed with multiple myeloma (MM) in January 2017.  I had not heard of it. I was devastated.  I remained as calm as I could.  In my quiet time, I encouraged myself by saying, “I have MM, it does not have me.”  
  
I was suffering from fatigue, anemia and other MM symptoms. I had to stop managing a local senior center. I was unable to do most things for myself except shower.  I love to cook and when I stopped cooking and was barely eating, I knew I was in trouble. For the first time in my adult life, I had to rely on others to care for me.  
  
My nine-month journey to diagnosis began with my Primary Care Physician (PCP) being dismissive about lab report results provided to him indicating protein in my blood, and a suggestion that he refer me to a hematologist.   
 
His response was that it was not enough to be concerned about.  Two visits to Urgent Care and treatment resulted in temporary relief from back pain.  My PCP ignoring my multiple requests for a referral to get an MRI led to my pursuit of treatment by a chiropractor— that secured an MRI the same day of my one office visit.   
 
The confirmation of multiple compression fractures in my vertebrae led me to an orthopedic surgeon who put me in a back brace and referred me to an osteoporosis clinic.  Lab test results for the clinic reflected too much calcium in my blood and I was rushed to the hospital to address this issue.   
 
After a seven-day hospital stay, a bone marrow biopsy confirmed that I had MM. More than 90% of my bone marrow was cancerous.  Unfortunately, I was facing a five-year life expectancy.    
  
I experienced the reality of disparity in health care treatment for the elderly and Blacks, who are often marginalized.  It is important that patients and their caregivers understand that if the doctor ignores their concerns, they should not hesitate to get another opinion.   
 
After five months of immunotherapy and a successful stem cell transplant, I have been in remission since July 2017.  My cancer journey has caused my purpose to evolve.  The opportunities I am experiencing and the wonderful people I am meeting are enriching me and others.  My life is good because of my cancer experience life transformation.  
  
The lack of awareness of MM, and the rapid evolution of medications and treatment options are the reasons why I became a myeloma support group co-leader and patient advocate.   
 
At the time of my diagnosis, my daughter told me that cancer was not a death sentence.  She was right. I have met people that have been living with MM for up to about 30 years.  Patient quality of life keeps getting better and better.  The word “cure” is now being heard in talks about a cancer that was said to be incurable. MM patients can be hopeful.    
  
Everyone’s cancer journey is different.  Every patient and caregiver are important and empowered by their experience.  Share your experiences and never cease to give your gift of encouragement to others.  What you say matters.    
     

About the Advocacy Master Class 
At Patients Rising, we believe that patients and caregivers hold the power to move the needle in healthcare and create a better tomorrow for all patients and caregivers by raising their voice! That is why we offer our Advocacy Master Class in collaboration with the International Myeloma Foundation (IMF). The master class is designed to train patients, caregivers, and citizens in the art of healthcare advocacy.  
  
What is the course all about?  
This 10-week, immersive experience will teach participants about advocacy on and off ‘the hill’ and provide them with the tools and tactics they need to be an effective healthcare advocate.  
 
Designed as a mini-college course, students will receive a curriculum with weekly reading, watching, and listening to be completed each week at their own pace. Course participants will come together for live virtual sessions to engage with fellow classmates and hear from leading advocates.  
 
Who can participate?  
Patients and caregivers. U.S. based patients, caregivers, and citizens passionate about advocating for better healthcare are the target audience, though learning is designed to be accessible to anyone.  
 
All students will have the opportunity to interact and engage with peers and advisors on our custom platform.  The master class platform is built to give students the opportunity to interact and engage with peers and advisors, and to learn from one another.  
 
Why should I apply?  

• Upon the completion of this course, participants will be able to:  
• Communicate their patient/caregiver story in a compelling manner to different audiences  
• Tie personal experiences to healthcare policies they want fixed  
• Understand key healthcare legislation and how it impacts patients, and what they can do to help ensure it gets passed  
• Effectively advocate “on the hill” by leveraging meetings with their representatives and using the power of social media to affect change  
• Effectively advocate “off the hill” – From testifying for the FDA approval of a new therapy or speaking at an ICER or DUR meeting to push for equitable access to a therapy  
• Create and be able to share their own personal webpage on the Patients Rising Stories platform, where they can tell their whole story with text, images, and links to their support organizations and social media.  

 
This course is a truly comprehensive way to learn how participants can raise their voice and create a better tomorrow for all patients and caregivers.  The IMF, in collaboration with Patient Rising, is spearheading the Advocacy Master Class. For more information on the Advocacy Master Class, email Michael Riotto at [email protected]. 
 

About Patients Rising 
Patient Rising’s mission is “empowering every patient in America to advocate for reforms placing them, alongside their doctors, in control of their healthcare choices” with a bold vision: “Healthcare is personal. By partnering with patients, we envision a future where every individual has healthcare options that align with their unique needs and circumstances.” To know more about the advocacy organization, visit PatientsRising.org.