With Myeloma Action Month (MAM) taking place this March, the International Myeloma Foundation is excited to share this collection of patient and care partner 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. If you have questions or inquiries, or would like to sign up for future LAMC summer and fall courses, please email Michael Riotto at [email protected] (mailto:[email protected]).)  

This week’s blog was written by Sheri Baker—a support group leader, patient advocate, and 13-year myeloma patient from Idaho, who was diagnosed with multiple myeloma at age 49. Seeing a glaring need for patient education and support, and having faced issues and challenges herself, Sheri shares her myeloma journey. Here is her story. 
 
In October 2011, I thought I was a healthy person. I was 49, married to my high school sweetheart, had 3 kids and I was working from home as a bookkeeper.  
 
That month I had a physical with my doctor, who did routine blood work. My doctor called and said that my kidneys were only functioning at 8% and I was told to go the hospital immediately. That was quite a shock!  
 
After a kidney ultrasound and a kidney biopsy, the nephrologist called and asked us to meet him at his office at 7pm that night. We knew that could not be good. He told us I had an incurable disease and that I would be on dialysis for the rest of my life. He told us to go home and get our house in order.  
 
A few weeks later, a bone marrow biopsy confirmed that I had multiple myeloma, an incurable blood cancer that I had never heard of, which had caused my kidney failure. At that time, the prognosis was 3-5 years. I was determined to prove them all wrong.  
 
I began dialysis and chemo treatments and responded well. I was in the hospital for 17 nights for a stem cell transplant, which also went well. I was maintenance-drug free for 2 years. And during that time, my kidney function slowly improved.  
 
So, after 2 years of doing dialysis, every night at home, I was able to stop. But, like multiple myeloma usually does, it returned, and in April of 2014, I started treatment again. I was on that treatment for 6 years. When I relapsed again in July of 2020, I began another treatment.  
 
Four and a half years later, the myeloma is possibly on the rise again, and I will consult with my doctors for the next best treatment for me.  
 
During this time, I noticed that there was a lack of myeloma specific education and support available where I live, and the myeloma world was rapidly changing with new treatment options.  
 
Seeing a need to educate patients like me, I started a Multiple Myeloma support group In September 2017. Because of my involvement with the support group, I became a patient advocate. I love helping others and my involvement with various myeloma groups is my way of giving back.  

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] (mailto:[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. (https://www.patientsrising.org/)