Diane Kennedy: A Care Partner's Journey and Passion for Advocacy

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].)  
 
This week’s blog was written by Diane Kennedy, a 7-year care partner to her husband of 35 years, who was diagnosed in December 2017 but is currently in remission. Here is Diane’s story. 
  


On the day after Christmas 2017, my husband of now 35 years was diagnosed with cancer.  
 
Let’s just say, that was one “gift” we really wanted to return! The news came completely out of the blue. He wasn’t sick, in fact, he was in the best shape of his adult life. His only health complaint was some back pain that was managed with occasional steroid injections.  
 
An MRI that was supposed to show the doctor the best spot to inject steroids, instead revealed he had cancerous lesions up and down his spine and a tumor on his hip.  
 
There is never a good time to be told, “you have cancer” -- BUT, the week between Christmas and New Year’s, when pretty much every doctor’s office is closed, must be about the worst!  
 
Over the course of the next few days, it was determined that he had multiple myeloma, a rare and currently incurable form of blood cancer. That is when we went to work because we knew his life depended on it.  
 
Sadly, this was not our first introduction to cancer.  
 
In 2003, my mom was diagnosed with breast cancer, and I learned through being her care partner the importance of second opinions, and the value of having an expert in your specific cancer on your care team. We credit the coordination between her expert at a top research NCI-designated center and her local oncologist with keeping her alive and still cancer free today, 21 years later.  
 
Following my mom’s diagnosis “our” cancer journey continued with three close friends, all in their early 40s, diagnosed with different aggressive, Stage IV cancers – pancreatic, stomach, and appendix.  
 
Based on my background with my mom, they reached out to me for guidance, and I helped them find specialist care in their specific diseases. Two of the three went to experts at top research-based cancer centers – and lived far beyond expectations. One opted to stay with her local general oncologist to not cause added burden to her family. By the time she conceded she needed a specialist, it was too late, and she died weeks later.  
 
We were still reeling from the deaths of our friends when my husband was diagnosed. We vowed to not let their deaths be in vain, and to use everything we learned from their journeys to help keep him alive. We found a top myeloma specialist at an expert center 60 miles from our house, and over the first two years made over 100 trips (typically two hours each way) to that center. We considered ourselves lucky – we had a top cancer center within driving distance from our house, we had excellent insurance, we had the resources and career positions to allow us the time necessary to make these trips.  
 
Seven years later, my husband remains in remission, and we credit our access to excellent healthcare as the primary reason for this. We are passionate about making sure all myeloma patients have this access. We understand that for some this means access to telehealth outside of their state. The difference between living with or dying from cancer should not be based on your zip code.  
 
There are many more stories from our cancer journey that I could share, the importance of getting connected with others battling your disease and getting educated in order to best advocate for your care among them; but access to a specialist is fundamental and the message that speaks loudest from the graves of my beloved friends.  
 

My Motivation and Inspiration  

My unwavering motivation is to use the lessons learned from my three friends, Mitch, Greg, and Kristyn, who died far too young from cancer. They are the "wind beneath my wings." It is my mission to be their voice from beyond the grave and advocate for access to specialist care for all rare disease patients.  
 
My husband and our family (two now-adult sons and my daughter-in-love) are also my motivation. Keeping him alive, LIVING life to its fullest, enjoying time together as a family, traveling, and helping other patients and their families do the same—these are the reasons behind my passion-filled purpose.  

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.