The International Myeloma Foundation continues 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 Rae Moody, a myeloma patient “advocating from the myeloma and Patient Rising communities for affordable and equitable health care,” states Rae's Facebook page. Through her “involvement with the International Myeloma Foundation and Patients Rising, she has met more than a few fine people who feel overwhelmed by their financial responsibilities and the complexity of the system,” and believes that there is an urgent need to fix issues in Medicare for myeloma patients. Here is Rae’s story. 

People with chronic and rare diseases often rapidly sail past their health plan deductible and reach maximum Out-Of-Pocket (OOP) expenses within the first few months of the plans’ annual renewal.  

This happens year after year depleting precious financial resources many are not able to replenish because of ill health, caregiving responsibilities and fixed incomes. 

Through my involvement with the International Myeloma Foundation and Patients Rising community, I have met more than a few fine people who feel overwhelmed by their financial responsibilities and the complexity of the system.  

It is no wonder that exorbitant medical bills account for 40% of personal bankruptcies and are the leading cause of filings in the US. While a silver bullet to solve this issue remains elusive, I have discovered an opportunity to fix one problem that would allow welcome financial relief and correct an issue related to fairness. 

In 2024, at age 65, I qualified for Medicare and duly signed up with my plan set to start on May 1st. 

Because of regular laboratory tests and expensive medication of $17,000 every 28 days, I anticipated meeting my marketplace insurance maximum OOP expenses, of $8,700, by the end of April.  

Then, in May, I would get the opportunity to do it all over again by meeting the Medicare Part B Deductible of $240 and the Part D maximum OOP expenses of $8,000, taking me to the Catastrophic Coverage phase. All for standard care to monitor and maintain my multiple myeloma remission. 

As it happened, the silver lining from a bout of pneumonia at the beginning of the year, resulted in taking a break from Revlimid, the expensive drug used for maintaining remission.  

A dispute over reimbursement between my insurer and our rural healthcare facility eventually resulted in forgiveness of some pending bills. Once on Medicare, my first prescription was covered, in part, by a foundation grant then the manufacturer chipped in 70%, due to one-time legislation for 2024.  

This year, after all the concern, I ended up paying about one quarter of my potential financial liability. Through a stroke of luck, the kindness of others, and an obscure piece of legislation, I came through relatively unscathed. 

How is it that people transferring to Medicare are exposed to serious financial jeopardy twice in one year?  

A simple solution to this unfair practice would be for new Medicare enrollees to get credit for payments already made to their previous health insurer in the year of Medicare enrollment.  

Insurers are already alerted when patients make this change. Automatic reporting by insurers directly to Medicare by sharing Explanation of Benefit statements (EOBs) would be one way of achieving this and creating parity with marketplace healthcare plans.  

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.     

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.