A Myeloma Patient with a Mission: Coaching and 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 Richard Armstrong, a 3-year myeloma patient who is aligned with the Philadelphia Multiple Myeloma Networking Group, HealthTree.org, and the Leukemia and Lymphoma Society. Richard was diagnosed with multiple myeloma in May 2021, during the COVID-19 pandemic. He recounts the struggles and challenges he had to go through, before reaching remission, and how his myeloma journey has inspired him to live a life committed to coaching and advocacy. Here is his story.
My name is Richard Armstrong.
In May 2021, I almost lost my life to kidney failure after a very late diagnosis of multiple myeloma.
It was at the height of the Covid pandemic when I had begun to feel poorly.
Over the course of a few months, I'd increasingly felt symptoms of spinal pain, shortness of breath, and the inability to hold urine.
The combination of my difficulty getting an appointment, overflowing hospital ERs, and my concern for contracting Covid created a long delay in obtaining care.
Eventually, the pain progressed to a level where I did not want to live, but I was finally able to get an appointment at a clinic specializing in pain treatment.
Unfortunately, imaging revealed serious lesions throughout my spine, hips, and skull, such as to suggest metastatic cancer.
More imaging and blood testing were ordered.
After having my blood drawn and while literally driving to obtain additional imaging to determine the nature of my cancer, I received a frantic call from my primary to go directly to an emergency room.
It turns out that I was in acute kidney failure.
After a day and a half in the ER triage room, it was determined that I had multiple myeloma, which caused my kidney failure, spinal lesions, and severe anemia.
I was in a very critical condition and faced a fight for my life.
The ER staff was able to treat me and to save my life and kidneys — all while juggling a department full of Covid patients and other emergencies.
Because of so many Covid patients, it took another day for a hospital bed to become available, but ultimately, I was very fortunate to have world-class, effectively targeted kidney and myeloma stabilizing treatment over the course of eight days, so to have hope.
At diagnosis, I had less than 9% kidney functioning and Kappa Light chains of over 43,000. A normal level is between 3 and 19.
I was able to reach myeloma remission levels after being treated with a five-drug induction therapy and an autologous stem cell transplant.
Additionally, I had spinal injections and spine surgery in the months post diagnosis to overcome horrible pain.
Only from excellent, expert and specialist treatment, care from loving family, support from friends, plus inspiration and guidance from fantastic coaches, am I blessed to enjoy a miraculously comfortable, productive, fulfilling life and days.
In addition to spending my final chapter in life making memories with family and friends, I'm committed to the missions of coaching and advocacy.
I'm proud to be aligned with my local Phila myeloma support group, HealthTree.org, the Leukemia and Lymphoma Society, and I'm looking forward to becoming increasingly active in Patient Circle advocacy efforts.
I share my story and work for advocacy to help facilitate information, support, and logistics for people who need health advocacy.
I pray that my efforts help provide hope, encouragement, healing, and the inspiration for others to overcome their challenges and live optimally well, happy, fulfilling days.
My main areas of focus are:
1) To influence early health diagnosis, healing interventions, and treatment among the global public by emphasizing the need for individuals to schedule annual physicals with bloodwork, plus to practice health proactivity.
2) To encourage, educate, coach, and support myeloma patients along with caregivers to seek specialist care and help direct them towards the best facilities and resources.
3) To advocate for and help facilitate equitable treatment access and affordability.
The circumstance of late diagnosis is inefficient for the patient, for the therapist, and for the additional treatment dollars spent on resolving co-morbidities.
Myeloma is notably odious in this regard.
Unfortunately, in the vast majority of cases, it is still being diagnosed and treated at a late stage—after chronic damage, necessitating chronic treatment, and with diagnosis still often being missed.
There are, fortunately, many brilliant, dedicated minds focused on and making amazing progress towards solving this disease on many levels and from multiple perspectives.
However, in my honest opinion, there is an important big picture perspective and coordination missing.
At this point in the battle against the disease, there are questions that must ultimately be addressed and collectively solved by the research and medical communities.
How do we implement a system for the routine early diagnosis of myeloma, with "early" being defined as before incurring a symptomatic, chronic damage stage?
Furthermore, when, what, and how to apply therapies most effectively and economically on both micro (per patient), but also macro levels to reduce overall spending on treating this disease.
Coordinating these answers to increase patient diagnosis, treatment, quality of life, and survival using precious resources—including dollars most efficiently.
Thank you for taking the time to read.
My Motivation and Inspiration
I offer free coaching support* and would like to share my story more extensively through this interview, where I discuss my life-saving treatment.
*Please note that The International Myeloma Foundation does not endorse Richard Amrstrong's free coaching services. Individuals may choose to reach out to Richard at their own discretion, understanding that his services are independent of the foundation.
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.
