5 Key Steps for the Multiple Myeloma Patient
Diseases
Cancer
Issues and Challenges
Todd has encountered: Access to Expert Providers, Access to Medicine, Copay Issues, Rare / Underserved Disease, Caregiving, Invisible Illness, Oral Parity, Prior Authorization, Step-Therapy / Fail First
My Story
I believe that hope and action can lead to a long and healthy life with multiple myeloma! I have been married for 35 years and have raised my two sons, built deep friendships, and loved life in Orange County, CA for over 25 years. Despite living a healthy O.C. lifestyle, on the day after Christmas 2017, at age 52, I unexpectedly heard those dreaded words, “You have cancer, and it is currently considered incurable”. Thanks to the personalized, ongoing, expert care I receive at City of Hope, an NCI designated comprehensive cancer center, my multiple myeloma thankfully remains in remission and my family and I continue to live life to the fullest. I recognize that all patients do not have equitable access, and we need to advocate for ourselves and others that are unable or unwilling to do so.
In January 2020, I "retired" from a 30+ year career in the pharmaceutical industry to "give back" by refocusing my time and talents on patient and research advocacy. I believe that myeloma patients have justifiable reasons for abundant hope! We are blessed to benefit from rapidly advancing scientific breakthroughs that have led to new treatment options, precision diagnostics and supportive care. I respectfully suggest, however, that hope is not enough.
As patients, we must take personal action to turn hope into reality for ourselves and the myeloma community.
These key action steps include:
- becoming informed on the basics of myeloma and your specific case;
- including a true myeloma specialist on your team;
- getting connected to the myeloma community;
- actively participating in shared decision making regarding your personalized treatment plan; and
- engaging in legislative advocacy when necessary.
When I was diagnosed in 2017, I was overwhelmed on many levels. I was relieved, however, to discover that the myeloma community of patients, care partners, clinicians, researchers and supporters is very tight. We support one another and we give back in appreciation of the love, care, and support we have received. Wishing silver linings, wonderful blessings, excellent health, and great joy to those living with and impacted by cancer.
My Motivation and Inspiration
Although multiple myeloma is currently considered "incurable", I am justifiably optimistic that cures will be discovered in my lifetime based on the significant and accelerated pace of myeloma research. To turn that hope into reality however, we need to ensure that patients advocate for themselves as well as ongoing investments in cancer research.
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