Multiple Myeloma Patients Need Myeloma Specialists on their Team
Alicia
State: Virginia
Congressional District:
Diseases
Cancer
Issues and Challenges
Alicia has encountered: Access to Expert Providers
My Story
Multiple Myeloma Patients need Myeloma Specialist on their team
My Patient Story
In 2017 a routine blood test indicated abnormalities that resulted in a referral to a Hematologist. Upon arriving at the appointment, I realized that I was in an Oncology office. Panic set in. I had survived breast cancer 14 years earlier, having gone through the whole process including surgeries, chemotherapy and 5 years of drug therapy. An oncology office for another potential cancer was NOT where I expected to be. After further testing, it was confirmed that I had "smoldering" Multiple Myeloma.
Multiple Myeloma is a blood disease that impacts the bone marrow and the immune system. Unlike breast cancer, Myeloma is incurable. I was looking at the "potential" of indefinite cancer treatment and unknown life expectancy. Smoldering means that there is enough abnormal cell activity to lead physicians to believe that I may develop full blown Multiple Myeloma. If and when was unknown. I would be watched closely by my Oncologist from that day forward.
I remember visiting my breast cancer NP and telling her my news. She responded with a statement that has resonated with me to this day. She said: " Honey, we ALL have something smoldering. The difference is that you know what is smoldering in you" I decided there and then that I would commit to live my best life with grace and a positive attitude. I didn’t know then that I would become an inspiration to many of my friends and family.
Fast forward to 2024-During one of my doctor visits, I mentioned a relatively small but persistent pain in my back rib. At first the NP and I assumed it was due to my weight training. My doctor ordered a Petscan as a precaution. Results showed a small lesion the size of a nickel. The Myeloma had arrived.
In some ways, my “live my best life” approach to my smoldering Myeloma was liberating and gave me 7 great years. On the other hand, I was not doing my due diligence. I was not keeping up with Myeloma advances. By the time my lesion appeared and I had my 2nd bone marrow biopsy, my Myeloma had become High Risk due to chromosome abnormalities that had developed since my first biopsy in 2017. This had a significant impact on my body’s response to treatment. My doctors kept adding therapies but the myeloma was stubborn and the numbers went down at an extremely very slow rate. I needed the help of a Myeloma specialist.
Myeloma patients in general and especially High Risk Myeloma patients need a specialist on their care team. A specialist who only treats Myeloma patients is much closer to treatment advances (and there are many). I began researching and found a specialist at Sloan Kettering who seemed to have a special interest in high risk disease. He agreed to see me. I began the intake process through SK and several weeks later, I was told that my insurance had denied coverage. I was covered by the Virginia Marketplace health insurance. This, like many state run programs that came out of the National Marketplace program, only covered in-state doctors. There are no Myeloma specialists in the state of Virginia. Surely, there were exceptions to this rule? After several months of appeals, the answer was the same. No doctors outside of the state of Virginia would be covered despite my situation. I was shocked and frightened.
After speaking with family members, I decided that my health and long term survival was worth the out of pocket cost. I sought out a specialist in a nearby state who’s rates were more affordable. By affordable, I mean the 1-hour doctor visit, flight and hotel totaled more than $2500. The visit to Sloan Kettering would have cost double that price. The doctor was very informative and had a clear recommendation to move forward immediately with a Stem Cell Transplant. Despite previous plans to continue with the high dose therapy, my local Oncologist accepted the recommendation, and the transplant process began. Since I could not afford to continue paying for in-person visits and insurance did not allow virtual visits with out of state doctors, the specialist was only available to review my results and respond via email. I needed a specialist who was a long-term, integral part of my care team.
My transplant was only partially successful. I am not in remission as we had hoped. I continued with 3 additional months of high dose therapy before beginning maintenance therapy. The Myeloma is still prevalent in my system and I fear an early relapse. I am once again in search of a Specialist. At least I am now on Medicare which opens the door to many Specialists around the country.
I was fortunate to have the support of my family and the means to pay out of pocket for the Specialist who pushed for transplant. But someone with Myeloma, especially High-Risk Myeloma needs a specialist on their care team. For many patients, this is a big challenge with insurance coverage. Even the option of telehealth has been removed in many states. We need a system that considers the individual needs of the patient and is flexible enough to allow exceptions when warranted.
I hope one day we will have such a healthcare system.
My Motivation and Inspiration
Multiple Myeloma patients require a specialist on their care team. This is especially critical to the survival of patients with High Risk Multiple Myeloma. Barriers in our healthcare system make this difficult if not impossible.
Share This Story
Get the most from every Story
Find A Compelling Patient Story
Share it on social media.
Share Your Story On Our Network
Share your insights, challenges and what keeps you going.