As a registered nurse, I knew to go to the hospital when I started experiencing severe chest pain. After routine blood work, my doctor called and advised me to immediately see an oncologist. I was told I had Myelodysplastic Syndrome (MDS), a type of cancer that prevents the body from forming healthy blood cells.
Doctors at the University of Maryland initiated a treatment plan that included chemotherapy. Unfortunately, it soon became clear from my blood counts that chemotherapy would not cure my cancer. As I struggled with the side effects of various medications and treatments, I made the choice to go on disability leave just 15 months shy of my retirement date.
For years, the standard of care for MDS patients has been chemotherapy or supportive therapy like blood transfusions, which help temporarily alleviate symptoms and treat infections that often occur. Today, however, patients with MDS have another option: Over the past decade, bone marrow transplants have offered the only hope for a cure. This option can save a life, but it remains frustratingly unavailable for many Medicare patients because of outdated policies that keep such treatments out of reach.
I am among the lucky patients whose lives were saved thanks to a successful bone marrow transplant. After finding a perfect 10 out of 10 match though the National Marrow Donor Program's "Be the Match" registry, I received cells from an anonymous donor that cured my cancer when other therapies could not. Although my experience has a happy ending, it underscores the challenges many patients face in accessing the right care and this life-saving treatment.
When I began receiving early retirement disability benefits, I became a Medicare beneficiary, and this coverage served as my primary insurance. But unlike my private insurance, Medicare would not cover the full costs of a bone marrow transplant. Fortunately, my secondary, private insurance stepped in and covered the life-saving transplant procedure for me, but it came with a confusing process that was difficult to navigate and consumed a great deal of energy during a time when I should have been focusing my full attention on my health and recovery.
I learned that for Medicare beneficiaries without any private, secondary insurance, the outlook is even more distressing. Many transplant centers today are reluctant to accept Medicare patients because the costs of the transplant are not fully reimbursed.
Although the total number of Medicare beneficiaries requiring a bone marrow transplant is relatively small — approximately 1,050 transplants were performed for patients over age 64 last year — the individual impact is enormous. Bone marrow transplants remain the only curative option for blood cancers, allowing patients survival and quality of life. For me, it was the only remaining chance, and I am thankful I was able to receive this life-saving treatment. I am concerned for Medicare beneficiaries and the obstacles they may have to face without secondary insurance.
My life is great and bursting with optimism now, and I have a lot to be grateful for. I am two years post-transplant, and doctors consider me cured of MDS. Although I continue to struggle with the common side effects associated with transplant medications, my life has returned to normal. I am even considering returning to work.
With the availability of life-saving treatments comes a responsibility that those treatments be accessible to patients who need them most, regardless of their age or the type of insurance they have. It's time for Medicare to re-evaluate its reimbursement policies surrounding bone marrow transplants for blood cancers so that my journey can be shared by thousands of others who suffer from otherwise incurable cancers.
Cindy Sargeant is a patient advocate and cancer survivor from Woodbine; her email is firstname.lastname@example.org.