Multiple Myeloma Care Survivorship: The Need for Improvement

Cancer is a physically detrimental disease, but it’s effects can lead to emotional, psychological, economic, social, or spiritual difficulties as well. This creates an overall battle that cannot be won independently. All of these needs—physical, emotional, psychological, economic, social or spiritual—must be met. To isolate and address these needs, the National Comprehensive Cancer Network (NCCN) conducted an environmental scan of the aspects of survivorship cancer care. In the survey, multiple myeloma patient Yelak Biru shared his experience.

Yelak Biru was diagnosed with multiple myeloma at 25 years old and has been a cancer survivor for over 22 years. At the NCCN Patient Advocacy Summit in December of 2017, Biru highlighted several issues he faced as a survivor, “most of which rely on the ability of survivors and providers to adequately address and manage chronic physical and psychosocial effects. To address the growing number of cancer survivors, Mr. Biru emphasized that the oncology community must come together to address the complexities of survivorship care and help this growing community adapt to a ‘new normal’.”

The NCCN discovered that patient advocacy groups are extremely important to ensure that patients have the resources they need to access high-quality care from diagnosis to treatment and throughout survivorship.

“Multistakeholder groups that bring together survivors, caregivers, providers, and researchers provide an invaluable service to the oncology community. It is only through active education and research that we can provide high-quality, patient-centered survivorship care for all. Moving forward, there is a need for comprehensive coordinated care across the healthcare system post-treatment, adequate reimbursement mechanisms for post-treatment care, and research to define and quantify optimal service delivery in providing high-quality, patient-centered survivorship care.”

Navigating the myeloma journey is not easy. To find more support, join our Myeloma Crowd Facebook Groups, find more on our financial resources page and learn how you can better navigate your own care using a new tool called HealthTree.