Hearing the diagnosis of myelodysplastic syndrome (MDS) can feel surreal—no two experiences are the same—and it's likely shocking in many ways. Not only do you have a type of blood cancer, but it’s expensive to treat.
Understanding insurance coverage, how to navigate healthcare, access specialized care, and managing complex medical needs may not be top of mind, but it is critical, nonetheless.
To get you started, we’ve compiled a guide for navigating healthcare as a high-risk MDS patient.
Accessing Specialized Care and Healthcare Coverage
Accessing specialized healthcare can be difficult for individuals with a high-risk MDS diagnosis. One of the main barriers may be the high cost of healthcare services. A study published in Springer examined the economic impact of patients with high-risk MDS. The study estimates $17,361 per patient per month, similar to those who did not experience acute myeloid leukemia (AML) transformation.
Many high-risk MDS patients may use health coverage services like Medicaid and Medicare. Fortunately, in March 2024, the Centers for Medicare and Medicaid Services added coverage to enhance the availability of treatment to MDS patients: the previous policy limited coverage and required participation in a Medicare-approved prospective clinical study to qualify.
Complement Healthcare Coverage to Cut Costs
If you have the means, shop for a good insurance drug coverage plan. Consider plans that cover expensive drugs or tiers with low copayments for generics.
If your care is through a nonprofit hospital, it may have a financial assistance program. Hospital financial assistance is typically based on your income and assets. This assistance is not limited to those with lower income. Assistance may be calculated based on how many bills you have compared to your annual income.
Many organizations, such as the MDS Foundation, advocacy groups, and nonprofit organizations, can supplement the cost of high-risk MDS healthcare.
Managing Complex Medical Needs as a High-Risk MDS Patient
A high-risk MDS diagnosis may require you to manage complex medical needs. From advanced treatments to specialized medicines, managing complex medical needs as a high-risk MDS patient can become overwhelming, fast.
Patients often use cost to decide how to manage complex medical needs. But that shouldn’t be your sole focus.
Consider the possible risks and benefits when deciding what or how to treat complex medical needs.
- What is your survival outlook? Your high-risk MDS prognosis may determine what you choose regarding the course of your complex medical needs.
- Do you have primary or secondary MDS? Primary MDS has no known cause, whereas secondary MDS is less likely to respond to treatment.
- How is your health aside from your high-risk MDS diagnosis? Most MDS diagnoses occur in people in their 70s. What other health challenges do you face, and how might they impact your treatment?
These topics are difficult to think about but can help you navigate the healthcare system and guide your treatment decisions after a high-risk MDS diagnosis.
