Economic Burden of Myelodysplastic Syndrome

Considerations for the broader economic and administrative burden of myelodysplastic syndrome.


Amer Zeidan, MBBS, MHS: The economic impact of MDS [myelodysplastic syndrome] in general is quite severe. There are significant consequences to the patient on the health side, but if you look from the economic point of view to the patients, there is significant resource use that happens because those patients will often be transfusion dependent. They will often need to be coming to the center to receive blood and platelets, and these chronic transfusions can be quite costly.

Unfortunately, most patients with MDS will rely on these transfusions when they have high-risk disease unless they achieve good responses with their therapy. Generally, the responses don’t always appear, and they are usually not long lasting. Most patients will go into periods where they are needing transfusions and periods where they are not. They then go back again to needing transfusions. Some of the other aspects that are important is that those patients are often hospitalized because they are at risk of infections, so they develop all kinds of infections that end up putting them in the hospital and all the resources that are needed there.

The therapies we use for myelodysplastic syndromes can also be quite expensive. There are other types of economic cost, such as the time lost by family members who are driving these patients back and forth and having to take time off work. Because MDS generally appears in older patients, we don’t see a lot of indirect losses related to loss of productivity or economic productivity of the patients because they are generally in their 70s. But for the patients who are younger, that could factor in. If you take all patients on average, because of the short survival with MDS and the more aggressive forms, you have only those lost years of productivity for the younger patients. Because bone marrow transplantation is a quite expensive procedure, we tend to do it in younger patients. That will have significant economic implications for the health system.

Administrative burden is along the lines of all those aspects we discussed, coordinating care. Most of those patients would require a lot of coordination in terms of their visits. They often come to the infusion space or the clinic twice a week. They will need a lot of coordination with the blood bank for their transfusions and a lot of coordination for how often they come for their treatments. If they are receiving hypomethylating agents, getting their blood counts checked on frequently, and if they are going for bone marrow transplant, that has its own layers of administrative burden. Those diseases generally require close contact with the patients. The patients are intimately involved with the system. They are frequently seen, and it definitely imposes a significant burden both economically and administratively, and on the patients and their lifestyle, as well as physicians and the treating centers.

There are several problems that arise with having MDS. Myelodysplastic syndrome increases the chances of having similar complications. One of the complications we often see, for example, is iron overload because those patients get a lot of transfusions, especially patients with lower-risk MDS who can live for several years and need a lot of transfusions. As the iron builds up, it can affect the liver. It can affect their heart. Other problems can arise, for example, cardiac remodeling related to the severe anemia. We know that patients with transfusion dependence have higher risks of cardiac problems, liver problems, and recurrent infections.

In addition, patients with MDS don’t have only MDS. They are generally in their 70s, so they often have diabetes, hypertension, coronary heart disease, and those other conditions. Having low platelets, for example, is 1 of the problems we have because those patients cannot be on strong blood thinners, for example, if they have atrial fibrillation or coronary artery disease. If they have low platelets, we cannot give them the antiplatelet agents or blood thinners they need. This is 1 example, but the management of other conditions gets affected quite a lot. As physicians who treat MDS, we try to work hard with the patient and their primary care physician to coordinate all those different aspects of care, especially as those patients tend to see us quite often compared with other forms of cancer management.

MDS progression is a difficult and unfortunately common situation. Usually what happens in most patients is that their blood counts would worsen, so they will need more frequent visits to the treatment center to get blood transfusions, potentially platelet transfusions. Their immune system will weaken; they will usually require more admissions for severe infections. Other symptoms could occur; patients could have more fatigue. They are spending more time in the treatment center. Their quality of life will, of course, worsen. Their response to the blood transfusions might become lower, so they are not getting the same degree of improvement in their symptoms with blood transfusions. They can sometimes become refractory to platelet transfusions, which increases their chance of bleeding and potentially increases the amount of time in which they need to come to the center to get more frequent platelet transfusions. In some patients, the disease can develop into a more aggressive acute leukemia, and those patients would need to be treated in the hospital for several weeks, sometimes with intensive chemotherapy. All those factors can occur in patients, which makes their quality of life somewhat worse.

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