The MDS Beacon™

The Centers for Medicare and Medicaid Services (CMS) is currently accepting input from the public about whether the Medicare program should be expanded to cover the cost of bone marrow and umbilical cord blood transplants for myelodysplastic syndromes (MDS) patients. Submissions can be made on the CMS Web site through December 10.

Medicare coverage of bone marrow transplants, the only known curative treatment for MDS, is important because 80 percent of MDS patients are 65 or older. MDS patients typically respond best to allogeneic stem cell transplantation, where the bone marrow of a patient is initially destroyed by chemotherapy or radiation and then replaced with donated bone marrow that is able to produce normal blood cells.

“Without coverage for allogeneic transplant, many patients with MDS are simply forced to wait until they become even more ill before qualifying for a transplant after being diagnosed with acute leukemia,” said Mike Boo, chief strategy officer of the National Marrow Donor Program (NMDP).

The NMDP is one of many organizations encouraging the public to voice their support by submitting comments and personal stories to CMS.

The strongest evidence in support of national coverage for Medicare-aged MDS patients comes from studies that show five-year survival rates after allogeneic stem cell transplants are significantly longer than supportive care methods. Of these non-curative treatments, chemotherapy has presented the best five-year survival rate at 8 percent, while transplants result in approximately 20 to 30 percent survival.

According to Boo, the largest age group of patients receiving transplants through NMDP is over 50 years. Last year, 36 percent of transplants from unrelated donors were to patients over 50, while 7 percent of unrelated transplants were for patients 65 and older.

Previously, the risks associated with stem cell transplantation were considered too dangerous for older patients. However, new technology and reduced-intensity chemotherapy regimens have increased the number of elderly patients who are offered this curative option (see related Beacon news).

CMS has given the public the opportunity to submit comments and stories as the center prepares to review evidence surrounding the use of allogeneic bone marrow transplantation for MDS patients in the coming year. They are specifically looking for scientific observations and recent clinical trials that demonstrate that allogeneic transplants are safe and effective in MDS patients 65 years and older.

“Patients who have been told that they are good candidates for transplantation but who are unable to undergo the process due to a lack of Medicare coverage have important stories to share,” said Boo. “Additionally, patients or families of patients that had MDS and, because of the coverage limitations, were unable to receive a transplant until their condition worsened, are also very important.”

Efforts to include national coverage of bone marrow transplants for MDS patients was initiated in September 2009 by a coalition of blood cancer and bone marrow foundations. It is projected that CMS will make their decision to include or exclude the expanded coverage by August 2010.

For more information, please see the CMS Web site, including the National Coverage Determination Request (pdf), which is a letter to CMS that documents supporting evidence and new data and formally requests consideration of this issue.

Public comments in support of Medicare coverage of transplants for MDS patients can be viewed on the CMS Web site. Additional submissions may be made through December 10. [Several of the CMS pages are loading slowly due to the volume of people trying to access them.  According to CMS, there is no other way to submit comments.  Please allow the site plenty of time to load or try again later in the day.]