[Mar 2008 - ]
We have started working with SAMAR since March 2008. SAMAR is affiliated with the National Marrow Donor Program, NMDP. NMDP covers the cost of HLA typing of minorities with federal funding. We do not collect any insurance information from volunteers any more.
[Oct 2007 - Feb 2008]
We used to work with CRIR through Feb 2008. CRIR is not a minorities-specific registry and does not get federal grants to cover HLA typing of minorities. They cover the cost of HLA typing by billing donor insurance companies as in four US states the test for HLA typing is covered by insurance companies by law. These states are Massachusetts, New Hampshire, Rhode Island and Missouri. Details of the law in MA are available here.
The cost of testing in other states is borne by the registry through fund raising efforts. The amount charged by labs to insurance companies varies drastically from lab to lab and from insurance company to insurance company. The rate is based on bulk negotiations between labs and insurance companies where they may agree upon a large amount for a less common test to offset small amounts charged for more common tests. Regardless of the arrangement between the insurance company and the lab, you as an individual are not responsible for ANY part of the cost of the testing.
There have been some instances where people who provided their insurance information on the forms have been billed large amounts by the lab. In a couple of cases the insurance companies paid the bills and passed on a part of the payment to the volunteers as patient responsibility. This is not supposed to happen. You are not responsible for ANY payments for this test. Also, if you have a cap on your insurance wherein your benefits or payments are impacted after a certain amount has been reached, we will get the charges reversed.
If you do receive an invoice or an explanation of benefits listing an amount paid on your behalf by your insurance company that causes you concern, please call the registry at this phone number, 800-726-2824, immediately and ask to speak to Kim Ikenberry.