How long for a match?

[edithr]

If my son would have to be put on the bone marrow match registry, what is the typical wait time to find out if he has a match? Weeks? Months? I hate the not knowing part of this all. thanks.

[Neil Cuadra]

Edith,

Physicians can request a search of the marrow registry and have results the next business day. This identifies potential donors or cord blood units that match the patient by HLA type, based on information in the database.

Before the marrow can actually be used, there are more steps to the process. They have to verify the match with a new blood sample, test more thoroughly to see how good a match it is, and in the case of a volunteer donor (not cord blood) they have to see if the donor is really available, qualified by health, and willing to donate marrow or peripheral blood stem cells.

The median search times are 51 days for a volunteer donor and 2 weeks for a cord blood unit. That means that the process takes less than that amount of time for 50% of patients and more than that amount of time for the other 50%.

Here is a diagram of the search process.

When there are no matches the doctors can search other international registries or consider a transplant with a partial match. Some families organize their own community events to get people to join the registry, and it's great to get more people to sign up, but the chances of finding a match that way are very slim.

The more common the patient's HLA type, the more likely it is to find matches. Caucasians and patients with an American or European background have a statistical edge simply because a higher percentage of caucasians and westerners have joined the registry compared with other races, nationalities, and ethnicities.

[Lindano]

Neil, I have been told that I have 59 potential matches, do you happen to know what the chances are of finding the match with the first blood they bring in will be. My insurance has some funny clause in it, they paid to test my 6 siblings with no matches, so they are done paying for typing. Therefore, we will have to bring the donor blood in 1 at a time for typing because of the extreme cost. My question is do they have a fairly good idea at this point that they have a good match or could this testing go on literally for all 59, or until we cannot afford another one?

[edithr]

Hi Lindano,

Sorry to hijack your answer, this is the first I've thought about insurance. Can you tell me more about what I might have to look for with my plan? I say might because I don't even know if we have to go that route yet.

And my prayers are with you.

[Lindano]

Editor,
My insurance was going along with everything until we go to the point of actually trying to bring in samples of the potential donors for typing to get an actual match. Then all of a sudden I was called by the hospital and informed that my insurance company had a limit on the amount of money they will spend for search and we have met that, therefore they don't care how much we search they will not pay. Each search will run between 7-9 thousand $. So we will be forced to test one at a time and hope the match comes quickly. I have received the documentation that they will cover the actual Transplant but they will not pay to find a Donor, go figure that one. One of those things you can never imagine being the case but it is.

[Neil Cuadra]

Linda and Edith,

I'm sorry but I don't know much about the chances that a potential donor will be confirmed or rejected as a donor. My wife had two potential donors and one was a perfect match and was available, so they may not have even contacted the second one.

As I understand it, the bone marrow registry contains blood samples for some people but only basic information for others. That's because they used to require a blood sample when you registered, but now they require only a cheek swab. That means they sometimes have to bring the donor in to do a second-level test for a match, and that must affect the screening cost. Perhaps they prioritize who they check on that basis.

I suggest that you get information straight from the sources: ask the transplant coordinator or the National Marrow Donor Program (NMDP) contact person at your treatment center to tell you how the process works and how insurance applies. You could also contact the NMDP and ask them about this.

You should know that a good number of insurance company decisions are reversed if they are appealed, so if they deny coverage for a necessary procedure (especially in a life-threatening situation) you should consider using the appeals process to have them reevaluate the coverage. Just make sure you follow the insurance company's appeals procedure by the book.

[Laura]

Contact the marrow registry. www.marrow.org

They help pay for the cost of donor typing, etc, when the insurance refuses to pay.

Laura