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Old Sun Jan 20, 2013, 03:45 PM
Neil Cuadra Neil Cuadra is offline
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Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,553
Jody,

A donor should be as good an HLA match as possible. They test a certain number of genetic markers and want to match as many as possible. My wife had a 6-of-6 match, which was considered "perfect" at the time, but that was before they routinely tested 8 or 10 markers. When they test 6 markers it's 3 pairs named A, B, and DR. When it's 8 they add the C pair. When it's 10 they'll typically added the DQ pair.

If you have multiple 6-of-6 or 8-of-8 matches, they'll want to know if they match as 10-of-10. If they do, they have to find out which of those potential donors are actually available, willing to donate, and still medically eligible. If you still have a choice of equally matched donors, other factors would help determine the choice, including age, the number of children a female donor has had, CMV (cytomegalovirus) status, and other details. Perhaps a racial match would be a factor too, all other things being equal, since a match in ethnic background would make it more likely that HLA markers of lesser importance would match as well as the markers they tested.

Perhaps it's a silly analogy, but I find it helpful to compare patient-donor matching to an online dating site. You ask single people 6 questions and match them up for dates with people who give matching answers. If you ask them 8 questions you've got a better chance of making the best matches. If you ask them 10 questions that's even better. You can improve things further by making the questions more detailed, the way they use DNA analysis to check antigen matches more closely.

Finding 509 matches at 8-8 is very good news. It means that Trevor's HLA types aren't unusual. Some people have rare markers or rare combinations and find no matches at all. Any one of those 509 matches is a potential donor, and the hospital will coordinate with the managers of the bone marrow registry to narrow the selection. Searches in the U.S. national registry can be augmented by searches of international registries.

The NIH is a government funded research facility. They have top-notch staff but accept patients only if there's a study the patient can join. All medical care is provided without charge since it's taxpayer funded. The Cleveland Clinic is also top-notch and up on the latest research, but isn't free. If Trevor's care would be paid for by the government due to his incarceration then that may not be a concern; otherwise you'll need to check on insurance coverage for treatment at the Cleveland Clinic. You should also check whether he'll really have a choice of treatment center or whether his options will be limited.

You'll need to know if NIH has a study Trevor would qualify for. You can contact them and ask about getting an evaluation, which is also free.

You also need to consider whether you'd expect to be with Trevor in person for most of his treatment. That would be a lot easier and cheaper for you near home than if you had to move to Maryland for the duration of his treatment. The NIH can help find nearby housing for family members, but food and housing costs can still drain your budget.
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