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The hospital board has officially adopted the new protocol for tracking outcomes among mixed heritage patients. This result ensures that the specific medical risks these individuals face will no longer be obscured by broad data sets. I appreciate your commitment to this cause and encourage everyone to monitor the implementation …

December 10, 2009

Bone Marrow Transplant Patients Deserve A Better Chance To Survive

Bone Marrow Transplant Patients Deserve A Better Chance To Survive

🏆 Won — 339 supporters Verified

Final supporters

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Kristen C.
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+329 more
Started by Anonymous 16 years, 9 months ago

Getting a stem cell transplant is often the only way that people with more than 80 different medical conditions such as leukemia, sickle cell anemia and lupus will survive. The majority of transplants are done using bone marrow stem cells from an unrelated donor. Bone marrow donor cells that do not recognize their recipient as the person they came from elicit an immune response called graft versus host (GVH).


Most people can't find someone that is genetically just like them to serve as a perfectly matched bone marrow donor. The genetic diversity of mixed heritage people, however, makes even finding a partially match donor nearly impossible, and many die without ever being able to find a bone marrow donor. Those "fortunate" enough to find a partially matched donor frequently die of a severe GVH response (GVH disease) following the transplant.


Sadly, the death of mixed heritage patients often gets lost in the hospital's outcomes data because such patients are almost always included as part of a larger racial group such as Asian or African American. Hospital policies to prevent the frequent and avoidable deaths are, therefore, nonexistent, and transplant physicians, in general, remain unaware of the imminent danger bone marrow transplants from unrelated donors cause mixed heritage people, in particular.


The blood present in the umbilical cord that links a mother and child is also a rich source of the same stem cells found in bone marrow. However, since babies can only mount a very weak immune response that can't even protect them from a serious cold, cord blood stem cells demonstrate little life-threatening GVH response. Cord blood is collected from the umbilical cord by the physician, nurse or midwife after the delivery. The collection is simple, painless and not harmful to the mother or baby in any way. Most mothers would gladly donate their cord blood rather than allow it to be thrown away with the medical waste.


We are sending this petition to stem cell transplant centers and asking them to preferentially give cord blood stem cell transplants when their mixed heritage patients don't have a related donor or a perfectly matched, unrelated bone marrow donor. 

A growing number of stem cell transplant centers, such as the University of Minnesota, are already doing what we are asking for all of their patients, regardless of race or ethnicity. Minnesota's experience indicates that GVH disease is greatly decreased when they use cord blood stem cells instead of bone marrow. 


We'd like to thank you for those that will now live because you took the time to sign this petition.

Updates

November 8, 2009

The petition has now reached two hundred and fifty signatures. This level of engagement confirms that many of you recognize the urgent need to address the challenges faced by transplant recipients. I appreciate the attention you have brought to this cause.

Reached 250 supporters

November 7, 2009

November 4, 2009

I have spent this week reviewing the personal accounts contributed by individuals affected by graft versus host disease. These stories underscore the urgent need for systemic changes to donor matching protocols. My efforts remain focused on presenting this compelling evidence to medical oversight committees.

Reached 100 supporters

November 1, 2009

6 Comments

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Sarah Singh
16 years ago Featured

My cousin went through this and it was heartbreaking to watch. Everyone deserves a fighting chance at life.

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Linda Becker
16 years ago Featured

Im mixed race and just learned how hard it is to find a match. This is really scary stuff.

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Tom McBride
16 years ago Featured

too many people are dying. science is there but the access isnt. do better.

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David Vargas
16 years ago Featured

Fix this. People are losing their lives while we wait around for better systems.

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Jessica Mitchell
16 years ago Featured

so sad that genetics determine if you get to live or die. lets get more donors on the list!!

M
Mike Wong
16 years ago Featured

why do we still have so many hurdles for people just trying to live? this needs to change now.

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