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Thread: Pregnant with SCI - do I bank the cord blood?

  1. #1

    Pregnant with SCI - do I bank the cord blood?

    I recently saw Dr. Wise speak at working 2 walk in seattle and learned of his clinical trials in China. I am a t6 paraplegic and am 6 months pregnant with my third child.

    Wondering what the opinion is on banking my baby's cord blood to use for a cure for myself in the future. What is the likelihood that the cord blood could be a match for me? Is it just as likely that I could find a match in the public bank?

    thanks!

  2. #2
    i am also searching for the answer hope someone will tell.

  3. #3
    (Post from Dr. Young)
    My views on umbilical cord blood have changed significantly over the past year. As you may remember, my earlier view was that the likelihood of a "perfect" 6:6 HLA-match between cousins is probably no more than about 25%. Furthermore, at the time, I did not think that the likelihood that umbilical cord blood cells will be used for spinal cord injury would exceed 25%. As the American Academy of Pediatrics suggested in 2006, the likelihood that your grandchild will need and use the blood is less than 1%. Thus, the likelihood of your grandchild's cord blood being used either for your grandchild or to treat your son is substantially less than 10%. This seems to be a low probability of return for an investment of about $3400 over a 10 year period ($1600 initial and then $160 per year for 10 days). For these reasons, I had encouraged people to give the cord blood to public banks rather than storing it in a private bank for themselves.

    However, in recent years, I have changed my mind for three reasons.

    First, the number of applications for umbilical cord blood is increasing dramatically. Three years ago, the only use for autologous umbilical cord blood was to replace bone marrow after chemotherapy for leukemia and other types of cancer. Today, there is evidence that autologous umbilical cord blood cells will be beneficial for many other conditions, including auto-immune diseases (such as diabetes and multiple sclerosis). There is some evidence that it may be useful even for cerebral palsy (which I poo-pooed several years ago). Clinical trials using umbilical cord blood cells for both stroke and spinal cord injury are starting. If you add up all the conditions that cord blood may help, it adds up to perhaps as much as 10% of all the conditions that the baby may develop in its life. It seems to be a worthwhile investment just for this reason.

    Second, the possibility that the umbilical cord blood might be beneficial to the child's uncle is not a small consideration. Even if it has a 10-25% chance of matching, that probability seems to be worth the investment because if it does match and it does work, as you point out, there is no price for return of function. I think that the likelihood that umbilical blood will prove useful for treating spinal cord injury, if properly applied, is increasing every year.

    Third, I have been working with Stemcyte (by the way, please understand that I have no financial interest in Stemcyte, i.e. I don't get a consulting fee or own any stocks of the company). They have provided cord blood units for over 1000 successful transplantations over the past decade, saving the lives of that many people. They are donating the cells for our clinical trials, at substantial cost. I recently heard that they are thinking of donating $100 to spinal cord injury clinical trials for each cord blood unit stored with them. So, one can get a double bang for the buck.

    So, I have been telling people that if they can afford it, people should store their baby's blood. If paying $1600 on the front end and then about $160 per year to continue the storage represents an economic hardship, people should not save the cord blood. They should, however, do it if this amount is trivial for them. People pay more for their television and their cable service.


    (added from another post)
    There is of course controversy about the value of private banking. The chances that a particular child will need to use the blood is less than 1%. For that reason, many doctors believe that private or family banking is not worthwhile. However, almost most medical organizations and doctors do support the collection of cord blood for transplantation purposes for others. The blood bank or company will pay for the expenses of collecting and storing the blood.

    I use to be against private banking of cord blood as well. However, there are two situations that I think private banking is warranted. First, if there are siblings that have genetic diseases (such as muscular dystrophy, amyotrophic lateral sclerosis, Huntington's disease, spinal muscular atropy, etc.) it is probably worthwhile collecting sibling umbilical cord blood. The blood about a 1/4 probability of a match with a sibling and may be helpful to the sibling. Second, cord blood may be useful for acquired conditions such as cerebral palsy. The chances of such conditions are in the range of 5%. Again, while the evidence is still not yet convincing, if the family can afford the cost of storing the umbilical cord blood, they should do so.

    One option that I like is one that is offered by Stemcyte. This is a public banking company (although they have recently started private or family banking as well for people who want to store the blood with a company that has a proven track record of successful transplants) that guarantees that if your child needs to use the donated blood, they will provide the cells free of charge. If the unit has already been used, they will provide an equivalent unit. I think that all umbilical cord blood should be collected for free and that this option is provided for all babies.


    Wise.

    Wise Young, Ph.D., M.D.
    Richard H. Shindell Chair in Neuroscience
    W. M. Keck Center for Collaborative Neuroscience
    Dept. of Cell Biology & Neuroscience
    Rutgers, State University of New Jersey
    Piscataway, New Jersey 08540-8087

  4. #4
    Thanks for the thought provoking response!

  5. #5

    Probability of a match?

    Quote Originally Posted by Jim View Post
    (Post from Dr. Young)
    My views on umbilical cord blood have changed significantly over the past year. As you may remember, my earlier view was that the likelihood of a "perfect" 6:6 HLA-match between cousins is probably no more than about 25%. Furthermore, at the time, I did not think that the likelihood that umbilical cord blood cells will be used for spinal cord injury would exceed 25%. As the American Academy of Pediatrics suggested in 2006, the likelihood that your grandchild will need and use the blood is less than 1%. Thus, the likelihood of your grandchild's cord blood being used either for your grandchild or to treat your son is substantially less than 10%. This seems to be a low probability of return for an investment of about $3400 over a 10 year period ($1600 initial and then $160 per year for 10 days). For these reasons, I had encouraged people to give the cord blood to public banks rather than storing it in a private bank for themselves.

    However, in recent years, I have changed my mind for three reasons.

    First, the number of applications for umbilical cord blood is increasing dramatically. Three years ago, the only use for autologous umbilical cord blood was to replace bone marrow after chemotherapy for leukemia and other types of cancer. Today, there is evidence that autologous umbilical cord blood cells will be beneficial for many other conditions, including auto-immune diseases (such as diabetes and multiple sclerosis). There is some evidence that it may be useful even for cerebral palsy (which I poo-pooed several years ago). Clinical trials using umbilical cord blood cells for both stroke and spinal cord injury are starting. If you add up all the conditions that cord blood may help, it adds up to perhaps as much as 10% of all the conditions that the baby may develop in its life. It seems to be a worthwhile investment just for this reason.

    Second, the possibility that the umbilical cord blood might be beneficial to the child's uncle is not a small consideration. Even if it has a 10-25% chance of matching, that probability seems to be worth the investment because if it does match and it does work, as you point out, there is no price for return of function. I think that the likelihood that umbilical blood will prove useful for treating spinal cord injury, if properly applied, is increasing every year.

    Third, I have been working with Stemcyte (by the way, please understand that I have no financial interest in Stemcyte, i.e. I don't get a consulting fee or own any stocks of the company). They have provided cord blood units for over 1000 successful transplantations over the past decade, saving the lives of that many people. They are donating the cells for our clinical trials, at substantial cost. I recently heard that they are thinking of donating $100 to spinal cord injury clinical trials for each cord blood unit stored with them. So, one can get a double bang for the buck.

    So, I have been telling people that if they can afford it, people should store their baby's blood. If paying $1600 on the front end and then about $160 per year to continue the storage represents an economic hardship, people should not save the cord blood. They should, however, do it if this amount is trivial for them. People pay more for their television and their cable service.


    (added from another post)
    There is of course controversy about the value of private banking. The chances that a particular child will need to use the blood is less than 1%. For that reason, many doctors believe that private or family banking is not worthwhile. However, almost most medical organizations and doctors do support the collection of cord blood for transplantation purposes for others. The blood bank or company will pay for the expenses of collecting and storing the blood.

    I use to be against private banking of cord blood as well. However, there are two situations that I think private banking is warranted. First, if there are siblings that have genetic diseases (such as muscular dystrophy, amyotrophic lateral sclerosis, Huntington's disease, spinal muscular atropy, etc.) it is probably worthwhile collecting sibling umbilical cord blood. The blood about a 1/4 probability of a match with a sibling and may be helpful to the sibling. Second, cord blood may be useful for acquired conditions such as cerebral palsy. The chances of such conditions are in the range of 5%. Again, while the evidence is still not yet convincing, if the family can afford the cost of storing the umbilical cord blood, they should do so.

    One option that I like is one that is offered by Stemcyte. This is a public banking company (although they have recently started private or family banking as well for people who want to store the blood with a company that has a proven track record of successful transplants) that guarantees that if your child needs to use the donated blood, they will provide the cells free of charge. If the unit has already been used, they will provide an equivalent unit. I think that all umbilical cord blood should be collected for free and that this option is provided for all babies.


    Wise.

    Wise Young, Ph.D., M.D.
    Richard H. Shindell Chair in Neuroscience
    W. M. Keck Center for Collaborative Neuroscience
    Dept. of Cell Biology & Neuroscience
    Rutgers, State University of New Jersey
    Piscataway, New Jersey 08540-8087
    Hi Dr. Wise,
    Before reading this I was sure I was going to some how raise the money even go in debt to store my son's cord blood and tissue for my potential use as I am an incomplete C4-C5. I have more of central injury I currently walk with a walker and have almost typical quad hand dexterity issues. So I am excited with the research and thought that having this stored could be life changing for me. But I failed to realize that my son would have DNA from my wife and I, causing him not be the best match for me. Reading this article has me slanting towards donating instead of privately banking. I just have a couple of questions...
    Do you know the likelihood that my son would be at least 4 out of 6 HLA match with me?
    Do you know the likelihood that I would find a 4 out of 6 match from a public registry?

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