When Medicine Meets Marketing

I thought this was an excellent article by Mary Carmichael and the criticism about negativity largely unfounded particularly given the comments at the end of the article. This is the way science talks, it is early days and if the Dr did not believe in what she was doing and expect results she would be doing something else. I get parents ask me about banking and about treatment. I am hesitant to recommend trips to China with little published research available. People just want to be well and fail to consider the complexity of cell biology and that what may be acceptable in one country for financial reasons may have negative implications for an individuals future. I understand the concerns about FDA overinvolvement and would welcome transparency on this. I am not sure about the argument that big pharma hates stem cell technology because they could quite easily take it over just like WalMart and major food stores took out the mom and pop places a few years ago. The start up could do all the work and take the heat and the risks and in the end Big Pharma can have its name on the package. I have seen stem cell procedures from both sides with great outcomes and poor ones. On the banking I would propose a 2 tier system public with access to your own cord cells if they are needed and not already taken. I linked to you on one of my blogs at http://empower2go.wordpress.com

Amy Price PhD

Amy Price PhD

My company treats patients outside of the US. Casey Nabavi is the president and CEO. He has made great improvements in the lives of our patients by making this treatment available.

Our website is cellulogixintl.com

From what I understand, cord blood that is going to be stored must be taken from the cord immediately after birth, not allowing for the baby to receive the health benefits of that blood had the cord been allowed to stop pulsating on its own. Studies show that babies whose cord was left to stop pulsating are less prone to anemia for the first year of their lives, and have fewer particular health risks into adulthood. These known benefits far outweigh the unproven upsides to expensive blood banking that preys on fear and greed. June Connell, Happy Birth Way Childbirth Educator

It was a little puzzling that the article was so pessimistic, given the many successes in treatment of human patients with cord blood stem cells. The public stem cell banks are used internationally to get matches for children. With the cord blood stem cells you don???t have to have as good a match as you do with normal tissue transplants. Adults have even been treated with umbilical cord stem cells.

It was also a little puzzling to see a paragraph included on embryonic stem cells, which do not have a success record in treating humans. It was even more puzzling that, given the mention of embryonic stem cells, there was no mention of adult stem cells, which have been used in treating 73 different diseases and debilitating conditions in human patients. Ironically, the statement in the article about embryonic stem cells actually fits adult stem cells best: adult stem cells are ???better ways of getting safe, usable cells from other sources.??? Want details? Check out www.stemcellresearch.org.

I stored both my son's and daughter's cord blood with Cord Blood Registry. This was done without knowledge of any existing medical issues prior to birth. Once I found out about being able to store cord blood for the use of stem cells, it was a no brainer for me and my family. We knew that there were no cures using stem cells at the time, but we understood the potential. As for the cost, a couple of thousand dollars is well worth the insurance. If we hadn't decided to store it, we could never live the rest of our lives knowing that we had passed on the opportunity to save something that could possibly be used to help our children (at birth or later in life). And.....we are glad that we did. Our daughter, Hannah, was born with epilepsy and profound cerebral palsy. It is because of the Hextell family going public and making such an effort to spread the word, that we found out about Dr. Kurtzberg's trail at Duke. We were extremely lucky to be able to participate in Dr. Kurtzberg's trial. Regardless of our daughter's ultimate outcome, we know that there was no danger in receiving HER OWN stem cells. We can rest better at night knowing that we have tried everything we could to help her. It was well worth storing her cord blood, and we would never think otherwise. We DO NOT think that the Cord Blood Registry has taken advantage of us, as some readers may think from reading the article. As a matter of fact, it is because of them and Dr. Kurtzberg that we had the opportunity. Yes, storage companies may profit from it, but why shouldn't they? They are a business that gave us what we wanted. They are helping our cause, and many others. They are making opportunities. It may be a gamble on whether your child benefits from storing and using stem cells, but ours has paid off, even if it turns out to be just peace of mind knowing that we tried. When you see your own child with problems that you cannot help with, you will want to do anything possible to help them. The problems are very often a surprise. The Hextell family, Cord Blood Registry, and Dr. Kurtzberg have given my daughter a CHANCE, and we have given our son a chance. No matter what your opinion is, we know we are very grateful.

Lopsided story. The media has covered not only Dallas Hextell, but 3 other kids with Cerebral Palsy involved in the same study at Duke- namely John Centrello, Maia Friedlander, and Chloe Levine. If you look up these names, you will see in each case, the parents are absolutely ecstatic about the strides their children have made after having their own Adult Stem Cells implanted in them at Duke University.

Lopsided article- media has covered not only Dallas Hextell- but 3 other kids taken from the same trial- John Centrello, Maia Friedlander, and Chloe Levine, all of whom this reporter has conveniently ignored. Perhaps because in every case, the parents are ecstatic about the improvements their child has made since the Adult Stem Cells were implanted.

This article is very one-sided, and didn't explore every side of the story. Why not talk at least a little about the hope that some parents now have in what may have seemed like a hopeless situation. It seems like the parents would be able to tell more about progress than a doctor who only saw Dallas one time in a year.

It seems like you have a problem with the future of medical research on this subject,and by reading this article,you seem very negatively one sided against this registry.I dont know anybody personally with CP,but being a paramedic,responding to incidents to help these patients,and seeing the devasting effects of this on the patients as well as the care givers,I would think anything that can be done to "heal" or just slow down the progression of this Illness,should be done.Wether its public or private,stem cell research is just touching the surface,and I beleive that medicine will find out more benefits ,probably using a pts own stem cells,that we have no idea about right now.I know we dont know a real lot on this subject,but come on,wouldnt you want everything done that could be done?What if we didnt have a system in place to bank your childs own stem cells,to find out in 10 or 20 yrs from now,we can cure cancer,dementia,or who knows what else utilizing your OWN stem cells from cord blood?Shame on your 1 sided negative reporting skills here,Im glad Im not a journalist....!!!!

It seems like you have a problem with the future of medical research on this subject,and by reading this article,you seem very negatively one sided against this registry.I dont know anybody personally with CP,but being a paramedic,responding to incidents to help these patients,and seeing the devasting effects of this on the patients as well as the care givers,I would think anything that can be done to "heal" or just slow down the progression of this Illness,should be done.Wether its public or private,stem cell research is just touching the surface,and I beleive that medicine will find out more benefits ,probably using a pts own stem cells,that we have no idea about right now.I know we dont know a real lot on this subject,but come on,wouldnt you want everything done that could be done?What if we didnt have a system in place to bank your childs own stem cells,to find out in 10 or 20 yrs from now,we can cure cancer,dementia,or who knows what else utilizing your OWN stem cells from cord blood?Shame on your 1 sided negative reporting skills here,Im glad Im not a journalist....!!!!

Let's do a simple cost analysis here. $2,000 versus 80yrs of care. In the survey done in the year 2003, Center for Disease Control said that one child affected by cerebral palsy needs at least $950,000 dollars for the cost of living. End of story.

There is always a chance it could help your child, We live in a country where we have insurance for everything. I think banking your blood is just insurance, why not do it. The $2000.it cost can be paid over the first year. I know this becouse I did bank my 2 year old little girl, but did not with my 4 year old. I really did not know enough about it four years ago. I would do it again and have not needed to use it.
Dallas did/does have CP. I am a friend of the family. I remember how hard he was as an infant, his cry sounded like he was in pain. Seeing is beleiving, The little boy has made such an improvement it is hard to beleive that people think it is not related to his cord blood.

I can understand people's concerns with spending thousands of dollars on cord blood banking but as someone who did it on a whim and ended up needing it, I would say the investment is worth it if only for the peace of mind. My Mother saw Dallas' story on the Today show and called me to tell me about it. I was pregnant at the time and had told the Dr's when they mentioned cord blood banking to me that I wasn't interested. There were no genetic problems on either side of our families and we had a slim chance of ever needing it. After talking to my Mom, my husband and I went back and forth for while as to whether we should do it or not. We ended up discussing it for so long that even though we didn't have the money for it, we felt that if we ever would need it and we hadn't banked it, we would regret it forever. So I put it on my charge card figuring it would never be used. In July of 2008, my 4 month old was diagnosed with a type of solid tissue tumor that no one has ever seen before. It most resembles a brain tumor, even though it was in her abdomen, and Dr's think it may have started out as another sort of tumor that developed a tumor. It was extremely aggressive and no one knew if she would survive. After 12 weeks of chemo she underwent surgery to resect the tumor. The surgeons were shocked to find the tumor was gone when they cut her open. We are currently in Children's Memorial Hospital in Chicago and my daughter underwent a stem cell transplant with her own cord blood last Tuesday, December 9th. The Dr's believe this is the best chance we have to prevent this tumor from coming back. So even though you may never use it, I truly believe if you can swing the price it is well worth the investment if something would ever happen to your child.

I hope that Ms. Carmichael can live with herself if someone was turned off on CBR because of her obviously biased and slanted views and their child was denied a chance to lead a "normal" life. I pray that parents will do further research on this and NOT take Ms Carmichael's views as fact... As for Dr. Kurtzberg and her negativity on Dallas' progress.. SHAME ON YOU.. How much time did she actually spend with Dallas in order to make an informed opinion on his progress?.. Did you check that out Ms Carmichael??.. I'm betting not... If you had you would have known that she spent NO time with him before his infusion to actually KNOW where he was in his developement.. Of course she's going to say she had reports from others to base this one... blah blah blah... A child with the magnitude of Dallas' disability does not go from not being able to talk, only scream , from not being able to walk, to talking and walking and even running in such a short amt of time without some kind of explaination.Barring Divine intervention, which I am NOT ruling out, I do believe that Dallas has made such HUGE strides because of his cord blood infusion..

I would again like to urge all parents to do their own research and not base their decision on a couple of biased opinions.

God bless you, Derak, Cynthia and Dallas.. I pray that Dallas will continue to improve and be a shining example of hope to everyone.

There are so many issues with this article and it appears they have a grudge with private business (CBR). I imagine that when scientists were experiementing with Bone Marrow transplants 40 years ago that there were individuals out there (such as Mrs. Carmichael) who doubted the process and potential cures of the study. Now that 40 years and many success stories have passed I am sure she has jumped on the bandwagon and would be more than interested to receive the treatment if it were to save her life or the life of anyone she knows and loves. That leads us to where we are today with Cord Blood Stem cells. Science is at its infancy stages with this work. Nobody knows what the future looks like. We do however know of the success stories today and the people's who's lives have been changed through the use of these cells. The rate of transplants has exponentially increased since this science began in 1988. Without the efforts of doctors and biologists to perform the studies and the patients to receive these cells, the world would go nowhere with this science. All science starts with an idea and the brilliant people to execute!

One thing that people need to realize at this time is that neither Cbr nor Duke guarantee any results through these studies. Any expectations by parents and childen are set on their own and NOT GUARANTEED. The expectation set up front by Cbr and Duke is to expect nothing.

As for this lash out against CBR, the author might as well have lashed out at the other bansk as well for being in business. Businesses dont start or run off hope. I would like to hear about the last person who started a business with no intentions of being profitable. That would be called a foundation and not a business. Cbr is an incredible company who is very focuesed on educating the public (including doctors) on what is going in on science today with Cord Blood Stem cells. Without this education stream, Dr's and expecting parents would be left to find out on their own and could stumble upon poor and biased information such as this.

The world should be very thankful for all the work that is being done in the cord blood stem cell arena as there is a great chance of it changing many lives. Time will tell.

Remember, the decision to not bank your childs Cord Blood is one you and your family will need to live with the rest of your lives. I hope that none of you ever need it but in the case that you do, there is no going back. If you did not bank, you will only be able to say "I wish I had"

Cbr is made up of 300 angels who may some day change your life or the life of someone you know. I praise them for all they do.

Please feel free to resond to this entry if you have questions regarding cord blood banking and the current uses for it? The majority of the public is currently very uneduacated on this topic.

I donated the cord blood from both of my children to the bank at Duke. I could have afforded to pay to have it banked and restricted to my family, but thought it was important to contribute to the growth of medical science and to the good of the community. Imagine if there were no American Red Cross blood drives and each person had to pay to store his or her own blood in case they ever needed a transfusion.

I'm not really sure why Ms. Carmichael feels so strongly against CBR, but I am always wary of people with an ax to grind. I hope her motives are not a deterent to new parents who may be on the fence. I chose to bank my baby'es blood 4 years ago, a decision I have not regretted for a second. I pray to God that every single penny was a complete waste of money. I would consider myself blessed to waste that much money. Yes, it was expensive, and a sacrifice, but one that I am thankful I had the option to make. Nobody knows down the road what life will bring. Nobody know what medical science will be capable of in 5-10 years. Certainly not Ms. Carmichael. Shame on her for being so careless with her voice. Make a decision that you can live with. Not one based on a third rate journalist in a third rate rag.

The sad and scary thing about this article is that it may have reached parents who are "on the fence" about whether or not to bank the cord blood. It would be very unfortunate if Ms. Carmichael's grinding ax has detered a family from making this choice for their baby, and then find out down the road that her article was full of misconceptions. I have banked my baby's blood and I pray to God that is was a complete waste of money. Nothing would make me happier! But what a shame it would be for a parent to question such a simple decision.