Wasted opportunity, cord blood?

[Guest guest]

I guess this is a question for or a.

I was just reading about cord blood, and how family members can use it for

life saving procedures now and in the future because it's a better match. I

almost wished I could have asked Jeff and Suzi if I could have it and freeze

it to treat my RA in the future. After all, they just got rid of it, but

what a hard thing to ask. Well, it's too late anyway. Just ruminating. I

think the cost to save it is around $2000, from what I read.

Is this something we should be considering as a possibility if the

opportunity arises? I know at the present it would be cost prohibitive, but

10 years from now it might be something quite feasible, and isn't it a cure

rather than a treatment?

Just food for thought (kind of morbid, though).

Carol

[Guest guest]

I agree with you, Carol, that it is a " wasted " opportunity. When my

grandson was born, my daughter's insurance wouldn't cover that

procedure to save the blood, and we didn't know until the last minute

how expensive it is. I think the medical profession needs to

reassess their charges on procedures, especially something that may

prove life-saving to a child later on.

Judi

[Guest guest]

Carol,

I wish you could have saved it too. I hope in the future it is more

reasonably priced to save the cord blood. It can be a lifesaver to the

whole family.

Diseases Treated with Cord Blood

http://www.cordblooddonor.org/diseases.htm#Diseases%20Treated

a

> I guess this is a question for or a.

>

> I was just reading about cord blood, and how family members can use it for

> life saving procedures now and in the future because it's a better match. I

> almost wished I could have asked Jeff and Suzi if I could have it and freeze

> it to treat my RA in the future. After all, they just got rid of it, but

> what a hard thing to ask. Well, it's too late anyway. Just ruminating. I

> think the cost to save it is around $2000, from what I read.

>

> Is this something we should be considering as a possibility if the

> opportunity arises? I know at the present it would be cost prohibitive, but

> 10 years from now it might be something quite feasible, and isn't it a cure

> rather than a treatment?

>

> Just food for thought (kind of morbid, though).

>

> Carol

>

>

>

>

>

[Guest guest]

This is a good question and complex issue, Carol. There is a lot of the

hype about saving cord blood for one's baby or family coming from

organizations making money off of the procedure. The way in which some

of these groups advertise, it is implied that a parent or family is

foolish, maybe even negligent, not to pay thousands to store the cord

blood. I believe that's going much too far.

Of course, himself would be the best match for his own cord

blood, but what is the probability he will need it?

According to F. Leonard , MD of Oregon Health Sciences

University:

" Thus, at most only 0.04 percent of the cord blood units stored for the

baby's exclusive use might actually be used--and this is very likely a

gross overestimate. "

http://www.bmtnews.org/newsletters/issue43/doctor.html

You're asking about use for you or another family member, so that is a

little different. As a family, there might be more of a chance that

something will go wrong with one member and that that person could

benefit from a stem cell transplant using the cord blood.

And you already do have immune system problems. It's not unreasonable to

wonder if 's cord blood stem cells could help you some day, but

there is no guarantee that and you will be a good enough match

in order for his cord blood to be of clinical value to you (you can have

it tested and yourself tested before you store it). In general, the odds

are better for a good match with his cord blood than for a bone marrow

match with him or someone else in your family or going through a donor

registry to find a match. But using your own stem cells is not out of

the question for some procedures and, naturally, they would be a perfect

match.

Research with stem cell transplant procedures or therapies that are a

variation on that theme (like B-cell depletion) for the treatment of

immune system problems such as RA have been done and continue. The

problem is, we still don't know what the cause of a disease like RA is,

so it's hard to know why in some patients these therapies offer relief

and in others there is no effect or a rapid relapse.

People have raised important questions about cord blood storage

techniques and cost - For how many years will the cells be viable? (I

think the longest stored cord blood stem cells used so far have been

less than 10 years old, but there are some experts that claim the cells

should remain viable for decades.) Will there be enough cells from the

cord blood to use in an adult? Aren't there cheaper therapies already

available or in development?

I like the idea of saving the cells for use in a cord blood donation

bank. I think there is more of a chance of helping someone, possibly

even the donating family, that way. There is no cost to donate it. You

aren't guaranteed that it will be there if you need it, but, if waste is

a concern, at least there is more of a chance that someone will be able

to use it.

[ ] Wasted opportunity, cord blood?

> I guess this is a question for or a.

>

> I was just reading about cord blood, and how family members can use it

for

> life saving procedures now and in the future because it's a better

match. I

> almost wished I could have asked Jeff and Suzi if I could have it and

freeze

> it to treat my RA in the future. After all, they just got rid of it,

but

> what a hard thing to ask. Well, it's too late anyway. Just

ruminating. I

> think the cost to save it is around $2000, from what I read.

>

> Is this something we should be considering as a possibility if the

> opportunity arises? I know at the present it would be cost

prohibitive, but

> 10 years from now it might be something quite feasible, and isn't it a

cure

> rather than a treatment?

>

> Just food for thought (kind of morbid, though).

>

> Carol

[Guest guest]

I think you're right, , that the best idea is for parents to donate to a

bank. I hold a lot of hope that stem cells will someday be an answer for RA

and many other diseases. One can only hope!

Much love,

Carol

Re: [ ] Wasted opportunity, cord blood?

This is a good question and complex issue, Carol. There is a lot of the

hype about saving cord blood for one's baby or family coming from

organizations making money off of the procedure. The way in which some

of these groups advertise, it is implied that a parent or family is

foolish, maybe even negligent, not to pay thousands to store the cord

blood. I believe that's going much too far.

Of course, himself would be the best match for his own cord

blood, but what is the probability he will need it?

According to F. Leonard , MD of Oregon Health Sciences

University:

" Thus, at most only 0.04 percent of the cord blood units stored for the

baby's exclusive use might actually be used--and this is very likely a

gross overestimate. "

http://www.bmtnews.org/newsletters/issue43/doctor.html

You're asking about use for you or another family member, so that is a

little different. As a family, there might be more of a chance that

something will go wrong with one member and that that person could

benefit from a stem cell transplant using the cord blood.

And you already do have immune system problems. It's not unreasonable to

wonder if 's cord blood stem cells could help you some day, but

there is no guarantee that and you will be a good enough match

in order for his cord blood to be of clinical value to you (you can have

it tested and yourself tested before you store it). In general, the odds

are better for a good match with his cord blood than for a bone marrow

match with him or someone else in your family or going through a donor

registry to find a match. But using your own stem cells is not out of

the question for some procedures and, naturally, they would be a perfect

match.

Research with stem cell transplant procedures or therapies that are a

variation on that theme (like B-cell depletion) for the treatment of

immune system problems such as RA have been done and continue. The

problem is, we still don't know what the cause of a disease like RA is,

so it's hard to know why in some patients these therapies offer relief

and in others there is no effect or a rapid relapse.

People have raised important questions about cord blood storage

techniques and cost - For how many years will the cells be viable? (I

think the longest stored cord blood stem cells used so far have been

less than 10 years old, but there are some experts that claim the cells

should remain viable for decades.) Will there be enough cells from the

cord blood to use in an adult? Aren't there cheaper therapies already

available or in development?

I like the idea of saving the cells for use in a cord blood donation

bank. I think there is more of a chance of helping someone, possibly

even the donating family, that way. There is no cost to donate it. You

aren't guaranteed that it will be there if you need it, but, if waste is

a concern, at least there is more of a chance that someone will be able

to use it.

[ ] Wasted opportunity, cord blood?

> I guess this is a question for or a.

>

> I was just reading about cord blood, and how family members can use it

for

> life saving procedures now and in the future because it's a better

match. I

> almost wished I could have asked Jeff and Suzi if I could have it and

freeze

> it to treat my RA in the future. After all, they just got rid of it,

but

> what a hard thing to ask. Well, it's too late anyway. Just

ruminating. I

> think the cost to save it is around $2000, from what I read.

>

> Is this something we should be considering as a possibility if the

> opportunity arises? I know at the present it would be cost

prohibitive, but

> 10 years from now it might be something quite feasible, and isn't it a

cure

> rather than a treatment?

>

> Just food for thought (kind of morbid, though).

>

> Carol