*MS Article* Storing your Child's stem cells

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Why is it so hard to store your baby's 'life-saving' stem cells?

By JUDY HOBSON, Daily Mail 08:17am 20th June 2006

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Foetus

The umblical cord contains potentially lifesaving blood cells

Blood cells from your baby's umbilical cord can be stored to fight

deadly diseases such as leukaemia and sickle cell. So why is it so hard

to find a hospital that will do it? JUDY HOBSON investigates:

on is expecting her second child this week. She has

multiple sclerosis, and would like the stem cells from her newborn's

umbilical cord so they can be used in the for treatment against any

serious illnesses.

But there is little chance of that happening on the NHS, and she had to

battle to persuade the authorities to allow her to do it privately.

Case study

.. I feared taking cord blood from my son was wrong

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Stem cells are the building blocks of life -- they can turn into

different types of tissue in the body and are used to treat conditions

that would otherwise need bone marrow transplants.

Such cells taken from umbilical cord blood -- in a five to ten-minute

procedure immediately after the baby is born -- can be used to treat

diseases such as leukaemia, anaemia, sickle cell and thalassaemia. Some

experts even say they could eventually be used to help Parkinson's,

Alzheimer's and MS.

Last week, it was announced that the Department of Health is to invest

£4.2million in a 'bank' of cord blood stem cells, providing hope for

families with genetic diseases. But it has since emerged that this

£4.2million is not extra money, but simply the normal funding for the

scheme for the next two years. And for couples such as the ons,

the scheme offers little or no hope.

This is because the NHS collects cord stem cells just for families with

a high risk of a genetic disorder, such as sickle cell disease -- and

only then if their doctor considers it appropriate.

So far, 200 at-risk families have stored blood samples on the NHS. Of

these, only 13 have been used to help treat a family member.

The NHS cord blood bank also takes altruistic donations -- similar to

when people give blood -- but this is possible only at three hospitals

in the London area: Northwick Park, Barnet General and Luton & Dunstable

NHS Trusts.

Treating life-threatening diseases

The NHS cord blood bank has around 10,000 donations -- most of the cord

blood from the 600,000-plus births each year is disposed of, despite the

fact new research has shown its value in treating life-threatening

diseases.

Professor Colin McGuckin, professor of regenerative medicine at

Newcastle University, is working on using umbilical cord stem cells to

repair heart tissue.

" Our research shows that cord blood has amazing capacity to develop into

a wide range of human tissues, including blood, blood vessels, liver and

nerves, " he says.

" It could not only have a huge impact on treating human disease, but

also provide human tissue for drug development and testing, removing the

uncertainty of whether new medications will have side-effects. "

His team is the first in the world to produce embryonic-like cells from

cord blood, and is developing a range of treatments for liver complaints

that could be in use in five years.

Professor McGuckin believes prospective parents should be encouraged to

bank their baby's cord blood, ideally for the general good through a

public bank. But there are not the facilities nationally to make this

possible.

He sees nothing wrong if parents use a private bank " as long as it is

properly run and accredited " .

Some experts say the likelihood of a child needing their own stem cells

is one in 20,000, but a Dutch study shows that over the course of a

lifetime, the chances of a person requiring a transplant from their own

cells is one in 400.

As for the question of whether these cells can be stored and remain

useful, a study by the Indiana University School of Medicine found cord

blood stem cells could be retrieved after at least 15 years.

An estimated 11,000 parents in Britain have paid to have stem cells

taken from their baby's cord blood and frozen for possible future use --

the ballerina Darcey Bussell and footballer Thierry Henry reportedly

among them-- even though, in many cases, there is no known risk of

disease to their children. Globally, the figure is around a million.

Private cord stem cell banking is not cheap. Future Health Technologies

in Nottingham -- the only private bank in Britain accredited by the

regulatory body, the Human Tissue Authority -- charges £1,250 for

processing plus £300 to store cells for 20 years.

But even if parents can afford to bank stem cells, they can face

difficulty arranging to have it done.

on, 33, a former financial consultant, first heard about

cord blood stem cells when doing her own research into multiple sclerosis.

She asked her MS consultant about having her baby's cells removed and

stored, but was told this would be considered only if she had leukaemia.

Then the head of midwifery and the clinical director at her maternity

hospital, the Princess of Wales, Bridgend, told her it was not hospital

policy.

Her MP Madeleine Moon raised the issue in the Commons in March, and a

few weeks ago Mrs on received an e-mail from the deputy head of

midwifery at the Princess of Wales to say she could pay to have her own

private nurse extract and collect the blood.

" There doesn't seem to have been a change in hospital policy -- I think

it's only because I've been noisy, " says Mrs on.

So, when she goes into hospital to have her baby, her husband Neil will

have to contact an agency nurse to come to the delivery room to extract

the cord blood immediately after the birth.

Neil will also have to arrange for a courier to collect the sample and

transport it to the private bank. Mrs on's case is not unusual.

The Royal College of Obstetricians & Gynaecologists has recently warned

of the 'considerable logistical burden' on 'already over-stretched staff

', with collection of the blood being carried out during a particularly

risky time for mother and baby.

Macridis, the managing director of Future Health Technologies,

estimates that fewer than one in three hospitals are allowing new

parents to bank cord blood stem cells privately.

'An insurance policy'

However, in the public sector, the situation is slowly improving. The

NHS cord blood bank -- set up in 1996 and run by the National Blood

Service -- is considering establishing other hospitals as collection

sites.

" As these treatments increase, the NHS will become more involved and the

service enabling the banking of such cells will be expanded, " says

Rakesh Vasishtha, the bank's communications manager.

" We want to have a broader spectrum of tissue types on our register so

we can provide an equal chance of treatment to everyone who needs it. "

Such aims are laudable, but critics claim this is not enough. " Storage

and processing is expensive, so it is understandable the NHS's public

banking service is limited, " says Mr Macridis.

" But many US states not only inform but encourage parents to consider

banking. Here, the vast majority of parents get little or no advice from

healthcare professionals and have no idea how useful the blood could be. "

As on says: " It is an insurance policy for me and my

children. Every woman should have the right to that. "

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