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Cord blood banking in India targets parents' desires for a heathy future for their child, but it is important to distinguish the claims from the facts.
Cord blood banking in India targets parents’ desires for a heathy future for their child, but it is important to distinguish the claims from the facts.
Supriya Rao* was expecting her first baby, when she heard from her U.S based friend that she had banked her baby’s cord blood to ‘ensure’ a ‘cure’ for many future diseases for her child. Supriya and her husband were eager to book a similar healthy future for their baby against as many as seventy to eighty medical conditions, the cost of such a procedure notwithstanding.
Many expectant parents are faced with the choice of cord-blood banking, but need to know the answers to the following questions to take an informed decision.
Cord blood contains large numbers of stem cells. These are unspecialised cells which can specialise into different types, such as cells of the brain, heart, lungs, intestine, etc in our body (and are also found in the embryo and bone marrow.)
Theoretically, if one has sourced these parent cells, then one can produce any cell that one desires.
The first successful stem cell transplant was performed in 1988, from one sibling to the other for treating a rare disease called Fanconi’s anemia. At present, nearly eighty medical conditions have been identified including certain leukemias, thalassemia, neurological and muscular diseases, which could be treated with stem cell therapy.
Clinical trials are on for application in treating diabetes, multiple Sclerosis, retinitis pigmentosa and spinal cord injuries and over 130 diseases where stem cells could prove potentially beneficial.
However, at this point of time, these are merely promises and suppositions.
After the baby is born, approximately 75-150 ml of cord blood is collected from the umbilical cord, with no discomfort to the mother or child. This is transported to the banking facility and stored in a frozen state at -190 degrees Celsius.
In India, it can cost between thirty-five thousand to eighty thousand rupees to collect and store, sometimes followed by a three to five thousand rupees for annual storage charge. .
The American Academy of Paediatrics discourages banking of cord blood in private banks, unless the family has someone with a stem-cell-treatable-disease. In fact, due to unethical marketing tactics and unrealistic promises made to expectant parents, along with the uncertain nature of the research involved, countries like Italy and France have banned PRIVATEcord blood banking. Instead, these countries encourage the storing of cord blood in public banks.
In India, so far the incidence of parents opting for cord blood banking is very low, with two per 1000 babies as compared to 50 per 100 in the U.S. and 250 per 1000 in Singapore. The rate of usage in India is minimal.
Lifecell, India’s largest accredited stem cell banking company—has released only 23 cord blood units for therapy out of an inventory of 70,000 units.According to the Association of Stem Cell Banks of India, over 1.6 million units of cord blood are stored in 15 private banks..
Viability: Banks store samples for twenty-one years. No one really knows how many years the banked cord blood will be usable. So, when the time comes to use the cord blood, one MAY find that it just does have enough stem cells to be useful.
Quantity: The cord blood of a newborn, may not contain stem cells in sufficient numbers to be useful in adulthood, although some techniques are being researched to achieve this.
Limited use: In some congenital (from birth) medical conditions such as types of childhood leukemias, the stem cells in the cord blood are considered tainted or unsafe for using in treatment of the child, as the stem cells themselves may be diseased. So, the chances are that when you do need your child’s banked cord blood for stem cell therapy, the sample may not be usable for the same child.
Will it ever be used: It is extremely rare that a person’s own cord blood will be used for stem cell therapy. However, the sibling (25% match) or a close relative may benefit from the cord blood which has been stored. Often, the match is found in an unrelated person’s cord blood.
Matching: For cord blood, there is no need for a perfect match. An almost perfect match is needed; something that is usually fulfilled by another donor/s to the bank.
Incidence of successful stem cell transplant: In fact, the chances of having a successful stem cell transplant are higher when there are many donors in a particular donor registry, thereby giving more choices for matching the stem cell to the recipient. Sometimes, cord blood from more than one donor is used for stem cell therapy.
In the case of public cord blood banks, parents donate the umbilical cord blood, free of cost. This can then be used for research or for unrelated patients who are a match. Although this means that it may not be available when one needs the sample for one’s own family, the nature of stem cell transplant through cord blood storage means that one can get a near perfect match through the registry of donors.
In India, the lack of accessibility of public banks is a major issue. At present, there are only three public cord blood banks in India.
Last year, Harvard professor Nalini Ambady who was suffering from leukemia, passed away due to lack of a match for stem cell transplant. caseslike this underlines the need for a repository in India, especially due to our large ethnic diversity..
Chennai based LifeCell – India’s first stem cell banking company – has planned to set up the country’s largest public cord blood bank .
– A high-risk family medical history of disease(s) currently treatable by cord blood.
– You are optimistic about the clinical trials for cord blood therapies and future scientific breakthrough.
– A sibling has a medical condition treatable with cord blood.
– There is high risk for a premature delivery.
– You are a mixed-race couple, thereby making it difficult to get a match.
There are at least fifteen banking facilities for private cord blood banking in India, with branches in many major cities. As it is a an unregulated business, parents need to check the accreditation, years of experience, sample-numbers already stored by them, whether blood from a single donor is stored in smaller, separate containers (so that the testing for compatibility does not require thawing and wasting of the entire sample). The storage facility should have safety back-ups for power, fire and not be prone to natural disasters.
They should also have a research laboratory, clinical trial teams and facility for transplant, not just storage. One should study the fine print of the contracts and the total cost of the storage.
Banking facilities often downplay the hard facts. Added to this is the fact that it is a growing industry tapping into an expectant parents’ vulnerabilities. But the decisions need to be taken much before your baby is delivered.
One needs to remember that the uncertainties and maybes in this research are many. And that cord blood is not the medical insurance that it is touted to be.
*Names changed on request
Pic credit: Horrigans (Used under a Creative Commons license)
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