Jayanthi Natrajan

Augest.31 : Here are some facts some of which are well-known and others not quite public knowledge. All of us are aware that the population of our country is well over one billion. Many are aware that there are probably 10,00,000 reported births every month, but certainly only a miniscule percentage of us will know that every year, we have about 1,00,000 children with blood cancer and 10,000 with thalassemia. For the parents of these children these are not mere statistics but painful and living reality. In the chaotic pace of our daily lives and the riotous crises of politics and governance, the daily trauma of our civil society and even the ordinary drudgery of the day-to-day grind, it is easy to forget or ignore that there live among us these families who are in terrible pain and who deal with the brutal reality of seeing their young children waste slowly away from the ravages of blood cancer or thalassemia.

When news reports of children requiring blood donors or of indigent parents requiring financial help to save a loved one appear in the morning daily, most sensitive persons would read it with sympathy. Some might even go the extra mile and take steps to help the suffering family. However, it is all too rare that as a collective society or even as public policy, we come up with really innovative and incredibly useful initiatives which will bring light and hope to the lives of thousands of families. That is why I was moved and impressed with the initiative undertaken by a non-profit organisation called Jeevan headed by Dr Srinivasan, who has come forward to take the message of the incredible benefits of harvesting cord blood or the blood from the placenta and umbilical cord.

In a country where there are 10,00,000 reported births a year, umbilical or cord blood is a resource that is a very precious and yet available resource to harvest. When this is harvested and properly stored, it can be used through stem cell medicine to treat children with blood cancer and thalassemia. The success rate of this treatment is over 80 per cent. It has the potential to bring hope and cure to literally thousands of families with sick children. And yet, this is something which is not particularly well-known or discussed in the public domain. It is ironical that our TV channels and newspapers beam daily about swine flu but simply do not find the TRPs of reporting on issues such as umbilical cord blood banking that is rewarding enough to give it the importance it deserves.

To be fair, nor do lawmakers like us or those in the field of health policy making or other stakeholders give such issues the primacy they deserve. More importantly, budget allocation. The prospects and the compulsions are stark and striking. Cord blood, which is plentifully available in India, is, in brief, a precious and astonishingly effective medical resource which can not only cure children suffering from blood cancer or thalassemia, but also prove effective treatment in about 70 other diseases, including and particularly diabetes and heart diseases.

When we stop to consider that India is the undisputed diabetes capital of the world and will soon be home to the largest number of diabetics in the world, as also the largest number of patients suffering from heart disease, it would be nothing short of criminal if our public policy, particularly our health planning, does not seriously consider the huge advantages of cord blood harvesting and its storage to help cure the large number of children suffering from cancer, diabetes, heart disease and all the other diseases that have the possibility of being treated with cord blood.

At this point in time, the cost of harvesting cord blood from one birth would be about Rs 30,000, including the storage of the harvested blood for 21 years at proper temperatures and in the prescribed fashion. Jeevan estimates that it would be essential to have a minimum of 30,000 stored units in order for needy patients to have a good chance of finding a matching donor. Jeevan has so far succeeded in harvesting and storing just over 100 units and the way ahead is rather long.

It is in this context that our policy planners need to think about the imperatives of establishing public-private partnerships in initiatives such as this. In terms of finance, while corporates can and do pitch in to help, in terms of the prohibitive cost, meaningful impact can only be achieved if the government becomes a stakeholder in such projects. These projects are meant to benefit every section of society irrespective of caste, creed or income. In other countries, families who have the wealth and the knowledge to make use of this technology take steps to store cord blood units.

However, ordinary families in countries like ours have neither the money nor the knowledge of the science to initiate or have access to miracles such as stem cell treatment. In a country where cord blood is plentiful and the technology and expertise freely available along with the services of organisations which are prepared to make the treatment and benefits available to ordinary citizens, free of cost or at affordable cost, it becomes morally incumbent upon decision-makers to do everything in their power to invest in such worthy initiatives and ensure that public health money is spent upon an eminently worthy cause.

Needless to say that when government creates a public-private partnership or if only private players or NGOs are in the field, great care will have to be taken to ensure that those who are requested to donate cord blood be made aware of their rights and give their informed consent.

Although their blood may be used to save other lives, it is still vital that their donation is willing and informed since, as past experience has shown, it is all too easy for innocent donors to be exploited. In the ultimate analysis, while patients should benefit, the rights of donors should never be violated.

Jayanthi Natarajan is a Congress MP in the Rajya Sabha and AICC spokesperson.

The views expressed in this column are her own.

Jayanthi Natarajan