Recently doctors in Chennai have successfully transplanted a child with cancer from his mother's stem cells in the first Haploidentical transplant of the country. This news definitely brings cheers to the numerous families who are suffering from one or the other disorder that can be cured only by transplants. In India, it is extremely difficult to find a donor for a person who needs a transplant because of the very limited number of people who have enrolled so far in bone marrow registries. I too feel very happy about the fact that such transplant being done in Chennai today means that in a few years time several patients who would otherwise not be able to find a completely HLA matched donor would have hope. Nevertheless, the central problem in our country, contrary to what is common belief is not that of a match but that of access to transplants.
In November 2012, Sankalp India Foundation got together with Cure2Children Foundation, Italy to offer free HLA typing to 15 families coming to Indira Gandhi Institute of Child Health for thalassemia management. Each of the kid who needed a transplant had at least 1 sibling and all of them were eligible for transplant based upon the preliminary screening criteria. The reports which came a month later showed that 5 of these families had matched siblings. Since December 2012, we have 5 families who have a matched donor and a child needing transplants. In spite of the matches, nothing has proceeded in the direction of transplants because of the enormous expenses involved in getting the procedure done. Out of 15 children who needed a transplant, a third found a matching sibling and yet transplants did not happen. This is true for numerous children across the nation.
The problem in our country as of date is that of access to transplant both in terms of number of centres available for transplantation and in terms of costs involved. Most transplant units are run by corporate hospitals and they charge enormous sums of money. Just last week I received a mail from someone who was planning to take his child for transplant at a very well known hospital. The cost of the transplant was quoted to be Rs. 30 lakhs. The very few centres which are there in Government hospitals have extremely long waiting lists and even there the cost of transplants has not been less than 15 lakhs or more (including the follow-up medicine and investigations). The exorbitant costs of transplant make them out of reach of most of the Indians.
The current status of bone marrow registries is also very disturbing. There are hardly a couple of 10s of thousand people registered in these registries. This is not because of lack of awareness. There are institutions which have claimed to enrol numerous stem cells donors but who are yet to do the HLA typing. The problem there again is that of cost. With a low resolution HLA typing costing around Rs 2500/- to most institutions, the cost of doing the typing and enrolling people in immense. Still there is no organised support for HLA typing from the Government or institutional donors and thus whatever little typing is being done, either the extremely philanthropic donors who enrol themselves in are covering for the cost themselves or the cost is being recovered from the patients. A recent quote showed Rs. 10 lakhs as the cost of stem cells that a well known stem cells registry was charging the patient's family. This in spite of the donor giving his/her cells in a non remunerative manner - completely voluntarily. Thus, whatever is available through the marrow registries too is also accessible to the creamy layer of the society alone.
While the problems are numerous, there is no dearth of promising solutions as well. A recent development in a relatively unknown centre in Jaipur sparks hope in the lives of the numerous people can't go for transplants simply because of affordability. This centre is committed to delivering state of the art tertiary healthcare in a professionally competent, nevertheless, non-profit setting. South East Asia Institute for Thalassemia has done excellent work in offering BMT to relatively low risk category patients with thalassemia at a cost which is 1/4th that of the corporate. At a cost of about 12,000 USD, the centre is conducting BMTs with medical outcome at par with the finest centres in across the world. Thus, if several more centres which work on non-profit lines, including only scientifically proven and significant costs to the transplants, come up across the nation, the number of BMTs and consequently the number of children helped with rise dramatically.
The second solution is the logical extension of the first. If we do conduct enough bone marrow transplants at a relatively lower cost, the chances of convincing the Governments that it might be logically the better step to cover for the costs of transplants. This holds good especially for diseases like thalassemia where the cost of management for few years (which partially is borne by the Government) could be all that is necessary to offer a permanent cure. A real world example would be the Rajasthan Government which has committed itself to fund at least 20 transplants at SEAIT encouraged by the effectiveness of what is being done and the costs at which it is being done.
In specific when it comes to stem cell registries, there is an urgent need for Government to fund the HLA typing of the willing potential donors. Unless the Government takes up the cost of the typing and the donor registries limit their charges to minimalistic administrative charges, such registries will address only a microscopic section of society.
The challenge faced by people in the field of transplants today is not that of enough donors available (unlike organ donation) but that of accessibility to transplants. The need of the hour is to take a look at transplants from the viewpoint of the suffering of the masses and not from the viewpoint of the potential to commercially exploit the situation. Gradually government is taking note of the issues surrounding this. It is required for the Government to create the right environment for the non-profit and scientifically driven organisations involved in transplants to grow in numbers across the nation making transplants accessible to the hundreds of thousands who wait for transplants with matched donors.