This is a speech given by my sister about the problems of hemophilia care in the developing world. My only claim to post it is that I helped a bit in drafting it
The most incredibly brave people I have met in my life are the persons with hemophilia I met in India while working for Hemophilia Federation (India).
· a life with the certainty of periodic painful incapacitation;
· a life with a significant probability of becoming permanently disabled;
· a life where the possibility of being infected by Hepatitis or HIV was high considering the need for repeated blood transfusions or contaminated factor usage and
· a life which could be cut short any time because of Hemophilia.
Being required to lead such a life and managing to lead productive and cheerful lives is an impressive demonstration of courage.
My first direct exposure to the bravery required of a person with hemophilia was when Ashok Verma, the founder of HFI injured his one remaining leg in a car accident. The major bleed in that leg left him confined to bed for 3 months. Staying with him for that period to help him out was an eye-opener to the small and large indignities and problems that persons with hemophilia undergo periodically. Needing help every time you need to go to the restroom in a concrete house designed with no concept of disabled-friendliness is refined torture. If Ashok, who was relatively well-off, could not manage any better the majority of the person with hemophilia in India must have been in dire straits. Laurie’s photographs would have shown you a glimpse of what those persons with hemophilia in the developing countries go through.
The requirement of extra-ordinary bravery to live with hemophilia is higher in developing countries like India. Ashok, himself, lost his leg in the eighties thanks to the fact that there was no appropriate treatment then for a person with hemophilia with a fractured leg. By the time he was referred to leading hematologist Dr. Manucci there was no option left but to amputate the leg. Thanks to Dr. Manucci’s encouragement and persistence, Ashok was enthused to set up HFI. It is largely thanks to HFI and its 65 associated societies that incidents like Ashok’s loss of his leg have reduced, at least in Indian cities.
Reduced, yes, but not entirely eliminated. Factor availability in India is still not sufficient to ensure availability for prophylactic usage for all known persons with hemophilia. Thus, unlike in the developed world, factor usage is largely done only when there is a bleed. Even though the government and HFI have ensured that factors are available at a fraction of the cost in the developed world, the cost of factors is still prohibitively high for most pwhs. This, in effect, means that even now bleeds are treated by some pwhs with ice and rest. Thus, one cannot entirely rule out the possibility of children getting crippled due to lack of adequate availability of factors, when timely usage could have enabled them to lead a healthier life.
The factors in use in India are, by and large, human factors. Thus, the attendant risk of contaminated blood products leading to unknown infections continues to exist. Availability of safer recombinant factors is next to non-existent, unlike in the case of the developed world. It is not sufficient to make these factors available. It is also necessary to make them affordable to ensure that they gain wider usage.
There is a bigger problem with regard to identification of persons with hemophilia. The known persons with hemophilia in India number about 15,000 whereas, going by the population of India, one should have expected a population of about 100,000 pwhs. If known persons with hemophilia still face more risks in their day-to-day life, the problems of the unidentified persons with hemophilia are bound to be multi-fold.
I still remember one of my early incidents at HFI. A six month old baby had fallen off his bed in Bhopal and gone into a coma. Since he was continuously bleeding he was put on a shunt. The family transferred him to a major hospital in Delhi, where the doctors were intending to operate on him. Luckily a pediatrician known to the family suspected hemophilia and sent the father to us. The baby survived thanks to factor treatment. Chance had favored this little one but I shudder to think of the various other cases where there was no coincidental pediatrician to advise the family.
Identification of all possible Pwhs is another area where the developing world lags behind the developed world. A further issue is the lack of knowledge about hemophilia amongst doctors, which is a contributory reason for the lack of identification of hemophilia in patients. God knows how many lives have been lost and how many children crippled simply because of the lack of this information!
Support groups in India have their hands full in ensuring that factors are made available as inexpensively as possible as well as in ensuring the spread of awareness about hemophilia. In fact, despite unrelenting efforts by support groups it has not been possible to ensure that hemophilia care centers are available within a reasonable distance for every pwh. This, in effect, means that pwhs, particularly in rural areas, have to travel sometimes for days before reaching the nearest care center. Thus, it is understandable that these support groups do not have enough time or resources to safeguard the rights of pwhs by
· lobbying for improved care and quality of treatment
· support with their employers and the rest of Society.
The pwhs of the developed world are much better off in this regard.
A pwh in the family can actually set back the entire finances of the family and reduce them to poverty even with all the help that support groups can extend. This is an area where Save One Life plays a major part. Save One Life tries to ensure that the daily needs of the pwh are met, without cost to the family, and also that the pwh is enabled to lead a productive life.
To illustrate the sort of work SOL is doing one can take the case of the boy from Pune, who could now go to college thanks to SOL. When I met the father, he was so grateful for the sponsorship that made it possible for his son to become a productive member of society. It was embarrassing for me to be so effusively thanked for contributing what amounts to lunch money here but which had so totally changed life for a young boy in India.
Sometimes the impact of our sponsorship is even more heart-warming. There was this boy in a slum who had lost his father. He was unable to walk and had to be carried around by his mother, who also had to earn money to sustain the family. A couple of years after sponsoring this child I had the opportunity to meet this boy again. Surgery, sponsored by the local chapter, and physiotherapy, sponsored by SOL, had enabled him to move around on crutches. The smile on his face as he almost ran to meet us will stay in my mind forever.
The biggest frustration for us in SOL is the fact that we do not have the resources to help out every deserving case that comes to our attention. To know how life-changing a minor financial infusion can be to the concerned person and family and to have to turn them down due to lack of resources is one of the most depressing things that happen to us.
Much needs to be done to narrow the gap in the lot of pwhs in the developing world vis-à-vis the developed world. Some of the more crucial things that need attention are
· Training for the medical fraternity for identification, treatment and improved care.
· Making anti hemophilic factors available that are affordable and sometimes free of cost.
· Sponsoring persons with hemophilia to help those lead productive lives.
In the normal course one would expect the government of the concerned country to play a major part in doing what needs to be done. Developing countries, however, have multitudinous calls on their limited finances. Thus, neither the government nor local support groups can do all that is necessary to bridge the gap between the lot of pwhs in the developing world and the developed world. What has, hitherto, been done would not have been possible without support from the international fraternity. Such support in the areas outlined earlier would be necessary to enable pwhs in the developing world to lead a life of dignity that their courage gives them the right to lead.