Hemophilia Care in Developing Countries – A Speech

Thisis a speech given by my sister about the problems of hemophilia care in thedeveloping world. My only claim to post it is that I helped a bit in draftingitThemost incredibly brave people I have met in my life are the persons withhemophilia I met in Indiawhile working for Hemophilia Federation (India).Imagine  ·  a life with thecertainty of periodic painful incapacitation;·  a life with asignificant probability of becoming permanently disabled;·  a life where thepossibility of being infected by Hepatitis or HIV was high considering the needfor repeated blood transfusions or contaminated factor usage and·  a life which couldbe cut short any time because of Hemophilia.Being requiredto lead such a life and managing to lead productive and cheerful lives is animpressivedemonstration of courage.My first directexposure to the bravery required of a person with hemophilia was when AshokVerma, the founder of HFI injured his one remaining leg in a car accident. Themajor bleed in that leg left him confined to bed for 3 months. Staying with himfor that period to help him out was an eye-opener to the small and largeindignities and problems that persons with hemophilia undergo periodically.Needing help every time you need to go to the restroom in a concrete housedesigned with no concept of disabled-friendliness is refined torture. If Ashok,who was relatively well-off, could not manage any better the majority of theperson with hemophilia in India must have been in dire straits. Laurie’s photographswould have shown you a glimpse of what those persons with hemophilia in thedeveloping countries go through.The requirementof extra-ordinary bravery to live with hemophilia is higher in developingcountries like India. Ashok, himself, lost his leg in the eighties thanks tothe fact that there was no appropriate treatment then for a person withhemophilia with a fractured leg. By the time he was referred to leadinghematologist Dr. Manucci there was no option left but to amputate the leg.Thanks to Dr. Manucci’s encouragement and persistence, Ashok was enthused toset up HFI. It is largely thanks to HFI and its 65 associated societies thatincidents 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 forprophylactic usage for all known persons with hemophilia. Thus, unlike in thedeveloped world, factor usage is largely done only when there is a bleed. Eventhough the government and HFI have ensured that factors are available at afraction of the cost in the developed world, the cost of factors is stillprohibitively high for most pwhs. This, in effect, means that even now bleedsare treated by some pwhs with ice and rest. Thus, one cannot entirely rule outthe possibility of children getting crippled due to lack of adequateavailability of factors, when timely usage could have enabled them to lead ahealthier life.The factors inuse in India are, by and large, human factors. Thus, the attendantrisk of contaminated blood products leading to unknown infections continues toexist. Availability of safer recombinant factors is next to non-existent,unlike in the case of the developed world. It is not sufficient to make thesefactors available. It is also necessary to make them affordable to ensure thatthey gain wider usage.There is abigger problem with regard to identification of persons with hemophilia. Theknown persons with hemophilia in India number about 15,000 whereas, going by the population of India, one should have expected a population of about 100,000pwhs. If known persons with hemophilia still face more risks in theirday-to-day life, the problems of the unidentified persons with hemophilia arebound to be multi-fold.I still rememberone of my early incidents at HFI. A six month old baby had fallen off his bedin Bhopal and gone into a coma. Since he was continuously bleedinghe 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 thefather to us. The baby survived thanks to factor treatment. Chance had favoredthis little one but I shudder to think of the various other cases where therewas no coincidental pediatrician to advise the family.Identificationof all possible Pwhs is another area where the developing world lags behind thedeveloped world. A further issue is the lack of knowledge about hemophiliaamongst doctors, which is a contributory reason for the lack of identificationof hemophilia in patients. God knows how many lives have been lost and how manychildren crippled simply because of the lack of this information!Support groupsin India have their hands full in ensuring that factors are madeavailable as inexpensively as possible as well as in ensuring the spread ofawareness about hemophilia. In fact, despite unrelenting efforts by supportgroups it has not been possible to ensure that hemophilia care centers areavailable within a reasonable distance for every pwh. This, in effect, meansthat pwhs, particularly in rural areas, have to travel sometimes for daysbefore reaching the nearest care center. Thus, it is understandable that thesesupport groups do not have enough time or resources to safeguard the rights ofpwhs by·  lobbying for improved care and quality of treatment·  support with their employers and the rest of Society.The pwhs of thedeveloped world are much better off in this regard.A pwh in thefamily can actually set back the entire finances of the family and reduce themto poverty even with all the help that support groups can extend. This is anarea where Save One Life plays a major part. Save One Life tries to ensure thatthe daily needs of the pwh are met, without cost to the family, and also thatthe pwh is enabled to lead a productive life.To illustratethe sort of work SOL is doing one can take the case of the boy from Pune, whocould now go to college thanks to SOL. When I met the father, he was sograteful for the sponsorship that made it possible for his son to become aproductive member of society. It was embarrassing for me to be so effusivelythanked for contributing what amounts to lunch money here but which had sototally changed life for a young boy in IndiaSometimes theimpact of our sponsorship is even more heart-warming. There was this boy in aslum who had lost his father. He was unable to walk and had to be carriedaround by his mother, who also had to earn money to sustain the family. Acouple of years after sponsoring this child I had the opportunity to meet thisboy again. Surgery, sponsored by the local chapter, and physiotherapy,sponsored by SOL, had enabled him to move around on crutches. The smile on hisface as he almost ran to meet us will stay in my mind forever.The biggestfrustration for us in SOL is the fact that we do not have the resources to helpout every deserving case that comes to our attention. To know how life-changinga minor financial infusion can be to the concerned person and family and tohave to turn them down due to lack of resources is one of the most depressingthings that happen to us.Much needs to bedone to narrow the gap in the lot of pwhs in the developing world vis-à-vis thedeveloped world.  Some of the more crucial things that need attention are·  Training for themedical fraternity for identification, treatment and improved care.·  Making anti hemophilic factors available that areaffordable and sometimes free of cost.·  Sponsoring persons with hemophilia to help those leadproductive lives.In the normalcourse one would expect the government of the concerned country to play a majorpart in doing what needs to be done. Developing countries, however, havemultitudinous calls on their limited finances. Thus, neither the government norlocal support groups can do all that is necessary to bridge the gap between thelot of pwhs in the developing world and the developed world. What has,hitherto, been done would not have been possible without support from theinternational fraternity. Such support in the areas outlined earlier would benecessary to enable pwhs in the developing world to lead a life of dignity thattheir courage gives them the right to lead.