It is one thing if a person dies of an incurable disease. It is another thing if a person dies in spite of medical expertise being available to save him and yet some other constraints preventing the treatment from getting through.
We lost a patient last week. He was an 18 year old boy, the eldest among 4 siblings and the only breadwinner for his family. He died, and along with him died the hopes of a happy future for the entire family. The family invested whatever they had to save him and today stand heavily indebted. There are some important aspects that came forward in this particular case that makes us write about it.
It is one thing if a person dies of an incurable disease. It is another thing if a person dies in spite of medical expertise being available to save him and yet some other constraints preventing the treatment from getting through.
We lost a patient last week. He was an 18 year old boy, the eldest among 4 siblings and the only breadwinner for his family. He died, and along with him died the hopes of a happy future for the entire family. The family invested whatever they had to save him and today stand heavily indebted. There are some important aspects that came forward in this particular case that makes us write about it.
The problem , the treatment and the cure
PROBLEM:
The boy was suffering from Aplastic Anemia. In simple man's language you can say that his body did not manufacture blood cells at all. He was being treated by very qualified doctors in a very highly competent environment - almost the best one could get in Karnataka.TREATMENT:
Since no blood cells were being produced by the child he needed huge supply of blood externally to keep him going. Daily 1 platelet apheresis was requires with other blood components in need as well. Apheresis almost costs Rs 7000/- Together with the very strong antibiotics (since he had no immunity of his own he had to be given strong drugs to suppress infections), the tests and hospital charges, the family was paying about Rs 20K every day to keep him going.CURE:
He could have walked out of the hospital perfectly well to live much longer. Treatment is available. He required a donor with matching HLA type to be able to receive stem cells which could have regenerated his bone marrow. Unfortunately, in India, the bone marrow registry is very limited. Hardly anyone here even knows about HLA typing. Each HLA test costs Rs 10K. And the chances of finding a matching donor are very little. Imagine this poor family who had sold all they had to get treatment for their child getting innumerable HLA typing done! The doctor was struggling hard to find a match but none was found before it was too late.
Other Startling Aspects:
In the duration of stay at the hospital the child was given 55 platelet apheresis. Imagine! They found 55 people who came forward to give platelets for them. Most families struggle to find a single platelet donor. Imagine the amount of struggle these people and the people who were helping them must have gone through to get 55 donors!
Most donors may never donate platelets again. Inspite of the fact that 55 great Samaritans came forward to help this child, and thereby, crossed the mental hurdle of donating platelets, it is very difficult to see them as regular platelet donors. We at Sankalp got to hear about this request very late. But when we went for the first donation we came across much unexpected situations. The machine that the blood bank was using was a double prick machine which is very much more uncomfortable for the donor compared to the standard apheresis machines. As it is very few people come forward to donate platelets. With this, if people have a more painful experience in the first time then they may never come back to donate platelets.
The blood bank exhibited a good degree of unreason ability from a donor's viewpoint. The donors were made to travel huge distances just to get them tested. Then they were called the next day to donate if the count was good and also with a precondition of coming to donate in office working hours. However, the cost at which the blood bank was providing platelets to this person was so low that there was no option to try another blood bank.
Why are we telling you this?
We have been hit hard! Our emergency team volunteers work closely with patients in order to ensure that they get the best possible advice. This blood request has opened a Pandora’s box for us. Some open questions for us are:
Is there a need for a special strategy to provide blood to the people who need stem cells transplant?
Can something be done to increase the number of stem cell donors?
Can we work proactively with this hospital to streamline their processes to be more donors friendly and ensure higher donor retention?
How should be increase the size of the voluntary platelet donor database?
What can we do to make available blood components at the lowest possible price to patients who need high number of transfusions?
Should Sankalp organize awareness campaign to aid stem cell banking?
How should we educate and inform our emergency team volunteers to be able to help the patients in a better way in such blood requests.
We will be closely working on each of the above questions and sharing the answers with you wherever applicable. we can't do it like a five year plan. The same day as the day we got donation organized for this patient, we had another request from a person suffering from Aplastic Anemia. This morning we got to know about a lady looking for a donor to cure her AML Blood Cancer. We need your help at times. If you can, please ensure that you are part of our emergency donor databases. You will be called to help in such cases. If you think you want to help in any other way, do write to us.
We have lost this boy. But we wish our emergency team "blood sweat and tears" - we wish them all that it takes to fix things the best they can while they work the answers to the above questions.
Note: The aim of this article was to highlight the problem rather than the individuals or the institutions. Therefore the names and direct references have been suppressed.