The Diwali Lamp

It is Diwali today . The first day of Diwali. As I light the single earthen lamp set in the middle of my rice paste Rangoli that I have made at our doorstep , I pray for all good things and hope my family and friends will remain blessed always . 

For over fifteen years now I have another family that I pray for too every Diwali . 
Well , all the time actually . I guess I pray for everyone , every day , not just on Diwali day , to remain blessed . We all do that . But Diwali is special . And Diwali prayers therefore very special too . After all, it is the lamp we light on Diwali that dispels darkness and brings light into our lives . 
And this Diwali , my prayers for that other family , are extra special . They need all those prayers and more . They are on life long therapy for a life threatening leukaemia and come from all corners of our vast country and most of them from the lowest socio economic strata . I pray for their continued well being all the time . 
While some of them have access to the life saving therapy through an access programme we help manage and administer , many others are dependent upon certain programmes under various State Government schemes .

I met a few of these patients at our recent support group meeting in Chennai . 
It was very distressing to hear of their struggles and the challenges they faced. 
Let me tell you the story of one elderly lady who needed to be brought to her treatment centre once a month in order to collect her 30 day supply .

This meant traveling from her distant village with a family member ; she obviously cannot travel alone . It meant a minimum stay of at least two if not three days stay in the city . The procedures and paper work to apply for the government supply quota took time as did the consultation with her oncologist . If you have been to an OPD on any given day at any public or even private hospital for that matter you will
appreciate and understand their predicament . 
It meant finding a place to stay , organising food and the commute to the hospital 
and back . All this in a busy , bustling and unfamiliar city  . Her son who accompanied her was the only one who could help her get all the paper work done , and of course he was also the only earning member of the family and taking this time off every month had put his daily wage earner job at great risk . Not only was he certain to lose his job but would not be able to find another one . Because she said with tears streaming down her face , as soon as we go back , it will be time for us to come back and do all of this all over again . What would happen to their family in the village . She was ready to forgo her treatment and put her family out of
this misery . 
More patients came up to me with similar tales of the utmost difficulties they were facing in order to make these frequent trips and coping with all the related logistics . One of them recounted a harrowing visit when there was no supply and all their efforts to get to the city and hospital was in vain . I had heard of the same problem in far away Gauhati where the doctor told me the patients would simply stay away and not make even the feeblest effort to either stay back or make other arrangements to procure the drug from elsewhere . They had absolutely no money for any of these efforts she had told me and would simply go back to their distant village and she would never see them again . 
 
Till maybe their condition had deteriorated so much and they would finally make it to her OPD. When it was too late and the disease had progressed . 
I am afraid the story is no different in any of the other states be it Gujarat or Rajasthan or Orissa or Bengal. It is the poorest of the poor who are eligible for this support from the government which is erratic at best and they are the ones who barley have the means to travel and benefit in a sustained fashion. 
Certain unexpected circumstances have put in jeopardy the future of the hitherto uninterrupted access programme that brought to thousands that therapy at no 
cost and within the easy and efficient structure we created . It seems possible this above scenario is what awaits many more thousands of patients in the near future. Can you wonder why my Diwali prayers are so much more fervent than ever ? 
I cannot let the darkness engulf these patients . Nor those who are already struggling . My prayers this year are stronger . May this Diwali truly , truly bring the light of compassion and understanding to those who have the power to grant the gift of life to these thousands of patients. May the little lamp light their path to do the right thing by these patients whose very life will be snuffed out otherwise . 
  

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