India aims to achieve universal access to healthcare by 2030. What challenges lie in the way?
For the past six months, I have been talking to patients with oral cancer, trying to understand why in our country oral cancer is diagnosed mostly at an advanced stage. Oral cancer is the second leading cancer in India and the leading cause of cancer in Indian men. In the early stages, its treatment is not only cheaper and shorter but also has a better outcome. However, nearly 2 in every 3 oral cancers is diagnosed at a locally advanced stage.
I have heard countless stories of struggles from patients and their relatives. However, today’s story highlighted a struggle that I have never heard or seen anyone experience.
A 65-year-old man, Mr Singh, walked into the OPD to see the doctor to get clearance for his next dose of chemotherapy. Mr Singh was suffering from stage 4 oral cancer. His wife, a 60-year-old frail woman, was accompanying him. They had traveled one hour by bus to get to the hospital. “My ticket is free on the bus but his ticket costs 50 rupees for one way,” Mrs Singh told me as I began to understand their struggles.
Mr and Mrs Singh had two sons. However, both sons had cut contact with the parents. While one son lived in Rajasthan, Mrs Singh had no idea where the second son lived as they had not spoken in years. Lack of support from their sons intensified their struggles. “My husband was a driver and was very active. He used to earn 15 to 18 thousand rupees per month. We were living a good life till 6 months ago when he was diagnosed with cancer. For the past 6 months he has not been able to work,” told Mrs Singh.
With a debt of 250,000 rupees to pay, the old couple struggled even to get enough food to eat. “Our neighbors help us and give us money to come to the hospital. An NGO gives us some ration every month. Occasionally he gets hungry while waiting in the hospital and I have to buy juice for him as he can’t eat anything. Sometimes I don’t have the money to buy that either.” - Mrs Singh.
These stories of struggle were similar to what I had heard from others suffering from the same disease. Lack of money, no family support, and old age often make living with cancer worse than it should be. Most people who get diagnosed with oral cancer are poor to begin with, but the financial impact of seeking cancer treatment makes even getting a meal per day challenging.
When Mr Singh visited the hospital the first time, the disease was at stage 2. However, now, 4 months later, it had progressed to stage 4. Despite receiving multiple treatment dates, Mr Singh was not able to start his treatment due to his native house getting destroyed due to Rajasthan’s Biparjoy cyclone. However, while I was going through his file, another reason for the delay caught my attention.
“The patient was not willing to get admitted and so did not receive all the chemotherapy drugs that were planned,” read the doctor’s note.
I thought to myself, why would they not get admitted, why would they further delay appropriate treatment even after reaching the center, even after knowing that the cancer is progressing? Fighting the instinct to blame the patient for non-compliance, I decided to investigate instead.
“The door of our house is broken and we can not lock it from the outside,” said Mrs.Singh, further confusing me. “They sell liquor on the street where we live. When we leave the house to go to the hospital, drunk people break into our house and steal our stuff. I have asked my neighbor to look after the house for now. If he gets admitted, both of us will be in the hospital. During that time all our stuff might get stolen.” she continued, and clarity finally dawned on me. “ But we have no option now,” she sighed. “He is in too much discomfort. We will ask the doctor for a date for admission for his treatment.”
An open unlockable door - a triviality most healthcare workers and researchers would not have even thought about, stands in the way of lifesaving treatment for Mr.Singh. Just chemotherapy did not hold the answer to his good health. Poverty and social isolation, as always, tipped the scale even when free treatment was available.
I consider the innumerable open doors that stand unconsidered, blocking access to healthcare for too many people, and wonder if universal access to healthcare is a dream too far away to be realized.
Edited by Christianez Ratna Kiruba.
Image by Janvi Bokoliya.
