Hi, my name is Sabiha Khan, and I am from New Delhi, India. I was a caregiver to my son who was living with bone cancer.

I'm sharing my story because I want financial equity for the treatment of all conditions.

Written Diary

20 December 2023

My journey as a caregiver to my son living with cancer

In April 2020, during the COVID‑19 pandemic, my son developed an unusual swelling on his leg and was eventually diagnosed with bone cancer. It was difficult for me as a mother to see him suffering, and the stress took a significant toll on my health as well. Along with taking care of him, I prayed daily for his health and well being.

Due to COVID-19, we faced delays in getting medical reports, difficulty in accessing medicines and the need for constant COVID‑19 tests due to frequent travel to the public hospital, which increased our costs. The cost of medicines and chemotherapy were also too high for us, and we didn’t have health insurance as we couldn't afford the insurance premium. When my son was moved to a private hospital, we came to know about a pharmacy waiver card provided by the hospital, which gave us a percentage discount on the pharmacy products, based on our annual income. However, the benefit was very little compared to overall treatment expenses.

Along with financial difficulties, my son’s health kept worsening. With heavy medication and chemotherapy, he lost almost fifteen kilograms. The doctors then advised the amputation of his leg, so we shifted him to another multi-speciality private hospital. I sold most of my assets and used my savings to provide the best treatment available. I still vividly remember telling my son in the ICU after his amputation, that this would not affect his life.

In April 2021, the doctors informed us that chemotherapy was no longer required and asked us to repeat X-rays every three months. My whole world came crashing down after the third X-ray, when doctors told us that the cancer had spread to his lungs and treatment would no longer help him. We travelled to Mumbai to consult an oncologist in another cancer hospital. There also, doctors revealed that treatment would not help anymore, and guided us to take him home and care for him there. They said if we had brought him earlier to Mumbai for diagnosis he might have survived. We went to four hospitals in two cities, but even after all our efforts and prayers, I could not save my son.

As a caregiver for my son, I felt the pain and fear he struggled with. I share my story today with the hope that voices like mine will be heard and stronger actions will be taken to strengthen equitable access to care for people living with NCDs like cancer.

Written Diary

1 February 2024

Shared inequities

People like me with moderate incomes must usually bear the brunt of expensive diagnostic procedures, treatment and medication for chronic conditions like cancer. I would like to share one such unfortunate incident. One of my relatives suffering from chronic kidney disease and intestinal issues was moved back to a government hospital, after prolonged treatment in a private specialised hospital, due to financial issues. Sadly, he was diagnosed with intestinal cancer and passed away. I think the treatment and wellbeing of patients should be the main priority of our healthcare system. Irrespective of their financial capability, individuals should have access to quality healthcare services.

Along with this, a lack of awareness regarding the risk factors, signs, and symptoms of NCDs puts every one of us at greater risk. There are certain stages of cancer that we were unaware of. I did not know at first that the swelling and pain that my son experienced was due to cancer. Recently I came across another incident where one of my neighbours was diagnosed with end stage breast cancer. In her case, there was a stigma attached with breast cancer, such as fear of cancer being contagious, and fear of isolation within her family and community. This led to a delay in my neighbour seeking treatment. Due to limited knowledge of the severity of disease and fear of isolation, she took medications from traditional healers which was not effective for breast cancer treatment.

With my experience of dealing with my son’s cancer I advised my neighbour to go and see a doctor, following which she was clinically diagnosed. I strongly feel that the fear and stigma related to cancers, especially breast cancer, results in a delay in seeking treatment.

Caregiving responsibilities for chronic conditions like cancer include assisting with daily activities, providing transportation, managing medications, visiting multiple doctors for different opinions, and repeating several tests. I feel every caregiver goes through powerful emotions like anxiety, anger, fear, denial and despair throughout this journey with NCDs. All these experiences usually lead to physical and mental exhaustion. It is a daunting task for the caregivers to maintain a balance between their own health and the health of their loved ones. Caregivers and people living with NCDs need to be meaningfully involved in their own healthcare related decisions. This will enable us to express our opinions about different available treatment options and to advocate for a more person-centred healthcare system.

Written Diary

14 February 2024

Bridging the gap for people living with NCDs and their caregivers

One of the greatest challenges that we face while navigating the healthcare system is the fragmented referral system which leads to delays in seeking care. I firmly believe that an effective referral system is essential to ensure more equitable access to diagnosis and the full continuum of NCD care at different levels of the health service, irrespective of socioeconomic status. This is why I put forward my request to the government to strengthen referral systems and ensure timely access to care.

Limited health literacy among communities hinders the effectiveness of existing awareness campaigns. There is a widespread lack of awareness regarding signs and symptoms of NCDs which contributes to delays in treatment seeking. Sometimes we do not understand awareness messages either because of language barriers or due to the use of difficult words and terminologies. This is one of the main reasons why significant misconceptions and stigma related to NCDs, especially cancers, still exist.

Another key ask is for the government to strengthen the preventive aspect of cancers by conducting health education and awareness programmes and ensuring effective community level implementation. Ayushman Arogya Mandir Health Melas (Health Fairs conducted under Ayushman Bharat, a flagship programme in India to provide an expanded range of primary health care services) can be leveraged to further increase awareness.

Involvement of caregivers and patients in NCD care is crucial as their experiences affect the choices, expectations, and preferences for future encounters with the health system. To create a responsive and person-centred health system, there is a need to include perspectives of caregivers and understand their experiences. Hence, I urge state governments and healthcare professionals to include caregivers in decision-making and build their capacity to contribute to the organisation and planning of care, and discussions related to quality of care and access.

NCD Diaries

As a caregiver, I wish that no one has to go through the trauma of losing a loved one. I want that there should be financial equity in treatment for both the rich and the poor to ensure inclusivity under Universal Health Coverage (UHC).

Sabiha Khan, lived experience of cancer, India


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