Life had just collapsed. Zubair’s life had changed from being an active student to a helpless, weak and frail patient lying on a hospital bed in a room which he shared with three other patients, in a center for Bone Marrow Transplantation.
He was the eldest of a family of 5 on whom much hope had been placed. All the aspirations of this family were on Zubair—what they had not been able to achieve, they dreamt to achieve through this promising son. His father had a heart condition while his mother was a chronic diabetic. The family was an internally displaced victim of the 2010 floods in Pakistan and had moved from Nowshera, a city ravaged by an extraordinary deluge that year.
They had lost their home and all their belongings and moved to the outskirts of Islamabad in search of livelihood and shelter. Fortunately, they were given one-room refuge by a local estate developer; in return Zubair's, being a bright student, provided private tuition to the 4 children of the landlord. The family was content with this arrangement and paid their monthly utilities. Zubair’s father was a transport supervisor; while supporting his own family of five, he also had to support his elderly father, divorced sister, a disabled brother with his spouse and minor children—all of them in his ancestral remote village.
Zubair’s illness started with fever, bruising, and dizziness, shortness of breath and extreme fatigue. Along with rapid deterioration came a diagnosis of acute myeloid leukemia, a form of blood cancer. A five-day bill at the Islamabad hospital, initially, cost the family PKR. 85,000 (around $US 750). He was then moved to a specialty hospital in another town, which cost his father, another PKR 20,000, where he was informed that “they only treat patients under the age of 19 for bone marrow transplant” and were thus, turned away. He moved from hospital to hospital until landing in a Bone Marrow Transplantation Unit; by then the family had incurred a loan of PKR 500,000, an amount which they had to deposit for the treatment to be initiated. He was being given chemotherapy to kill the cancer cells and blood transfusions to keep him alive.
The reality was harsh. To be blunt, it all came down to money. Each investigation and cycle of chemotherapy equated with more debt. The approximate cost of the Bone Marrow Transplantation treatment would range around PKR 4 million. This amount was beyond their wildest imagination. The family had fought every battle seeking cure of the cancer and had already become heavily indebted in the process. Zubair had given himself a death sentence.
When Heartfile began raising the money for his treatment, we were faced with a dilemma, the sum of PKR 4 million could have been set aside for treating and definitively “curing” many patients. Here there was little hope of cure. It was a difficult decision, but we decided to support part of the expensive treatment. As long as there is life, hope is to be maintained.
The cancer journey for Zubair’s had been a brief one and very painful. They had remained in a state of intense shock, disbelief and confusion until the night prior to Zubair’s death. The mother said that she still wakes up every morning thinking it is just a bad dream, but soon she realizes that her world has fallen apart. All around her are enlarged photographs of a healthy and vibrant Zubair. To her, these are a painful reminder of what she has lost. To us, these pictures are a reminder of how NCDs ravage families and multiply misfortunes and the manner in which health systems fail to provide financial risk protection.
I feel privileged to volunteer for an organization that is setting up a system to overcome the critical financial access barriers to healthcare.
Mariam Mehdi volunteers for Heartfile Health Financing