Lessons from Sabir’s story—and the double bottom-line commitment
By Dr. Sania Nishtar
Sabir was not on his bed when I entered the ward, which gave me an opportunity to go through the case notes. He suffered from a heart disease called infective (bacterial) endocarditis, a condition in which an infection ‘somewhere’ in the body can spill into the bloodstream and form ‘vegetations’ or infected lumps on pre-existing damaged heart valves. Sabir was 24 and he may have been suffering from rheumatic heart disease (the commonest cause of damaged heart valves in developing countries) for a very long time. The condition is a sequel of an untreated throat infection in childhood caused by a specific bug, which according to the textbooks “licks the joints but bites the heart”. Left untreated the throat infection causes permanent damage to the heart valves, which in turn, become prone to infections.
In any civilized society, such a condition is generally diagnosed at the stage of a throat infection and treated; in cases where it is missed, the resulting heart condition is picked during childhood as part of school health checkups or in a subsequent physical examination, early in life. Nothing of this sort applied in Sabir’s case. School was never an option and preventive healthcare was unheard of where he lived. In countries with functioning health systems capable of screening and prevention, such cases are now history and for them to exist in our midst, undiagnosed, untreated and to present with a severe complication for the first time, tantamount to a slap on the ‘face’ of our health system. The other whack is the inability of the system to ensure financial access to healthcare for someone as seriously sick as Sabir.
After months of suffering in a remote underprivileged mountainous village of Azad Jammu Kashmir, when Sabir finally arrived in Islamabad, Pakistan’s capital city, and a place where a lifesaving operation could be performed, he found he had to pay for the two heart valves, which needed to be replaced in order for him to survive. The cost was enormous, and way beyond his reach. Thanks to the camaraderie of his relatives—an illustration of the traditional support structures of the Pakistani society—he has been supported all through his illness by this brother and cousin who accompanied him on the long and arduous journey. For the two of them, the journey, in its own right, has been a huge opportunity cost as they had to forgo daily wages, which sustained their families. The journey and the stay in hospital was all they could manage with a debt of Rs. 60,000 (US$ 600). But when it came to the cost of the heart valves, (over US$ 3000), they were simply helpless.
When I saw Sajid on my ‘day-before-Eid’ visit to the hospital, he was in extreme distress as he walked out of the washroom supported by his two attendants. He could not lie flat, his lungs were still full of fluid, even after days of diuretic therapy (water tablets); his legs were swollen up to his hips and he could not speak a sentence without getting breathless. He was desperately sick. For him the heart valves were the difference between life and death, once he stabilized—but something he could not afford.
When the SMS calling for help from the attending doctor at the Islamabad hospital came to Heartfile Health Financing asking us to support the cost of surgery, it just took us a few hours to get back to them indicating that we would over the costs fully.
Sitting in the Cardiology ward of the hospital that day—where a visit is always déjà vu for me as I served there as a Cardiology Senior Registrar for many years—I prayed his condition would stabilize so that his life-saving operation could be performed. I could only signal hope to him and his relatives who seemed exhausted caring for him but were extremely supportive and had every intention of continuing.
Sabir was on the surgical waiting list immediately after Eid but unfortunately his condition deteriorated, and he died on the second day of Eid. For us at Heartfile Financing, this is one of the cases to remind us that ensuring financial access to healthcare has its limitations in a system where huge issues plague healthcare quality and responsiveness. We have supported hundreds of similar cases where timely surgical intervention with valve replacements has saved lives and has restored people back to a better quality of life. In this particular case, both Sajid and we lost the battle—a stark reminder of the need to also tackle broader health system issues.
And that is why, in my own personal “on-ground double bottom-line” commitment to health, I try and strike a balance between practical solutions, no matter on how small on the one hand and policy advocacy for broader systemic change, on the other. The recollection of Sabir’s face is now another addition in the library of images in my mind, which continue to remind me of the need to stay on course my struggle.
Dr. Sania Nishtar is the founder and president of Heartfile Health Financing http://www.sanianishtar.info