Boy with the bruised lip
By Dr. Sania Nishtar
Ali seemed very shy. He didn’t make eye contact with the Heartfile verifier—or perhaps it was his swollen and badly bruised lip, which made him conscious. Throughout the conversation between our verifier and his mother, his gaze remained lowered, as if knowing that something is terribly wrong, and that he is responsible for it. Perhaps the ‘guilt factor’ contributed to his taciturn demeanor.
Ali is old enough to understand what the mother is saying. “We were given money by our neighbors and are left with no money now to get medicines that the hospital staff wants us to purchase from the market”, she stated deeply stressed, adding “I have two children to care for, both of them sick”. One of them, luckily, the one in the lap, has a curable condition—although the child is asthmatic and needs to be nebulized in hospital, there are clear prospects of recovery and cure. The situation is not as auspicious for the other child by her side with the swollen red lip, who looks up now and then, only as if to assess what the next moment has for him. It is for his treatment that they are here, having undertaken a 500-kilometer journey, which has drained their resources, completely. The bruise on the lip is not all that the child suffers from. He has red, black and blue patches all over the body; has been bleeding from the gum and nose; and has been passing blood in his stools for the last 3 months. He is increasingly pale and terribly weak. Ali suffers from “Aplastic Anemia,” a condition related to malfunctioning of the bone marrow, the central sponge-jelly occupying big bones (Osso Bucco lovers know), which normally produces blood cells.
The family has been on the road for 2 months, roving from hospital to hospital in search of care. Finding it available yet out of reach is a devastating blow. Ali is the first child of parents who live in a mud hut in Gilgit in northern Pakistan, in a home with no electricity, no toilet, and no heating. Residents of this remote wilderness find livelihood only in summers, when the temperature is kind. Ali’s father, a van driver, thus works only 6-7 months a year and for the rest, faces enormous financial hardships to feed a family of 8. Bearing the cost of a Bone Marrow Transplantation (BMT) is an impossible prospect for him. What can be worse for a parent to see a child suffer so immeasurably and to have the realization that they will not be able to muster the finances to pay for treatment.
In Aplastic Anemia, deficiency of three types of blood cells, each with different functions, leads to many problems. Red blood cells deliver oxygen and their depletion causes fatigue and anemia; white blood cells fight diseases and their paucity makes the patient infection-prone; platelet deficiency causes hemorrhage and bruising. Without treatment or disease remission, patients inevitably die. Ali had severe reduction of all three blood cell lines, which is what explains the pallor, fever, bruising and hemorrhaging. This is a serious condition anywhere in the world and requires a robust health and social systems response. The definitive treatment is Bone Marrow Transplantation, in which bone marrow cells from a live donor are injected with the expectation that they will revive the patient’s cells. Ali’s family has finally come to a hospital on which they could pin hope—Pakistan’s tertiary care center in the capital city, Islamabad, offers BMT. But their troubles are far from over as they discover that they need 600 times their monthly salary to get their child treated. This doesn’t include the cost of commute, the foregone income and cost of sustenance whilst out of a job, for a prolonged duration, during which siblings and close relatives from faraway villages have to be hauled for tissue matching, a procedure in which donors are identified. Every journey is emotionally and financially ravaging for families.
Should children be left to die when they develop diseases which demand high-cost interventions? What advantages of citizenship do poor individuals have in a country where they pay an indirect tax on everything ranging from tomatoes and onions to water and electricity? Is it not the responsibility of the state to handhold its citizens and protect them from ravages and vicissitudes of ill-health and misfortune? Should social protection not kick in here? We need to be reminded that we live in a country where Article 38(d) of the constitution of the Islamic Republic of Pakistan makes social protection an enforceable right. The government of Pakistan has in effect, a social protection strategy which is meant to give an implementable strategic policy direction to constitutional provisions. Organizations such as the Bait-ul-Mal are in place to financially risk-protect such individuals. But these arrangements seldom come to the rescue of those in most desperate situations. Those who do secure part of the cost for treatment for their loved ones from state sources are, ironically often those that have the means to do so. This family from Gilgit has no enabling connections in Islamabad, which can help navigate a highly collusive state system of social protection targeting.
There is no state assistance for travel and food to support such disadvantaged families. This is precisely why, at Heartfile Health Financing, we have started giving grants for subsistence to the very poor for whom subsistence while on treatment is as impoverishing as treatment itself. What we do may be small, but it is strategic, and we are slowly evolving an alternative health-related social protection system for Pakistan—a fund-based system of health financing to cover catastrophic costs without which Universal Health Care can’t be achieved in mixed health systems with high out-of-pocket expenditures. In doing so, we leverage the country’s strength, its pervasiveness of mobile phones, internet connectivity, and its national repository of poverty data. We hope to deepen its footprint slowly but surely.
Heartfile Health Financing aims for quick and transparent targeting of social protection funds. In Ali’s case, we at Heartfile were alerted so that the child’s diagnostic work up (a range of blood tests, x-rays, etc.), leading up to BMT could be financed and we accepted the responsibility. Through innovative public-private partnerships with private hospitals, Heartfile has access to such patients and we are fortunate and privileged enough to be able to help them. But bearing the cost of the diagnostics, which lead up to BMT is just one aspect of the suffering we can alleviate. The distress of the family is immense.
Dr. Sania Nishtar is the founder and president of Heartfile Health Financing http://www.sanianishtar.info