The Curse of lineage
Updated: Aug 31, 2018
By Bismha Nayyer
Hemophilia is an inherited (genetic) blood disorder in which blood doesn’t clot normally due to the deficiency of clotting proteins (clotting factors) such as factor VIII and factor IX. This X-chromosome linked disorder is transferred from carrier mothers to their sons.
Hemophilia A (clotting factor VIII deficiency) is the most common form of the disorder, present in about 1 in 5,000–10,000 male births. Unfortunately, 14 years old Ali Raza from village mohalla Jattal Guliyana, Gujar Khan , Rawalpindi, was one of them.
Triumph on the birth of their third son, his parents took him for a circumcision ceremony. Upon noticing Raza’s profuse bleeding after circumcision, their worst nightmare turned into reality. Their third son, just like other two, was also a hemophiliac. Since then he has been under treatment from Pakistan Institute of Medical Sciences (PIMS), a public-sector tertiary care hospital in Islamabad. Ali who was sharing the three-room old ancestral home with his family of 11 members consists of two elder brother, two sisters, parents, grandmother, uncle, his wife and two cousins. Considering bearing the burden of medical expenses of three hemophiliac sons, their financial settings became more distressed when his father due to spinal injury lost his job five years ago. As the average cost of treatment is usually over PKR 150,000/- annually, the total household income of Rs. 14,000 coming from his mother and his migrant worker uncle is too less to bear medical expenses for 4 members with chronic illnesses: three hemophiliacs and one with spinal injury. Whenever Ali gets injured he had to admit for treatment and it increases the medical expenditure for the poor family. In one of the recurrent episodes of acute swelling around elbows, knees, and ankles due to internal bleeding, he was admitted to the PIMS children ward. As per standard treatment protocol he was prescribed factor VIII injections. Not being able to pay anymore for injections and diagnostics, the doctor in PIMS requested Heartfile health financing (HHF) on July 24th, 2014 to provide financial aid of Rs. 30,000 for the said patient. HHF quickly mobilized its assessment and verification team in Islamabad to conduct a socio-economic evaluation of the patient. Upon successful completion of the assessment, the patient was found eligible for full assistance to underwrite the cost of the treatment. Not only the first time, HHF managed to full fill the patient’s medical needs on other two occasions as well making an expense of total 66,900 on patient’s behalf. This is a story of one boy which we were very fortunate to share some of the financial burden of his parents but in Pakistan, there are 18,000 patients with hemophilia and a massive program is needed to help all.
The reality is that 90 per cent of people with bleeding disorders in Pakistan have not yet diagnosed or still receive no treatment at all. Registration of patients to various treatment facilities of hemophilia care is less than 10%.
The effectiveness and efficacy of Heartfile Health Financing program to target the poverty feature in un-accessibility of hemophilia treatment is only tip of the iceberg. There is so much needs to be done to address lack of awareness, illiteracy, poor acceptability of disability and social taboos which creates this "Gap" of access to diagnosis and treatment of Hemophilia in the country.