Published On: Mon, Apr 18th, 2016

The Prey of ‘Royal Disease’ 

 

 

Inadequate funds for healthcare has resulted in death of many haemophilic patients whose numbers are swelling in J&K. The disease has also forced many patients to put up in rented accommodations close to Srinagar in the hope of saving their lives. Will the policymakers open their eyes to the problem?      

By S Muzamil

On February 1, Ghulam Nabi Bhat arrived at Srinagar’s SHMS hospital with his 12-year old son, Inam Ahmad, in a critical condition, pleading doctors to save his life. Inam, a haemophilic patient, had lost “almost all blood” in his body due to an internal injury and the only way to save him was immediate blood transfusion.

F1.large

Bhat, a resident of Chursoo, Tral in Pulwama, however met the first disappointment when the doctors advised him to rush Inam, who was on the verge of dying, to Children Hospital for treatment. “He is very sick….Don’t waste time,” Bhat recalled doctors telling him, refusing to entertain the case.

A worried father, Bhat silently followed the diktat without wasting time. But no sooner had he reached the Children Hospital that he was told by the authorities there that the Valley’s only Paediatric healthcare facility, supposed to cater to around 25 lakh children, had no blood bank.

“Go back to SHMS hospital for arranging blood,” Bhat was told at the GB Panth hospital.

Helpless Bhat left his son in the critical condition at the hospital and returned to SHMS for arranging the blood. He succeeded and went back to the hospital. But as he stepped into the emergency, looking for the doctors, he was received with eerie silence. Moments later, a man walked up to him and hesitantly broke the news about the tragedy that had befallen.

Inam was dead.

“Had he (Inam) received timely blood infusion, he would have survived,” a doctor told Kashmir Scan.

This isn’t for the first time that Bhat had to ran from one tertiary care hospital to another, which are supposed to be equipped with all life saving medicines, in the capital city of J&K, to arrange blood or other life saving medicines for his son.

Three days before Inam died, he was taken to SHMS hospital in a critical condition after he had suffered internal bleeding. But owing to non-availability of factor-VIII – a medicine that helps stop bleeding in haemophiliacs, Inam had to be shifted to Sher-e-Kashmir Institute of Medical Science.

“At SKIMS, the authorities told us that they were running short of factor-VIII. It was only after I pleaded them that they agreed to give Inam fresh frozen plasma (FFP),” Bhat said. The FFP is a substitute for factor-VIII.

Unmoved Government

A haemophilic by birth, Inam had turned paraplegic – a condition wherein a patient suffers from paralysis in all the limbs.

Haemophilia is a lifelong genetic bleeding disorder that prevents blood from clotting. People with haemophilia do not have enough clotting factor – a vital protein in blood that controls bleeding.

Inam’s death, the latest of any haemophilia patient in the Valley, exposes the neglect towards treatment of these patients when the state government is supposed to ensure availability of medicine round the clock for the ill-fated patients.

As per official data, in the past three years at least six haemophilia patients have lost their life and in all such cases, non-availability of the medicine has been the common reason for death. Frequent and long delays by the government to allocate funds for procurement of medicines at Day Care Haemophilia Centre at SHMS have only added to the problem.

Last time, the Government Medical College (GMC) Srinagar was given Rs 1.10 crores for procurement of medicine in August of 2014. “That time we procured 460 vials of Factor VIII and 120 vials of Factor IX for 240 registered patients. But the supply lasted for only few days,” said an official at the centre.

Of the Rs 1.10 crore, the authorities first cleared the previous debt of Rs 78 lakh against medicines. “How can you expect better treatment and care for these patients when the government hardly provides budgetary support for procurement of medicines,” said the official.

He said the government has already been conveyed that ensuring round the year supply of medicines for haemophilia patients would require budgetary support of Rs five crores annually. “But who cares in the government,” the official said, adding around 240 haemophiliacs were at the present registered with the GMC.

Most of these patients are, however, poor and hence can’t afford the costly treatment on their own. One Factor VIII injection costs Rs. 4000 in market.

In 2012, when haemophilia patients came out on roads asking government to ensure supply of medicine, the High Court took the notice of the issues and cautioned health authorities against any laxity.

“Failure to ensure appropriate treatment to haemophilia patients is injustice and any such lapse would result in fixing the responsibility of an officer who has committed lapse. If the respondents-State fails to discharge its duties then the petitioner would be at liberty to file appropriate application which shall be taken up for passing appropriate orders,” the court had observed in its order.

However, nothing has changed on the ground. Last year, the non-availability of the clotting factor at the SMHS hospital saw another haemophilic patient, 15-year old Muhammad Arif, losing battle for life. Arif had suffered a head trauma, resulting in profuse bleeding which could have been stopped had he been administered the clotting factor.

A senior doctor said the death of the haemophilia patients was not the only concern. He said the shortage of medicines at the SMHS Daycare Centre for Haemophiliacs has resulted in permanent disabilities in the limbs of many patients, owing to chronic bleeding into their joints.

“These disabilities usually get unnoticed as there is nobody to listen to these patients whose purpose of life, in absence of quality treatment, has got reduced to only to race for survival, owing to the state government’s negligence,” said the doctor.

Growing Numbers

The Society for Haemophilia Care (SHC) – a New Delhi based non-profit organization working for haemophiliacs, claims that there are more than 2000 haemophilia patients in the Valley. The SHC, which has been working in the Valley, was the first organization that had filed the PIL in the High Court in 2011, urging that the government should provide quality and uninterrupted treatment to the haemophilic patients.

“Owing to lack of diagnostic facilities in the Valley, lesser number of patients have registered themselves with the government,” said an official of the health department.

Raising question mark over the government’s commitment to provide quality medical care to haemophiliacs, young men from different districts of Kashmir, who suffer from the life threatening disease, have been putting up in rented accommodation in Srinagar for years as the treatment is still absent in hospitals outside Srinagar.

In one such case, three youth have rented a single room in the vicinity of Sher-e-Kashmir Institute of Medical Sciences in Srinagar, fearing non-availability of the medicine in time of need back home might prove costly for them.

One of the youth, Mehraj-ud-Din Pir of Kupwara, was diagnosed with Haemophilia-A at the age of six. “The moment I understood the disease, I was shattered…the idea of a normal life is a dream for us,” said Pir, 25, who completed his B. Tech last year. His right foot and knee have got deformed because of the disease.

For the trio, the idea of living a normal life with their families is inconceivable as the fear of death weighs heavily on their minds due to the government’s negligence towards the haemophiliacs.

 “We are like a family here and in times of need we share drugs to save our lives,” said Ashfaq Mir, Pir’s roommate mate, who is also suffering from the life threatening disease.

Mir’s family had to sell off their land to buy anti-haemophilia factors for their son to see him alive. In many cases, entire families have shifted to Srinagar to stay put close to healthcare facilities with a hope to get easy access to drugs when needed most.

A government teacher, Manzoor Ahmad Mir from border town of Uri in north Kashmir, shifted to Srinagar in 2011 along with his family for his two haemophilic sons – Danish and Ikhlaq. While Ikhlaq passed 12th standard examination recently, Danish has completed three-year diploma in civil engineering and is planning to pursue B. Tech.

The weak financial condition of the family and the expensive treatment has cost the brothers many of their dreams in the past, especially during the festive occasions. “On Eid, children of other families enjoy variety of dishes and sweets while I bring drugs for my haemophilic children,” Manzoor said.

Another patient, Shakeel Ahmad, who hails from Bandipora, has shifted to Tengpora in Srinagar. He missed his post graduation examination last year because he could not get anti-haemophilia factors at SMHS hospital.

Haemophilia & Much More

Due to the non-availability of Factor-VIII in the hospitals, the haemophiliacs are often administered Fresh Frozen Plasma (FFP), the liquid portion of human blood that contains components of coagulation. But at times, the FFP transfusion proves dangerous.

“It (FFP) is dangerous as well as ineffective. Due to faulty screening of blood stored in our hospitals, many haemophilia patients have got infected with life threatening Hepatitis viruses and one among them with the HIV,” said Adil Fayaz, who is himself a haemophiliac and has been working for the patients.

The Doctors Association Kashmir (DAK) presented grimmer picture. According to the association, at least 49 haemophilia patients have contracted hepatitis. “Out of 90 screened haemophiliac patients, 45 have contracted hepatitis C, hepatitis B and one was tested HIV positive due to contaminated blood product which they receive on-demand during bleeding,” said DAK President Dr Nissar-ul-Hassan.

He said the haemophiliacs had no other place to go for treatment as the only designated haemophilia centre at SMHS hospitals lacks both infrastructure and expertise. He then drew the attention towards the death of Inam.  “He (Inam) died in cold blood due to non-availability of clotting factor V111 (anti-hemophilia factor),” Dr Hassan said.

Inam’s father Bhat now fears for the life of his 2nd son. “I have a four year old son, my only hope, but he too is haemophilic. There is nothing that can reassure me that my son will not lose his life in a similar way as Inam did,” a worried father said.

Little Hope

In absence of adequate funding from the government for procurement of Factor-VIII, the patients are often forced to opt for the FFP in times of crisis. Following Inam’s death, a high-level meeting was conducted at SMHS Hospital to discuss “up gradation” of Haemophilia Day Care Centre and better facilities for the patients.

The meeting which was attended by HoDs of various departments in addition to representatives from government’s planning department and GMC administration, deliberated on formulating a policy for treatment of the patients. A senior GMC official said “comprehensive and multi-sector intervention” was needed to help patients live a “better life”. Principal GMC, Dr Kaiser Ahmed however stressed on the need to have an effective system in place to minimise risk to life of haemophilia patients.

When will that system be put in place and how many more lives will be lost before it comes into existence is anyone’s guess!

About the Author

Kashmir Scan

Leave a comment

XHTML: You can use these html tags: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>

Show Buttons
Hide Buttons
Close