Seven-year-old Joyal Biju goes to school everyday like any other child his age. But unlike other students, he makes it a point not to fall down, get his skin cut, or even get pushed down too hard by someone, be it while playing or walking. Because, such a situation could turn life-threatening for him.
Joyal is one of over a thousand people in Kerala who live with haemophilia, a genetic disorder which prevents the body from being able to form clotting factors which help to stop bleeding during any injury. Of late, however, Joyal has been told by his parents to take extra care, to not even stumble over a stone while walking, for there is an unexpected shortage of his life-sustaining medicines essential if he begins to bleed or even gets a bruise.
With the supply of the life-saving medicines facing an acute shortage in the state, more than a thousand hemophilic patients in Kerala have been waiting anxiously for over two months.
When a person is injured, the body releases clotting factors to help form a clot to stop bleeding. There are a number of clotting factors, or coagulants, which are released to aid in this process. In an individual with hemophilia, clotting factors are not produced. As a result, even a small cut or injury could lead to severe blood loss and can potentially be life-threatening.
âThe medicines for this, known as anti-hemophilia factors, need to be injected into patients to make their body produce clots and prevent bleeding. And it is this, a life-sustaining medicine for hemophilia patients, that is now running out in the state. Failure to provide anti-hemophilia factors on time can result in the patientâs vital organs getting affected, causing disability or even turning fatal,â Jimmy Manuel, Regional Council Secretary of Hemophilia Federation of India tells TNM.
Government defaulting on dues?
According to officials of the Federation, which actively works with hemophilia patients in the state, the acute shortage began in November 2019 following the pharmaceutical company producing the medicine cutting down its supply. The Kerala state government had reportedly not paid the companyâs dues amounting to crores of rupees.
Even when there is no visible external injury or cut, hemophilia patients suffer internal bleeding for slight bruises. That part of the body swells and hemophilic persons say the experience involves âindescribable painâ.
âLast month, we ran out of medicines and it was not available in any of the (government-run) Karunya pharmacies where we usually buy it. You cannot imagine the agony we went through. Joyal is just a child and it is hard for small children to be carefull like adults. He can get a bruise or an injury at any time, even while playing. It is our sheer luck that we managed to get medicines from a relative of ours, who also suffers from hemophilia,â says Bindhu, Joyalâs mother.
Impact on daily life
The acute shortage of the medicine has adversely affected the daily lives of these people.
Until recently, 31-year-old Ratheesh Kumar, a native of Ettumanoor, was working as a driver in a textile shop. He lost his job since he couldnât be regular at work.
He says, âThere is a severe shortage of the medicine. I have saved two bottles in case if some emergency arises for me or anyone else. So when my legs were swollen, I had to rest and was unable to work for some days. If there was enough medicine, I could have taken a shot and been at work the next day.â
The Karunya scheme
The medicines for hemophilia patients cost between Rs 25,000 and Rs 50,000 a month, depending on the dosage. Earlier, when hemophilia patients in the state were in the hundreds, the medicines used to be supplied through organisations like the Hemophilia Federation of India.
Over the years, with hemophilia patients rising to over a thousand, the former Chief Minister Oommen Chandy-led UDF government stepped in, and launched a scheme to provide the medicines free of cost through the Karunya Benevolent Fund (KBF). Under this scheme, the government sold the âKarunyaâ lottery to the public and a part of the revenue from the sale was utilised to provide the hemophilia medicines free of cost. The Kerala Medical Services Corporation, a state government-owned company distributed the anti-hemophilia medicines (and other medicines) to patients at Karunya pharmacies across the state.
But now, in addition to the medicine supply being affected owing to non-repayment of government dues, the KBF scheme itself is facing a jolt as the state government announced its closure. The scheme, which earlier included medicines for other ailments, is now operating exclusively for hemophilia patientsâ but this too is going to be shut in March 2020.
The Union Government has launched another schemeâ the Karunya Arogya Suraksha Paddhathi (KASP), merging all other existing medical schemes.
No new patients can register
âBut this will be a disaster to hemophilia patients. It is said that KASP will be like an insurance cover. One has to get admitted in a hospital and procure necessary documents to get the required medical or financial assistance. But this will not work for hemophilia patients. Through the existing KBF scheme, patients can go to Karunya pharmacies and get medicines on-the-go while showing the Karunya card. During emergencies, this new scheme will not work as there is no time to spare for hemophilia patients to go around in a hospital. They need to take shots and they need it at once,â Jimmy Manuel says.
He also points out that since the KBF scheme has been stopped, only existing hemophilia patients will get medicines till this March; this means newly-diagnosed persons have not been able to register in the scheme to get free medicines. âThe newly diagnosed adults and even babies born in 2019 with the disorder have been left out,â he says.
According to patients and associations working closely with hemophilia patients, the Karunya Benevolent Fund scheme must be sustained for the smooth functioning of treatment procedures.
âComprehensive policy long overdueâ
It has been a long-standing demand of persons living with hemophilia that a comprehensive police be chalked out by the government for its treatment.
âStates like Tamil Nadu allocate special funds from their health budget for hemophilia patients. But in Kerala, such a procedure is not there and it all depends on the (sale of) Karunya Lottery. As per the sources, I heard even the present crisis arose since there is a dip in lottery revenue, leading to dues and the company stopping its supply. It is about time that the state government forms a proper policy,â explains Jimmy Manuel.
While Health Minister KK Shailaja announced in the Kerala Assembly in November 2019 that the state would be drafting a treatment protocol for hemophilia patients, no progress has been forthcoming since. And now with the medicines also in acute shortage, along with fears about the new Karunya Arogya Suraksha Paddhathi, hemophilia patients in the state have been left in the lurch.