Kerala: patients with hemophilia at the receiving end of government apathy

KOCHI: With the state government ready to liquidate the scheme of the Benevolent Fund of Karunya (KBF), hundreds of patients face difficulties. The supply of clotting factor concentrates (CFC) or factor VIII and IX, the agents in the blood that help with clotting, has been carried out through the financial support of KBF.

Although patients who have already registered with KBF will receive factor VIII and IX until March 31, 2020, new patients who have not yet registered with KBF face problems. New patients, mostly children under five, are at the receiving end. Those who have already signed up for the plan also don't know what to do after March 31, when the government will finish the plan.

“After the Union government announced the Ayushman Bharat scheme, the state government had to contribute to the scheme. Then, the state government decided to liquidate KBF and divert the funds to the new scheme. But hemophilia has not been included in the list of diseases and patients who are eligible for financial support under the new scheme, health department sources said.

Later, the health department instructed the concerned authorities to continue the free supply of factor VIII and IX to patients already registered with KBF until March 31, 2020. “At least 20 children under the age of five have come looking for of treatment. They are new patients and have not registered with the Karunya plan since the government has stopped accepting applications for registration. Now, those children and their parents are having a hard time, said Dr. N Vijayakumar, a medical officer in charge of the Hemophilia Treatment Center attached to the District Hospital. If the factor is not immediately available, many cases of bleeding such as cerebral hemorrhage can cause victims, he said.

According to the health department authorities, the government will introduce a new scheme for patients with hemophilia next financial year. “The government is exploring the possibilities of introducing a new scheme for patients with hemophilia starting next fiscal year. So far, we have not prepared one, said Rajan Khobragade, secretary of health. But the authorities have no answer about what patients will do until then.

Akhil, an Idukki driver, had come to HTC Aluva with his twins aged just six months. “It was a couple of months ago that my kids were diagnosed with haemophilia. I am finding it difficult to make both ends meet, ”Akhil said. “I am the only earning member in my family. After a brief treatment at HTC Aluva, we have returned home now. The doctors have advised us to ensure that kids don't fall or hit by any solid things. If it bleeds, there is no medicine available at the HTC. We are living under constant fear, ”Akhil said. Pratheesh P Soman and Sameer Roshan, fathers of children suffering from the disease also have the same story to tell.

At the HTC, Aluva where around 50 per cent of total haemophilia patients in the state are registered provides treatment more than 900 patients. On an average, it would require around Rs 30 crore for providing factor VIII or IX to these patients.