THIRUVANANTHAPURAM: Patients suffering from haemophilia, a mostly genetic disorder in which blood does not clot normally, will no longer have to worry about travelling to the hospital while enduring pain and discomfort. For, the health department is planning to reach out to haemophilia patients who face difficulty in moving, to provide them treatment at home. The decision will be a boon for patients as they would not have to travel all the way to the hospital and also ensure much-needed continuity in their treatment.
The home care programme will be implemented using the palliative care facility in panchayats, said an officer with the health department. “Besides providing medicines to prevent bleeding, the outreach programme will also provide physiotherapy,” he said.
The health department is launching the comprehensive treatment programme offering individualised care after it was found that lack of proper follow-up worsened the treatment outcome of haemophilia patients. The department has started maintaining a registry having the details of patients, including their medical history.
The state has over 1,600 haemophilia patients and the government provides free medicines and treatment to them. Each vial of a popular blood clotting factor costs above `2,000 and a patient may require upto 20 vials during an emergency.
The government also provides prophylaxis (treatment to prevent diseases) to children to prevent bleeding. During the World Haemophilia Day observation at Thiruvananthapuram Medical College on Monday, Health Minister Veena George said prophylaxis treatment given to children – currently available only in daycare centres – will be expanded to taluk hospitals. She said providing prophylaxis treatment to adults is also under consideration.
Meanwhile, limited treatment options have led to complaints from parents of children suffering from haemophilia. “Children have to be taken to the hospital for prophylaxis at least twice a week, which affects their studies and the parents’ work,” said Jimmy Manuel, regional council chairman (south), Haemophilia Federation (India). The parents demand that the government allow them to keep medicines at home so that the caregivers can administer it at their convenience. Adult patients have also demanded that they be permitted to maintain a stock of blood clotting factors for self-infusion.
Veena has said the demand for keeping one or two doses shall be considered. The health department is also planning to provide the stock of medicine on a selective basis. “We have faced issues with people hoarding the stock of costly medicines in the past. The administration of haemophilia medicine should not be equated to an insulin injection. If injected in an artery, it can cause death,” said the officer.