A new health act this winter?

On November 24, the Hemophilia Federation India (HFI) Saturday submitted a memorandum to President Pranab Mukherjee to include hemophilia and thalassemia in the category of benchmark disabilities in the Rights of Persons with Disabilities Bill, 2012.

A patient being treated at a hemophilia camp conducted by Hemophelia Federation of India

"A hemophilia patient can bleed up to 30 times a year, causing blood loss, joint injuries and severe pain. At this time, an orthopaedic surgeon will declare the patient 60 or 70 per cent disabled. Once recovered, he/ she can move and walk around normally, and thus the disability becomes dormant. This is why it should be listed as a benchmark disability, which promises the security of a government job," says Dr K Ghosh, president, HFI.

A patient is graded for the severity of the disability, and accordingly falls under a particular reservation category. "A person who doesn't have a finger is also disabled but he is not entitled to a job reservation. Thus, up to 30 per cent disabled persons, and completely bed-bound patients, do not get any job reservation. A 40 per cent disabled person deserves a job reservation and that is what we are fighting for," says Dr Ghosh.

Excerpts from an interview with SS Roychoudhury, chief executive officer, HFI:

What is the memorandum that has been submitted?
We want the government to include hemophilia and thalassemia - an excessive destruction of red blood cells, which leads to anemia - in the list of benchmark disabilities section, which promises the security of a government job. The two disabilities are not physical. Hemophilia is an uncontrolled bleeding disorder, due to the absence of clotting protein in the blood. Hemophilia attacks have no specific trigger - it can start if a patient stands for too long, is mentally abused or even worried. Its patients need job security.

What about thalassemia?
In thalassemia, the body creates an abnormal form of haemoglobin, which results in excessive destruction of red blood cells and leads to anemia.

What is the treatment?
Anti-hemophilia factor is a life saving drug. Unfortunately, it is not produced in India and has to be imported, making it very costly. After every bleeding episode, a patient needs to be injected with 500 units of the drug, which costs approximately Rs 10 to Rs 25 a unit. This means that each time, he/ she has to shell out Rs 5000. A patient suffers up to three bleeding episodes in a month. During a bleeding episode, the joints bleed, causing swelling and a patient cannot move or walk. In thalassemia, whole blood transfusion is part of the treatment, but in hemophilia, a transfusion can lead to HIV or Hepatitis C.

What are the challenges faced by hemophilia patients?
Hemophilia patients don't even have insurance coverage. Insurance companies don't give coverage to hemophilia patients as their illness is life-threatening and their life span is short.

What is the road ahead?
Awareness is crucial at this point. Hemophilia is passed on from mother to foetus. If a woman has hemophilia, she can get it tested before she decides to conceive a baby, but not many Indian families believe in getting genetic tests done before marriage. There is a social stigma attached. If a woman is a carrier, it can be detected by a genetic test, and once she conceives, there are tests which can determine whether the foetus has hemophilia. And even if it is detected after conceiving, the law allows the foetus to be aborted.

Disclaimer: The HFI spells haemophilia as hemophilia and that has been maintained in the story