Interview

Volume 4 Issue 9 - May 01, 2006

Hemophilia is a human rights issue: Ranjit Mookerji

“There is no mention of Hemophilia in the government health schemes. We feel that hemophilia is a human rights issue because every human being has a right to proper health care,” says Ranjit Mookerji, Executive Director, Hemophilia Federation, India, in an interview to Nivedita Datta.

1) What is Hemophilia?

Hemophilia is a life-long genetic bleeding disorder in which the sufferers bleed longer than non-disabled people. Not only is the bleeding external when a wound/cut/injury takes place, but People with Hemophilia (P.W.H.) have to struggle with internal bleeding as well, which is much more painful.

2) What are its causative factors? How can they be treated?

Hemophilia is caused by absence or deficiency of blood clotting factors. In P.W.H., blood does not clot and the sufferers bleed longer than non-disabled people.

This cannot be completely cured but it is absolutely manageable with infusion of A.H.F. (anti hemophilic factor), which is a life saving drug for P.W.H. In the absence of timely availability of A.H.F., the sufferer can bleed to death. A P.W.H. can lead a normal life if A.H.F. is available.

Hemophilia can also be managed with the aid of physiotherapy, which can help in relieving pain and restoring muscle power but not without factor VIII & IX.

3) We all know that hemophilia is a non-curable disorder. How can its effect be minimised?

In my view, to minimise the effect of Hemophilia, our key concern should be to raise the awareness about this bleeding disorder. The only way to prevent hemophilia is carrier detection (C.D.) and pre natal detection (P.N.D.) test. The pain and suffering associated with hemophilia can be lessened by practicing physiotherapy and providing emotional/psycho-social support to P.W.H.

Moreover, its effect can also be minimised by making A.H.F. readily available, which is unfortunately not manufactured in India presently.

4) What are the cost implications in terms of medical expenditure for hemophilic persons or his/her family?

The main hindrance in providing relief to P.W.H. is the cost implication of A.H.F. This life saving drug is extremely expensive, so much so, that it is difficult for even the well-to-do families to afford A.H.F. in case of severe injuries.

The cost of A.H.F. is around seven rupees per unit and it requires several thousands of units to manage a sizeable injury/bleeding. Actually, the cost varies from the type of injury and episode to episode. For instance, knee joints may be treated by 2,300 units of A.H.F. for a 50 kg body weight, but intracranial injury can call for 30,000 units of A.H.F. which will cost around two lakh rupees. This is the cost of only one bleeding episode. The average monthly treatment cost on an average is Rs.12, 000.

The treatment cost makes the family financially crippled if a child is born with hemophilia. Since a P.W.H. cannot be as physically active as non-disabled people are, he/she has to loose out high salaried jobs to his/her counterparts who are non-disabled and equally qualified. So, a kind of vicious circle sets in the family of P.W.H.

5) How many people are affected with hemophilia in India and worldwide?

As per W.H.O. data, the prevalence of hemophilia is one among 10,000 people. Therefore, it is estimated that about one lakh people in India are affected with hemophilia, out of which only 12, 094 have been identified so far by H.F.I. Worldwide, 4, 20, 000 (Ref. Park’s Preventive & Social Medicines; edition 18) people are identified with hemophilia.

6) What is the level of awareness about Hemophilia in India?

Hemophilia is as lethal as H.I.V./A.I.D.S. but the awareness part has not gained much momentum in India. This is mainly because of the lack of Government support to hemophilia. You will hardly come across a person who is familiar with this term; those who are familiar do not know much about its inheritance and treatment.

But, since the inception of H.F.I. in 1983 and with the help of Danida supported project, we are trying to raise the awareness level among masses through various activities like local/regional camps, physiotherapy camps, etc.

7) Hemophilia is still not considered a disability. What according to you are the reasons for the same? What kind of support is needed from the Government?

Hemophilia, if not managed well, can lead to permanent disability, but still is not considered a disability. Visibly, a P.W.H. does not look like a disabled person but continuous suffering leads to joint deformation because of recurrent bleeding from joints. A P.W.H. is very vulnerable to disability, there is a risk of bleeding (internal) anywhere, anytime, but this is not apparent. Joint destruction causes physical handicap.

Government support is imperative in the welfare of P.W.H. The Government should cater to this bleeding disorder in its health budget and therefore should introduce schemes for the interests of P.W.H. and their families. Government should also look into providing psychosocial support (reservations in schools, etc), physical and financial rehabilitation of P.W.H. and their families.

8) What is the role of H.F.I. in advocating for rights of hemophilic persons? What according to you are the challenges and how can H.F.I. address these issues?

H.F.I. is the only autonomous organisation in India dedicated to the cause of hemophilia through the network of various chapters distributed all over India.

The main challenge ahead for H.F.I. is to gain the support of the Government, be it financial or psychosocial. H.F.I. is also confronting lack of public awareness, which is a hurdle in hemophilia prevention. It becomes difficult to tackle these issues because of financial constraints/lack of funds. Also, there is no mention of hemophilia in the Government health schemes. We feel that hemophilia is a human rights issue because every human has a right to proper health care. Presently, H.F.I. is trying to combat many such issues to prevent hemophilia and improve the conditions of P.W.H., so as to realise our mission.

9) Recently, you celebrated World Hemophilia Day. What is the significance of the day?

World Hemophilia Day (W.H.D.) is celebrated to commemorate the birthday of Frank Schneble, founder of World Federation of Hemophilia, who was a P.W.H. himself. The day paves the way for creating awareness about hemophilia among the masses. This year, on 17 April, we organised a walk from Janpath to Boat Club and distributed awareness material.