Volume 2 Issue 11 - June 01, 2004

"Awareness is crucial for accurate and timely diagnosis"

Dr Sita Ratna Devi has the unenviable task of taking over from the founder of Hemophilia Federation India (HFI) Ashok Verma, who died last month. She has been with the organisation since February last year when she joined as a project manager. On May 16 she formally took over as executive director.

Dr Devi began her working life as a doctor in Gujarat and her 10 years of experience; working in the field with disadvantaged rural communities has stood her in good stead for the work at HFI. She is only too aware of the importance of awareness in helping people deal with their medical problems.

Picture of Model Rahul Dev and Preeti Monga at the Fashion Freedom show

When was HFI set up? Who was the driving force behind it?

The organisation was registered on November 25, 1983, but it existed for some time before that. It was started by a handful of people with hemophilia (PWH) along with some family or friends of PWHs. The driving force from the beginning was Ashok Verma, also a PWH.

Initially three chapters were registered: in Trivandrum, Delhi and Calcutta, involving a close-knit group of treating doctors and PWHs. They were concerned about the shortage of the anti-hemophilic factor needed to stop bleeds in PWH and the original intention was to lobby the government to act in providing appropriate treatment.

However, at the time there were very few identified PWH and the government was more concerned about malaria and other more visible health problems. Members therefore started travelling to remote areas to trace families of PWH and attempt to show that hemophilia was also having an effect on vast numbers of the population.

How did this group develop into a more structured organisation?

During this time Ashok fractured his leg and it refused to heal. Eventually he had to undergo amputation. During the course of his treatment Ashok was introduced to Professor Mannuchi, who encouraged him and his friends to form self-help groups.
Mannuchi introduced him to the World Federation of Hemophilia (WFH).

In WFH, developing countries are mentored by a technically stronger country, which runs a comprehensive programme. The subsequent relationship with Denmark was instrumental in HFI's development.

What was the main effect of the contact with WFH?

Through WFH, HFI got funding for a project in 1996-97. The primary objectives were to double HFI's membership and to provide treatment for all members and support for PWH and their families. At the end of this period there were 3,500 PWH registered.

We received funding for a larger project in 1998-2001, enabling us to provide active support for many activities. That's when HFI actually started taking shape.

One of the major tasks was to strengthen the head office and formulate a vision/mission statement. Central to this was the strengthening of administration skills, which would help HFI to become more sustainable.

Four regional offices were set up in Calcutta, Delhi, Pune and Chennai. They were asked to co-ordinate activities among themselves and the regional directors provided training to enable them to be self-sustaining.

Training is a large part of HFI's work. What form does this take and who benefits?

HFI began offering clinical and awareness training for doctors and lab technicians in 1998. Such awareness is crucial to the accurate and timely diagnosis of the disease.

Courses were also set up to teach parents how to deal with the fact that their child was a PWH. Parents who are not aware of the disease will not recognise its first stages, which show as bluish bruise marks on babies from about one year old. It is only later, when a child falls and a wound refuses to stop bleeding, that they will approach a doctor.

Some parents were found to be over-protective with their children. In a bid to protect them from injury, children were being prevented from leading normal lives: not allowed to play outside or go to school, and in extreme cases not even allowed out of bed.

Counselling teaches parents to allow the children to live normal lives. It also explains about associated problems such as swollen joints, and teaches them how to alleviate such problems, thus helping to avoid deformity in later life.
We also focus on HIV /Aids awareness and teach young PWH to lead independent, active lives.

How important is it to reach the families of people with hemophilia?

Hemophilia is a genetic disorder. A father may pass it on to a daughter -- who will be a carrier -- and a carrier mother may have a son who has hemophilia.

We provide counselling for families of PWH, particularly the children. They need to understand the effects of the disease so they can cope with it later in life when their own children may be affected.

Young couples also need to be made aware of the disease before they get married, and need to tell prospective in-laws about it. Many young couples are now approaching us for testing and counselling before they take the decision to get married and start a family.

In India there are around 60,000 PWH. But we have been able to identify only 8,500 so far, though we hope to keep on increasing this figure.

Do you come across resistance when trying to educate people about the disease? How do you deal with this?

Hemophilia is often viewed as a stigma, something shameful to be hidden. Families are afraid that if their community gets to know about the disease, they will be shunned and will be unable to find spouses for their children.

In the case of daughters who are carriers, the problem is often not revealed to the family she is getting married into. In later life, therefore, she will go through the entire trauma of watching and taking care of a child with hemophilia. If her condition is revealed then she is stigmatised.

We work with families of PWH to explain that there are ways to prevent birth of children with hemophilia, and also that there are ways of controlling or preventing bleeds.

Does HFI help PWH in other ways apart from providing medical support and counselling services?

We have recently set up an economic rehabilitation programme. Physical or manual labour is impossible for people who have to avoid any form of injury, even minor cuts and scrapes so the most suitable work for PWH is in offices. But as many have missed out on even basic schooling they are not able to get office jobs.

When we asked our members what they felt would improve their lives most, the resounding answer was that they wanted support to find jobs and gain a level of economic independence. Therefore we began to provide financial support for enterprises such as STD booths and grocery shops. We had no experience in running an aid assistance programme but it has been hugely successful.

Alongside that, we are increasingly involved in lobbying the Government and have formed a group to lobby with bodies such as the Ministry of Social Justice, National Aids Control Organisation and Health Ministry.
As a consequence of this, we realised that an isolated voice is never heard, so have started networking with other disability organisations.

You have recently received a three-year extension for the "Living with Hemophilia in India," project, funded by Danish International Development Agency (Danida). What issues will HFI deal with during this project?

In 2001 we approached Danida and got an extension of the current project till 2002, when an impact survey was completed. This highlighted the need to continue to the end of 2003 in order to strengthen the organisation's documentation practices.

The results were presented to Danida and a consolidation phase was asked for. By the end of this period HFI should be a self-sustaining organisation, capable of gaining funding from donors within India rather than relying on foreign aid. Currently there is an over-reliance on the funding from Danida. We have some small donors but need a sustained programme to strengthen this part of our organisation.

What do you hope to have achieved by the end of this project?

We intend to be fully able to sustain ourselves. And to have registered a total of 15,000 PWH: that is a quarter of the total number of people with hemophilia in the country. It will be a significant milestone and is a big challenge for an organisation that has just lost its biggest missionary.

What do you consider has been HFI's main achievement since the organisation was founded 21 years ago?

Our major achievement has to be that treatment is given to every person with hemophilia who approaches us, irrespective of whether or not they are able to pay for it. We ask for a contribution but no one is ever turned away. Any PWH can approach their nearest chapter.

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