I'm in a very hot internet cafe in Agra - of Taj Mahal and mosquito fame. But I'm not going to write about that because all we've done today is travel to Agra, along the usual crazy Indian highways - shared between people, bicycles, cars, massive lorries, auto-rickshaws, regular rickshaws, motorbikes (lots), fruit seller, dogs, and various beasts of burden - mostly cows today and the odd camel.
Instead I'm going to write a bit about our hosts, and the people who run the sponsor a child scheme this end - the Haemophilia Federation India (HFI). They've been around since 1983.Alan Tanner - of Haemophilia Society UK fame - was around at and supported the foundation. In the last ten years they've expanded from 30 local groups to 65 across India. Their task is absolutely massive. There are currently 13000 diagnosed Haemophiliacs in India. No-one knows the actual number, but the estimate for those with Haemophilia A or B is 148,000 (compare with 6000 in the UK). Both those who are diagnosed and those who aren't suffer from the symptoms of haemophilia. In addition, many of them are stigmatized by their communities - the same stigma that attaches to any disease about which little is known. It also destroys families. We've met two women since we've been here whose husbands have left rather than support their haemophiliac sons. HFI faces the task of not just providing factor and other medical care such as physiotherapy, but of reaching out across this enormous country, educating people about haemophilia and attempting to de-stigmatize the condition. This is the size of the challenge.
Here is the good news. HFI already provides subsized treatment to around 6000 haemophilia patients, bringing factor therapy within reach of families who otherwise couldn't afford it. That's 6000 people who no longer have to run the risk of blood or plasma transfusions, and 6000 people who have the potential to reach adulthood without a major disability.
More good news - HFI's goal is to reach a situation where all 148000 Indian haemophiliacs free access to treatment. And the plans are in being put in place. Yesterday, Oliver (head of fundraising at the UK society) and I were in the HFI office to talk strategy (well Oliver was there to talk strategy, I was there to play cricket with the kids on the square of dust outside, and to suggest tea breaks). Oliver's message was that we did it in the UK, and that though it will take time, it is possible in India too. He knows a hell of a lot more about it than I do - so I'm just going to say that I believe him.

What's possible and what's not possible

Yesterday we visited a Haemophilia treatment centre in one of Delhi’s hospitals. There we met Dr Garg, a senior orthapaedic surgeon who’s been involved in the treatment of haemophiliacs for many years. He told us three stories.

A patient arrived at the hospital with a broken femur and a huge pseudo tumour on his leg. For five years this twenty five year old man had been lying at home, in acute pain and unable to move. No-one was prepared to treat him. It was 1995 and the small centre had never operated on a haemophiliac. They put out an appeal for donations to fund the Factor necessary for the surgery, and Dr Garg succeeded in amputating the damaged leg. Within months, the young man, complete with a prosthetic leg, had opened a shop. When they last met, he told Dr Garg he was planning to get married. It is wonderful to see, the doctor said, this man is now so happy.

Some years later, a twenty year old patient crawled on all fours into Dr Garg’s office. His limbs had been so badly deformed by untreated bleeds he had no other way of moving around. It was, said Dr Garg, a pathetic sight to see. The man was admitted to the hospital. Their supplies of factor, again acquired through donations, were highly limited (they call it “treating conservatively” over here – which basically means they use absolutely minute quantities of factor incredibly sparingly). Injections were combined with a programme of traction and physiotherapy. After three months, the man walked out of the hospital on his own straightened legs.

The final story Dr Garg told is a contemporary one. They have a twenty-eight year old patient who needs a full hip replacement operation. But he has an inhibitor. He completed his education and wants to be a teacher. Instead he is lying at home unable to move and he has been there for the last year. The doctor told me that they have been trying to find donors – but the cost of inhibitor drugs is massive and they have been unsuccessful. Worse, he says, there is no prospect of the centre being able to fund surgery for him in the near future. I asked Dr Garg what will happen to the man without the surgery. “God knows,” he said.

What do we have in common?

One of the reasons why I’m here is an assumption that because I have severe haemophilia and the people we are meeting have severe haemophilia we ought to have some experience in common. After the first couple of days of meeting Indian haemophiliacs I was beginning to think that the assumption of any kind of common ground was hopelessly naïve. I’m twenty-eight and I can walk unaided and without limping (rare in India), unlike many Indian (and UK) haemophiliacs I don’t live with chronic pain, I have a career that is not limited by my condition and I am not in poverty.
Yesterday on our final visit to a family, I found something. Sanjeev (not his real name) lives in a small apartment in East Delhi with his mother and father. He is fifteen years old, and from the moment we arrived he didn’t stop grinning. Eager to try out his English, he introduced himself and started to chat away – smiling ear to ear the whole time. After lots of chair arranging, and shepherding of non-essential personnel into the second little room in the apartment, I asked him how haemophilia effects his life. He looked at me, looked round, looked down at the floor. Then he looked at the camera and said “haemophilia is a severe danger problem.” As he said the word “danger” the grin fell off the bottom of his face, he stopped, swallowed looked hard at the floor for a long time, then looked up and said “this problem that has come into my life is very dangerous.”
I recognized exactly what was going through his mind – it was fear. I knew because I recognize it in my own relationship to haemophilia. That sense you carry around that you are never very far from harm, that if you make a bad choice, or are just unlucky, something can happen to you which is irrecoverably crippling. The difference between Sanjeev and me is that I worry backed up by 12000 units a week of prophylactic factor. Sanjeev’s family can rarely afford Factor VIII, and to buy it, even in tiny quantities, is a major financial outlay. If I fall down in the street, it’s a painful inconvenience, if he falls down in the street, his future may be forfeit. Sanjeev’s fear is justifiably far more acute than mine, but it is the same fear – and that’s one thing that I have in common with Indian haemophiliacs.

Visit to a sponsored child

We visited a slum today. You get to it by stopping under a flyover on the hard shoulder of a major road, jumping over the crash barriers and following a path between piles of waste on the banks above a narrow green river. Looming over us on the far bank, behind a large perimeter fence topped off with barbed wire, stood the World Health Organization. The river below it is largely composed of sewerage and junk, and it stinks. As Oliver said, not healthy.
By comparison to the path into it, the slum itself was clean and tidy – wastewater flowed out through open channels built into the stone paths. We were swarmed by flies, and children grinning and waving as we entered the narrow streets. Here we met two brothers, Suhinda and Segunda, one about eight, the other six, both with haemophilia, and both sponsored through the UK Haemophilia society scheme. Suhinda, the eldest boy, already has a knee massively swollen out of all proportions to his slender legs. His elbow too is red and inflamed. We ask him whether the knee still hurts, and he tells that it hurts him all the time.
His mother tells us that her husband has left, unable to deal with having two haemophiliac sons. Without his support, she, her daughter and the boys have to live in a single room, about 10 foot square, with no windows, and no space to move. She doesn’t yet know if her daughter is a carrier of haemophilia – she doesn’t want to think about it. If the daughter does carry the gene, then the chances of her getting married are drastically reduced. There are few people here who would knowingly risk having haemophiliac children.
Suhinda and Segunda are both sponsored children, and despite the horrible conditions in which they live, they are much better off for it. They were added to the scheme in 2006, not in time to save Suhinda’s knee, but in time to prevent his brother developing any similarly debilitating joint problems. Suhinda meanwhile, though he lives in pain, is able to attend school because of the Factor VIII he gets for free thanks to UK donors. Without this support, neither boy would have received any treatment; this family could never have afforded to pay for it. The fact is that before someone in the UK forked out to sponsor these two statistically neither were likely to live beyond the age of 17. Neither of them had any future to look forward to. Now, though their lives are never likely to be easy, they will both have lives. Both will be able to work, and they can expect to live to 60 years old. That is the scale of difference fifteen quid a month makes in India.
More tomorrow. If you have comments or question, please leave a message. Our internet access is a bit patchy, but we’ll do our best to reply.