Presentation at the Pakistan Society of Gastroenterology Conference at The Pearl Continental

So here I was, my first ever opportunity to speak at a National Conference and I turn up late! It took longer than expected to get ready, to cross town. and we were too late for our slot. I was reallly sad. I had decided that what I wanted to speak about was the patient experience of Hepatitis c. I had asked Shabana to speak, and althoughtshe was very nervous she agreed. I just think at these conferences its all too easy to forget who it is all about.

The wonderful kind Dr who gave us the opportunity managed to twist and squeeze the programme and got us on later that morning. Yippee! we were off!

I uploaded our slides of shabana's family, so many of whom have Hepatitis C, and we paced the hotel, waiting for our turn.

We stood on the stage, nervous as hell, in from tof Dr's, mainly surgeons as the talks before had been about Liver Transplant, so here we cam ewith something completely different. It went down like a lead ballon. As Shabana began to speak, people spoke to theri neighbours, got out hteir phones, left the room. it was awful. She spoke of how difficult it was to be told she had Hepatitis C, she spoke of her treatmetn in UK, she spoke of what we had learnt in paksitan. Of how so many of her family have Hepatitis C and can't afford the treatment, of how so many of her family have died of Hepatitis C. It was painful to talk about, especially when the audience was uninterested. Perhaps we were speaking to the wrong Dr's. Remeber we had missed our slot! And we were not mentioned in the the programme, so any Dr's who would have been interested could not come. In another conference room a very senior Dr from USA was speaking. So its perhaps understandable. And after wards a man with a son dying of liver disease, who was really distreseed and happy to speak to a nother real person came over, so maybe it was worth it. At the time it was demoralising. I strongly beleive that its the real true life stories from people with hepatitis C that will eventually transform this issue, in UK and Paksitna. There are no words that mean anything as strong as the patients words.

Visiting the slums

All round Islamabad, as in all the other cities in Pakistan, there are numerous areas with slums. The slums are mostly made of fabric, draped and shaped in to homes. ICAN workers kindly took us around one to meet some of their friends. In one way the slum village reminded me of glastonbury, or a peace camp. the main difference being that at Glastonbury or a peace camp people have other homes to go to.

Of course we have all watched tv shows with slums on them. But what the tv show can't tell us is the smell. In the street between the tents a stream of sewage ran, with shit floating or piling up.

the other thing you never see on tv is the pride that people take in their homes, however simple. Or the friendlines, or the endless cups of chai I was offered. One of the families we visited had lots of pets, including a rabbit and a green parrot!

In one of the homes there had just been a wedding. The lucky couple had the room decorated, it looked really beautiful. the young woman shyly showed us a few phots of her happy day. here is aphot of me and the lovely family with Carol from ICAN. The decorated bed is in the background.

Beautiful eh!

After spending time with the drug users and in the slums I was really knocked sideways. I think i've seen q bit of the world but I had never seen poverty like I saw today. Here we are in the 21st Century, I live in a land where each home has a couple of cars, where we rip out our kitchesns to fit the newest colours, where we all try to live like footballers wives, and here there are, lovely kind funny friendly people living in such poverty. It breaks my heart.

Visiting heroin users in Rawalapindhi

ICAN they took me and Shabana out to meet some of the local heroin users. We went to one of the spots where they use drugs, and visited one of the spots where they live.

In Rawalaphindhi the most common way of taking heroin is smoking not injecting. Apparently in Karachi and Lahore, much bigger cities that Rawalapindhi, there are more heroin injectors. But here the common method is much safer regards transmission of Hepatitis C. The heroin users live and take drugs in the most unimaginable filth. The smell was undescribable. The area they were living was under a stream of sewage and rubbish, living on layers and layers of rubbish. Here are some photos...you can't see much in the first one, then I zoomed in. If you look carefully in the dark you can see a blanket where somebody is sleeping.
Here's a photo of me and a few of the other workers standing on the tiny bridge over the open sewer/stream :

One of the lads we met was really upset. he had been beaten up by the police the night before:

They were a friendly bunch of young lads, and reminede me of lads from england. I think they quite enjoyed the attention!

Hepatitis C prevention with ICAN

ICAN are a small Chrisitan NGO that work with drug users and help them with rehabilitation. They have a residential communtiy where clietns can have a detox, and spend time learning hwo to live without drugs. When we visited them they were without premises, and were only able to do the minimum amount of work. they are hoping to move into a bigger building soon so that they can admit people and help them come off drugs.

Shaban and I spoke to them about Hepatitis C. they had not heard much about it, having concentrated all their efforts on HIV. They had never worked with a client with HIV. We gave the group of staff our Health Promotion Presentation, and found out that a few of the staff had Hep C or had family members with it. so much for all the work with HIV! As I discussed with them, by concentrating on Helatah Education about HIV they are missing an opportunity. The disease has different routes of transmission. Unlike HIV Hepatitis C is rearely spread by sex. Instead it is almost soley spread by blood. But unlike HIV it lives for along time outside the body, and terefore can be spread by every bit of kit that is used when people inject drugs. its not just needles, it can be spread by filters, spoons, water. Also as so few people in Pakistan have HIV the Hepath Promotion message means notheing. But Hepatitis C is rife. By concentrating on Hepatitis C prevention perhaps people will change their behaviour, because everybody knoows somebody with it.

Day 11 - Weekend in Islamabad and Rawalaphindhi

Today we travelled from Faislabad by motorway to the capital city Islmabad and its twin Pindhi. Islamabad is so strange. Its a new city, built on the edge of the himalayas. Its really beautiful, lots of green green parks, and wide boulevards. It looks like some European or American city. Even the traffic is less. But look again. Everywhere, tucked into every bit of green, is shanty towns. Strange mix again of a 21st city merged with a deeloping world city.

Its mostly the wealthier people who live in Islamabad, but all the workers and the usual chaotic, crowded, colourful Pakistan lives in Rawalapindhi.

My next stop, after we had got comfortable in our hotel, was off to a conference In the Pearl Continental to meet Professor Foster.

Professor Foster is a well known Hepatitis C researcher and consultant in London. After he moved from woking in the Royal Free in West London to working at the The Royal London, he noticed a change in his patients. No longer were they all from the drug using population. Suddenly he was confronted by many many ptients from Pakistan. Similiarly to me he wanted to find out more, and has done some imprtant research into the field (see D'Souza et al (2005) Prevalence of Hepatitis C–Related Cirrhosis in Elderly Asian Patients Infected in Childhood Clinical Gastoenterology and Hepatology Volume 3, Issue 9, Pages 910-917 ). So it was great to meet him. He's been at the conference for a few days, Honourable Guest, so he spoke with great enthusiasm about what her'd found out, and I spoke about the sad experiences I had meeting patients and clinicians on the front line.

Then one of orgainisers spoke to me about speaking at the conference on the sunday. Why not, I'd never get such an opportunity otherwise, so I jumped at it!

Day 10 - Listening to the stories

Spent today meeting people with Hep C in Faisalabad. In the morning a car load of people came, mother daughter son and his wife. The wife was a relative of somebody at one of the meetings in Yorkshire. 3 of the group have Hepatitis C. They had driven for 2 or 3 hours from a village in the countyside, i guess wanting treatment. All we could give them was some answers. We interviewed them about their symptoms and how they might have caught and then showed them our health education presentation. It was so very sad. We worked out that they had all caught it from the same untrained medic who worked in the village. They all used to go to see him about their everyday ills. They would always get an injection. And everybody in the village knew he reused needles. And everybody in the village went to him. Does the whole village have Hepatitis C?

Next we went to visit a family with a very ill mother, a huge abdoment filled with fluid. She was just out of hospital. She was so ill. Amongst the saddness of the family dealing with their beloved mother, looking so ill, so old. And dying aged 45. Amongst all this they ed us and made us tea and made pleasant conversation. Again we answered questions, interpreted their medical notes, gave nursing advice. We interviewed them. And educated them all.

Finally I spent a few hours with MsSB's family. She has 3 aunts with Hep C and an uncle. And one of the aunts husbands died of it. As have 2 other aunts, both in the week we have been there. And Baby, my favourite relatives mother in law did of it too. Again questions and education.



I feel so hopeless. What can I give these people? Advice about unaffordable drugs? Information about how they caught it? Its too late for them. So much illness. So much sadness. So much tragedy. I say at the end of each training session: " Right, now you know more about Hepatitis C than almost everybody else in Paksistan. You now have a duty to pass this information on. You have a moral duty. This information will save lives.

Day 9 - resting in Faisalabad

After a long drive we spent the next few days we at Faisalabad. In Faisalabad Ms SB has a family home and a small bit of land in a nearby village. Her aunt and her large family live in the house, added to by many many relatives passing by. They are not well off, but they were so genorous and kind. I quickly became very close to this wonderful warm family. We spent half the day sitting under a tree in the country, enjoying the warm sunshine and the differrent country sites. We weere busy on the phone making appointments, and relaxing a little.

Day 8 - sight seeing in Lahore

I really love Lahore, I think everybody does! It has some amazing Moghul architecture, and the whole city is buzzing with life! We spent the day looking around the magnificient Fort and mosques, finishing up in a fantastic traditional restaurant. Here's some photo's!

Day 7 – Meeting with Rotary Club

Had interesting meeting with these important philanthropist businessmen. They are eager to part fund a Project for raising awareness about Hepatitis C in Pakistan. They suggested that a small area is chosen, and a model of awareness rising is developed. This is certainly something that I will consider.

Day 7 – meeting with Chairman of Sheikh Zed hospital, and meeting Dr Alam, Consultant Gastroenterologist

Dr Altaf Alam and myself

We jumped into our cars and raced off to the nearby Sheikh Zed Hospital, a large Private Hospital with Lahore’s only Hepatology Department. There I had a brief meeting with Dr Anwar, where we talked of the epidemic happening in their country, and the difficulty thay were having taking control of it. The Sheikh Zed Hopistal have been instrumental in the drawing up of a Green Paper being considered by the Punjab Parliament. The Green Paper considers legaslisation to stop the spread of Hepatitis. This would include the disposal of sharps, the re-use of needles and the terrible situation where herbal healers or quacks promise 100% cures for Hepatitis C with the use of herbs. The newspapers and street signs are full of these, bringing false hope and exploiting the poor.

I then spent time talking to Dr Altaf Alam Consultant in Gastroenterology. We discussed the difficulty in giving health promotion campaigns with a country with one of the lowest levels of literacy in the world. He shared with me some of the leaflets and posters that they have developed. He was a kind and interesting man, but obviously overwhelmed by the epidemic. He invited me to speak to the Dr’s next Friday at 8 a.m. He also promised to show me around the Gastroenterology Ward so I could see the epidemic for myself.

Day 7 – Giving a lecture to BSc Nursing Students

After meeting Professor Husnain I met Kauser Parveen. She is a highly inspirational woman who is the Principal of the College of Nursing at the Allama Iqbal Medical College in Lahore. Amazingly enough we were both studying at the Queen Margaret College, Edinburgh at the same time. She was doing her MSc in International Health, and I was doing my original nursing degree! Small world!

Kauser Parveen has developed a degree-nursing programme in Lahore from scratch. This is almost unique in Pakistan where, until recently, nurses were seen as the lowest of the low, and a totally unrespectable career for a woman. The training was minimal as were there responsibilities. By examining curricula internationally she has designed an excellent 4-year programme for nurses. It is now in its second year, and there are plan to design an MSc and MA course to follow on. I met some of her ambitious young nurses, and was inspired by their knowledge and enthusiasm.
I delivered a lecture to over 100 nursing students, lasting about an hour, on the basics of awareness, prevention and treatment of Hepatitis B and C. I do hope it went down well!

Day 7- Meeting with Professor Syed Sibit-u-Hasnain

We were met by a welcoming committee, made up of Dr Sohail Saqalin the hospital nursing superintendent and a couple of men in turbans and uniforms. The door was opened for me and I was swept into the building, accompanied by Dr Sohail Saqalin I felt like a visiting dignitary, not just a nurse from West Yorkshire. As we walked along to the door of the medical school Dr Sohail Saqalin said, “You can give a lecture?” I swallowed hard, quite unprepared, and said “Yes” with a confidence I did not feel!

We were brought into the office of Professor Syed Sibit-u-Hasnain, and sat across from him in his large desk. He had a meeting to go to in 20 minutes, and so I had a very short time to learn what I could from him.

In Pakistan expert such as Professor Husnain have built up a wealth of knowledge of treatment of Genotype 3 Hepatitis C, and I feel that I can learn a great deal about Hepatitis C treatment for him.

In Pakistan it is known a Kala Jarkhan or black jaundice, perhaps because it is like the Black Death out here, or perhaps because of the change in skin pigmentation that occurs due to the poor metabolism of melanin stimulating hormone.

The history of Hepatitis in Pakistan has been traced to the pricker used to test for reaction to the smallpox virus mass vaccination programme carried out by the WHO. When we think how much compensation the Skipton Fund gives to people infected by with Hepatitis C by the NHS, you would think that the world would take some responsibility for the spread of this terrible disease.

The spread has been increased by the use of glass syringes, and a cultural proctice common amongst women of up to daily Vitamin B complex injections, a placebo that was supposed to act as a tonic.

One major worry is the 40% of clients who have no clear mode of transmission, ie no major medical treatment, no blood transfusion. Perhaps it is these people who have been infected by barbers, therapeutic injections, circumcision, baby head shaving and other cultural practices, which can transmit the virus if sterile equipment is not used.

A Hepatitis C Antibody test is performed. Similarly to the International Experience, approximately 25% of people clear the virus, and so a PCR test is done to find out if the infection is chronic or acute. The PCR test done is a Viral Load. The results of this can then be used to predict treatment results. A low Viral Load prior to treatment can predict better results, and it can be used as a baseline to predict success whilst on treatment.

Pegylated Interferon is expensive, and has no advantage over standard interferon for people with Genotype 3 (unlike with Genotype 1) and so standard interferon is used in treatment naïve people. It is used at a standard 3 million i.u. 3 x week with weight based Ribavarin. Pegylated is only used in people who have relapsed after treatment. Liver biopsies are not indicated, which is understandable as the treatment has a high success rate and the disease has a high probability of causing cirrhosis. And liver biopsies have risks and are expensive. Instead good quality ultrasound is used to detect any gross changes, and LFT’s are examined.

The Viral Load is retested after 8 weeks, and if a 2-log drop occurs successful SVR is predicted. If this does not happen consideration is made for a 48-week treatment course. He told me about a client who after not achieving SVR continued on treatment for 120 weeks, and finally did achieve SVR!

One important piece of information that the Professor told me that his results are showing a poorer SVR after 12 months than had been expected from International Literature, even with a PCR negative at 6 months.

Due to the amount of Hepatitis C in Pakistan, and the length of treatment it is here there has been a huge rise in cirrhosis with all it attendant problems of bleeds varices, encephalopathy, ascites and jaundice. It is now the biggest source of hospital admissions, where it used to be cardio-vascular diseases. And the number of cases are rising and rising every year.

Day 7 – Meetings from Dawn to Dusk in Lahore

We set off from Faisalabad at 8, an hour later than I planned. We jumped in the back of the posh car we had been given and sped off. We had meetings booked all day, from 10-30 with Professor Syed Sibit-u-Hasnain, President of the Hepatology Society in Pakistan, and Principal of the Allama Iqbal Medical School. At 2 we were to meet Dr Anwar, Director of the Sheikh Zed Hospital, the only hospital in Lahore with a Hepatology Department in Lahore. We were to catch up with the friend of a patient of mine from Huddersfield who has Hepatitis C. And at the end of the day we were to meet The Rotary Club to look at funding for the future of this project. What a day we had ahead.

Our first appointment was the one of the most important one of our trip, with Professor Syed Sibit-ul-Hasnain. I felt very privileged that he wanted to meet with me, and I most certainly did not want to be late – but by 9.30, with more than an hour to go, I couldn’t see how we could make it in time. But our driver broke the speed limit, we zoomed along the motorway, wove through the mad traffic in Lahore, took a few false turns, and then, just on time, we arrived at the Jinnah Hospital, and on to the Allama Iqbal Medical School.