USICON 2005 Urology Conference Ahmedabad 8-11 January and IC Patient Meeting in India
IICPN Foundation pioneering in India
The densely populated sub-continent of India, with over a billion inhabitants, is certainly a new cultural experience for a Western European. It is like entering a totally different world. A land of extreme contrasts: cows and bullocks roaming the dusty streets at will against a background of high-tech computer industry, camels pulling rickety carts alongside ultramodern car factories, wood fires and atomic energy, wealthy businessmen and destitute homeless, monsoons and drought, floods and arid desert. A country of Hindus, Buddhists, Sikhs, Jainists, Zoroastrianists, Jews, Moslims and Christians. A land with fifteen recognised languages and over 1600 dialects.
IICPN Foundation invited to India
The IICPN Foundation had been specially asked to undertake the journey to India to help raise awareness of painful bladder syndrome/interstitial cystitis among urologists and at the same time help the patients get a support group off the ground. Jane Meijlink reports:
“It was a long journey to Ahmedabad via Bombay where I had my first taste of Indian heat and Bombay humidity while changing planes in the middle of the night. The city of Ahmedabad lies to the north-west of India in the state of Gujarat, only an hour’s flight from Bombay. Fortunately for me, January is the coolest time of the year, with temperatures varying from very hot in the middle of the day to chilly at night. It is also the dry season of the year with the rainy monsoon season occurring for four months in the summer. Throughout the dry season, the city and surrounding region are intensely dusty since many roads are simply dirt-tracks and passing vehicles, scooters and rickshaws throw up clouds of penetrating dust. The monsoons turn everything to mud and floods.
Staying with an Indian family – the family of the urologist and IC expert Dr Nagendra Mishra – was a unique opportunity to gain a much deeper insight into the Indian way of life and social customs than you could ever obtain staying in a hotel. I spent many hours discussing Indian life with Dr Mishra’s wife Ranjana, his children and his father. Ranjana explained the role of women in Indian society today, about the structure of society and the significant role still played today - especially in rural areas - by the caste system, although this is now legally forbidden. This, together with her experience in voluntary work as co-founder and organiser of a charitable foundation for the mentally handicapped, gave me valuable background information for my contacts with the IC patients in India and a deeper understanding of the specific social problems they face.
Nothing – not even a period spent living in West Africa – had prepared me for the extreme poverty in India and the sheer scale of this poverty. Vast numbers of people live in squalid, abject poverty along the road verges amidst the garbage heaps that are a permanent feature of India’s public spaces. They huddle under shelters constructed of a few sticks and rags. When I asked what happens to them in the monsoon period, the reply was that they just die. I was taken one night around the city centre where it was impossible to walk on the pavement because it was covered with people – including children – sleeping rough wrapped up in old sacks. Disease is rampant but few of these homeless and destitute people receive adequate medical treatment, if at all.
I was taken around the Jivraj Mehta Hospital in Ahmedabad that treats the poorer range of patients. The poorest go to government public hospitals but this charitable foundation is one step up from this lowest level. Conditions by western standards are exceedingly primitive, but the staff and doctors are clearly very dedicated. The families of patients play an important role, as in all life in India. Since in this particular hospital no meals are served, the family of the patient will normally bring all food, although a simple low-cost canteen is available for those whose families live too far away. Very few patients in India have medical insurance and consequently have to pay for treatment. The cost varies according to the standard of the hospital, with free treatment available in the very basic government hospitals. The higher up the income scale you go, the better the available treatment and facilities. This charitable foundation hospital has a facility for providing free or minimal cost medicine for those who are unable to pay.
Life expectancy in India is around 63 years. But of course higher income brackets live longer and the poor and destitute very much shorter. Lack of hygiene, adequate sanitation and safe drinking water are a major cause of disease.
The most commonly found diseases in India include malaria, leprosy, plague, filariasis, tuberculosis, diarrhoea diseases and sexually transmitted infections which are rife. India is home to almost half the cases of tuberculosis in the world and bladder tuberculosis is a common diagnosis for painful bladder conditions. As a matter of interest, I asked my hospital guide about HIV/AIDS and was first told that ‘this is very rare in India’. When I pointed out that international health organisations are extremely concerned that AIDS in India is currently rocketing, he then admitted that ‘nobody talks about it here, it is a taboo subject’.
Meeting with IC patients
The day before the start of the urology conference, a meeting was held of around 10 IC patients accompanied by their family members in the waiting-room at Dr Mishra’s clinic. With Dr Mishra translating, they discussed their specific problems and wanted to know about the IICPN Foundation and how we could help them. The unavailability of treatment is a major problem and where many patients are concerned diagnostic procedures and treatment are unaffordable. Hydrodistention is very commonly used as a treatment in India. If this fails, amitriptyline is the first drug tried. Dr Mishra is now having DMSO made up in India and it is hoped to attract pharmaceutical companies to find distributors for their products in the sub-continent. But the cost will always be a problem. Cheaper solutions have to be found for countries such as India.
Few public toilets
IC patients in India have an additional problem because there are very few public toilets to be found in India. It is still the custom to perform these natural functions in the open air: a simple matter for men but more of a problem for women. One patient told me that she was once so desperate on a railway station that she was forced to squat on the edge of the platform to urinate. She found it very distressful and embarrassing to have to do this. Other IC patients told similar stories and said that their only solution is to go out without underwear under their saris so that they can squat on the ground when no toilet facility is available. They feel this is really degrading for them. Furthermore, talking about bladder problems is still very much a taboo subject in India, according to the patients. Their social life is greatly affected and they feel very embarrassed when visiting relatives.
Lack of awareness
The patients and their relatives complained that most urologists in India were very sceptical about IC and that there was little or no awareness. They told me that gynaecologists tell them that IC does not exist. They were very thankful that the IICPN Foundation had come to help them.
The Indian patients are keen to have a support group, but after talking to the patients and doctors it was clear to me that this would need to be approached quite differently to the west. There is still a high level of illiteracy among women, particularly among the poorer classes. Since very few patients have any access to a computer, use of internet will consequently be reserved for the very few and not a solution for a support group as a whole. A telephone contact network and helpline could be a solution to this kind of situation along with a newsletter (at least for those who can read) to keep members informed. The patients/members could also play a role in raising awareness by helping to distribute information on IC to hospitals, medical centres, doctors and district nurses. Where women patients are concerned, manning an info stand at a conference for example presents a difficult social problem and is not likely to be approved by their husbands and relatives. Some other solution would have to be found for this. Everything needs to be geared to the Indian situation, but an Indian support group could form a role model for other countries with a similar social background or countries where women have restricted freedom for social or religious reasons (e.g. some Middle Eastern countries). The problem of language among the patients means that the basic leaflet needs to be available in at least English and Hindi, and preferably other regional languages. It is already available in Gujarati for the state of Gujarat. Where doctors and other medical professionals are concerned, English is the language used professionally. The main problem right now is to raise awareness among the medical professionals at all levels to ensure that patients get the correct diagnosis and treatment. Since the support group now has a contact address, doctors can refer their patients to the group.
The patient meeting
The next four days were spent at the national urology conference, USICON 2005, in Ahmedabad. Since it had not been possible to obtain a complimentary booth on this first occasion, the pharmaceutical distribution firm Dr Reddy’s Laboratory Ltd kindly gave us a free table on their booth (known as a ‘stall’ in India). They also printed the IC information material free of charge. Since the exhibition had been accommodated not in the air-conditioned Grand Bhagwati conference venue but in a tent on the car-park, the temperature soared by the middle of the day! After one day of suffering this oppressive heat in European clothes, I changed to Indian dress and felt considerably more comfortable!
An IC patient and her family visiting the conference exhibition
The IICPN Foundation table with Jane Meijlink behind the table and Dr Nagendra Mishra on the right
The IICPN Foundation info table was a great success. Whereas the Indian urologists were initially somewhat sceptical, within a day their attitude had completely changed. It was clear that there is a small core of urologists (and gynaecologists) who are able to attend international conferences and who consequently have some knowledge of IC and a few patients, but that those who do not have these contacts know little or nothing. Many doctors stopped to discuss the situation and said that they believed that many patients with painful bladder symptoms were being automatically treated for tuberculous cystitis and that even if the treatment was not having any effect, the same treatment was still being continued. They felt that by raising awareness of PBS/IC, many more patients would receive the right diagnosis and that many urologists need to re-think their approach to patients with painful bladder symptoms. It was interesting to hear from the Indian doctors that patients in India are more compliant than in the western world and less likely to default on treatment. Doctors are still held in great respect and patients do what the doctor tells them.
We distributed a large number of information packs, with some doctors taking extra packs for their colleagues. More information packs will now be distributed to hospitals and medical centres. The organising committee for the conference next year was keen for the IICPN Foundation to continue its missionary work next year in Varanasi.
Painful Bladder Symposium 2007
During the conference in Ahmedabad, it was announced that the urological society of India had decided to organise a painful bladder symposium at its conference at the beginning of 2007. There was also mention of possible regional symposiums in the coming year. This was wonderful news and an indication that real progress is being made. The information table also drew the attention of pharmaceutical distributors to the problems of PBS/IC and hopefully this will eventually lead to the availability of more products. It is now essential for a list of cheap generic treatments to be compiled to ensure that treatment is also within the reach of the poorer levels of Indian society.
Coping in India
How did I cope as a patient in India? The shortage of public toilets makes it a problem. The need to move around makes you tend to drink less and this can soon lead to dehydration in these temperatures. The poor hygiene and sanitation mean that you have to be extremely careful about what and where you eat and only drink bottled water. By staying with a family, it was possible to control my diet so as to avoid unnecessary attacks of diarrhoea. My rice was cooked separately in bottled water, my tea was made exclusively with bottled water and I carried bottles of water with me everywhere! Since I am fortunately able to eat bananas without adverse effects on my IC, I virtually lived on these along with the rice! Fruit is available in abundance but if you are an IC patient with an acid intolerance, this is not very helpful! As emphasised to me by the Indian IC patients, the traditional Indian diet of spicy food is extremely problematic for those with PBS/IC, not to mention if you suffer from IBS into the bargain. Loose clothing is advisable in the daytime heat and I found the traditional salwar kameez (long tunic and loose pants) very comfortable and in keeping with Indian social customs. A light shawl or veil is handy to cope with the dust, particularly if you make use of the 3-wheel motorised rickshaws with their open sides. Pollution and dust can cause eye irritation so if you are prone to this (i.e. Sjögren’s syndrome patients) take all eye drops with you, particularly if you use preservative-free eye-drops since these are not available. In January, the temperature in Ahmedabad fell dramatically in the evenings and warm clothing was needed. In summer, however, I was told that temperatures can soar to 45˚C. Mosquitoes and the risk of malaria mean taking a prophylactic drug, starting in advance and continuing for 3-4 weeks after arrival home, and keeping as much of your body covered as possible while in India. I also received inoculation for hepatitis A and a DTP booster several months prior to going to India.
Many thanks to the Medtronic Foundation for sponsoring the travel and Dr Reddy’s Laboratory Ltd for supplying the free table and printing the information. Special thanks to the family of Dr Nagendra Mishra for looking after me so well. This was an extremely worthwhile project. Not only was awareness among the urologists substantially increased, but by seeing everything for myself and by having the opportunity to talk to Indian people and patients in person, I learnt far more about the situation for IC patients than I could ever have done in any other way.”