HOW IT ALL BEGAN

In 1992, I was the President of SIRMCE, India which was based in Ahmedabad. SIRMCE is the International Society for Research on Civilisation Diseases and on Environment which had its headquarters in Luxembourg. At that time we had around 100 members, including doctors, scientists, architects, engineers and planners, representing a wide range of government, non-governmental and private sector organisations. Working with many local organisations - such as the Consumers' Education and Research Centre, Womens' groups, the Rotary and Lions Clubs, and the National Design Institute, we focussed mainly on research and advocacy related to environmental health issues such as hypertension, diabetes, obesity, and the effects of pollutants. Until the Gujarat AIDS Prevention Unit was started, we had no salaried staff, but relied on our members to volunteer their time whenever the need arose.

In 1988, members of SIRMCE were startled by a report in a local newspaper which said that some HIV infected blood products were on the local market and that a few individuals had been infected by these products. We met with the Drug Controller of Gujarat State and the Consumers' Education and Research Centre, and then sent a report of the meeting to the State Government.

Soon we began to get other reports about HIV in Gujarat State and one in particular caught our attention; it stated that of 475 commercial blood donors who were screened, 420 were found to be HIV+. Although we later found that the figures were exaggerated, the situation was very worrying. A group of SIRMCE members began to meet regularly to monitor reports and discuss the situation.

In 1989, I was in London attending an international seminar and mentioned our concerns in Gujarat to a person at the seminar who offered to help us find support. She put me in contact with IPPF/London and this led to an agreement that IPPF would fund and provide consultancy services for a 2-day workshop in Gujarat on AIDS Awareness and Prevention. This workshop, held in mid-1990, was attended by specialists from all over India who were involved in HIV surveillance or prevention programmes. During the workshop, participants developed a plan of action, together with a number of project proposals. One of these was our proposal for AIDS awareness activities among commercial blood donors in Ahmedabad.

THE COMMERCIAL BLOOD DONOR SYSTEM

In 1990, the buying and selling of blood in India was a highly developed industry. Private pathology laboratories collected and paid for blood from the individual donors and sold it to the hospitals and clinics. Despite the risks involved in the commercial blood donation system, India could not afford to stop this practice since about half the blood used in large urban hospitals was collected in this way. In the State of Gujarat, commercial blood donors accounted for 30% of the total blood supply, and the State Government estimated that 28% of this blood was HIV-positive. The blood collection system in Ahmedabad. was somewhat different from other Indian cities since the commercial blood donors could sell their blood without going through any HIV screening tests. In 1990, there were only two centres in Ahmedabad which were screening blood for HIV.

Commercial blood donors were a group particularly at risk of being infected with HIV. The virus could be transmitted through the use of the unsterilised equipment in blood collection centres, and also by unprotected sex. Contaminated blood could then quickly spread the virus to the blood recipient, to sex partners of the infected person, to other donors (through the use of unsterilised needles), to blood products, and to the foetuses of pregnant women who received transfusions.

THE PROJECT

Due to the threat that the commercial blood donation system posed to the population of Ahmedabad, SIRMCE proposed to start a scheme to help protect the blood used in the city from infection with HIV. To help develop the proposal, SIRMCE invited a number of "blood donor agents" (people who act as middlemen between the individual donors and the blood collection centres) to join them for the proposal development phase of the workshop. We believed that these agents could help us to understand the situation of the blood donors and to give us access to the individuals with whom we needed to work. We also realised that if the project was to be effective, we needed to have the cooperation of these agents. The agents were very helpful. For example, it was they who suggested that the project also needed to protect the blood donors themselves from infection. At the workshop, we developed the goals and outlined the activities for the project. (See Exhibit 1)

The British Overseas Development Administration agreed to finance the project, through IPPF, for a period of 18 months and we received the first funds in June 1990. To implement the plan, we established the Gujarat AIDS Prevention Unit (GAP) in December 1990, with a paid staff of five persons (a project manager, two social workers, a microbiologist and a secretary), supported by six volunteers. We also set up a small laboratory which could carry out sero-surveillance and pre- and post-test counselling.

WORKING WITH THE BLOOD DONORS

Before developing an educational programme for people who sold their blood for a living, we felt that it was essential to understand their environment, lifestyle and working conditions. With the help of the agents, we carried out a three-month study in Ahmedabad, based on interviews with 100 commercial blood donors. The study revealed that commercial blood donors were unaware of the existence of HIV and AIDS, and knew nothing about how HIV is transmitted. They were equally ignorant about sexually transmitted diseases (STDs) or how to practice safe sex. We also learned that these people often started selling their blood almost by accident. When a young, illiterate man comes to the city in search of a job, he might meet someone on the street who tells him how he can earn money by selling his blood^./1

 

^/1For example, Bharat is a young man who started selling his blood about 12 months ago. He lost his parents when he was ten years old and his elder brother could not take proper care of him. Bharat dropped out of school and did odd jobs in the village. Then he quarrelled with his brother and left the village, moving from place to place until he settled in Ahmedabad. At the age of 20 he had no money, no home, no job, and nothing to eat. One day he met Vijay, who told him he could make money by selling his blood. He has done so regularly ever since.

Once they began donating their blood, commercial donors realised it was an easy way to earn a living, and became addicted to that way of life. Some gave blood as often as ten times a month. This made them physically weak, immobile and indolent. They ate in small restaurants near their "home" on the pavement, where a meal cost only about five Rupees (US$0.20). At other times they got food from religious organisations. Slowly they lost their desire to work.

After our initial fact-gathering study, we set up the blood screening centre to provide voluntary testing of donors for HIV antibodies. We also gave pre-test counselling to inform the donors about HIV/AIDS and the chances of being infected through unsterile equipment at blood collection centres and through their own risk habits. We then issued identity cards (with photographs) to those who were HIV-free at the time of screening. Testing was repeated at three-month intervals to further ensure the safety of the donor blood. We also made contact with the collection centres to tell them about the new system that we had developed and encouraged them to accept blood only from card-holding donors.

By March 1992, the number of commercial blood donors being regularly screened had grown from the initial 100 to 433 persons, of whom 20 had tested positive for HIV - a prevalence rate of 6%. The blood donors who tested HIV negative were aware that their good health was essential to their continued ability to sell their blood and preserve their livelihood. We also found that the identity card helped the blood donors (who tended to have lost their sense of self in the big city) to confirm their existence and it gave them a new hope in their lives. They carried their card with pride.

Those who tested positive became part of our post-test counselling programme, and they all agreed that they would no longer sell or donate blood. They understood their responsibility to the community, and that their blood would help to spread HIV and AIDS even further^/2 We also encouraged them to become peer educators and we held weekly meetings at our office to discuss topics such as HIV and STDs and how they are transmitted; the rights of commercial blood donors; the hazards of repeated donations; condom usage; and the importance of proper nutrition, health and hygiene.

 

^/2Manirum Singh.for example, came from Delhi. He was a mason by trade with a secondary school education. He knew about HIV/AIDS and said that in the State of Uttar Pradesh there were blood banks where HIV-positive donors' photographs were pasted on the walls. These donors simply move on to another city to sell their blood. Manirum Singh came to our clinic asking/or the identity card which we issued to donors whose blood tested HIV-negative. Unfortunately, Manirum 's blood tested seropositive. He accepted the fact quietly, without any show of emotion. He agreed to join us as a peer educator, and even volunteered to set up a union of blood donors to ensure they were not exploited by the commercial blood banks. He said: "Who knows, I might have contracted the infection from the blood donation centre itself." During the post-test counselling session he said that since he knew his blood was infected, he did not want to sell his blood anymore. But if he stopped selling his blood he would have to look for some other way of earning money. This was a problem for other HIV+ commercial blood donors.

Growing out of our experience, we then had plans to try to help those commercial blood donors who had tested HIV positive and who needed to find other means of earning money. One idea was to provide vocational training to help them to develop new income generating skills. Another plan was to help the blood donors to establish a cooperative blood banking system through which blood could be collected from people irrespective of their HIV status. The blood could then be screened and seropositive samples sold to research organisations involved in developing vaccines. The HIV-free blood would be sold to pharmaceutical laboratories.

WORKING WITH THE BLOOD COLLECTION CENTRES

After setting up the voluntary screening and education programme for blood donors, we then concentrated our efforts on the blood collection centres themselves. We surveyed 75 registered pathology laboratories in Ahmedabad, most of which served as blood collection centres in direct contact with the city's private hospitals and health clinics. The survey revealed that HIV awareness among laboratory personnel ^/3 was nil and most of the laboratories did not follow the official infection control guidelines or instructions for handling body fluids.

 

^/3Centres are usually staffed by one pathologist, two technicians and three unskilled personnel, who collect blood at a rate of one to ten units per day

We then began running training courses for technicians and unskilled staff, and by March 1992 had trained 30 of each. We planned to run a special course for pathologists at a later date. The training was designed to inform participants about HIV/AIDS and to emphasise the precautions they should take to prevent accidental infection - either of themselves or of their clients. Slide shows and wall charts were used to encourage discussion. Eventually, we planned to recruit peer educators from this group.

OTHER RELATED ACTIVITIES

As well as working to improve the safety of the blood supply in Ahmedabad, the GAP Unit saw the need to improve the conditions of the city's blood banks. We were also making a proposal to UNICEF to work with sex workers, their children and clients in Surat to educate them about health, nutrition, STDs/AIDS and safer sex practices. GAP staff had approached trade unions and the Gujarat Chambers of Commerce to brief them and their members on STDs and HIV/AIDS, and had begun working with the staff of the STD clinics of Employees' State Insurance Scheme Hospitals in the city to provide HIV/AIDS information and training.

Earlier in 1992, I had attended a meeting in Bangalore where a number of NGOs working in the field of HIV/AIDS had agreed on the need to form a national NGO network to share information and experience. We needed to make sure that we were all giving the same messages regarding HIV/AIDS, and we needed to offer each other help and support. I had realised that such a network needed to be replicated at the State level, so I was intending to find ways of linking up the 200 or so NGOs in Gujarat and to organise a meeting later in the year.

THE FUTURE

We were at the beginning of a very long journey towards AIDS prevention and control in India, but the achievements of the Gujarat AIDS Prevention Unit had been encouraging and significant, even if modest, in the national context. The programme had helped to ensure a safe blood supply as well as protecting commercial blood donors from HIV infection at blood collection centres. We were aware that it was not possible for a small NGO to take permanent responsibility for the voluntary blood screening of the donors, but we hoped that the Government might take the cue from this beginning and might replicate our project on a much larger scale.

But the funding from IPPF was coming to an end on March 21, 1992 and many of our activities could not be continued without salaried staff. As the end of the project drew closer, we approached other donors, but did not yet know if they could help - or when. "I felt so bad about this and so responsible for what has happened", said Dr Bhattacharya.