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A TRIBUTE TO AIDS VICTIMS

A TRIBUTE TO AIDS VICTIMS
An article by E-PAO Imphal Correspondent: A Samarendra Singh

We are well into the second decade of the HIV/AIDS epidemic in India and our country is home to an estimated 3.5 million people infected with AIDS, the largest population of HIV infected people in the world. In Manipur AIDS has emerged as a serious public health concern. In fact, it is becoming a number one killer of young people in Manipur. As of February 2000, a total of 9,732 HIV positive cases, 574 AIDS cases were reported of which 131 are registered AIDS victims. Three districts namely Imphal, Thoubal and Churachandpur contribute about 85% of the total number of 'positive cases' as of February 2000. From the early '90s till date different NGOs in association with State AIDS Cell and Manipur AIDS Control.

Society (MACS) had been mounting multi-pronged HIV/AIDS prevention measures. A big enough sum has also been pumped into these outfits to take up different projects. NGOs and other Government agencies are working in the field of Drug de-addiction and took to their shoulders the responsibility of spreading the message of HIV/AIDS across the population of Manipur. A few of them took the burden of caring HIV/AIDS infected people and AIDS. They are continuing to hold workshops, seminars and other mass awareness campaigns from time to time through education and communication using audio and visual aids, wall posters, newspaper, reading materials, street plays etc. etc. Above all, the state Govt. also observed various occasions related to HIV/AIDS as rest of the world does. For the first time in Manipur, various NGOs and other institutions were observing 17th International Candlelight Memorial on May 21 across the State under the organizing committee of 17th International Candlelight Memorial, Manipur. The day was observed under the theme "Break the silence; Honour every death, Value every life" by keeping the goals of honouring those who have died of AIDS, demonstrating public support for those living with HIV/AIDS, raising awareness of opportunities to respond to HIV/AIDS, and assisting grassroot organizations in building multi-sector community support and commitments to local, National and Global efforts to end the AIDS pandemic.

What arouses the curiosity and apprehensions of this writer is  that "How far the efforts made by these NGOs and Manipur AIDS Control Society are going to be effective"? The writer notice from reliable sources that the exact number of the HIV infected persons will be much higher than the reported figures, as many HIV/ AIDS infected persons remain hidden in order to escape the deep  hurt and hopelessness that accompany societal rejection. Due to the lack of awareness and literacy among the general mass most people are with the perception that HIV infection "is a dangerous disease", a shameful punishment for past sins and that once a person has HIV/AIDS, he/she would die soon. In such a situation people living with AIDS (PLWA) chose not to disclose their status to others, fearing discrimination, physical harm or blame. Some did not reveal their HIV status for fear of imparting sorrow to their loved ones or wanting to protect the future of their dependents from social exclusion. In short the disease AIDS has already seem to have won the battle as majority of general population do not treat   these infected persons as human beings. Such an opinion among the general public and infected persons brings about a communication gap which ultimately disconsolate our collective responsibility to combat the so called "deadliest disease" of the modern world. Should we agree to remark all these as a positive outcome of our efforts made by expending a huge amount of money during the last one decade?

By suppressing all these social stigma and negative attitude towards them, Manipur network of Positive People (MNP+), now a registered body comprising courageous and hopeful infected persons was formed on 7th September 1997 aiming at promoting a sense of belonging and render necessary support and care service to PLWA's for overall improvement in their lives in general and society in general. The first of its kind in the entire northeast, the self-support group, MNP+, had been intending to overcome the constraint and limitations faced by the people infected with HIV/AIDS. The body consists of seven members in the executive Committee to look after the functioning of the organization and its services along with 70 other members with an advisor for guidance. At present, MNP+ is a member of Chennai based Indian Network of Positive People, INP+ and networking  with other state level networks of Tamil Nadu, Maharastra, Goa, Karnataka, and Pondicherry as well as Positive Women's Network, a network run entirely by women in South India. MNP+'s working secretary, L Deepak is also a member of Executive Board Member of INP+.

The MNP+ has been working with meager financial assistance from Manipur AIDS Control Society in the areas like refining a positive and giving visibility to the issues of PLWA by dissemination of accurate and up-to-date information on AIDS thereby countering fear and ignorance, sharing personal experience, information, skill and resource essential for promoting a sense of belongings and render necessary support and care services to PLWA, advocating the strong legislative measures to protect the individual's right to remain confidential. The body also does counseling, providing home-based care and referral services to hospitals. MNP+ shares information and other expertise with their counterparts based in other states through communication in papers, workshops, training programmes and regular meetings. In a bid to facilitate sharing of information, a project had approved for providing free Internet connections to these network groups throughout the country. The project will come into action very shortly.

The writer had a one to one chat with L. Deepak, secretary, MNP+, who recently attended at the Donor and Supporters Meeting of INP+ at Chennai on April 27 last. He also attended the Board Meeting of INP+ held on April 28 and 29. The chat was focused on problems and constraints faced by infected persons and MNP+'s role in caring and supporting these people. Banka, President, MNP+ and other members also attended the chat session.
Excerpts;

Samarendra: As an infected person, what do you feel the discriminatory attitude towards people living with AIDS (PLWA) in the context of Manipur?
Deepak: There is wide discrimination prevailing in our society. No longer can HIV/AIDS be viewed as a bracketed issue, affecting certain sections of society. Clearly the epidemic is spreading rapidly, affecting all strata of society and urgently requiring a response from all sectors. It is pity that when such people should be given love, care, sympathy and support they are mistreated and isolated. I personally witnessed some bed ridden HIV/AIDS patients being isolated and ill treated by even their family members. In such a prevailing situation MNP+ wants to deliver this message to the general public that as long as such stigma and discrimination continues in our society, it will be harder to tackle the epidemic. Instead they should be encourage to live openly and with dignity so as to enable in joining hands with general public in promoting the prevention of further spread of HIV/AIDS.

Samarendra: Although a huge sum of money is pumped into awareness campaigns and other preventive measures, there are fresh reports of alarming increase in the number of HIV/AIDS infected persons. Any comment of MNP+ in this regard.
Deepak: According to our own view, it is because of least number in committed NGOs, doctors, health activists working in this field. Although there is awareness among general public and infected persons there is a hardly change in their behavioral attitude. Every individual should commit to his or her moral and behavior to retard the rate.

Samarendra: What do you feel about the present health care facilities for persons living with HIV/AIDS in Manipur?
Deepak: The present health care system for infected persons in the state is very unfortunate. There is lack of trained doctors and awareness amongst paramedical staff is also major problem. Ten beds provided in hospices are not matching with the number of infected persons who are supposed to get acute medical treatment. The state has no provision for availing medical equipments like CD 4 Count, Viral Load machine, one has to bind for Mumbai by expending a big sum. HIV/AIDS patient hardly gets medicine free of cost. And one more alarming situation is the claim made by blood banks in the state that all the blood in these banks are 100% safety. MNP+ strongly deny their claim, because these blood banks do not test for Hepatitis C, which is also a dreadful transmitted through blood. There are also some instances of discrimination in health care institutions for instance people living with AIDS are not provided proper attention and care when they approached to these hospitals.

Samarendra: Please tell something about MNP+'s activities in the past three years.
Deepak: Apart from conducting meeting, conference and workshop from time to time, we do counseling, providing home based care and referral service to hospitals. We share and provide information on maintaining good health, nutritional requirements. MNP+ had also conducted a need assessment for PLWA on various issues including human rights of infected persons, and was being submitted to the Indian Network of Positive People, INP+.

Samarendra: Please tell me a brief account on the "Donors and Supporter's Meeting" that you had attended recently?
Deepak: The meeting organized by Indian Network of Positive People, INP+ released the report of the assessment conducted with the people living with HIV/AIDS across the country including Manipur. The first ever assessment of it its kind where people who live with the virus have themselves documented the needs and suffering of fellow people living with HIV. The meeting was attended by various international funding agencies like Family Health International, FHI, and Project Concerned International etc. on being presented the assessment report, these agencies gave their consent in extending their maximum monetary help to the needs of INP+. The project for providing free Internet connection to all the network groups across the country including ours had also sanctioned by FHI. The INP+ also presented its action plan for the year 2000-2001, which aim to give face to the epidemic with each member going out public and removing misconceptions about AIDS and PLWA.

Samarendra: What are the sources of fund of MNP+?
Deepak: When MNP+ was formed three years back at the premises of Continuum Care Project Lamphelpat with just seven members, we are financed by this care project with a monthly grant of Rs 1000 and was later increase to Rs 4000. After having registration under the Societies registration Act 1989 on 14th December 1998, NACO and Manipur AIDS Control Society, MACS extend their financial support to us. MACS is very cooperative and supportive with us, so as to say. The Project Director has also given his verbal consent in inducting one member from MNP+ in the Executive Committee of MACS.

Samarendra: Please elaborate MNP+'s future course of plans.
Deepak: We have submitted "Care and Advocacy Project, CAP" a project proposal to the MACS which is expected to implement within two or three month's time, if it's approved by MACS. Under the project we are planning to launch a mobile Home Care Service to avail the facilities of care, support and treatment from MNP+ with trained nurses and doctors for infected persons throughout al districts of Manipur. Those unfortunate PLWA residing at remote places could get our care and support with this service in the days to come. But all these depend on the financial position granted by the MACS. We are also aware of the fact that the state is facing an acute financial problem. We are exploring to hold a workshop on "HIV/AIDS, Hepatitis C Co infection" which is very related and so common in HIV infected persons. According to a London based journal 80% of Injecting Drug Users have the risk of Hepatitis infection which is a new among us in Manipur. We are trying to find ways and means to spread the awareness of it with the help of medical experts from outside Manipur. MNP+ seriously think media should play a vital role in such concerns.

Samarendra: Well, thanks a lot for sharing valuable information and we wish MNP+  all the very best in  your future endeavours.
Deepak: It's my a pleasure . Thank you!

Other Interviews:
| Hema Malini | R.K.Dinesh | L. Mema | Gajananda | Sonali |

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