‘Ignorance increases the spread as HIV shows its dreadful head’ - Dennis Arthur James, Nassau, Bahamas
New Delhi: Naomi’s story from Nagaland
For a 30-year old married woman like Naomi Chopy of Nagaland, her life was in sharp contrast to the hilly terrain of her native state Nagaland, a landscape marked by dizzying heights and deep gorges. She was another face of the emancipated Indian woman, who brewed a perfect blend in her dual roles as skilled professional and immaculate homemaker.
This picture perfect story was not to have a happily lived after ending. All hell broke loose on this working Naga woman, when she was detected with HIV positive, during a group test conducted by her office, Sahara India Parivar in 2003. A life that was so full of dreams and future plans, suddenly ceased to have any meaning.
“I was shocked and depressed. I could not understand how I had contracted the infection. The zeal to live was lost with fear of being castaway by the community hounding me. Had it not been for my husband and daughter, who were both HIV negative, I would not have been able to pick up the threads of my life.
Her family and the Network of Naga People living with HIV/AIDS, a non-governmental organization helped pull her out of the quagmire of negativity. Drawing her into their fold, they sensitized her to issues relating to her own safety, on looking after her family and subsequently taking on a larger role, championing the cause of people who could be in a similar predicament like her, minus the life-giving support she had received.
Today she spearheads multiple initiatives for the network. As president of the organization she is fighting for infected people’s rights, spreading awareness and ensuring that treatment and medication are administered in a timely manner.
Ranjana’s story, a Manipuri lady from Guwahati
Naomi is not alone in these choppy waters. Ranjana Devi, a Manipuri woman from Guwahati is an outreach worker. Her story is similar, in that she too unwittingly got infected with the HIV virus but unlike Naomi, she was a victim of hate. Her carefully built life of respect and dignity was in one instant torn to shreds. Shocked at what had happened to her, the bigger shock was her inability to convince her own people of her innocence. She turned into a recluse, petrified of going out and facing the wrath of her friends or the jeering comments of neighbours she had run hundreds of errands for.
What brought both these women together along with hundreds of their brethren from their states, neighbouring villages and townships was the Red Ribbon Express (RRE), the world’s largest advocacy initiative. An ambitious project mounted by the National AIDS Control Organization and the Rajiv Gandhi Foundation in cooperation with the Indian Railways, it is a unique initiative wherein a regular seven-coach train has been ‘dressed up’ with messages, posters, banners, handicrafts and educative material related to HIV and AIDS.
Red Ribbon Express gets grand flag off on WAD ‘07
Flagged off by Sonia Gandhi, chairperson, United Progressive Alliance, on 1December 2007, on World AIDS Day, the train chugged out of New Delhi with an ambitious travel plan that aims to cover over 9,000 kms, while halting at 180 districts and reaching 43,200 villages.
The train would cut across states spreading awareness on HIV/AIDS and promoting behavioural change through counselling, training, multi-media content, exhibitions and cultural performances. The mammoth task of catering to diverse needs of a country like India where each state is marked by a different language, ethos and character, NACO has after two years of pre-planning, tied up with multiple organizations to ensure that advocacy effectively filters down to local communities.
Joining hands to spread awareness
So whether it is through the mega network of the Nehru Yuva Kendra Sangathan (NYKS) whose young volunteers fan out at every station halt to cycle down to villages, create a buzz about the arrival of the train and the numerous activities that are going to take place or it is the official support of the State AIDS Control Societies (SACS), National Cadet Corps (NCC), Scouts and Guides, Songs and Drama Divisions, Red Cross or volunteers from the National Service Scheme (NSS), all their efforts tied in to engage people, make them understand about the spreading concern of HIV and the need to know one’s status by going in for counselling and testing.
Nukkad natak, folk items and other cultural activities brought people to the railway station where at every station the RRE halted for a scheduled 2-3 days. Central ministries like Rural Development, Panchayati Raj, Women and Child Development, Information and Broadcasting, Social Justice and Empowerment and Human Resource and Development and international funding organizations like UNAIDS stepped forward to promote preventive health habits and lifestyles with regard to HIV/AIDS, particularly in remote areas.
HIV’s India face
In 1986, when the world was stunned by Argentinean soccer legend Maradona’s unnoticed “Hand of God” goal in the quarter-final match of the FIFA World Cup between England and Argentina in Mexico, India detected its first HIV positive case in Chennai. Since then, the country of a billion plus has as an estimated population between 2 million - 3.1 million living with HIV/AIDS in 2006.
With the epidemic spreading rapidly across the country, NACO was formed in 1992 to execute India’s first National AIDS Control Programme (NACP – I from1992-99) to control the spread of HIV infection. This was followed by NACP-II (1999-2006) and now NACP – III (2006 – 11) which is focusing on halting and reversing the trend of the epidemic.
Vulnerabilities of the Northeast
Alarm bells rang for Northeast India when the spread of HIV/AIDS in Manipur reached dangerous levels in 1990. The virus was largely found among Intravenous Drug Users (IDU). Manipur shares its international borders with Myanmar, a country that falls in the dreaded Golden Triangle, an area of 350,000 sq km that thrives on illicit drug trafficking taking Myanmar, Laos, Vietnam, and Thailand into its fold. These porous borders only contributed in further escalating the spread of infection..
Both Manipur and Nagaland are rated by NACO as highly prevalent states with high infection and high vulnerability. Assam too is highly vulnerable though it is low prevalence so far. The other five states of Arunachal Pradesh, Mizoram, Meghalaya, Tripura and Sikkim are vulnerable too. Against this backdrop, the time was ripe for the RRE to chug into the region and spread awareness about HIV/AIDS among the general public, especially the youth.
Stopping at pre-determined stations that are turned into nodal points for serving and accessing a cluster of pre-identified villages, the success of the RRE is evident when you see the overwhelming involvement of people at the grassroot level with blocks, sub-divisions, panchayats and the zilla parishads forming a strong network to mobilize self-help groups and mahila mandals to identify areas of concern and finding ways of addressing themJ.S. Rao, project director, Assam SACS informs that there are 10,700 suspected HIV/AIDS cases in the state. They have extensively trained medical personnel to test and counsel people without bias or discrimination. The focus has also been to bust myths and misconceptions, especially amongst those who are ignorant, who feel it can spread through touch, eating in the same plate or sharing the same bathroom.
The Northeast travel itinerary of the RRE included four districts in Assam – Kamrup, Tinsukia, Jorhat and Nagaon; Nagaland’s Dimapur district.It reached 240 villages in Assam and Nagaland directly through the six local cultural troupes engaged by NYKS that enacted street plays in markets and other busy areas in more than 940 villages. Eminent literary personalities were roped in to write relevant scripts for plays on themes that locals could identify with. Assamese playwrights like Tripurari Sharma and Alakhnandan came up with heart warming tales.
Mass media, a runaway hit
“Through the street plays, more than 229,500 people were reached in Assam and another 1,500 in Nagaland,” according to Inkhuanguang, regional director, NYKS, Guwahati.
However, there was a language problem in Nagaland as the plays were in chaste Assamese, instead of Nagamese – a creole extensively used in Nagaland. Even though the creole borrows a large chunk of its lexicon from the Assamese language, the pure Assamese language itself is not completely intelligible to the Naga people.
The three dedicated exhibition coaches of the RRE evoked warm response in places like Tinsukia, Mariani and Dimapur in the two states. The turn-out of school students was encouraging, especially in Dimapur.
Collective feedback pointed to need for greater awareness
Said Akangla Longkumer, a Class VIII student in Delhi Public School, Dimapur, “With the northeast being home to many HIV positive people, it is good to see the RRE here. It should help in creating awareness among the youth so that as we grow up we not only learn to keep ourselves safe but also share our knowledge with people.”
Father Joe Ngamkhuchung, chief functionary of the Dimapur-based NGO, North Eastern Drugs HIV Training Centre focused on the urgent need of awareness to prevent the spread of infection in Nagaland. He said, “Transmission of HIV virus through the sexual route in the state is as much as 60% and unless we step up sex education, we will see how ignorance is certainly not bliss.”
Bijano, counsellor at the Dimapur Civil Hospital and aboard RRE, admits that awareness levels inspite of aggressive campaigns and information dissemination at different levels including radio and television, continues to be abysmal. “Many people do not even know the difference between HIV and AIDS. For them both are synonymous. It is tough explaining it is not contagious and that without proper knowledge it can cause great deal of harm, translating into human indignities through cruelty, humiliation and ostracization of those whose positive status gets known.
According to statistics for 2002-07, pattern of infection in Nagaland was: sexual route (78.73%); needles and syringes (12.21%); transmission of virus from parent to child (6.03%); through blood and blood products (0.96%) and others (2.08%) Alarmingly enough, people in the 15-29 age group, account for 51.5% of infected people and number of AIDS cases jumped from 82 in 2000 to 518 in 2007.
In Assam, volunteers of the NGO, North-East Society for the Promotion of Youth and Masses (NESPYM), were appointed to guide and facilitate visitors aboard the RRE. Swarup Bhatta, who spearheaded efforts gave his feedback saying, “The response was far more than we anticipated. People came forward, asked questions, shed inhibitions and asked for private one-on-one’s to get greater clarity on how infection spreads, who is at risk and how they can ensure their and others’ safety. Unfortunately, in places like Tinsukia and Mariani where hordes of people came in at one point, we found we were not completely equipped to do justice to them.”
Gaps on account of inaccessibility of Northeast bridged, but not entirely
However in Guwahati they could give time to people although number of visitors to the exhibition was not very encouraging. JRao has outlined plans for Assam in the next financial year, saying, “We will identify places with high migrant population, IDUs and commercial sex workers along with NACO. Our primary attempt will be to mainstream people with HIV/AIDS into the societal framework, step up awareness among youth, and continue to work with high risk groups like truckers for whom Guwahati is the entry point to the entire Northeast.”
Jahnabi Goswami, general secretary of Indian Network for People living with HIV/AIDS (INP+) and treasurer, Assam Network of Positive People (ANP+), rated the RRE visit to Assam as a great success. Given the fact that the states in the Northeast are more cut-off than the other parts of India, even local NGOs find it difficult to work for long stretches because of factors like inaccessible terrain, low funding and lack of infrastructure.
She pointed out that though the RRE made its presence felt in Nagaland and Assam, a large part still remained untouched in the absence of rail networks, especially in Manipur which had the first HIV person of the Northeast and which continues to have a large chunk of infected population. Also Arunachal Pradesh, Mizoram, Tripura and Meghalaya were left out of the RRE travel map mainly due to poor infrastructure. Linked by the narrow Chicken Neck or Siliguri Corridor with mainland India, poor communication, challenging terrains and lack of infrastructure have perennially remained a problem for northeast India.
The road ahead
The RRE did try bridging many gaps and now the challenge lies in ensuring sufficient follow-up to ensure advocacy translates into testing and behaviour change which alone will bring down the rate of new infections as also ensure that the current infected get the right treatment from the medical fraternity as also from the community and family.
Following the RRE campaign, 193 Red Ribbon Clubs – 111 in Assam and 82 in Nagaland - were formed to sustain the awareness campaign launched during the RRE visit to the region.
Dr N. Kiri, project director, Nagaland SACS, agrees that efforts have to be on a sustained basis. The RRE has proved to be a great mobilizing force. The momentum must not be lost and greater penetration and follow-up is what will actually make a difference.
NACO will after the year-long run of the train come out with a detailed impact assessement report along with announcements of how they plan to act on the issues that are likely to emerge from this Bharat Yatra.