“It is not living differently, it is just unusual´ says seventeen year old Prakhriti Thaodem, a eleven grade student from West Imphal, the capital city of North East state Manipur. She lives with the HIV virus and has learnt to sustain it along in her life. She contracted the virus in her mother´s womb and now has learnt to live with it. ´This is normal for me as I lived on the medicines since my childhood´. ´I have lived with the virus all my life. I take my medicines every morning and night as food. All I want is not to be discriminated from other children”.
Prakhriti is one amongst the group of several children of Manipur who happen to be the second generation kids either living with HIV or have parental history. Together they stand for each other acknowledging the difference in their lives than the many other children of the country andvouch to fight ´for a life beyond discrimination and hatred´.
Kids from different backgrounds gather at a two day sensitizing workshop and consultation on HIV /AIDS to pester their demand to the state government. They are asking for adequate legal rights against fellow citizens for discriminating and making life further difficult for them. Armed with a fifteen point resolution in hand, these children either living with the deadly virus or are born to people living with HIV (PLHIV) charter the agenda to launch a nationwide advocacy campaign that will address their health, stigma, education, nutrition, disclosure and succession plans.
“I am forty eight and have lived with the virus for most of my life. But now I have a wife and a daughter who are not affected by the virus. I am cautious and concerned and take that extra effort to ensure their safety,” proudly explains L Deepak Singh, the president of the Manipur network of positive people. “I want to ensure that my daughter is not discriminated ever and she does not live with fear of being found out”.
The children and their parents along with the peer groups joined hands to press the Manipur government for ensured legal protection and adequate redressal mechanism for disclosure of personal information and security. These children were mourning the death of Kiran Bala a fourteen year old registered child (RC) living with HIV with her grandparents. She had lost her parents to the deadly disease. Yet in want of adequate nutrition while being supplemented the Anti-Retroviral Treatment (ART), she lost the battle for life. Kiran from the Leitong area of Imphal West also lost her property rights to relatives and at her death bed was thrown out along with her grandparents from the local community a couple of months back. “This happened only because her status was made public, by relatives, doctors or who so ever was responsible.” “Now that she is dead, her maternal grandparents who stood by her cannot even have legal claims on her inherited piece of land. It is a two generation loss for this family”, explains Impuri Ngayawon, a volunteer working with International humanitarian organization World Vision, that works along with the state government in advocating rights of people living with HIV/ AIDS.
A similar story is that of Simaran Nesa, a fourteen year old daughter of Suraiya Begum, both mother daughter, duo living with HIV. The mother and child had contracted the deadly virus during Suraiya´s third pregnancy while undergoing blood transfusion for some accident. They are still taken care of very courageously by her teacher husband Md. Reyazuddin in Thoubal district of Manipur. “We are aware and we are concerned for our loved ones. We love each other and we care to follow the medication in our lives in a much dedicated manner”, Suraiya says confidently. “You have to counsel others so that they learn to also live with people like us”.
The North East States have registered many more number of HIV cases in comparison to other parts of the country in the last decade. According to National AIDS Control Organization status report a small state such as Manipur has more than with twenty five thousand registered people living with HIV. Their children either affected or not, have been living in constant fear of getting identified and discriminated. Together they call for a strict legal recourse to protect their status report and live life under social protection schemes of the central and state governments.
“This is a fear based stigma in the society. People are simply scared to contract the disease and so they discriminate and ostracize. But children living with the virus are equal citizens and have equal rights. They want their parents to be healthy and working. Also they want that their nutrition to be adequate so that they can live somewhat normally and sustain the ART treatment”, explains Daisy David, the national advocacy officer of World Vision.
“We are counselling the positive people, but we need to counsel each one of us as a citizen so that they do not brand people. The anti retroviral therapy works well only when people have good nutrition and living conditions”, elaborates Dr. R.K Rosie, the deputy director of Manipur Aids control society.
The resolution calls for relaxing the criteria for the PLHIV in applying for social protection schemes, doubling nutrition for all HIV infected children under the ICDS scheme, provision of ART pension scheme, uninterrupted supply of regular medicines and ART medicines in all ART centers, DOTS centers and Primary health centers along with the second line Art for all PLHIV who are resistant to first line.
Seventeen year old Sadanand fears for his father, a jawan with Assam Rifles. “Till the time his colleagues do not know his status he is acceptable. My father is on life saving drugs as Lamivudine and Elavirenz, even while protecting the nation. Two of my younger brothers are also positive. But if we can live as a family why can´t, others give us our space”, “there is so little opportunity for us´.
Thoithoibi, five, a registered child and her mother Ebemcha Devi are locked in a legal battle over her husband´s property. Thoithoibi´s father´s family wants them dead so that they can take over the property located near the highway in Imphal. “All they want now is we die”, says Ibemcha whose husband was diagnosed with AIDs in its last stage. But she has survived and is fighting the battle of life and property by controlling it through drugs provided by the State Aids Control Society.
“There has to be some law, to protect people like us. Here we fight the battle for life and increase life expectancy for my daughter, and on the other people would not want us near them”. Ibemcha now sells detergent powder and soaps to run a livelihood.
Story of the couple Urmila and M Ibomcha is different. Their younger child Risham contracted the virus from them but their elder son is safe. Yet the fight begins at home from sibling rivalry to social acceptability to community bonding.
“The pain to live a life in isolation and discrimination for the second generation people is the cause for worry, both to the government and also to the advocates of PLHIV”, accepts Deepak Singh, the president of Manipur network of Positive people. The ART centers are few in number and people like Urmila and Ibomcha travel three kilometers to get in their monthly dose of ART. Many times the medicines might not be available and then they have to keep a track to get in their quota of the life-saving drugs made available at the ART Centers for free on a monthly basis. Because of the vulnerability PLHIV contract several other diseases and usually doctors prescribe their status on prescriptions making their status known. “So the need of the hour is for greater acceptability and integration”, adds Daisy David.
“The first generation was not that careful but the second generation living with HIV, or with family history are very sensitive. Girls and boys grow in fear of never being able to marry and lead a normal life. This is the time for neatly outlined laws to address people like us. There are more than twenty one lakh people in the nation living with HIV and more than 1.5 lakh children living with it. They cannot be termed a lost case”, adds Deepak while handing the resolution paper to the principal secretary of the social welfare and tribal affairs department of Government of Manipur.