By Baphinda S Thangkhiew
The World Health Organisation (WHO) observes December 1 each year since 1988 as World AIDS Day to unite people from across the world in the fight against HIV and AIDS. This day is dedicated to raising awareness about HIV infection and AIDS, to show support for people living with HIV (PLHIV) and to commemorate those who died from an AIDS-related illness. It is on this day that success of worldwide efforts to combat HIV AIDS are highlighted as well as the importance of continued support for these efforts.
An internationally recognised symbol associated with this day is the Red Ribbon. It was in 1991 that the Visual AIDS artists were inspired to design a visual symbol i.e., the red ribbon for HIV AIDS which symbolises: Care and concern, Hope and Support – for those living with HIV, for the continuing education of those not infected, for maximum efforts to find effective treatments, and for those who have lost friends, family members or loved ones to AIDS-related illness.
But simply wearing a red ribbon is not enough. The ribbon is a useful symbol attached to words and deeds that actually make a difference. Wearing it means that you are: Paying tribute to the millions of people living with or affected by HIV and AIDS worldwide; saying that you will talk about HIV to your family and friends; convincing oneself and loved ones that condoms save lives; convincing oneself and loved ones that an HIV test is the only way to find out about one’s HIV status.
This year UNAIDS launched the World AIDS Day campaign theme as —My Health, My Right. If a person’s right to health is compromised, they are often unable to effectively prevent disease and ill health, including HIV, or to gain access to treatment and care. My Health, My Right encourages people to share their views and concerns about ensuring their own right to health and to create a movement highlighting the importance of erasing health inequalities.
According to the UNAIDS data, since the start of the HIV epidemic, an estimated 78 million people have become infected with HIV and 35 million people have died of AIDS-related illnesses. In 2016, an estimated 36.7 million people were living with HIV (including 1.8 million children) and of these 1 million people have died. The National AIDS Control Organisation (NACO) in India estimated about 2.1 million HIV prevalence till 2016 i.e. 0.3% adult HIV prevalence, 80000 new HIV infections, 62000 AIDS-related deaths, 50% adult on Anti-Retroviral Treatment (ART) and 33% children on ART, accounting India as the third largest HIV epidemic in the world.
Though our state falls in the ‘C’ category, but as per NACO HIV Sentinel Surveillance, East Khasi Hills, East Jaintia Hills and West Jaintia Hills are already categorized as ‘high burden’ districts in terms of HIV prevalence in these areas. “We are sitting on a time bomb, and if our people do not wake up to understand HIV and AIDS as an upcoming epidemic, we will surpass other North Eastern states”, said one of the HIV AIDS activists. It is high time for our people to realise that the HIV epidemic in our state is distressing. As per report, the number of new detection is an average of 2 (two) persons per day. Within a span of only 18 years there are more than 3000 people who are infected with the virus. It is also a fact that the virus is no longer concentrated only among the High Risk Groups (HRGs) or the Most at Risk Population (MARP), but it is spreading to the general population. The virus has reached even places and villages where vehicles have not reached.
The Meghalaya State Network of Positive People (MSNP+), a network solely of the People Living with HIV (PLHIV) is having more than 1557 HIV positive members (male = 593, female = 836, MSMTG = 10, male child = 55 and female child = 63) and out of these, 115 HIV positive members have died.
One major issue our state is facing is denial, since HIV AIDS is often seen as “someone else’s problem”- as something that affects people living on the margins of society whose lifestyles are considered immoral. Stigma and discrimination are major ‘road blocks’ to HIV treatment, care and support and its prevention. In Meghalaya, stigma and discrimination attached with social, cultural and religious taboo seems to be an obstacle in reaching the PLHIV to come out and seek help. The social prejudices associated with HIV infection has helped increase the epidemic; thereby leading those infected and affected individuals to retreat into a world of silence and isolation. Stigma and discrimination is often layered upon pre-existing stigma concerning socially marginalized and vulnerable groups like the Injecting Drug Users (IDU), Men who have Sex with Men or the Trans-Genders (MSM-TG) and the Female Sex Worker (FSW). PLHIV may become implicitly associated with stigmatized behaviour, regardless of how they actually became infected. Hence, stigmatizing and discriminating the PLHIV makes them hesitant to come forward to seek help and to avail services provided for them.
People working directly or indirectly in the field of HIV AIDS in Meghalaya inform that stigma and discrimination happens due to ignorance, myths, holier than thou attitudes of people and lack of responsibility in spite of continuous efforts by these people to educate and sensitize the general public. Redressing the impact of stigma and discrimination on PLHIV becomes a burden as they might give in to their problems and live in depression and fear and become less engaged in preventive behaviour or deny seeking treatment or they can even spread the virus to others. Simultaneously there will be persistent decrease in testing/knowing one’s HIV status, lack of disclosure to partners/family members or others, decrease in seeking healthcare and other services, silence PLHIV about their status thus resulting in invisible epidemic and worse of all turning many PLHIV to become LFU (Loss to Follow Up).
LFU has become the ultimate challenge that service providers in Meghalaya face. As per the NACO guidelines every PLHIV who is taking ART should visit and report to the nearest Anti-Retroviral Therapy Centre (ARTC) every month for medicines and regular check-ups and testing, and every PLHIV who is not on ART or in other words the Pre-ART, should visit the ARTC every six months for the baseline and for the CD4 test. But since there is only one ARTC in the whole state, the prevailing problems and challenges still persist. Although there are three Linked ARTCs located in three districts i.e. in Jowai, Nongstoin and Tura, but all investigations and other processes have to be done first at the ARTC Shillong, then only they can be linked to these Linked ARTC. This poses a great difficulty for PLHIV as most of them come from distant places across the state, adding to the increasing number of LFU. Another hurdle is added with the latest NACO guideline, where it is mandatory that anyone who tests positive has to start ART treatment irrespective of their CD4 count.
As per the report provided by MSNP+ there are around 634 LFUs as on October 2017 scattered all over the state, and it is a prime concern as there is a risk that these people will spread the virus to others or they will be facing health problems in the future.
Ever since the first HIV cases were detected in Meghalaya, the trend of the HIV epidemic has increasingly become apparent with the changing nature of infection. HIV AIDS which was unheard of two decades ago in Meghalaya has now gained entry into our households. Hence no individual or community can afford to dismiss HIV as a condition that happens to others. The perception of most people in the state is that HIV AIDS is a medical issue and PLHIVs are patients whereas most associated socio-economic variables are barely taken into consideration. Prevalence of HIV AIDS is mostly associated with various dimensions of ignorance and poverty which not only increases the chances of HIV transmission but it also increases the sufferings of the PLHIV.
As one of the front runners of the PLHIV community has quoted, “HIV AIDS knows no barriers. It does not concern who you are, what tribe/community you belong to, what profession you are in or which religion/denomination you follow. HIV does not discriminate anyone so why should we discriminate or stigmatize anyone especially the PLHIV. Let us unite to fight against HIV AIDS and for the cause of the PLHIV”.
(The writer is a Research Scholar, NEHU Shillong)