EVERYONE RUNS AGAINST AIDS, BUT WHO WILL WALK WITH THE HIV+VE?
ANAND OBEROI
World AIDS Day is observed on 01 December every year across the globe to renew the pledge to end the destruction that HIV and AIDS have been causing. For the 279 People Living with HIV AIDS [PLHAs] in Sikkim, the day would mean very little as their fight against the disease grows weaker with the Centre having drastically slashed funds for AIDS treatment, prevention and awareness in the country. Last year the Central government cut funds for HIV/ AIDS agencies by 65 percent! Sikkim is also bearing the brunt of such drastic cut in funding, with the only Drop-In Centre [DIC] run by Sikkim Network of Positive People [SNP+], a Community Based Organisation, having struggled without funds for more than a year now. The commitment of the more aware among people living with HIV in Sikkim has managed to keep the centre open thus far, but even their spirits are now flagging as they battle not only the virus but also insensitive red-tape and illogical policy shifts.
The DIC plays an important role in counseling and reaching out to the HIV+ve, a role which cannot be emphasized enough given that the virus continues to attract huge stigma and the facts about living with HIV remain largely misunderstood. As its name explains, the Drop-In Centre is a place where HIV+ve and their families can “drop in” any time to access counseling, seek assistance and resolve problems unique to their condition. This then become one place where the HIV+ve can let down their guard and receive empathy and support without anyone being judgmental as is often the case everywhere else. Should this facility shut down, the HIV+ve will be robbed of an essential support system.
Unfortunately, if something is not done soon, the Drop-In Centre will definitely shut down. In fact, the directions to shut it down were issued in August last year itself, but the facility has somehow remained open in the hope that it will be eventually bailed out. The Department of AIDS Control, GoI, it is informed, directed AIDS Control Societies across the country to shut down DICs because it would not be funding them anymore. These orders reached the Sikkim AIDS Control Society in August 2013 since when the funding has been suspended. SSACS asked SNP+ to close down the DIC with effect from 31 August 2013. The SNP+ and SSACS have managed to keep the centre open thus far even as a proposal is pursued to keep this important facility open.
The DIC, accommodated in the STNM Hospital complex in Gangtok, has already had to suspend 70 percent of its erstwhile facilities and activities like focus meetings, pre and post follow-up, special events, printing of awareness materials, meetings and workshops between medical professionals. These were necessary intervention, but are now unavailable to the PLHAs.
The DIC has been providing care, support and counsel to PLHAs since 2008, and apart from these, has also been providing free bus passes as well as rice at BPL rates to the HIV+ve. And perhaps even more important than these has been the intervention that SNP+ has been able to effect because of the access to the DIC for the HIV+ve to share their “problems”.
For instance, the status of an HIV+ve housewife was made public by a health-worker who lived in the same locality as her. The stigma which one had hoped had reduced in the society unloaded on her and she was facing pressure to move out and was as good as excommunicated. The story reached SNP+ thanks to the access provided by the DIC and its members travelled to the area and counseled the people there and brought them around. The lady in question continues to live at the same place and the people around her are less hostile now. Such intervention are necessary; in the absence of any societal engagement, groups like SNP+ are best suited to deliver such interventions, but in the absence of a DIC or financial support [to even travel to ‘affected’ areas], they will not be able to do so.
Sikkim, of course, is not alone in this dilemma. AIDS awareness efforts across the country have been compromised by the downscaling of priority by the Centre and the inexcusable slash in funding. From a time when too much was being wasted in the name of AIDS awareness, the nation is now staring at a situation where not even the bare-minimum is being done for the already exposed. The Centre is merging the Department of AIDS Control with the Health Department and National AIDS Control Organisation is being merger into the National Rural Health Mission. AIDS control will undoubtedly lose focus with such moves, but not enough noise is being raised, and in the silence, the affairs of the HIV+ve are being compromised.
In Sikkim, with the funding pattern disrupted, the SNP+ president had submitted a representation to the Sikkim AIDS Control Society, offering to cut down expenses by 40% and requesting that the health Department extend at least this minimum assistance to keep the DIC alive. Till there was funding, the DIC used to operate on a budget of Rs. 5.3 lakh per year. The SNP+ president offered to make do with merely Rs. 3.6 lakh per annum. The proposal was forwarded by SSACS to the Health Department in September 2013. The concerned officials agreed that the DIC needed to be maintained and endorsed it within a month. But all that remains on paper and where clear commitments should have been made, the babudom has typically remained noncommittal and passed the buck.
“We want to keep the DIC open since it is the only major support group for PLHAs in the state. We had stated that we will keep staff at minimum wages and also manage the DIC with only Rs. 30,000 per month. If this assistance was provided, it would be a boon for the PLHAs of Sikkim,” stated the SNP+ President.
He added that even with all the paper works and formalities completed, apart from paying the rent for the DIC, SNP+ has still not received any staff as approved, nor have they received any confirmation on the funding.
“We use the DIC to provide direct care and support to the PLHAs of Sikkim through SSACS. Now, the matter has already been approved by the state government, however apart from distribution of rice at BPL rates which we are also carrying out through volunteers and staff who are still not being paid, we are losing out on extending other facilities,” states the SNP+ President.
Dr. Uttam Pradhan, Project Director SSACS informs that his office had forwarded the information for necessary action to the Health Department, which in turn forwarded the matter to the National Rural Health Mission.
On 09 October 2013, the Chief Secretary had issued a note of approval where it suggested “directing the NRHM Cell to support this institution and also explore the possibilities of maintaining the same in the near future”.
“NRHM has still not responded positively for more than a year now and if this continues the only CBOs for PLHAs in Sikkim will not be able to carry out what it was actually its vision. On World AIDS Day we once again request the Health Department and NRHM to look into this matter at the earliest since sustaining a support system for PLHAs is extremely important. Even with fund cuts we are still providing ARTs to admitted patients,” appeals the SNP+ President.
202 of the 279 People Living with HIV AIDS in Sikkim are members of SNP+. Of 279 registered HIV+ve cases in Sikkim at present, 157 are male, 107 female and 15 children below the age of 10 [having been born with the virus]. The death of 15 PLHAs in 2013-14 is also a reminder that HIV/AIDS remains a challenge for CBOs such as SNP+ since almost all of these people are “totally dependent” on the facilities being provided by AIDS control agencies and the government.
