Orissa struggles to tackle HIV, progm suffers

By-Manish Kumar

Bhubaneswar, Dec 1: The National AIDS Control Programme launched after the first Human Immuno Deficiency Virus (HIV) case was detected 29 years ago to ameliorate the condition of the victims, but the social stigma continues to humiliate the group till now.

Investigations by this newspaper have brought to focus several dark sides of the healthcare institutions which instead of helping people living with HIV are actually turning their lives miserable. Many discriminatory incidences in renowned government hospitals, which are often the hope for many HIV people for their treatment, have surfaced.

Although clear norms are set by the National AIDS Control Organisation (NACO) to ensure extreme confidentiality of people living with HIV, government hospitals like SCB Medical College and Hospital seem to be blatantly flouting guidelines.

According to NACO, doctors are advised to write ‘immuno compromised’ on prescriptions instead of HIV positive to shield the patient’s HIV status but such norms are ignored.

I got hold of  a prescription issued by SCB Medical College, Cuttack, (in the picture) to an HIV positive patient, which discloses his HIV status. The prescription states ‘HIV positive diagnosed since 2008’. Ironically, the doctor prescribes medicines for purchase from medicine stores without consideration for consequences such as embarrassment the patient may undergo.

Sheetal Mohanty (name changed), an HIV positive person, said, “Many doctors and hospitals write clearly on prescriptions as ‘‘HIV positive patient’’. We show this to medicine shops where we have to face strange gestures. Our relatives unaware of our medical condition may find the prescription and consequently, we stand a threat of social stigma.”

Like Sheetal there are others who have faced such situations. However, people working in the field say there are problems galore for people living with HIV when they confront strange attitude from even healthcare professionals.

Activists working in this sector say despite projects to eradicate discrimination at hospitals such issues continue to persist.

Sushmita Sahoo, project coordinator of Kalinga network for people living with HIV, told me “We take persons with HIV to Capital Hospital or SCB Medical College for treatment. The doctors do not deny that they would not operate such patients. They promise to try their best but pass the buck on to someone else. Often doctors at Capital Hospital refer patients to SCB and doctors at SCB also redirect such patients to Capital Hospital. In such cases HIV positive people are left to run from pillar to post for treatment.”  

The problem arises when the doctors have to conduct surgical operations although general treatment at clinics is not an issue, said Sahoo, adding not all doctors are alike. Some operate on HIV positive persons but there are many who are reluctant to operate on them.   

When contacted, SCB Medical College superintendent PK Rath said, “We will look into the matter. A minimum protocol must be followed. I will advise the errant doctors to ensure they don’t write such things on prescriptions in future.” 

AIDS Control Programme under threat in Orissa

Despite the National AIDS Control Programme (NACP) having been operational in the state since 1997, there are problems galore on the way of its interventions these days. The problems are expected to grow due to the structural changes the agencies associated with NACP are undergoing.

In March 2015, the Centre slashed National AIDS Control Organisation’s (NACO) budget by 22 per cent. The move followed withdrawal of NACO’s autonomy and its merger with the central health ministry. Worsening NACO’s woes, many international organisations also withdrew their financial support to NACP. The impacts of such changes are now felt in the states, including Orissa.

NACO has been spending most of its funds in prevention and awareness strategies implemented by its state-level organisations such as Orissa State AIDS Control Society (OSACS). The most popular programmes of OSACS – distribution of free condoms and awareness campaigns through ground-level health volunteers – are now being hit by funds crunch and the changes formulated at the central levels.

  

“We signed a contract with OSACS last year to work in targeted intervention programmes to demonstrate among high-risk groups and the masses how to prevent HIV infection from spreading. But we hardly get free condoms from OSACS, and the financial support is also negligible. But, undeterred, many of us still work only with the aid of some private agencies and NGOs,” said Meera Parida, chairperson of All Orissa Third Gender Association.

“With scanty funds to pay ground-level health workers – who often comprise female sex workers, the third gender and others earlier engaged in sex work – many of them are found returning to their earlier unsafe trades,” added Parida.

Loknath Mishra, a veteran activist from Gopalpur under Ganjam district who has been working in this sector for the last 21 years, said: “The whole programme is now under threat. There are cases where such health workers have not been paid for six months. So they have no option but to quit as health workers.”

“In the most affected district of Ganjam, there are around 3,500 villages. OSACS has reached just 100 of them. Only increased awareness and education can prevent the rise in HIV infection, but such programmes now face threats,” added Mishra, who has founded a shelter for children with HIV in Gopalpur.

Officials at OSACS also express helplessness. “The recent changes have posed significant threats to the whole programme. The funds that NACO earlier sanctioned directly to the state units are now routed through the state government treasury, and we have to apply to get the funds from there. We are able to get just our salaries from there, but our programmes at the ground level do get affected,” said an OSACS official requesting anonymity.

Under, NACP, now in its fourth phase, the new rules mandate that the state AIDS societies would get 25 per cent of the funds from the state government, unlike earlier when they got the whole funds directly from NACO. Experts are wary of the new funding channel facing bureaucratic hassles. Besides, though activists have been urging a merger of National Health Mission with NACP since 2012, no steps have been taken in that direction yet. 

Experts warn that a gradual crippling of the programme and laxity of the authorities concerned, if left unchecked, could lead to cases of infection increasing rapidly. Such fears have proven true in countries like Philippines, they say.  

However, state health secretary Arti Ahuja assured during a public function Tuesday that the state government would extend full support for successful execution of NACP in Orissa so that there is a reduction of infection, stigma and deaths to zero levels. 

Pvt clinics, testing centres biggest defaulters:

Banners and advertisements outside private clinics claiming treatment for HIV and diagnostic centres offering HIV testing facilities may attract many visitors. These claims for treatment of viral disease, however, turn out to be hoax when it comes to following the prescribed norms of National AIDS Control Organisation (NACO). The national body seeks to ensure uniformity in prevention and treatment strategies of the viral disease.

According to experts, private clinics and diagnostic centres have little to offer to people living with HIV. Many working in the field of HIV advocacy and control believe private clinics/diagnostic centres are doing more harm than good in controlling the disease.

Such treatment facilities go against the norms set for regulated HIV testing. NACO prescribes pre and post testing counselling in cases of HIV test done at diagnostic centres, which is non-existent in some private clinics. Consent of patient for HIV testing was not taken by such private hospitals.

The fact has been vindicated by many who have opted for private facilities.

“I was suffering from a kidney stone ailment and the doctor told me to go for surgery for which he asked me to undergo several tests including HIV. However, a pre-counselling was never done in this case. I was surprised when I donated blood recently. The blood bank held a comprehensive couselling over HIV,” said a regular blood donor here.

Experts suggested dependence on trusted ART centres for HIV treatment. Rewati Raman Rahul, a public health expert, said, “ART clinics are most reliable medical centres for HIV treatment. Doctors there are trained by concerned authorities on changed combination of drugs and are well-informed about the latest development in the field,”

An HIV activist said, “Some private clinics use preliminary HIV testing facilities like ELISA, which could yield faulty results. Confirmatory tests are done at government hospitals to get only confirmed cases. The mandatory prophylaxis and treatment norms to prevent transmission of virus from HIV positive women to their children are not being adhered to in private hospitals.”

NACO has issued such guidelines in 2010 to prevent transmission of virus from pregnant women to their children. The Orissa State AIDS Control Society (OSACS)  also affirms that private players have little role in HIV treatment.

Talking to me, OSACS additional project director Chandrika Das said, “I advise people living with HIV to consult trusted ART centres at government hospitals. Counselling and other services are available at government hospitals through blood banks and integrated counselling and testing centres (ICTCs) which have reliable testing and counselling systems for the needy.”    

Such claims have been vindicated by some state AIDS societies. According to a study conducted by Delhi state AIDS control society in 2014, private hospitals and nursing homes were violating the NACO norms.

The study said, “Private hospitals declare an individual as HIV positive on the basis of a single HIV rapid antibody test, whereas the National ICTC guidelines recommend a series of rapid antibody HIV tests to declare a person HIV infected.”

Viral load test still a utopian dream in Orissa

Notwithstanding 36, 617 HIV cases in the state and a 9 per cent share in the country in new infections, the crucial viral load test for people living with HIV is still not available in the coastal state. The test which helps in calculating the amount of HIV available in the blood of the affected persons often helps in administering the right combination of drugs to directly attack the causative organism of any disease rather than giving symptomatic treatment in the absence of a key blood report.

“Saddened by the affairs, people living with HIV are now forced to move to Kolkata which is the nearest centre where testing is done. Many poor people never bother to go for such crucial tests as the whole exercise of travelling to a different state and other expenditures are not affordable,” said Prabhasini Mishra, chairperson of Kalinga Network of People Living with HIV which is active in Khurda district.

Experts opine that absence of such reports cascades the woes of people living with HIV. Dr Rewati Raman Rahul, a public health expert, said, “In the absence of a report, doctors give medicines on guess. Many a time, the root cause, which could be higher viral load, is not targeted, making the given treatment futile.”

Unfortunately, test centres managed by National AIDS Control Organization (NACO) number only six in the whole country. The Centre has no plan to open new units citing high cost of establishment of testing units.

I recently filed an RTI with the Central government asking if they have any plan to open such a centre in Orissa. The reply is still awaited. Meanwhile, the Central health and family welfare ministry has forwarded the RTI plea to NACO.

It is not only a lack of viral load testing centres in the state. Other problems relating to drugs and testing are also galore. According to people working in this field, managing existing infrastructure is still a problem.

“Once in a year we get news about shortage of drugs at ART centres, although counselors and doctors ask HIV persons never to miss the medicines as such things can cause drug resistance. Also at least once or twice, the CD4 blood testing machines get defunct in hospitals affecting the treatment cycle,” said Sushmita Sahoo, who works with the Vihaan Project which works to control the disease besides working towards advocacy, legal aid and interventions in cases of medical and social stigma.

The defunct machines of CD4 testing tools are also reported from Ganjam district which accounts for 35% of the total HIV cases in the state. Nevertheless, activists working in the field said counseling services at government hospitals have been satisfactory and yielded good response including persuading high risk groups to undergo treatment.

The change makers in Orissa

Working from a small office in a three-storied building in Nayapalli, Biswa Bhushan Pattnaik, project director of SAATHI (Solidarity & Action Against the HIV Infection in India), has been working with ‘Project Pahchaan’ which has set a goal to generate awareness among high risk groups about the viral disease and ways to prevent its infection.

“We work with high risk groups like transgenders, hijra community and men who have sex with other men. Members of such risky groups need proper education about the hazards. We have been screening films on such issues, having direct communication and other means to change the attitude of such groups and also the society,” Pattnaik told me.

Such training and communication, according to Pattnaik, help bring attitudinal change in society. “Often, we go to villages where we screen films. We elicit reactions of villagers after the film show. We have seen change in their mindset. We ask simple questions like ‘‘would you buy a vegetable from a vendor who is HIV positive.”     

Another inspiring person I spoke to was Sushmita Sahoo who has been working with the Kalinga Network of People Living with HIV. She is associated with people living with HIV. Her work involves direct advocacy of issues related to them with the government and healthcare institutions. With the support of her organisation, she has been intervening in cases of social stigma and discrimination.

When asked if she gets perturbed seeing the overall fear among people towards the disease, she said, “Not at all. I have been working with HIV positive people for long. I do share food, living space and often engage with them in counselling. We exhort them to stick to their treatment cycle. I believe, like doctors treating them also need to be friendly with them.”

Like people working in Bhubaneswar, there are many in other parts of the state who have dedicated a big part of their life fighting for the rights of people living with HIV. Loknath Mishra, a veteran fighting for HIV rights from Gopalpur in Ganjam district for the past 21 years, is the founder of a children’s shelter in Gopalpur which works for kids living with HIV. The shelter was set up with the support of erstwhile Ganjam collector V Kartekeyan Pandian, now private secretary to the chief minister.

Overwhelmed by the support Mishra and his institution have been providing for kids with HIV, he said, “All kids living in the shelter home are attending schools. It would have been difficult for them to go to schools had they resided in their locality with HIV status. We fought for the issue and ensured the kids live a dignified life without discrimination. They play with each other after school and adequate care has been taken for them.”

Besides private interventions, Orissa government seems to have taken some measures to tackle HIV. The state is among the few in the country which covers people with HIV under some pension scheme. The state government covers people with HIV under its Madhu Babu Pension Yojana.  

Besides private interventions, Orissa government seems to have taken some measures to tackle HIV. The state is among the few in the country which covers people with HIV under some pension scheme. The state government covers people with HIV under its Madhu Babu Pension Yojana.