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.
