Treatment@10
Report
Journey of 10 years of
ART Programme in India
2004-2014
Organized by:
National AIDS Control Organization (NACO),
Department of AIDS Control,
Ministry of Health and Family Welfare, Government of India
&
National Coalition of People living with HIV in India (NCPI+)
and partners
About NACO
NACO envisions an India where every person living with HIV has access to quality
care and is treated with dignity. Effective prevention, care and support for
HIV/AIDS is possible in an environment where human rights are respected and
where those infected or affected by HIV/AIDS live a life without stigma and
discrimination. For more information please visit: www.naco.gov.in
About NCPI+
National coalition of people living with HIV in India (NCPI+) is a national coalition
of People Living With HIV (PLHIV) individuals and organisations with the vast range
of experience and expertise from grass root to policy level. NCPI+ is based on the
principle that, this long experience and expertise must contribute constructively
and meaningfully in the policy and programme decisions to bring positive change.
NCPI+ was built from a two-day national consultation, with PLHIV representatives
from 26 states including five founder members of the PLHIV movement in India and
technical experts like lawyers, journalists and doctors. For more information,
please visit: www.ncpiplus.net
Documentation: Citizen News Service (CNS): www.citizen-news.org
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Table of content
Inaugural session
Session II: Experience sharing by key players in success story
Session III: Voices of the communities, DAC, donors, other
stakeholders
Panel discussion
Annexure 1: programme agenda
Pledge taken by representatives of all PLHIV networks in India
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4
9
19
25
29
30
Inaugural session
India’s decade long journey of rolling out antiretroviral therapy (ART) to people
living with HIV (PLHIV) across the country began in April 2004. Now ten years later
with over 768,000 PLHIV on ART, India has not only made appreciable progress in
responding to this dreaded disease but also learnt lessons that will inform policy
and improve the response further.
To mark the completion of ten years of rolling out ART in India, the National AIDS
Control Organization (NACO), Department of AIDS Control (DAC), Ministry of Health
and Family Welfare, Government of India, partnered with the National Coalition of
PLHIV in India (NCPI+) to organize this daylong learning event in Delhi on 7th April
2014 (World Health Day). This event, Treatment@10, brought together a range of
PLHIV networks from across the country, apart from other stakeholders in India’s
fight against AIDS. Treatment@10 indeed became one of the highpoints of
genuinely implementing the principle of greater involvement of PLHIVs (GIPA) with
different PLHIV networks and NACO together convening this learning event.
It was perhaps the first of its kind event to bring 7 out of 10 past heads of any
national health programme on one platform (in this case of NACO). Treatment@10
was attended by those who contributed to rolling out ART in the past decade,
prominent among whom were: Dr VK Subburaj, Secretary DAC and Director General
of NACO; Dr RS Gupta, head of Revised National Tuberculosis Control Programme
(RNTCP); Mr JVR Prasada Rao, senior advisor to the Executive Director of UNAIDS;
Ms Shailaja Chandra, former head of NACO; Ms Meenakshi Dutta Ghosh, former
head of NACO; Ms Sujatha Rao, former head of NACO; Mr Chandramouli, former
head of NACO; Dr SY Quraishi, former head of NACO; Mr Sayan Chatterjee, former
head of NACO; Mr PL Joshi, additional project Director, NACO; Dr Damodar
Bachani, who was one of the key brains behind the ART scale up; Dr Sandhya
Kabra, who scaled up CD4 testing across the country and is working on scaling up
viral load testing too; among others.
Dr VK Subburaj, Secretary DAC and Director General NACO
Dr Subburaj said that HIV control programme of India is a very successful
programme. The influenza (flu) epidemic of 1918-1919 which took 30-40 million
lives was described as "the greatest medical holocaust in history." 30 million
people have died due to HIV too over the past decade. But the response to avert
death, prevent transmission, and put PLHIV on treatment among other evidencebased approaches has made a huge difference. Engaging all key populations and
other stakeholders in HIV response was another landmark policy that contributed in
a positive way.
Dr Subburaj said that ART was another game changer in HIV response. Because of
ART drugs HIV is no more a ‘death sentence’ but just another ordinary chronic
disease. Through ART roll-out, India has averted 1.5 lakhs (150,000) deaths due to
HIV. No one should get infected with HIV now as zero new HIV infection is the aim
we aspire to achieve. Also nobody should die of HIV as ART is available along with
other support and care.
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Another significant positive contribution of HIV control programme is forging
effective partnerships. No other disease has evoked this level of partnerships
across varied sectors. Technical, financial and other partners from around the
world in India’s fight against AIDS need to be thanked as well.
This milestone to mark ten years of India’s roll out of ART is certainly not the end,
rather a long journey remains ahead of us, said Mr Subburaj. Apart from scaling up
coverage of all HIV related services we also need to look at upcoming research,
such as around functional cure, in the coming years.
Dr AS Rathore, Deputy Director General (Care, support and
treatment), NACO
We have reached about half-way on our journey to provide ART to every PLHIV.
This is a story of “From nowhere to somewhere”. Real journey of ART started in
1986 when there was a news article that some scientist in Europe had identified an
anti-cancer drug Zidovudine which was found to be active against HIV too.
Thereafter many drugs came but no drug could kill HIV. A group of medicines was
found very effective in 1996 and this was called Highly Active ART (HAART),
availability of which was limited to Western countries. A day’s treatment was
approximately costing INR 3000. Thereafter some drug manufacturers declared
that they will be providing ART at one dollar a day. So many companies came into
the market and ART prices came down. On World AIDS Day, 1st December 2003,
the then Minister of Health and Family Welfare, Government of India, Ms Sushma
Swaraj, announced a policy decision to provide free ART to one lakh (100,000).
Thereafter ART roll-out began in April 2004 onwards.
Initially ART roll-out was slow because of lack of infrastructure, managerial and
supply chain issues etc. From 8 ART centres in India in 2004, today we have scaled
their number up to 425 ART centres of excellence. ART prices too have come down
to INR 5000 per patient per annum.
HIV related stigma and discrimination has also reduced significantly. Very rarely
one reads a news about PLHIV being denied taking out water from well, or a HIV
positive child being thrown out of a school. Earlier, visas were denied to PLHIV by
several countries. India also had a policy that foreign students will be tested for
HIV when seeking admission in medical or other colleges. All such discriminatory
policies have been changed now because with ART, care and support, HIV has
become a chronic manageable disease.
There are an estimated over 20 lakhs (2 million) PLHIV in India. Almost 11.5 lakh
(1.15 million) people have actually started ART at any of the ART centres at some
point of their life. Effectively, 7.68 lakh (768,000) people are on regular ART
through 425 ART centres for firstline treatment. 8000 PLHIV have developed
resistance and have been offered secondline treatment. We are in a preparatory
phase to help those who have developed resistance to secondline too. We have
averted 1.5 lakh (150,000) deaths because of proper management of programme
and rolling out ART and HIV related services.
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India is advancing to meet the HIV related Millennium Development Goal (MDG) 6.
There have been lot of policy revisions as well. For example, CD4 cut off to begin
ART has been raised from 200 to 350, and now very recently further raised to 500.
This policy move will prevent many new infections as PLHIV on ART with CD4 above
500 and undetectable viral load will not transmit HIV as per the studies done.
Care and support centres have played a key role in providing awareness,
counselling and acting as a link between ART and the community. Over 2 lakh
(200,000) PLHIV were registered through this network and 28,000 PLHIV who had
been lost to follow up were brought back to treatment.
India made a wise policy decision to not ignore HIV prevention alongside scaling up
treatment, care and support from early stages of National AIDS Control Programme
(NACP). Currently, we aim to provide ART to 10 lakhs (1 million) people by end of
2015.
Dr Nata Menabde, WHO Representative (WR) India
If we look at the progress India has made on rolling out ART over the past 10 years,
it is almost breathtaking. India’s ART roll-out is one of the biggest in the world.
India has the second largest number of PLHIV on ART in the world. This would not
have been possible without a very high level of political commitment and without
engagement of civil society and other partners including WHO and others within
and outside of the UN. UNDP, UNICEF, UNAIDS, ILO, CDC, USAID, and many others
who have collaborated with us need a word of appreciation too for their respective
contributions in shaping India’s HIV response.
India has the third highest number of PLHIVs in the world, although prevalence is
quite low at 0.27%. India has also shown a 57% decline in new HIV infections and
29% decline in deaths due to AIDS. Since the time when roll-out of ART began in
India, many lives have been saved. Prevention of Parent to Child Transmission of
HIV (PPTCT), blood safety policies and programmes, strategic information
management, among others, are some areas where the WHO has helped India.
Phase 4 of NACP also focuses on integrating AIDS programme with health systems.
That is also a point of collaboration of NACO with WHO.
Indian pharmaceutical companies have done something extremely significant, not
only for the PLHIV in India but also for the ART therapy globally. Had there been
not enough Indian generic manufacturers, only 5% of people could have afforded
ART in the world. WHO programme is relying on Indian pharmaceutical companies
to supply ART to the world. WHO “3by5” Initiative which aimed to provide ART to 3
million PLHIV by end of 2005, was indeed able to promote, advocate and provide
technical assistance to push this agenda strategically forward.
When India made a policy decision to provide free ART to 1 lakh people (100,000)
on 1st December 2003, the WHO came forward to support this initiative and
committed to procure ART for the first year. WHO had also helped India with
training needs, as ART roll-out went ahead. WHO had then provided NACO with 10
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different experts at 10 different locations across the country to guide the roll-out
of ART. Government of India had absorbed these consultants into the NACP later.
Ten years later India has shown tremendous progress with 768,000 PLHIV on ART
through 425 ART centres across the country and 840 link ART centres established to
support drug dispensing, treatment and management of minor opportunistic
infections (OIs) etc. 17 Centres of Excellence including paediatric centres of
excellence have come up too. 30 ART Plus centres provide support to challenging
cases, training of cadres and conduct various types of operational research.
WHO technical guidelines focus early initiation of ART at a higher CD4 count. It
also recommends less toxic ART in one single pill daily and better monitoring of
treatment with viral load test. As we know Pre-Exposure Prophylaxis (PrEP) is now
an evidence-based HIV prevention option and it should be provided at least to
sero-discordant couples in India.
The HIV/AIDS (Prevention and Control) Bill 2014, which had been finalised way
back in 2006, was eventually introduced in the Upper House by India’s Union
Health and Family Welfare Minister Mr Ghulam Nabi Azad in February 2014. It has
commendable measures to further strengthen India’s response to HIV.
Measuring outcomes is very important to monitor the progress made by the HIV
response. We need to look at the issues of retention of PLHIV in care, improved
rate of survival, and also at issues related to a better quality of life.
Manoj Pardeshi, General Secretary of NCPI+
Manoj stressed on the need to look into supply chain management issues so that no
stock-outs ever take place of medicines or other supplies such as diagnostic kits
among others. He appealed to Dr VK Subburaj, Secretary of DAC, to provide viral
load testing across the country and make it as an essential parameter to monitor
treatment and let CD4 count be the criteria to start the treatment only.
Dr BB Rewari, NACO
Dr Rewari assured NCPI+ that NACO is trying to expand availability of viral load
testing to monitor treatment. Currently NACO is doing 10,000 viral load tests every
year. If viral load testing is to be done six monthly to monitor ART, then it implies
that India should have the capacity to conduct more than 15 lakhs (1.5 million)
viral load tests annually to monitor the treatment of more than 768,000 PLHIV.
Daxa Patel, President, NCPI+
Daxa thanked NACO on behalf of the PLHIV community and also NCPI+. She said
that her CD4 count has increased considerably since she was on ART due to which
she is able to lead a normal life, taking care of her family responsibilities. She
recollected that earlier INR 25,000 was cost of treatment per month per person
and today ART is being provided free to over 768,000 PLHIV.
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Daxa underlined the responsibility of the PLHIV community in response to
government’s announcement to provide ART to those with CD4 count above 500.
She also stressed on the need to ensure quality-assured drugs without any stockouts, better adherence and treatment literacy among PLHIVs, and improving care
and support across the country.
She called upon the PLHIV community to shoulder their responsibilities well. Just
like they adhere to ART responsibly, they also need to be disciplined and be willing
to shoulder other responsibilities to improve India’s HIV response. We also have to
be honest, said Daxa.
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Session II:
Experience Sharing of key players in success story
Dr BB Rewari, NPO (ART), NACO
India is home to 6% of PLHIV in the world. Despite early projections by the western
media that India was slated to be AIDS capital of the world, such trends never
came true-- rather we have had a 57% reduction in new HIV infections and 35%
reduction in AIDS related deaths over the last decade.
Overall decline in HIV rates is seen in most at risk populations (MARPs) such as men
who have sex with men (MSM), female sex workers (FSWs), and injecting drug users
(IDUs). There is inadequate data on trends of HIV rates in other MARPs such as
truckers, migrants and transgender people.
There has been a drastic scale up of infrastructure during 2007-2013.
Corresponding figures for 2007 and 2013 indicate an increase in the number of: (i)
targeted interventions (TIs) among urban MARPs from 778 in 2007 to 1825; (ii) 30
link workers’ schemes for rural MARPs from 30 to 160 by; (iii) sexually transmitted
infections (STIs) clinics from 845 to 1136 clinics; (iv) districts covered by condom
social marketing programmes from 194 to 394 districts; (v) Integrated Counselling
and Testing Centres (ICTCs) from 4132 to 15538 ICTCs; and (vi) ART centres (and
link ART centres) from 127 to 1216 centres.
Service delivery has also got scaled up manifold over the past years. More than 1
crore (10 million) people are tested for HIV through ICTCs presently. Although 16
lakhs (1.6 million) were registered at some point in their life at ART centres,
768,000 are currently receiving ART. Comparing 2013 data with that of 2007 we
find an increase in: (i) Service coverage for MARPs from 30% to 80%; (ii) number of
MARPs and other vulnerable people covered from 3.2 lakhs to 31.5 lakhs—nearly
ten times more; (iii) number of STIs episodes treated from 21 lakhs to 60 lakhs STIs
episodes—nearly threefold increase; (iv) number of free condoms distributed from
11.1 crore to 41.1 crore condoms; (v) number of people who got tested for HIV
from 26.7 lakhs to 104.6 lakhs—fourfold increase; and (vi) number of PLHIV on ART
from 69,000 to 768,000—more than eleven times increase.
We need to scale up provision of secondline ART to all those who require it.
Presently 8500 PLHIV are receiving secondline ART. The cost of firstline ART is USD
100 per patient per year, and of secondline ART is USD 310 per patient per year.
We also need to scale up early infant diagnosis of HIV and provision of paediatric
ART across the country.
At the time India began the free ART programme, per capita health expenditure
was INR 35. Even HIV test was not affordable. Barring few exceptions, healthcare
providers were not willing to see the PLHIV patients. In 1998, being on ART meant
taking 30 tablets a day at a cost of INR 30,000 per month.
During 1999-2003, 1200 PLHIV had come to Ram Manohar Lohia (RML) Hospital
Delhi but only 70 could be provided ART. There were hardly any guidelines on HIV
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treatment and care then. Trained healthcare providers and counsellors were also
not available across the country but only at very few hospitals in major cities. The
WHO had organized the first consultation on guidelines for ART in January 2004
that informed India’s programme as well.
NACO began provision of long-term ART to eligible PLHIV in April 2004 onwards.
NACO also established systems to monitor and report treatment outcomes on a
quarterly basis. NACO had then set the target to attain individual drug adherence
rates of 95% or more. One indicator which was set then was to monitor increase in
life span so that 50% of PLHIV on ART are alive 3 years after starting ART. It was
also important to ensure that 50% of PLHIV on ART were engaged in their previous
employments.
NACO had then envisioned providing free ART to 100,000 PLHIV by 2007 and
188,000 PLHIV by 2010. ART roll-out started in April 2004 at 8 centres in 6 high
prevalence states and Delhi. 8 more centres were added by September 2004 and by
the end of that year the number of centres through which free ART was being
provided went up to 25.
Dr SY Qureshi, the then Director General of NACO, had emphasized on scaling up
the ART centres to 100 by end of 2006. ART alone was not enough; and care and
support thus became a priority in NACP-II. Major thrust to scale up ART came in
NACP-III when Ms Sujatha Rao was the Director General of NACO.
Despite over 100 ART centres, the number of PLHIV receiving free ART in the first
three years was less than 100,000. There were programmatic, technical and ‘viral’
challenges as well.
One of the programmatic challenges was the need for development of efficient and
sustainable delivery systems. The challenge included: public health infrastructure
in the country was not tuned to address challenges associated with HIV care;
monitoring and evaluation (M&E) concept in the general health system was nonexistent; and the public health system was already overburdened.
NACO took many steps to address these challenges such as: ART centres were set
up in hospitals within the Department of Medicine of Medical Colleges;
multidisciplinary ART teams were set up and trained; existing healthcare systems
were strengthened by additional technical, human, and infrastructure support;
additional laboratory investigations like CD4 count tests under NACP were
provided; systems for recording and reporting were setup; and a three tier model
of care, support and treatment (CST) services evolved.
Another programmatic challenge was need-based scale up of HIV related services
across the country. Challenges included: limited number of ART centres;
concentrated HIV epidemic in key populations (or MARPs); large country, poor
socio-economic status and diversity; and very different levels of health systems
from state to state.
NACO responded to this challenge of need-based scale up by: setting up ART
centres in a need based and evidence-based approach to increase access and
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maintain quality; detecting district-wise ICTC data for HIV sero-positives analyzed
and mapping catchment areas for setting up ART centres; setting up additional ART
centres in districts with higher number of PLHIVs; and upgrading link ART centres
into ART centres where number of PLHIVs was very high.
Another programmatic challenge was human resources to support HIV response in
India. Challenges included: non-availability of doctors (senior medical officers
(SMO) with MD) in desired numbers; retention of trained manpower at ART centres;
regularization of contractual staff; involvement of post-graduate students or
medical residents; and inclusion of HIV in medical curriculum.
NACO responded to these challenges by: including PG Diploma and HIV fellowship
as qualification for SMO; launching Diploma in HIV medicine in collaboration with
Indira Gandhi National Open University (IGNOU); starting capacity building
programmes; creating 500 regular posts of SMO/MO under NACP III; and trying to
involve medical faculty and post-graduate students but it needs push from Medical
Council of India.
Accessibility to care, support and treatment services was indeed a huge challenge.
Challenges included: half of those who were referred by ICTC to ART centres did
not reach there; and low utilization of ART services by MARPs.
NACO dealt with these challenges over the years by: rapidly scaling up ART
services with ICTC services; making ICTC triplicate referral system from ICTC to
ART; organizing ART-ICTC monthly meetings; establishing more ART centres in high
HIV prevalence districts to overcome geographic barriers; linking PLHIVs to link
ART centres; dispensing of drugs for 2 months; providing travel concession in trains
and State Transport buses; and strengthening linkages with TIs.
One of the most contentious programmatic issues over the years has been the
supply chain management of ART drugs. Challenges included: need for robust
system for procurement of drugs; uninterrupted supply chain of ART drugs; and
drug procurement for opportunistic infections (OIs).
NACO has been working to address these challenges by: establishing a centralized
procurement system; dedicating staff for supply chain management (logistics
coordinator); and decentralizing of supply chain management to State AIDS Control
Societies (SACS) after problems with centralized systems for drug logistics. Drug
procurement for OIs has been a challenge. Various models have been adopted for
drug procurement and supply chain management but none is applicable to all the
states.
Reduction in cost of ART has been a major contributor to accelerate India’s efforts
to roll-out treatment over the past decade. In 2000-2001, ART prices of patentholder companies came down from USD 10,439 to USD 712 whereas prices of
generic drugs during the same time came down from USD 2767 to USD 295. In 2006,
ART price per patient per year was INR 8200 which has come down to INR 5600 by
2013.
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Paediatric HIV care began in India in 2006 as part of the programme. There were
many challenges such as: children living with HIV had low access to HIV care,
confirmation of HIV was late in infants, and paediatric formulations were not
available at that time. So NACO responded and paediatric ART were made
available at all ART centres. The paediatric ART guidelines were developed and
paediatricians were trained as well. Pharmaceutical companies were given
guidance and the go-ahead to produce fixed dose combinations (FDCs) of ART for
children. Early infant diagnosis was introduced at ICTCs to screen every HIV
exposed child for HIV and confirm the diagnosis at ART centres at 18 months.
Another big challenge confronting NACO was lack of evidence and data to inform
the policy decision on questions such as: do Indian patients have low CD4 count? Do
they have low body weight and need lower dose of ART? Do they have more side
effects of ART due to malnutrition? Do they have different OIs?
So NACO identified few priority areas for operational research (OR) and studies
were commissioned to have insight into these country specific issues.
A range of OR studies were undertaken by NACO under NACP-III such as:
- Assessment of ART Centres in India: Clients’and providers’ perspectives: this OR
study led to the concept of Link ART centres (LAC)
- Baseline CD4 count of PLHIV enrolled for ART in India
- Assessment of CoE, RPC, CCC and Link ART Centres: this OR study led to the
revision of CCC concept
- Factors affecting enrolment of PLHIV in ART centres: this OR study led to the
expansion of LAC to LAC Plus
- Baseline CD4 count of healthy adult population
- Study of prevalence and types of baseline HIV drug resistance in the ART naive
and previously treated HIV infected Northern Indian population.
- Determination of reference ranges for CD4+T cell count and percentages for
Adult Indian Population.
- Determining factors associated with ART drug adherence among HIV positive
patients in India –A Multi centric Study
- Psychosocial needs and stresses in people infected with HIV/AIDS
HIV related stigma and discrimination in community and health care settings is a
recognized barrier to accessing existing services. It also affects treatment
adherence. NACO took a range of steps to mitigate HIV related stigma and
discrimination, such as: PLHIVs were appointed as care coordinators at ART
centres; outreach workers at Community Care Centres (CCC), and as coordinators
of Greater Involvement of People living with HIV/AIDS (GIPA) at State AIDS Control
Societies (SACS). Sensitizing healthcare providers and PLHIV networks further
helped mitigate stigma and discrimination. State Grievance Redressal Committee
(SGRC) has been established in all states to reduce stigma and discrimination
associated with HIV. Moreover HIV/AIDS bill which is in the Parliament presently
has a major thrust to stop HIV related stigma and discrimination.
At times PLHIVs were travelling large distances to access ART which led to loss of
wages and added travel cost burden for the poor. This also negatively impacted
ART drug adherence at times. “Assessment of ART Centres in India: Clients’and
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providers’ perspectives” OR study of 2007 led to the concept of Link ART centres
(LAC) which were low cost facilities where added expenditure was only on facility
development, training and operational costs. LAC functioned to trace PLHIV who
were lost to follow up (LFUs) or missed cases, screen HIV-TB co-infection, provide
ART to stable PLHIVs, provide adherence counselling and monitoring for side
effects and OIs for PLHIV on ART, treat minor OIs, provide psycho-social support to
PLHIV, help with pre-ART management (only at LAC Plus) among others. Now
PLHIVs do not have to come to ART centres except once in six months. Link ART
centres were first implemented in Gujarat and currently there are 850 LACs across
the country. NACO is planning to scale up the number of LACs to 1500 soon.
NACO also established a network of Centres of Excellence (CoE) for capacity
building of good quality, skilled and knowledgeable healthcare providers in chronic
patient management, including treatment failures. CoE also provided training to
HIV care personnel, conducted OR and worked upon scientific publications,
managed Fellowship Programmes for doctors, mentored other ART centres in the
region/state, provided distance education or consultation through telemedicine,
and served as a repository of information related to HIV/AIDS.
NACO also established 37 ART Plus Centres across the country. Many patients were
reportedly facing problems due to long distance, travel, time and costs in
accessing secondline ART. Through these ART Plus Centres, secondline treatment is
being rolled out to those PLHIV in need.
So, to provide an overview, NACO has established CoE and ART Plus Centres at
medical colleges, ART Centres at medical colleges and district hospitals, and Link
ART Centres and LAC Plus centres at community health centres and other subdistrict hospitals.
NACO is also working on innovative programmes such as SMART Card which will
help migrants or PLHIV who are travelling to access care from their nearest centre.
This SMART Card is yet to be launched.
TECHNICAL CHALLENGES
There are technical challenges NACO is confronted with such as irrational
prescriptions in private sector or use of secondline drugs for firstline ART. Quality
control in service provision at ART centres is another challenge. Monitoring and
supervision of services, training needs, etc continue to mount pressure on NACO.
NACO identified the following challenges related to quality of services at ART
centres: there was a need for standardization of services; maintaining quality of
services; and strategies to deal with late access to ART with low CD4 count.
NACO has developed Standardised Operational and Technical Guidelines which are
regularly updated and has constituted Technical Resource Groups on ART,
paediatric care, community care centres, laboratory services, among others. NACO
has also developed structured training programmes for all cadres involved with HIV
care, support and treatment. It has appointed a national consultant for ART quality
management. Regular sensitization of healthcare providers and engaging private
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practitioners in continuing medical education (CME) programmes is another priority
for NACO.
VIRAL CHALLENGES
Apart from programmatic and technical challenges, NACO was also confronted with
the challenges the virus was posing such as: long and short term ART drug
toxicities; ART drug resistance and treatment failure; introduction of newer ART
drugs over the years; prior exposure to nevirapine (NVP) for women and infants
exposed to NVP; drug resistance monitoring; HIV-2 related issues; pharmacovigilance; molecular or clinical research and drug trials.
State AIDS Clinical Expert Panel (SACEP) mechanism was set up by NACO to keep a
check on proper initiation of secondline ART. Almost 50% of PLHIVs who were
referred to SACEP actually did not require secondline ART.
NACO ART guidelines were regularly updated as newer evidences came forward.
CD4 count cut off for initiating ART was revised from 200 to 350 and now stands at
500. Similarly diagnostic algorithm for HIV-2 diagnosis was developed by NACO and
those with HIV-2 infection were provided Protease Inhibitor (PI) based regimens.
Viral load testing was not available routinely. Without viral load testing it was
difficult to confirm the immunologic failure. So NACO had adopted a targeted viral
load testing approach and is now considering making viral load tests available
across the country to monitor ART, diagnose immunologic failure early on and
improve programme outcomes.
Similarly Stavudine was phased out, based upon recommendations of Technical
Review Group (TRG) on ART as much data from India was not available, but
evidence from around the world was reviewed.
During NACP-I care and support was limited to ‘end care hospices’ where most
often PLHIVs were left by family members/ relatives due to high levels of HIV
related stigma and discrimination. Under the NACP-II, 122 Community Care Centres
(CCCs) were set up to provide treatment for minor OIs and psycho-social support
through sustained counselling. CCCs were intended to function as a bridge between
hospital and home care. Hence, CCCs were envisaged as stand-alone short-stay
homes for PLHIVs. These were not linked to other activities of the programme.
During NACP-III introduction of ART brought about a change in the role of CCCs as
they were now transformed from stand-alone short-stay homes to centres which
are playing a critical role in enabling PLHIVs to access ART as well as providing
monitoring, follow-up, counselling support for: those who are initiated on ART,
positive prevention, drug adherence, nutrition counselling etc.
From 1st April 2013 Care and Support Centres (CSCs) have been started. CSCs serve
as focal points for providing care and support services, counselling, peer education
and a comforting environment to PLHIVs. The overall goal of CSC is to improve the
survival and quality of life of PLHIVs.
Reflecting back, Dr Rewari said that one of the key lessons of NACO’s experience
of rolling out ART over the decade is that even vertical programmes can widen the
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horizon and integration with health system is possible--for example, PPTCT,
FICTCC, STIs programme, among others. All investigations done for PLHIVs on ART,
other than CD4 count, are through the general health system.
HIV-TB collaborative activities present a model of linkages between two large
programmes and with National Rural Health Mission (NRHM).
NACP has shown to the system that either assistance can be sought from another
programme or an arm extended to help or link with other departments like ICDS,
women and child development, youth ministry, information and broadcasting,
insurance, among others.
Dr Rewari was concerned that were we slipping back to the pre-1996 HIV era, as
the cost of third line ART is about the same as that of firstline ART back then.
Discussion
Vikas Ahuja of Delhi Network of PLHIV (DNP+): Stock outs have happened over the
last few years of nearly every ART drug at some point or the other. Reasons varied
such as tender problems; delays in signing of contracts by donors like the Global
Fund to fight AIDS, Tuberculosis and Malaria; lack of bids, etc. But this adversely
affects PLHIVs across the board. PLHIVs are adhering to the treatment, but with
drug stock-outs they are likely to face the brunt of interrupted treatment, despite
adherence. Also many PLHIVs have to travel long distances to access medicines.
Dr JVR Prasada Rao, United Nations Secretary-General’s Special Envoy
for AIDS in the Asia-Pacific region and former Director General of NACO
India has been a great success story as we are seeing a decline in new HIV
infections. India might be one of the few countries in the world to achieve MDG-6.
Apart from 10 years of rolling out ART we have also passed another landmark-- 20
years of NACO. I do not think any national programme has been able to achieve so
much.
Supply chain management in such a large programme and diverse country like ours
is always a problem. So unless we address it, many of the gains we have made will
be at risk of being lost.
United Nations General Assembly Special Session (UNGASS) on HIV/AIDS in 2001 was
a game changer where Ms Sonia Gandhi had represented India. It was at UNGASS
that the decision and political mandate to create the Global Fund to fight AIDS,
Tuberculosis and Malaria (The Global Fund) was put forth. Also President’s
Emergency Plan for AIDS Relief (PEPFAR) came into existence soon after.
India’s then Health and Family Welfare Minister Ms Sushma Swaraj had announced
on World AIDS Day 1st December 2003 that free ART will be provided to one lakh
PLHIVs (100,000). This was another milestone because political leadership was
there with NACO right up-front.
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We should also acknowledge the contribution of Indian pharmaceutical companies
as they too were game changers. If ART prices had not come down in 2001, the
world would not have been able to put 15 million PLHIVs on treatment.
We need to stand united. We need AIDS activism and keep the pressure on. We are
passing through a difficult time, as 2015 post development agenda is evolving.
There is concern as to how much importance AIDS will get in post 2015 agenda. So
unless countries move forward it is not going to happen. New Strategic
Development Goals (SDGs) for post-2015 will be set by the countries. Countries like
India are going to play a very important role.
Ms Shailaja Chandra, former Director General of NACO
We have been able to bring down the number of HIV transmissions through blood,
new HIV infections and AIDS related deaths. It was way back in 1991 when Tamil
Nadu and Maharashtra were the states which were selected to come up with
strategies on HIV, due to which I faced a lot of opposition from the media and the
government. Later on, the first project director of NACO, Dr PR Dasgupta, came
from Maharashtra.
Doctors have also played a crucial role over the years. Dr BB Rewari, has been
lucky himself to stay in the same department looking after ART roll-out in the
country over the years. He has enormous institutional memory of the programme
and prevents it from being derailed.
The greatest success of the programme is that it has been able to come out of
backwaters to get political support from politicians who were able to talk about
AIDS and key populations, among others. We have come such a long way since then
when a Minister had said that ‘HIV is not a problem for our country’.
Ms Meenakshi Dutta Ghosh, former Director General of NACO
We applaud the NACO for the tremendous progress made in the fight against AIDS
in India. It is noteworthy to commend outstanding community-led processes such
as those in ‘Sonagachi’. Side by side I have also seen HIV related stigma, silence,
shame and, at times, utter hopelessness of PLHIVs. Since cost of the treatment
was prohibitively higher, any discourse on this subject was an elephant in the
room. But NACO was alert. When CIPLA succeeded in producing generic medicines
at lower cost and commenced rapid up-scaling of ART drugs, NACO seized this
opportunity. NACO had then invited Clinton Foundation to install CD4 machines in
high HIV prevalence districts. Then WHO stepped in with 12 months of assured
supplies of ART medicines to support initiation of India’s roll-out of ART. Also
NACO had won 3 competitive bids from the Global Fund, which positively impacted
the roll-out of ART.
First grant from the Global Fund was awarded to support PPTCT, second grant from
the Global Fund went to support HIV-TB collaborative activities to respond to HIVTB co-infection, and the third grant from the Global Fund went to support ART
roll-out over years after WHO’s support discontinued after a year.
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When India began roll-out of ART, one major challenge was that not enough people
were coming forward to get tested and, if eligible, begin ART. So a lot of effort
went in that direction as well to scale up testing and roll out of treatment as well.
Before ART roll-out, government hospitals were providing treatment to PLHIVs for
other diseases, so introduction of ART certainly bridged the gap in the programme.
Earlier people were questioning ‘what is the point of testing for HIV when there is
no treatment?’
Clinics for sexually transmitted infections (STIs) came up in a big way in high
prevalence states with support from the Bill and Melinda Gates Foundation, which
was another positive boost to the HIV programme in the country.
Another major step in the right direction was on HIV sentinel surveillance. Since
1998 we were getting the data from two sites across the country--antenatal and
STIs clinics. But 2002 onwards we expanded the HIV sentinel surveillance
tremendously so that the estimates became more realistic.
Dr SY Qureshi, former Director General of NACO also needs a special mention for
not only initiating the ‘Red Ribbon Express’ but also holding his ground on IPC
Article 377 when pressured by the Home Ministry.
Dr SY Qureshi, former Director General of NACO
Looking back I feel that engaging the Ministry of Youth Affairs in HIV/AIDS was one
of the important steps. Ministry of Youth Affairs had launched HIV programme in
1991 much before NACO came into existence. In its early days NACO had even
borrowed IEC material on HIV/AIDS from Youth Affairs Ministry.
Two things have changed: firstly, scale has changed as problem was much bigger
back then, and secondly, in those days the debate was between treatment or
prevention, but I always prioritised both, as we had to prevent HIV transmission as
well as treat. (Now we have treatment as prevention too).
Red Ribbon Express was another hallmark because it helped in making the HIV
programme visible across the country. Clinton Foundation was then willing to come
forward and help support NACO but at that time government’s announcement
came to not take any foreign fund except those of USAID and DFID. Later Clinton
Foundation provided training to private doctors in HIV management, as till then it
was mostly the government doctors who had experience of managing HIV.
I went to the Home Ministry and made a presentation to then Home Minister on
Article 377. Article 377 criminalizes same sex behaviour and thus drives
populations underground making it difficult for HIV prevention, treatment, care
and support services to reach those in need. The same holds true for laws
criminalizing sex work and drug use. At least the police had been cooperative then
and did not raid sex work or drug use projects.
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Dr JVR Prasada Rao had introduced Dr BB Rewari to NACO and that was indeed a
turning point as Dr Rewari has led the ART roll-out so ably over the past years.
Ms Sujatha Rao, former Director General, NACO
Looking back I feel that engaging the Ministry of Youth Affairs was one of the
important steps at NACO. Ministry of Youth Affairs had launched HIV programme in
1991 much before NACO came into existence. In its early days NACO had even
borrowed IEC material on HIV/AIDS from Youth Affairs Ministry.
Two things have changed: firstly, scale has changed as problem was much bigger
back then, and secondly, in those days the debate was between treatment or
prevention, but I always prioritised both, as we had to prevent HIV transmission as
well as treat. (Now we have treatment as prevention too).
Red Ribbon Express was another hallmark because it helped in making the HIV
programme visible across the country. Clinton Foundation was then willing to come
forward and help support NACO but at that time government’s announcement
came to not take any foreign fund except those of USAID and DFID. Later Clinton
Foundation provided training to private doctors in HIV management, as till then it
was mostly the government doctors who had experience of managing HIV.
I went to the Home Ministry and made a presentation to then Home Minister on
Article 377. Article 377 criminalizes same sex behaviour and thus drives
populations underground making it difficult for HIV prevention, treatment, care
and support services to reach those in need. The same holds true for laws
criminalizing sex work and drug use. At least the police had been cooperative then
and did not raid sex work or drug use projects.
Dr JVR Prasada Rao had introduced Dr BB Rewari to NACO and that was indeed a
turning point as Dr Rewari has led the ART roll-out so ably over the past years.
Mr Chandramouli, former Director General of NACO
We need to bring PLHIV earlier into the programme. The lowest CD4 count I had
seen was of a PLHIV in Pune with CD4 count of 2. Drug stock-outs are shocking and
we wish that stock outs never happen. I am sure in the coming days we will not let
go the advantages we got under this programme.
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Session III
Voices of the communities…
Ms Anandi Yuvaraj
The PLHIV movement in India started taking shape in the late 1990s. Each PLHIV
story is about living, hope, courage, being positive, creating change in the people
we listen…
Late Ashok Pillai, one of the PLHIV leaders, needs a very special mention. 12
PLHIVs came together in 1997 to take the movement further. Ashok carved a niche
for the network in the national AIDS programme. He remains an inspiration to
many of us.
Numbers of PLHIV in the network grew and we were not alone in the epidemic.
There were many other people infected whom we did not know personally but
networks gave a platform for coming together. When we are together we have the
courage to show our face. Whatever burden or problem we can face it together.
PLHIV leaders like Peshia Lam stood tall against all odds. Visionaries like Banta
Singh laid the strong foundation of PLHIV network in the north east of India.
Initially it was difficult to be open about one’s HIV status as most of us were very
scared. We could only talk about our HIV status only to a doctor because we
thought having HIV was only about sickness and death. However with time and
scale up of HIV services scenario changed for the positive.
We concentrated on forming and strengthening state level PLHIV networks. Women
living with HIV from different parts of the country joined hands and participated.
As there was no ART back then, we focussed on positive living, nutritious food, and
other ways to take care of oneself. Laughter and fun were always a part of our
meetings. Networks provided a safe space for sharing, caring and learning from
one another.
Noori, a HIV positive transgender person in Chennai, has been taking care of more
than 50 children living with HIV. Ramu Pandian and KK Abraham took leadership at
Indian Network of PLHIV (INP+). DNP+ was leading on treatment activism, patents
and other issues. Formation of Parliamentary Forum on HIV was another big lead
ahead.
Dr Alka Deshpande
Back in 1986 when first HIV case was diagnosed in India, there was lot of denial.
Very few private laboratories in Mumbai and other cities came forward and some
private and public sector physicians and other healthcare providers to help PLHIVs.
The moment a patient was detected HIV positive he/ she was referred to JJ
Hospital as JJ Hospital being a government hospital, could not have refused
admission.
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So I started HIV daily care programme for the first time in the country. In 1992
NACO activities began and first meeting was to discuss the issue of death
certificates. Since AIDS was written burial of PLHIVs was a problem and we had to
formulate a guideline on how to issue a death certificate.
In 1993-94, our dedicated OPD to PLHIV started at JJ Hospital. Training programme
to manage HIV was going on since 1990 onwards. There were training needs back
then too for example unless people working in laboratories are trained samples
might get refused.
Rest of the world had predicted ART is not for India and mainstay for India was HIV
awareness programme back then. This was very frustrating for me, because when
medicines are available then we should be able to access it. Treatment is not just
for rich nations or people. At that time NACO had given medicines for OIs only.
Treating OIs was like treating amputations without treating diabetes. So we really
needed ART which came later in 2004 onwards. Later when ART roll-out began, I
had 12,000 PLHIVs at our ART centre.
In 2006 a German journalist was surprised to see that Indian generic drugs work. So
there were lot of misconceptions about generic medicines vs patented branded
drugs.
Managing HIV has given me insight to manage other diseases and disorders.
We have moved from the point in time when world told us ART was not for India to
what Dr Rewari told us now that over 768,000 PLHIVs are on ART in 2014. Over 89%
of global ART supply is provided by Indian generic companies.
Ms P Koushalya
Twenty women living with HIV went to Tambaram Hospital, and met Dr Devarajan.
Dr Rajshekharan also came forward to help. At that time there was no CD4 and
viral load testing. Doctors said that ‘Om Shakti’ pharmacy will give us a discount
price as cost of one medication of Ziduvudine was INR 4500. I was supported by a
citizen’s run charity to have access to medicines. I was admitted in a hospital due
to TB meningitis. I started my medication when CD4 count was 24. Dr Purnima and
Dr Kumarasamy helped me get back to work.
Dr Rajasekharan
In 1997 I started treating PLHIVs. Tambaram Hospital was giving ART then. I have
learnt so much from PLHIVs and owe them so much too.
ART also made physicians like me more concerned for patients. Treatment became
care and support! Prescription was as per the treatment protocol and advice we
give became counselling. ART has given an entirely different dimension to the
entire medical world.
Mr Naresh Yadav, President, UPNP+
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It has been a long journey from 2 ART centres a decade back to more than 1200
centres providing care, support and treatment to over 768,000 PLHIVs. Since then
over 25 drugss of ART have come. It has been a huge learning process.
Drug stock-outs sadly continue to be a point of frustration today. Drug stock-outs
were also a big challenge in 2011 too which led PLHIV networks to stage a
demonstration at NACO. Not only NACO had resolved the drug stock-out in 2011
but communities too could learn about the detailed processes that went behind
the supply chain management. It changed the way we saw the government and
system and made us realize that we have to work together for better programme
outcomes.
PPTCT helped PLHIVs live a normal life with complete families without exposing
the child to HIV infection. It also became possible for HIV sero-discordant couples
to have a child.
Hepatitis C Virus (HCV) is a big challenge confronting PLHIVs who are co-infected
with HCV too. We have to address HCV programmatically as well.
Dr R Gangakhedkar, National AIDS Research Institute (NARI)
In Mumbai there were four physicians who were willing to see HIV patients: Dr
Saple, Dr Gilada, Dr Maniar, and me. In 1992, Dominic D’souza, a PLHIV, developed
Pneumo-Cystis Pneumonia (PCP). We airlifted him from Goa thinking that we will
resolve this issue.
Dominic was a very charismatic PLHIV. He was admitted to Beach Candy Hospital –
but no staff was willing to see HIV positive patients. So we had to bring all
healthcare providers from outside to take care of Dominic. We could not save him
and it was difficult to find even 4 people to take him to the crematorium. Dominic
wanted his will to be published in newspapers. No newspapers at that juncture was
willing to publish this will. We strongly felt that those who were dying had to be
saved. Soon later I moved to NARI in Pune.
In 1999 CIPLA came out with ART price reduction offer. I wrote back to Dr Jaideep
Gogte of CIPLA back then that it may lead to irrational use of drugs. I said we
should train high volume purchasers. Dr Pujari, Dr Kumarasamy, Dr Atul Patel and I
came forward to train all of them.
PPTCT was a visionary move for NACO. Few minutes of discussion on PPTCT with Dr
JVR Prasada Rao mobilized experts such as Dr PL Joshi who came to NARI and
finished the protocol to roll out this programme.
Sustaining a programme is a task for Dr Rewari. Drug stock-outs should not happen.
This is the first experience for Government of India to provide drugs for lifelong to
a considerably large number of PLHIVs, which is not an easy task by any means.
A lot has changed since first person was diagnosed with HIV in 1986 in the country.
For instance, national programme for sexually transmitted infections (STIs) became
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stronger than it was 27 years back. AIDS denialism and silence around sexuality
were a big barrier in 1980s severely paralyzing work on HIV. Blood safety
programme was in its infancy and health infrastructure was not being used for
responding to behaviourally transmitted infections back then. After 27 years since
first person with HIV got diagnosed in India, there is a considerable positive change
on the above stumbling blocks.
Mobilizing HIV key affected populations and recognizing their community
competence by engaging them as experts in policy making has made a defining
contribution to HIV response over the years.
According to latest data overall HIV rates have declined but not in key affected
populations such as transgender people, long-distance truck drivers, among others.
HIV rates in all key affected populations continue to remain manifold than in
general population. International and domestic funding, and technical support
have upped to support HIV response in India which has directly impacted the
demand generation for services and service provision as well.
India had responded to HIV early on. ICMR had started HIV surveillance with first
cluster of cases getting identified in 1986. National AIDS Policy was formulated by
1987 which has been surely a work in progress since then. National AIDS Control
Programme (NACP) was launched in 1992, six years after the diagnosis of first HIV
case in the country. India had recognized the key affected populations and
responded in form of targeted interventions (TIs) in 1990s.
Globally transmission of HIV via blood transfusion got attention in 1985 and by
1989, India came up with policy recommendations regarding professional blood
donors that all blood units must be tested for HIV. Likewise HIV subtype-2 was
identified in India in 1991 and HIV test kits had included HIV- subtype-2 testing by
the end of the same year. The first-ever PPTCT began in 1994 globally and by
1999, India was beginning to roll it out. Similarly ART were developed in 1997 and
its provision in India as part of the programme began since 2004.
We have been successful thus far but there are threats that need to be
understood. Service coverage of ‘visible’ sex workers is 85% but a range of factors
are driving sex work and making it ‘invisible’ which certainly affects reach of
services. Mobility also adversely impacts service coverage. Lower numbers of sex
workers living with HIV are accessing ART and retention rates are also worrisome.
More community-led interventions are needed to enhance programme impact for
sex workers.
Currently HIV service coverage for men who have sex with men (MSM) is about twothird but more than half of MSM tend to get married under societal pressure which
make it difficult for services to reach out to them (and their partners). Poor
knowledge about anal STIs in MSM and healthcare providers, and lower access to
care are other key impediments.
Although estimates of transgender populations are smaller but HIV rates are among
the highest. Extremely low levels of service coverage for transgender people and
high mobility are other challenges.
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Two major causes of death among injecting drug users (IDUs) are drug overdose
and hepatitis C Virus (also referred as Hep C or HCV). There is no free treatment
provision for HCV, which threatens to lose gains made by ART provision in IDU
living with HIV. Continued high prevalence of HCV merits reconsideration as we
have not been able to influence the cohorts of new IDUs.
Another HIV key affected population with alarming HIV rates is of single male
member migrants. According to NACO 2012 data, HIV rate among single male
member migrants in Odisha was 3.2%,1.6% in West Bengal, 1.3% in Haryana, 1.2% in
Mizoram, 1.2% in Punjab, and 1.1% in Maharashtra. Most of these states have
otherwise low HIV prevalence so often HIV in these key populations goes less
noticed. Challenges continue to be a roadblock for single male member migrants
who are in-need of HIV services. Lot more work needs to be done to address issues
such as mobility, engaging employers towards welfare of single male member
migrants, among others.
Coverage of TB-HIV collaborative activities has shot up over the past years from
‘both sides’ (TB and HIV programmes) in India. But a lot more needs to be done.
The Revised National TB Control Programme (RNTCP) should at least think of using
daily treatment regimen for HIV co-infected people. 5.2% of samples tested for HIV
among those referred by RNTCP were positive for HIV.
Quality counselling and adherence issues need much more attention than currently
given. With NACO gearing to raise the ‘cut-off’ CD4 count to 500 for ART
eligibility, counselling and adherence related areas will become more definitive.
More than 120,000 additional PLHIV are estimated to be eligible for ART as CD4
'cut-off' moves up to 500. Median CD4 count at which people living with HIV
(PLHIV) present themselves to receive ART is about 200 in India now. So lot more
needs to be done to bring PLHIV to the fold of services early on. PLHIV need to be
counselled very well that why starting ART earlier when they otherwise feel
healthy and fine is better for their long-term health. Obsession of healthcare
providers with newer drugs should not diminish critically important comprehensive
quality-counselling and adherence related issues.
Vijay Nair
Geeta Venugopal needs a special mention as she has helped build leadership in
PLHIV community.
I was first MSM living with HIV since 19 years without ART. But health deteriorated
after 19 years and doctor said that I have to be on ART. Dr Gangakhedkar treated
me who is one of the very few sensitive HIV physicians in the country.
Drug stock-out issue is a major stumbling block and has been coming up every now
and then. This needs to be addressed in order to prevent any further drug stockouts in future. Adherence will improve if we can get ART drugs for longer duration.
KK Abraham, INP+
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When ART treatment started in India in 2005, it was indeed a great step ahead for
PLHIVs. If someone owns PLHIV movement then it will seize to be a movement. So
it is good that many PLHIVs are coming forward and taking responsibility. It is a
good sign for PLHIV movement in the country. We may have won this battle but we
have not yet won the war.
Gauramma, Ashodaya
We work with women and transgender sex workers. We had to go to take
medicines and stand in queues for long duration and often came back without
medicines due to sex work related stigma. When we raised this issue with then
Director General of NACO this issue was promptly addressed. After that every sex
worker in need got a reference slip and was able to access ART.
I had to wait for 11 years to get ART. My CD4 went down but I was not able to get
ART.
Umesh Sharma, Injecting Drug Users Forum (IDUF)
I am a PLHIV and also have been an injecting drug user. In 2010 I came back from
Thailand and wanted to access ART from the government. I am not satisfied with
the functioning of SACEP. 50% of people who were referred to SACEP did not
qualify for secondline ART but I want to say that there are many more PLHIV who
were just waiting for SACEP and died in the meantime. I think SACEP is a hurdle to
accessing treatment.
In spite of the glory of what we have done in the past, viral load testing is hardly
available in 9-10 places. Viral load testing is not available for everyone on ART. We
need to address this urgently so that viral load testing can be routinely used to
monitor treatment.
We also need to urgently address drug stock-outs. We have to improve HIV testing –
unless we improve testing how will we reach out to those undiagnosed PLHIV?
There are issues such as many IDU are living on the street and no place to securely
keep ART. So we need to find solutions in unique context of community too.
Dr BB Rewari’s response:
It is right that there were PLHIVs who died while waiting for SACEP. People do not
die due to non-availability of secondline treatment but due to OIs. As we continue
building the capacity of the system we may not need SACEP. We have to remember
that thirdline treatment is there but nothing much beyond that.
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Panel discussion
Panelists: Dr Ashok Kumar, Deputy Director General. Dept of AIDS Control; Anand
Grover, UN Special Rapporteur on Right to Health; Dr AS Rathore, DDG NACO (CST);
Mr Sudhakar from CDC; Mr K Pradeep; Dr Kumarasamy; Mr Taufiq; Leena
Menghaney, MSF Access Campaign; DNP+ representative; Umesh Sharma, IDUF;
Shiba P, APN+
Mr Sudhakar: Universal Health Coverage (UHC) is when all people are able to use
needed health services (including prevention, promotion, treatment, rehabilitation
and palliation) of sufficient quality to be effective; the use of these services does
not expose the user to financial hardship.
We all know that lot of women get pregnant but not all of them get tested for HIV.
Of those who get tested for HIV some of them come to ART centres. Some of them
are seen as eligible and not all of them get the prophylaxis. Not all infants who are
HIV positive are put on prophylaxis.
UHC provides an equity perspective that every woman is tested and retained in
care. For me UHC and PPTCT go hand in hand: UHC and zero new HIV infection go
hand in hand too.
Dr Ashok Kumar: Every new born baby should stay away from HIV and non-HIV
STIs. DAC has a national policy that each and every pregnant women to be
examined for HIV and STIs both, detect HIV and STIs early and initiate the
treatment. Policy guidelines also say that any HIV positive pregnant woman should
be put on ART irrespective of CD4 count.
Mr Taufiq: Indirect costs also add up for the person and may become a barrier
even if the drugs or services are free. Either we can pay for transport or go for
innovative mechanisms. Innovative ways lie in the community to address this issue
in their own context. For example finding new ways of service delivery which can
minimize or take care of the indirect costs might work in certain contexts.
Dr Rathore: Himachal Pradesh government has taken permission from transport
department so that the PLHIV gets to travel free to ART centres. PLHIVs are given
a free pass. There are 13 states that are using different models to deflate indirect
costs.
Dr Kumarasamy: We have to invest in indirect costs so that programme benefits
reach the people in need. We had shown five years back that TDF is more cost
effective as it avoids so much of hospitalization related costs.
Anand Grover: Though triple combination therapy was available since 1996-97, it
was only in 2004 we started rolling out ART.
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States have not used TRIPS flexibilities to increase access to essential and
affordable medicines. So what prevents us from using all the flexibilities that are
available under the TRIPS? Some countries have started to change their laws, but
we need to use all the flexibilities available such as filing pre-/post-grant patent
oppositions, counter pleas etc.
Promotion of domestic drug production and pooled procurement are key to
unlocking more equitable access to essential and affordable medicines.
Asia-Pacific countries, especially the larger countries, should pool their resources
and try to procure commonly used generic ART drugs from a common source. This
common source can be any country that can provide these drugs, so that they have
a market with a large access. That will facilitate Asia-Pacific regional companies to
come up. India can do it for some time but we need other companies also, in other
countries. For example, countries like India, China and Thailand should do drug
procurement together. Then they will actually be able to have a large market, and
essential drugs can be purchased cheaply.
When essential drugs are not made available in large quantities or at affordable
prices by multinational companies then governments should issue a compulsory
license.
Drugs for treating hepatitis C – such as the pegylated interferons – are not readily
available at affordable prices. We need to use compulsory licensing, or pre-/postgrant opposition procedures to block patents being granted, and allow flexibilities
to be used optimally. Any pressure against using flexibilities must be resisted.
Compulsory licensing should be made available, without any pressure from the
developed countries.
Another major issue is the criminalization of key populations affected by HIV. We
need to think of decriminalization of same-sex relations, possession and/or
consumption of drugs, as well as sex work.
There are certain measures that can be taken immediately without changing the
law, such as harm reduction measures. We also need to push for changing the laws
at a suitable level. Even if we do not decriminalize, for the sake of health the law
will allow delivery of services to key populations. All health services should be
availed without any interference from the government and we need to empower
the communities so that they can fight for it.
In India the question we need to ask is have we invested enough in primary
healthcare? Tertiary healthcare sector is actually getting the investment, not
primary healthcare. 3% budget for healthcare is abysmal.
K Pradeep: we surveyed 29 generic companies but only 4 continue to produce
generic. We need to make sure that the government can support generic
manufacturing in India. Other countries say that India is keeping them healthy
today.
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DNP+ representative: we are talking about zero new HIV infection, death etc –
good to hear this. But reality is that we are not supporting our generic companies.
We have to relook at this.
Shibha, APN+: I have been living with HIV since 1992. In 1996 a friend of mine
went to international HIV conference in Geneva. When he came back home he
brought back AZT. We rushed to his house to see his medicines. They were simply
tablets but it is important to see how we felt. I have been taking ART since last 14
years. Why are we making people running around every month? We need to deliver
ARTs to community based organizations – and do CD4 or viral load testing or other
tests to check liver etc every six months. But why should we make PLHIVs go to
the hospital just to pick up ART?
Leena Menghaney, MSF: First issue is that we are yet to have fixed dose
combinations (FDCs). In South Africa Treatment Action Campaign had started to
challenge the patent system. South Africa was a trigger point in Africa for
increasing access to essential medicines. India was a trigger point for battle for
treatment in Asia.
We still have to infringe patents to treat patients. It is very important for us to
ensure that we are not hit by patent laws and forced to stop providing treatment.
This is likely to happen as patent regime in India deepens.
We are one of the first treatment based HIV programme, and in Hepatitis we can
do this as well. Where treatment becomes prevention in not just HIV but hepatitis
as well. NACO should have this dialogue with MoHFW.
We should not just limit our thinking to HIV medicines, but also think about coinfections such as TB, drug-resistant TB, viral hepatitis, HCV, etc.
Vote of Thanks
Dr. BB Riwari has given vote of thanks to all participants who came to attend the
treatment @ 10 meeting, he has also acknowledge that with the active and
constructive participation of the PLHIV community the ten year of ART journey
would net be able to achieve. He is also give vote of thanks to all development
partners to provide support to implement the programme.
He is given thanks to all PLHIV group and NCPI+ to work hard for this successful
event and also acknowledge the Department of AIDS team who have work
throughout the month on this event.
Mr. Manoj Pardeshi give thanks on behalf of the community, he gave vote of thanks
to current and Ex head of NACO who has always show their solidarity for
community. He also thanks to NACO team and their support for this event which
make a unprecedented event in the history of NACO, he has also ensure that as the
community we will ensure to work to increase the uptake of ART enrolment and
we will play a vital role in HIV/AIDS response.
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He also gave vote of thanks to various civil society organisation and development
partner who have support the community in last one decade and for this event. He
emphases that the commitment to AIDS response the have received from them is
remarkable and the prevalence rate of HIV is decline in recent past. We would
require same commitment to fight with HIV.
He is also acknowledge the work have been done for this event by state & districts
level positive network as a unit is outstanding this strength is give us courage to do
more work for community.
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Journey of 10 years of ART in India- Story of a Decade
The Lalit, New Delhi,7th April,2014
Time
09.00-09:30am
09.30 - 11.00 am
11.00-11.15am
11.15 am – 12.45
pm
12.45- 1.00 pm
1.00- 02.00 pm
02.00-02.30 pm
02.30 - 03.15 pm
3.15 pm-3.30 pm
Activity
Presenter
Registration
Inaugural Function
Ganesh Vandana
Dr. V. K. Subburaj, Secretary (DAC)
Dr. A. S. Rathore, DDG(CST) DAC
Dr. Jagdish Prasad, DGHS
Dr. Nata Menabde WR, India
All Dignitaries
Dr. B.B Rewari
Ms. Daxa Patel
Welcome Address
Overview of the event
Address
Special Remarks
Lighting of Lamp
Journey of a Decade of ART
Community Perspectives
Release of Monograph10 Years of ART
Secretary DAC with All Dignitaries
Group Photograph followed by Tea break
Experience sharing by Key Players in Success Story
Felicitation by DAC with Communities
Mr. J.V.R Prasada Rao
Felicitation & Address
Smt. Shailaja Chandra
Felicitation & Address
Smt. Meenakshi Dutta Ghosh
Felicitation & Address
Felicitation & Address
Dr. S.Y. Quraishi
Felicitation & Address
Ms. Sujatha Rao
Felicitation & Address
Mr. K. Chandramouli
Felicitation & Address
Mr. Sayan Chatterjee
A Short Dance Performance
LUNCH
Acknowledgement by Communities
DAC, UNDP,UNAIDS, USAID,
Voices from across the country
Remembering Key Activists
Ms. Anandi Yuvraj
My Reflections
Dr. Alaka Deshpande
Community Voices
Ms. R kaushalya
My Memories
Dr. S. Rajasekaran
Community Voices
Mr. Naresh Yadav
A look into the past
Dr. Gangakhedkar
Community Voices
Mr. Vijay Nair
A Short cultural programme
Way forward to ensure smooth and uninterrupted access to treatment
10 mins
7 mins
6 mins
6 mins
20 mins
8 mins
5 mins
15 Mins
5 mins
5 mins
5 mins
5 mins
5 mins
5 mins
5 mins
10 mins
10 mins
5 mins
5 mins
5 mins
5 mins
5 mins
5 mins
15 mins
Panel Discussion: Implications of Universal health care agenda on HIV CST services
Chaired by Dr. S Reuben, WHO & Co-Chaired by Dr. A. S. Rathore, UNAIDS, World
Bank, NCPI and DAC officials
03.30 – 05.00 pm
05.00 - 5.30 pm
5.30 pm
onwards
45 mins
Panel Discussion: Strategies to overcome issues related to patent, TRIPS, Trade agreements
Chaired by Mr Ananad Grover & Co-chaired by Mr. K. Pradeep , participants-LC,
MSF, ITPC, APN+, NCPI, Generic PharmaWorking towards 10X15All six networks
Commitment Towards Treatment preparedness, adherence and positive prevention
Response by Development Partners- UNDP, UNAIDS, USAID, UNICEF, ILO, CDC
Acknowledgeing state partners with High Tea
Vote of Thanks- Mr. K B Agarwal, JS, NACO
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30 mins
10 mins
30 mins
Pledge taken by representatives of various PLHIV networks in India
 We commit to work towards a collective and collaborative effort
to have 10 lakh PLHIV on ART by the end of 2015
 We pledge to uphold a shared responsibility to the health and
wellbeing of every PLHIV in India
 We commit to maintain 100% treatment adherence
 We pledge to promote positive prevention
 We believe “10 by 15” is possible. We will make it happen
 Join us in this commitment
 We will work together as equal partners in this effort
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