Marking a decade of free antiretroviral treatment (ART) in India

1_T@10More than 300 stakeholders from government, affected communities, media, international agencies, and civil society came together today to mark the completion of 10 years of free antiretroviral treatment (ART) in India. The event – Treatment@10 – was organised by the National Coalition of People Living with HIV in India (NCPI+), in collaboration with the Department of AIDS Control, India HIV/AIDS Alliance, PHFI, UNAIDS, USAID and UNDP, to celebrate the ten-year journey that has transformed the lives of people living with HIV (PLHIV) and their families.

The first HIV case in India was detected in 1986. An estimated 2.1 million Indians are now living with the virus. The first effective ART regimens were announced in 1996. Even as the medicines became available in India, they remained unaffordable to most people who needed them. People sold their property and assets to buy the drugs, but few could afford life-long treatment. Mona Balani a woman living with HIV recalls, “Back in 2002, we were either thrown out or denied treatment at government and private hospitals, and we got no support from our families.”

On 1 April 2004, in response to years of advocacy by PLHIV leaders like Ashok Pillai and Rajeshwari, the Government of India began a free ART programme at eight centres in six high-prevalence states that has now grown to a network of 1,251 ART and Link ART centres across India. Today, free ART is accessed by over 768,000 PLHIV at these centres.

Kanjibhai B Gadhia, a farmer from Amreli district of Gujarat who has been on ART for the past 10 years says, “ARV is my partner for life and I can never give it up.” His story resonates with the almost eight lakh PLHIV on treatment in India. This 10-year milestone has been made possible by the joint efforts of India’s committed PLHIV community, the Department of AIDS Control, bilateral & multilateral donors, and many civil society stakeholders at every level.

While reflecting on progress, the Treatment@10 conference also deliberated on the urgent need to define a clear roadmap to ensure further necessary scale-up of treatment, care & support services for PLHIV in India based on the model of partnership that has defined India’s ambitious and innovative model.

Manoj Pardesi, General Secretary, NCPI+, reminded participants, “While the past decade has seen commendable strides in accessibility to AIDS treatment in India, there is still a long way to go. Many people living with the virus are yet to be enrolled in HIV care. PLHIV need routine and uninterrupted access to CD4 testing to ensure timely initiation of ART and regular monitoring. There is an urgent need to scale up viral load testing, enhance accessibility to second- and third-line treatment regimens, and increase availability of pediatric formulations. We’re committed working with the Department of AIDS Control and other stakeholders to put 10 lakhs PLHIV on treatment by the end of 2015.”

Sonal Mehta, Director of Programmes, India HIV/AIDS Alliance, added, “Discrimination and stigma continue to be a daily part of the lives of too many PLHIV. India’s treatment programme is an example to the world of what can be achieved through committed collaboration. We have learned much in the past decade, and we need to continue to build on this strong foundation. Free ART, coupled with the care & support services provided through the growing network of Vihaan centres, will ensure the vitality and good health of India’s PLHIV community and their families for years to come.”

__________________________

India HIV/AIDS Alliance (Alliance India) is a diverse partnership that brings together committed organisations and communities to support sustained responses to HIV in India. Complementing the Indian national programme, Alliance India works through capacity building, knowledge sharing, technical support and advocacy. Through our network of partners, Alliance India supports the delivery of effective, innovative, community-based HIV programmes to key populations affected by the epidemic.

With support from the Global Fund to Fight AIDS, Tuberculosis and Malaria, Vihaan is establishing 350 Care & Support Centres across India that will help expand access to services, increase treatment adherence, reduce stigma and discrimination, and improve the quality of life of PLHIV. The centres will support PLHIV, including those from underserved and marginalized populations who have had difficulty in accessing treatment including women, children and high-risk groups in 31 states and territories.

National Coalition of People Living with HIV in India (NCPI+) is a national representative body of, for and by PLHIV. NCPI+ aims to increase active, transparent and constructive participation of PLHIV and health activists to strengthen care, support and treatment across the country and improve the quality of life of individuals and families affected by HIV. NCPI+ serves to represent the needs of PLHIV networks and organisations for key population and works with activists to join together to speak with a clear voice, strengthen advocacy, and improve the health and quality of life of PLHIV in India. 

“No doubt, ART is my friend indeed…” A Community Profile to Mark 10 Years of Free ART in India

Naomi at the NNP+ offices in Nagaland (Photo: India HIV/AIDS Alliance)

Naomi at the NNP+ offices in Nagaland (Photo: India HIV/AIDS Alliance)

A member of India’s PLHIV community reflects on ten years of access to free antiretroviral treatment.

For Naomi Semy, life almost came to a standstill when she tested positive. “As I saw the test report, everything went blank. I just thought, ‘I am dead.’”

For many days, she did not talk to anyone and didn’t step out of her home. One day gathering courage, she decided to meet a doctor. Luckily for her, the doctor was supportive. He counselled her on how treatment could help her live a long and healthy life with HIV.

She promptly decided to begin antiretroviral treatment (ART). “I was buying medicines from a private clinic, and it was very expensive. The cost made things difficult, but I managed somehow.”

Then. in 2004, the government opened an ART centre in Kohima, Nagaland, that offered no-cost services. “There was no looking back since then. What more could I have asked for than to live healthy with HIV.”

Naomi today leads the Network of Naga People Living with HIV and AIDS (NNP+). The network has 4,000 registered members and is reaching out to 10,000 people living with HIV (PLHIV) in the state.

Having successfully managed HIV for 10 years now, Naomi is now a role model for other PLHIV. “How long we live is not important but how well we live is. This has guided me to live a fulfilling life despite being HIV positive. No doubt, ARV is my friend indeed.”

__________________________

With support from the Global Fund to Fight AIDS, Tuberculosis and Malaria, Vihaan is establishing 350 Care & Support Centres across India that will help expand access to services, increase treatment adherence, reduce stigma and discrimination, and improve the quality of life of PLHIV. The centres will support PLHIV, including those from underserved and marginalized populations who have had difficulty in accessing treatment including women, children and high-risk groups in 31 states and territories.

“ART is my partner for life…” A Community Profile to Mark 10 Years of Free ART in India

Kanjibhai and his wife in their home in Gujarat (Photo: India HIV/AIDS Alliance)

Kanjibhai and his wife in their home in Gujarat (Photo: India HIV/AIDS Alliance)

A member of India’s PLHIV community reflects on ten years of access to free antiretroviral treatment.

Kanjibhai B Gadhia is a content man. A well-settled farmer from Amreli district of Gujarat, he tested positive 11 years ago.

“I fell seriously ill then. My condition was deteriorating day by day, and my family had lost all hope. No doctor was ready to treat me,” he recounts.

Then a private doctor came forward as a lifesaver. He not only treated him but also advised him on the importance of treatment adherence.

“He cautioned me about possible side-effects of the drugs so that I was mentally prepared for them and would not discontinue the medicines.”

As free anti-retroviral treatment (ART) was not available then, Kanjibhai got his medicines from the same doctor.

“In the beginning, I had bouts of severe nausea, vomiting, lack of appetite, and stomach cramps. But I did not give up, and slowly the side-effects vanished,” he says. “But what was more harder to manage was the cost of medicines. My wife had also tested positive, and after buying the medicines, we had hardly anything left.”

Thankfully, the government’s initiative to provide free ART at government hospitals came to Kanjibhai’s rescue.

“A representative from the district-level network of people living with HIV (PLHIV) told me about the scheme. In no time, my wife and I had registered. Since that day, we have not missed even a single dose. It is due to this regular ART regime that I am living a healthy and content life. ART is my partner for life, and I will never give it up.”

__________________________

With support from the Global Fund to Fight AIDS, Tuberculosis and Malaria, Vihaan is establishing 350 Care & Support Centres across India that will help expand access to services, increase treatment adherence, reduce stigma and discrimination, and improve the quality of life of PLHIV. The centres will support PLHIV, including those from underserved and marginalized populations who have had difficulty in accessing treatment including women, children and high-risk groups in 31 states and territories.

“I didn’t choose HIV. HIV chose me…” An Activist’s Reflection on 10 Years of Free ART in India

Manoj Pardesi at the “We Can End AIDS” March during the 19th International AIDS Conference in Washington, DC, in July 2012.

Manoj Pardesi at the “We Can End AIDS” March during the 19th International AIDS Conference in Washington, DC, in July 2012.

Pre ART: 1986 to 31st March 2004

“You have AIDS,” a counselor said to me in 1997. I don’t remember the exact date, but suddenly everything went blank. The counselor had spoken to me for more than 20 minutes, but I just remembered his one sentence: “You have AIDS.” Only one thing came to my mind: everything is finished. I cursed God. Why did He choose me? Why only me?

My first question was, “How long I will live?” He started calculating and replied, “You have another two years.” I was relieved. I was thinking that I would die in two months. I asked my next question, “Is there any treatment?” The counselor told me, “Don’t even think about medication. It costs Rs. 60,000/- per month.”

Where would I get the money? After much thinking, I made a plan. I took a life insurance policy for Rs. 5,00,000/- and decided to commit suicide. At least my family will get some money after my death. Twice I attempted suicide, but luckily or unluckily, I survived.

Then came a turning point in my life. I chanced upon the famous Hindi movie “Anand.” Rajesh Khanna’s words in the movie completely changed my whole perception and attitude towards life: “What’s the difference between 70 years and six months? What about the millions of moments I will live in the next six months? Life should be large not long.” (“Kya farak hai 70 salon aur 6 mahine mai? Aane wale 6 mahino mai jo lakho pal mai jine wala hun uska kya hoga? Zindagi badi honi chahiye, lambi nahi.”)

I began my search for accurate, scientific information on AIDS and ended up at National AIDS Research Institute (NARI). I got answers to my questions, sometimes silly ones. I still remember the smile on the doctor’s face and his occasional chuckle.

In August 1999, I started working with networks for people living with HIV (PLHIV). This gave vision and purpose to my life. To this day, I remain thankful for the support of my peers, doctors and friends on positive living, which has kept me strong even before anti-retroviral treatment (ART) was available and affordable for me. I decided to work on HIV. I wanted to make a difference, but I also wanted to make sure that none of my family or friends get infected.

As time passed, there were many sad moments. I lost close friends who could not afford ART. Each death created fear and weakened my confidence. Yet, somehow I gathered courage to advocate for the rights of PLHIV and for ART. We started raising our voices on every platform and at every forum we could find.

Post ART: 1st April 2004 onwards

On World AIDS Day, 1st December 2003, the government announced free ART. The programme would start from 1st April 2004. Though I was not yet on treatment, it gave all PLHIV so much hope. Now we will could imagine a future in which we would not die of AIDS.

Take the case of my close friend Prashant. His CD4 had dipped down to a single digit in 2003, but he is still with us, healthy and content. His two sons have started collage. Last year he gave me sweets saying that his younger son got 74% marks in 12th standard at school, and both of them were going to take admission in college. Tears came rolling down, and we just hugged each other. There was no need for any words. There were only feelings to understand. The hug was for a healthy and productive life, which was possible because of free ART.

There are many such success stories that might not be published in any report. Free ART is not just medication we swallow twice a day. These pills are hope and confidence to live productively in good health. ART and PPTCT interventions have brought happiness and wellbeing to the lives of millions.

In January 2014, we were remembering this journey, when one of our friends gave the idea of celebrating ten years of free ART. “What a wonderful thought!” I said to myself. Suddenly the amazing journey of past ten years came to life again. This small, informal discussion took shape into a big occasion in April 2014 – Treatment@10 – to convey the gratitude of the PLHIV community. These ten years would not have been possible without the hard work, commitment and passion of so many people, organizations, and partners. Together we have made our county’s care, support and treatment program a model for the rest of the world.

India’s ART program will continue to grow stronger. The commitment to expand care & support services is transformative. The new Vihaan Care & Support Centres are testament to how closely government, civil society and the PLHIV community can work together to expand access to services, increase treatment adherence, reduce stigma and discrimination, and improve the quality of life of PLHIV and their families.

My own journey of 21 years still surprises me. What a fantastic, wonderful and meaningful journey it has been. Now I thank God. I am proud to be HIV positive and proud of my country, my government, and my community for bringing us so far in ten years. I didn’t choose HIV. HIV chose me to be a mediator, an activist, and an agent of positive change.

__________________________

The author of this blog, Manoj Pardeshi, is General Secretary, National Coalition of People Living with HIV in India (NCPI+). Living with HIV for more than two decades, Manoj has been at the forefront of raising public awareness about HIV, fighting discrimination against PLHIV, and advocating for increased action to by government and other stakeholders to expand access to treatment, care, and support services across India.

NCPI+ is a national representative body of, for and by PLHIV. NCPI+ aims to increase active, transparent and constructive participation of PLHIV and health activists to strengthen care, support and treatment across the country and improve the quality of life of individuals and families affected by HIV. NCPI+ serves to represent the needs of PLHIV networks and organisations for key population and works with activists to join together to speak with a clear voice, strengthen advocacy, and improve the health and quality of life of PLHIV in India. 

 

Realising ART Adherence among People Who Inject Drugs in India

Hridaya educates PWID living with HIV about positive prevention, emphasizing the importance of adhering to ART treatment regimens. (Photo by Prashant Panjiar for India HIV/AIDS Alliance)

Hridaya educates PWID living with HIV about positive prevention, emphasizing the importance of adhering to ART treatment regimens. (Photo by Prashant Panjiar for India HIV/AIDS Alliance)

Adherence to antiretroviral therapy (ART) is strongly correlated with HIV viral suppression, reduced rates of resistance, an increase in survival, and improved quality of life. Yet there are numerous cases in India of people living with HIV who exist in co-morbid conditions: dependent on substances but dropping their ART regime due to societal stigma and discrimination or to a lack of understanding about the need to adhere to treatment.

Lamyanba (name changed) from Imphal has been injecting drugs since 1989. When he tested positive for HIV recently, he had a dangerously low CD4 count of 19 and was immediately put on ART. He responded favourably to treatment, and his CD4 count increased to 600 in a span of six months. When his health improved, he decided to stop the treatment without consulting a doctor or service provider. Lamyanba’s decision is unfortunately too common.

Recognizing that people who inject drugs (PWID) living with HIV frequently drop out from ART treatment, the Hridaya programme is undertaking active monitoring to address this problem. A tracking tool has been developed to monitor a client’s routine diagnostics. The tool indicates the dates for ART follow-ups, and an outreach worker contacts clients to remind them of their follow-up appointments. Outreach workers also keep a check on client CD4 counts.

Supported by Government of Netherlands, Hridaya works in the states of Bihar, Haryana, Uttarakhand, Jammu and Manipur to strengthen harm reduction interventions at state and district levels. Aiming to cover all PWID in these states, the programme focuses on the unmet harm reduction needs of vulnerable drug-using populations and complements HIV prevention activities in each state under India’s National AIDS Control Programme.

Hridaya routinely educates PWID living with HIV about positive prevention focusing on the value of adhering to ART treatment. The programme team works with clients to identify barriers to accessing ART treatment and advises on the need for strict adherence to the treatment regime. In Imphal, Hridaya aims to keep 95 percent of clients on treatment and minimize loss-to-follow-up. With this support, Lamyanba is back on ART, leading a healthy positive life.

__________________________

The author of this blog, Roshan Ningthoujam, is programme manager for Hridaya at Social Awareness Service Organisation (SASO) in Manipur, India.

Spanning five countries (India, China, Indonesia, Kenya, and Malaysia), Community Action on Harm Reduction (CAHR) expands harm reduction services to more than 180,000 people who inject drugs (PWID), their partners and children. The programme protects and promotes the rights of these groups by fostering an enabling environment for HIV and harm reduction programming in these five countries. CAHR is supported by the Ministry of Foreign Affairs, Government of Netherlands

In India, CAHR is called ‘Hridaya’ and is implemented by India HIV/AIDS Alliance in partnership with SASO, Sharan and a number of community-based harm reduction organisations and networks. This programme helps build the capacity of service providers, makes harm reduction programmes more gender-responsive, improves access to services and advocates for the rights of PWIDs. In addition to providing services, Hridaya has a strong capacity building component to support advocacy, knowledge management and improved services for PWIDs.

Renewing Our Commitment to the Global Response to HIV/AIDS

Image 1Globally, the incidence of new HIV infections and the number of AIDS-related deaths are decreasing. According to a recent report by UNAIDS, the annual number of deaths fell from 2.3 million in 2005 to 1.6 million last year. In 2001, there were more than half a million new HIV infections in children; in 2012, there were just over a quarter of a million.

Much of this progress is due to significantly expanded access to antiretroviral drugs particularly in low- and middle-income countries. Investment in antiretroviral drugs increased from $3.8 billion in 2002 to $18.9 billion last year. Significant results have also been achieved in reducing the number of deaths among those co-infected with TB and HIV, which have declined by 36% since 2004.

Despite flattening donor funding for HIV, which remains around 2008 levels, domestic spending on HIV has increased, accounting for 53% of global HIV resources in 2012. Nonetheless, the total global resources available for HIV in 2012 were estimated to be roughly US$ 3-5 billion short of the US$ 22-24 billion estimated to be needed annually by 2015.

The UNAIDS report also reviews progress on ten specific targets which were set by United Nations member states in the 2011 Political Declaration on HIV and AIDS. Progress has been slow in protecting human rights, securing access to HIV services for people most at risk of HIV infection, and in preventing violence against women and girls––all key factors in reducing vulnerability to HIV. Gender inequality, punitive laws and discriminatory actions continue to hamper national responses to HIV, and concerted efforts are needed to address these persistent obstacles to the scale up of HIV services for people most in need.

With support from donors like the Global Fund, PEPFAR, and the Bill & Melinda Gates Foundation, India HIV/AIDS Alliance in collaboration with hundreds of organisations across the country supports sustained and effective community-based responses to HIV. We focus our efforts on populations most affected by the epidemic, including men who have sex with men, transgenders, hijras, people who inject drugs and sex workers, as well as people living with HIV from all walks of life, including women and children.

Watch for our social media series, ‘The Six Strides’. Over the coming week, we will highlight the progress that we have made with our partners in six of the ten HIV/AIDS targets defined by the UN in the 2011 Political Declaration.

The Best of Times, the Worst of Times: Do WHO’s New ARV Guidelines Serve the Needs of Key Populations?

WHO_Tx_blog2

One of the highlights of the recently concluded 7th IAS Conference on HIV Pathogenesis, Treatment and Prevention in Kuala Lumpur, Malaysia, was the launch by World Health Organization (WHO) of new Consolidated guidelines on the use of antiretroviral drugs for treating and preventing HIV infection.

Announced on 30 June 2013 at a satellite session, the new guidelines, if implemented at scale, could help avert an additional 3 million deaths and prevent 3.5 million more new HIV infections between now and 2025. At their core is the idea that earlier initiation of anti-retroviral (ARV) drugs will help people living with HIV (PLHIV) live longer and healthier lives.

The new guidelines recommend initiation of anti-retroviral treatment (ART) in all adults who have a CD4 count of 500 cells/mm3 or less, and priority should be given to individuals who have CD4 counts less of 350 cells/mm3 or less. Additionally the new guidelines also recommend that ART should be initiated immediately for PLHIV coinfected with TB or Hepatitis B and for those in serodiscordant couples. It also calls for Initiation of ART in all children infected with HIV below five years of age, regardless of WHO clinical state.

Soon after the launch, one of the conference participants, a self-identified MSM living with HIV, aptly described the new recommendations to me: ‘It was the best of times, it was the worst of times.’ One of the guiding principles behind the new recommendations is ‘promoting human rights and health equity,’ and for the first time WHO clinical ARV guidelines acknowledge the distinct challenges faced by key populations affected by the epidemic—men who have sex with men, transgenders, people who inject drugs, and female sex workers.

This is great progress for many reasons. The failure of the global HIV response to adequately acknowledge and address the barriers that prevent key populations from accessing treatment and related clinical services continues to be a gap of significant proportions. Structural, legal, institutional, and social forces keep key populations from entering into the continuum of care. For example, Alliance India conducted operations research in 2012 to assess the quality of HIV-related services for MSM and transgender populations in India. The research identified specific issues such as lack of confidentiality, lack of privacy, overall unfriendly environment at the service centre, and insensitivity amongst health-care providers at this country’s ART centres.

In fact, a recently published article in the New India Express describes how India’s transgenders continue to face serious barriers to accessing HIV treatment and other health services. Rather than face discrimination and stigmatizing attitudes, too many are avoiding clinics and not getting the care they need.  One transgender describes her experience, ‘When we go to big hospitals, the nurses send us away. They refuse to examine us because they feel disgusted to make physical contact with us.’

In India and elsewhere, key populations are routinely denied their right to health. They are refused treatment and other services and have little or no access to care and support. Like it or not, these are still the worst of times for too many key populations. Though these guidelines do offer hope and optimism, we need to reimagine how key populations access health services and ensure that governments and donors like the Global Fund and PEPFAR include expanded access for key populations as an essential component of their supported treatment programming. If we take the lives of key populations seriously, the promise of the WHO’s new ARV guidelines might just guide the way to a better future.

___________________________

The author of this post, Yadavendra Singh, is Senior Programme Officer: Capacity Building for Alliance India’s Pehchan Programme.

With support from the Global FundPehchan builds the capacity of 200 community-based organisations (CBOs) for men who have sex with men (MSM), transgenders and hijras in 17 states in India to be more effective partners in the government’s HIV prevention programme. By supporting the development of strong CBOs, Pehchan will address some of the capacity gaps that have often prevented CBOs from receiving government funding for much-needed HIV programming. Named Pehchan which in Hindi means ‘identity’, ‘recognition’ or ‘acknowledgement,’ this programme is implemented by India HIV/AIDS Alliance in consortium with Humsafar TrustPNRO,  SAATHII, Sangama, and SIAAP and will reach 453,750 MSM, transgenders and hijras by 2015. It is the Global Fund’s largest single-country grant to date focused on the HIV response for vulnerable sexual minorities.