Keep the light on HIV: International AIDS Candlelight Memorial 2014

candlelightmemorial2014_blogAt least 35 million people are estimated to be living with HIV globally, with more than 2.1 million in India alone. Advancements in antiretroviral treatment (ART) have transformed the lives of people living with HIV (PLHIV). With access to ART, life expectancy of a positive person can be as long as someone who is not infected. But in spite of so much progress, AIDS is not over. Too many people don’t know they’re infected. Too many don’t have access to prevention, treatment, care, and support services. Too many are still at risk.

The light must be kept on HIV. Our concerted and committed efforts to fight the epidemic are still needed. To mark International AIDS Candlelight Memorial 2014, India HIV/AIDS Alliance joins with other organisations and communities around the world to remember those we have lost and recommit to a strong, effective and sustained response to HIV/AIDS.

Coordinated by the Global Network of People living with HIV (GNP+), the International AIDS Candlelight Memorial is one of the world’s oldest and largest grassroots mobilisation campaigns for HIV awareness. Started in 1983, the event takes place every third Sunday in May and is led by a coalition of some 1,200 community organisations in 115 countries. By mobilizing communities, the campaign raises social consciousness about HIV/AIDS and builds global solidarity in the response to the epidemic.

Today remember our work is not over. Services still do not reach all those who need them. Stigma and discrimination are a daily fact of life for PLHIV and other marginalized communities. Laws criminalize those most at risk, increasing their vulnerability. The end of AIDS will remain only a dream if we do not finish what we’ve started. Today light a candle and remember those we’ve lost, those who fought with us and in whose memories we continue this fight. Today and every day, let’s keep the light on HIV.

 __________________________

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.

Advertisements

Vihaan: A Ray of Hope in the Lives of PLHIV in India

People living with HIV are at the heart of Vihaan programme. (Photo by Prashant Panjiar for India HIV/AIDS Alliance)

People living with HIV are at the heart of Vihaan programme. (Photo by Prashant Panjiar for India HIV/AIDS Alliance)

“We are thankful to the government for providing free ART treatment. Without their support, we might not be alive today,” says Preeti with gratitude in her eyes. In her mid-thirties, Preeti is a mother of two from a backward district in Bihar. She contracted HIV at the young age of 18.

“I had no idea what to do and who to approach back then. HIV and AIDS were taboo. Now we have ART, and what we need along with treatment is care and support. Medication without proper support is of no use. I want to be an earning member of my family. My children are growing, so are their needs and still no one wants to offer jobs to people living with HIV,” she says.

Care and support are essential to effective ART programmes. PLHIV need support to access and adhere to treatment, to strengthen the capacity of families to manage HIV infection, to maximize the value of referrals and linkages to social protection schemes and services, to address instances of stigma and discrimination, and to reinforce positive prevention strategies.

To address these needs, India HIV/AIDS Alliance, working closely with the Department of AIDS Control (DAC) and with funding from the Global Fund, has initiated the Vihaan programme to scale-up care and support services for PLHIV in India. Meaning ‘dawn’s first light’ in Sanskrit, Vihaan complements the national treatment programme and has been designed in line with the National AIDS Control Programme IV (NACP IV) which promises “…universal access to comprehensive, equitable, stigma-free, quality care, support and treatment services to all PLHIV using an integrated approach.” Vihaan is the largest care & support programme ever launched.

PLHIV are at the heart of Vihaan. The programme ensures a robust, holistic care & support system for PLHIV – including high-risk groups, women and children – in 31 states and territories of India. The programme is establishing 350 Care & Support Centres (CSCs) as part of the national effort to improve treatment outcomes and to respond more effectively to the needs of people living with HIV. CSCs provide a range of care & support services and timely linkages to other government schemes to improve treatment adherence, overall social protection, and quality of life of PLHIV.

Vihaan relies on a range of civil society organisations and partnership with government to ensure the success of the programme. PLHIV organisations are key partners at every level. Nearly three-quarters of Vihaan’s implementing partners are PLHIV networks at state and district levels. Of the nearly 2,000 people engaged in the programme, roughly sixty percent are from the PLHIV community. Within the first three years, the programme expects to reach more than 1.2 million PLHIV.

Fatima, another woman living with HIV in Bihar, expresses her growing confidence, “Being positive myself, I realise how important care and support are in the lives of PLHIV. I am excited to be part of Vihaan and to make a difference in the lives of so many.”

Note: Names of community members mentioned in this blog have been changed to protect their identities.

 __________________________

The author of this blog, Rosenara Huidrom, is Associate Director: Care & Support at India HIV/AIDS Alliance in New Delhi.

With support from the Global Fund to Fight AIDS, Tuberculosis and Malaria, Vihaan is establishing 350 Care & Support Centres (CSCs) across India that will help expand access to services, increase treatment adherence, reduce stigma and discrimination, and improve the quality of life of PLHIV. CSCs 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.

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. 

 

Early TB testing is vital for an effective AIDS response: Government and civil society come together to reinforce this pledge on World TB Day

At the World TB Day press conference, representatives from the Department of AIDS Control, Central TB Division, civil society and affected communities discussed the need for early TB testing for PLHIV.

At the World TB Day press conference, representatives from the Department of AIDS Control, Central TB Division, civil society and affected communities discussed the need for early TB testing for PLHIV.

World TB Day is observed every year on March 24th. To mark this occasion, India HIV/AIDS Alliance today joined the Department of AIDS Control (DAC) and the Central TB Division (CTD) to create awareness about the importance of early detection and treatment of tuberculosis (TB) among people living with HIV (PLHIV) and strengthening HIV/TB collaborative activities at all levels.

In collaboration with DAC and with support from the Global Fund, Alliance India implements Vihaan, a care & support programme for PLHIV in 31 states and territories. The programme works with 17 regional and state level partner organisations and 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.

Vihaan is actively working to ensure that its frontline workers are supporting a range of HIV/TB collaborative activities in coordination with the district level TB units. James Robertson, Executive Director of India HIV/AIDS Alliance commented, “Vihaan is committed to increasing awareness of TB among the PLHIV served by the programme and, through intensified testing, ensuring that co-infected clients are fully supported to complete the full course of treatment.”

Tuberculosis (TB) is a major concern for PLHIV as their impaired immune systems make them particularly vulnerable to the disease. In spite of this, it remains difficult to persuade PLHIV to undergo testing for TB. The double stigma of TB and HIV often keeps PLHIV from visiting clinics to learn their TB status.

Manoj Pardesi, General Secretary of the National Coalition of PLHIV in India (NCPI+) said, “PLHIV are among the most vulnerable to falling ill with TB. We need to do more to diagnose PLHIV infected with TB and reach out to them with treatment.”

The total number of PLHIV in India is currently estimated at 21 lakh, which is third highest in the world (Source: Annual Report 2012-13, Department of AIDS Control). India is also has the highest TB burden in the world with an estimated 2.2 million new TB cases occurring annually. TB is the most common Opportunistic Infection (OI) among PLHIV in India.

Dr. R.S. Gupta, Deputy Director General, CTD, said at the event, “Regular screening of all PLHIV for TB is utmost important for prevention of TB mortality in this group.”

HIV and TB co-infection can be fatal. It is estimated that nearly 25% of AIDS deaths in India are TB-related. TB infection increases progression of HIV infection to AIDS and contributes to accelerated mortality. In 2007, it was estimated that 4.85% of TB cases in India are in patients who are also HIV-positive. Of more than 100,000 presumptive TB cases identified among PLHIV at ART Centres, more than 20% were found to have TB (Source: TB India 2011-Annual Status Report).

Dr. A.S. Rathore, Deputy Director General, Care, Support and Treatment at DAC observed, “It is important for PLHIV in India to get tested for tuberculosis. A lack of early testing increases morbidity and mortality in HIV/TB co-infected patients.”

Mona Balani, a woman living with HIV, noted that, “In too many cases, detection of TB happens too late. Many PLHIV patients reach treatment facilities at a terminally-ill stage.”

Early detection of HIV/TB co-infection and prompt provision of Antiretroviral Treatment (ART) and Anti-TB Therapy (ATT) are key interventions to reduce mortality in this population. Increased joint action by government and civil society to initiate early detection of TB among PLHIV is an important step toward addressing the challenge of HIV/TB co-infection and improving the health and wellbeing of PLHIV in India.

__________________________

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.