39^th

UNAIDS PCB Meeting

Thank you, Chair.

The NGO Delegation is happy to hear the message of Mark Dybul from the Global Fund that re-emphasises the complementarity of UNAIDS Joint Programme and the Global Fund, it is not an either-or and it can never be.

Civil society sees very clearly the need for a robust UNAIDS that not only functions on the mandate of the UNAIDS Strategy 2016-2021, but  also ensures that the optimum yield is obtained from other Global HIV investments such as the Global Fund, UNITAID and PEPFAR. The Joint Programme provides global standards and targets that these institutions can then be measured against, such as 90-90-90, Investment framework or Fast track strategy. The “eco-system of the HIV programme” (as mentioned by Michel in his speech) will remain a healthy eco-system only if all the actors are strong and effective.

Based on the experience of civil society we would like to acknowledge the great work done by the Joint Programme in supporting us to submit stronger civil society proposals to the Global Fund, as well as for newer mechanisms such as the Key Populations Investment Fund. The diplomatic leadership of UNAIDS has been immensely utilized in my own country, India, to establish a system of dialogue between government and civil society that can go beyond blaming or finger pointing. The work that the Joint Programme has done on Human Rights and efforts for the removal of punitive laws and criminalization of key populations, particularly in difficult environments such as the Philippines is not only commendable, but extremely necessary to ensure that investments done by all the member states and the donor institutions lead to meaningful outcomes.

As the Global Fund transitions from some countries and responsibility of supporting communities fall on governments, it is all the more critical that a strong Joint Programme is able to work actively with the communities, civil society as well as with government to ensure that the gains of the investment is not lost, that the rights of the community to get services is not lost, that the voices and space of civil society is not taken. Having a strong UN Joint Programme is very critical for transition countries and the so-called middle income countries, where the Global Fund and other donors might not work or transitions, but UN Joint programme will stay and will have to stay.

There is also important role of UNAIDS in the countries where the Global Fund might not matter at all, but where stigma and discrimination, criminalization of social movements, humans right violations and gender inequalities continue to fuel the epidemic. In Latin America, for instance, we have plenty of examples. And the NGO Report has also concrete information about these type of situations.

The mistake of considering funding for services similar to the funding for vision setting, is dangerous. We strongly feel that replenishing the Global Fund fully without funding the Joint Programme fully – will be like having a body without a soul. As a smart investor we urge the Member States to invest and fully resource the Joint Programme to protect your investment in all the other development mechanisms.

Angeline Chiwetani is my name and I am speaking from a perspective of a woman living with HIV and a mother shall continuously share lived experiences, I am working with Widows Fountain of Life as a Director. Working directly with women living with HIV and widowed due to HIV related deaths where a lot many are still struggling with issues of acceptance, disclosure and coping mechanism…

Having been married at a young age and being in the comfort of a marriage where there was belief that one cannot acquire HIV in marriage. Getting an HIV test was not a priority then. Complexities of HIV within a family and within a marriage including hostility and abuse from the partner puts female spouse at greater risk, and however my extended family advised me to stay in this marriage (“it is the way marriage is….”) normalizing the abnormal, socialization issues; my lack of a job and finances further trapped me. This is a common story for millions of African women.

As my husband was sickly and dying, I sought an HIV test for myself and found out I was positive. By the time my husband died both my children were at the age of 3 and 7 yrs. Doctors gave me only 6 months to live and plan my things since l had tested HIV positive.  But today thankfully both my boys, 19 and 23, are negative and l am still alive. The possibility that my boys could have been positive tormented me but in those days messages did not encourage mothers to take children for testing unless they were sick, very traumatic. Even then when the boys had a headache, it was a source of terror for fear that it could be HIV. This lived experienced for a mother who knew what she needed to do but could not do it was so painful that l ended up starting a support group of young mothers and young widows for social support.

After having taken forever to disclose to my children, Eventually I then disclosed to my  sons at 13 years, and the other at 8 years.  They had been suspicious as they had seen their father dying on my part l had waited for death which didn’t come and felt l needed to disclose to my children and they became part of my support system. With the passing of husband, the 3 of us became very close and the boys became my treatment buddies.

I turned my challenges to be opportunities, my HIV experience motivated me to get training and become a peer counsellor.  Mothers of children living with HIV would come for counselling trying to deal with disclosure issues to their children . I always remind them that disclosure was a process so we took steps and precautions at a time. Also addressed stigma and discrimination to their children. I then tested the boys when they were 20 and 16, 3 years ago. Now the boys are 19 and 23, and they are adolescents dating, and navigating a world with HIV. At family level we talk about SRH and HIV, reminding them that there are also youths of their age that were born HIV positive but who are also healthy that one can not tell. They now bring issues to the table for discussion.

Key things that we all need to put in place is Access to information, especially for the hard to reach areas, my special mention to people who have hearing and visual impairments, they are part of our communities. As communities we are the foot soldiers of our health system, the more we are equipped the better the communities become.  We can not manage to watch mothers and children living with HIV. Let us close the tape…

1. There is still an urgent need to remind adult women that they too can acquire HIV. Marriage is not a safety net. HIV cut just pass through.
2. Communities, especially older mothers and aunties, push women and girls into marital vulnerability, trapping them into dangerous relationships saying “this is what marriage is”. These enablers should be stopped. There should be a serious effort to stop this, and not just a weak programmatic response that dances on the edges.
3. There should be greater clarity about testing adolescents, especially those whose mothers are living with HIV. Case-finding for children living with HIV should begin with the positive mother but should test all her children, not only the smaller (under 10).
4. Programs tend to prioritize girls, but they should really target both boys and girls. This way the boys do not end up ignorant and oppressing girls when they become husbands.

The NGO Delegation expresses sincere appreciation to UNAIDS for the efforts taken over the last years to support and motivate the HIV response for children.

Some members of the board might remember that a report was provided to the PCB in 2014 describing a heartbreaking prevention and treatment gap between the number of children needing HIV treatment and the amount of treatment available for them. (Get numbers from report). At that time, I shared a few words about my own experience in the hopes of encouraging greater urgency among countries and donors to ensure that women in lower income countries have the same access as those in countries like mine to decent antenatal care, HIV prevention, and HIV diagnostics for early identification of HIV status when they have children. Angeline spoke of the emotional torment from not knowing her sons’ HIV status…I know this torment…there are other women in this room..a few of us…who know this torment.

The progress in improving access to pediatric diagnostics and treatment is progress that not only keeps women and their children alive, it also protects stronger family bonds, emotional support, mental health, and reduces at least one source of trauma in the lives of women and children living with HIV.

The Decision Points that the PCB adopted in 2014 were initially developed by the NGO Delegation in collaboration with our civil society colleagues and negotiated together with every member of the PCB to ensure that we had provided guidance to the Joint Programme that reflected the needs of children across all of our regions. We called, in particular, for involvement of children living with HIV, the inclusion of their voices, in the programmes and studies that affect them, including related to the HIV-related stigma and discrimination that they face. In my intervention at the time, I noted that there is no one in the world more likely to be spoken for, than listened to, than children. We ask that attention to the GIPA principle include attention to children, adolescents, and young people living with HIV from all of our communities.

The focus on stigma and discrimination faced by children and young people is much appreciated and we look forward to further steps in this direction. It is dismaying, however, that, even in the context of the decision points for this report, we cannot move away from stigmatizing terms like “Mother to Child” transmission. The NGO Delegation has been in many conversations with other PCB members and we do understand that those who choose to maintain this language do not generally wish to further stigmatise women living with HIV. However, women living with HIV have been calling for many years to change this terminology to language that does not point a finger of blame at women living with HIV, for the language that we use to be that of “vertical transmission.” We have noted repeatedly in multiple venues, with too little success, that there is no other process of HIV transmission that names a person as the source of HIV acquisition. Certainly, we know in our bodies that no one wants their baby to be born fully healthy than the mother who is carrying that child. So why would we work within stigmatizing frameworks that say again and again: if your child is HIV-positive, it is your fault, you are to blame? The NGO Delegation has conceded that we do not have enough support now to change the terminology in the Decision POint from “mother to child” to “vertical” transmission but we wish to say publicly that we strongly oppose this terminology.

We offer our appreciation to Brazil, Uganda, and Chile, and UNICEF for using the non- stigmatizing language of “vertical transmission” in their remarks today. We also note with appreciation the adoption by UNAIDS of the language of “vertical transmission” in the 2016-2021 Strategy.

The world is at a critical moment in the history of the AIDS epidemic and the HIV response. We have a four-year window of opportunity that represents a make-or-break moment to end the AIDS epidemic by 2020.

We were the first, as Communities to respond to the epidemic three decades ago and have since taken a myriad of actions to help people access HIV services as well as adding a human face to the response in our diversity.

Sex workers, transgender people, people living with HIV and other groups have become researchers, producing data for key global stakeholders such as the World Health Organisation (WHO). A new funding scheme in Ethiopia and Tanzania from international NGO Comunità Volontari per il Mondo has enabled people living with HIV to train nearly 4000 government officials and community leaders on the realities facing key populations.

We can continue therefore to document that community responses work, not only because they are cost efficient but also because they actually result in good health outcomes. In some cases they were the first to deliver HIV services to key population groups before state facilities. For instance  In Mali, before the government launched its own programme, antiretrovirals were first brought into the country through community organization, In South Africa, AIDS treatment activists conducted ground-breaking work in advocacy, community mobilization and litigation to increase access to care and treatment across the continent, in Uganda, TASO (the  AIDS Support Organization, was the first to organize  PLHIV into support groups through which they are enrolled into HIV care and treatment.

With the increasing understanding of the decline in HIV global HIV financing landscape despite the increase in number of people who rely on community led HIV service delivery, plausible models for delivering funding to grassroot communities of women, PLHIV, young people and key populations should be the people who are on the driver seat of  the fast track.

Mr. Chair; A huge difference between estimated needs and actual spending on community led responses, continues to undermine our efforts. In order to make significant progress therefore, the investments to enable the end of AIDS by 2030 need not only be definitively earmarked but  be increased and front-loaded during the next four years. And we need strong indicators in the 2017 Global AIDS Monitoring Framework to be able to track these investments, particularly the 30% of all service delivery that must go to communities, and 6% of the overall AIDS funding that must go to social enablers such as advocacy and community mobilization.

However, unless we enable continuation of an impactful community led response, young people, women, girls, drug users, sex workers and other key populations’ access to comprehensive HIV services including their social protection will be undermined. For instance when the Global Fund withdrew from Romania in 2010 after the country had gained middle-income status, this created a financial gap for the community led response, which led to a drastic increase in HIV cases, specifically in key populations. Among people who inject drugs, new HIV infections rose from 3% in 2010 to 29% in 2013. Much of this increase is linked to the lack of funds to provide targeted prevention interventions for people who inject drugs.

Worse still, targeting key affected populations in challenging situations e.g escalating levels of stigma and discrimination, criminalization among others create barriers and disincentives for them to access services, and more broadly propagate distrust and drive key populations underground and to the margins of society. This underscores the need to completely rely upon grass root networks of young people, women, girls, sex workers, transgender and other key populations, to provide data on these groups, with large variations in data collection.

The story, which the Joint Program tells well of  “How AIDS Changed Everything,” is a story of international solidarity anchored on a strong pillar, a community led response, where communities have invested their efforts to reach key  populations with services that meet their needs and as such, continued scale-up of a fully funded community led response, is critical to ending the epidemic.

Thank you, Chair.

The NGO report has given us a scan of the situation communities are facing in the current financial crisis. In many countries communities are in danger of disappearing.

In Latin America and Caribbean it seems that donors have agreed to do a mass exodus of the region, at least that is how it looks from the perspective of communities.

UNAIDS presence is scarce, PEPFAR is leaving many of our countries, countries are transitioning which means that The Global Fund is leaving …. And amidst all this we feel abandoned and betrayed. For a short period there was an intense interest to set up new networks and NGOs and then suddenly we have been abandoned …. It is like they helped us give birth to our networks and then have left us and have not breastfed them to be able to grow and now our communities find themselves in malnutrition and in starvation in the verge of death.

My organization received help to register and have our first 3 or 4 meetings, and then received some funds to implement activities. But since March this year all our staff has transformed into volunteers. Because simply we can’t access any funds for salaries. We continue to do home visits, accompany our peers, monitoring access to services — monitoring and reporting stock outs … even without funds we have continued doing our work … but this does not make it ok.

They don’t have the capacity, it is too technical, they can’t manage funds, it’s too much risk … and on and on and on … this are the excuses we hear so frequently … it is a never ending story and a continuous challenge to be able to prove that we are worth and capable, that we are passionate but also technical … it is time you stop giving us these excuses and put the money where it is needed most and where it is more cost effective …. With communities.

Of course it will appear that we won’t have the capacity if you want to assess small NGOs in the same way international huge NGOs are assessed … its time to make a difference and I urge the Joint Programme to be an example to other donors that funding small communities is possible and highly efficient — I am sure that others will follow with the example.

We appreciate the contributions of Canada but we need to also warn that domestic funding for communities should come with a guarantee not to affect our autonomy. And this does not mean we ignore the responsibility of international donors.

And just in case anyone would like to argue that they don’t know how to get funds directly to communities – just come and talk to us we can give some valuable lessons, after all as communities we always find a way around things and we are able to achieve the unthinkable having a global HIV response is one proof.

Nothing is impossible with passion and will. One just has to genuinely care for people.

Thank you.

Thank you Chair. Let me start with thanking the speakers for opening the dialogue on HIV and ageing, a very timely choice for the topic of this Thematic Day. These excellent contributions have already highlighted the complexity of the topic.

In April this year I had the opportunity to attend a European conference on ”Ageing with HIV” where among many issues, we were looking at the reasons for faster or in other words premature ageing for people living with HIV. Symptoms and conditions that are related to older age, such as dementia, or reduced bone density occur at an earlier age in PLHIV. The reasons are multiple and complex. They are the side effects of the presence of the virus itself and the inflammation it triggers in our bodies, but are also the side effects of older and more toxic ARVs.

Research shows and there is consensus that thanks to antiretroviral treatment, people living with HIV can have a life expectancy of those without the virus, moreover, since the results of the START study were published in early 2015, we also know that in case of early diagnosis and treatment initiation, there are significant health benefits of reduced side events and co-morbidities.

To avoid premature ageing in people living with HIV, we need early diagnosis and early treatment with more tolerable drugs with improved resistance profile and non-toxic combinations. Can health systems afford them at the current prices, taking into account that the current coverage of treatment, regardless of the significant improvement in the past years is still below 50% globally?

The current costly R&D structure – especially research for a cure – and pricing of medications need to be addressed if we are to provide timely access for all at an affordable price, taking into consideration a country’s economic performance and its burden of the epidemic.

Another urgent issue is the preparedness of health- and social care systems to accept and provide care for people living with HIV. As thanks to treatment, people living with HIV live longer lives, they are also more likely to contact and use health- and social care institutions due to the co-morbidities that are side effect of HIV or ARVs or simply due to their older age. Are our health- and social systems free of HIV and key populations related stigma and discrimination?

There is also need for training for health- and social care workers both on the medical aspects of living with HIV but also on sensitivity towards people living with HIV and other key populations.

We call on the Joint Programme to investigate with its stakeholders alternative and affordable R&D structures and we encourage the member states to include HIV issues in their medical and social education curriculum.

Thank you Mr. Chair,

26 years ago at the age of 25, I learned of my HIV diagnosis through a phone call from a hematologist. I thought my life was over. Indeed, in the 1980s and early 1990s, the outlook for HIV+ people was bleak.

After a week of enduring severe side effects from heavy doses of AZT, the only viable treatment option at the time, I rejected the advice of my HIV specialist opting instead for higher quality of life in the short term, knowing my death from AIDS-related complications was looming in the very near future.

With a fractured family structure, substance use issues, no education, few employable skills and low self-esteem I somehow had the good sense to access year of weekly therapy sessions at the clinic which helped me realize that I was more than a victim. The people at the clinic didn’t judge me for the choices I had made in my life, including my choice to continue using drugs and sex working. Slowly, I made the choice to reduce my drug use on my own, without coercion from the social workers and medical staff.

Eventually, I stopped going to the clinic and avoided doctors and clinics even after the earth-shattering news in 1996 of Highly Active Retroviral Therapy. I refused the treatment on ethical grounds knowing that millions of people in Africa and elsewhere were dying from lack of access to the new life-saving treatments.

I wasn’t until my AIDS diagnosis, when my wife and son pleaded with me that I finally I resumed accessing the HIV clinic and began taking the new treatments in late 1998. It was then that I also connected with the Canadian Aboriginal AIDS Network and with my Indigenous culture embarking on a journey to come out of social isolation, depression and self-stigmatization to focus on my physical, emotional, mental and spiritual health.

While so many of my Indigenous relations have suffered terribly with HIV and co-morbidities, personally, I have never been hospitalized with anything HIV-related and continue to thrive with HIV. To my delight, my doctor suggested that HIV research should be focusing on PLHIV like me to study resiliency through culturally appropriate, strength-based approaches to healthy aging with HIV.

The world is deservedly moving towards focus on young people. There are discussions about demographic gains including in my country, India. In this scenario it is very important that we do not forget the needs, issues and risks that the older people need. People with access to life-saving HIV medicines are living longer but experience unique comorbidities as they enjoy later life requiring unique support strategies.

From experiences and studies it is clear that at 50 years of age women living with HIV have much higher possibilities of cervical cancer than women without , this  age goes down to 35 if the woman is a sex worker living with HIV. My transgender colleague always tells me that the highest vulnerability she had of HIV was when she was gender transitioning, and the second highest will be when she is going to be 50 and above. But in many countries, the age of risk is 15-49 years. I think a mistake HIV programme often make, is borrowing some of the ideas of reproductive health programmes. For years reproductive health was as far as we could go to talk about sex, but HIV has changed the world. Therefore, I can very well accept the age of reproduction to end at 49 years, but it is really not possible for me to accept 49 as age to end having sex, based on personal experience.

The national programmes, particularly for countries where the epidemic came a little later and where HIV is still concentrated within key populations, a response to the community that is aging with HIV or who might be vulnerable to HIV at older age is rare to see. It is heart moving to hear stories of men and women who contract HIV after or around 50 years of age and have to disclose their status and who have children or grandchildren who themselves are already in reproductive age.

As I move towards the group that is called “aging”, I realise that it is really sad in many countries and cultures including mine, that it is not only assumed but expected that women above fifty are asexual or at least silent about their sexual lives. There is also often a discussion about the needs of men, including men who have sex with men and male sex workers and their need for HIV prevention but rarely about women, women sex workers and trans-women.

It is time that UNAIDS Secretariat and the Co-sponsors take up the issues of older people and their needs for prevention of HIV and be bold to say, that when love and sex is life-long and not bound by age; how can HIV be?

Many thanks to the panel for a very interesting and informative session on HIV and Aging.

The conversation on aging with HIV is one that is very ripe particularly in the context of sub saharan Africa where a number of social and structural issues impact on older people living with HIV.

In many African countries, a reverse urban-rural migration occurs as people retire from public service and private practice and return to the rural country side to become custodians of their family estates and properties. Without universal social security, system medical insurance or assisted care and with health centers in rural areas having very limited capacity for managing HIV and other chronic illnesses associated with aging, these persons are pretty much left without treatment, care and support.

I would like to request the African ministers of health and state delegations in this chamber to open a conversation on the important issue of HIV and aging in the context of sub saharan Africa and to develop models of care that are appropriate for our context.

My appreciation again to the panel for a very enlightening discussion.

Thank you Chair. And thanks to all the speakers who showed their visions and described what it takes that people living with HIV could live long, healthy and happy live.

When I saw the title of the last panel of the day, I also gave some thinking of what the future might look like for us, people living with HIV. I would like to invite you on a time travel now.

It is the year of 2030. I have just turned 58, living and ageing with HIV for 24 years. I am at home, getting ready for work. Where exactly home is does not matter, as regardless of my country of residence, I can access the same quality treatment and care all over the world. I can be sure that I won’t be facing stock-outs of medication or diagnostics, as my HIV and general health care is reliable, sustainable, and affordable for the health system.

I can move around freely in the world as all countries have long removed their HIV-related travel- and residency restrictions, and I am not threatened by denial of entry or imprisonment in any country because my life-partner is from the same sex.

The radio is on: the news broadcast covers the story of closing down of the UNAIDS office in Geneva, Switzerland after the world leaders have announced that with global solidarity and unity we have managed to end the AIDS epidemic. They are planning to turn the building into a museum that not only exhibits the history of discrimination against and criminalization of people for who they are, who they loved or what they do but also will serve as an education centre for future generations.

2030 is still far away and there is a lot to do on the way. Ending AIDS does not only mean that we manage to stop an epidemic that we have lost millions of lives to. It also means fundamental social changes towards an accepting, inclusive and multi-coloured world that is free of stigma and discrimination. Where human rights are the guiding principles in all fields of life and poverty, social exclusion and marginalization are pictures of the past.

The future can only be even near to my this vision, if governments are accountable and ensure sustainable and affordable health systems, if member states choose life over patent, if the Joint Programme prepares the world to respect the wisdom of people aging with HIV. Let us work together to end AIDS by 2030 so that future generations and us can live long, healthy and happy lives with or without HIV.

Thank you for your attention.

I am a big brother to many children and ALHIV who have no hopes of reaching 30. However, if Musah made it in May 2016, I want them to hope that they can live longer too. Will they realize this dream only by testing and getting on treatment?

The WHO tells us that children and ALHIV have higher risk of mental health issues including depression, substance abuse, attention deficit disorder and learning difficulties, and address issues  whether the cause is social – a consequence of their socioeconomic backgrounds, family history – or biological. “ This still deserves close scrutiny and appropriate response.

Personally, I can’t help but wonder from time to time what this means for different people living with HIV who are not in my community. No one really has control of how old they will live to be though I know most of us admire our grand parents. Those stories of when they met and how long they have stayed married are so encouraging. Of how they travelled and the friends they made. My most favorite is from my maternal grand pa. His tales in the fight for independence. I am engulfed by pride when I hear of how he fought for the Mau Mau Revolution in Kenya. I have never quite understood how he knows all our names even when we talk to him on phone.

When you know your life depends on how well you adhere to your medication and you have to take it daily is no joke. I bet if you are not positive, this seems to make no sense but have you ever tried to take antibiotics for more than a week and wonder when the drugs will ever end? Or do you find yourself stopping it when the infection passes on without taking the entire dose? Now imagine this daily with not just one tablet. Some of my senior colleagues here had to go through taking a cocktail of drugs a day when ARVs were newly introduced. Colleagues, I applaud you for it took courage. I also salute those who lost the battle in the long run, when science had no tools, to manage HIV complications.

Mr. Chair, If a right to sexual and reproductive health is still a messy issue for adults populations, what about an adolescent who is living with HIV. Are they allowed to identify who they are, as boys, girls, trans, straight, gay it is even more complex?

Taking our life-saving medication may seem like a straightforward and obvious thing, to many policy makers, however it’s not just a case of popping a pill once a day. We need differentiated interventions for all PLHIV especially for those with cross vulnerabilities. As communities, we know when and how to reach out to our peers. This is why we are at the frontline, in the response. Mr. Chair, as communities of PLHIV in our diversity including adolescents, young people, Lesbian, Gay Bisexual and Transgender, people who use drugs, we are always going to do what we want to do for we know what works for us.

If you order us around, we’ll either get fed up and leave or we’ll ‘yes’ you to death. We don’t want to die,, we need HIV services that meet our unique emerging needs. Services that respect who we are, we reiterate that we  are not just people, we are individuals.

I thank you.