Agenda 4: Follow up on the thematic segment of the 38th PCB
Joint Statement by The Canadian Positive People Network (CPPN), the Interagency Coalition on AIDS & Development (ICAD) & ICASO
Thank you Mr. Chair. Dear Secretariat and member states:
The Canadian Positive People Network, a young, independent network of people living with HIV and HIV co-infections, along with the Interagency Coalition on AIDS Development, a Canadian coalition of organizations, individuals and stakeholders from the labour, faith, and HIV and development sectors, and ICASO, a Canadian organization that acts as a global policy voice on HIV issues that impact diverse communities around the world, would like to reaffirm the various recommendations that have been shared with us by the esteemed panelists on the 38th PCB to highlight the important role played by the communities in our effort to end AIDS by 2030.
As noted by Mr. Michel Sidibe during the Executive Director’s report yesterday and the talk by Mr. Mark Dybul earlier, creating an enabling environment and championing policies that protect key population groups such as members of the LGBTQ communities, people who use or inject drugs, migrants, sex workers, people who are or have been incarcerated, people with disabilities, and people living with HIV or HIV co-infections such as TB, Malaria and Hepatitis C, are vital if we are to reach the fast-track targets and achieve the SDG goal 3 of good health and well-being.
Breaking down structural barriers is one of the key areas we must address if we are serious about ensuring our communities can thrive to prevent and provide sufficient support to address HIV and HIV co-infections on the ground. To this date, HIV criminalization continues to be one of the most serious threats faced by people living with HIV and key populations today, as demonstrated in the UNAIDS reports “Ending overly broad criminalization of HIV non-disclosure, exposure and transmission” in 2013 and “the Gap Report” on 2014.
According to the data provided by the HIV Justice Network and GNP+ on the Global Trends in HIV Criminalisation between the period from April 2013 to October 2015, a total of 72 countries globally have adopted laws that specifically allow for HIV
criminalisation, either because the law is HIV-specific, or because it names HIV as one (or more) of the diseases covered by the law.
According to the report, there are 101 jurisdictions in the 30 states in the US that have HIV criminalisation laws in place, and that in Canada, at least 17 cases related to HIV criminalization for non-disclosure have been reported within the period.
The impact of a legal environment which criminalizes people living with HIV can be far-reaching and further the systemic discrimination faced by people and key populations living with HIV. For example, a recent research report released has also demonstrated that the mainstream media in Canada have unjustly racial profiled and stigmatized Black immigrant men in HIV non-disclosure cases with anti-Black, anti-immigrant and AIDS-phobic discourses which perpetuate systemic discrimination toward a specific racialized, cultural group. As well, the criminalization of HIV also negatively impacts women, and members of the racialized and Indigenous communities disproportionately.
Yet, there can be hope. This past year, we have seen the creation of the Canadian Coalition to Reform HIV Criminalization by people living with HIV, people who have been criminalized and imprisoned for HIV non-disclosure, AIDS service organizations, legal professionals and academics to work toward criminalization reform in Canada, an example of how communities have come together to work against the overly broad application of criminal laws against people living with HIV. The work of the coalition are supported by leading organizations and networks working in HIV criminalization including the Canadian HIV/AIDS Legal Network, and guidance provided by the Sero Project and Positive Women’s Network in the US, HIV Justice Network, and HIV Justice Worldwide.
We are especially excited about the recent announcement made by our Attorney General of Canada and Federal Minister of Justice Wilson-Raybould on World AIDS Day that Canada will embark on a re-examination of the criminal justice system in Canada related to the use of criminal laws against people living with HIV in HIV non-disclosure cases through a plan to review existing charging and prosecution practices, as well as the possible development of prosecutorial guidelines. This news is particularly important as science has shown that people living with HIV who have been on treatment for six months and an undetectable viral load has a negligible risk of transmitting HIV to others, and it is critical that governments, the legal systems and laws to accurately reflect this piece of fact now.
Another progress we have seen in Canada through the advocacy of community groups, Canada, under the leadership of our Federal Health Minister Jane Philpott, has asked Health Canada to make it easier for communities to approve and set up safe injection sites to champion harm reduction to address the needs of people who inject substance. These are just two examples of how structural and legal barriers can be lessened if governments and communities work together through engaging target communities of people living with HIV and key population groups within a Canadian country specific-context.
As community advocacy still remains to be an often overlooked and underfunded area, we encourage the Secretariat to take a lead to work with people living with HIV and key population networks and civil society groups to create a global strategy to enhance and further the capacities of communities to engage in advocacy as we work toward ending AIDS by 2030. As advocacy often do not count as fundable activities and there is a need to ramp up on the amount of funds that flow through to communities, it is thus one of our wish for the Secretariat to take a leadership role and work with affected communities and civil society and member states to create a roadmap and framework to create a pool of funds for communities to engage in advocacy locally, nationally, and globally.
Statement by Stop Aids Alliance
This statement is made on behalf of Stop AIDS Alliance. Thank you Mariangela for the update and for the report of the thematic segment.
Last PCB, Government, civil society and community representatives articulated very clearly the key role of communities to achieve the 90-90-90. Community responses are key component to scale up services, find specific approaches to work in the micro-epidemics within countries and response to the epidemic in key populations. Moreover, community responses are critical to achieve the SDGs, and in particular, the health related targets. For example, achieving Universal Health Coverage will only be possible when programs address all the barriers to effective service coverage; for this, community systems must be well resourced and integrated on the formal health system.
With this statement I want to highlight two points:
First: to move towards the SDGs 3, governments and donors must prioritize the community response in their policies and budgets. This includes a wide range of components: service delivery, research and advocacy among other. The CSS framework of the Global Fund was very important to increase funding for communities. But a UN global framework on community responses for health would leverage more political and financial support to contribute to the 90-90-90 and the SDGs by ensuring donors and governments support communities with specific policies and systems. This would also bring the HIV community experience into other health related problems.
Second: enabling legal environments, decriminalizing KPs and broadening the space for CSO and communities, in particular for KP organisations and networks, is critical to move towards the SDGs. As stated in the high commissioner on human rights report at the 32nd session of the HRC this year: States can create and maintain an enabling environment for civic activity by investing in the development of civil society, taking measures to build participation capacities, especially for marginalized voices, and facilitating access to diverse funding sources and technology. Empowering and strengthening civil society capacities contribute to a protective environment.
We thank the PCB for the past thematic segment; which we found of high importance and urgency. Out final goal is to end aids and leave no one behind, and for this purpose community response must be supported politically, financially and integrated into national systems, policies and budgets.
Agenda 5: UBRAF extended analysis
Joint Statement by CPPN, ICAD and ICASO on UBRAF
Dear Secretariat and member states:
This is a joint statement by the Canadian Positive People Network, the Interagency Coalition on AIDS Development, and ICASO. As a people living with HIV network and organizations which focus on intersectoral partnerships and to enhance global policies on HIV issues, we feel that being accountable to the AIDS response and being accountable all the people living with HIV and key populations affected by HIV mean member states must actively fund and help create a coordinated and sustainable global AIDS response.
As a person living with HIV, it is my belief that both the UNAIDS Secretariat and all the co-sponsors of the joint programme play a vital role in ensuring that our goal to end AIDS by 2030 can be reached. It is also our belief that in order to have a strong and robust HIV response, each of the key multilateral institutions including UNAIDS, the Global Fund, and UNITAID, must work concertedly with networks of people living with HIV and key populations, along with governments to create a more responsive, accountable, transparent and sustainable mechanism that addresses the needs of the communities on the ground.
The interim report on UBRAF contains alarming projections of how the projected financial shortfall will impact the Secretariat and the co-sponsors of the joint-programme, detailing how such gap in resources will negatively impact the global plan to prevent new HIV infections, combat discrimination, and eliminate AIDS related deaths. We fear the contingency plan outlined can only mean the amount of people who will get infected or the number of HIV deaths will increase exponentially.
The proposed UBRAF blueprint represents a significant roll-back from even a business-as-usual approach. The implications of which will be inevitably felt across the world and promises devastating impact on the hard won progress gained in areas of health, human rights and security of people, households, and communities living with and most vulnerable to HIV, especially in this time of increasingly uncertain political environment. In an SDG era where the global community has rallied around the need for an accelerated response, the proposed cuts are worse than taking a ‘business as usual approach’ – it is back-tracking on the fast-track to meeting our SDGs and ending AIDS as a global public health threat by 2030. This is why we urge member states to support a fully-funded UBRAF.
While donors push for greater communication, accountability, transparency, evaluation and reporting from UNAIDS, we the people from communities on the ground would like to note that we wish for the same from our governments. What the community needs is not only a UNAIDS with a strong accountability framework. What we as people living with HIV and key populations groups need is a commitment from governments and donors to hold true to their commitments to the renewed UNAIDS Strategy, the 2016 Political Declaration, the recommendations from the UN High Level Panel on Access to Medicines, and that you listen to our requests as affected communities and civil society to invest in and create a sustainable global AIDS architecture.
We strongly urge the secretariat to ensure people living with HIV, key populations, and members of civil society will be meaningfully engaged and consulted along with the NGO delegation in the independent multi-stakeholder panel to plan for a stronger UNAIDS, to rethink how a coordinated global AIDS architecture would look like, and how each multilateral institution can work better with one another and with communities in an improved global health ecosystem where no one is left behind.
People living with HIV and civil society are asking for a fully-funded, sustainable, comprehensive and coordinated AIDS response and adequate resources be given to communities for engagement. Anything less, in our opinion, would not be true accountability to people living with and affected by HIV today.
Statement by GNP Plus
Thank you for the opportunity to speak today, my name is Coco Jervis and I am the advocacy officer at the Global Network of People Living with HIV. GNP+ is a network of networks and members that engage with people living with HIV regionally and nationally, we channel the voices and needs of people living with HIV on the ground to the global level. GNP+ addresses stigma, discrimination and human rights violations in tandem with advocacy for greater access to comprehensive and integrated treatment, care and support programs and services for all people living with HIV.
We support the efforts and initiatives that the Joint Programme and the its co-sponsors are pursuing to strengthen their accountability and transparency mechanisms. However, over the past few months we have been hearing increased chatter about the possibility of UNAIDS receiving contributions from the Global Fund to support its programs even beyond technical assistance. We are firmly against this approach as we believe that this proposed direction will change the global donor architecture irrevocably by accelerating the existing donor consolidation and divestment trend.
We recognize that the deliberations and decisions about the financing crisis in the Joint Program are difficult, painful and urgent. Make no mistake, we know that divesting in UNAIDS and the Joint Programme in the short-term will directly affect progress towards the fight against HIV in the long-term. As the world backtracks on their commitment to fight HIV, all multilateral and bilateral donors and recipients alike are at a perilous juncture in their ongoing efforts to address HIV.
The outcome of the last Global Fund replenishment is a reflection of how difficult the current resource mobilisation effort can be. Despite the official communication on achieving the replenishment target, in reality, the impact of foreign exchange rates meant that the replenishment was around $800 million short of its target; and the replenishment target itself left a 20% resource gap in reaching the global fast track targets. For this reason, further earmarking donor contributions to the Global Fund to support technical partners operations and programs at UNAIDS or elsewhere will further complicate the already delicate replenishment effort and will reduce direct investments made to countries for life saving treatment care and prevention services.
Additionally, the Global Fund replenishment and funding model was designed to maximize investments to countries and communities. The role of UNAIDS is complementary, yet distinct and crucial – we need a strong and independent UNAIDS to ensure that the investments that are being made by other donors are fully utilized for impact, reach and sustainability – especially for the work of communities. As such, the UNAIDS should and must be funded from separate channels – we must maintain diversification of our investments in our overall global response to HIV in order to ensure our movement’s long term sustainability.
We at GNP+ believe that we are short not on resources but only on political will. This discussion is a reminder for us all about the critical role that civil society can play in demanding less rhetoric and more action by governments and donors – to ensure that they do not backtrack on their commitments for long term, sustainable funding for the AIDS response. To address this, we believe that it is essential for donor governments and bilateral agencies to continue educating the public, increasing awareness of the importance of tackling HIV as a global issue and engaging in public discussions about the importance of investing in the global AIDS response.
Agenda 6: IP Report
Statement by John Rock, APN Plus
It was two years ago that on behalf of the NGO Delegation I presented the NGO report on IP barriers to treatment access to the 35th PCB.
The DPs that were negotiated at length and finally agreed gave hope that some of those barriers would be addressed at least in part.
Now, two years later I have to confess that I am disappointed. While the synthesis report presented at this PCB is a full and comprehensive document, not much progress has been made in addressing the barriers themselves and creating more access.
Notwithstanding various declarations signed by Member States, there are still TRIPS+ clauses being included in Free Trade Agreements. I note that the TPP seems to be destined to failure as a result of the victory of President elect Trump, but many other FTAs under negotiation include TRIPS+ clauses, in particular the Regional Comprehensive Economic Partnership in Asia Pacific. This just has to stop.
There is still much that can be achieved at the country level in taking advantage of TRIPS flexibilities. An example I heard about last night from ITPC is the work recently conducted by MSF and ITPC in addressing IP barriers in some eight countries working through community groups and civil society, and in the case of Argentina alone changes were achieved that will save $20 million a year in ARV prices for a very modest investment of $300,000 for the whole project. Argentina is important as it shows what can be achieved in Middle Income countries where the impact of IP barriers bites hardest. Meanwhile APN+ based in Bangkok does as much as it can with the available funding to assist networks in their own countries on IP access issues through capacity building, advocacy and technical support. With more money we could do much more.
It struck me that there are opportunities to bring together two issues we have discussed in this PCB. IP and Community Funding. There are many advocates and IP experts in community organisations and other CBOs around the world. They should be fully funded and supported to strongly participate in assisting countries to avail themselves of TRIPS flexibilities that are their right under the WTO.
Statement by the Elizabeth Glaser Pediatric AIDS Foundation, Stop AIDS Alliance, and the WCC-Ecumenical Advocacy Alliance
The Elizabeth Glaser Pediatric AIDS Foundation, Stop AIDS Alliance, and the WCC-Ecumenical Advocacy Alliance welcome the UNAIDS synthesis report as well as the report of the High Level Panel on Access to Medicines and their respective sets of recommendations. As the reports note, ensuring access to essential drugs like ARVs is a key component of the rights to health and to life that are protected by international law. We believe these rights and the corresponding duty to protect public health should play a more prominent role in the intellectual property regime.
The 1995 TRIPS agreement placed numerous roadblocks on the path between newly available life-saving ARVs and the vast majority of people who needed them. Over time, the actions of UNAIDS, treatment activists, some governments, and others have succeeded in removing or working around some of these barriers. But it has been a slow, imperfect, and incomplete process, leading to many avoidable deaths. And there remain numerous barriers on the road to universal access to medicines, including ARVs. We therefore call for continued efforts to remove these roadblocks, including in the following four areas:
First, we must improve the ability of low and middle-income states to use all TRIPS flexibilities and to oppose pressure from trading partners to enact TRIPS-plus measures. We also need greater transparency around countries’ implementation of these flexibilities, as well as the TRIPS-plus provisions in bilateral or free trade agreements.
Second, we should aim to increase the scope of voluntary licensing agreements to cover all ARVs and all low and middle-income countries. As the report notes, “by 2020 the majority of people living with HIV will reside in middle-income countries.” But some of those countries, especially upper-middle-income states, are already excluded or may transition out of such licensing agreements, leaving ARVs unaffordable and inaccessible.
Third, we need to heighten transparency around the intellectual property regime, including the true costs of drug research and development and the patent status and prices of existing drugs.
Finally, we support continued investigation of parallel drug research and development systems that are delinked from the size and profitability of the market. Such systems could generate open knowledge innovation for drugs and formulations not being prioritized by private industry, such as pediatric formulations for HIV, TB, and other life-threatening diseases.
In closing, UNAIDS has long been a powerful driver in the access to medicines movement, and we urge the PCB to support its continued involvement on this issue as an integral part of reaching 90-90-90.
Statement by Prosper Ndlovu, South Africa, Wits Reproductive Health and HIV Institute and Youth Ambassador of the International AIDS Society
I am Prosper Ndlovu, I am 21 years old. I come from South Africa, one of the countries with the highest HIV prevalence in the world. In 2005, at the age of 10, I started antiretroviral therapy. I only learned a year later, in 2006, why I was taking the medication. I am a young man living with HIV, you see me here healthy, happy and virally supressed. I am looking forward to my future and have many plans how to support my fellow youth who are living with HIV.
We all know the alarming data for adolescents and young people. In the region that I come from, sub-Saharan Africa, HIV is the leading killer of adolescents. Last year, in my country South Africa, 180,000 people died due to AIDS-related causes.
There are many reasons why adolescents are dying from HIV, but to me, the most important factor is that young people face significant barriers to access HIV services, especially for HIV treatment. We need more adolescent –friendly services that cater to the specific needs of young people. We also need to make sure that HIV treatment is affordable. While we have limited data on ART coverage for adolescents, we know that compared to other age groups, their access to treatment is particularly low. Without access to affordable ARVs, I would not be able to talk here in front of you today.
The price of medicines affects their availability and their availability effects our ability to live, to love, to grow up to become what we want to become.
I want to remind every person and every country in this room and elsewhere that talking about patents and intellectual property rights is not an abstract dialogue. The decisions that you take will keep me, my friends and many hundreds of thousands of young people alive.
If you, decision makers here in the room, do not do everything that is in your power to make HIV treatment affordable and accessible for all the children, adolescents and young people living with HIV today, they will die! Those deaths are avoidable. Those lives are in your hands.
I thank you and I trust you.
Спасибо, уважаемый господин председатель,
Меня зовут Оганес Мадоян (Hovhannes Madoyan)
Я представляю Восточноевропейское и Центральноазиатское объединение ЛЖВ (East Europe and Central Asia union of PLHIV).
Но сейчас я буду говорить от своего имени.
Как юрист, я понимаю, что защита интелектуальной собственности является одной из составных частей экономического развития многих государств и обеспечивает справедливость в распределении благ, хотя чаще всего доходы от лекарств распределяются несправедливо.
Как врач, я понимаю, что есть необходимость в инновационных лекарствах, с меньшим количеством побочных эффектов, большей эффективностью и меньшей вероятностью развития побочных эффектов.
Как человек живущий с ВИЧ я понимаю, что без безопасных и эффективных препаатов мне не жить. Для меня вопрос доступа к лечению равен вопросу самозащиты. Законы всех стран в мире разрешают самозащиту, даже если в рамкох этой самозащиты ты нарушил какие-то правила.
И наконец, как представитель региона Восточной Европы и Центральной Азии, региона где большинство стран имеют средний уровень дохода, хочу сказать, что в нашем случае повышение уровеня доходов стран не иммет прямопропорциональное влияние на уровень бедности, защиту здоровья населения и медицинское обеспечение. Доказательством является то, что наш регион занимает второе место с конца по покрытию АРВ лечением в мире.
Обращаюсь ко всем вам. Особенно к представителям стран, в которых находятся большие фармацевтические компании. Все люди, живущие с ВИЧ, гепатитами и туберкулезом нашего региона нуждаются в вашей поддержке и помощи в обеспечении доступа к безопасному и эффективному лечению. Максимальное смягчение условий защиты интелектуального права по отношению к лекарствам является ключем спасения наших жизней.
Agenda 7: NGO Report
Statement by Joel Goldman, Elizabeth Taylor AIDS Foundation
It is a pleasure to be back at the PCB as part of the NGO constituency. On behalf of the Elizabeth Taylor AIDS Foundation, I am here to respectfully recommend to you the NGO report that is being submitted today.
Up until her passing—nearly 6 years ago–Elizabeth Taylor selected each grant herself. She always funded organizations at the community level as she understood the value in letting community led organizations dictate the needs of each geographic area’s epidemic. She also felt that providing funds directly to the CBO was her way to minimize risk as a funder. Our founder left in place in her Trust document guidelines that ETAF follow her same strategy and commitment to the community led response.
It is very important that private funders coordinate with one another to be more effective–maximizing our effectiveness to help those we serve. We must always listen to the community led organizations on the ground—especially if we work outside our own geographic location. Local organizations know their cultures and will know how to adapt a successful intervention to fit their community.
In these uncertain times, we believe that foundations working alongside community led organizations must step up their game. In many cases, financial resources are already stretched, but one of the key elements of this report is the recommendation of collaboration amongst funders, NGO’s and grassroots organizations.
Even in the earliest days of AIDS, our founder, Elizabeth Taylor, saw the value in collaboration over owning the spotlight. In 1985, she and Dr. Michael Gottlieb co-founded an AIDS research foundation using Rock Hudson’s book advance as the seed money—but they decided to merge with Dr. Mathilde Krim’s research foundation as a better way to serve the global AIDS community through collaboration. Today we know that organization–as AMFAR.
I am not urging all foundations to merge together – – but in several US cities we have seen 6 or 7 CBO’s in a particular geographic area come together under one roof to share a structure, costs, and avoid duplication of services in a community. The driver of this action was responding to client voices who were criss-crossing a city to obtain HIV and wrap-around services. As a nimble funder, ETAF has been able to support these community led actions to come together.
In the legacy era of The Elizabeth Taylor AIDS Foundation, partnership has become our mantra of how we can be more impactful at the community level by coming together with partners. I will close with these/this example.
1). For three years we have partnered with The Elton John AIDS Foundation in the US to make larger more effective grants to community led organizations focusing on young black MSM in the US SOUTH. Pooling our joint funds has streamlined grant application process and has allowed us to make larger grants to CBO’s.
2) Last year in London we announced our plan to build a coalition to achieve 90–90-90 in Malawi’s Mulanje district where we have 7 GAIA Elizabeth Taylor Mobile Health Clinics. In coordination with the District Health Office, our clinics move daily so that each of the 770,000 residents in Mulanje are within an hour’s walk to free healthcare. Though we treat for all kinds of illnesses, our core purpose is to get everyone tested for HIV and linked to treatment. On this past World AIDS Day our organization and PEPFAR announced a $4 million partnership focusing on the final piece of our goal: getting men tested and into treatment. Focusing on the last piece DOES NOT mean that we have abandoned our programs focusing on women, girls, and adolescents. The coalition that we have built thus far includes the Global AIDS Interfaith Alliance, One Community through Johns Hopkins, Grassroot Soccer, Mothers to Mothers, and naturally the District Health Office. We are working in concert together to lift the 90-90-90 strategy off the pages, and prove that if you can achieve it here in this remote and rural area, it can be achieved anywhere! We have listened to the village chiefs and faith based leaders who tell us that to get everyone tested and achieve the first 90, we must reduce stigma. Thus we have have worked with those local leaders and the DHO to create community integrated and led programs that are turning stigma on its head. An example our door-to-door testing program has only a 2% refusal to test rate making testing for HIV to be the norm in the village.
The NGO report clearly says we must listen to the CBO’s and that funders need to build coordinated coalitions and work together–more than ever—in order for us to achieve the AIDS FREE generation that’s within our grasp. Please support this and please join us! To quote Elizabeth Taylor “if you do your part with all of your heart, and I do my part with all of my heart, we will make a God damn difference!”
Statement by Lee Waldorf, The Stephen Lewis Foundation
Good afternoon everyone.
My name is Lee Waldorf, and I’m Director of Policy at the Stephen Lewis Foundation, based in Toronto, Canada. The Foundation has been funding community-based organizations working to turn the tide of AIDS in eastern and southern Africa since 2003.
We’d like to commend the NGO Committee for producing this invaluable report, which absolutely reflects the funding challenges and concerns that our more than 300 community-based partners have expressed to us over the years – challenges and concerns which are now becoming more even more pronounced.
It’s been encouraging to see the greater recognition that the global HIV&AIDS response community has recently been giving to the work of CBOs. But also troubling. Because strengthening the critical work that’s taking place at community level will require more than a well-intentioned surge of recognition and good will. There are very real difficulties – obstacles built into the practicalities of current funding methodologies – that could prevent any further progress.
The NGO report makes a series of very sensible and realistic proposals for change, which could be implemented in relatively short order to improve the situation. I’d like to underline the importance, in particular, of Draft Decisions Points 83 a) and 83 b), which are directed to UNAIDS. The first step has to be a greater understanding of the financial constraints community based organizations are working under, and UNAIDS is ideally suited to help generate and surface this analysis for the benefit of all.
One of the biggest problems we have right now is the common misperception that community based organizations remain underfunded because of their own, supposed, capacity gaps. The truth is probably closer to the reverse – that it’s the funders who need to be asking whether they have the right capacity to support CBOs, and whether it’s time for them to start making changes. More clarity, and fewer assumptions, about the actual challenges CBOs confront when trying to access funds would be a huge step forward.