Investing to End AIDS: Advocates in Their Own Words

Since our last update in September, the UNAIDS Programme Coordinating Board approved the new UNAIDS Strategy 2016-2021 calling for strong action to reach prevention, treatment and human rights targets by 2020 and USD 31 billion in funding annually by 2020 to achieve the targets. At the same time there is evidence of flat lining in donor financing for the AIDS response and worrying new signals from several donor governments.

How will we get the financing needed to make treatment accessible to all people living with HIV who want it, scale up HIV prevention, and advance on human rights?

Below are the perspectives of five advocates working in donor and implementing countries.

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Maurine Murenga: People Focused Investments, Ensuring No One Is Left Behind

Maurine Murenga
Maurine Murenga

Maurine Murenga has openly been living with HIV since the early 2000s. At that time, there was little access to treatment in Kenya and a lot of stigma around the disease. In 2002, Maurine was expecting her first child, but could not access PMTCT services; her son, Earl Fortune, contracted HIV from her at birth. Maurine and her son, now age 12, were able to begin free treatment in 2003 when the Global Fund came to Kenya and Maurine has since had another baby in 2013 who is HIV-free. Through her lived experience, Maurine saw the inequalities and vulnerabilities young women and adolescent girls living with HIV experience. In 2008, Maurine founded the Lean on Me Foundation, an organization that provides comprehensive care and support to adolescent girls and young women living with HIV and affected by TB in Kenya. Maurine was a Global Fund Advocates Network "Here I Am" campaign ambassador from 2012-2013. She won the "Unsung Hero Award" from the US Embassy in Kenya and "East Africa Community Service Award" From Fadhili Trust. Now she works as the Global Fund Coordinator for the International Community of Women Living with HIV (ICW Global) and is a member of Gender Technical Committee on HIV and AIDS in Kenya, Women4GF and the Communities Delegation to the Global Fund Board.

What is your sense of the AIDS funding landscape today, among donor countries and/or implementing countries?

Donor countries are either maintaining a status quo or reducing AIDS funding. This is unfortunately coming at a time when evidence shows that increasing investments for the AIDS response will not only accelerate saving of lives but also end the AIDS epidemic.

Implementing countries have shown an increase in domestic financing mainly because it's part of requirements by some donors like the Global Fund to Fight AIDS, TB and Malaria. Those that still provide funds focus on clinical interventions forgetting that we have reached where we are due to engagement of communities and civil society and we cannot reach the end without these populations.

What are the biggest challenges in making the case for increased funding for the AIDS response?

The biggest challenge is in middle-income countries. Most donors have policies that do not allow funding for middle-income countries, yet evidence shows that the disease burden is in middle-income countries and especially countries where key affected populations are criminalized.

There is need for focus to be on populations and not on country income classifications. Another challenge is seeking funding for gender and human rights. It takes a while to measure impact and therefore investing in activities to address these issues is not attractive.

What are some messages you use to make the case for investing in the AIDS response?

We now have evidence that if we scale up investment in the AIDS response we are not only going to be able to save more lives but there is a possibility of ending the epidemic by 2030. If we don't invest more now then the cost of inaction will be too high.

What are some ways that advocates can work together to get these messages out?

Advocates in donor countries need to lobby for an increase in AIDS investment and the need for people-focused investments, ensuring no one is left behind. Those in implementing countries should still keep asking for increased domestic financing.

Khalil Elouardighi: Remind Donors We Want a Fairer, More Stable, Safer World for All

Khalil Elouardighi
Khalil Elouardighi

Khalil Elouardighi is an AIDS activist currently heading the Advocacy Program at Coalition PLUS, a coalition of francophone community-based HIV organizations in 13 countries. Based in Paris, Khalil started engaging in advocacy for universal access to HIV treatment in 1998, as part of the French Community Advisory Board. From 1999 to 2008 he worked for Act Up-Paris on global treatment access (many years as a volunteer), and in 2008 he joined the newly formed Coalition PLUS. Among activist victories that he played a part in are winning the WTO Declaration on access to generic medicines; making HIV treatment a priority of the Global Fund and UNITAID; and launching a tax on financial transactions as a potential source to fund universal access. Khalil served as Board member of UNITAID for 3 years, and as delegate to the Global Fund Board for 7 years. He is currently working on a multi-country campaign to expand access to generic hepatitis C drugs, with HIV/HCV co-infection in mind.

What is your sense of the AIDS funding landscape today, among donor countries and/or implementing countries?

Many donor countries are experiencing a drop in solidarity both internal and international, which is pressuring AIDS aid downwards. The solidarity drop is largely linked to the de-leveraging that ensued since the 90's and the financial bubble burst in 2007. In mainland Europe, the simultaneity of the social spending cuts and the refugee crisis is making it very hard to position ending AIDS as a high priority.

In developing countries there seem to be more opportunities, as in many countries governments' budgets are increasing, thanks to significant economic growth. However making health a priority of government spending, and AIDS a priority of health spending, is difficult in many countries and takes time.

What are the biggest challenges in making the case for increased funding for the AIDS response?

Everyone agrees that doubling the number of people on ART by 2020 (to achieve the 90/90/90 target) will require more money, but everyone seems to want everyone else to do the increasing. That's the case in France, for instance. Also, the devastating costs letting AIDS balloon in some developing countries is seen as not being a cost to developed countries themselves.

As for national funding for AIDS, it often touches on issues related to healthcare reform -- reform of how healthcare is funded, how the healthcare system is managed, etc. Those are hot-button issues that take years to address. Most governments are too short-termist to want to want to touch them.

What are some messages you use to make the case for investing in the AIDS response?

We try to remind politicians that voters do want a fairer, stabler, safer world for all -- and that reducing inequities in the face of deadly diseases is a big part of that. Also the strength of the mobilization of the global AIDS movement -- we collectively, by our commitment and action, have achieved wonders that no one thought possible. We've got the results to show for it. That's another reason why decision-makers should invest in the AIDS fight.

What are some ways that advocates can work together to get these messages out?

The first thing is to not give up hope -- just because politicians are saying "no way" doesn't mean we should listen to them, or stop demanding what we need. We must continue asking. Also, UNAIDS should find us a champion, a global public figure whom we can rely on, who'd be willing to give us (i.e. the global AIDS movement) several days of their time every year. Perhaps a pop star, à la Rihanna?

Rodelyn "RD" Marte: Keeping Governments and Donors Accountable to Their Commitments

Rodelyn 'RD' Marte
Rodelyn "RD" Marte

Rodelyn "RD" Marte is a Filipino lesbian feminist activist with a passion for human rights, sexual rights, and social justice issues. She has programme implementation experience on HIV, health financing, and women's health and rights advocacy in the Asia-Pacific region, including in Bangladesh, Cambodia, China, India, Indonesia, Lao PDR, Nepal, Pakistan, Papua New Guinea, Philippines and Vietnam. RD currently serves as the Executive Director of APCASO, a regional network working towards just and inclusive societies that respect, fulfil and advance the rights of communities most in need. She is also: the Chair of the Global Fund Advocates Network Asia-Pacific; a member of the Steering Committee of Women for Global Fund; and a member of the Core Group of the Inter-agency Task Team on Women, HIV and Human Rights which is co-hosted by UNAIDS RST Asia Pacific.

What is your sense of the AIDS funding landscape today, among donor countries and/or implementing countries?

Ending AIDS remains an unfinished agenda. While we should celebrate gains achieved over the years in terms of advances in science and medicine, significantly lower rates of infection and decrease in number of AIDS-related deaths, the global HIV community -- activists, governments, donors, should not be lulled into believing that we are okay. We have the opportunity of ending AIDS in this lifetime but to make that happen we need sustained political will to invest the right amount in the right interventions with the right communities in the right locations in the right way (human rights-based, gender-transformative, and with the meaningful engagement of people living with and affected by HIV).

It will take increases in both domestic and donor funding to adequately respond to the world's HIV resource needs. In Asia-Pacific, while there is a reported significant increase in levels of domestic financing of HIV responses, this does not mean the region meeting the HIV resource gap adequately. Neither does this mean that HIV investments are allocated strategically or efficiently. This makes the civil society and community activism in the area of HIV financing -- seeking government and donor accountability -- very relevant and critical.

What are the biggest challenges in making the case for increased funding for the AIDS response?

From being one of the eight Millennium Development Goals, ending AIDS (together with tuberculosis, malaria and other tropical diseases, lumped together with combating hepatitis, and waterborne other communicable diseases) is now just one of the 169 targets out of 17 Sustainable Development Goals (SDGs).

A key challenge is keeping governments and donors accountable to their political commitments to HIV amidst this more crowded space of global agendas. We need to remind duty-bearers that HIV responses that are sufficiently funded are integral to health, human rights, and the overall achievement of the SDGs. The Asia-Pacific region has a number of countries transitioning into middle income status thereby posing barriers to accessing donor funding. At the same time, the HIV epidemic in our region is concentrated among communities that are often marginalized and criminalized, i.e., men who have sex with men, transgender people, people who use drugs, and sex workers. These key populations also often belong to economically disadvantaged populations even within wealthier countries. For the region's response to ever be effective, plans including for countries transitioning from external to domestic HIV financing, need to include these communities and not leave them behind.

What are some messages you use to make the case for investing in the AIDS response?

APCASO, as a key HIV financing advocacy organization in the Asia-Pacific region, has been calling for:

  • Ensuring meaningful participation of key populations and communities in decision-making processes related to HIV financing. Resources for communities, including support for core operations, advocacy and representation need to be scaled up.
  • Increasing domestic allocations to financing comprehensive HIV prevention, treatment, care and support to ensure the sustainability of the HIV response.
  • Fund human rights, gender equality, community mobilization, and advocacy are key components in the HIV response. The international donor community needs to fill in gaps where governments are refusing to take this up.

The Global Fund is the leading multi-lateral funding mechanism for HIV, TB and malaria. As part of the Global Fund Advocates Network Asia-Pacific (GFAN AP), APCASO has also been calling for a Global Fund that:

  • is truly global -- one that does not leave key populations and vulnerable communities behind, regardless of the income classification of their country.
  • places the health and lives of people ahead of profits -- one that ensures people's access to medicines and diagnostics, regardless of their ability to pay.
  • continues to invest towards the advancement of human rights and gender equality for all.
  • acknowledges and builds upon the strengths and contributions of communities and civil society in combatting the three diseases.

What are some ways that advocates can work together to get these messages out?

These messages need to get out at every opportunity -- in our own engagements with other community and civil society groups, or with governments, and development partners. Collectively, there are community and civil society-led HIV financing initiatives and platforms that advocates may join and support including APCASO, GFAN Asia-Pacific, and Women for Global Fund. The role of civil society and communities -- questioning the status quo, seeking accountability from state and non-state actors, demanding change -- is critical to ending AIDS.

Matthew Kavanagh: Time for New Investments to Enable Scale Up

Matthew Kavanagh
Matthew Kavanagh

Matthew Kavanagh is an activist, researcher, and policy wonk who has worked with a variety of AIDS, health and human rights groups in the US and Southern Africa. He is the Senior Policy Analyst for Health GAP (Global Access Project), where he leads the organization's work on PEPFAR monitoring and accountability and supports work on access to medicines and US government policy. He has played a key role in winning increased funding for PEPFAR and the Global Fund, helping halt harmful US-backed trade agreements with Thailand and Southern Africa, and led a campaign that secured U.S. government support for 2 million additional people on ARV treatment as of 2013. He is also currently a fellow at the University of Pennsylvania's political science and health economics institutes, where he is working on a research project on the intersection of constitutional law and access to medicines/health services.

What is your sense of the AIDS funding landscape today, among donor countries and/or implementing countries?

There has been huge progress in getting political leaders to commit to ending the AIDS crisis -- using the pretty amazing tools we have today to break the back of the pandemic. But now perhaps the single biggest threat to progress is funding. Donors have flat-lined their financial support, including the US under Obama, despite the amazing opportunities and political pledges. National governments are stepping up, but not fast enough -- and for many there's no way they can afford the kind of scale up and speed needed to halt HIV. And as funding runs short many of the most important organizations in the global fight -- the civil society groups holding governments and programs accountable -- are facing crises. After the last five years of wringing scale up out of limited envelopes, we need to do away with the saying "do more with less" -- and my hope is that with many major economies now growing we can turn our attention to sufficient funding to turn the rhetoric into scale up.

What are the biggest challenges in making the case for increased funding for the AIDS response?

One element is the serious decline in advocacy support -- organizations and funders are shifting priorities, which means fewer groups are doing the heavy lifting to ensure governments commit to resourcing the AIDS fight. The other real challenge is a sad irony that, having wrung rapid scale up out of existing funds in recent years, there's some magical thinking going on that this can continue indefinitely. It cannot. And if we don't invest now in turning the flat-line into an upward trajectory the AIDS response is going to run headlong into a resource wall and the virus will rebound, as we're already seeing in some communities.

What are some messages you use to make the case for investing in the AIDS response?

The twin realities of incredible opportunity with serious threat of reversal is, I think, important. The medical science is truly fantastic -- HPTN052 and ART for prevention, START and early ART to prevent death and sickness, studies on PrEP, medical male circumcision, and the vital role of community-based responses, especially for marginalized populations. All of this adds up to a huge opportunity for impact. The very good news is that the AIDS crisis does not require never ending financial commitments. In the medium term, investments now allow us to spend less later. "Pay now or pay forever" is pretty accurate. But it does require rapid scale up now, in technologies that we have today, to ensure that access is truly universal. But without that commitment to scale up then we will see a reversal. That's how infectious diseases work, and if we don't get ahead of the curve there is every evidence that untreated HIV will again overwhelm the response.

What are some ways that advocates can work together to get these messages out?

I'm deeply worried at how few advocates there are who are working full time at making governments do more and better -- pushing for investment, better use of funds, and holding donors, governments, and implementers accountable. We need to do more together. In the coming months we'll have some important opportunities -- the Durban conference will bring all eyes back to South Africa, where the global HIV treatment movement got one of its early starts. The High-Level Meeting in New York in June will provide another opportunity to put pressure on governments. And throughout the year there are a number of new opportunities for advocacy -- including the newly opened PEPFAR Country Operational Planning process, which is showing some early signs of being a major chance for civil society to work trans-nationally to shift funding in important ways toward community priorities.

Mike Podmore: A Renewed Push for Investment and Innovative Financing

Mike Podmore
Mike Podmore

Mike Podmore is an advocacy and coalition specialist who has been working in the field of HIV, health, gender and human rights for 13 years. He is currently the Director of STOPAIDS, the network of 66 UK international development agencies working to secure an effective global response to HIV and AIDS. Before that he was Policy Manager at the International HIV/AIDS Alliance for 4 and a half years and worked on HIV, gender and education at VSO (Voluntary Service Overseas) for 9 years. In all these roles he played an active role in coalition advocacy and management -- as a trustee of Jubilee Debt Campaign; as co-convenor of Action for Global Health (AFGH) in the UK; as a steering committee member of AFGH EU; as a trustee and chair of STOPAIDS; and as co-founder and co-facilitator of the Caregivers Action Network. Mike has an MSc in Development Studies from The School of Oriental and African Studies, University of London and lives in London.

What is your sense of AIDS landscape today, among donor countries and/or implementing countries?

To get on the five-year Fast Track we need to increase from $19 to $31 billion a year by 2020. To get there we will need to draw on increases in donor funding, domestic resources, innovative financing and find greater efficiencies in the response. Donor funding for the global HIV response seems to be flat-lining and without a renewed push, funding levels may stagnate or decline. Donors will need to make one more push of investment to reap the rewards of cost-saving in the future. Implementing countries will need to continue the trend of increasing their domestic resources for their HIV responses. We will need new, innovative sources of financing too -- like the Financial Transaction Tax that will soon deliver funds for international development. And we will need greater efficiencies and cost-savings in the response -- like reforming the R&D system and bringing down the cost of medicines.

Apart from the need for the overall increase in HIV funding to get on the Fast Track -- the two issues that are concerning me are:

  • The trend of bilateral donors to pull funding out from middle-income countries (MICs), often too quickly without ensuring sustainability of programmes. They are doing so based on blunt criteria of Gross National Income (GNI) and disease burden and the picture they paint doesn't reflect the HIV funding realities in many of these countries. Some donors are pulling out bilaterally and using their position on the board of the Global Fund to make it pull out funding from MICs too. The greatest danger is that key populations in MICs are left high and dry without services, epidemics will resurge and our investment to date will be lost.
  • Linked to this is the very low investment in HIV advocacy. Funding for civil society to engage in HIV advocacy will be increasingly critical to ensure that there are sufficient resources for HIV; that they go to who and where they are needed; and that political, social and legal barriers to access are reduced. Currently only a tiny percentage of global HIV resources are spent supporting advocacy.

What are the biggest challenges in making the case for increased funding for the AIDS response?

Over the last few years, other development priorities have already started to take precedence over HIV and there has been a growing sense of HIV-fatigue in the global international development community. The SDG process, though good, has helped to cement this through the de-prioritisation of HIV from a goal to one of 169 targets. The question some donors now ask is: Why prioritise the HIV target above all the other SDG targets we now have to think about? It's no longer enough to make the case solely for the end of one of the worst epidemics the world has ever seen. Now, perhaps rightly, we also have to demonstrate how ending AIDS as a public health threat will deliver for other SDG priorities.

What are some messages you use to make the case for investing in the AIDS response?

  1. We have made amazing progress in the AIDS response since 2000. If you want to see what ambition and good investment can get you, look at what we have achieved in the HIV response. (e.g. 15x15, 35% reduction in infections since 2000).
  2. Talk of the End of AIDS has been misunderstood -- AIDS is still one of the greatest global killers -- #1 killer of women of reproductive age, #2 killer of adolescents globally.
  3. There is still much to do but the global community has done its sums and looked at the evidence and we are clear that it is possible to end AIDS as a public health threat by 2030.
  4. It's possible because: a) science has progressed hugely and we now have the tools we need; and b) we have the global architecture to do it -- global targets, accountability framework, Global Fund, agreed UNAIDS strategy.
  5. To get there we have to:
    1. Fight "business as usual" -- start a new HIV activism and get all stakeholders involved to reach the finish line.
    2. Increase global funds to 2020 to get on the Fast Track.
    3. Focus on what works, where it is needed and with which people. This will mean tackling social, political and legal barriers to reaching the most affected.

What are some ways that advocates can work together to get these messages out?

  • HIV activists must work together across the key donor countries to help share messages and strategies for making the case and collectively push donor countries who are not yet contributing what they could be.
  • Activists in donor countries must also provide a platform for activists and those most affected, particularly in low and middle-income countries, to demonstrate what is needed and how they are holding their own governments to account.
  • Here in the UK we are building stronger bridges and partnerships between the global HIV sector and the domestic HIV sector. The SDGs embody the fact that this is a universal HIV response with many of the same issues here in the UK that we see in low and middle-income countries.
  • We must build a renewed public HIV activism here in the UK -- many people in this country have not heard about HIV for a long time and we will only consign the AIDS pandemic to the history books if we can mobilise young and old around the exciting goal of ending AIDS.