Ruben Pages, Joint United Nations Programme on HIV/AIDS (UNAIDS)
Rico Gustav, Global Network of People Living with HIV (GNP+)
Neil McCulloch, Global Network of Sex Work Projects (NSWP)
George Ayala, MPact Global Action for Gay Men’s Health and Rights (MPact)
Judy Chang, International Network of People who Use Drugs (INPUD)
Julian Kerboghossian, Global Network of Young People Living with HIV (Y+)
Lillian Mworeko, International Community of Women Living with HIV Eastern Africa (ICWEA)
Mohammed Barry, The PACT
Ruth Morgan Thomas, Global Network of Sex Work Projects (NSWP)
Elani Nassif, Joint United Nations Programme on HIV/AIDS (UNAIDS)
Laurel Sprague, Joint United Nations Programme on HIV/AIDS (UNAIDS)
Universal Health Coverage (UHC) means that “all individuals and communities receive the health services they need without suffering financial hardship. It includes the full spectrum of essential, quality health services, from health promotion to prevention, treatment, rehabilitation, and palliative care.” This year in September, Member States will adopt a resolution on UHC at a High-Level Meeting scheduled for the 74th United Nations General Assembly. The output of this meeting will be a Political Declaration that is “concise and action-oriented” and may well define how Member States will fulfill the Sustainable Development Goals (SDGs) related to health, monitor their progress and hold each other accountable.
The background of Universal Health Coverage can be traced back to the International Conference on Primary Health Care in 1978. The outcome document, the Declaration of Alma-Ata, urged governments to protect and promote the health of all peoples, everywhere, as enshrined in the Universal Declaration of Human Rights.
More than 40 years later, and through persistent multilateral diplomacy and negotiation, political commitment, and concerted advocacy and community engagement, it is unquestionable that the world has made substantive progress in attaining higher standards of health and wellbeing. This progress extends notably to success in responding to HIV – success driven by people living with and most affected by HIV reclaiming their right to health. Globally, new HIV infections are decreasing. Last year, the total number of deaths because of AIDS reached their lowest point this century, falling below one million a year, and more people are now on HIV treatment than ever before.
The upcoming High-Level Meeting on UHC, and its anticipated Political Declaration, could potentially reinforce the health response, locking in world leaders’ definitive commitment to end AIDS by 2030 and respect, protect and promote people’s right to health.
This presents several key opportunities for people living with HIV and those from communities most left behind to shape the health systems that we will have for generations to come. Their skills and expertise, developed over years of activism in the HIV response and in efforts for racial and economic justice, as well as for the human rights of lesbian, gay, bisexual, transgender and intersex (LGBTI) people, sex workers, and people who use drugs, will be central to ensuring that health responses going forward are truly inclusive.
Opportunity 1: UHC at its best, with integration of HIV services, could offer the possibility of integrated services that recognize the whole health of people living with HIV and key populations. At its center, UHC should ensure the availability of fully resourced community-led service delivery and of fully resourced public facilities that do not discriminate and do provide the opportunity for our multiple health needs to be addressed in one place. UHC provides the opportunity for real integration of HIV, TB, HIV prevention and other health needs, particularly sexual and reproductive health and rights and services to respond to gender-based violence, including for those of us who are aging, for mental health care, care for NCDs, and nutrition support. This could go hand-in-hand with greater availability and accessibility of affordable, quality medicines and vaccines through the flexibilization of intellectual property licenses and the use of generics when available in applicable markets.
Opportunity 2: UHC at its best could provide a pathway to ensuring the right to health for people who are criminalized and often denied their rights, and those who are denied legal recognition and documentation, including people in detention, transgender people, sex workers, people who use drugs, gay men and lesbians, and migrants. This presents the possibility of reviewing and repealing laws and policies that violate human rights, as UHC will never become a reality for all without equal access to opportunity and protection from violence, discrimination and stigma.
However, we cannot forget that these discussions are taking place against a backdrop of growing cultural conservatism in an ever-more politically polarized world, in addition to the backlash against multilateralism and the United Nations, and persistent attempts to discredit the value of community-based responses and civic engagement. This is compounded by the continued criminalization and stigmatization of communities of people living with and affected by HIV. Without the political will to ensure that HIV remains a priority in UHC, these communities could see shrinking foreign and domestic financing for essential services.
We have therefore identified five critical risks to the upcoming Political Declaration on UHC, outlined below, which could negatively impact the human rights, health and dignity of the most marginalized populations in the context of HIV, including people living with HIV, gay men, transgender people, young people and adolescents, prisoners and other incarcerated populations, migrants, people with disabilities, people who use drugs and sex workers, women and girls. Alongside each risk, we propose an advocacy message as a response and provide supporting evidence.
Risk No. 1 – Framing health alternately as a privilege or a commodity, rather than a right.
The HIV epidemic and its response have shown that tackling a disease is not just about a minimum package, pills, tests and condoms, but an issue of social justice and the realization of the right to health. Profit-driven approaches to the provision of services and medicines undermine this right by perpetuating inequality and framing health as a privilege for those who can afford to pay for it. Will the Political Declaration on UHC reaffirm the duty that all Member States have to respect, protect and promote all people’s right to health, or merely focus on strengthening health systems only as resources become available and national capacity is bolstered, primarily for those who are able to pay?
Advocacy Response – Health is a human right for all and must remain people-centered.
Global health would cost only 271$ per person, which is just 58$ more per person than is already being spent on health. Yet, in 106 countries, poverty is 0.65% higher because people have to pay out of their own pocket for health care. In most countries, nearly 30% of spending on health is out of pocket; in low-income countries, it is higher. More than 45% of health expenditures globally are out of pocket. Many people simply can’t afford it. Every year, 100 million people become poor because they had to pay for their health costs out of their own pocket. They join the 767 million people who are living in extreme poverty, whose pockets are already empty. Half of those in extreme poverty, some 385 million people, are children. When the health outcomes of more than 1.7 million patients were tracked over 13 years, participants aged 40–85 years with lower socioeconomic status had approximately 40% higher premature mortality and died on average two years earlier than those with higher socioeconomic status.
Lessons learned from the AIDS response demonstrate that investing in health yields high returns. For instance, investments in AIDS have significantly increased life expectancy for those at the most productive age, not only improving quality of life but also regenerating human capital – a prerequisite for prosperous and stable societies. As AIDS mortality goes down, economic growth goes up: reductions in mortality account for about 11% of recent economic growth in low-income and middle-income countries as measured in their national income accounts.
Risk No. 2 – Those who were left behind will stay behind.
UHC aims to achieve broad inclusion so that nobody incurs catastrophic expenditures in the process of accessing the health services they need. Yet, even if this goal is realized, other limitations exist before people can realize the highest attainable standard of health. The 2030 Agenda reminds us that the only way to ensure that no one is left behind is to begin by reaching those furthest behind first. Will the Political Declaration call on Member States to decriminalize marginalized populations and tackle harmful norms, punitive policies and practices as well as the legal and structural barriers that many of them have to overcome to access services, including but not limited to parental, age and spousal consent; criminalization of same-sex sexual behavior, sex work and drug use; the lack of recognition of sexual orientation and gender identities; sexual harassment, violence and stigma and discrimination?
Advocacy Response – Put the last mile first. If UHC can reach those furthest behind, it will reach everyone.
Even with its singular focus of effort and resources, and accompanying successes, the HIV response has continued to fail too many people, including gay and bisexual men, people who use drugs, sex workers, and transgender people. Further, children with HIV are left far behind adults and adolescents with HIV, especially girls and adolescents from key populations, are too often left to struggle through health systems, stigma, adherence, and medication side effects on their own.
Criminalization of same-sex sexual relationships, sex work, drug use or even condom and needle/syringe possession prevents key populations from accessing HIV prevention services. For example, two thirds of countries in which HIV prevention is a priority allow prosecution for carrying condoms. Key populations account for 40% of all new HIV infections and are not being reached with prevention services. The risk of acquiring HIV by key populations is 13% to 28% higher than for those who do not belong to key populations. This is the direct result of the lack of safe and equitable access to health care.
In addition, where countries implement UHC through provision of health insurance cards to residents, these should be delivered to everyone regardless of their age, gender and gender identity, sexual orientation, and profession. Putting the last mile first must translate into ensuring that a sex worker, or an adolescent gay man, and every other marginalized group, can access health services. These cards will not lead to UHC if they are delivered based on geographic location or delivered to a family.
Children are getting a raw deal. Although 1.4 million new HIV infections among children have been averted since 2010, an unacceptable 180 000 children acquired HIV during childbirth or breastfeeding in 2017. Nearly half of all children living with HIV are not getting treatment. The world is far short of the target for children on treatment. In 2017,110 000 children died of AIDS-related illnesses.
Risk No. 3 – The health response will be no place for communities.
The involvement of the community in any health response is critical to ensuring that programmes are more effective, efficient, acceptable, capable of reaching those hardest to reach and more equipped to respond to humanitarian crises and other emergencies. Will the Political Declaration make an unambiguous commitment that communities, including key populations and other vulnerable and marginalized groups, will be engaged meaningfully in national heath responses, including where UHC health ‘care packages’ are decided upon? Given that key populations and other vulnerable and marginalized groups are often still not invited to the table or even recognized as interest groups in some countries, will Member States promote their meaningful inclusion throughout the national health response, including for advocacy for better policies, while providing the necessary technical and financial resources that they need? Moreover, in their quest to provide universal coverage, will Member States outsource to the private sector their obligation to provide for the people’s health, jeopardizing the public sector’s funding and the health response’s quality standards?
Advocacy Response – Communities are vital to a successful and sustainable health response.
Community engagement leads to greater access to treatment and prevention. For instance, in Nigeria it led to a 64% increase in the likelihood of treatment access and a twofold increase in the likelihood of using prevention services. In Kenya, it led to a fourfold increase in consistent condom use over the past 12 months. Community systems also ensure that funds reach grass-roots programmes through on-granting to smaller effective organizations and provide back up and support to expand capacity. The resourcefulness of communities in obtaining funding has often translated into the ability to stretch modest budgets to fulfil a range of needs that not only provides value for money, but also added value for donors and governments. Community-based organizations also mobilize more resources where they are more highly concentrated (data per 100 000 inhabitants). For instance, in Kenya community-based organizations mobilized 21400$ per organization in higher concentration settings, versus 7500$ per organization in lower concentration settings. In Nigeria, this was 22500$ in higher concentration settings versus 6200$ in lower concentration settings.
Risk No. 4 – Communities will lose their hard-won place at decision-making tables for health.
Systems for health are at a critical juncture when it comes to community engagement in decision-making. The success of the HIV response in creating formal systems of participation in decision-making by people living with and most affected by HIV could be a model to expand; instead, spaces for participation are disappearing. The country coordinating mechanisms of the Global Fund, with seats for people living with HIV, TB, and Malaria, will go away as the Global Fund exits when countries achieve a higher economic status. At the same time, National AIDS Commissions with dedicated seats for community constituents are being dissolved in country after country. Will the Political Declaration promote governance processes that ensure that networks of people living with health conditions who would otherwise be left behind have an equal place at the table?
Advocacy Response – Institutionalize formal spaces for communities to meaningfully engage in decision-making for a truly inclusive health response.
Community-based advocacy, campaigning and participation in accountability have changed the landscape of the AIDS response worldwide, and they continue to deliver key changes that enhance the well-being of individuals and their communities. They demonstrate examples of the innovative efforts of communities to negotiate the complex social and political landscapes that define the AIDS response. Community-based advocacy and campaigning have: mobilized millions of individuals; influenced policies and laws; improved access to treatment, care, support, HIV testing and other services; challenged stigma and addressed discrimination; enhanced prevention interventions; and created more enabling environments. These changes have in turn supported the achievement of better health outcomes and human rights.
Risk No. 5 – Nobody will be accountable.
How will Member States be held accountable for their commitments on everyone’s right to health? Civil society space for participation is shrinking. For example, a recently launched UNAIDS report on youth and HIV showed data suggesting that “while young people participate in the development, consultation, validation or review of strategic documents that guide the HIV response at the country level, they participate much less frequently in spaces where decisions are made about the policy framework or resources invested in the HIV response. Further efforts are needed to ensure the development of emerging youth leadership and that youth receive the necessary tools and opportunities to participate in spaces where implementation and policy direction are decided.”
Advocacy Response – We need a solid accountability framework to accompany the Political Declaration that allows people to monitor their governments’ commitments and hold stakeholders at all levels to account for ensuring that health is a right and reality for all.
In addition to playing an essential role in holding governments to account for their commitments, communities are best placed to lead on collecting the valuable monitoring data that governments need. One example of sex worker-led research within communities spanning across 20 countries revealed stock-outs of essential medicines, antiretroviral drugs (ARVs), condoms and lubricants, diagnostics for STIs and HIV and HIV viral load testing. Not only did this highlight the various vulnerabilities that this created, but it also helped to identify the underlying causes, such as funding and procurement gaps.
There is a vital need for community-based research in order to better understand the programmes and services that are in place and to assess the impact of investment in these programmes. In addition, more community-based research is needed to understand essential rights and needs of communities, and to understand the drivers of the vulnerabilities that they face. Where community-based and community-led research has been supported, it has resulted in crucial and insightful evidence for communities, policy-makers and programme planners. Effective community-based research can drive successful advocacy campaigns, change the shape of programmes and policies, and ensure investment in the services and activities that will have the greatest impact.
As the negotiations leading up to and during the High-Level Meeting on UHC evolve, the answers to these questions will shape the way that country after country responds to the health needs of everyone within their borders, if they do, and if they will. The persistent and evidence-driven advocacy that led to the adoption of the Declaration of Alma-Ata is as necessary as it was more than 40 years ago. Communities of people living with HIV and key and affected populations must again mount a struggle equal to the most intensive struggles for decent treatment from the early years of each country’s epidemic response. We must include a broad range of affected communities and lead by example by focusing our own advocacy with and for the most excluded in our communities first (such as those without access to treatment, those incarcerated, those facing deportation, those whose viral loads remain persistently detectable).
Without strong and concerted advocacy to help shape the global health response, we face the great risk of transforming a right for all into a privilege for the few.