Today is World AIDS Day, a day to celebrate the many lives saved and to remember the many lost to the HIV virus. Importantly it is a day to reflect on what we have learnt from working to address the inequality challenges of the HIV epidemic. This is particularly critical for civil society, and others, working to reverse inequality. I will focus here on 4 lessons:
Lesson one: Inequality kills. Millions have died because they were too poor to pay the exorbitant prices of medicines & hospital fees. Investing in public health systems to offer free service as the point of use and in affordable medicines are essential to save lives and tackle inequality – both health inequalities and crucially, economic inequality.
We must remember that it was civil society movements that put pressure on pharmaceutical companies and created the environment for Indian companies to compete and thus slash the price of HIV medicines from $10,000 to around $ 100/ person /year leading to the over 18 million people on treatment now. Inequality in access to medicines affects millions all over the world. A big cause of this inequality is the global system of biomedical research and pricing, which leaves critical decisions on medicines- basically the decision on who lives and who dies – in the hands of pharmaceutical companies. This system needs re-thinking to ensure availability of the medicines we need at affordable prices.
Therefore, the recommendations of the UN Secretary General high level panel on medicines published just a couple of months ago are a great step in the right direction to ensure that the research and development (R&D) system produces affordable medicines for people who need them. We hope for the UK leadership in implementing these recommendations. We see interdependence between progress on the issue of anti-microbial resistance (on which we have seen magnificent leadership from the UK government) and delivery on the UN panel recommendations to transform the R&D system for accessing medicines.
The second lesson is related to a critical dimension of inequality, which is accessing health services. A big lesson from HIV is that its services are fundamentally free and thus saving the lives of the 18 million people who are on treatment. This must extend to all health services. Paying for health care pushes 100 million people into poverty each year. One billion people are denied health care because they can’t afford to pay. Health services free at the point of use are critical to prevent this situation and to enable people to stay healthy and productive – thus improving livelihoods and economic growth. Women bear the brunt of paying for health care as they have to care for sick family members and they are the last to access paying services. Recently the UN statistical group mandated to frame the indicators to measure the Sustainable Development Goals, agreed on the indicator that measures the financial protection arm of Universal Health Coverage. The indicator 3.8.2 will measure what really matters: the out of pocket expenditure on healthcare. Again, civil society has been instrumental in establishing this indicator.
ِِِِAccess to HIV treatment could not happen without securing adequate financing. This is the third lesson. Thanks to domestic and donors funding like the Global Fund, poor and marginalised people can access the services.
Building resilient health systems that provide services needed for HIV, other diseases including non communicable diseases and emerging infections, requires adequate and sustainable financing. Public financing is critical – there is now consensus across the global health community that all governments must push forward urgently on achieving universal health coverage. At the core of the consensus is an understanding that an increase in public financing for health is a non negotiable ingredient for success.
Oxfam campaigns on tax reforms as a fundamental solution to raising additional needed revenue and at the same time redressing extreme economic inequality. However, few low and lower middle income countries have sufficient resources, even with significant tax reform, to pay for health care for all. Aid should be provided in the right way – supporting the expansion and improvement of public health systems, the removal of fees and the scale up of the health work force
It’s a worrying trend that the marginalised and vulnerable in middle income countries are being left behind as a direct result of the trend of withdrawing development assistance from these countries. This is clearly illustrated in the negative impact on HIV programmes that is supporting marginalised groups and civil society advocacy. Donors have a responsibility to transform their support in a way that addresses the needs of marginalised groups.
Last but not least, active citizenship – people’ involvement in decision making has been a great driving force to overcome discrimination and the marginalisation of women, sexual minorities and other marginalised groups. This is at the heart of the success in the response to HIV and is at the heart of our inequality campaign
These four factors require the world to make long term commitments to investment in R&D, in free public services and in enabling community and civil society participation in decision making and in monitoring the commitments of governments, donors and international agencies. This is critical if the world leaders are serious about leaving no one behind.
We are delighted to announce a victory for the drive for universal health coverage. We will now be able to count the cost of paying for healthcare for households around the world. It is truly exciting that in a couple of years we could have sound global data on what kinds of health financing mechanisms are most effective for leaving no one behind in healthcare. Armed with this, we can call for policy changes to achieve more equity in health and prevent the 100 million people currently being pushed into poverty each year paying for health care.
Today, the group of experts tasked with developing the indicator framework to measure progress towards the Sustainable Development Goals (SDGs), have agreed to measure financial risk protection of universal health coverage by ‘’proportion of the population with large household expenditures on health as a share of total household expenditure or income”. This signals a great shift in from the previous dangerous indicator that would just measure population with access to health insurance or a public health system.
The previous indicator was flawed because it did not measure whether or not people were actually financially protected against potentially catastrophic costs for health care. It would have also failed to measure progress across different income groups or by gender. It was also dangerous as it sent a signal to governments around the world that health insurance was the route to achieving Universal Health Coverage despite robust and scientific evidence that many voluntary health insurance schemes have exacerbated inequality.
A global campaign was mobilized to replace the dangerous indicator with one which ‘measures what matters’.
In a campaign largely coordinated by Oxfam, civil society organisations, academics, development agencies and statistical authorities expressed their deep concerns with letters, lobbying and public statements. Now we can celebrate a step closer to universal health coverage that leads to everyone accessing the quality health services they need without being pushed, or pushed further, into poverty.
In March this year we posted a blog on global health check about a dangerous and surprising last minute change to the indicator measuring financial risk protection for Universal Health Coverage (UHC), being developed by the Inter-Agency Expert Group on the Sustainable Development Goals (IAEG-SDGs). The IAEG is meeting in Geneva this week and aims to conclude discussions on this indicator (3.8.2), along with some of the other contentious indicators they have identified within the SDGs global indicator framework.
Since we reported on the danger of the nonsensical indicator undermining the highly valued SDG target on achieving UHC (that gives everyone access to quality health services, without causing impoverishment), the global health community has mobilized in large numbers to call for the reinstatement of the original indicator or a revised version of it, as proposed by the World Health Organisation (WHO) and World Bank (WB). Here are a few highlights of the actions from a range of constituent communities with a stake in this issue over the past few months:
The motivation for all this is to warn against keeping the current indicator whether on its own or in combination with the WHO/WB refined indicator. The current – flawed – indicator to measure financial risk protection for UHC reads:
‘coverage by health insurance or a public health system per 1,000 population‘.
The reasons this is not fit for purpose are manifold:
As an illustration of these flaws see the stories of Ranu and Esther.
Thankfully the IAEG is considering the alternative WHO/WB proposed indicator – one that is based on a global consensus following extensive consultation over a 3 year period. This alternative reads:
“Proportion of the population with large household expenditures on health, as a total share of household expenditure or consumption.”
This is relevant to the UHC target, as it directly measures the financial impact on households of the costs of health services. It is methodologically sound and grounded in an internationally agreed standard definition which is scientifically robust and policy neutral. Information and data is readily available from routine household surveys conducted by national statistical offices (e.g. Budget Surveys, Income and Expenditure Surveys, Living Standards Measurement Surveys) to support calculations. Furthermore, it is amenable to disaggregation on income, gender and geographical location.
A risk remains that in an attempt to reach agreement the IAEG members will include the WHO/WB proposed indicator as an addition rather than replacement to the flawed indicator. This is unacceptable for all the reasons above but also because countries are already straining with the weight of the SDG measurement framework and it would be a waste of their precious resources. Any data issued by governments using this indicator as a measure will be useless and thus easily ignored by health and statistical experts such as the 351 signatories who signed the health academics letter, the 100s of NGOs who’ve signed letters on this, and the 22 statistical authorities who submitted to the online submission. It would work to counter the hard won global consensus and huge momentum on UHC. And the losers would be all those currently left behind by their own national health systems – those like Raju and Esther who face the stark consequences of paying out of pocket for their health care.
To avoid this danger, the current indicator must be taken off the table completely. Instead of keeping this wasteful indicator, let’s measure what really matters: the impact of health spending on households.
There is hardly a day that goes by without some headline about a highly priced medicine that is beyond the means of those who need it. For decades, access to medicines was automatically associated with problems in poor countries. However, it has now become clear that the high price of medicines is crippling healthcare systems everywhere in the world. Patients’ stories from South Africa to Sweden and from Colombia to the UK tell the difficult reality of people’s struggle to get access to life-saving medicines.
For example, the price of effective medicines to treat Hepatitis C can be over $100,000 per patient. The Dutch government’s submission to the High Level Panel states that “We have an estimated 20,000 patients with this disease. Such costs make our healthcare unaffordable. If we continue in this way, it will become nearly impossible to reimburse patients for these medications”.
The prices of cancer medicines are beyond the reach of many patients who need them especially in developing countries.
“I was diagnosed with breast cancer in 2013. My insurance refused to cover my Herceptin treatment because of the high price. Now the cancer has spread all over my body. I need Herceptin so that I can live and bring up my two boys”.
“Tobeka Daki from South Africa”
While the high medicine prices is one side of the access problem, the Ebola crisis highlighted the other side: lack of innovation for public health needs. The current global system relies on intellectual property (IP) rules that create monopolies in order for pharmaceutical companies to generate profits and thus to finance research and development (R&D). Where companies see they can make money, they even invent new disease’ names for medical conditions to market their medicines – as in the latest case of opioid-induced constipation. In that case, clinicians who found a way to ease the suffering of the dying got investors to bring a drug to market only when a broader market was identified – the opioid dependence that has reached crisis levels in the United States. But where there is no profit, such as in the case of Ebola, there is no investment from companies.
In December 2015, the UN Secretary General established a High Level Panel (HLP) to “recommend solutions for remedying the policy incoherence between the justifiable rights of inventors, international human rights law, trade rules and public health in the context of health technologies.” The HLP is a unique opportunity to advance access to health technologies for several reasons. The HLP acknowledges the potential conflict of interest between the human right to health and IP rules. Moreover, unlike other initiatives that have tended to focus on neglected diseases, the HLP tackles all health technologies for all diseases in all countries.
The HLP published its report in September 2016, which includes recommendations that represent positive steps to advance access to medicines. On the innovation side, the report recommends that the UN Secretary General start a process for UN member states to negotiate a binding R&D convention that delinks the cost – and hence financing – of R&D from the price of the final product. This is a critically important initiative. The pharmaceutical industry justifies the ever increasing prices of medicines by citing the high cost of their R&D even though all information related to those costs is shrouded in secrecy. The industry also fails to recognize the important role of public financing for R&D. The HLP report calls for increased public financing through domestic resources as well as innovative sources like the financial transaction tax. However, increasing public financing for R&D is not enough unless there are binding agreements for affordable prices of the resulting products.
Nearly all issues related to medicines are shrouded in secrecy. Therefore, it is important that the HLP report recommends transparency of information involving R&D costs, medicine pricing, patent status and clinical trials, as well as negotiation of Free Trade Agreements (FTAs).
On the access side, the report recognises the political and commercial pressures that countries face when they try to use the flexibilities enshrined in the World Trade Organization’s (WTO) Trade Related Aspects on Intellectual Property Rights (TRIPS) Agreement, which allows governments to adopt specific policies to protect public health. Free Trade Agreements (FTAs) include measures that actually restrict governments’ ability to adopt pro-health policies. While the report recommended that countries register any pressure they face at the WTO, and countries to conduct impact assessment on potential effect of FTA measures on access to medicines, it fell short of proposing an immediate ban on excessive IP protections in FTAs.
Unfortunately, the US government and pharmaceutical companies started attacking the report even before it was published. The unholy alliance between rich country governments and the pharmaceutical industry employs extensive resources and pressures to stop the development or promotion of alternatives to the current IP system to finance R&D, which is based on conferring monopoly power to extract the highest profit from the end product. But this system is failing patients around the world. Now is the time for change, for a system that places the human right to health as the determinant of the R&D agenda and enables affordable pricing of products.
Good recommendations require active engagement that leads to action if they are to bring about beneficial change. Concerted efforts are now needed for the UN system and member states to adopt and implement the HLP recommendations. Otherwise the report will simply end up gathering dust on some shelves in a UN office. It is now in the hands of the UN Secretary General to move this process forward. His action would be a valuable parting gift to the world as he leaves office at the end of this year, a critical step toward ensuring access to medicines for all so no one is left behind.
These recommendations have limitations, which are explained in the Commentary included in the report’ Annex, by three panel members, including Winnie Byanyima, Executive Director of Oxfam International.