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.
In September 2015, all countries committed themselves to a new set of sustainable development goals (SDGs). One of the targets to achieve the health SDG is Universal Health Coverage (UHC), whereby everybody receives the health services they need without suffering financial hardship[i]. Across the world, countries are recognizing that achieving UHC requires a publicly financed health system to ensure risk pooling where healthy and wealthy members of society subsidize services for the sick and the poor[ii]. Conversely, a privately-financed, free market in health services has proven that it will never achieve UHC – a fact which has now been recognized by experts and agencies who previously promoted private health financing[iii].
Countries such as Thailand, Sri Lanka and Costa Rica have demonstrated that the key to achieving UHC is to replace private voluntary health financing (user fees and private insurance) with compulsory public financing (in particular tax financing). This not only improves people’s access to health services it also reduces the impoverishing burden of out-of-pocket (OOP) health expenditure[iv].
A country which learnt this lesson before many of its peers is Malawi. Despite only having a GDP per capita of around $350, Malawi was one of the few African countries to achieve MDG 4 in reducing child mortality. This achievement was celebrated in a Lancet Global Health paper[v] which highlighted Malawi’s success in increasing the utilization of a number of effective health interventions by children– for example immunizations and treatments for infectious diseases.
However, this analysis didn’t mention a key feature of Malawi’s health system which has made it unique within the continent of Africa: Malawi has been the only country in Sub-Saharan Africa to provide universal free health services throughout its public health system and never charge user fees – with the exception of some recent worrying user fee experiments I have written about here. Having not put in place this demand side barrier, utilization of services has been higher in Malawi which has enabled the country to make faster progress towards the MDGs and UHC[vi].
This is illustrated vividly in the following graph, from WHO Afro Region. The graph illustrates that with a relatively high level of public financing of 5.8% GDP (which includes aid financing) and a no user-fees policy in place in public facilities, Malawi records only a 12% share of total health expenditure in the form of out-of-pocket financing. This is a good proxy measure for the level of financial protection offered by the Malawian health system and it is at a level significantly below the 20% maximum level recommended by WHO.
Conversely in Nigeria, which only spends 0.9% of its GDP in the form of public health financing and where user fees are charged at all levels, private out-of-pocket health financing accounts for 72% of total health expenditure – one of the highest rates in the world. At these levels of OOP payments not only are millions of Nigerians being impoverished by health care costs or prevented from accessing vital healthcare altogether, considerable human rights violations are also resulting where many people are detained in health units because they can’t pay their hospital bills[vii]. This latter phenomenon is unheard of in Malawian public hospitals.
But perhaps the most stark illustration of the difference in performance between these two countries at the opposite ends of this curve, is that whereas Nigeria is 8 times richer than Malawi, Nigeria’s child mortality rate (109 deaths per 1000 live births) is 70% higher than Malawi ’s (64 deaths).
In reviewing these records, the obvious policy recommendation for Nigeria is that it too should increase its public health spending and abolish user fees in its public health system. And for Malawi, the lesson should be to build on this success and use further increases in public financing to improve the availability and quality of free services.
The Government of Malawi’s recent policy announcement to implement service level agreements which will fund selected CHAM facilities to provide free services will be an excellent way to fulfill this objective. Needless to say, if Malawi wants to stay ahead of the pack, it should scrap the hospital bypass fees that have been introduced recently, and certainly ignore the siren calls to introduce user fees more broadly in the public health system. This would simply take the country up the curve to join those where poor people don’t access health services because they can’t afford them, and where more children die before their fifth birthday.
 And a very brief period in 1964, when a misguided expatriate advisor persuaded the government to introduce fees. However, following extensive public demonstrations President Banda soon reversed this policy to restore universal free services
 Christian Health Association of Malawi
[ii] Yates R Universal Health Coverage: progressive taxes are key
The Lancet , Volume 386 , Issue 9990 , 227 – 229 Available at: http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(15)60868-6/abstract accessed 28 July 2016
[iii] Lane R 2013 Dean Jamison – Putting economics at the heart of global health The Lancet Vol. 382, No. 9908 Available at: http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(13)62613-6/fulltext?rss=yes Accesed 28 July 2016
[iv] Evans TG et al Thailand’s Universal Coverage Scheme: Achievements and Challenges. An independent assessment of the first 10 years (2001-2010). Nonthaburi, Thailand: Health Insurance System
[v] Kanyuka, Mercy et al. Malawi and Millennium Development Goal 4: a Countdown to 2015 country case study The Lancet Global Health , Volume 4 , Issue 3 , e201 – e214 Available at: http://www.thelancet.com/journals/langlo/article/PIIS2214-109X(15)00294-6/abstract Accessed 28 July 2016
[vi] Yates R, Child mortality in Malawi The Lancet Global Health , Volume 4 , Issue 7 , e444 Available at http://www.thelancet.com/journals/langlo/article/PIIS2214-109X(16)30083-3/abstract Accessed 28 July 2016
[vii] Agbonkhese J FG urged to end detention of women in hospitals nationwide Vanguard online 2 February 2015 Available at http://www.vanguardngr.com/2015/02/fg-urged-end-detention-women-hospitals-nationwide/ Accessed 28 July 2016
“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”.
These were Tobeka Daki’s words to the audience during a session at the International AIDS Conference in Durban last week. The session, titled ‘A call to world leaders to enhance research and development (R&D) and access to medicine, and an appeal to the UN High Level Panel (HLP) on human rights and access to medicine’, was co-sponsored by Treatment Action Campaign, Stop AIDS, Open Society Foundation and Oxfam.
Tobeka is deprived of the medicine that can save her life because Herceptin costs half a million Rand ($35,049) per patient per year in South Africa. Meanwhile, Roche is celebrating its successful financial results of June 2016:
“The net income increased 4% to 5.5 billion Swiss francs ($5.57 billion) in the six months to June 30, beating analyst estimates of 5.3 billion. Revenue rose 6% to 25 billion francs, in line with estimates”. ’
The global R&D system for health technologies results in such high prices of new medicines because it is based on maximisation of profits to incentivise investment in R&D. The system has generally failed to deliver affordable health technologies to prevent and treat diseases. While governments (except Least Developed Countries ) are obliged to implement intellectual property protection as part of the agreement on Trade Related Aspects on Intellectual Property Rights (TRIPS), they are also obligated under international human rights law to fulfill their citizens’ rights to health and access to treatment.
The mandate of the HLP, established by the UN Secretary General, is to make recommendations to remedy “the policy incoherence between the justifiable rights of inventors, international human rights law, trade rules and public health in the context of health technologies.”
Sixteen years ago at the International AIDS Conference held in Durban in 2000, civil society sent a strong message to world leaders that people living with HIV must have access to life-saving antiretroviral medicines (ARVs). At that time, ARVs were available only in the “North”, while the majority of people living with HIV lived in Southern countries. At this year’s conference, people celebrated the fact that 17 million women, men and children are now accessing treatment. Thanks to generic competition that dramatically reduced the price of ARVs, it was possible to mobilise global public funding to pay for treatment programmes. However, will it take another 16 years before the 19 million people living with HIV – but without access to treatment – can receive the medicines they urgently need?
Generic competition for new medicines is almost completely limited because India, commonly known as the pharmacy of the developing world, has adopted TRIPS and is now under great pressure to increase its intellectual property protection even beyond TRIPS.
Meanwhile the world is waking to the reality that cancer is not a disease of rich countries but is affecting increasing numbers of people everywhere. According to the World Health Organisation, 70% of cancer mortality (5.5 million people) now occurs in the developing world. Other diseases such as multiple sclerosis – which used to be considered “Northern” conditions – are increasingly being diagnosed in developing countries. The prices of medicines for these diseases are beyond the means of patients, governments and insurers.
It is in this context that the scope of the HLP covers all diseases and is not limited to neglected diseases in developing countries. The HLP recognises that new cancer medicines are priced beyond the capacity to pay even of governments in the North. Both the public and the private sectors are struggling to provide these medicines to patients in Europe and in the US.
And it is not only cancer medicines that are unaffordable. At the conference I met two people from Sweden working to support women living with HIV. We talked about medicine prices and they assured me several times that they did not face any problem in Sweden because medicines are free in the public sector. One of them compared her “good luck” to people in Africa who face high prices for hepatitis C treatment. She then said that she herself suffered from hepatitis C but could not get the medicine because according to national guidelines her liver “is not bad enough” to qualify for treatment. It was eye-opening to see how Europeans are unaware of the relationship between high prices and the rationing of treatment. Today England was criticised for rationing hepatitis c treatment by limiting the number of people who get the medicines every year.
As civil society we see the need to revitalise the access to treatment movement in order to promote much needed global reforms in the R&D system for health technologies. The HLP provides an important opportunity for UN member states to address the conflict between securing the human right to health and medicine, and countries’ obligations under the TRIPS agreement, taking account of access problems in all countries, for all diseases. These reforms could be a vital first implementation of world leaders’ commitment to “leaving no one behind”.