“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”.
Today would have been her birthday. I remember the afternoon when my mother told me that the hospital result showed that the lump on her arm was cancer. My life changed that afternoon. I couldn’t imagine our lives without her. We were so close that the neighbours called us “the duck and its ducklings”. .
She was desperate to stay alive “I just need 3 more years to allow Jo finish school” she often said. (Jo is my younger sister) .Then my mother began the very expensive treatment at the Korle Bu Teaching Hospital in Accra.
The Korle Bu Teaching Hospital
Watching her enduring the treatment but worrying about the exorbitant cost of the treatment was very difficult indeed. Both my parents were professionals with regular earnings. Yet, the treatment became unaffordable on their incomes alone. There were times when she missed treatment due to shortage of money. I often ask myself: what if she could have had all the treatment sessions? What if cancer treatment were not so expensive? Would she still be here to see my children?
My mum is one of many- according to the WHO, cancer is one of the leading causes of death in developing countries. Most affected people are simply unable to afford the cost of treatment.
The outrageous cost of cancer treatment is not limited to developing countries. Last year, NICE decided that Kadycla, a medicine to treat breast cancer, is not to be prescribed by the NHS due to its high cost. The outrageous cost of Kadcyla -£90,000 annually per patient- led a coalition of public health advocates to send a letter to Jeremy Hunt requesting that he issues a compulsory licensing to break the patent and enable generic production of affordable versions. Needless to say, that the UK will not do so.
Yet if the British government can’t afford the price of medicines, what chances have the governments of poor countries got to provide such drugs for their citizens? And how rich should a person be in order to be able to afford cancer medicines?
But pharmaceutical companies hide behind the lack of health care in developing countries as a justification of ignoring the plight of people living with cancer there. Recently the CEO of Astra ZDuckeneca claimed that free cancer medicines are not beneficial for Africans. If he looked back he might have remembered similar claims about HIV medicines when it was said that Africans cannot handle ARVs. Yet thanks to civil society campaigns and generic medicines, now 15 million people are on treatment.
Clearly African governments need to invest in health systems in order to achieve their commitment to Universal Health Coverage and provide the much needed services to their citizens. This has to go hand in hand with global efforts to decrease the prices of medicines.
Sadly my mum didn’t get the three years she wished for and I miss her dearly. But I really hope for the time when people won’t lose their loved ones just because they couldn’t afford the medicines they need. I am awaiting the report of the High Level Panel, set up by the UN Secretary General to address the imbalance between human rights, trade and Intellectual Property and access to medicines. It is critical that the HLP makes clear recommendations to the UN leaders on how to ensure that the global system for R&D results in health technologies being affordable to all patients.
The Ebola outbreak has shocked the entire world of global health. Even while Ebola lingers in West Africa the future of health security and the organisation of health systems are being debated.
There have been many conferences held and reports published to provide “lessons learned from the Ebola crisis. A thread running through all of these events has been an agreement on the need to build resilient health systems. Yet building such a system requires planning, investment and serious long term commitment. Short term investment does not produce the necessary workforce needed for a functioning health system. Dhillon and Yates identified 5 key areas that require immediate attention in order to rebuild health systems: community based systems; access to generic medicines; restoring preventive measures; integrating surveillance into health systems and strengthening management.
An Oxfam paper identifies six critical foundations for resilient health systems. I can visualise these foundations as a chair with 4 legs. If you keep one leg short and invest in another leg, the balance is tipped and the chair falls. Meantime if you ignore the base or the back of the chair, it moves from the seating area to the recycling bin!
An adequate number of trained health workers, including non-clinical staff and Community Health Workers (CHWs)
The urgency of allocating resources over a ten year period cannot be better expressed than by Bernadette Samura, a health worker from Pamaronkoh, Sierra Leone:
“Because many nurses have died, it is time for the government now to train more nurses’.
Based on the WHO’s minimum standards of 2.3 doctors, nurses and midwives /10,000 people, Oxfam calculated the gap in these workers and the cost of training and paying them. Liberia, Sierra Leone, Guinea and Guinea-Bissau require $420m to train 9,020 medical doctors and 37,059 nurses and midwives. Once they were trained, a total of $297m annually would be needed to pay their salaries for 10 years. It is worth remembering that at the height of the outbreak, all humanitarian agencies were desperately seeking program managers, logisticians, financial officers, epidemiologists, community mobilizers, and others in addition to clinical staff. Yet these cadres hardly feature in global talks or statistics about the necessary composition of an adequate health workforce.
The lack of vaccines and medicines for Ebola shone a spotlight on the failure of the global research and development (R&D) system. The current system relies on monopoly created by intellectual property rules which leads to pharmaceutical companies conducting R&D in diseases that are expected to produce high profits. In order to get the balance in favour of public health, the public sector has to have a hold over sitting the health priorities and financing of R&D.
The Ebola outbreak highlighted the critical role of HIS in disease control. However, surveillance, which is now being highlighted as critical to disease control, needs to be an integral (not parallel) part of HIS and the overall health system. Epidemiologists alone will not be able to produce useful and reliable data. Effective surveillance requires doctors and nurses to diagnose the diseases, and community workers who gain community trust to report cases. All these workers are needed to act appropriately in their respective roles to prevent the spread of and treat those affected by these diseases.
There are 0.8 hospital beds per 10,000 people in Liberia and 0.3 in Guinea compared to an average of 50 beds in OECD Countries. Scaling up the number of well-equipped health posts and district hospitals, especially in underserved areas, is critical not only to address health needs but also to build community trust in health systems.
Countries’ experience clearly indicates that long term sustainable, reliable and equitable financing has to be based on public financing. The annual funding gap that must be covered in order to achieve universal primary health care is approximately $419m for Sierra Leone, $279m for Liberia, $882m for Guinea and $132m for Guinea-Bissau. Although the sums specified are large it is possible to raise the necessary resources by relying on various forms of tax funding, innovative financing and donors’ support. For example, in 2012, tax incentives awarded to six foreign companies in Sierra Leone were estimated to be worth eight times the national health budget.
Evidence shows that countries that achieved or made progress to achieve UHC relied on a strong public sector. Relying on private provision risks creating a two tier system, whereby poor people pay for a dubious quality of service from drug peddlers and others, while wealthy people enjoy the services of 5-star hospitals.
Building resilient systems that protect people’s health and deal with outbreaks has to address all the six elements of the system simultaneously and systematically. Achieving better health outcomes for all and protecting the world from emerging diseases requires a long term global commitment for building health systems. This must start now.
Organisation for Economic Co-operation and Development
Calculated from the estimated figure to reach UHC (the agreed $86/person per year multiplied by the population number) and the current public spending on health
The WHO has announced that the election process for the new Director General (DG) is now open. The election comes at a critical time in the organisation’s history. WHO was criticised by many for failing to respond to Ebola sufficiently quickly, while the fact that Member States had de-prioritised WHO’s emergency work and cut WHO funding was not widely acknowledged.
WHO has been facing serious financial difficulties for more than 6 years. The crisis prompted Margaret Chan to launch a reform process in 2010. Implied in the reform plan was a correction of the imbalance in the WHO budget whereby ear-marked project funds outweighed flexible core funding in a ratio of 80/20. Six years later and the financial imbalance has not improved. It is also not clear what different member states require from the reform. WHO is in danger of becoming a ‘pay-as-you-go’ service organisation, far from its constitutional mandate.
The results of underfunding its core budget are not only limited to decreased WHO ability to perform its functions, but it also threatens its independence. Countries rely on WHO’ guidance on the assumption that advice is independent from commercial and political interests and is based on science and evidence.
Previous elections lacked transparency and failed to allow public scrutiny of the process. The global health community did not know the “manifestos” of the candidates or how they would prioritise and deal with global health problems.
The prestigious medical journal The Lancet has attempted to fill the manifesto gap by inviting candidates to share their visions. The journal also did its own ranking of the candidates according to the key competences needed for the job.
In the new recruitment processes, the WHO has announced some changes aimed at enhancing transparency. These include a forum for Member States to interact with the candidates, and allowing the WHA to choose from three candidates – instead of simply approving one.
The new DG will have to face huge challenges in terms of the impact of years of financial stringency on core functions and on moral and mandate as well the difficulties facing the role of the WHO in the complex global health field. Given the critical importance of the DG role and the challenges he/she will face, we recommend that mechanisms be put in place to enable public scrutiny of the candidate’s vision for the WHO. In order to enable this public engagement we propose:
As countries begin to nominate their candidates, the global health community is entitled to know where candidates stand on key health questions as well as on the fundamental challenges and issues facing the WHO.
This blog is made of short scenes because the woman’ story at the end is worth a thousand studies, statements, national or international policies.
Scene one 1986 DC
Economists do a lot of studies and extensive thinking on the critical issue of how to finance health care. They tell the world that governments cannot afford to pay for health care and that free care encourages overuse and therefore people must pay fee for services.
Scene two: October 2012 DC
Over the years mounting evidence demonstrates how user fees excludes poor people especially women from access to essential healthcare. Hundreds of NGOs send a letter to Jim Kim the president of the World Bank requesting the bank to support countries removing user fees.
Scene 3: Dec 2013 Tokyo
Jim Kim the president of the World bank says: “Even tiny out-of-pocket charges can drastically reduce [poor people’s] use of needed services. This is both unjust and un-necessary “
Scene 4: March 2016 Cameroon
Newspaper published a horrific story of a pregnant women dying at the hospital door in Cameron simply because she could not afford user fees. Her niece tried to deliver the twins but both died.
Scene 5: still to come
Governments abolish user fees. Donors including the World Bank work with the governments to fully finance essential health care for all that are free at the point of use. In Cameroon women deliver attended by trained health workers without paying for the service.
303 organisations including NGOs, academic institutions, foundations and patients groups have reacted with alarm at a last minute proposed change to the indicator used to measure financial protection for health under the Sustainable Development Goal (SDG). We understand the World Health Organisation and World Bank are similarly concerned. While maybe sounding technical or trivial, if the new indicator for Universal Health Coverage (UHC) is left unchanged it could lead to more not less exclusion of women, marginalised groups and people living in poverty from the health care they need and have a right to receive. As such, those responsible for decision making within the SDG process have an urgent responsibility to act.
The hope is that the groups responsible for finalising the indicators and associated methodologies (the UN Inter-Agency Expert Group and UN Statistics Division) will take the opportunity of a meeting taking place tomorrow and until 11th March in New York to urgently review and amend this dangerous and counter-productive newly proposed indicator. Failing to do so could mean an enormous and unprecedented opportunity to advance Universal Health Coverage globally will be lost.
How did we get here?
The SDG target for UHC is to “Achieve UHC, including financial risk protection, access to quality essential health care services and access to safe, effective, quality and affordable essential medicines and vaccines for all”.
The WHO and World Bank worked intensively for three years in consultation with the health experts in governments, academia and civil society to define and measure UHC. This work included: data to be collected, how to collect it and the feasibility of collecting standardised data that allow measures to be compared across time, populations and countries.
It was agreed after a lot of haggling with different parties that UHC could be measured using a minimum of two indicators – one for coverage of essential health services and one for financial protection. Although the indicators developed by the WHO and World Bank were not perfect, there appeared to be a consensus across the global health community to accept and support the results of their work.
It therefore came as a shock that a radical and regressive last minute change was made to the proposed indicator for financial protection by the UN Inter Agency and Expert Group on Sustainable Development Goal Indicators (IAEG) at their most recent meeting at the end of February. The proposed indicator was changed from:
“Fraction of the population protected against catastrophic/impoverishing out-of-pocket health expenditure”
“Number of people covered by health insurance or a public health system per 1000 population”
A letter sent last Monday 29th February by 260 organisations (and now supported by 303 and counting) to the IAEG group members called for urgent action to revoke the proposed new indicator and revert back to the original indicator agreed by the WHO and World Bank.
What’s the fuss about?
The purpose of the financial protection indicator (number 3.8.2) is simple: to find out if there is progress being made regarding people accessing health services without falling into poverty (if they are not poor), or falling into deeper poverty (if they are already poor). The indicator must also be able to fulfil the SDG commitment to measure progress across disaggregated groups, especially for those on the lowest incomes and across marginalised groups.
The proposed new indicator is not just meaningless with regard to measuring financial protection for health, it’s also dangerous. In reality it could measure as so-called ‘progress’ an actual increase rather than decrease in impoverishing and catastrophic health expenditure by households.
Problems with using health insurance coverage as an indicator include:
Problems with using coverage by a public health system per 1000 population as an indicator include:
Whilst health insurance coverage as an indicator is dangerous, the alternative – ‘coverage by a public health system’ – is simply meaningless and not objectively measurable. Citizens in many countries may have a legal entitlement to a public health system but still have to make substantial payments to access services.
A colleague from India summed up the absurdity of the proposed new indicator better than I:
“This is quite ridiculous for a country like India. The ‘number of people covered by a public health system’ in India is always 100% as per government policy and programme plans! As regards coverage by health insurance, it is assumed that if covered by insurance all expenses are taken care of. It obviously is not often the case.”
The change we hope to see in the next few days
A series of meetings will take place in New York between 8th and 11th March where the members of the UN Statistics Division and the IAEG will aim to review and finalise the status of the indicators and the methodologies to measure them. We are hopeful that given the united call of so many organisations in support of the indicators developed by the World Bank and the WHO, that the members will review and amend indicator 3.8.2. This should not be a political issue but a methodological one – we need an indicator that measures improved financial protection for health. The current proposal fails to do that.
For those organisations wishing to sign on to our joint letter calling for action to revise this dangerous indicator please add your organisational name and contact details via the following link: https://www.surveymonkey.co.uk/r/2RZGMS7