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The Working Group met on Monday, 9 March in Groningen. The following are some highlights of the presentations by Dr. Brigit Toebes (University of Groningen) and Erna Kusumawati (University of Groningen). Thank you again to all who participated, and to the speakers for their wonderful presentations and thought-provoking discussion!
Accountability and the right to housing in Indonesia
Erna’s PhD research will focus on how accountability can be used as a tool for improving the realisation of the right to adequate housing.
Her work will be inspired by Helen Potts’ work on the four requirements necessary for the realisation of the right to health. Erna will look at the development of (judicial and administrative) accountability and the right to housing in Indonesia, and the extent to which they are implemented through domestic laws. She will be looking at 5 major cities in particular, and will carry out field research and interviews to compare the promise of accountability through laws and in practice.
Ebola and the right to health: a human rights law and governance perspective
Dr. Brigit Toebes
The Ebola crisis raises important questions from perspective of health governance and the right to health, as a range of actors are failing to deliver a solution to the impact of the disease on human rights.
The discussion focused on the issues of what the relevant laws are to address the crisis, whether a human rights approach is the most appropriate, and where the responsibility lies. Questions such as whether the states affected by the crisis should take human rights responsibility, or whether the international community has an obligation to aid affected countries (perhaps based on extraterritorial obligations) were addressed. We also discussed the potential collaboration between national governments, neighbouring states and non-state actors to tackle the disease together.
Future of the Working Group
The Working Group is now proud to be a collaborator with the Global Health Law Groningen Initiative!
We also have new Twitter and LinkedIn accounts, where you can also follow and connect with us. These accounts are also linked to the blog (see below). If you would like to contribute to the blog, or have ideas for news or up-coming events, please don’t hesitate to get in touch!
The next Annual Research Day of the Working Group was also discussed, and will be finalised during the next meeting. If you are interested in being involved in the event or its organisation, please contact us at firstname.lastname@example.org.
The next Annual Research Day of the Working Group was also discussed, and will be finalised during the next meeting. If you are interested in being involved in the event or its organisation, please contact us at email@example.com.
Written by Shamiso Zinzombe
Introduction – Since March 2014, Ebola Disease Virus (EVD), a severe often fatal illness in human beings, has reportedly killed 5689 individuals, and counting; the overwhelming majority in Guinea, Liberia and Sierra Leone. Scientists further observe the current outbreak has the highest mortality rate of any prior EVD outbreak. Death is not a necessary outcome of infection; recovery is possible, provided prompt proper care is given to a patient. Prompt proper care allows a patient to live long enough for the immune system to fight the virus. Once a person has recovered from EVD they are immune to re-infection from this strain of EVD. Without prompt proper care EVD is fatal. Indeed all the requests for international assistance are primarily focussed on ensuring prompt care is available for as wide a patient range as possible in the hardest hit countries. Requests for international assistance are also aimed at stopping the spread of the disease and addressing non EVD specific consequences of the illness. In Liberia, for instance, 170 farmers and their families died from EVD. The result is Liberia’s Lofa region, its famed breadbasket, is fallow. EVD is, thus, not only a public health crisis but also a question of human rights.
Background – Transmission of the virus, from one person to another, occurs through close contact with bodily fluids of an EVD infected person who is also symptomatic. Fluids include any bodily fluids from breast milk, semen, vomit, faeces through to blood. Close contact refers to exposure to infected fluid through the recipient person’s broken skin, such as a small wound, or entry via the mucous membrane, such as the eyelid. Hence the reason health care workers and others taking care of EVD patients wear protective cover all clothing. Early symptoms of EVD include sudden onset of fever fatigue, muscle pain, sore throat and head ache; these symptoms progress in severity to include vomiting, diarrhoea, internal and external bleeding amongst others. Therefore, human beings only become infectious to other human beings once they develop symptoms. EVD is also not airborne, thus, it is not transmitted from breathing the same air as an infected person. The period between infection and the first symptoms of EVD is 2 to 21 days. Medical tests are carried out in order to confirm an EVD diagnosis. Diagnostic tests confirming EVD are necessary because its early symptoms suggest many other potential illnesses from the common cold to more serious illnesses such as meningitis. Once this has occurred, treatment options include support therapy, which involves hydrating a patient, maintaining their oxygen and blood pressure levels, providing them with nutrients, providing them with antibiotics for any complex infections. Treatment in a health care facility occurs in an area especially prepared for EVD patients to avoid infecting non EVD patients. Treatment at home also involves isolation with one primary care giver in order to limit spreading the illness to the whole family. Care givers in health care facilities or at home should wear protective clothing. While currently there are no proven medicines for treatments or vaccines, it is possible to recover from EVD. However, as noted above recovery occurs only when prompt proper care has been given to a patient. Without prompt proper care EVD is fatal.
EVD is also a dehumanising illness, as Mr Niameh an EVD treatment provider for MSF in Monrovia poignantly explained to the United Nations Security Council at its 7268th meeting on 18 September 2014,
“We have seen so many patients die. They die alone, terrified and without their loved ones at their side. As medics, we must have a different way of coping. When I go inside the Ebola treatment centre, I keep my focus on my patients’ needs. We try to attend and help first those who are much weaker, those who need the most help — food and water — and those who want to talk to our counsellors because they are so traumatized and frightened.
We are trying to treat as many as we can, but there are not nearly enough treatment centres and beds. We have to turn people away, and many are dying at our front gate. Right now, as I speak, there are patients sitting at our front gates, literally begging for life. They rightly feel isolated, neglected, alone and denied. They are left alone; they die a horrible death, an undignified death. We are failing the sick because there is not enough help on the ground. We are failing those who will inevitably become infected, because we cannot care properly for the sick in a safe, protected environment to prevent the spread of the virus.
One day this week, I sat outside the treatment centre eating my lunch. I met a boy who approached the gate. His father had died from Ebola a week ago. I saw him with blood at his mouth. We had no space, so we could not to take him in. We could see that his mouth was bloody. When he turned away to walk into town, I thought to myself that that boy is going to take a taxi, and he is going to go home to see his family, be at home and infect his family. He will also infect other people. On my night shift, I saw a patient who was driven in an ambulance about 12 hours because there was no other treatment centre.” [page 6]
Guinea is ground zero for the current EVD outbreak, where initial reports were made in December 2013; but, it was only on 22 March 2014, that the current outbreak was officially declared internationally. EVD is not endemic to Guinea; thus, it was not a country local health care workers’ nor scientists typically expected to find EVD. The virus was previously associated with the Central African countries Democratic Republic of Congo, the Republic of Congo and Gabon all with prior EVD records. The fact that EVD is not endemic to West Africa combined with the early symptoms of the virus, also, created problems in responding to it early on. The virus is difficult also because its early symptoms suggest many other potential illnesses as noted above.
EVD is also a zoonotic disease that means it can be spread from animals to persons and vice versa. In this case the migrating fruit bat, which travelled from Central to West Africa, was identified by scientists as the most likely spark which ignited the current outbreak. Fruit bats are sold to, and consumed as bush meat by, local communities in Guinea. Patient zero, a toddler, is thought to have acquired EVD from eating or handling fruit bat meat. He in turn infected his sister and mother, who also died as an outcome of EVD.
The tinder for this outbreak, public health experts point out, is conflict, its enduring legacy and poverty which all ravaged the health system. For instance, first, in Guinea poverty forced communities to rely on the forest and mines for both food and a living. As an outcome communities were further exposed to the EVD. Second, once infected a person visited a local health care facility for treatment. In fact scientists say EVD spread even more quickly through the community once contact was made with the poorly resourced health system. This occurred because the health care facilities were poorly resourced. Health care workers were forced to treat patients without the kind of protective clothing, amongst other necessary health goods, critical in the care and treatment of EVD patients. As an outcome they were directly exposed to infection and in turn exposed their other patients to the illness.
http://www.un.org/ebolaresponse/data.shtml – Geographical distribution of new and total confirmed and probable cases in Guinea, Liberia, Mali and Sierra Leone – Data are based on situation reports provided by countries. The boundaries and names shown and the designations used on this map do not imply the expression of any opinion whatsoever on the part of the World Health Organization concerning the legal status of any country, territory, city or area or of its authorities, or concerning the delimitation of its frontiers or boundaries. Dotted and dashed lines on maps represent approximate border lines for which there may not yet be full agreement. Data are missing from Liberia for 23 November. *Data for the past 21 days represent confirmed cases in Guinea, Sierra Leone, and Mali. Data for the past 21 days represent probable cases in Liberia due to the unavailability of systematic district-level data on laboratory confirmed cases before 16 November.
Guinea, one of the worlds 10 poorest countries, is ranked 178th, on the Human Development Index that measures the development status of 187 countries. The World Bank reports, prior to the outbreak, Guinea, among the other countries in the eye of the storm, was growing economically. In fact they estimate it grew 4.5%, in October it was 2.4%. However, as Leigh Philip underscored, in his critical analysis of the political economy of the EVD crisis, it is precisely the kinds of policies sponsored by institutions such as the World Bank which led to a weakened health system in these countries in the first place. The policies force countries to reduce spending on things such as public health care. As an outcome when a public health threat such as this occurs, the system is unable to contain it and it easily becomes an epidemic. In the current emergency the World Bank is reported to have given the affected countries a reprieve by placing no limits on their public health care spending though.
The crisis also took on an international tone because the first reports were in a small Guinean town, accessible to Guinea’s borders with Liberia and Sierra Leone. This proximity meant patients easily crossed from one country to the other ultimately leading to the three country regional spread of EVD in West Africa. Liberia and Sierra Leone are ranked 174th and 177th respectively on the Human Development Index. Sierra Leone currently bears the brunt of the crisis. In contrast better resourced health systems, such as Nigeria have been able to stem the EVD tide from growing. For instance once Nigeria’s EVD patient zero was identified, he was isolated, so as not to infect other patients. He was treated by one healthcare worker, who unfortunately caught the illness and died as an outcome. The healthcare system was able to dispatch 1000 professionals in Lagos, a city with a population of 21 million people, who traced persons who had contact with patient zero and monitored them. As an outcome a crisis was averted.
Moreover, as introduced above, the Security Council met to discuss the public health crisis and security implications created by EVD. This was the third time in its sixty nine year history that the Security Council had ever met to discuss a public health crisis. The first two times both concerned an equally grave ongoing, provided there is treatment now ‘chronic,’ public health issue; namely, the HIV/AIDs epidemic. The inclusion of EVD on the agenda at the September 2014 meeting was in response to a request by the governments of Guinea, Liberia and Sierra Leone countries in the eye of the current EVD public health storm. Moreover, all members of the United Nations were invited to participate at that meeting, consistent with Secretary General Ban Ki Moons address in which he underlined EVD matters to us all; because it evolved into a complicated crisis involving significant political, social, economic, humanitarian and security reach. Moreover, the human suffering it created and its spill over effects in the region and beyond demanded the world’s attention. This address is part of the multipronged effort coordinated by the United Nations in response to the bold and responsible call for international assistance issued by the respective leaders of Guinea, Liberia and Sierra Leone; countries all unexpectedly and inenviably in the eye of the current EVD storm.
Human Rights issue – EVD is also a human rights issue. In many ways human rights, particularly in their function as legal and moral principles, ought to be harnessed to fill the gaps in the current response. It is a human rights issue because its definition, root causes, impact and potential approaches/remedies fall within the international human rights framework. For instance the bold call from the leaders of Guinea, Liberia and Sierra Leone for international assistance to tackle the crisis was in fulfilment of their obligation toward their citizens. The response of the international community is equally an indication of their respect for duties under the ICESCR and thus reinforces respect for human dignity of the communities affected by this scourge. Indeed the international community from developed to developing countries have begun to respond and need to continue to do so. For illustration purposes, in October 2014, Cuba for instance had sent a crucial 165 health care staff in the form of doctors and nurses to Sierra Leone. It was also training 300 further health care staff for deployment in Guinea and Liberia. Ghana had made space available for an ‘air bridge’ in Accra, which facilitates transportation of healthcare staff and equipment to affected countries. The United States deployed 3000 troops to the crisis amongst other contributions. EVD is showing each nation can make a contribution to stem the tide of this epidemic whilst reinforcing human dignity. Thus, also, ‘what can we contribute’, rather than ‘should we contribute’, is really the operative question here.
Further, it is an opportunity to make full use of the right to health in Article 12 ICESCR in all its dimensions in order to resolve a regional health crisis with potential international reach. For instance, the right to health does not only exist on the legal plain alone, it exists in policy, science and health care practice. The current EVD engages the following aspects of the right to health, for example, the entitlement to a functioning health system, the rights and duties of health care workers, the entitlement to access medicine, the right to consent or freedom from non consensual experimental medical treatment, the right to underlying social determinants of health, the right to equality, women’s human rights, the entitlement to access to information, the right to participate, the right to international cooperation and assistance, the meaning of ‘available resources’ and more. In addition, protocols put in place ostensibly to stem the tide of EVD in other, predominantly Western countries, engage civil and political rights directly such as the right to freedom of movement, the right to liberty and security of the person among others. For purposes of this entry, because of limitations in time, I shall only mention the questions regarding access to medicine. Here 3 questions arise. The first is one already framed by others, namely why are there no treatments for EVD; particularly as the recurrence of an outbreak is something anticipated. Second, is should experimental treatments be given to EVD patients? Third, to whom should these treatments be given?
General Comment 14 on the Right to Health, provided that the right is made up of a series of freedoms and entitlements designed to ensure enjoyment of the right to, ‘a variety of facilities, goods, services and conditions necessary for the realization of the highest attainable standard of health’. The right to access medicine is a derivative of this framework. It is derived from the function of Article 12 as an entitlement to, ‘a system of health protection which provides equality of opportunity for people to enjoy the highest attainable level of health’. It is also derived from the core listed entitlement to access essential medicine. Yet currently there are no available treatments or vaccines for EVD. However, there are 8 different kinds of potential treatments and 2 vaccines identified by the World Health Organisation in its 2014 publication Potential Ebola Therapies And Vaccines. Among the potential treatments, at least 4 are deemed safe either for indicated use because of use in prior EVD outbreaks, results from scientific testing or from the use of a substance in treating other human ailments. These are: Convalescent Plasma, Hyperimmune globulin prepared by purifying and concentrating plasma of immunized animals or previously infected humans with high titres of neutralizing antibody against EVD, AVI 7537 (Sarepta) Phosphoro-diamidate oligonucleotide and Interferons. At least one treatment option is commercially available, namely Interferons of various kinds. However, WHO in the above report points out with regard to Interferons, “[d]ecisions regarding which one to use, when to use, and the dose regimen need careful consideration.“ The remaining treatments have not yet been tested on a larger population in a clinical trial setting; but, at least 2 of the remaining treatments have been administered either on compassionate grounds in the current outbreak or in other circumstances; namely ZMapp and TKM-100802 Lipid nanoparticle small interfering Ribonucleic acid (siRNA) (Tekmira). The 2 vaccines discussed in the report are Chimpanzee adenovirus serotype 3 (ChAd3) vaccine and Recombinant vesicular stomatitis virus (rVSV) vaccine both are undergoing clinical trials for EVD. It is helpful and encouraging to see all the efforts being made to develop a treatment or vaccine for EVD. A narrow question, given the above outline on potential treatments, is one treatment is already commercially available but unclear clinical or other considerations appear to be delaying critical decisions on its use in the crisis given the above report. Thus, what exactly are the considerations at issue here? A broader question comes from the issues observed and discussed in Leigh Philips article namely; that these potential treatments are largely an outcome of public funding in various countries, the public purse is more than just filling an industry gap, public funding is, as he said, shepherding innovation. For example for 30 years public health experts have been calling for the development of new antibiotics. However, there has been no response from industry because it is not profitable to invest in medicine that is used short term. Internationally scientists predict the need for new antibiotics seen through growing resistance to current forms of antibiotics will peak in 20 years time. Given this why should society maintain a system of innovation that does not respond to its public health needs?
Secondly, ZMapp is one of the experimental treatments given to health care workers from developed countries infected with EVD. The decision to give the treatment to one group of patients over others raised important questions about whether or not it was legitimate to give an experimental treatment and in what circumstances. The decision to prioritise western health care workers over others has been condemned as a racist move. Given, scarcity of medicine in its above report the WHO provides guidelines on who should get medicine and why. Its guidelines are based on human rights considerations amongst other principles. For example, the guidelines identify children and pregnant women, in addition to health care workers as priority groups for treatment. Women are primary care givers and because of this are more often exposed to the EVD when caring for loved ones. Moreover, in affected areas the guidelines specifically prohibit discrimination on the basis of proscribed grounds.
Daniel G Bausch and Lara Schwarz Outbreak of Ebola Virus Disease in Guinea: Where
Ecology Meets Economy PLOS Neglected Tropical Diseases 2014
Isaac Bogoch et al Assessment of the potential for international dissemination of Ebola virus via commercial air travel during the 2014 west African outbreak The Lancet 2014
General Comment No 14 The Right to the highest attainable standard of health (article 12 of the International Covenant on Economic, Social and Cultural Rights), Substantive Issues Arising in the Implementation of the International Covenant on Economic, Social and Cultural Rights UN Doc E/C.12/2000/4 11 August 2000.
Gregg Gonsalves and Peter Staley Panic, Paranoia, and Public Health — The AIDS Epidemic’s Lessons for Ebola The New England Journal of Medicine 2014
International Covenant on Civil and Political Rights Adopted and opened for signature, ratification and accession by General Assembly resolution 2200 A (XXI) of 16 December 1966
International Covenant on Economic Social and Cultural Adopted and opened for signature, ratification and accession by General Assembly resolution 2200 A (XXI) of 16 December 1966
Leigh Philips The Political Economy of Ebola Jacobin online magazine 2014
Universal Declaration of Human Rights Adopted and proclaimed by General Assembly resolution 217 A (III) of 10 December 1948
United Nations Security Council, 7268th meeting Thursday, 18 September 2014, 2.45 p.m. New York UN Doc S/PV.7268 (Provisional)
World Health Organisation Potential Ebola Therapies And Vaccines 5 November 2014 Doc WHO/EVD/HIS/EMP/14.1