1. Council of Europe seeks Comments on Biomedical Research Draft Protocol
Apart from the work of its High Commissioner and the European Commission against Racism and Intolerance, when we think of the Council of Europe we probably think of regional human rights treaties. The Convention on Human Rights, the Social Charter, the Convention for the Prevention of Torture and the Framework Convention for the Protection of Minorities all come to mind. There is a treaty that is less well known of interest to the medical community, however. It is the 1997 Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine.
Unlike most human rights treaties with which NGOs concern themselves, the Convention on Human Rights and Biomedicine does not have a treaty monitoring body able to receive periodic reports on state party implementation or complaints from individuals or NGOs when they perceive a violation. There is a Steering Committee on Bioethics; but its powers are limited to considering amendments to the treaty or requesting advisory opinions of the European Court of Human Rights on the legal effect of the treaty. Only the Secretary General of the Council of Europe may require states parties to explain how their laws ensure proper implementation of the treaty’s provisions.
In 1998, an additional protocol on cloning was adopted. Now, a further protocol – on biomedical research has been drafted. The Council of Europe has requested views on the draft. These should be sent to Professor Sir John Pattison, Director of Research and Development at the Department of Health, by December 31. Copies of the draft and an explanatory report should be available from the Department of Health or the Council of Europe. The UK is not a party to the treaty.
Although human rights groups do not devote much of their time to human rights agreements that lack a clear and regular monitoring procedure or source of remedy, PHR-UK believes that its members may have a unique contribution to make to the work on the draft protocol. We welcome information and comments on this from members; but we ask for these by December 7th to enable us to process them during the holiday period.
2. New Publications
All of these publications are available in paperback.
The Medical Profession and Human Rights: Handbook for a Changing Agenda (2001) The British Medical Association, London; Zed Books.
This is an astonishing collection of 20 chapters on every human rights issue that is likely to confront today’s health practitioners. Its range of subjects and depth of scholarship is immense. Yet it is written in a readable style, that makes good use of headings, sub-headings, bullet points and boxes. Each chapter contains a set of endnotes as well as a summary and recommendations. Topics range from ethics through torture, forensics, organ trade, refugees, rehabilitation to such topical issues as the right to health, truth commissions as an alternative to full “justice” and chemical and biological weapons. There are very few experts who will not learn something from this handbook, and it is likely to find a place on many clinic shelves in the coming months.
Istanbul Protocol: Manual on the Effective Investigation and Documentation of Torture and Other Cruel, Inhuman or Degrading Treatment of Punishment (2001) Office of the High Commissioner for Human Rights Professional Training Series No. 8, Geneva; United Nations.
The UN has issued a set of international guidelines for medical practitioners, advocates and adjudicators on documenting torture. It is the result of a lengthy collaboration between experts from many countries, not least PHR-UK’s own Michael Peel, who undertook a final editing of the text. The Protocol contains detailed chapters on relevant international standards, relevant ethical codes, legal investigation of torture, general considerations for interviews, physical evidence of torture and psychological evidence of torture. There are valuable annexes setting out the principles for effective investigation of torture, diagnostic tests – including the use of radiological imaging and biopsies, anatomical drawings for the documentation of torture and guidelines for the medical evaluation of torture. Torturers go to great lengths to deny that they torture. Anyone following this manual should be in a strong position to rebut those denials before any human rights body. The manual is available in all the official languages of the UN.
International Law, Antonio Cassese, (2001) Oxford; Oxford University Press.
All of us who take human rights seriously come up against international law sooner or later. When we do, we probably wish for some easy-to-read guide to international law, ideally written by a human rights expert. Well, such a book is now available. The text follows a similar format to Cassese’s 1986 International Law in a Divided World - a book this reviewer used to sneak into boring law lectures and read during class. Professor Cassese, back at the University of Florence after spells as Chair of the Council of Europe Committee for the Prevention of Torture and President of the International Criminal Tribunal for the Former Yugoslavia, has produced a superb introduction. His book, not only describes the main international legal institutions, but examines their origins and performance.
In addition to covering the origins and foundation of the international community and the creation of and enforcement of international law standards, the book deals with a number of contemporary issues. These include the UN’s role, use of armed force, development, the environment and human rights. An unusual feature of the text is its comparison between traditional law, rooted in State sovereignty and newer law based upon norms accepted by the international community of states as a whole. Cassese is best known to students of human rights for his description of the work of the European Committee for the Prevention of Torture [Inhuman States (1996) Oxford; Polity Press]. International Law is written in the same inimitable style, and it is certain to be enjoyed by many non-lawyers who seek an introduction to the subject.
3. UK Government Reports to UN Committee on Economic, Social and Cultural Rights in the Spring of 2002
The UK is again reporting to the UN on its implementation of the 1966 Covenant on Economic, Social and Cultural Rights. This will be its fourth periodic report to the Committee. The last occasion, in November 1997, saw the new Labour Government discuss a report prepared by its predecessors. On that occasion, NGOs including Oxfam, the Committee on the Administration of Justice and the Women’s League for International Peace and Freedom, told the Committee of their concerns with poverty levels, which were caused by low incomes and by access to employment. They also raised the issue of the treatment of women, indigenous ethnic groups and the poor by the social security services.
The Committee invited the UK to discuss the following issues on the right to health contained in Article 12:
The impact on universal access to health care of hospital closures, reduction in nursing staff and increase in hospital administrators;
Steps taken to develop an integrated and coherent health strategy which will specifically address inequality and provide greater access to health services in Northern Ireland;
The method used by the Government to monitor any improvement in the health of Travellers as a result of recent local health authority initiatives;
The measures adopted to ensure proper nutrition in pregnancy and pre-conception care to combat the UK’s high incidence of low birth-weight;
The extent to which individuals in need of urgent medical attention but lacking documentation are cared for without being held financially responsible;
The numbers of persons suffering from AIDS as well as HIV infection, the care they receive and the measures taken to avoid discrimination, particularly in health, employment, education and housing.
In their conclusions, the Committee expressed concern that waiting times for surgery could be eighteen months or longer. It said that this was unacceptable and called for immediate steps to reduce it. The Committee went on to express the view that the continuation of this situation would call into question whether the UK had made its best efforts to satisfy the provisions of Article 12 of the treaty.
The Committee also recommended that its concerns should be widely publicised by the Government, and addressed in the next periodic report. It said that the Government should consider making a human rights impact or assessment statement of every proposed legislative or policy initiative, in the way that environmental impacts are identified.
The Committee’s approach to the UK is likely to be different in 2002. The Government will have been in office for five years, and should be in a greater position to help the Committee evaluate its compliance with the Covenant than it was in November 1997. In addition, the UK Government will have to take into consideration the Committee’s General Comment on the Right to Health of May 2000, in which the need for clear benchmarks was identified. The Committee is also expected to enquire into the percentage of the population using private health services instead of the NHS, and how the Government monitors the quality of private health services. Concerns about prison conditions, where bad sanitary conditions and high suicide rates have been reported, are also likely to be raised.
PHR-UK, as the prime NGO mover in the development of the General Comment on the Right to Health, wishes to take a close interest in the UK’s fourth periodic report to the Committee, and welcomes data and other assistance from its members. Offers of help should be sent to the Chair, Dr. Peter Hall, whose address is on the cover of this Newsletter.
4. Recent Activities
In October 2001, Bernie Hamilton and Michael Peel attended a Training Session for Sudanese Human Rights Advocates, held in London by Redress. Participants were very well informed and so the level of discussion was extremely high, with everyone working hard. Topics included the principles of international law, documenting torture and the use of domestic, regional and global mechanisms to seek accountability for violations. Dr. Peel conducted a session on medical evidence of torture. Others involved included Camille Giffard, of Essex University, Christopher Hill of Amnesty International and Fiona McKay of the Kurdish Human Rights Project. Carla Furstman of Redress directed the training session.
Also in October 2001, Bernie Hamilton and Gill Hinshelwood attended a conference organised by the British Red Cross in London on Women and War: Perspectives on Protection and Assistance. Bernie Hamilton arranged for seven medical students taking the Human Rights and Health in an International Context module to attend the morning session. This included a stimulating presentation by Patricia Viseur Sellers, who is the Legal Adviser for Gender Related Crimes in the Office of the Prosecutor for the International Criminal Tribunal for the Former Yugoslavia (ICTY) and by Christine Chinkin, a Professor of International Law at the LSE, whose amicus brief to the ICTY on witness protection was cited in the Tadic case. The afternoon was largely given over to workshops. Dr. Hinshelwood led a workshop on sexual violence during armed conflicts. The conference attracted about 150 participants.
A RIGHT TO PALLIATIVE CARE - LESSONS FROM UGANDA
After completing a course in Human Rights at Birkbeck University in May last year I was lucky enough to travel to Geneva to observe the work of The Committee on Economic, Social and Cultural Rights. My timing could not have been better as my visit coincided with the discussion of the General Comment on the Right to Health.
Physicians for Human Rights had a huge role to play at every stage in the formulation of this general comment but one point I felt very strongly about was the inclusion of access to palliative care services. The document is designed to be used as a bench mark for assessing service provision and in the context of those developing countries facing the worst of the HIV/AIDS epidemic I felt this to be particularly relevant. After a very lively discussion with the special rapporteur working on the document I was delighted to see palliative care and rehabilitative care recognized in the final document.
Over the last six months I have been working for two organizations, Hospice Uganda and Mildmay International in Kampala Uganda. Reading the General Comment and applying it in a country where only 57 % of the population will see any health professional in their lifetime sheds new light on the concepts of availability, accessibility (both physical and financial), cultural acceptability and quality as outlined in article 12 of the general comment. In addition the extreme demands placed on the healthcare systems in the developing world by the HIV/AIDS epidemic highlight the hugely different contexts in which these international documents are being applied.
Uganda has lead the way in Sub Saharan Africa in how it has dealt with the epidemic and the extent of government support and openness can only be applauded. However, with a current infection rate of 8% the problem still remains a huge health and consequently economic burden to the country.
What is also quite unique in Uganda is the inclusion of Palliative Medicine in the Ministry of Health’s five year plan and in the minimum package for HIV/AIDS care proposed by the Ugandan AIDS Commission. Both Hospice Uganda and Mildmay have been greatly involved in promoting the importance of Palliative Care and have established both clinical and educational programmes throughout the country.
Hospice Uganda was founded in 1993 to promote the initiation of Hospice in those countries in Africa who have not yet the assistance of Palliative Medicine. The service offers palliative care to patients with cancer and HIV/AIDS by means of a team of doctors and nurses visiting patients in their own homes. To date in Kampala, the capital, they have looked after 2710 patients and currently have 230 on the programme. Two separate services in the districts have also been initiated. Hospice has had a huge role to play in improving access to oral morphine and in the education around it’s use. Mildmay International was invited by the Ugandan Government in 1997 to establish an HIV/AIDS clinical and training centre in Kampala. The centre is an outpatient service offering palliative and rehabilitative care for patients with HIV/AIDS but combined with curative treatments including antiretrovirals. In addition there is a large training centre hosting courses for health and non-health professionals from Uganda and many other African countries.
The introduction of antiretrovirals in this country has hugely changed the role of Palliative Medicine in HIV/AIDS care but where antiretrovirals are not readily available to all, palliative care principles combined with the management of opportunistic infections or AIDS related malignancies, have the potential to have a huge impact on patients’ quality of life.
Rose, a patient with Kaposis’ sarcoma (KS) is a good example of this. Rose presented with a large palatal KS lesion that was extremely painful and was preventing her from eating without extreme discomfort. Over the last few weeks she had become very weak and depressed. She had managed to travel to Kampala to stay with her brother from her home 6 hours away. Neither she or her family were able to afford the cost of having a biopsy or the combination chemotherapy or radiotherapy that was offered at the university teaching hospital. From the hardship fund available she was able to be treated with single agent vincristine chemotherapy but before starting chemotherapy she was commenced on oral morphine and topical steroids applied to the lesion in her mouth.
Both these measures improved things significantly and before starting chemotherapy she started to be able to eat and drink. She was also seen by the counsellor at the unit which resolved a number of issues around her diagnosis and how she would start to discuss things with her children. With 4 cycles of treatment she achieved significant reduction in tumour size and at this point decided to return to be with her family and children.
The experience of the last six months has certainly confirmed my view that there should be a “right” to palliative care particularly in resource poor settings. This should in no way detract from impressing upon the need for improved access to diagnostic and curative services, but while the whole debate around access to antiretrovirals continues, good symptom control with drugs that are available should not be forgotten. My hope is that more countries that are facing the worst of this crisis take the lead from Uganda and with the help of organisations such as Hospice Uganda and Mildmay International see for themselves what a huge impact on peoples lives can be made by palliative care services.
Committee on Economic, Social and Cultural Rights General Comment 14- The right to the highest attainable standard of health. www.unhchr.org
Hospice Uganda. www.hospiceafrica.co.uk
Mildmay International. www.mildmay.org.uk