Why cannot I? A case that was never heard by a court - All human beings are born free and equal in dignity and rights.

University Degree Subjects allied to Medicine

Why cannot I?

A case that was never heard by a court

All human beings are born free and equal in dignity and rights.

Article 1, The Universal Declaration of Human Rights

Humanity is yet to face a global epidemic of HIV/AIDS

if it fails to join efforts against the disease

Lars O. Kallings, the UN Secretary General's Special

Envoy for HIV/AIDS in Eastern Europe.

We are all born equal in dignity and rights – at least this is what we believe in. How come our “equality” remains mainly on the paper? How come some people enjoy all the benefits of modern life and the latest achievements of the science, while others are obliged to live in hunger, poverty, homelessness, discrimination, and to be exposed to inadequate health care? Are the changes a human body (and sometimes mentality) undergoes during the life to be blamed? If yes, why? If no, what or who is to be blamed then?

While I am not going to answer all those questions above, my main task is to focus on the example of the attitude of health-care providers towards high-risk patients; in particular, patients with HIV/AIDS. To my attention came a case of a young pregnant woman, who was denied access to both state and private health care institutions in the Republic of Georgia. I would like to analyze this case from the perspective of both national and international health laws showing how the decisions of those health institutions conflict with the ethics and laws.

Let us first listen to the person whose problem is to be examined. She is a 28 year old Georgian woman, who had not been informed about her positive HIV status until the late stage of pregnancy. In the interview with a medical doctor from AIDS and Clinical Immunology Research Center of Georgia she said:

The fact that my husband and I are HIV infected came to our knowledge during my pregnancy in 2002. The fetus was already too big and I could not undergo an abortion. My doctor made all efforts to help me to maintain a healthy fetus: conducted antiretroviral therapy in the pre-delivery period, and explained to me that in order to ensure minimum risk to my child a caesarian section would be necessary. However, prior to the operation we faced the fact that no hospital in the city agreed to accept me for the caesarian section. I cannot describe how the whole family of mine felt about that… When you know, that there is a chance and it is out of your ability to grasp this chance... Moreover, these are doctors who oppose you, when the same doctors must devote their whole energy to saving the life! I would cry and reiterate ‘Why cannot I have the operation? Why cannot I?’ I had to deliver my child myself, at home, in a big fear and hopelessness. Fortunately, God saved us, and our child is healthy. I cannot imagine what would I do if my child had been born infected.

What would she do in case her child was born infected or how would that improve the condition of her child is another side of the coin. She was fortunate enough to deliver without complications. But another woman may not be that fortunate…

Denying patients’ health care merely on the basis of their HIV status – that is, discrimination based on status - poses serious health risks to individuals. It is especially egregious when speaking about a pregnant woman, who desperately needs qualified help in order to deliver securely (or at least to minimize the risks of delivery) and to ensure her child’s safety. Denying this help displays a lack of respect and empathy that violates most standards of professional conduct and basic principles of human rights (Gostin and Lazzarini, 1997).

Health care professionals have to follow four key ethical principles: respect for autonomy, beneficence, non-maleficence or minimizing harm, and justice (Beauchamp and Childress, 1994). I consider all these principles were violated in the case above.

According to Exter (2003), the right to health care has been formulated in almost every country. It “may be based either upon international treaties, or on the constitutional rights of a particular state” (Exter, 2003, p. 12). Georgia has ratified a significant number of regional and international human rights instruments, including The Convention on the Elimination of All Forms of Discrimination against Women (in 1994) and International Covenant on Economic, Social and Cultural Rights (in 1994) which means that these international documents obtained legal power once they were ratified and came into force for the state. International Organizations often request states to monitor the fulfillment of the rights that they had agreed to ratify and oblige. Following the reports, the organizations draw their conclusions and give advice to the state concerned. Thus, for example, in its concluding observations in 2002, the Committee on Economic, Social and Cultural Rights of the Economic and Social Council of UN encouraged the Georgian government “to undertake preventive measures against HIV/AIDS, particularly awareness-raising campaigns, in order to prevent the spread of the disease in the country” (UN, 2002).

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Meanwhile, it is worth noting that the law named “Concerning the Prevention of HIV Infection (AIDS)” had been already existed in Georgia. It was worked out and approved by Parliament of Georgia in as early as March of 1995. It delineated the basic principles of the fight against HIV/AIDS in Georgia, the questions of HIV/AIDS surveillance, HIV infected patients medical supervision, the legal and social rights and obligations of the HIV infected patients and medical workers (Tsertsvadze, 2001). However, it was the first draft of the law, and a mixture of both voluntary and mandatory measures of HIV/AIDS control. In 1999 the government experts started to revise the law in order to eliminate or limit all compulsory measures and highlight the importance of HIV/AIDS prevention, education and protection of human rights. Consequently, in 2000 the Parliament passed for reading the amendments to the law (Parliament of Georgia, 2000) and after careful examination the law was adopted by Parliament.

It is worth saying that there are several other national laws concerning health, for instance “Concerning the Rights of Patients” (2000). This is a general law, containing no explicit provision for HIV/AIDS patients or for patients with any other concrete disease. However, the meaning of such a law is exactly its universality and anti-discrimination towards any patients in terms of providing access to professional health care. It must be asked that why then do we need those additional laws that focus on specific medical conditions and diseases such as the law “Concerning the Prevention of HIV Infection (AIDS)”. Such laws mostly reiterate the concept of general laws, shifting the attention towards one specific disease or a group of diseases, and I can only guess why we need them: to ensure that this concrete disease is not omitted from the general law. I observe and link it with the danger of the illness highlighted: usually these are the most dangerous modern diseases, providing a threat to society due to their ability to spread rapidly and widely. But then again, if no mechanisms exist to compel these specific laws, what is their usage?

Rebecca Cook asserts that “those who are at increased risk of death because of governmental failure to provide reproductive and sexual health services” include “women needing life-saving obstetric care or life-saving treatment for incomplete abortions, as well as individuals needing certainly treatment for conditions relating to HIV/AIDS” (Cook et al., 2003, p.159). In our specific case, the woman combines two from the listed three: she is pregnant and needs life-saving obstetric care, and besides she is an HIV positive patient. Thus, she had the double burden of being pregnant and HIV infected. Did she have the right to receive adequate treatment? Certainly (and may be even more than some other patients, if only we can juxtapose and weigh rights as such). Did she have the right to compel health care providers to provide this treatment to her? Undoubtedly, but this would require time. Did she have time? No, she did not, especially bearing in mind that approaching national or international Human Rights defenders require quite a long while.

In connection with this, it is important to examine which key international instruments provide women’s right to health. Let me name and look at them from the point of this particular case.

We will at first need to define health as a human right. As Brigit Toebes (1999, preface) mentions, right to health is not a right to be healthy. The right to health is “a right to certain health services and a right to be safeguarded from certain threats to health for which the State can be held responsible. It concerns situations in which if the State denies its responsibility, infringements of people’s well-being and dignity are at stake”. Furthermore, the right to health is a positive human right, and unlike negative rights, it depends on governmental accommodation and provision beyond individual’s own resources (Cook, 2003, p.152). Thus, individuals depend on government’s affirmative action in order to enjoy their positive rights. Additionally, Toebes (1999) argues, that the right to health is to be considered to form part of the category of economic, social and cultural rights, which are distinguished from civil and political rights. She insists, that there is lack of understanding and weak judicial status of economic, social and cultural rights as opposed to civil and political rights. That seems to be one more reason to elaborate additional international treaties which would explicitly stress the right to health in general or the right to health of people who live with specific medical conditions. Now let me start with the general right to health and then shift to the specific guidelines concerning HIV/AIDS.

The first UN instrument to underline a right to health was the Constitution of the WHO (1946), which stated in its preamble:

Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.
The enjoyment of the highest attainable standard of life is one of the fundamental rights of every human being without distinction of race, religion, political belief, economic or social condition.
The health of all peoples is fundamental to the attainment of peace and security and its dependent upon the fullest cooperation of individuals and States.
The achievement of any State in the promotion and protection of health is of value to all.

And

Governments have a responsibility for the health of their peoples, which can be fulfilled only by the provision of adequate health and social measures.

Georgia is one of the members of WHO, which makes it bound to the obligations provided by the WHO Constitution. The case of a pregnant woman denied access to healthcare shows the state’s negligence to follow its duties as a WHO’s member.

The Universal Declaration of Human Rights (1948) is the next step to draw attention towards the right to health. In its famous twenty-fifth article it says:

Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services…

The International Covenant on Economic, Social and Cultural Rights (1966) is another UN document that requires States “to re recognize the right of everyone to the enjoyment of the highest attainable standard of physical and mental health” and to take adequate steps to achieve the realization of this right including the steps which are necessary for:

(a) The provision for the reduction of the stillbirth-rate and of infant mortality and for the healthy development of the child;

(b) The improvement of all aspects of environmental and industrial hygiene;

(d) The creation of conditions which would assure to all medical service and medical attention in the event of sickness (Article 12).

The meaning and usage of both the Universal Declaration of Human Rights and the International Covenant on Economic, Social and Cultural Rights only exist on paper if the pregnant woman’s need to receive adequate reproductive care is neglected.

The international instruments reviewed so far are gender-neutral and have no explicit indication towards women’s health. As for women-specific rights, the Covenant on the Elimination of All Forms of Discrimination Against Women (1981) pledges states to take all appropriate measures to eliminate discrimination against women in health care:

1. States Parties shall take all appropriate measures to eliminate discrimination against women in the field of health care in order to ensure, on a basis of equality of men and women, access to health care services, including those related to family planning.

2. Notwithstanding the provisions of paragraph 1 of this article, States Parties shall ensure to women appropriate services in connection with pregnancy, confinement and the postnatal period, granting free services where necessary, as well as adequate nutrition during pregnancy and lactation (Article 12).

This is of much use for us in our particular case, as this woman was definitely discriminated in the field of health care. However, according to the Convention on the Rights of the Child (1990), not only she but her child was also discriminated against, when refused access to “appropriate pre-natal and post-natal care for mothers” (Article 24).

Numerous other UN Treaties and Declarations, documents adopted at UN conferences (particularly the Vienna Declaration, the Program of Action of the Cairo Conference and the Beijing Declaration and Platform of Action) and instruments of Regional Human Rights Organizations (including European Social Charter and the Convention on Human Rights and Biomedicine) provide means to support health care of all humans and particularly of women. However, as the scope of this paper is limited, let me now shift towards more interesting for us International Guidelines concerning HIV/AIDS and Human Rights.

Although I do not intend to focus on the issue of HIV/AIDS in Georgia excessively, the case of a pregnant woman which I introduced in this paper cannot be fully analyzed without bearing in mind her positive HIV status, because this was exactly the point of denial of health care services to her. Since the world has learnt about this life-threatening illness, there have been numerous meetings, conferences, consultations, programs, reports, documents, and resolutions about the issues concerning HIV/AIDS. They all convey the concern of International Organizations about the future and destiny of humanity, and attempt to guarantee appreciativeness of human rights of HIV infected people. Additionally, on the 50th anniversary of the Universal Declaration of Human Rights, the Office of the United Nations High Commissioned for Human Rights together with the Joint United Nations Programme on HIV/AIDS carefully elaborated on “HIV/AIDS and Human Rights: International Guidelines” (1998), to “assist States in creating a positive, rights-based response to HIV/AIDS that is effective in reducing the transmission and impact of HIV/AIDS and consistent with human rights and fundamental freedoms” (p.3).

According to the twelve Guidelines introduced, the States have to take many steps to protect HIV-related human rights and to achieve public health goals. Among other things, the States should reform public health laws to ensure that they adequately address public health issues concerning HIV/AIDS and they are consistent with international human rights obligations (Guideline 3), enact and strengthen anti-discrimination policy to protect vulnerable groups, people living with HIV/AIDS (Guideline 5), enact and strengthen legislation to ensure adequate HIV prevention and care information and safe and effective medication (Guideline 6), promote a supportive environment for women (Guideline 8), and ensure enforcement mechanisms to guarantee the protection of HIV-related human rights (Guideline 11). The Guidelines state, that among human rights principles related to HIV/AIDS are the right to non-discrimination, equal protection and equality before the law; the right to life; the right to the highest attainable standard of physical and mental health; the right to social security, assistance and welfare; the right to share in scientific advancement and its benefits; and the right to be free from torture and cruel, inhuman or degrading treatment or punishment (p.41-42). All these rights (presumably with other rights which I have not listed here) have been violated in the case of the pregnant woman who was denied access to health-case in the most dramatic moment in her life.

The last thing I would like to draw attention to is that this case took place in Georgia, and I can only guess that material means were part of the denial of hospitals to provide adequate assistance to that young woman, as they probably feared not receiving adequate remuneration. Being one of the poorest countries in post-soviet space, Georgia has no adequate means to combat the HIV pandemic, if left alone with its own resources. Fortunately, the state has just received the support from several International Organizations, being the main amongst them the Joint United Nations Programme on HIV/AIDS. For instance, they have recently introduced “National Strategic Plan of Action for HIV/AIDS Prevention in Georgia, 2003-2007”, worth 15 million USD. This plan intends “to reduce HIV/AIDS epidemic spreading in Georgia through development and implementation of effective control and prevention interventions in the high priority areas identified by the HIV/AIDS situation analysis”. If only this plan is realized, hopefully there will not be other cases like that described above.

As particularly for this case, more often than civil and political rights, economic, social and cultural rights contain programmatic elements, requiring States to take positive measures (Toebes, p.6). However, these “positive measures” ultimately force the State to provide material support for the rights, and if they lack the means to provide this support, how can we blame them for breaching the promises they had made to International Organizations?

Despite this, I am utterly sure the State had to SOMEHOW ensure provision of appropriate medical treatment for HIV/AIDS patients, especially for the pregnant woman, who desperately needed access to medically indicated care. Otherwise the whole meaning of living in a community (and not alone by-oneself in some secluded area) loses any sense at all.

Thus, in this paper I attempted to show where to find the means for national and international support for the right to health in general and for the case provided in particular. Discussion of both national and international health laws shows that all of them were violated by denial of access to health care services for a pregnant woman with positive HIV-status. Violations occurred in different areas of concern both from the point of view of being pregnant (especially with viable fetus) and being HIV-positive. While this particular woman was fortunate enough to escape further medical complications, this must not become the precedent for others, who might not be that fortunate. Pregnant women as well as all women and men must not be discriminated on the basis of their positive HIV status. Being aware of introducing new laws and international documents that deal with concrete situations, I suggest implementation of specific strategy for HIV-positive pregnant patients, who need access to special hospital facilities (such as surgical department). Providing these facilities to them would ensure their enjoyment of human rights and would guarantee maximum reducing the risk of exposing the menace of contamination to others.

For the last words I want to refer to the journalist who recorded the interview from that infected woman. He said: “If we don’t care for the people living with HIV/AIDS, how can we oblige them to care for us and not to perpetrate the action, which would infect healthy people?” These words are worth becoming a beacon for our understanding of the surrounding world so that the notions provided by the Universal Declaration of Human Rights would not be discriminated against just because of acquired disease, against which not a single person on the earth is guaranteed.

Lela Purtskhvanidze

Department of Gender Studies

12 December 2003

References:

AIDS and Clinical Immunology Research Center of Georgia (2003). Interview with a young HIV-positive woman. Unpublished manuscript.

Beauchamp, T., & Childress, J. (1994). Principles of Biomedical Ethics. New York: Oxford University Press

Cook r., Dickens B., & Fathalla M. (2003). Reproductive Health and Human Rights. Oxford: Claredon Press

DAW. (1981). The Covenant on the Elimination of All Forms of Discrimination Against Women. Retrieved December 17, 2003, from http://www.un.org/womenwatch/daw/cedaw/

Exter, Andre den. (2003). The Rights to Health Care in International Law. In A. Exter and J. Sandor (Ed.), Frontiers of European Health Law, Yearbook 2002 (pp.12-26). Rotterdam: Erasmus University Press

Gostin, Lawrence O., & Lazzarini, Zita. (1997). Human rights and Public Health in the AIDS Pandemic. New York, Oxford: Oxford University Press

Office of the United Nations High Commissioner for Human Rights and the Joint United Nations Programme on HIV/AIDS (1998). HIV/AIDS and Human Rights: International Guidelines, Geneva, 23-25 September 1996. New York and Geneva: United Nations

Parliament of Georgia (2000). Daily News, November 8th, 2000. Retrieved December 17, 2003, from http://www.parliament.ge/WHAT'S_NEW/PRESS/2000/november/081100.htm

The Joint United Nations Programme on HIV/AIDS. National Strategic Plan of Action for HIV/AIDS Prevention in Georgia 2003-2007. Retrieved December 17, 2003, from http://www.unaids.org/EN/other/functionalities/document.asp?href=http%3A%2F%2Fwww%2Eunaids%2Eorg%2Fhtml%2Fpub%2FTopics%2FNSP%2DLibrary%2FNSP%2DEurope%2FNSP%5Fgeorgia%5F2003%2D2007%5Fen%5Fdoc%2Ehtm&PDFHref=&FileSize=428544

Toebes, B. (1999). The Right to Health as a Human Right in International Law. Antwerpen, Groningen, Oxford: Intersentia

Tsertsvadze, T. (2001). Statement by Dr. Tengiz Tsertsvadze at Twenty-sixth Special Session of the United Nations General Assembly on the Problem of Human Immunodeficiency Virus/Acquired Immunodeficiency Syndrome (HIV/AIDS) in All Respects. Retrieved December 17, 2003, from www.un.org/ga/aids/statements/docs/georgiaE.html

UN. Treaty Collection. Retrieved December 17, 2003, from untreaty.un.org/

UN. (1948). The Universal Declaration of Human Rights. Retrieved December 17, 2003, from http://www.un.org/Overview/rights.html

UN Economic and Social Council. (2002). Concluding Observations of the Committee on Economic, Social and Cultural Rights : Georgia. Retrieved December 17, 2003, from http://www.unhchr.ch/tbs/doc.nsf/(Symbol)/E.C.12.1.ADD.83.En?Opendocument

UNHCHR. (1966). The International Covenant on Economic, Social and Cultural Rights. Retrieved December 17, 2003, from http://www.unhchr.ch/html/menu3/b/a_cescr.htm

WHO. (1946). Constitution of World Health Organization. Retrieved December 17, 2003, from http://w3.whosea.org/aboutsearo/pdf/const.pdf

This interview was kindly sent to me by the AIDS and Clinical Immunology Research Center of Georgia in December 2003. Translation is mine.