Human rights in Ukraine 2009 – 2010. 18. Rights of people living with HIV/AIDS
The HIV infection rate among adult Ukrainian population is one of the highest in Europe. Under the criteria, formulated by Joint UN Program on HIV/AIDS and World Health Organization, the HIV/AIDS spread in Ukraine is classified as concentrated epidemics.
By 2009, 340 thousand HIV- infected people over 15 years of age lived in Ukraine. It amounts to 0.86 % of the whole population in this age category. According to official data, in 2009 54 persons were diagnosed with HIV, 12 persons – with AIDS, and 7 persons died daily of AIDS-related diseases. The updated HIV/AIDS information shows, that at the beginning of 2010 360 thousand HIV- infected people over 15 years of age, lived in Ukraine.2
The Constitution of Ukraine guarantees all Ukrainian citizens right to medical care, including the right to accessible health care and right to receive adequate medical help. The right to adequate medical care is a social right, the exercising of which is specific and depends on economic capabilities of the state. However, under the international obligations, undertaken by Ukraine, the states must do their best to let citizens exercise all the social rights.
Main challenges, encountered in medical institutions by people living with HIV/AIDS:
Violation of voluntary HIV testing – right to freely make decisions on HIV testing and further treatment;
Economic constraints– some medical institutions demand payment for their services and extort money from the patients;
Discrimination – people living with HIV/AIDS are limited in their access to medical care; they are often refused admittance to medical institutions, surgical interventions, and dental services; cannot obtain information concerning their condition;
Stigmatizing – social isolation of HIV/AIDS patients, rejection and avoidance of such persons by others; mandatory testing without their consent, violence against people living with HIV/AIDS.
On December 23, 2010 the fundamental law regulating the rights of the HIV-positive and people with AIDS “On preventing AIDS and social protection of the population” was amended. Now it is called “On counteracting the spread of HIV-related diseases and legal and social protection of people living with HIV”. This law repealed the benefits, i.e. free transportation to the place of treatment and back for the HIV-positive, and denied them the right to isolated living space. The amendments concerning the disease-related information are addressed further, in the respective section.
Preventive measures are regulated by the law of Ukraine “On approving national program for HIV infection prevention, treatment and care of the HIV-positive and people with AIDS for the years 2009 – 2013” № 1026-VI of February 19, 2009 and the respective Cabinet of Ministers’ Decree № 452 of June 25, 2009 “On approving the measures aimed at implementation of the national program for HIV infection prevention, treatment and care of the HIV-positive and people with AIDS for the years 2009 – 2013”.
This Decree stipulates, in particular,
- providing sterile disposable medical equipment and means of individual protection for the injective drug users ( hereinafter – IDU);
- implementing the model of integrated services for IDU in treating HIV infection and tuberculosis.
The drug users are offered preventive services within the framework of harm reduction programs implementation. Most often drug users can find these services in the needle-exchange stations, during HIV-testing or in mobile labs. But these same places are often raided by militia operatives, who detain and use IDU with the goal of obtaining information, recruiting them, fabricating criminal cases, needed to meet the quotas of successful crime prevention etc.
Thus militia officers (“Berkut” special unit) detained a couple N. at the needle-exchange station, wrote down a protocol on used needles confiscation, “found” two witnesses, who testified that N. family were using drugs near the needle-exchange station. Then for the whole year the N. have been blackmailed, forced to prepare and sell the drugs, as well as to bring raw material for the drug production (poppy straw); all their money was taken away from them. After the N. couple joined the substitution therapy program, they were given legal assistance (the internal service of Ministry of Interior was contacted), the situation changed for the better and “Berkut” people disappeared from their lives.
Divulging the information on HIV-status
Ukrainian legislation prohibits divulging the information on HIV status of a person, considering this information confidential and establishing civil and criminal liability of medical staff for divulging this information. The Law of Ukraine “On counteracting the spread of HIV-related diseases and legal and social protection of people living with HIV”, the Cabinet of Ministers’ Decree № 2026 of December 18, 1998, as well as the Ministry of Health Order № 415 of August 19, 2005 “On improving the system of voluntary counseling and HIV-testing” are specific legal acts prohibiting the divulging of information on HIV status. The normative basis in place ensures confidentiality and makes divulging of personal information on HIV status unacceptable. Nevertheless, the divulging of information by medical staff occurs pretty often. Some out-patient clinics have a practice of writing “HIV” on a patient’s medical history; the doctors discuss at large patients’ HIV infection found in the course of the examination, without even lowering their voices, or share this information with friends. These actions lead to serious complications in the HIV-positive people’s life. The individual concerned faces all sorts of humiliations, other people stop to communicate with him/her, he/she is fired from work, denied medical attention, or, on the contrary, given medical help with most demonstrative precaution measures.
Thus, P., a resident of Horlovka (Donetsk oblast’) delivered a baby at the time, when she was diagnosed with HIV. Mother and child were registered in the municipal hospital № 2 with the respective diagnosis. A nurse, employed by the hospital, met P. at the bus stop and asked how she was feeling. Having heard that everything was OK, the nurse retorted that it was impossible, as both mother and son were HIV- infected. The whole conversation took place with P.’s acquaintances present. Spreading the information resulted in family ostracizing by the neighbors, children and their parents at school. Nevertheless, the court, that judged P’s claim against the nurse, did not find grounds for establishing moral damages for the aggrieved family.
On August 4, 2010 HIV- infected O. was brought to intensive care ward in Zaporizhzhya. Talking to a physician, O. told him about his HIV-positive status. Since then he noticed biased attitude on behalf of the medical staff. O.’s supervisor, on learning about his status, came to the hospital. There the physician gave him an excerpt from the O.’ medical history, which said that he had been using drugs for many years, was HIV- infected, suffered from hepatitis, and participated in methadone program. When this information was given to the supervisor, O.’s brother, unaware of O’s HIV status, was present. When O. returned to work after treatment, colleagues started to avoid him, stopped talking to him or even greeting him. O. had to resign as he could not keep his job under the circumstances.
Because of the physician’s actions, O. suffered a serious mental trauma, was discriminated against by family and colleagues, and suffered moral damage due to impossibility of leading active social life and breach of normal relationship with his relatives. After negotiations between the attorneys and the physician the latter paid O. damages in the sum of 5000 UAH and publicly apologized to him.
Under the Law of Ukraine “On counteracting the spread of HIV-related diseases and legal and social protection of people living with HIV”, medical examination with the goal of establishing HIV is carried out only with the consent and on the request of the person in question and is anonymous. The examination results, whether positive or negative, are confidential and classified as medical secret. The divulging of this information is permitted only to the person in question and to the his/her legal representatives, health care institutions, prosecutor’s office, investigation and inquiry agencies and courts in the cases, spelled out in the Law of Ukraine.
Meanwhile, till the end of 2010, some state agencies, which are not the part of the aforementioned list, requested mandatory examination and information concerning HIV status of individuals in certain official procedures, without reasonable justification. For example, when foreign nationals applied for temporary residence permits, the Ukrainian migration service demanded that they produce certificate on their HIV status. The examination preceding the obtaining of the certificate was carried out for certain fees. This requirement is not stipulated either by Ukrainian legislation, or by any by-laws. However, without such certificate migration service refused to grant the temporary residence permit, even in cases when such permit was due. Without the permit the foreigners are not allowed to stay in the territory of Ukraine.
Besides, the MIA of Ukraine departments insist on collecting information about the substitution therapy patients, many of whom are HIV- infected. In 2009-2010 the International HIV/AIDS Alliance in Ukraine, as well as local NGOs several times pointed out these violations to MIA and Procurator’s General Office of Ukraine, but the situation has never changed.
On January 18, 2011 the MIA of Ukraine Department of Drugs-Fighting ordered the heads of territorial divisions to collect information on drug users treated within the framework of substitution therapy programs, specifically, on HIV status of those patients. International HIV/AIDS Alliance was informed that in compliance with this order, MIA operatives by January 22, 2011 promptly collected the required information, sending out illegal requests to the medical institutions, carrying out the so-called “surveys” for the patients and their families in drug-clinics or at their homes all over Ukraine. To that end, they used intimidation and pressure. This gross violation of the confidentiality right caused fast response on behalf of the NGOs and International HIV/AIDS Alliance, which sent an open letter to the President of Ukraine and also approached the international organizations and Global Fund to Fright AIDS, TB and malaria, but the situation remained unchanged.
Under the new law provisions of December 23, 2010 the information on HIV positivity can be revealed only by the court’s decision, except in cases, when it is divulged to the person, whom it concerns or to medical professionals. However, their practical implementation is still pending, as the procedural legislation does not define relevant court proceedings.
At the same time, under the new version of the law, physician is authorized to divulge the information to the HIV-positive partner without the patient’s consent, if the patient is reluctant to do so.
If the HIV status information is divulged under different circumstance, article 132 of the Criminal Code of Ukraine establishes criminal liability for this action and defines the potential perpetrators of patients’ human rights’ violations: health care providers and supportive staff of the medical institutions, who obtained the patients’’ information by virtue of their professional duties. Despite the fact that such divulging occurs very often, not a single medical worker has been yet brought to criminal liability under this provision.
A family with two HIV-positive children resided in a village in Zhytomir oblast’. The children were registered in the raion clinic. A neighbor worked as a nurse in this clinic. She learnt about the children’s HIV status by chance, and shared the information with all the village residents. The neighbors started to abuse the children in all possible ways. They forbade their own children to be in touch with them. The sick children’s parents filed a complaint with the prosecutor’s office requesting a criminal law-suit against the neighbor. The neighbor pled not guilty and proceeded, together with her husband, to intimidate the claimants. The parents decide to give up and moved to another place of residence.
Article 135 of the Criminal Code of Ukraine contains is most instrumental in the context of protecting the rights of HIV- positive children.
Namely, part 1, article 135 of the Criminal Code of Ukraine provides the definition of leaving in danger – willful leaving of a person without help, if he/she remains in a condition dangerous to life and is unable to ensure his/her self-preservation due to young age, old age, illness or helpless condition and where the one, who left this person without help, was obliged to care after this person and was able to provide help to him or her, and where this one himself put the victim in a condition dangerous to life, without assistance a person whose condition is life-threatening and who has no possibility of using self-preservation measures due to minority, old age, disease or other helpless condition, if the person who abandoned them was obliged to take care of the person and was able of providing assistance, and also in case when person in charge has created the dangerous situation for the victim. This violation is penalized by up to two years of imprisonment or custodial restraint.
This law is applicable to negligent parents or guardians, who do not care for their minor children, neither treat them nor give them medication etc. Currently there are many cases in Ukraine, when parents for various reasons (religious being not the least of them) refuse to treat an HIV-positive child or to use antiretroviral therapy
Obviously, such attitude endangers a child’ life. Medical providers must explain to the parents the consequences of their negligence and talk with them about their liability for their actions.
HIV contamination due to negligent performance of professional duties
Article 131 of the Criminal Code of Ukraine, addressing negligent performance of professional duties resulting in a person’s contamination with HIV or other incurable disease virus, becomes especially topical in the context of AIDS epidemics. This felony involves criminal liability of medical, pharmaceutical or other specialists who perform their duties neglectfully or unscrupulously, thus causing individual’s contamination with HIV or other incurable disease virus, threatening for human life. This crime can be penalized with up to three years’ custodial restraint or imprisonment with prohibition to occupy certain positions or to perform certain functions for certain period of time. If two or more persons were contaminated, the culpable party can be imprisoned for the term between three and eight years with prohibition to occupy certain positions or to perform certain functions for up to three years’ term.
Although most relevant to AIDS epidemics in Ukraine, Article 131 of the Criminal Code of Ukraine is difficult to implement, because the proof of medical workers’ culpability often depends on timely identification of HIV-infection. Unfortunately, the infection can manifest itself after prolonged period of time, which complicates inculpatory evidence.
Under article 17 of the Law of Ukraine “On counteracting the spread of HIV-related diseases and legal and social protection of people living with HIV”, persons contaminated with HIV as a result of medical manipulations, are entitled to judicial compensatory damages from the guilty party.
Transfusion of blood or its components, the use of other biological fluids, cells, organs and tissues for medical purposes is allowed only after mandatory laboratory tests of donors’ blood for HIV infection are done. To prevent the HIV infection spreading through donors’ blood, its transfusion is ordered exclusively when it is the only means of saving human life. In other words, if a patient’s life is threatened so that he/she can be saved only by immediate blood transfusion and no pre-tested donors’ blood is available on the spot, the transfusion of blood, checked for HIV infection by means of express test, is allowed upon patient’s (or his/her official representative’s) consent. If obtaining informed consent from the patient or his/her legal representative is not feasible, the decision on blood transfusion is made by the doctors’ conference. If such conference cannot be convoked, then decision is made by the physician providing medical care. The fact of transfusion of blood, checked for HIV infection by means of express test, with patient’s (or his/her official representative’s) consent should be reflected in writing in the medical history of the patient, while the blood specimen is immediately sent to the laboratory for testing.
On June 22, 30 and July 4, in neonatal pathology ward of Mariupol city hospital №3, fresh frozen plasma, obtained on May 31 from the HIV-positive donor, was transfused to three newborns. The medical staff, including deputy head physician of the municipal blood transfusion station, upon learning that HIV was found in donor’s blood, did nothing to inform the head physician of the station or to eliminate the contaminated blood from the blood bank and database, or to warn the employees of the city hospital №3, who used the plasma from infected donor for transfusion. The criminal proceedings on this fact were instituted on August 30, 2005. Court passed two rulings in the case: in the first the party, guilty of the newborns’ contamination, was acquitted (the acquittal was repealed on the aggrieved party claim); in the second the judge remanded the case for further investigation. Presently the inquiry is going on.
Denial of medical help
Rather often HIV-positive people are denied medical help by the medical institutions, despite strict prohibition of such denial, spelled out in article 16 of the Law “On counteracting the spread of HIV-related diseases and legal and social protection of people living with HIV”.
In actual practice many health care providers refuse to provide medical help to HIV-infected patients under various pretexts. Most common among these is the alleged lack of means of individual protection and prevention. The patients are most often denied help by dentists, surgeons and ER physicians. Sometimes the doctors’ explanations are fully justified, because medical professionals handling blood have no way of efficiently protecting themselves from contamination.
The State Penitentiary Department of Ukraine faces most serious problems concerning the HIV-positive examination and antiretroviral therapy. Numerous accidents concerning the HIV-positive in remand prisons and correction facilities demonstrate lack of the necessary equipment or medical drugs. Both prison and department administration, and sometimes even prosecutor’s office, responding to complaints maintain that the HIV-positive examination is not feasible. And no treatment is possible without prior examination. Here is an example from Novhorod-Siversky (Chernyhyv oblast’).
P.Shcherbyna, who has been HIV-positive for 10 years, has been an inmate of remand prison since August 2010. Despite his numerous complaints, e.g. that he had lost all his teeth, suffered from dizzy spells and constant fever, he was never examined or offered medical help while in custody. In its last response, the prosecutor’s office stated that no HIV blood test was possible.
In other cases, the institutions under the State Penitentiary Department refuse to provide treatment for HIV infection, referring to contra-indications for use of antiretroviral therapy if other treatment is administered. These rejections sometimes are not justified, so that antiretroviral therapy is not offered even after the completion of all other treatments.
К., who stayed in a correction facility №13 and had the 4th, terminal stage of HIV and HIV-related tuberculosis, was treated only for TB. The treatment, unaccompanied by antiretroviral therapy was rather inefficient, as the immune system of the patient was very weak. When K. asked for antiretroviral therapy, the facility administration answered that antiretroviral therapy is contra-indicated for him due to his aggravated condition and setting in of opportunistic infections. Meanwhile, under the standing order of the Ministry of Health of Ukraine, this diagnosis does not contra-indicates the use of antiretroviral therapy. Only a liver disease or other indicators related to it can be cause contra-indication. The said indicators for K. were normal. Therefore, the refusal to start antiretroviral therapy was completely ungrounded. Besides, the facility administration referred to the lack of vacutainers as another reason for denying help to the HIV-positive inmates.
It is noteworthy that the rights of people living with HIV/AIDS are violated most often due to the lack of relevant legal knowledge among medical workers and Ukrainian public at large.
A Kirovohrad resident gave birth to a daughter. On the fifth day she, together with the newborn, was moved from delivery ward to the hospital. After her admission the hospital physicians became aware of the fact that the woman had HIV infection. Immediately the doctors forbade her to see her daughter and then ordered her to leave the hospital. For a month the woman kept trying to restore her own and her child’s rights: she complained to Kirovohrad oblast’ Health Department and to the prosecutor’s office, but received negative response. Then she filed complaint with the Ministry of Health of Ukraine. The Ministry checked the facts, referred to in the woman’s complaint and established the guilt of the medical staff. The Ministry of Health decision enabled the woman to file a claim with the court, demanding compensatory damages for the damnification. Moreover, the HIV diagnosis proved wrong and the woman was completely healthy. The court proceedings lasted for eight months. Finally the court decided that both her and her child’s rights have been violated and ordered Kirovohrad oblast’ Health Department to pay her compensatory damages.
– Encouraging judges and attorneys to promote legal culture on HIV/AIDS-related issues with the goal of protecting the rights of people living with HIV/AIDS and reducing stigmatization and discrimination they suffer.
– Introducing the training system and incentives for judges and attorneys, involving them in the protection of rights of people living with HIV/AIDS and other vulnerable categories.
– Reviewing the current normative acts concerning the stay of the HIV-positive children in organized groups and boarding schools; making them inter-sectoral and interdepartmental.
- Prohibiting disease-related discrimination by the Ministry of Health orders.
– Reviewing instructions and requirements for social assistance and pensions to the people living with HIV/AIDS ; their re-socialization and rehabilitation.
– Revising taxation rules for charity donors and sponsors from private companies to create incentives for charities aimed at improving care and support services for the HIV-positive.
–Introducing the institute of social workers for people living with HIV/AIDS in the medical institutions and in the correction facilities ( having sufficient number of social workers and psychologists on staff).
– Increasing the funding of care and support services from the budget of the Ministry of Ukraine for the Family, Youth and Sports.
– Developing state-of-the-art training programs for the training and upgrading of specialists, social workers and psychologists in the focus of care and support for people living with HIV/AIDS; including these programs in the various educational establishments’ curricula (the Ministry of Health, the Ministry of Education and Science, Ministry of Ukraine for the Family, Youth and Sports, the Ministry of Labor and Social Policy, the Ministry of Justice).
– Developing and implementing a special optional course (12-16 hours) addressing the rights of people living with HIV/AIDS.
– Empowering people living with HIV/AIDS, so that they could participate in planning, implementing and assessing the care-giving and support services.
– Devising and implementing the system of care-giving and support services, including national standards, staff, material and technical basis, interdepartmental network of the agencies offering these services.
– Actively involving and making use of the Ombudsman’s institute.
– Implementing measures aimed at reducing stigmatization and discrimination and increasing public and professional tolerance and understanding for the people living with HIV/AIDS.
– Equipping medical professionals with all the necessary means for protection against HIV contamination.
– Authorizing the Ministry of Health to make the law provisions, prohibiting to demand payments for medical services provided to people living with HIV/AIDS, to all the heads of medical institutions.
1 Section prepared by Aygul Mukanova, Institute for legal studies and strategies
2 Brief survey of status of HIV/AIDS epidemics in Ukraine as of January 1, 2010. // HIV infection in Ukraine : Information Bulletin/ Ministry of Health of Ukraine, Ukraine Center for HIV Control and Prevention, L.Hromashevsky Institute of Epidemiology and Contagious Diseases, AMS of Ukraine, Central sanitary and epidemiological control service under the Ministry of Health of Ukraine, — № 33. — Kiev, 2010. — P. 5.