IWPR Kazakhstan: HIV: People are dying because of people
In our society, people are increasingly witnessing the horrific stories about friends, colleagues and even strangers who are victims of a terrible disease that is HIV. The mortality rate among HIV-positive people is increasing due to late detection of secondary diagnoses. In addition, the blame is often put on the doctors, who had then denied people with HIV status not only first aid, but also hospitalization, examination, and so forth.
The author of the investigation is Tatyana Em, journalist writing on social issues from 2005. During last 10 years she was the chief editor of the “Naslednik”, “Litsa”, “Visa” magazines. Besides, she is the co-author of book “South Korea through Kazakhstan citizens’ eyes”. (Almaty, Kazakhstan)
38-year-old Almaty resident Anna, with HIV status since 2006, says that she was constantly denied emergency hospitalization in her local polyclinic №12.
“In 2008 I was denied medical care and hospitalization for the first time” says Anna. “Without disclosing my status, I consulted with a physician about feeling unwell, and I was redirected to a neurologist. Based on all indicators and analyses, I needed hospitalization – with such a diagnosis it is necessary to undergo a planned hospital treatment every six months. But I was refused [hospitalization], arguing that according to some directives of the Ministry of Health, only patients with acute indicators, such as stroke or heart attack can be hospitalized. So I decided to tell the head offices about this and my HIV status, but it only made the matters worse. I was sent to the AIDS center, referring to the primary diagnosis. From the AIDS center, I was sent to a clinic, where once again they refused to hospitalize me, referring to my HIV diagnosis.”
Note that the cat and mouse game played by the physicians and the lack of basic medical care for an extended period led to rapid deterioration of Anna’s health, and she had a complete nervous breakdown.
In the end, she was advised to contact the NRCPPA (National Research Center of Psychiatry, Psychology and Addiction) and refer to Dr. Victoria Boyko, who got Anna on her feet through conventional treatment. Full course of treatment, according to the patient, took only 30 days.
“I strove for justice, sought help in the Department of Social Protection, Ministry of Health, Human Rights bureau; appealed to the prosecutor’s office in Almaty, the Committee on Human Rights under the President of the Republic of Kazakhstan,” says Anna. “It is fair to say that through appeals, I was eventually hospitalized. When the hospital learned about my HIV status, they banned me from eating in the common dining room and brought a bucket of bleach in my room for disinfection of hygiene items and utensils. And the team was from the head of the department.”
Another personal story was shared by Maria (not her real name). “When I was diagnosed with HIV, I did not know how to go on living,” says Maria. “I expected help from doctors, but instead was met with rudeness and lack of understanding by healthcare professionals themselves. I was hospitalized based on the result of the secondary diagnosis, and my friend wanted to talk with the head of the department about my status. But he scornfully replied that HIV-infected patients cannot count on [receiving] attention and care, because the doctors do not want to visit them, and nurses are afraid to perform injections.”
“This is not an isolated case when people are rude to you in the clinic where your status is known, and they send you to the AIDS Center for any matter, not wanting to provide even basic assistance.” says Maria.
Lilia Kurbatova, director of the Council of Community Representatives of People Living with HIV (PLHIV) in Kazakhstan, has commented on the negative attitude of the medical staff towards people with HIV status in Kazakhstan.
“In community clinics, doctors are extremely reluctant in receiving HIV-infected patients once they learn about the patient’s status. And it is much worse for hospitalization [of patient] with multiple infections such as tuberculosis and hepatitis. It takes months to obtain a quota for free treatment. And this can be deadly for a person with weak immune system. Most people with HIV have a hard time finding a job. Nowadays, public organizations are the only places where they can legally work” says L. Kurbatova.
According to her, this category of citizens is and remains the most discriminated in Kazakhstan. And when doctors stigmatize people with HIV diagnosis, subjecting them to discrimination and denying basic healthcare, they deprive them of their right to life.
“Lawyers of the National AIDS Center work with HIV-positive people whose rights have been violated. Most of the violations are: disclosing diagnosis, refusing to provide medical care or providing inferior medical service. HIV patients have to be hospitalized due to their health conditions, but without professional legal assistance, they are even deprived of this right, they are simply denied treatment. Even if they are hospitalized, as a consequence, they experience negative attitude by healthcare personnel, disclosure of HIV status, the patient’s discharge from the hospital without his/her consent or without evidence, negligence of medical personnel and rudeness on the part of health professionals, refusal to provide assistance, errors in diagnosis and so forth.” says L. Kurbatova.
Ms. Kurbatova believes that the root of discrimination of HIV-infected patients is a common misconception due to lack of basic knowledge.
“It is hard to believe, but in spite of the vast informative work carried out in our society, many doctors still do not know that HIV is not an airborne virus” – says L. Kurbatova.
It is worth noting that the Public Association “Council of Representatives of the communities of PLHIV community of Kazakhstan” is committed to ensuring that current issues of people living with HIV status are heard. First and foremost, it is crucial to ensure people living with HIV have an equal access to health and social services, as well as access to information and education.
“Most importantly, we must ensure that people living with HIV have unimpeded access to prophylaxis, diagnosis and treatment in medical institutions. It is important to monitor the issues relating to stigma and discrimination; to provide diagnostic and treatment services to the population, including accelerated methods of diagnosis, monitoring and treatment of tuberculosis, taking into account the national index of the level of coverage of population with services. I alone receive at least 5 emails per month from people complaining about health workers who refuse to provide medical care.” said L. Kurbatova.
Today, the National Center for Control and Prevention of AIDS in RK has contacts with 25 non-governmental organizations, which help resolve issues among people with HIV. And there are more than 40 such organizations throughout Kazakhstan. Unfortunately, their efforts cannot reverse the public opinion.
Master classes, seminars, and training courses are regularly conducted in order to raise awareness among population, including young people and the most vulnerable population, in the subject of the prevention of disease, improving access to psychological, legal and health services for people living with HIV, and reducing stigma and discrimination against them. Teachers and health workers are organizing joint activities against HIV.
Despite the committed efforts (and the external tolerant attitude of society towards people with HIV status), there is still a number of outstanding issues that the state representatives, executive bodies and civil society need to address. These are issues of human rights protection, providing access to existing procedural, institutional and other monitoring mechanisms. It is done in order to ensure the rights of people living with HIV are protected, to prevent discriminatory actions and reinstate their rights, to establish mechanisms for reporting and enforcement, including the provision of legal aid and hotlines for reporting acts of discrimination and violence. All these measures can provide powerful and rapid means of mitigating the worst outcome of HIV/AIDS-related discrimination.
Maria Isayeva, a dentist, believes that denying medical care to a patient with HIV status by her colleagues is unacceptable. “If people come with such a diagnosis, how is it possible to deny treatment? There are cautionary measures that must be taken by every doctor for any patient. Disinfection measures have not been outlawed. I do not ask people about their status, all of my equipment are sterilized and the tools are disposable. It is even embarrassing to talk about stigma among doctors and colleagues.”
“Physicians should be aware of how any infection is transmitted and prevented, and it is absurd that doctors even discuss about the fact that HIV is not transmitted by airborne droplets. I think denying healthcare to a person because of his status is reprehensible for any man who is even remotely involved in medicine. Who but a doctor can correctly explain to an ordinary man that his neighbor, brother, mother or child is safe at home, that it is not right to condemn him, that he is safe as long as he takes basic hygiene measures.” said Isayeva.
At the Department of medical care of the Ministry of Health and Social Development of the Republic of Kazakhstan, the officials said that “the precedents of punishing doctors who refuse to provide medical care for HIV/AIDS infected citizens of Kazakhstan and Oralmans (ethnic Kazakh returnees) are not specified.”
But a survey among people with HIV status shows that the most frequent problems are: failure of medical staff to maintain confidentiality, delayed treatment due to lack of access to rapid diagnostic tests to determine CD4 cells, shortage of anti-retroviral drugs. According to experts, that leads to frequent changes in treatment regimens.
Additional problems are: refusing to hospitalize, inadequate access to treatment of viral hepatitis, inadequate access to healthcare for foreign nationals living in Kazakhstan, including antiretroviral therapy. We should also highlight the lack of social benefits (gratuitous periodic cash payments in regard with the health problems).
All this leads to the rise in mortality rate among HIV-infected people because of late detection of secondary diagnoses.
The Ethics Code of RK states that the doctor should provide medical assistance to any person, regardless of gender, age, race, nationality, place of residence, social status, religious or political beliefs, as well as other non-medical factors.
But if doctors do not want to be involved [with HIV patients] as a factor of humanity than the issue of responsibility and law come out into the foreground scene, which guarantee the protection of every citizen.
Under the Constitution of RK, Kazakh citizens are entitled to free guaranteed amount of medical care incorporated in the national and local budgets. The same document affirms that citizens are entitled to emergency and urgent medical care by any nearby health facilities, regardless of departmental subordination and forms of ownership.
Moreover, there is a Law of the Republic of Kazakhstan “On the prevention and treatment of HIV and AIDS”, which Article 15 (note to doctors – Rights and obligations of HIV-infected and AIDS patients) reads as follows:
1. HIV-infected and AIDS patients have the right to:
1) Exercise all the rights of citizens of the Republic of Kazakhstan, provided by the Constitution of the Republic of Kazakhstan, the laws of the Republic of Kazakhstan, corresponding to the international treaties ratified by the Republic of Kazakhstan;
2) Medical examinations and treatment free of charge within the guaranteed amount of free medical care in accordance with the legislation of the Republic of Kazakhstan.
2. HIV-infected and AIDS patients are required to take precautions for the protection of their own health and the health of surrounding people. HIV-infected people are prohibited from donating blood and its components, tissue and organs.
The Constitution and this core law should be enforced. Otherwise, supervising public authorities have all the powers to forcefully administering the laws of a civilized society. Perhaps those who gave the Hippocratic Oath should ponder upon that.
Tatyana Em, journalist