When parenthood is a challenge…

“E.V.A.” Association Project Coordinator Irina Evdokimova wrote an article for the “Inequality” project, created by the international organization Oxfam. The topic was assisted reproductive technology in Russia for people living with HIV.
 
The recent proposal from the head of the Russian Orthodox Church to eliminate abortion from the basic medical insurance provoked a resounding response. Proponents of this approach cite the poor demographic situation in the country and the necessity to improve it.
 
It’s true that in several regions of Russia the death toll continues to surpass the number of births, but on average the situation in the country has stabilized in comparison with the 90s and the “zero” years. However in order to increase the birthrate and improve the demographic situation there is a more reasonable and ethical approach (in relation to health care solutions): to provide the opportunity to have children to those families or women who can not accomplish this naturally. For example, people who are infertile.
 
The Director of the Department of Medical Aid to Children and Obstetrics Services, E.N. Baibarina, says that 10-15% of married couples in Russia have infertility problems. Some of these couples can only conceive a child with the help of assisted reproductive technology, in particular in vitro fertilization (IVF).
 
Since 2004 the Ministry of Health has included the IVF program on the list of technologically advanced medical aid which citizens can receive by quota; starting in 2013 using assisted reproductive technology (ART) services was included in the basic medical insurance in almost all regions. All of these measures certainly work to improve access to reproductive health services for those people who can not afford this expensive procedure.
 
It seems that the situation only gets better each year: more people receive the opportunity to conceive. The latest version of the mandate from the Ministry of Health entitled “The Rules of Using Assisted Reproductive Technology, Contraindications and Limitations to its Use,” which was released in 2012 is quite advanced, and even elaborately describes the procedure of providing ART to people living with HIV and serodiscordant couples (those which only the man is HIV infected). However despite the positive measures taken in relation to HIV positive people, in practice the access to ART services if limited for this category of patients. A rather large number of HIV positive people and serodiscordant couples who struggle with infertility look into medical tourism (for instance to Poland) as the only option in receiving quality aid free of stigma and discrimination on behalf of the medical personnel.
 
This article explores the basic possibilities in overcoming infertility challenges of HIV positive people in Russia by use of ART methods as well as the barriers in their acquisition on various levels.
 
HIV in Russia
 
On November 1st, 2014 there were 864,394 individuals officially registered as living with HIV, of which 76.3% are people of reproductive age (20-40 yrs). Women make up 36.9% of the total number of registered cases of HIV infection and what is more that their portion continues to increase each year. Apart from the fact that we are currently experiencing a “feminization” of the epidemic, it is more evident that HIV is becoming prevalent in the general population beyond “vulnerable groups.” Today a person living with HIV is not necessarily one that has substance abuse issues or numerous sexual partners. On the contrary: more and more frequently it is an educated woman with a good job and one stable partner. Among the people living with HIV there are politicians, public figures, doctors, teachers, PhDs, and law enforcement officers.
 
HIV infection is a chronic disease which does not prevent the possibility of conception, pregnancy, birthing and raising of healthy children. The lifespan of HIV positive people who take antiretrovirus therapy is comparable to that of people who do not have HIV.
 
Since the vast majority of HIV positive individuals in the RF are people of reproductive age, one can not underestimate the role of institutions that work with issues of reproduction and additionally the importance of patients with HIV’s access to quality services. It is important that the reproductive rights of people living with HIV are not violated on both the level of specific institutions and specialists.
 
Reproductive Rights and Infertility Treatment
 
The World Health Organization (WHO) defines the reproductive rights for men and women as availability to receive information and access to safe, effective, inexpensive, and accessible methods of birth control in accordance with their choice and also the right to access to adequate health services which may be provided to women for safe pregnancy and birthing and additionally create the best opportunities for couples to have healthy children.
 
Often contraception programs or prenatal and postnatal care play important roles in the public health strategy of a country. Significantly less attention is given to so-called periconception period which begins one year prior to conception and ends 3 months after conception. Assistance during this period, which includes infertility treatment, is crucial in providing for reproductive and maternal health.
 
Another important question is providing assistance in the sphere of sexual and reproductive health to HIV positive women. In Russia, a woman living with HIV is seen by the public health services first and foremost as a carrier of the infection which she may pass on to her child or partner, and then as a person with their own needs and requiring quality care. This specifically explains the adamant attention directed towards prevention programs of HIV transmission from mothers to children (which, of course, is extremely important for both the mother and child as well as the government whose objective is to reduce the transmission of HIV from mothers to children to zero), and notably less interest is dedicated to preserving and supporting the sexual and reproductive health of women.
 
Recent research by Rossi Ada S., Amaral E., and Makuch MY in Brazil showed, that specialists of services that help people with HIV focus much more on preventing pregnancy in their consultations with women than on informing them about safe measures to conceive and treating infertility with methods such as ART.
 
Fertility treatment though the use of ART includes not only in vitro fertilization (IVF) but also ICSI (IntraCytoplasmic Sperm Injection), sperm, egg, or embryo donors, surrogate mothers, and artificial insemination.
 
ART in Russia (including for HIV positive individuals and serodiscordant couples)
 
The federal law “On the basis of health protection” (article 55) guarantees the right to ART for infertile couples regardless of whether they are officially married as well as to single women.
 
In order to receive IVF for free, patients must obtain medical documentation filled out by a physician and meet with the Committee on the Selection of Patients to Receive IVF Treatment.
 
ART in Russia is in the sphere of public health where the participation of commercial centers in providing medical care exceeds that of the governmental institutions in a ratio of 3:1 (according to the Russian Association for Human Reproduction). Recently, in turn, the likelihood of discriminatory practices in relation to HIV+ people has been increasing increases.
 
The Ministry of Health decree on ART (№ 107n) describes the rules for providing ART services to HIV-positive individuals and serodiscordant couples (where the man is HIV-infected) in great detail. It states that “HIV infection does not prohibit patients from selection for receiving medical assistance in using ART.”
 
The conditions of receiving ART for HIV-positive individuals are the following: subclinical (in other words without clinical manifestations) stage of HIV-infection; undetectable level of virus in the blood; absence of contraindications (psychological and somatic illnesses); existence of discharge documents and conclusion from an infectious disease doctor about possibility of having ART done.
 
At the first glance the situation seems quite positive and does not require much attention. However, present here too is our country’s traditional division between the law and its enforcement.
 
Barriers in undergoing ART for HIV-positive individuals in the Russian Federation
 
In 2014 the non-commercial partnership “E.V.A.” conducted a survey among members of the partnership from 19 Russian regions on the access of HIV-positive people and serodiscordant couples to ART services.
 
The most widespread examples of rights violations for HIV-positive indivuduals and serodiscordant couples were:
 
– refusal to provide care in general;
 
– refusal to provide services for sperm washing for men in serodiscordant couples (couples were suggested to use sperm from a donor);
 
– refusal to use cryopreservation (freeze) sperm of HIV-positive men;
 
– increase in the cost of the procedures for HIV-positive individuals or provision of ART services only by personal resources;
 
– Failure to comply with laws in that HIV-positive people can not receive care with their universal health insurance.
 
Clinics often argue that refusals are due to the lack of the proper equipment. However if one seeks the systematic basis of the problem in HIV-positive individuals’ and serodiscordant couples’ access to ART services, it is evident that it is stigmatization. An especially challenging situation has developed in the Russian regions that are located far away from the metropolitan centers, where the level of stigmatization is high both among the general public and medical personnel.
 
Frequent stigmatization on the part of medical personnel is related to:
 
absence of modern information about HIV and the possibility of antiretroviral therapy;
 
exaggerated risk of exposure to staff;
 
lack of knowledge about low (on the condition of taking part in preventative programs on the transmission of HIV from mothers to children) risk of infecting the fetus.
 
This interview with a young HIV+ woman illustrates this situation of medical staff’s lack of reliable knowledge about HIV:
 
Woman А., 29 yrs: “The doctor told me that they don’t take HIV-positive patients because they don’t have some kind of closet and their specialists are afraid of being infected. He subtly suggested that I get a dog rather than risk infecting a child with HIV. I had to explain that I truly wanted a child and hadn’t missed a day of my treatment and that in general everyone these days gives birth to healthy babies. He shrugged.”
 
A similar situation occurs in couples where only the man is infected with HIV. Remember that according to the law, serodiscordant couples have the right to conceive with the use of ART on the basis of epidemiological indications (i.e. to lower the risk of transmitting HIV to their partner). However these couples, if they are not denied service entirely, are offered to use donor sperm. Difficulties also arise when it is crucial to freeze sperm (such as in situations when the man will have chemotherapy due to cancer treatment).
 
Woman C., 34 yrs: “ I don’t have HIV but my husband does. He is to have chemo because he has cancer… But I have problems on the woman side. I’ve been treated now for a long time without success. We wanted to freeze his sperm because it’s clear that now with his treatment there’s no hope. We went to one clinic where were were told that they don’t have a special place to store the sperm. And then I spoke with one young lady who worked there. It turned out that their management is strictly against “HIVers”; they’re scared that we will scare off other clients.”
 
The problem is compounded by the fact that for families where one or both partners live with HIV infection, adopting a child is impossible under the Federal Law n.167-FЗ “On Amendments to Certain Legislative Acts of the Russian Federation on the Issue of Placing Orphans and Children Without Guardians”. Therefore, for couples that have one or both partners with infertility problems, the possibility to become parents is restricted, on one side by the practice of refusing ART services and on the other in the absence on the of legislative level of the possibility to adopt a child.
 
The situation with ART for HIV positive and serodiscordant couples mirrors the general tendency connected with stigmatization of HIV positive people. In the public’s mind, as in the mind of doctors, even now HIV positive individuals are seen, first of all, for their infection status, and not as people who have their own desires and needs related to birthing and raising children and the opportunities for fulfill them.
 
Thus, solving the problems of HIV positive people and serodiscordant couples’ accessibility to ART services for the most part lies in the area of improving the preparation of doctors, gynecologists, reproductive experts, and other specialists. It is important that in doctor training programs not only the risks of infection by way of their professional work are discussed, but also specific technologies for working with HIV positive people and their bio-material.
 
It is crucial to remember that people who live with HIV have the same rights for treating infertility by ART methods as those who do not have HIV and also that they have the same rights to raise and educate their desired and loved child.
 
Author: Irina Evdokimova, clinical psychologist, “E.V.A.” Association project coordinator
 
Source: Neravenstvo.com.
 
Reference
 
The project “Strengthening the potential for civil society by combating inequality in BRICS countries” is brought about by the international organization ‘Oxfam’ in partnership with civil society representatives from seven countries: BRICS countries (Brazil, Russia, India, China, South Africa), as well as Indonesia and Mexico.
 
This project is intended to support national civil society organizations in the participant countries in their effort to contribute to the combat of social and economic inequality in the world.
 
As part of the project, the international expertism of Oxfam is united with the experience of national civil society organizations who work directly with the addressed groups in order to develop recommendations on the topic of fighting against inequality for further consultation in working with leaders from BRICS countries and G20.