Testimony. Strange looks
When I got to the barrio one late afternoon in January I felt…something was wrong. Many people were outside their homes and their eyes were on me. No one said a word. People who almost never greeted me did so that day. Friends who always gave me a kiss me when we met, that day were distant.
I didn’t understand what was happening. My objective was to arrive, see to my children and rest so I could go back to work the following day. Close to my house, one of my sisters called me over and gave me a small piece of paper. “A nurse left this for you,” she explained. The document said: “Present yourself urgently in the dermatological department of the policlinic of Los Pinos (a barrio on the outskirts of Havana).” I looked at my arms and thought: “There’s nothing wrong with my skin.”
On the following day, I took one of my children to the day-care centre and the other to school. Then I went to the dermatology department of the policlinic. When I got there the nurse said: “I knew this name was familiar. So it’s you.” Already worried I asked her what was going on. She asked me if I had had a medical check-up recently. I told her that no, that I was in good health and even donated blood. She asked me when had I last given blood. “In December,” I said.
“Perhaps from that same donation they reported an alteration in the tests made to the blood,” the nurse analysed. With a knot in my throat and about to start crying, I asked her which test had come out wrong.
“Don’t get like that,” she answered. “It’s nothing serious…it’s HIV.”
The female side of the epidemic
The immunodeficiency virus (HIV), which causes AIDS, is still the principal deadly infection in the world. In 2011 a total of 2.5 million new infections were reported and 1.7 million persons died due to reasons related to AIDS (24% less than in 2005), according to a 2013 report of the UN Millennium Development Goals.
Important advances have been made, like the early diagnosis of the disease or the prevention of transmission from mother to child, partly thanks to the global campaign “Eliminate mother-child transmission by 2015.”
Women, the principal link in the family, on occasions are undervalued in the human aspect and are submitted to violence by the men, who are afraid of losing the legal authority granted by the sexist culture that persists in contemporary society.
Cuba has great achievements in education and the social incorporation of women, but they still are victims of HIV. Many of them still do not recognise among their rights that of a full, safe and protected sexual life.
Because of this and other reasons, the number of Cuban women with HIV/AIDS has been growing in recent years, though few data on this are published. Women represented 20 percent of the virus carriers since the start of the epidemic in 1986 to date.
In 2013, women represented 18.5 percent of the new cases detected in the country. In 2011, out of a total of 1,787 persons identified as carriers of the virus in Cuba, only 362 were women, which is a very low figure when compared to that of the men.
The way of expressing sexuality is gaining different connotations with respect to the stage of life people are living and the biological sex of each person. New sexual behaviours start at increasingly early ages. Public health incorporates among its concerns the tendency to start having coital sexual relations at an earlier age, which usually happens without the due preparation to negotiate the use of the condom. This responds to the stereotypes passed on from one generation to the other and which inhibit the possibility of couples discussing safe sex and sexuality.
The STDs are one of the negative events seen in sexually active persons and have have the highest rates of prevalence and incidence, especially among the young population, though in recent years the diagnoses among adult persons has increased.
Women are much more vulnerable because of biological and social reasons.
In Cuba, despite the efforts in promoting the use of the condom and encouraging sexually responsible behaviours for the prevention of STDs and HIV/AIDS, the results of some studies reveal very little knowledge about how to prevent these infections.
This work’s objective is to explain, in tune with the world context, how the Cuban healthcare system cares in a differentiated way for the needs of women and putting into practice the gender focus in the work of preventing STDs and HIV/AIDS by the non-governmental Group for the Prevention of AIDS, a network of voluntary promoters that covers the entire country.
Testimony. The cause
You’ve no idea of the anguish, pain and desperation I felt with that news. “The tests have to be repeated to confirm the diagnosis,” the nurse said in an attempt to calm me.
I knew there was 99.9 percent possibility that it come out positive because I worked in a hospital. The Blood Bank’s staff would tell me that the appearance of antibodies against HIV shows that the virus entered the organism.
I was sure that something very bad would happen to me.
I left the polyclinic disoriented, crossed the street without looking and I had the sensation that someone was shouting a swearword at me. I got on the first bus that arrived. My eyes looked like two spring wells. I held on to the rail by the driver’s seat and he looked at me and ironically said: “Mulata, you’re so beautiful. Stop crying. If he left you get another because the worst thing that can happen to you is having AIDS.”
I wasn’t hearing anything or seeing anything, or anybody. I got off at the last stop. I walked along all of the Paseo de Prado to the Malecón, with the idea stuck in my head of jumping into the sea…the shame and embarrassment I was feeling was killing me. But I was unable to do it; I did not have the courage to kill myself.
Today I give thanks to God, the stars and all the supernatural for having stayed sitting down on the seaside drive’s wall crying like a little girl and asking myself in silence, why me? What will happen to my children? How will I give this bad news to my father? The crying of a baby was like a wakeup call and I remembered that my children were waiting for me. It was nightfall and my eyes were swollen from crying so much.
I miraculously took my first steps back to life.
I returned very late. I asked the babysitter to stay with the children that night. I went to bed crying and did not leave my room for seven days, without bathing or getting up. I lost a great deal of weight…it was a very difficult period. I faced it alone, without speaking to anybody, because the complex wouldn’t let me. At the time there were many myths about HIV. The persons who had the disease were discriminated against a lot and much more if you were a woman.
On the eighth day I heard someone knocking nonstop on my door. The lady who took care of my children was out, with her husband. I heard them shouting they were not leaving until I opened the door. I still don’t know how I was able to get up and reach the door. I only know that God was giving me another opportunity of reacting and living when I opened that door.
Those persons, who were not my family, were there and they were saying: “We already know what’s happening with you,” “that is not the end of the world,” “come with us,” “if it comes to worse we’ll take care of the children”…..
When I was able to get up, they convinced me to continue forward. And yes, I got up and was able to barely start working. My mind was already clearer and capable of reacting and tying up the loose ends.
I understood why so many strange looks fell on me that late afternoon in January.
I waited for the results of the tests while working. It was the most suffered wait in my life.
Containing the epidemic in women and girls
In 2007 it was estimated that there were 33.2 million persons throughout the world with HIV. The number of women is practically the same as the men, and even in regions like Sub-Saharan Africa there are more women than men living with the virus.
More than 18,000 women in 120 countries in the world assume with dignity and courage their diagnosis and work in civil organisations. They are accompanied by other women and they mutually encourage each other to achieve that the government policies favour and cover the basic health needs and the empowerment of more than 19 million women with HIV in the world.
In its time, the United Nations Development Fund for Women (UNIFEM) promoted the struggle to incorporate the needs of women in the policies designed to combat HIV/AIDS. For this it works with specific health ministries and agencies in drawing up programmes and actions that will guarantee women’s fair access to prevention, care and treatment of that disease.
In Cambodia, UNIFEM helped to create a network of seropositive women for advising health agents on how to make health services and resources accessible to women. In Nigeria, it achieved that gender equality be a strategic element in the writing of the National Plan against AIDS. It was in that country that a Technical Committee on Gender was established, which works to ensure that the actions to combat the expansion of the virus be applied to women. Gender empowerment zones have been established in Zimbabwe, India and Brazil, where the strategies to combat the scourge have priority and involve the empowerment of women. In Brazil, in addition, work has been carried out together with an organisation of Afro-Brazilian women to ensure that they have access to public services for the treatment of the disease.
Every year March 10 is set aside for the celebration of HIV/AIDS Awareness National Day among women and girls. The objective of this day is to recognise the impact of the virus on that population group and encourage the continuation of work to reduce the impact of the epidemic in this group. According to the Centres for the control and prevention of diseases, in late 2010 one out of four persons diagnosed in the United States with the infection through HIV were women.
The Cuban healthcare system prioritises the actions for prevention and attention to the epidemic, which it describes as controlled. Mechanisms for supporting women are even regulated, like the special detection programme applied to all the country’s pregnant women.
According to Dr. María Isela Lantero, head of the department of STDs and HIV/AIDS of the Public Health Ministry, since 1986 to 2011, a total of 4.9 million diagnostic tests had been made as part of the integral prenatal care, the principal mechanism for the early detection of the infection.
Many Cuban women found out they were HIV seropositive through this means, which aggravates their situation.
“Even though in Cuba AIDS is far from being a women’s health problem, like in other countries, there is a tendency to increase. The levels of information regarding STDs and HIV among Cuban women are relatively high, but many of them do not perceive as real the possibility of acquiring the infection. As a result, not all of them systematically assume protection in their sexual relations as an effective measure to avoid contagion,” said the doctor.
The healthcare system cared for 143 pregnant women with HIV in 2010, of which 41 found out they were carriers of the virus when the test was done as part of the prenatal care. The other 102 already knew of their status and decided to have children. Out of the 93 births that year, 92 healthy babies were born.
The Cuban healthcare system harmoniously combines early detection, the clinical follow-up of the pregnant women with HIV by the family doctor and other Primary Health Care specialists, combined with antiretroviral treatment, caesarean births, treatment of the baby at birth and the use of substitutes for breast milk.
All these actions allow for decreasing the risk of transmission from mother to child.
“While the healthcare system guarantees women, since the moment their condition as carriers of the virus is known, the care, follow-up and the measures to prevent the transmission, many carriers get pregnant when their immunological and virological situation is not the best,” Lantero regretted.
“When the planning of the pregnancy has not been the best, we have to recognise that the preventive actions have failed and all the potentials of the healthcare system have not been used to work with these women and achieve that they reach pregnancy in conditions of less risk.
“We must work more for gaining a greater awareness of risk among women and their sexual partners. Thus, there will be fewer women with HIV and those who are carriers will be able to plan their pregnancy at the opportune time, which will allow Cuba to meet the goal of the World Health Organisation of eliminating HIV as a health problem by 2015, which implies, among other challenges, achieving two percent or less mother-child transmission rates.”
In the case of women, they are frequently encapsulated for fear of rejection, of what people will say, and this leads to their not adequately caring for their health, that they not go to the neck of the uterus pathology consults to not say their diagnosis, that they lot get the diet (special food rations on the ration card) so the shopkeeper or the butcher doesn’t find out, that they not consume medicines so that they are not seen taking pills; and the worst part: that they not negotiate the use of the condom because they fear having to explain or being criticised.
When the woman gets sick it is as if the principal prop of a building were to collapse. What is the vision of health in the family? What happens when a virus that affects all the members enters the home? It is still difficult for many women to detach themselves from that inconvenient and non-paid burden of caregivers and of also assuming a leading role in the home, but not in domestic chores and yes in the dynamic of life. Women’s voice has to be more present in couple decisions, which can range from family planning to the simple decision of incorporating a condom in sexual relations. They must learn to open the dialogue with the family regarding this subject, without being seen as in the wrong or judged.
Those who carry the disease have an entire series of rights regarding their professional work, their artistic-cultural recreation, marriage, the updating of information on research on the disease and the discretion in relation to their condition, among others. These rights are recognised in the Cuban Legislation for AIDS, whose principal actor for its putting into place is the National Healthcare System.
GPSIDA. The challenge of incorporating gender to prevention
The project’s bases were written with a gender focus, but then we lacked the tools to put into practice, with total coherence, specific actions for men and women.
An activist was trained in a workshop financed by the NGOs HIVOS and Welthungehilfe, and facilitated by specialists like Dr. Norma Vasallo, from the Women’s Chair of the University of Havana.
That person assumed the appointment of national gender referent of the project. The workshop was repeated to train a person per province to head the actions at the grassroots and thus respond to the work objectives of GPSIDA. In August 2009 a workshop of women leaders in the prevention of the virus was carried out in the GPSIDA National Training Centre, in which voluntary women from throughout the country participated. The gender focus was then introduced in all the work methodology.
To improve gender equity in the group’s results the following actions were carried out:
1. Analysis of the workshops’ contents.
2. Diagnosis of the needs of men and women in the accompanied communities.
3. Training of gender referents of the provinces.
4. Workshops for sharing experiences in the application of the gender focus.
5. Meeting with the Municipal Secretariat of the Federation of Cuban Women in Boyeros, Havana, in order to seek joint strategies to work on the prevention of HIV in women and support the women diagnosed offering them free training courses.
6. Analysis of gender in the entire project’s work to improve equity.
7. Incorporation of gender as an element of permanent analysis in the meetings of the group’s National Coordination Committee.
Thanks to this plan, the following results were obtained:
1. Gender referents were trained and named in each province.
2. Regional gender referents were trained and named for the West, Centre and East.
3. Diagnoses were carried out with a gender focus to identify the most pressing needs of men and women.
4. Based on those same perspectives, the actions that would respond to the identified interests were outlined.
5. Increase in women’s participation in activities, actions and training courses planned by the project.
6. Increase of women’s leadership roles.
7. Analysis of the subjects related to STDs in a differentiated manner for men and women.
8. Differentiated analysis of the vulnerabilities of men and women with respect to HIV.
9. Differentiated analysis of the impact of HIV/AIDS in men and women.
10. Annual national meeting for sharing experiences in the gender-related work.
A concrete example of how to train in a differentiated manner in the prevention of STDs is the following way of speaking about the symptoms of gonorrhoea, one of the most frequent STDs, caused by the bacteria Neisseria gonorrhoae.
Gonorrhoea predominates over syphilis. If men and women receive a single package of information, it is difficult to raise the perception of risk in both sexes. Gonorrhoea and the infection by chlamydia can cause sterility in both men and women when not treated.
1. Unusual vaginal secretion.
2. Unusual vaginal bleeding.
3. Pain in the lower part of the abdomen.
4. Infected women do not necessarily have symptoms or present slight problems when urinating or having discharges.
1. Pain when urinating.
2. Purulent urethral secretion.
3. In the males it takes two or three days after sexual contact to have symptoms.
Women who are part of the GPSIDA work with a great deal of love and are committed to the mission of achieving the incorporation of more women to this battle. With time the epidemic has been feminised on a world level and Cuba is no exception. It is important that women take over the vanguard and are the ones heading the changes in decision making regarding their sexuality. The volunteers in the prevention of STDs/HIV/AIDS are convinced of the need that nothing can be done for us without us.
Testimony. New dawn
I was 24 years old when I found out, on February 6, 1990, that I was an HIV carrier.
Getting an HIV positive result was considered then a death sentence because there was nothing to combat it. The doctors gave very few expectancies because they had none themselves.
They told me I had five years left to live.
I stopped thinking about the future, I looked upon my children with sadness, I was easily irritated. I felt dissatisfied because then it was said that HIV was only acquired by homosexuals and prostitutes. I was not in any of those groups.
I reacted and made important decisions: not to argue over banalities, enjoy everything and value all the possible spaces to be with my children and my father, go out with them and tell them “I love you with all my heart,” “I want to be with you forever” and “I don’t want to leave you alone.”
One of the most difficult problems for women carriers is the understanding of the family. In many cases, the arrival of the virus disarticulates the family. Even today it fills the family model with prejudices and discriminations.
In my case everything came apart. I had separated from my children’s father and had started a new relationship two years before. Everything ended with the diagnosis. He didn’t even know he had the virus. It is very difficult to explain how one contracted HIV. You think it is the end, that no one will ever again want to get close to a woman like you.
My children gave me the strength to continue forward. They have withstood many things, many fears, but between the three of us we moved forward. Starting with my diagnosis I started having contact with other persons in my same situation in the Pedro Kourí Institute of Tropical Medicine. I had the luck to be treated by the very excellent doctor Jorge Pérez Avila. He proposed that I work in the Santiago de las Vegas Sanatorium, where I have been going every day since 1994 to work as the secretary of the nursing department at that time; now I am head of the area and responsible for Health Promotion and Education.
In 1996 I met Nicolás Rodríguez, who at the time was the provincial coordinator of GPSIDA, an organisation comprising a group of patients and workers who carry out training, prevention and accompaniment actions with persons with HIV. He explained to me who were the voluntary workers and that encouraged me to prepare myself to also contribute in this group. I trained as a health promoter and started working in schools, communities, workplaces, to understand the anguishes and needs for information of persons living with HIV/AIDS. I learned to understand all the preferences, to listen to homosexuals, lesbians, bisexuals, heterosexuals, women. In 2002 I went on to form part of the national coordination team. Since then I have toured all of Cuba on my mission and I have had the luck of getting to know women carriers from all over the world.
In 2003 I formed part of the Cuban delegation to the World AIDS Conference in Uganda, Africa. For the first time I saw face to face how severe the epidemic was…, I found out about the alarming number of orphaned children that already existed because of AIDS. It was staggering. While there I found out about the organisation ICW and joined the recruitment of seropositive women interested in having a positive activism. The aim was to form groups of women living with HIV/AIDS able to help each other to defend their rights having Peace as the prevention tool, in addition to expanding access to antiretroviral medicines and healthcare systems for all the women, girls and adolescents of the world living with HIV.
Once I decided to struggle against HIV, I try to be present in the decision making spaces. In 2004 I assumed the coordination of the Support Line for Seropositive Women in Havana. I started recruiting and training women in the municipalities so they would accompany those recently diagnosed. It has been a challenge for me to achieve that the women be accompanied in the moment of the diagnosis because I felt very alone. In 2005 I was awarded the National Hope Prize in the prevention category, a recognition granted by the Support Line for persons with HIV who stand out in several categories, mutual aid, solidarity and prevention.
I have toured all of Cuba. I have met with women and men in remote places. I have assumed with dignity my diagnosis. I have participated in almost all the national meetings of persons living with HIV and have defended with courage the right to respect and quality health care. Our country has had a well set up design since the start of the epidemic; there has been more than enough political will for the care of persons who carry that disease, but we still have to continue working since there are persons who discriminate against and stigmatise those who carry the virus.
My door is always open waiting for anyone who needs attention and advice, especially those persons attempting to open doors to hope and life. (2014)
Head of Health Promotion and Education of the Group for the Prevention of AIDS (GPSIDA)
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