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Rwandan women: AIDS therapy beyond drugs
For Grace and her daughter Juliette, the anniversary of the April 1994 Rwanda genocide means one thing: they have lived with HIV for a dozen years, and their disease has progressed to AIDS. Grace was among the estimated 250,000 women who were raped at the time and is one of the untold numbers of women who were infected with HIV as a result. Juliette, now eight years old, is also infected.
Until recently Grace was living in abject poverty, trying to cope with the stigma associated with being HIV-positive and with the daily worry that there would be no one to look after Juliette after her early death.
At first, when Grace began to get sick, she found it inconceivable that she had AIDS. Those who carried out the genocide “murdered my husband and left me to die slowly from their AIDS,” she said. She found it equally inconceivable that there were drugs that could fight the disease. “In my case, only God, who knows that it wasn’t my fault that I caught this sickness, could perform a miracle and heal me.”
“Even if the [ARV] drugs were available, most of the women we interviewed were too poor to afford the food needed to take the drugs.”— Ms. Rakiya Omaar, director, African Rights
Grace and her daughter, like Josiane, Didacienne, Triphonie and other women in her situation, have now found that they do not have to wait for miracles to occur. All have been able to benefit from the Rwandan government’s commitment to providing anti-retroviral (ARV) therapy to those who need it — and for those who cannot afford it, at no cost.
These women are among the estimated 6 million Africans living with HIV/AIDS who are in immediate need of anti-retroviral medicines, out of a total of nearly 26 million HIV-positive people in the region.
Recent data from Rwanda’s 2005 Demographic Health Survey indicates an estimated overall adult infection rate of 3 per cent nationally. Earlier estimates by the Joint UN Programme on HIV/AIDS (UNAIDS) for 2003 placed the prevalence rate in the towns at 6.4 per cent and in the rural areas at 2.8 per cent. The programme’s Global Report for 2004, also using 2003 figures, estimated that some 250,000 Rwandan children and adults up to the age of 49 are living with HIV (figures for adults over 49 were not available). Of those, 22,000 were estimated to be children under the age of 15. Of particular concern is the high prevalence rate among young women between the ages of 15 and 24, five times the rate among young men of the same age group.
Wide treatment coverage
The Rwandan government, with financial support from a variety of sources including the Global Fund for AIDS, Tuberculosis and Malaria, the World Health Organization, the World Bank, bilateral donor agencies and private funds such as the Clinton Foundation, is able to provide ARV treatment to about 40 per cent of the people in need. Doctors and nurses are being trained, and a growing number of health clinics are able to treat AIDS patients. The estimated 19,000 people living with AIDS under treatment by December 2005 represented one of the highest coverage rates in sub-Saharan Africa.
This is particularly impressive in a country where 66 per cent of the population live below the poverty line and where the majority of households are unable to produce enough to feed themselves, even though 91 per cent rely on agriculture for their livelihoods. Rwanda’s food crisis remains chronic. It is even more severe in the context of HIV/AIDS, presenting a challenge to the ultimate success of the government’s treatment and care programme.
That programme involves not only medical and resource questions, but also interlocking issues of poverty, stigma and gender inequality. Because of these issues, access to ARVs is often not a reality for those who are the most marginalized and in greatest need of the medicines.
Poverty means going hungry. Hunger leads to malnutrition and a more rapid breakdown of the immune system. Social stigma against those with the disease means that many do not get tested in the first place. And gender inequality puts burdens on women that they cannot shake off on their own. Those burdens include responsibility for caring for children and other family members, ensuring that limited food supplies go first to hungry children and the risk of abandonment by men when an HIV-positive status is disclosed. Pivotal to all these issues is the need for food, a need as urgent as the drugs themselves.
Food a daily challenge
Sister Speciosa, a nurse and nun, is confronted with the reality of food every day as she provides treatment, care and counselling to AIDS patients at Butare Hospital, two hours drive from Kigali. “It is not only that they need the food to take with the medicine and that they need to eat more than they did when they were sick to get healthy,” she says. “It’s that their appetite increases. Some of my patients say they don’t want to take the medicine because it makes them so hungry.”
Although eligible for free tests and medication because of their lack of income, many find that the daily circumstances of their lives make it impossible for them to use those services. The lack of food or money for transport, difficult housing conditions, pervasive stigma, the stress of believing they will die without providing for their children’s care — all serve to accelerate a downward spiral into despair and hinder their access to ARV drugs, even when those drugs are free. Because women are primarily responsible for feeding their children and their families, they are most deeply affected by this inability.
Dr. Anita Asiimwe, coordinator for care and treatment at the Treatment and Research AIDS Centre, a government agency, also cited the food question in an interview with Africa Renewal. “It is clinically established that patients need to take their drugs with food,” she said. “It’s a dilemma for us, as everyone needs food. Is it right to only provide food for those on the drugs? What about everyone else who doesn’t have enough to eat?”
She illustrated her point with an anecdote about a child whose mother couldn’t afford to send her to school. The child, knowing that children of people living with AIDS had their school expenses covered, asked her mother why she wasn’t HIV-infected so that she could go to school too.
“Would women,” Dr. Asiimwe wondered aloud, “be encouraged to become infected in order to feed their children?” At times, she says, she has to try not to be despondent about the difficulty of providing for all those in need. “I have to remind myself,” she said, “of how far we have come, and not despair about how far we still have to go.”
‘We cannot eat pictures’
The Ministry of Health’s Nutrition Unit is fully aware of the need for a healthy diet for people living with AIDS, whether they are being treated with ARVs or not. In a recent interview for an assessment financed by the UN Development Fund for Women (UNIFEM) and undertaken by African Rights, a non-governmental organization, the ministry’s secretary-general, Dr. Ben Karenzi, stressed that the government is not oblivious to the importance of nutrition in the fight against HIV/AIDS. However, he also underscored the huge challenge of maintaining an ongoing food support programme, particularly in the absence of adequate funding.
A woman living with AIDS cited in the same assessment highlighted this difficult reality. “They show us pictures of all the food we would love to eat, but we cannot eat pictures… We have to have the means to purchase or produce the food. Visit us in our homes and see how we live. Then you will understand.”
The experiences of Grace, Triphonie, Josiane and Didacienne attest to a critical need, not only for the availability of anti-retrovirals, but for more general support to enable the women to access the drugs. They were among some 200 rape victims who survived the genocide, many of whom were infected with HIV as a result, whose testimonies were included in a UNIFEM-funded report published by African Rights in 2004, Broken Bodies, Torn Spirits.
Ms. Rakiya Omaar, director of African Rights, told Africa Renewal that the most compelling issue that emerged from the the testimonies was not only women’s dire need for anti-retrovirals and medication to treat opportunistic infections, but the difficulty in accessing them consistently.
“What became very clear to us was that even if the drugs were available, most of the women we interviewed were too poor to afford the food needed to take the drugs,” she said. “If they did get some food they gave it to their children, as they couldn’t eat when their children were hungry even if it was a matter of their own life. They also had no money for transport to the clinics. They worried incessantly about their horrendous living conditions, the desire to send their children to school. They were plagued by high levels of stress, not only for these reasons, but because they worried about their children when they were no longer around, which they knew was inevitable without ARVs.”
What was especially painful to her, she added, was that a number of women cited in the report have already died. Every month she hears of more deaths, even though ARVs are now more available.
Little grounds for hope
Triphonie’s story was typical. She grew thinner and sicker and her children went hungry as she tried to cope with living in a crowded, open army warehouse, rushing back and forth between her market stall and her four children to check on their safety. Her stall was rapidly failing, exacerbating the hunger.
Josiane lost four children to the interahamwe, the militia force that led the genocide. She has suffered debilitating memory loss. She was living in an unprotected shack without the means to pay for food or transport. Her 11-year-old daughter was a product of the rape and like her was living with AIDS. When her daughter got sick, Josiane would carry her to the hospital on her back. Although her CD-4 count called for them, doctors would not prescribe anti-retrovirals for Josiane because of her memory. “I was always confused,” she told Africa Renewal. “I did not know the day of the week or the time of the day.”
Grace, unable to support all four of her children, sent Juliette to boarding school. Juliette stopped taking her anti-retrovirals because she worried that her classmates would find out about her HIV status. Very ill, she was sent back to Butare. There she lay in hospital, unable to eat the hospital food, while Grace sobbed by her bedside, with no money to buy food Juliette could eat and frantically worrying about her three hungry children alone at home.
Didacienne would walk 10 kilometres to the nearest clinic when she was ill, a distance that, in her frail state, took her many, many hours. She could not afford the equivalent of US$0.60 for the bus that passed near her house on the outskirts of Cyangugu twice a week on market day. Not long before Africa Renewal interviewed her at her family homestead, she had spent weeks in the hospital. When she recovered and returned, she found that her small but well built house had been totally dismantled by her late husband’s relatives. They explained that they thought she was going to die and therefore sold everything, including the bricks and roofing, to pay for the funeral. Didacienne and her children share a shed that housed the cooking hearth with one goat and a growing number of rabbits.
‘Gift for Life’
These particular women have been fortunate. They have benefited from a small programme started by African Rights, called Gift for Life, that provides food and other basic necessities to women involved in the testimony project. The support is intended as a five-year bridge to self-sufficiency. Other organizations are also providing food to women in similar straits.
As a result, Triphonie has moved to secure living quarters minutes from the market and her stall is flourishing. Josiane’s “permanent” memory loss is improving now that her stress levels are diminishing; she is taking anti-retrovirals and is planning a small business enterprise while her daughter, healthy on her anti-retrovirals, is attending a nearby school. Juliette was found a space in a local high school and Grace has found some work, and all live at home where there is enough food for all the family. Didacienne now has transport money to go on regular visits to the clinic to monitor her disease; she is getting stronger every day.
Anti-retrovirals generally make an enormous difference to physical health. But without food and other related support, they may not make a difference to mental and emotional health. Women who receive anti-retroviral therapy and food and who are able to cover the cost of transport to the clinics are finding they have the physical and emotional energy to turn their lives around. Most of the women in the African Rights programme, for instance, have opened bank accounts, a sign that they are planning for their future.
The UNIFEM assessment points out that when women living with AIDS are given food support to relieve their immediate hunger and to regain their energy, they then often request assistance for income-generating activities and skills to develop alternative livelihood strategies or to turn their failing enterprises around. “A combination of food availability and anti-retroviral therapy,” says the report, can ensure that women living with AIDS “lead a productive life, become less burdensome on their families and communities and put less strain on the health system.”
UNIFEM, in partnership with African Rights and with the encouragement of the Ministry of Health, has started an advocacy campaign to address the critical link between food and anti-retroviral therapy in Rwanda. The campaign regards treatment not only as a health issue, but as a critical path towards women’s economic empowerment and self-confidence.
Triphonie, who was at risk of dying before African Rights came into her life, sat in the living room of her new home, her two youngest children eating with gusto out of a large bowl of nutritious rice and beans placed before them on the floor. She reflected on the changes in her life: “Only now am I able to no longer regret that I survived the genocide.”
Many health centres in Rwanda were finding that although they were providing ARVs to women who needed them, they were not getting the results they hoped for. The women visiting the clinics complained of extreme hunger and were disheartened by their inability to obtain the food they needed. And so seven clinics, funded by the US Agency for International Development and the International Centre for Tropical Agriculture, have begun an innovative programme. One of these, in Gitarama Province, has been particularly successful.
According to African Rights, the first step was to provide fortified SOSOMA (a nutritious mixture of sorghum, soya and maize) to the women to help them regain energy. The next step was to involve them in growing their own food crops. The project is based on the introduction of indigenous vegetables and tuberous seeds, which are well adapted to Rwanda’s climate and soils. With this comes training in soil fertility, crop diversification and the use of hardy seeds.
To get women living with AIDS interested in the programme, Mr. Hodali Jean Gatsimbanyi, the coordinator, cultivated a demonstration plot next to the health centre. He encouraged the women to harvest the produce for their family’s consumption during their visits to the centre. Then he distributed seeds to the women for planting in their home gardens, passing on tips and monitoring their progress. In order to join the project, the women were encouraged to form associations, known as amashyirahamwe. The project in Gitarama began with 50 women and soon grew to 90 as the results started to become evident.
Once the project was underway, the centre found that the health of the majority of the participants improved considerably. They gained weight, opportunistic infections have been reduced and in some cases the participants look healthier then people who are not HIV-positive. There is also a spin-off effect in the community. Community members in general have shown greater interest in acquiring the seeds and cultivating their own plots and the women in the programme have been encouraged to impart their new knowledge and skills to non-participants in their villages.