Asetena Pa: Positive Living in Dangerous Times
This article first appeared in The Statesman on February 1, 2007:
Chris Benjamin, 01/02/2007
“I’m positive, my wife’s positive, and we have a baby!” exclaimed Clement Azigwe, Chairman of the Northern Regional Network of People Living with HIV/AIDS, also dubbed among its membership as the Association of Brotherhood and Sisterhood. Mr Azigwe looked as if he would burst with pride and joy as he showed a wallet-sized photo of his newborn baby.
As he returned to his chair, the rest of the more than 40 association members, mostly women, gathered in a circle under the shade of a tree, near the back of a philanthropic doctor’s compound for persons living with HIV/AIDS, where many members live permanently. The membership was surrounded by individual patient huts that provide privacy within a community, unlike a regular hospital.
Clement began the meeting with an exciting announcement: 50,000 cedis would be given to each member, enough to pay for their government-subsidized monthly dose of antiretroviral drugs, along with a meal donated by the Ghana AIDS Commission and Ghana’s Second Lady, Hajia Ramata Aliu Mahama. In addition, everyone’s National Health Insurance premium of 100,000 cedis would be paid thanks to a successful fundraising initiative.
The association, one of seven in Northern Ghana, is part of a broad initiative to facilitate positive living, the term that people living with HIV/AIDS use for their efforts to live full, healthy, and long lives despite the viral invasion of their blood. Their strategy is twofold: ensure access to healthy food, environment, and antiretroviral drugs; and remove the stigma that society has used to make coping with a devastating illness all the more difficult.
Their vision for the future was aptly described by Theresa Baveng, Program Manager for the Christian Council of Ghana. “I would like to see a Ghana where there is a very minimal prevalence rate of AIDS and everybody is conscious of their HIV status,” she said. “And everybody stops stigmatizing persons with HIV, and draws persons with HIV near to them.”
To this effect, the staff of the Christian Council’s northern office has been active in Northern Ghana in the past three years, with the help of a grant from Christian Aid in the UK. CCG is an interfaith organisation comprising 16 churches. Its accomplishments with respect to HIV/AIDS in Northern Ghana are considerable, especially given that its Tamale office is staffed by only five people including two program officers, a secretary, driver, and security guard.
Yet this office covers a large territory of three regions and 18 districts. Its mission has largely been a coordinating and capacity-building one.
“There were lots of nongovernmental organisations and community-based organisations doing the same thing on the ground with no coordination, in some cases doing the same activities in the same community,” Mrs Baveng explained. “We wanted to bring them together as one.”
Since 2004 CCG has worked in 7 of the 18 districts of the north to coordinate the efforts of 121 organisations working on HIV/AIDS related issues. “First we performed a training needs assessment to determine who are those that have certain expertise and who are those lacking?” she said. “Then we were able to build overall capacity.”
Through these training efforts, these organisations “have learned about each other and spread out” to avoid duplication and better cover Northern Ghana with a more even distribution of resources. CCG has also linked the organisations to their DAs, international funders, and the Ghana AIDS Commission to gain better support, both financial and administrative. The groups continue to do their own independent fundraising, and the Northern Regional Network has just raised $15,000 on its own initiative.
As a result, these organisations reach more broadly and deeply into the communities they serve to educate the populace to the risk of AIDS, while at the same time fighting the stigma faced by people living with the disease.
While the Christian Council is largely focused on improving the lives of these individuals, and those of their families, its work also focuses on general education through the training of 124 peer educators to date. They have all been training using the ‘Stepping Stones’ training package, assembled by Alice Welbourn, a Ugandan woman living with HIV/AIDS.
The biggest challenge for CCG has been identifying the people it is trying to help. “Where are the people living with HIV/AIDS?” Mrs Baveng asked. “We can’t see them because there is a high stigma in our area.”
Just a few years ago, people living with HIV/AIDS feared backlash from the community if it learned of their illness. “Nobody would buy goods from their family; they would point at them and talk if they saw them on the street.”
If this stigma could be broken, and if families and the community at large could embrace those with the disease back into the fold, a great deal of suffering could be alleviated. “We decided to try to find some of the people living with HIV/AIDS and we started in Tamale because of its cosmopolitan nature.”
At first the staff hit a wall of denial. “People would say ‘there is no one here with HIV’ and the next day they are dead,” she remembered. But with time and persistence a few brave victims of disease and stigmatization came forth and began to realize the power and safety in numbers.
Now there are support groups in 7 districts, with membership ranging from 5 in Bunkpurugu to 59 in Tamale. In all there are 159 members of the 7 support groups.
They meet monthly to share a meal, listen to guest speakers, settle administrative matters, and discuss general problems. “Once a woman complained of a boil and she couldn’t figure out how to solve it,” recalled Mrs Baveng. “Another member had experienced the same thing and suggested an effective treatment.”
Quite simply, being together reminds them that they are not alone and gives them access to free, expert advice from each other. “They see others looking good; they know just because you have AIDS today doesn’t mean you die tomorrow.”
At the Tamale group meeting, numerous benefits to membership were recounted, most commonly that it helped them escape the isolation that was killing them faster and more painfully than AIDS itself, and that having a supportive community instils in them the pride, strength, and purpose to continue living.
They repeatedly emphasized that they are out and open about their HIV status, and that they are not ashamed to be in the media as people living with this disease.
One Togolese member explained in French just how drastically her life had changed, that she used to be unable to function, that she used to live a decrepit existence, laying and urinating and defecating on the ground, unable to get up on her own power.
The association helped her explain the truth to her mother, who now cares for and attends meetings with her. “I was dying,” she said. “Now I have a life again.”
Oftentimes the stigma is strongest in the minds of the very person living with this disease. As Ms Bawa, Secretary of the association, put it, “with the association I broke my self-stigma. Now I’m husband hunting,” she said to uproarious laughter.
Many in attendance described a life of loneliness, having been ostracized by community and family, before joining the association. Some thought that they were the only one suffering in such a state, waiting for death and brooding on cursed fate.
As one woman elucidated, “Once I developed symptoms there was nobody visiting me, with the clinic here and the association I can interact with others.”
In contrast to the bleak descriptions of their past, their meeting, attended by more than 40 adult members and 5 children (3 AIDS orphans of deceased members, a daughter of a living member, and one HIV positive boy) was a lively affair held with much joking and laughter in English, French, Dagbani, Twi, and Hausa.
There was constant confusion about what language to use when and who would translate, particularly with the presence of visitors from the Social Change Advisory Network, who advised members, in English, of their rights to dignity, comprehensive care, and self-determination. A representative from World Vision was also present to introduce a faith healer from the Liberation Church.
Faith, drugs, and community support: the keys to survival
The preacher roused the participants by emphasizing that a person with purpose is not easily killed. “From today I want you to plan and think about your future,” she proselytised to a chorus of Amens. “Do not think of death; if you have children, focus on training them in university.”
She noted that God is the source of the miracle of antiretroviral drugs, and added that His ability to help them in their illness goes even further. She had the mostly Muslim gathering pledge, hands on hearts, to “live in the mighty name of Jesus,” and went on to explain how her prayers had cured her eldest brother of HIV.
Later another Program Manager explained that “the Christian Council is trying to fight this [faith healing] attitude. We need to face the reality of the situation. We use preachers to talk about condoms.”
CCG has embarked on a massive public education campaign, called ‘Reach Out: Show Compassion,’ along with all of the support groups it has helped start and John Hopkins University from the United States. Last July they held a parade in Tamale with a PLWHA – persons living with HIV/AIDS – float.
They have also organized radio programmes in local languages featuring a representative from a local NGO rep, one PLWHA, and one family member.
Religious leaders from Christian, Muslim and Traditionalist faiths have been extensively involved, with leaders from all three traditions being trained to sensitize their respective communities about the danger of AIDS, how it can be prevented, and also the importance of compassion for those already suffering.
The message being delivered consists of questions such as, “Even if someone has AIDS and they got it through sex are you better than they are? Who are you to judge? Are your actions really more pure or have you just been luckier?”
According to Mrs Baveng, the source of the stigma is the association people make between AIDS and morality. “They still think you only get it through sex,” she said, and in Ghana sex is highly moralized, dogmatised, and theologized, necessitating the involvement of religious institutions in any anti-AIDS campaign.
There is a bit of shock value in the approach used, and some may find it hard to believe that a religious organisation makes extensive use of photographs of deteriorated genitalia and otherwise mangled bodies in the publication ‘What Sexually Transmitted Infections Including HIV and AIDS can do You!!!’
“We demonstrate everything out there,” said Mrs Baveng. “There is no need hiding it; people need to know the reality.”
These horrific images are used to make an impact in schools, churches, mosques and communities. The publication is one tool in the ‘Compassion Kit,’ found alongside videos, condoms, and a model of an erect penis. They are all part of the training kit on AIDS used across the country by faith leaders who came forth to be trained in how to use it.
According to Mrs Baveng, these efforts have had a wonderful impact and created an environment where Ghanaians are able to talk freely. People living with the virus no longer need to “feel shy to talk about it to anybody because they are happy with themselves. Before they didn’t want anybody to know.”
With this support, their families have been brought into the picture to provide the support essential to anyone living with an illness. “Before their families were afraid to touch them, or lie in the same bed, use the same mosque or bathhouse – they used to live in fear.”
According to one CCG Program Manager these efforts reach out to all faith groups, but faith is only part of the strategy. “Most members joined when their conditions deteriorated almost to full-blown AIDS,” he said. “Drugs made them healthier, but not healed. In their state they want to be healed.”
He added that some people want to believe the message of faith healers so badly that they stop taking their antiretrovirals and meet their maker much sooner than necessary. Having purpose and faith can keep a person with HIV/AIDS alive and healthy. But as important as faith is in the lives of staff and members alike, there is yet no cure for AIDS on earth.
Fortunately, there is treatment that, coupled with whatever strength and pride one can muster internally or from above, extends and improves life. CCG has provided 10 million cedis to each of the 7 support groups to help members pay the 50,000 cedi per month fee for antiretroviral drugs, with Government still covering the lion’s share through subsidies.
The work of CCG through NGOs and other community-based organisations has also improved the geographic accessibility of treatment. Whereas before patients had to travel to Kumasi or even Koforidua, Tamale now has its own store of retroviral drugs and is able to conduct CD4 blood-counts.
Unfortunately, due to inadequate remuneration, very few medical staff will work with people living with HIV. Only two nurses at Tamale Central Hospital will do so; the rest say that they are too busy every day.
This lack of committed staff is what necessitates the private clinic run by Dr Ablei, a philanthropist who provides free drugs and accommodation for poor people living with HIV/AIDS. The facilities at this compound were originally donated by the United States Department of Defence European Command.
CCG generally encourages people to live with their own families for support, but in some cases this is not possible. “The spouse may have passed, or the family may kick them out,” Mrs Baveng explained. Her colleague added that women in particular are often blamed for the disease, while their male spouses continue receiving support from their families.
In these cases, the compound gives them the support and sense of community is as life-saving as their medicines and their renewed sense of faith.
Life and struggle continue
Despite the growing numbers joining HIV/AIDS support groups, and despite the option of joining anonymously, many prefer to remain alone and unassisted in their fight for survival.
Some deny that they have HIV even after a positive test, some accept that they have the disease but will tell no one, some spend money treating related diseases during their denial and have no money left to treat the root problem: AIDS.
Life seems markedly better for those who choose to come out that they are infected, and join a support group. However, even members face enormous challenges.
For example, while the monthly fee for antiretroviral drugs may seem small, most of the people living with HIV are unable to work (due to the stigma and poor health) for income, so 50,000 cedis is an insurmountable barrier between them and effective medical treatment. As some members pointed out, the drugs are free in many other African countries including Nigeria and Uganda.
One woman at the meeting said, “I have no work to do; I would like Government to engage us in small scale industry.” Some members said that they spend their entire income on drugs and have no money left for food.
Another woman explained that most of them have lost their spouse and are raising children on their own. “We need assistance with education for our children,” she said.
Many of these women were skilled workers or apprentices, often seamstresses, until their positive diagnosis, at which time they were sacked or kicked out of their homes and denied access to a sewing machine.
Still, the group defiantly insists on breaking through the stigma that prevents them from fully integrating into society. Samuel, a teacher and a Bole District Assemblyman who is openly positive, said that “this regional association gives me courage and this courage moves me to start a district association. I also plan to break the stigma at the District Assembly.”
AIDS in Ghana
The official prevalence rate of AIDS in Ghana is around 3 percent, but this number includes only those cases that are known. Most Ghanaians have not been tested to ascertain their status.
At the same time, Ghana has slowed the spread of AIDS with a massive educational undertaking. “Even government workers talking to farmers about agriculture will bring it up,” said Mrs Baveng.
As a result the awareness level is very high; Ghanaians know about HIV and how it is transmitted. “But I’m not sure about behaviour change,” she cautioned.
Condoms, while widely available and inexpensive, are still not being used enough because, she felt, they are still perceived as immoral by many. “People watch when people buy condoms, especially women,” she said, lamenting the lack of organisations distributing condoms directly to end-users, particularly women, to circumvent the associated stigma.
According to her, while women usually take the blame when HIV rears its ugly head in the household, it is primarily brought there through extramarital sex, mostly from cheating men. In Northern Ghana, where the major religion is Islam, having more than one wife is common. While a wife is unlikely to have sex with more than one man, men will sometimes go looking for new sex partners after marriage, or use the services of sex workers.
“Women don’t have a say,” Mrs Baveng said. “Where the woman alone would come out the husband refuses, supposedly in order to protect the family’s integrity.” She added that this behaviour is socialised early on, when boys are trained to take an authoritative position in the family and girls learn to serve through housework.
Given this power imbalance, an effective HIV/AIDS strategy must include empowering women to their fair share of decision-making nationwide.
She noted some positive signs of improvement, particularly that there is medicine widely available for pregnant positive women at no cost, called Prevention of Mother to Child Transmission. “HIV education and voluntary testing is part of antenatal care,” she said, but many women cannot access this care because of geographic remoteness and cultural reluctance, and are unaware of their status.
If a pregnant woman tests positive she can take PMCT drugs during labour and give a dose to her baby within 72 hours of its birth. “One woman tested positive only to have her husband deny it, and he refused to take her to the hospital during labour. Her baby now may have HIV,” Baveng said.
She also said that she had heard of an anti-AIDS spermicide due for release in a few years, but that Ghana has yet to prepare for its distribution or a related educational campaign on its use.
CCG is now working to renew its grant from Christian Aid to continue and expand its activities into the other 11 districts of Northern Ghana. While much progress has been made, and while Ghana’s HIV rate is the envy of many other African nations, complacency on this issue could easily create an HIV crisis in this country, where many people still think the disease is a hoax or that only immoral people are at risk.
Another area that needs improvement in Ghana’s AIDS strategy, she said, is reaching out to the gay community. CCG has not yet conducted outreach specifically to this community but she knew of two groups that are doing so in Accra.
“We keep deceiving ourselves that we don’t have gays but we do, even in Senior Secondary schools,” she said, adding that reaching out to gays is not too controversial for CCG, given the imagery it has already used in its Compassion Kits.
Above all else, Mrs Baveng feels that all Ghanaians need to know their HIV status. “The main problem we have in Ghana is a lot of talk about testing but no one is doing it,” she said, noting that Oprah’s recent public testing in South Africa serves as a good example for people in celebratory positions here, such as the Black Stars, Kofi Annan, President Kufuor, and Prof Atta Mills. “People higher up also need to be open about their status,” she said.
Further, she would like to see easily accessible testing facilities “like in Uganda, where you find them at every corner.” She noted that some Ghanaian medical clinics lack the capacity to test for HIV, such as the ones in Tolon and Bunkpurugu. As a result, people have to travel a long way to pay their 5,000 cedis to be tested; the only people who bother tend to be sick already and have ruled out other illnesses. Mrs Baveng felt that testing should be free.
“I have a little reservation about the low prevalence rate because people don’t know their status,” she said. “But we are still happy the rate is going down.”
She hopes that Ghana will learn from Uganda’s example, but “we pray that we don’t have to go to that level before we act.”