Testing and treatment are the outward signs of HIV diagnosis, but the mental impact is too often ignored
KAMPALA – In the second part of the three-part series to shine a light on the negative impact of stigimatisation in the wake of the celebrations to mark World Aids Day on December 1, PML Daily’s Senior Staff Writer David Mafabi looks at the dangers of the mental impact on those affected, but with this element often ignored.
She lives in the shadows, veiled in secrecy like Ninjas in film movies — except that, for her, there is little glamour in her furtive existence.
She is among the many women who are living with HIV in a society that is deeply conservative when it comes to matters of sexual morality.
In the rural communities of Sironko district, Bukyabo sub-county in Kisikisi village, a place she calls home, deep-seated stigma has consigned her to a life of penury, shame, isolation and fear.
With no one else to look out for her but herself, Ms Marriam Nakusi walks very Friday to Mutufu market to look for people who can help her with food to survive.
She veils herself throughout the face, back and is careful about what she does and who she interacts with least she gets exposed.
The fear of discrimination, isolation and stigmatisation for her condition is an existential one.
Nakusi says she first learned that she was ill in 2016 when she was 34 and that she distinctively remembers the evening when she called her children to inform them about her illness
“They were all quiet. It looked so hard to take in, not just because of what the revelation suggested for the welfare, but also because of the community around us,” she said.
“In my community a girl who gets pregnant before marriage or gets a sexually transmitted disease is considered immoral to the level that she can even be banished from the clan for shaming them,” added Ms Nakusi.
She revealed that within a couple of months the disease had begun to take a grave toll on her.
She lost a great deal of weight and was unable to keep up with the pressure her work demanded and that she resigned and stayed with her parents and other members of the family at home.
She said by then rumours of her illness had clearly spread, and people in the community would whisper as she passed.
She said that she expected people to understand – as she tried to lead as much of a normal life as she could – despite what she was going through and especially for the family members.
“I would hear voices saying different things to me. I would hear voices talking directly to me, sometimes voices said the nastiest things people thought about me; she is a living dead, she is already dead,”
“I would hear voices, see and feel – or even smelt and tasted – up to now the community regards me as an immoral person, a sinner who is being punished by God,”
She said her neighbours are hostile; they can be eating food when she is around without inviting her but can send abuses without minding that about her situation. “That has been one of the biggest challenges in life.”
“Stigma has reduced but silently it’s still happening. I know of some people who go far away from their nearest clinics to get tested and receive treatment simply because they don’t want to be recognised as positive,” said Ms Nakusi.
Mr Charles Odoi, the TASO manager Mbale branch said HIV-related stigma is one of the strongest obstacles to effectively responding to HIV and that the issue of stigma is very important in the battle against HIV/AIDS in Uganda since it affects patient attendance at healthcare centres for obtaining antiretroviral (ARV) medications and regular medical check-ups.
He said stigmatization creates an unnecessary culture of secrecy and silence based on ignorance and fear of victimisation.
“Stigmatisation is there, it is a complex concept, I can equate it to soldiers in the battle field on a new war. Yes the medicine is now there but the new war is stigma, so we need more health education and awareness on the importance of reducing stigma because it affects adherence to medication,” said Mr Odoi.
He revealed that like Ms Nakusi, PLWHA need support that is why at TASO Mbale we have created peer to peer support in the communities, clients to clients community HIV/Aids drug distribution points, community Client Led distribution of drugs in groups of six.
The Joint United Nations Program on HIV/AIDS (UNAIDS) defines HIV-related stigma as a process of devaluation of people either living with or associated with HIV and AIDS” and adds that it is leading to delays and failures in seeking treatment by PLWHA and delays in diagnosis of high risk patients.
Dr Stephen Watiti in one of his stories A story of HIV/AIDS and hope, says stigma relates to the beliefs and attitudes of people towards PLWHA and adds that these are still prevalent in society.
He adds that these beliefs are based on negative views such as prejudice, negative attitudes, abuse and maltreatment which are directed at people simply because they are seen as belonging to a particular group or are perceived as being different.
Dr Stephen Watiti is a medical doctor and was the first Ugandan medical doctor to become public about his HIV status. He is an HIV/AIDS activist and has participated in several fora in the country and at international level related to HIV stigma and discrimination.
Dr Watiti says there is need to end stigma, so that HIV positive people can open up if they so choose to, we also need to bring the PLWHA into contact with individuals without HIV/Aids and let them share their stories, bury misconceptions and cultivate an empathic understanding of each other if we to end Stigma,” said Dr Watiti.
Ms Agatha Nafuna, a retired nurse says when you think of PLWHA, you probably think of someone who is disheveled, jobless, homeless or socially isolated, a person who is going to die anytime.
“Let us think about PLWHA as well-respected, highly-functioning member of society who simultaneously struggles with his/her health like any other person,” said Ms Nafuna.
A paper on; Experiences of HIV/Aids stigma of PLWHA and nurses involved in their care says the nature of the stigma may be different in different cultures.
It adds that HIV/AIDS in Uganda demonstrates a strong gender bias (women are more stigmatized than men), rejection of people by their families, increased suspicion and gossip, and isolation in communities.
Dr Muhammad Mulongo, a gynecologist attached to Bulambuli district says despite concerted efforts to demystify the disease and enhance awareness and understanding, many people still associate HIV/AIDS with moral decadence and promiscuity like Ms Nakusi’s community.
He revealed that stigma is perceived as a major limiting factor in primary and secondary HIV/AIDS prevention and care.
Dr Mulongo revealed that health studies within Bulambuli by the District Health Team have found out that secrecy affects the access of women to treatment and financial and emotional support from families.
Nakusi is not the only one suffering stigma, there are many people out there who are suffering from HIV/Aids across the world who are suffering stigma and community rejection, just because the people around them are ignorant..
Dr Jonathan Wangisi, a former director of operational research at TASO said stigma contains the following five elements; differences are identified and labeled, human differences (labels) are linked to undesirable attributes, a segregation of “them” and “us” occurs and that the resulting status loss and discrimination lead to devaluation, rejection, exclusion and blame.
While noting that stigma and discrimination were the biggest driver of death of HIV patients, Dr Wangisi raised concern over the rise of stigma and discrimination in universities, communities, health centres/ hospitals and colleges.
“The government is providing free ARVs to all PLWHA. However, stigmatised patients tend to abandon drugs, thus affecting their viral load and compromising their health,” Dr Wangisi said.
“We have also learnt that students living with HIV/Aids are having a difficult time in universities and colleges. There is an urgent need to engage learning institutions to implement policies that protect people living with the virus,” added Dr Wangisi
At the sixth annual Y+ Beauty Pageant, UNYPA launched its a campaign geared towards ending stigma and discrimination among young people living with HIV in Uganda.
The unveiling of the 2019-2020 edition themed Peers making it happen was the first of a series of activities in the build-up to the November 22 grand finale in Kampala and some of the young people who attended testified to have been empowered on issues to do with the epidemic, especially on how to protect themselves.
Rev. Canon Dr Gideon Byamugisha, an Anglican priest in Uganda, who became the first African religious leader to openly admit to being HIV-positive said PLWHA have rights and these rights need to be protected.
“And once you stigmatise PLWHA, you are violating their right to live and enjoy life to fullest, let us stop this because these are human beings like any other,” said Dr Byamugisha.
Dr Dora Musinguzi, the executive director at UGANET said adapting, developing, validating or implementing stigma-reduction interventions in PLWH was a big step in fighting HIV/Aids..
She said the target populations include adolescents and/or youth, caregivers, and other key populations such as sex workers, people who inject drugs, transgender people, prisoners, and men who have sex with men, among others.
She explained that PLWHA have rights and that these rights include; a right of access to healthcare including reproductive health, a right to sufficient food and water; and a right to social security, including, if they are unable to support themselves and their dependants, appropriate social assistance.
“And all these must be respected as laid down in the constitution if we are to break the stigma that is now proving a headache to HIV/Aids treatment,” said Ms Musinguzi while speaking to health journalists at Golf course Hotel in Kampala two weeks ago.
She explained that Stigma can result in people living with HIV being insulted, rejected, gossiped about and excluded from social activities often feel nervous about and they will fear telling others that they have HIV due to the fear of stigma.
A paper entitled; Persistent HIV-related stigma in rural Uganda during a period of increasing HIV incidence despite treatment expansion by Brian T Chan, Sheri D Weiser and others analyzed data from the Uganda AIDS Rural Treatment Outcomes (UARTO) study during 2007-2012 to estimate trends in internalized stigma among people living with HIV (PLHIV) at the time of treatment initiation.
Data from the Uganda Demographic and Health Surveys (DHS) from 2006 and 2011 was also analysed to estimate trends in stigmatizing attitudes and anticipated stigma in the general population.
The researchers found out that there was an upward trend in internalized stigma among PLHIV presenting for treatment initiation (adjusted b=0.18; 95% CI, 0.06 to 0.30).
“And in the general population, the odds of reporting anticipated stigma were greater in 2011 compared to 2006 (adjusted OR=1.80; 95% CI, 1.51 to 2.13), despite an apparent decline in stigmatizing attitudes (adjusted OR=0.62; 95% CI, 0.52 to 0.74),” reads the paper on ministry of health website.
The paper reveals further that stigma has increased over time among PLHIV in the setting of worsening anticipated stigma in the general population and that further study is needed to better understand the reasons for increasing HIV-related stigma in Uganda and its impact on HIV prevention efforts.
Dr Michael Bukenya, the parliamentary health committee chairperson said HIV infection remains highly stigmatised throughout Uganda despite the increasing availability of treatment.
He revealed although stigma is commonly described to be highly prevalent in especially in rural areas, none of these studies have employed validated scales for measurement and that the trend of increasing stigma among PLHIV presenting for ART initiation as well as persisting anticipated stigma among the general population.
“Despite the growing availability of ART, which has allowed increasing numbers of PLHIV to restore physical health and rehabilitate economically and socially, forms of stigma remain highly prevalent and could even worsen,” said Dr Bukenya.
He said as a parliamentary committee on health they underscore the need to better understand reasons for persistent stigma in the era of ART expansion and more effective methods to reduce stigma among PLHIV and in the general population.
Dr. Daniel Byamukama, the head of the Uganda AIDS Commission (UAC) says the problem of stigma and discrimination associated with HIV and AIDS and society’s attitude to it is still a big question that needs an answer.
While speaking at the launch of UNYPA its sixth annual Y+ Beauty Pageant Dr Byamugisha said stigma can be more lethal than the virus, and he is convinced that without addressing stigma, we shall never end HIV in Uganda.
“We need to address both the physiological and psychological needs of people living with HIV for us to go ahead successfully in the HIV/Aids fight,” said Dr Byamugisha.
Mr Nicholas Niwagaba, the UNYPA executive director, said UNYPA is pushing for young people living with HIV to live healthy and productive lives by religiously taking their medicine and living above stigma.
Mr Niwagaba says through The Y+ beauty pageant, they want to end stigma and discrimination by empowering young people with knowledge and advocacy skills that enable them lead the fight against the stigma.
He is seeking to crown brave, open minded and passionate young people who later support fellow young people to meaningfully engage and participate in programmes regardless of their HIV status.
“Young people have continuously faced frustrations from stigma and discrimination from their families, guardians, potential employers and the general public. This affects their uptake of HIV services at health facilities and fear to disclose due to violence and rejection,” Mr Niwagaba said.
According to Dr Nelson Musobo, the Uganda Aids Commission chairman, Uganda now aims at achieving 90 per cent diagnosis of all HIV-positive Ugandans, 90 per cent provision of antiretroviral therapy to those who need it and 90 per cent viral load suppression among those on antiretroviral therapy by 2020.
He says but for this to happen, there is an urgent need to end stigma by remove the blame from any discussion you may have with yourself, reminding yourself that HIV is a disease and not a moral consequence, by educating yourself about HIV using quality reference materials and that if you are afraid of opening to someone you know, start by calling an AIDS hotline.