Survey finds HIV stigma reduced

Jun 13, 2016

Globally, stigma and discrimination are associated with lower uptake of HIV preventive services.

PIC:  Prof. Vinand Natulya, chair of Uganda AIDS Commission, speaks at the launch of the report. (Credit: Elvis Basudde)

If you asked James Kyambadde what he regards as the most difficult task in the world, he would, with little hesitation, say it is the fight against HIV/AIDS. But Kyambadde says that the struggle against HIV/AIDS will never succeed without addressing stigma.

"I have personally suffered external stigma and I know that stigma can be more lethal than the virus.  After both my parents succumbed to AIDS, my guardians could not stand me because I am HIV positive. They told me in my face that I was going to infect them with my virus," says the 19-year-old who was born with the virus.

He is now living with a Good Samaritan after his family being too hash on him.

The world has been fighting HIV/AIDS for over three decades now. Many countries have increased their response to address economic, political and social effects of the epidemic. Uganda alone is now an international model for a successful fight against HIV/AIDS.

But one critical question still hangs unanswered. The problem of stigma and discrimination associated with HIV/AIDS and society's attitude to it is still a big question that needs an answer. "We cannot get to Zeros, UNDAID's target, as long as stigma is still prevalent," says Prossy Luzige, an HIV activist.

Globally, stigma and discrimination are associated with lower uptake of HIV preventive services, including under- or non-participation in HIV information meetings and counseling and reduced participation in programs to prevent mother-to-child transmission.

A woman has her blood sample taken for HIV testing


The good news

According to the first ever two surveys on stigma, a baseline stigma survey (November 2014) and an end-line survey (December 2015), among people living with and affected by HIV, both internal and external HIV stigma has reduced by a big margin.

Internal stigma reduced to 35% down from 53.7% among people living with and affected by HIV. The original project intention was to reduce HIV stigma by 20%.

Out of the eight components that measure internal stigma, self-blame was mentioned by a relatively high proportion (19.7%) within the group which had internal stigma. Similarly, almost all components that measure external stigma equally reduced. For instance, gossip reduced to 30.6% from 48.7%, verbal insult reduced to 17% from 30.5%, and physical threats reduced to 6.8% from 14%.

The survey was conducted by Nsambya Home Care (NHC), Kitovu Mobile (KM) supported by the National Forum of People Living with HIV Networks in Uganda (NAFOPHANU). It received financial support from BET-365 and Catholic Agency For Overseas Development (CAFOD) Kenya.

In 2014, the incidences of stigma stood at 53.7% in the districts of Kampala, Masaka, Mukono, Wakiso, Sembabule and Kalungu. According to the report, there is a difference in the reduction levels of stigma by gender.

HIV stigma reduced more amongst the females than the males. By end-line, the proportion of females who reported stigma was 33% from 59% at baseline, while that of males reduced from 41% to 37%.

 "We did a baseline survey, followed by interventions using faith leaders and people living with HIV as change agents. 2,018 people living and affected with HIV were randomly sampled (1,380 females: 638 males) at baseline of which 1980 (1,440 females: 540 males) were followed up at end line," said Dr. Maria Nanyonga, coordinator at Nsambya Home Care.

A number of tailored interventions were put in place following the baseline study, and the outstanding one was the use of faith leaders to reach out to the masses in different settings and channels with messages and interpersonal communication geared towards creating self-esteem for the person living with HIV.

Nanyonga said ever since the Human Immunodeficiency Virus (HIV) pandemic began, stigma has been proven to be a major barrier to successful HIV prevention, care, and treatment, which often reinforces existing social inequalities based on gender, ethnicity, sexuality and culture globally.

Stella Kentusi, executive director of NAFOPHANU, regrets that it is tragic that 30 years later, stigma and discrimination continue to be major problems, even in an era where treatment for HIV is ever more accessible, and prevention of HIV is not only more possible, it is also critical.

She says that stigma among people living with HIV remains a critical barrier to access and utilize HIV services.

Most of the PLHIV experience self-stigma manifested by low self-esteem, feeling suicidal, sinful, should be punished and even self-aware of being gossiped about, among others.

"We are glad that the Stigma Index survey in central and south-western Uganda 2014-2015 has, for the first time, shown that we can indeed support PLHIV to reduce stigma. Reducing stigma by 34.7% is a great milestone. We should continue placing PLHIV at the centre of stigma reduction and bring on board all key players as the project did with faith leaders as change agents," said Kentusi.

Displaying copies of the report are, from left, UAC Prof. Vinand Nantulya, Mabel Kagonya Ogola (program officer-CAFOD) and Enid Wamami (director in charge of partnership-UAC). (Credit: Elvis Basudde) 


UNAIDS defines HIV-related stigma and discrimination as  a 'process of devaluation of people either living with HIV/ AIDS. Discrimination follows stigma and is the unfair and unjust treatment of an individual based on his or her real or perceived HIV status."

Internal stigma or self-stigmatization refers to the shame and expectation of discrimination by the person living with HIV himself, and prevents him from talking about his experiences and stops him seeking help, while external stigma/ discrimination involves unfair treatment from the public, and the attitudes they develop towards people living with HIV.

Report a 'landmark move'

While launching the report mid-last week at Green Valley Hotel in Gaba, Prof. Vinand Natulya, chair of Uganda AIDS Commission (UAC), said this is the first ever stigma index report for central and south western Uganda, regions with the highest burden of HIV in the country.

"The stigma report is a landmark move in the fight against HIV/AIDS in Uganda. What partners that participated in the survey have done is unprecedented because we now have measurable evidence to refer to regarding stigma and discrimination for those particular regions," he said.

He said the report is complementary to other recent AIDS indicator surveys the government and partners have undertaken.

The study is unique in that it was conducted after a baseline and it captures data on the people living with HIV regarding their lived experiences with access to HIV/AIDS treatment, social exclusion, disclosure of HIV status, having children and understanding of rights and laws as well overcoming stigma related challenges.

The anti-HIV Anti-Stigma and Discrimination Policy, being championed by Uganda AIDS Commission and NAFOPHANU, will go a long way in guiding our valuable partners as findings indicate persistent stigma levels at individual, family and work place.

Ntulya reiterated that Uganda is committed to driving towards zero new HIV infections, zero stigma and discrimination and zero AIDS-related deaths, and also committed to the strategy of "90-90-90 by 2020" where 90% of people living with HIV must be tested and know their status, 90% of those tested access treatment and 90% of those on treatment have their viral load suppressed by the year 2020.

"These targets must be achieved by the year 2020. But these nice-sounding targets will not be reached unless we aggressively address stigma and discrimination. The government is committed to ensuring that services are provided in a stigma-free environment to enable voluntary disclosure and easy access to available services," he said matter-of-factly.  

Why take HIV to pulpit?

Nanyonga says the role of religious leaders cannot be ignored in the fight against HIV, adding that they used them in the study because they thought these are respected people in the community.

She says that they discussed with religious leaders at all levels and they agreed to participate in  the fight against HIV/AIDS in delivering the messages they constructed.

Stigma and discrimination are among the messages which these religious leaders  delivered every Friday (Muslims), Saturday (Adventists) and Sunday (other religions) and at all religious functions. They are also going to work with the Inter-Religious Council for that matter.

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