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The true cost of discrimination

Punitive laws and practices are impeding HIV and TB responses in Africa

September 21^st, 2019

Advances in prevention and treatment of HIV and tuberculosis (TB) have saved millions of lives. But discriminatory attitudes and punitive laws, policies and practices are fueling the epidemics and driving people away from health services. And it is the most vulnerable paying the price. Without urgent action, the Sustainable Development Goals target of ending the HIV and TB epidemics by 2030 is destined to fail.

Rosa, Grace and Isaac tell their stories and suggest what can be done to turn this around.

ROSA: PROVIDING HEALTHCARE FOR THE MOST AT RISK

Rosa has been Sub-County TB and Leprosy Coordinator in Mombasa, Kenya for 19 years. She first experienced the impact of stigma while working at a TB hospital.

“One of my family members got a cough and the consultants couldn’t understand why antibiotics were not working. But TB had come to my home. It was the worst thing that could have happened”, she recalled. “I didn’t tell anyone”.

Throughout her career, Rosa has seen the devastating impact of discriminatory attitudes towards people living with TB: “I remember women with TB being chased out of the marital home, and one breast-feeding woman had her baby taken away from her.

People didn’t even want to hang their clothes on the same line as someone who had TB.”

Rosa’s work now focuses on ensuring access to health services for people who use drugs. For this high-risk population, social exclusion, poverty and potentially a history of imprisonment, create an environment where TB can quickly spread. But fear of discrimination and criminalization often drive people who use drugs underground, putting their lives, and the lives of those around them, in danger.

“People who use drugs are not accepted in most communities and by the time they decide to get support they have had TB for a long time. The reception by some healthcare workers may also not be positive, although this is improving,”she added.

Lengthy treatment regimens are difficult for people who use drugs to adhere to, which can make the role of a health worker demanding.

“When someone who uses drugs starts long-term treatment, you are aware the outcome may not always be good. We may be unable to follow up because the patients have moved on or they may have been locked up”, she said.

For Rosa, the answer lies in ensuring healthcare workers are trained to recognize the specific vulnerabilities that key populations face, encouraged to share their experiences, and mandated to provide care without judgement.

“People who use drugs are not less human than others.”

GRACE: EMPOWERING PEOPLE AT THE CENTRE OF THE EPIDEMIC

“HIV will be eliminated if we do the right things,” Grace Kamau explained.

“We fought for sex workers to be recognised but now we must focus on genuine engagement. Key populations need to be involved at a legal and policy level.”

As a sex worker, Grace has witnessed how punitive laws, such as those criminalizing sex work, drive stigma and discrimination. The result is that key populations – including gay men and other men who have sex with men, sex workers, transgender people, people who inject drugs, prisoners and other incarcerated people and migrants—become increasingly isolated.

“The fact sex work is illegal makes people shy away from accessing healthcare as they fear being arrested” she said.

“Sex workers must be involved in designing health programmes, so they can give their vision of how they should look.” While at University, Grace was introduced to a local sex worker clinic by her peers.

“The clinic really helped us. Before, we were focused on money and not safety. But they taught us ‘your health is your wealth’.”

Now, Grace visits other sex workers to share information on sex worker-friendly health clinics; run by sex workers, for sex workers.

“The issues of sex workers are not easy to explain in general clinics. For instance, if you go with recurring sexually transmitted diseases it can be difficult to express yourself. But at sex worker-friendly clinics there is no judgment,” she said.

Grace’s experience at a general clinic a few years ago was unfortunately not a positive one.

“They said ‘why do you need all those condoms? What are you going to do?’. I had to return them because I didn’t want the healthcare worker to keep questioning me.

The risk of acquiring HIV is 13 times higher for female sex workers than other adult women aged 15–49 years and 13 times higher for transgender women than other adults aged 15–49 years (Source: UNAIDS) © UNDP Djibouti / Aurélia Rusek

“Stigma and discrimination have led to me having unsafe sex.”

However, Grace feels the situation is improving and she is committed to helping bring about real change. Through attending regional forums on HIV, TB and the law, she connected with police and judges and now works to sensitize them on the issues facing sex workers.

“Telling my story has been very powerful.”

Isaac: Championing prisoners right to health

“People in prison are already stigmatized just by being ‘prisoners’. Then on top of this you may be HIV-positive; meaning you face double stigma”, explained Isaac Zimba, the Superintendent of Police at the Zambia Police Service and National HIV & AIDS Coordinator.

Many years of working with detainees has transformed his outlook, something he says is a privilege.

“My job has shown me the human face of HIV and TB. Before this I had very scant information and could have even been one of those who discriminate.

Early in my career, a colleague came out as HIV positive and began to speak about her status. It was the start of me looking at things in a different way.”

Overcrowding and inadequate sanitation and nutrition contribute to a dangerous prison environment. HIV rates in prison are as high as 50%, while TB incidence rates are on average 23 times higher than in the general population.

“In Zambia we have a lot of interventions in place to ensure detainees know their HIV or TB status. It has helped a lot. Looking ahead, I think we need more health officers working in prisons”, he concluded.

On the issue of human rights and prisoners, Isaac is resolute.

“A human rights approach is important for one simple reason. Regardless of being a prisoner you are still a human being.”

Isaac recognises the need to ground human rights-based approaches in reality.

The level of TB in prisons has been reported to be up to 100 times higher than that of the civilian population. (source: WHO) ©UNDP/Allan Gichigi

“We have laws that protect people from stigma and discrimination, but the challenge is implementing these valuable laws. It is not just a theoretical issue”, he said.

While he believes information and sensitization is key, he also recognises the progress already made.

“It is possible to change policies. A lot has been achieved in Zambia. But we still have a lot to do.”

Focusing the fight on rights

In 2018, 54 percent of new HIV infections globally were among key populations and their sexual partners, according to UNAIDS. An estimated four million people with TB were also missed by health systems in 2017– meaning they were not diagnosed or treated and it is estimated many of the ‘missing four million’ are among key, vulnerable or underserved populations.

To help address this, UNDP, the Kenya Legal and Ethical Issues Network on HIV & AIDS (KELIN) and the Global Fund to Fight Aids, Tuberculosis and Malaria (the Global Fund) recently joined with health workers, law enforcement officers and representatives from key populations to examine how discriminatory practices are fueling the HIV and TB epidemics in Africa and to identify collective solutions.

In line with the recommendations of the Global Commission on HIV and the Law, the forum highlighted the urgent need to tailor health services to key populations, and shared examples of good practices from across the region.