As sub-Saharan African countries introduce more anti-homosexuality bills, there are concerns they could create a barrier to the LGBTQI+ community being able to access healthcare and research.
The Parliament of Ghana passed the Human Sexual Rights and Ghanaian Family Values Bill on 28 February 2024 which criminalises LGBTQI+ relationships, as well as people who support LGBTQI+ rights.
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The bill was passed in April, but the court struck down sections which restricted healthcare access for LGBTQI+ people and created an obligation to report alleged acts of homosexuality after intervention by groups, including researchers in Ghana.
In Kenya, a bill before Parliament seeks to ban gay relationships, same-sex unions and LGBTQI+ activities and campaigns. In all instances, the bills propose harsh prison sentences and hefty fines.
One of the main disease areas in which it is vital to include patients from gender and sexual minorities in research is HIV and AIDS due to the prevalence within the community.
This week, researchers in the HIV and AIDS space will come together at AIDS 2024, the 25th International AIDS Conference taking place in Munich, Germany, to discuss ongoing challenges in the treatment and research space.
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By GlobalDataAccess to HIV medication has been a challenge for gender and sexual minorities in these countries, mostly due to the stigma associated with the disease, but as laws become stricter, there are fears in the healthcare community that this could further block access to life-saving drugs and impede research efforts.
Recent drop in HIV research across the continent
Data from GlobalData’s Pharmaceutical Intelligence Center reports a significant drop in HIV trials initiated in African countries, with a peak in 2021 and the lowest number just two years later in 2023.
Several countries where the bills are in place, including Morocco and Libya, have not run any HIV or HIV-associated clinical trials in the past decade.
Despite having some of the strictest laws on the continent, Uganda had the most HIV trials of any African country, with 103 initiations since 2013.
Before Uganda's Anti-Homosexuality Act was introduced in March 2023, research discussed at the 12th International AIDS Society Conference on HIV Science (IAS 2023) in Brisbane from 23-26 July 2023, showed that prior to the introduction, drop-in centres which provide HIV prevention and treatment services saw an average of 40 clients per week.
After the bill was first discussed in parliament, drop-in centres saw an average of two clients per week.
Across the continent, there are very few company-led trials, with institution-led studies being the main contributor year-upon-year at more than 60% every year and more than 95% of HIV trials initiated with sites in Africa being institution-led in 2018.
Company-led trials only account for around 5% of trials initiated in 2023 but a decade earlier, companies were leading 20% of trials in the continent, which could indicate some sponsor apprehension over the past decade.
GlobalData is the parent company of the Clinical Trials Arena.
Researchers must protect patients
In Uganda, the 2023 bill included sections which restricted healthcare access for LGBT people and criminalised renting premises to LGBT people. It also created an obligation to report alleged acts of homosexuality. There were also similar sections in the Ghana bill.
These parts of the bills, from both Uganda and Ghana, were overturned, in part thanks to researchers like Dr. Cissy Kityo, executive director of the Joint Clinical Research Centre, a government-owned medical research institution in Uganda, specialising in HIV/AIDS treatment and management.
“When the act was introduced, I think many communities, and especially those from LGBTQI+ communities were worried about being discriminated against. In fact, researchers were important in turning parts of the act over,” Kityo explains.
There is likely still fear within the communities, however it is more important than ever for patients to understand the Good Clinical Practice guidelines which are internationally recognised frameworks that physicians must follow. These practices mean that researchers have a duty to put patient safety first.
Xoli Belgrave, senior director and head of Clinical Trial Diversity and Inclusion at global contract research organisation Parexel, says that fear will have an impact on patients enrolling in these trials as they will have concerns about their data being shared or leaked.
“Patients are understandably concerned about data protection. It is in fact a big reason why some patients don't participate in trials because they are afraid about their data safety. As healthcare providers and as industry, we need to do a better job of communicating with patients about their data journey during a trial and explain how early their data is anonymised,” Belgrave says.
The Good Clinical Practice directive states that researchers are told not to discriminate against patients from the community, says Kityo, who has been in the HIV/AIDS research space for 20 years, adding that researchers do not ask a person’s sexual orientation in Uganda.
“We target high-risk populations for vaccine trials. They might they have fears coming to us, but I can’t say that for sure. What I want to assure is for our general research, for therapeutic interventions in HIV for prevention, we don't need a person’s sexual orientation. We don’t collect that data as we are not going to use it for anything,” Kityo adds.
Sharing her personal opinions on HIV trials in Uganda, Paula Munderi, director of HIV Prevention at UNAIDS, Munderi says that it is important that researchers bend over backwards to protect patients, adding that if patients do not understand this protection, they may have apprehensions when taking part in research.
“It is also very much dependent on the clinical research and the robustness and the reliability of the institution. Research must always bend over backwards to protect the subject, data confidentiality, and personal information and be as informative as possible to participants. It will also depend on the extent in which private data is protected and the extent to which the research institution gives this reassurance to potential participants,” Munderi explains.
Stigma may be a bigger barrier
One of the main barriers acknowledged by those in the industry is the stigma associated with HIV and how being involved in research in this space could bring stigma to the patient, no matter their sexual orientation.
“With HIV as a disease, there are stigmas within stigmas. Firstly, you have the stigma of having an illness because in many African countries, sickness has its own associations. Then there's a stigma of that sickness being related to HIV because then that brings lifestyle judgment no matter your sexuality. Then you add in the requirement to participate in a clinical trial in areas where the general education about clinical trials is not good. Then you are adding that you need to trust that physician with that information about you,” Belgrave explains. “There's so many layers of culture and stigma, even without being a gender or sexual minority.”
There is a lot of working going on in the space to try and remove the stigma associated with the disease, but Munderi acknowledges it is not an overnight job.
“It can start by not having places that are easily identifiable, have HIV centres within general health care and not labelled. Ultimately however, it is a behaviour and attitude change that is needed and that is what takes time,” Munderi says.
“It does work better and quicker in communities that have been heavily affected by HIV then in communities where it's a rare disease. If the prevalence is high, there's a lot less stigma than in countries where it's a rarity and it's possible to point a finger at a person. It's very difficult to point a finger when you've experienced it up close in family and friends, but the fight continues.”
