Avoiding the wet couch cushions that sat directly beneath the hole in his ceiling and nervously holding onto his treatment booklet, the 45-year-old part-time builder, said: “I saw people on ARV and they were doing fine. That’s why I thought I would also do fine.”
Staring at the religious calendar with the words “Pray For Us,” printed in bold, Fred explained, “I wasn’t going to die like my wife.”
Fred was unaware of his wife’s status before she passed away, due to Tuberculosis, an Aids-related illness. He believes she brought HIV into their marriage because he often saw her secretly taking medicine.
“My wife did not tell me herself she was infected,” he said. “She was put on medicine; that’s when I realised she knew she was positive, but she refused to tell me.”
Since his wife passed on, eight years ago, Fred has known his HIV status and has been on treatment. Of his three children, only one daughter is HIV positive.
Fred says keeping up with treatment is a struggle. “Transportation is a problem, yet I am not supposed to miss treatment,” he said. But with the help of Namugongo Fund for Special Children (NFSC), he has received a lot of support.
Taking a bold step
After seeing his wife die, and realising that he was the only person left to take care of his children, Fred knew that seeking treatment was his only option.
“I was bold enough—I did not hide at any point,” he said. “I knew what I was going to pick was my life.”
Luckily, counsellors also heard his story and helped. The lack of a steady job, however, has led money to be scarce. Therefore, Fred uses his money to buy food for his family instead of transportation to get his medicine.
Fred’s behaviour in being brave enough to seek treatment and continue medication is uncommon among men. Most men rely on their wives to bring them medicine or they wait until it is too late to seek treatment.
According to Dr Lydia Mungherera, the executive director of Mama’s Club – which specialises in providing women with proper counselling and treatment services – waiting in long lines for treatment and the notion of being ill goes against the male African sociocultural norms of masculinity. Additionally, the focus on providing treatment services for women and not men has led to this increasing problem.
The social culture norms men are supposed to live by makes it a shame to be sick, she said.
With more than 1.4 million people living with HIV, 36 per cent of those infected, are men.
Although the exact number is unknown, only a small percentage of those in need of treatment are actually receiving it. With the continued African way of thinking, most Ugandan men do not seek treatment due to the stigma they face. “There is peer influence from other men,” Mungherera said. “What are you saying? You’re sick? You want to go for testing? Let the wife go there and blame her. It’s an African thing, the blame game.”
Women tend to have better health seeking behaviour, Mungherera noted. They receive treatment when they go for antenatal care and once there, health workers stress that women should bring their husbands or partners in for treatment too.
Considered top priority by health officials, women who bring their husbands in for testing and treatment are moved to an express lane. This allows them to move through the process quickly, so that they can get back to their daily lives.
“We have a problem bringing in the men, you find family support groups are supposed to have a family, but you find only women,” she said. “Where are the men?”
Despite this push for family treatment, men still find waiting in line a waste of time. With the pressures of being the breadwinner for the family, most men would rather have their wives go for treatment. This leads to more problems because sometimes men force their wives to share their medicine.
For single men, the incentive to seek treatment themselves is even lower. With different problems and few male-friendly counsellors, treatment does not seem beneficial.
“We concentrated so much on women, that I don’t know if we actually got it right in sensitising men,” Mungherera said.
Another reason men seek treatment less often is due to the availability of ARVs that led people to no longer look at HIV as a death sentence.
A doctor at the Infectious Disease Institute, Dr Alex Muganzi, stated that there is a large complacency issue among both genders.
In particular, men feel that antiretroviral drugs are a cure for HIV, but that is not the case.
“Now people look at HIV medicine as normal medicines that take people back to life and therefore, people no longer look at HIV as the dangerous disease that we looked at in the 90s,” he said.
If men contract HIV, they wait until the last minute to receive treatment. They believe the drugs will magically cure them and alleviate them of their health problems.
According to UNAIDS Country Director, Musa Bungudu, there are few non-governmental organisations (NGOs) geared towards men, such as, The Aids Support Organisation, Reproductive Health Uganda and Mildmay International, and these organisations only have small programmes that incorporate men in the treatment process.
“When we are addressing these issues, let’s try to see that we are more inclusive rather than exclusive,” Bungudu said in reference to the lack of male involvement during treatment.
Men’s issues are different from women’s. They need specific counselling because they have different problems, Bungudu stated, such as their sexual behaviour and financial status.
Men also require different medicine because many women having children are given a lifetime drug regimen, particularly for pregnant women called Option B.
“I don’t think there are many organisations that are targeted to mainly men,” he said.
The process of finding men in need of treatment is difficult too. In the end, they are found in different ways than women.
Many HIV positive women can be located during antenatal visits, but to find HIV-positive men, organisations have visited alcohol sipping locations and places of worship.
One such organisation, MenEngage has begun to educate and support men through the treatment process.
With a total of 10 countries in Africa with a MenEngage branch, the organisation still relies on the support of Mama’s Club.
Uganda representatives, Innocent Abaho, Monja Minsi and Vincent Kuule spoke of the work they are doing to help men live healthy lives.
“What we do to reach out to them in their respected areas is with messages,” Abaho said.
“How important it is to seek out early medical care, how important it is for them to accompany their pregnant women for antenatal care, why it’s important for them to get involved in health seeking behaviour with the family.”
Without proper education and support, specific male engagement organisations will see men continue to fall ill to HIV. Although Fred received proper treatment support from NFSC, he too has problems in continuing his treatment.
“Sometimes things are not so good pocket-wise,” Fred said. “We are not able to get food before swallowing the drugs. So we sometimes take the drugs without a proper meal.” But he is insistent that fellow men infected, get treatment.
“Men should take care of their lives by testing because even when they realise they are HIV negative it helps them keep more safe and when they realise they are positive, it helps them get treatment,” he said.
Why men are vulnerable
MenEngage agreed that psychosocial stigmas, in combination with a larger focus on bringing women treatment, have continued to leave men vulnerable.
As such, they have focused their efforts on making men aware of locations where men treatment services can be provided, such as service centres, private clinics, mobile health clinics, radio stations, media outlets and places of worships.
The organisation also strives to comfort men throughout the treatment process and provide support throughout the process.
“Even men they are vulnerable, men have their concerns, they need to be addressed,” Minsi said.
Without organisations like MenEngage, the continuation of stubborn male attitudes, lack of male initiative to seek treatment, and focus on women receiving treatment will remain.
“Before we eliminate HIV, I think men need to get involved,” Minsi said.
Helping men get treatment
The MenEngage Uganda Network started in 2010, with similar programmes throughout the world. Partnering with Mama’s Club, which focuses on bringing proper HIV treatment and counselling to women, MenEngage was created to address the same problems, but for men.
Together, these organisations have created strategies to address men who are unaware of their status or too stubborn to seek HIV treatment.
Realising that men were not seeking the proper antiretroviral medication and counselling, the organisation started programmes to combat this problem.
“Men are not considered to be one of the vulnerable groups in the country,“ MenEngage officer, Monja Minsi said. And yet, having treated over 1,000 men, the organisation still struggles to reach out to men in need.
According to the organisation, some of the reasons men avoid treatment include:
• Men’s character: Men are often considered the stronger sex, and getting sick would be a sign of weakness.
• Unfriendly services: Due to the large number of women seeking treatment, counsellors are better equipped to deal with women’s problems.
• Ignorance: Men oftentimes ignore their illness.
• Blame: When found to be HIV positive, men tend to blame their spouses. Women are the ones who seek treatment, and when they return home, they are often forced by their husbands to share medicine, causing problems for both.
• Attitude: Men would rather solve the problem themselves than rely on others. Seeking help would be a sign of failure.
• Tradition: Men in rural areas often continue to rely on traditional medicine that does not effectively decrease viral loads.
• Insufficient funds: Men do not always realise that treatment services can be free. They preoccupy themselves with providing for the family and believe they can avoid the medicine.
• Time: Men feel that working is a better use of their time and that the treatment process takes too long.
How to help the male fraternity
To reverse these stigmas, MenEngage has created solutions that they believe will get men involved in the treatment process. Although a few services are already working, many are still in the works.
• Religious Services: MenEngage stressed the support of religious leaders, such as priests and Imams to educate men about available services.
• Education: Men believe that HIV is not the deadly disease it used to be. Since the creation of ARVs and the lack correct information, men believe these medicines are a magic cure. They need to be educated on what the truth is.
• Mobile Health Clinics: Travelling clinics provide men in remote locations the opportunity to get tested and receive treatment.
• Radio and television campaigns: These media outlets reach men in all locations and have a large audience, educating people further.
• Family treatment: A newly implemented strategy throughout Uganda, family treatment allows men, women and child to receive treatment at once. Additionally, families are moved to an express line so they move through the treatment process faster.
• Male advocates: Without counsellors able to deal with the problems of men, MenEngage has created Male Champions and Mentor Fathers. These HIV positive men share their experiences with men who recently discovered their status. Together, they discuss concerns facing men and give suggestions on how to cope.