Thursday, July 26, 2018

Communities Guard Health Rights if they Know How

By Esther Nakkazi

His only choice was to travel back home.

Geoffrey Bagenda, 40 years, had a combination of HIV and TB, and he wanted to go back to Namutumba, where he was born and raised.

He knew he was sick but suspected witchcraft which he battled to heal using all his life savings. His illness took a fierce hold on him. He could not walk. He would not eat. His family abandoned him. His own mother who lives in the same homestead never cared for him.

His family wished he could die and he did too.

He was abandoned in a small, dark room on the family land. Community members who always passed by Bagenda’s house because it is beside a narrow road on their way to a water source turned their noses up and speeded up to escape the horrible stench. They spoke in low tones about him as they did with others who suffer from HIV.

The community knew his mother and his other siblings very well. He worked at the central market in Kampala, carrying heavy 100-150 kilogram sacks of food that were brought in from the farms.

He should have been a strong man with a big body. But now his cheekbones were protruding, his eyes sunken and when he walked he had to hold onto his now too big trousers that were almost falling.

“I did not have anyone to help me out. My house was smelly. My appetite was gone. I was asking God to take me,” said Bagenda who came back to die where he was born. “I had a wife but.... She left. We had no children,” he said staring in space.

He could not have suspected the knock on his door. It persisted but he had no energy to call out for the visitor to open. Eventually, the door opened.

“A lady came in and asked me how I was doing. She promised to come back,” he narrated.

Hadijah Munabi heard the story about Bagenda at a community dialogue. She attends these because of her work. She was trained as a paralegal by the Uganda Network on Law, Ethics, and HIV/AIDS or UGANET. Munabi also has palliative care knowledge after being trained by the Palliative Care Association of Uganda (PCAU).

With support from TASO-Global Fund, the Uganda Network on Law, Ethics, and HIV or UGANET, is working in 18 districts of Uganda to engage duty bearers and stakeholders on how to respond to Gender-Based Violence through different interventions.

“When UGANET trained us they taught us to identify such cases because that is violence,” said Munabi who identified this case as emotional violence because Bagenda was discriminated and stigmatised. She was also trained on other forms of Gender-based violence, which is rampant in this community.

“UGANET has helped me advocate for human rights and helped us fight against stigma in our daily work plan,” said Munabi.

When she went back to Bagenda’s house the next day she had a bucket, gloves, antiseptic detergents and a broom. She cleaned the house and they talked about his health.

Although he told the UGANET team he thought it was witchcraft, Munabi said Bagenda actually knew his HIV status but had skipped taking his anti-HIV drugs for a long time, making the disease to take a fierce turn and unfortunately getting a co-infection with TB.

Her first instinct was to go and report the case to Susan Achen, a UGANET legal aid officer based in Namutumba town. They both rode back to Bagenda’s house to assess the situation and map a way forward.

“Madam Susan looked at me and asked how I was feeling. I told her I was in a terrible condition and didn't have anyone to care for me,” said Bagenda. Achen assured him that everything would be taken care of.

Indeed, the next day Munabi came with a boda-boda guy (motorcycle) and they took him to a health facility where he was given a TB and HIV test, which were both positive. However, the anti-HIV drugs at the facility were out of stock so Bagenda was promised to start medication on his second visit due two weeks later. He was started on TB drugs.

UGANET acts as a link of patients of this nature to the facility. One of our roles is human rights and palliative care. Although our major role is to give legal advise it is difficult if the clients are in pain,” said Achen.

As a UGANET community paralegal, Munabi had to pick TB drugs for Bagenda, she took him some porridge, cleaned his house and asked after his health. She spent weeks on these tasks every other day making her way to his house and telling him the same thing; you will be fine but you have to take your drugs diligently.

From 29 kgs when he started treatment to 36 kgs and now 43 kgs Bagenda is gaining weight. His Tuberculosis is gone and he is not infectious anymore. He can wash his clothes and dig away the bush that had grown in-front of his front door step.

UGANET gives legal advice to people who suffer from violence; 
Achen also visited occasionally but the UGANET office where she is in charge provided the funds to facilitate Bagenda to go the health facility and Munobi to do her work.

UGANET in partnership with PCAU promotes the health rights of palliative care patients in communities. It may not be legal but Achen knows that this cannot be ignored and that is part of her job.

“Many palliative care patients have concerns with their children, estates and want to deal with the question of their property. We sit with them and help them write a will,” said Achen.

The after effect of this has been noticed by their health providers. They say these people are happier because in a way they have made peace that they might not be around much longer, explained Achen.

But integrating legal aid into palliative care has its challenges. Not many people think that palliative care patients have rights, that they have a right to be heard and make decisions themselves. Often times caretakers tend to influence them.

So the first step is to get rid of the pain because when caretakers control who comes in to see a patient who is confined to a bed or a house, they dictate to them what they can say, said Achen. At this point, the patients are unwell, tired and have no knowledge of what is going on.

Sited outside his clean house and his washed clothes drying on the wash-line, Bagenda has enough energy and appetite. “Now I can stand and sit outside my house. I eat and I feel better,” he said.

“Now the community knows that a sick person can have his health restored but he needs to be supported not abandoned,” says Munabi.

This feature was produced by Esther Nakkazi for UGANET highlighting domestic violence and health rights

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