A parents’ commitment to treatment saved their 2 children from TB

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Tuberculosis (TB) is a tough infectious disease. But it is possible for total recovery and elimination of the disease from communities when patients adhere to treatment.

In February 2022, Evelyn Tabai, then five years old started coughing. Her mother Teddy Nansubuga, never expected a return to Mbale Regional Referral Hospital to care for her as a TB patient.

For a month, she had twice cared for her partner Paul Ocan at Mbale Hospital when he suffered drug resistant TB in March 2019 and January 2020. Each time, she continued supporting to receive nine months of treatment support from Kerekeni HC III, Butebo District, Eastern Uganda.

“It was not easy. Each time it happened, we were not prepared. I heard about TB the first time my partner fell ill,” says Nansubuga. “But I had to be firm. I prayed to God for strength.”

Nansubuga and Ocan, residents of Kabekuni village, Kakoro Parish, Kakoro Sub-County, Butebo District, Eastern Uganda first bought tablets to ward off Tabai’s cough. But Tabai fond of her baby brother Jotham Odemuni, would no longer carry him as often as she used to. At the time, Odemuni was seven months old. The parents bought some medication from nearby drug shops but Tabai continued to lose weight and became weak. Odemuni followed suit.

“When I saw the signs, I suspected that my children had got TB,” says Nansibuga. “I asked my partner to take them for testing. We went to Mbale Hospital direct to get them tested. They were both positive for DR TB,” says Nansubuga.

Nansubuga remained at Mbale Hospital with the infants and Ocan returned home and transported his older two children to the in the regional drug resistant TB treatment centre for TB testing. Fortunately, these two were both negative.

Both infants were admitted to Mbale Hospital for a month, with their mother as their caretaker. Ocan stayed home with the older children.

“When the tests for Evelyn and Jotham came back positive, I worried about them completing the medication. I know how tough those drugs can be,” says Ocan.

In Mbale Hospital Nansubuga endeavored to care for the children in the same manner she did when her partner was ill. The children took their medication on time, and ate food regularly. Even when they developed joint and back pain and headaches at the start of their treatment, Nansubuga continued giving them the drugs.

When the children were discharged from Mbale Hospital the Butebo District TB and Leprosy Supervisor, Adam Mukenye arranged for a meeting for the Kakoro HC III health workers where Tabai and Odemuni were to complete their nine-month treatment. Brenda Katengeke a Community Health Worker at the facility was chosen to support the family in their treatment journey. Baylor-Uganda trained community health workers like Katengeke to support TB and HIV clients to adhere to treatment. Every morning, one of the parents took the children to Kakoro HC III for drugs.

“They were very cooperative. The mother was very keen on her children’s treatment. Any time I forgot, she would remind me,” says Katengeke.

The children are due for another review in June. But preliminary tests indicate that both children are TB-free. Saving on the transport refund received from the Global Fund to fight AIDS and Tuberculosis and Malaria through the The AIDS Support Organization (TASO), the parents received to Mbale Hospital, they started rearing pigs. The piglets are sold to cater for the children’s school fees, says Nansubuga.

Says Ocan: “I am happy. I can now do all my work. My children get an occasional cough but it soon disappears. I know my children are okay. I had not got help I would have sold my land to treat them. Someone who gives you money for and supports you through illness and treatment offers you a life.

The Ministry of Health estimates Uganda’s tuberculosis (TB) disease incidence at 330 cases per 100,000 population. Thus, it is crucial to detect early and for patients to adhere to treatment adherence to eliminate TB from communities.

Just like for Hamza Betebe, a resident of Sidanyi village, Sidanyi Parish, Petete Sub-County, Butebo District, Eastern Uganda. For two months, a strenuous cough rocked Betebe’s chest. He suffered joint aches, had night sweats and his skin pigment lightened. He felt cold all the time and lost weight.

“It was difficult to breathe. I felt like I was carrying a heavy load,” recalls the 60-year-old.

Between April and June 2021, Betebe bought antibiotics and painkillers from nearby drug shops. A few times he got relief, but the pain reoccurred within a short time.

“At first I was worried that he had been infected with HIV like everyone was gossiping,” says Zaituna Christine Katemu, Betebe’s partner.

Since Betebe grew weak and could no longer work, he soon ran out of money. And he became bedridden.

“Whenever I visited him, I saw him coughing. I advised him to go to Nagwere HC III for help,” says Ben Bwini, a Volunteer at Nagwere HC III.

“Because Betebe came coughing seriously, we suspected that he was suffering from TB. We sent him to Mbale for an X-ray test,” says Kasan Ogu, a Lab Technician at Nagwere HC III, in Butebo District.

Said Betebe: “I didn’t know how TB is spread. I asked my mother if I had got the disease as a child. She said no. When the Mbale doctors confirmed that I had TB, I worried that I would die. My friend had got TB and was dead after two years.”

Katemu recalls how Betebe used to move with a container in which to spit. When the x-ray came out positive, she agonized about the family’s source of funds to support him during treatment.

A few days later after the x-ray test, Betebe returned to Sidanyi and started his nine months treatment journey. Within weeks, the painful cough disappeared. His appetite returned and he regained his strength.

Ogu says Betebe was a good patient, who adhered to the treatment. And whenever the facility team went to his home to check on him, it found that he had taken to heart the advice they had given him. Betebe used to sleep alone to avoid coinfecting other family members.

“I used to encourage him to take his drugs. He is my childhood friend. I wanted him to live longer,” says Bwini.

In February 2023, Betebe was re-tested for TB. The test confirmed that he was TB free. “With the help of organizations like USAID, we can support TB patients. Otherwise, many would die,” says Ogu.

“I am now changed. I thank Baylor-[Uganda] for checking on me. Coming to my home shows it cares,” says Betebe.

Viral load suppression among HIV clients is crucial for stemming the spread of the pandemic. Regular viral load testing is one of the services that the Ministry of Health recommends that an HIV client must get all services at a health center. One such client with suppressed viral load who receive all services at Iki-Iki HC III Budaka District, is Mr. Yakobo Ekurani, of Buloki village, Iki-Iki sub county, Budaka District, Eastern Uganda.

Overview

The World Health Organization recommends voluntary medical male circumcision (VMMC) as a medical procedure for reducing the risk of heterosexual HIV transmission by up to 60 per cent. Free voluntary medical male circumcision (VMMC) has been free in Uganda since 2010. The USAID Local Partner Health Services in Eastern Uganda (LPHS-E) partners with district and facility teams to offer VMMC services in 21 health sites in Bukedi, Bugisu and Sebei sub-regions in Eastern Uganda.

The problem

In  2021 USAID Regional Health Integration to Enhance Services in Eastern Uganda (RHITES-E) halted VMMC activities in Nabiganda Health Center IV in Butaleja District, following an audit. The audit discovered irregularities in VMMC activities such as poor logistical and supply management, tracking of stock and requisition and circumcision of non-eligible males who were less than 14 years old. The auditors also discovered non-uniformity in the documentation process.

“We felt cheated when they closed us down. But this was due to internal wrangles we had with some district officials,” recalls Peter James Esodoit, a Surgeon at Nabiganda HC IV.

The supplies, guidelines and standard operating procedures (SOPs) were withdrawn from the site. After the closure of Nabiganda, only one site, Busolwe Hospital was authorized to offer VMMC services in Butaleja District.

In addition, the region lacked sufficient skilled personnel to conduct VMC services, “recalls Allan Musitwa, a Quality Assurance Officer for USAID Local Partner Health Services in Eastern Uganda (LPHS-E).

In October 2021, Nabiganda was assigned a target of 516 VMMC clients. “When I heard that the site had a target, I was anxious. How would I overcome the challenges the site was facing,” says Musitwa.

At first, Musitwa assigned the target to another site that was excelling. But the HIV Prevention Manager advised him to engage Nabiganda health workers. The target could not be reallocated.

Strategies implemented

In February 2022, Musitwa made an appointment with the District Health Educator of Nabiganda HC IV to discuss the reopening of the site. “The team was not new to me. I had worked with them before in a different capacity. For me it was personal. I didn’t want them to fail,” says Musitwa.

An entry meeting for all Safe Medical Circumcision (SMC) service providers discussed what happened before the closure of the site. The meeting discovered that the site lacked the capacity in offering VMMC services because the previous team had transferred out after the closure. A VMMC team comprises of a surgeon, an assistant surgeon and a counsellor.

USAID LPHS-E scheduled a backup team for the site to attend a training organised by Rakai Health Sciences Program in April 2022. During eight days, the team was trained on different surgical skills. To obtain a certificate, a surgeon needed to operate on ten successful cases.

The team learnt mobilisation and demand creation skills such as door-to-door mobilization, using women to mobilize for eligible men, entry points at facilities, and satisfied clients among others. It learnt how to manage adverse events of a circumcised case and follow up of clients. LPHS-E took the team through stock management, filling stock cards and ensuring that the site had a designated store for keeping the supplies.

After the training, the facility team re-organised itself and bridged the gap that existed between it and the district. It started engaging the sub-district and assigned roles amongst themselves. The District HIV Focal Person was co-opted to supervise SMC services at the site.

Following the training, LPHS-E and the facility team re-engaged the community mobilisers to conduct outreaches. Abdul Zacharia Gesa, a Counsellor at Nabiganda was among the mobilizers whom the Activity took through a one-day orientation to counter myths such as VMMC causing impotence.

“The people believed that if a surgeon stops bleeding the skin will peel off making the penis crooked during the healing process. The other myth was that the penis’ shape would be lost if the threads are not removed.

“We considered Village Health Team (VHTs) members who are closer to the cultural institutions. The link to the cultural institutions helped break barriers,” says Esodoit, the Lead VMMC Surgeon at Nabiganda HC IV.

The cultural leaders (Batusa) are very influential in each of the 239 clans they lead including non-Banyole in Bunyole area.

The team co-opted VHTs from other departments like ANC to talk about circumcision. The mobilizers used megaphones in trading centres, drinking joints and religious institutions to rally people for the VMMC outreaches. LPHS facilitated each VHT for each client that was circumcised. The VHTs also conduct home visits where one family member convinces others to undertake VMMC services.

LPHS-E continues to facilitate the facility and VHTs to mobilise in schools and tertiary institutions through headteachers. The Activity has mentored the facility team to do full documentation of clients circumcised including properly seeking consent from the clients during the outreaches. LPHS mentored the team on weekly data reporting on numbers circumcised. It advised the team on filling out consent forms on-site.

To date, the team holds regular meetings to discuss any adverse event and strategize for quality improvement. If a client has suffered an adverse event, his history of counselling, assessment, operation and the post-surgery period.

“Follow up of clients in their homes is another mobilisation strategy. When neighbours see us visiting the client, they envy him. Because they too desire to have high profile people visit their homes, they come for VMMC,” says Esodoit.

The site received 25 circumcisions on February 21, 2022, after the entry meeting. The numbers kept rising and by May 2022, the site had attained its annual target. In FY22 when the USAID LPHS-E assessed the site and found a few gaps such as health education materials missing in the facility. It had no minutes during the facility meetings. The team attained 85 per cent. It engaged a senior surgeon from Busolwe Hospital and gained learnings that enabled them to fill the identified gaps.

In October 2022, the Ministry of Health assessed the facility again. It scored 100 per cent. For COP 2022, Nabiganda’s target was doubled from 516 to 1360 clients. By December 2022, the site had achieved 48 per cent of its COP 22 target. Since the re-opening, a total of 1,281 circumcisions have occurred at Nabiganda HCIV.

The success of the VMMC services in the area has attracted VHTs like Paul Were, a VHT in Luheje village, Luheje Ward, Butaleja Town Council to join the team. Were, form er Counsellor saw VMMC posters in the facility and approached the VMMC focal person at the facility to become a mobiliser. The facility team welcomed him. To date, Were has successfully mobilised approximately 180 clients for circumcision. Among them is Joseph Olota aged 42 years.

For a long time, Olota a private security guard at a hotel and confectionary establishment near Nabiganda desired to be circumcised but because of the nature of his job, he always missed out. “Every time I wanted to get circumcised I was transferred to another location. I kept suffering STDs [sexually transmitted diseases] like gonorrhoea and syphilis,” says Olota.

On December 8, 2023, Olata overheard Were interacting with adolescents nearby, he asked them what they were discussing. When he heard that it was circumcision, he left his workplace that day in search of Were. He counselled Olota about the merits of circumcision.

“This was the chance I had been praying for. The surgeon asked me twice if I was sure I wanted the operation and I said yes,” says Olota.

He got circumcised that afternoon. “At first I feared but I knew it was good for my health. And it was painless,” he says.

A few days later, he broke the news about his situation to his colleagues. A few days, three of them walked into Nabiganda HCIV for circumcision.

Conclusion

Commitment from facilities, VHTs with support from USAID LPHS-E coupled with different strategies enabled Nabiganda HC IV to change its negative picture to a successful site from which others can learn.

For a month, Eddy Nguhuni, a head teacher at Bwirya Primary School, in Namanfovu sub-county, Butaleja District, Eastern Uganda suffered a persistent dry cough.

“My chest hurt and I had lost my appetite. At night, I would wake up drenched in sweat. I dropped weight from 90 kg to 78kg. “I was very weak. I couldn’t even lift five kilograms,” says Nguhuni,

In March 2022, Nguhuni returned to Busolwe General Hospital, Butaleja District, which provides comprehensive TB ad HIV services through USAID LPHS-E implemented by Baylor-Uganda.

“He thought it was malaria. But I counselled him about finding the real cause,” says Charles Okia, the TB Focal Person of Butaleja District. “We provide all hospital attendees with TB screening services irrespective of the reason for visiting the Hospital”

Because Nguhuni could not cough any sputum, a urine sample was taken from him to test for TB. It turned positive for TB. Nguhuni started a six months treatment immediately.

“I am lucky that it was my wife only at home when I got the news. The children were at school at the time. Otherwise, they too would have been at risk of infection,” says Nguhuni.

Nguhuni agreed to start six months of treatment immediately, taking tablets. “I was not scared that I couldn’t heal. I saw my brother who had suffered TB healed once he completed his treatment” he says.

With support from USAID LPHS-E, Okia conducted contact tracing in Bwirya days after Nguhuni was diagnosed. Fortunately, neither his wife nor his neighbors tested positive for TB. The wife supported him during his treatment journey.

“Often, I visited his home to encourage him to adhere to the treatment. says Patrick Wasana, a Community Health Worker and TB survivor attached to Busolwe General Hospital.

Within months, the cough disappeared. He regained his appetite, followed by weight gain. After six months, Nguhuni had returned to Busolwe Hospital for a sputum test. “I was TB free but I had to continue with treatment for another six months to prevent future disease,” he says.

“In August 2022, I completed TB prevention medication. I have stabilized my weight at 85 kg. And no longer suffer any complication,” says Nguhuni. “I take every opportunity to tell people I interact with about TB, and how available and safe the treatment is. Thanks to the dedicated staff at Busolwe Hospital.”

Nguhini is among the 447 TB patients whom LPHS-E has supported to successfully complete their treatment since October 2021 to date.

“Thank you  USAID LPHS-E Baylor for committing to ending TB, and supporting community TB activities to reach those unable to come to Busolwe Hospital” says Okia.