By John Unzima
West Nile-Tuberculosis patients require a non-stop taking of drugs and injections. No skipping of the swallowing tablets is allowed.
This requires commitment, patience and a moment of having faith to heal. But this comes with pain when the disease has become resistant to drugs. This makes some to lose hope and wail in pain as they have continued to face the wrath of isolation and trauma in communities.
After 24 months of taking tablets and injections the expert clients are taking on the fight against multidrug-resistant Tuberculosis (MDR-TB) in west Nile.
All recounting broken family ties and harsh isolation the expert clients say their fight against Tuberculosis is informed by the pain and agony they had experienced firsthand.
John Lonyi 43, father of nine says he has dedicated much of his time to fight Tuberculosis because he has already known the cost Tuberculosis has inflicted on him and his family.
“It was not easy, it was really hard, and I had to sell my only bull at Shillings 700,000 that time. It is because I want to live for more years and take care of my children,” Lonyi said.
Lonyi tested positive in 2012 and was declared cured in 2014. He has since enrolled as an expert client and a role model to others in dispensing service at Adjumani hospital.
“My work is to ensure that clients comply with medication as prescribed. I continue to give clients hope and this makes their lives improve,” Lonyi said.
Another expert client, Harriet Opideni 38, at Arua regional referral hospital said she has taken on the fight against MDR- TB as a national service.
“Because we tell our own experience they (new clients found with TB) listen to us more than Doctors,” Opideni added.
Opideni said the fight against Tuberculosis should take the way government fought Polio.
In Arua, a TB patient, Mr Draga Salim, said a person who develops TB is regarded a social out caste in most communities. He added that the families of TB patients tend to keep their problems under wraps and do not discuss them with their peers in the community.
“It is hard to disclose to friends because if you do so, they will run away and nick-name you. Thus TB remains a ‘personal issue’ rather than a community problem,” he said.
Who is an expert Client?
According to Dr Godfrey Manga Adjumani district Assistant DHO, an expert client is a person whose adherence to medication is 100 percent at the time of treatment and got cured as result.
“They are very useful in some cases they can be important than doctors because theirs is experience based,” Manga said.
There are five expert clients of MDR-TB and general Tuberculosis in West Nile. They work on voluntary basis.
Tuberculosis (TB) is an infectious disease caused by bacteria whose scientific name is Mycobacterium tuberculosis. It is transmitted primarily from person to person by breathing infected air during close contact.
The number of non-government-organizations (NGOs) working in TB control is also insignificant in the country. And now the society here remains insensitive to the issue and continues to regard TB control, as a government responsibility.
According to Inyani Mane Tuberculosis and Leprosy focal person Adjumani district MDR-TB is becoming the biggest public health concern in the West Nile.
In between January-March 2017, Adjumani district health office alone recorded three cases of MDR-TB compared to four cases recorded in 2016.
“The biggest obstacle for now is medication default other wise 6 out of seven known cases in the district are on medication,” Inyani said.
Inyani says Patients most often complain of pill burden others end up defaulting medication due to side effects associated with the drug.
Besides non-compliance to medication treatment for MDR-TB is very expensive and is only done at Arua Regional hospital donors.
Dr Christine Ondoa, former Health Minister during a visit to the TB ward in Arua. Photos by Felix Okello
Inyani also said they experience stock out TB drugs and transportation of patients to the Regional hospital.
The situation is exacerbated by inability by patients to meet their nutritional requirements a major cause of treatment default.
According to medical personnel, MDR-TB and HIV are closely related and the rate of co-infection in Adjumani district is high. Tuberculosis kills almost 60 percent of people living with HIV/Aids.
USAID-funding project code-named Strengthening Uganda’s System for Treating AIDs Nationally (SUSTAIN) is providing hope in the management of MDR-TB.
Through the project patients are able to get shillings 200,000 monthly for addressing nutritional challenges partly solving non-compliance to treatment.
“The biggest challenge was food while in treatment this intervention has improved response to treatment,” Lonyi added.
By December 2016 Arua regional referral hospital one of the eight MDR-TB support facility in Uganda registered 47 cases second to Mbale that has 73 cases according USAID/SUSTAIN.
Medical experts also say the low literacy rates and low per capita income in rural areas and urban slums adversely affect the treatment seeking behavior of TB patients and their families. The public health systems are unable to bear the entire burden of TB patients and are forced to seek treatment from private doctors.
49 million lives saved through effective diagnosis and treatment from 2000-2015.
480, 000 people developed multidrug-resistant tuberculosis (MDR-TB) in the world in 2015.
100, 000 people with rifampicin-resistant TB also required second line treatment in 2015.
2 billion US dollars per year needed to fill resource gap for implementing existing TB interventions.
This article is published with support of Acme Grant