Living and dying with tuberculosis

Living and dying with tuberculosis

Publication date: Feb 09, 2019

Patients share heartrending encounter with drug-resistant tuberculosis

The buzz about Bedaquiline

Tanimola begged her father to teach her to whistle. But much as he tried to teach her, she couldn’t. Her infant lips were too tender to hoot.

-She kept blowing air and bathing me with spittle,” said Folajimi David, her father.

Then, one Sunday evening, the five-year-old said, -Daddy, I can whistle with my chest.” To this, David responded with a smile, enthusing about how talented his little girl was.

He knew she couldn’t whistle with her chest. But -kids will always be kids,” thought the widower, craning his ear against her chest to hear it ‘whistle.’

All he could hear was the deep-seated wheezing that broke with her cough.

He blamed it on her inability to pass out the phlegm that was stuck in her chest. It’s one of the things she inherited from him, he thought; -I have never been able to cough out phlegm no matter how hard I tried,” he said.

Thinking she got that from him too, along with her looks, he gave her cough syrup, and then, a tincture of honey, bitter kola and mint.

But neither the cough syrup nor the potion provided relief to the five-year-old. She couldn’t sleep and she coughed through the night. By dawn, David noticed a spatter of blood on the bed sheet, at the spot she rested her head.

-Her symptoms got worse and she wheezed for breath like an asthmatic. But she had never been diagnosed of asthma. In the morning, she complained of fatigue, and collapsed on the way to the bathroom. That day, she didn’t go to school. I took her to a neighbourhood clinic from where she was referred to the Lagos teaching hospital,” he said.

Early diagnosis indicated that Tanimola had pneumonia and typhoid fever, for which she was treated. But her symptoms persisted.

-I became very scared when her teacher called, urging me to come for her; she said her cough had aggravated, and droplets of blood stained her teeth at every expiration,” said David.

Thus precisely eight days after she was treated at the teaching hospital, Tanimola was rushed to a private hospital, where lab tests and analysis revealed that she was infected by the Multi Drug Resistant strain of tuberculosis , widely known as MDR-TB.

David was diagnosed with the same disease, and father and daughter were advised to commence treatment at the state’s MDR-TB centre.

-We received the result late in the day, around 6.25 pm. There was no way we could report for treatment at that hour. I intended to take her to the clinic the following morning, which was a Tuesday,” said David.

But Tanimola would not make the trip with him. Seventeen minutes past midnight, she died in his arms.

David should have paid good mind to his daughter. Contrary to his belief, that, the five-year-old suffered a mild cough, she was in the advanced stages of MDR-TB. It wasn’t until she died, that, he understood the reason for her protracted cough and tiredness.

Today, David is -almost rid” of the disease. But he would never be rid of guilt.

The bereaved widower and his late daughter, however, represent a fraction of the country’s missing MDR-TB cases.

•An MDR-TB patient using his medication on the watch of a health officer at a DOT centre.

An awful way to die

Each year, nearly one and a half million people die from tuberculosis, that, for many years, has been treatable and curable. More than 30 million people have died since the World Health Organisation (WHO) declared TB as a global emergency in 1993.

The devastation wreaked by the disease is best captured in the anonymous quote: -When TB wakes up and gets into the lungs, it eats them from the inside out, slowly diminishing their capacity, causing the chest to fill up with blood and the liquid remains of the lungs.

-A wet, hacking cough is evocative of TB. The lungs, now in liquid form, are sloshing around in the chest. Cough that up, even in microscopic, impossible-to-see droplets, near other people, and they have a very good chance of getting TB too.

-Eventually, liquid replaces the lungs; the suffering patients cannot get enough oxygen, and respiratory failure occurs. They can no longer breathe and they drown. It’s painful. It’s drawn out. It’s an awful way to die. But before any of this happens, the disease weakens you. It diminishes your capacity for work, and puts your family and friends, and anyone else you come into contact with at risk. Individual death is only part of the problem.”

The bereaved family often inherits death from the deceased too. Or vice versa. In the case of the Davids, for instance, the father infected his daughter with the disease -because her immune system was very low, compared to his own,” said one of the doctors that attended to the deceased.

The typical pathway of the infection according to health experts is as follows:

When somebody coughs, it spreads through the sputum and then a susceptible host inhales it. If the person’s immune system is intact, the TB stays dormant in the lungs, without causing any harm to the body. But if the body’s immune system is compromised, the bacteria mutates aggressively in the body, corrupting and totally overwhelming the host’s immune system as a full blown infection. From a single host, TB can spread to infect between 10 and 12 people.

The progression is worse where the hosts dwell in a slum. It spreads rapidly, and assumes the state of a pandemic.

According to the 2017 Global TB Report, Nigeria is among the 14 high burden countries for TB, TB/HIV and MDR-TB. The country is also among the 10 countries that account for 64 percent of the global gap in TB case finding. India, Indonesia and Nigeria account for almost half of the total gap.

Nigeria is also ranked 7th among the 30 high drug-resistant tuberculosis (DR-TB) burden countries and second in Africa, with an estimated 4, 700 patients with multi drug-resistant-TB (MDR-TB) in 2015.

•A shanty kid picks her way through a river of filth in Makoko. The Lagos slum is widely known as a cesspit of diseases like tuberculosis.

Why TB persists…

Tuberculosis, widely adjudged to be a disease of the poor, is endemic in urban slums and communities, where the poverty level and population density is high.

-Most hospitals in the communities are, however, not equipped with TB care and that is where you have most of the cases. Also, most of the affected areas are hard to reach,” said Dr. Babawale Victor, a Senior Health Officer with the The National Tuberculosis and Leprosy Control Program (NTLCP), in a chat with The Nation.

Further findings revealed, that, while TB care services are supposed to be available at the Primary Health Centres (PHCs) across the country’s 774 local government areas (LGAs), they are absent in most of the target coverage areas.

Where PHCs are present, they are ill-equipped and understaffed to contain and treat TB patients, let alone MDR-TB sufferers.

Victor argued that prohibitive cost of treatment also delays and prevent individuals from initiating TB treatment after diagnosis. The dearth of paediatric TB specialists in areas most affected by the disease also poses an impediment to containment efforts, he said, stressing that, delay in reporting cases for treatment and lack of point-of-care laboratory capacity also hinder treatment and containment efforts, especially for multi drug-resistant TB.

A nurse at a Lagos based directly observed treatment (DOT) centre revealed, that, in order to encourage patients to complete the full course of treatment, they are provided some token for transport fare and meals. After the intensive phase, patients are allowed to return home for the continuation phase of treatment.

Why paediatric TB goes neglected

Until very recently childhood TB has not been a priority in public health and has remained essentially a hidden pandemic. All too often, paediatric TB goes undiagnosed in children.

While high-income countries now use sophisticated molecular tests to detect the disease, most developing countries, Nigerian inclusive, still use the method developed 130 years ago: the patient must cough up a sample of sputum, which is then checked under the microscope for the bacteria that causes TB.

Young children, generally, are unable to produce a sample. Even if a child with active TB succeeds in providing a sample, it often contains no detectable bacteria.

Compounding difficulties with diagnosis is the fact that children with TB have families that are poor, lack knowledge about the disease and live in communities with limited access to health care.

•TB bacteria inside the human body.

The burden of stigmatisation

Isa Mahmud, 35, was forbidden from using the same cutlery with his parents and siblings, soon after he was diagnosed with TB.

-Even after I started treatment, they kept their distance from me. My brothers stopped sleeping in the same room with me and my mother turned her face away from me whenever she had to talk to me, even after using a nose mask. I have been treated like a leper. They don’t even tell me sorry anymore, when I cough. Instead they frown and hiss. Sometimes, I feel like killing myself,” he said.

Experiences like Mahmud’s have often led to non-disclosure of illness by TB patients. Even while the chronic cough persists, some simply explain it away as -chest problem.”

Patients also dread being quarantined in the hospital, often likening it to a jail cell.

-They will make you feel like a condemned prisoner. The nurses are particularly careless in thought and speech. They shout at you and treat you like a hardened criminal. They make you feel like you are doomed for death,” said Gladys Onuh, who quit treatment at a Lagos Direct Observation Treatment (DOT) facility to patronise a herbal doctor.

The ugliness of hospital based care

A typical ward in Nigeria would contain 24 patients with MDR-TB, who should be cared for by 10 specially trained nurses running shifts, where they provide 100 per cent of their time for this service. Additionally, doctors attend to patients for about 15 minutes weekly. This depicts an ideal situation.

In reality, patients complain of stigmatisation by doctors, nurses and other health officers. Princewill Okeh, an outpatient in a treatment facility in the southern part of the country, complained that many TB sufferers are reluctant to come forward due to the hostility they might experience from public health officers.

-It’s one thing to be maltreated by your family but when government doctors and nurses also treat you badly, you lose hope in the system. This disease (MDR-TB) will make nurses and doctors avoid you. My girlfriend also has TB, but she would rather treat it from home. She has witnessed my experience with family and doctors and nurses. They all treat me like a demon. This is why she will never come to DOT for treatment. She is using home remedy and antibiotics,” he said.

Further findings revealed that some public health workers avoid the wards of MDR-TB patients thus leading to a fragmented bedside interaction and hindered service delivery.

In a recent Focused Group Discussion (FGD) conducted by health researchers, some participants recalled that healthcare providers in other facilities, which they visited for specialised services such as audiometry and chest X-ray avoided contact with MDR-TB patients and were more resentful than the healthcare providers at the

treatment centre.

They also stressed that it was disparaging and unfair for patients to use an inferior quality face mask while healthcare providers used a superior type.

-It is an inferior face mask. It is not a good type. It is the type they are selling in the market that they brought to us. They were using the better type. You see Nigerians! I argued with them seriously. They said, I argue too much because I am educated,” said a 54-year-old male patient.

The cost factor

Management of identified MDR-TB cases is based on a standardised WHO approved treatment regimen of 20 months, consisting of an eight-month intensive phase and a 12-month continuation phase.

Patients are placed on Pyrazinamide and four second-line anti-TB drugs namely Levofloxacin, Kanamycin (replaced by Capreomycin when indicated), Prothionamide

and Cycloserine. The five drugs are used for the eight-month intensive phase, at the end of which Kanamycin (or Capreomycin) is discontinued for the remaining 12-month continuation phase.

A recent study revealed that three models of MDR-TB care were utilised in Nigeria between June 2013 and December 2014, and differed only in their eight-month intensive phase.

Patients treated under Model A, were hospitalized for the complete duration of the intensive phase; patients in Model B were hospitalised for a duration of five months in the intensive phase while patients treated under Model C received the complete

intensive phase treatment as ambulatory care in the community.

The estimated total cost of providing diagnostic and treatment care as outlined in the Nigerian MDR-TB guidelines, was $18, 528 (N2,927,464) per patient for Model A, $15, 159 (N2,395,070) per patient for Model B and $9, 425 (N1,489,080) per patient for Model C – all 2014 figures.

Although financing for care and prevention has increased over the last decade, there remains a funding gap – $2.3bn (lb1.74bn) in 2017. The biggest donor, the Global Fund to fight Aids, TB and Malaria, allocates just 18 per cent of its resources to fight the disease.

Babawale Victor

Is Bedaquiline the next-best elixir?

There is no gainsaying the emergence of multi-drug resistant tuberculosis (MDR-TB) has threatened the progress made in TB control globally; MDR-TB is the resistance to Rifampicin and Isoniazid, the most effective first line anti-TB drugs, by the disease.

Els Torreele, executive director of McE9decins Sans FronticE8res’ access campaign, said there has been a dearth of research and development (RD) over many years for adequate tools for diagnosis and treatment.

In the last few years, however, Bedaquiline (a bacterial drug belonging to a new class of antibiotics) has been released to treat patients with drug-resistant TB.

-Before Bedaquiline, the last drug we developed was before we put a man on the moon,” said Aaron Oxley, executive director of Results UK. -Unfortunately in TB – or fortunately now – things are about to get more expensive because we’re getting tools that actually work.”

Bedaquiline (BDQ) has a novel mechanism of action. It binds to mycobacterium tuberculosis ATP synthase, an enzyme that is essential for the generation of energy in the pathogen. Inhibiting ATP synthesis results in bactericidal activity. The atpE gene product (subunit c, a proton pump) is the target of Bedaquiline in mycobacteria.

The distinct target and mode of action of Bedaquiline minimises the potential for cross-resistance with existing anti-TB drugs thus the buzz about its efficacy and potency as an anti-MDR-TB nullifier.

Tackling the MDR-TB conundrum

A major issue with TB in Nigeria is the low TB case finding for both adults and children. In 2017 only 104, 904 TB cases were detected out of an estimated 407, 000 of all TB cases.

This indicates a treatment coverage of just 25.8 per cent thus leaving a gap of 302,096 cases, which were either undetected or detected but the cases were not notified especially in non DOT sites.

A total of just 1,783 MDR-TB cases were notified out of an estimated 5, 200, according to the health minister, Prof. Isaac Adewole.

Nigeria currently has 6,753 Direct Observation Treatment (DOT) centres compared to 3,931 in 2010. The total number of microscopy centres has risen from 1,148 in 2010 to 2,650 in 2017. GeneXpert machines installed in the country have increased from 32 in 2012 to 390 in 2017.

Treatment centres for patients with MDR-TB expanded from 10 in 2013, to 27 in 2017, while the number of TB reference laboratories also increased from nine in 2013 to 10 in 2018. Over 90 per cent of the TB patients notified in 2016 have documented HIV test results compared to 79 per cent in 2010, according to Adewole.

The health minister disclosed, that, in addition to this, a shorter drug regimen for the treatment of MDR-TB was introduced in the country in 2017 to reduce the treatment duration for patients with MDR-TB and ensure better treatment outcomes.

•An x-ray of a lung damaged by TB

-To further strengthen TB notification in some challenged states, TB Surveillance officers have been recruited in 12 states (Rivers, Delta, Imo, Anambra, Lagos, Oyo, Benue, Niger, Kaduna, Kano, Bauchi and Taraba) to work with non-NTP facilities (private Health facilities, atent medicine vendors, community pharmacists), disease surveillance and notification officers, state epidemiologists and TB programme officers, to improve TB case notification, he explained.

In a bid to bolster Nigeria’s anti-TB campaign, the Federal Ministry of Health has also initiated an active case-finding campaign in key affected populations spanning people living with HIV, children, urban slum dwellers, prisoners, migrants, internally displaced people and facility based health care workers.

The result has been encouraging so far, with the detection of over 11,500 TB cases through active house to house case searching in 2017.

However, the number of TB cases detected represent a small fraction of the over 300,000 missing cases of TB in the country; that is, those that go undetected.

Recently, Nigeria signed a $71 million agreement to support efforts to control TB in the country over the next two years (2019-2020) thus signalling the government’s intention to prioritise TB efforts.

In the wake of the development, national TB program officials and health care practitioners converged in Lagos, as part of a training focused on building health systems’ capacity to tackle TB and multi drug-resistant TB (MDR-TB) at the national and sub-national levels.

Prof. Isaac Adewole

These, among other efforts, are certainly meant for the long haul. On the short-run, the government and partnering agencies would do right to increase sensitisation efforts. It’s the only way prevent an experience like the Davids.

Sometimes, when he shut his eyes, David, 36, remembers his deceased daughter’s smile, and the pitter-patter of her feet.

In those moments, the world peels away and the bereaved father and TB patient, experiences fresh torment; heartbroken, he relives the screaming gleam in his daughter’s eyes just before the glimmer turned clay-like, the colour of burnt mud.

-I know she is in a better place. But I should have been more observant. My carelessness led to her death,” said David, in the tenor of a man for whom time and memory allows the gift of reflection. Until reality afflicts him with the plague of truth: Tanimola, his bubbly five-year-old daughter, lays dormant beneath cracked earth.

PHOTOS: William Daniels, Olatunji Ololade, Library



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