Patients relive ordeal as TB spreads, becomes untreatable
“I thought it was the end of the world for me when I was told I had tuberculosis (TB).”
These were the words of Rafiu Mojeed, 37, an indigene of Osun state who resides in Lagos.
Mojeed fell ill during the last quarter of 2018. He coughed continuously but never regarded it serious. He went to the pharmacy often to get drugs, but when the coughing got severe in November, he visited the health centre where he was tested and diagnosed with TB.
Mojeed, who is a father of two said: “I never thought I had TB. I was scared when I was told I had TB, I thought it was the end of the world for me, that the next thing was death due to the kind of information I had been hearing about TB.”
He said his family brought him to Damien Foundation at Gbagada General Hospital where he is presently undergoing treatment.
Unlike other people who face stigmatisation in the society and from their family, Mojeed has the full support of his family as they have cared for his treatment to ensure he gets well.
Ezike Kenneth, 47, who does his mining business in Kano, started experiencing weight loss, fatigue, cough and weakness. He had to treat cough thinking it was a mere ailment.
He said: “I was coughing and I started taking some cough syrups and antibiotics, but it was not getting any better, I did not really know it was TB, so a doctor friend of mine advised me to do a TB test. I went for X-ray and other tests and it was confirmed I had TB in December 2018.”
Kenneth said his doctor friend advised him to undergo the treatment, which would take up to six months, but he reluctantly obeyed him, thinking of how he would stay away from his mining business in the north.
“My doctor friend told me I needed to start treatment, which takes about six months and that the treatment was free here in Lagos. I said six months was too much because I am based in the north doing my mining business there, while my family is here in Lagos. I felt maybe if it was three months, I could still manage it since I often come to see my family here in Lagos every three months, but I said six straight month is too much and he said if I really want to be cured of this TB, I needed the six months of treatment.
He continued: “Honestly it gave me a whole lot of concern, but having treatment is better than whatever I might be doing and so I decided I would be around for the six months and after that go back to what I was doing in the north.”
Kenneth whose children were in the hostel and boarding school were safe from getting infected by their father, but his wife who stayed at home often, was not protected.
Kenneth had to leave his home for his wife, but took his wife to the hospital to check for her status, which was negative.
He had since then been on TB treatment in which he is responding positively with the support of his entire family.
Nigeria, on March 24 joined the world to marked the 2019 World TB Day (WTD), with the theme: “It is time to end TB.” The day is set aside as a great opportunity to raise more awareness among people on the need to end a curable illness.
TB remains the world’s deadliest infectious killer, claiming 18 Nigerian lives every hour and nearly 4,500 lives globally everyday. It is also afflicting close to 30,000 others, according to the World Health Organization (WHO).
The Lagos State Ministry of Health (LSMH) recently disclosed that over 80 per cent of TB cases in the state are yet to be diagnosed.
According to the ministry, surveys have shown that Nigeria has an average of about 10.4 million cases of tuberculosis, making her the country with the highest tuberculosis burden in Africa.
Although, the 2018 Global TB report revealed that Nigeria contributes about nine per cent to the global 4.3 million missing TB cases, coming behind only India and Indonesia with 26 per cent and 11 per cent respectively.
The report indicates that an estimated 418,000 new TB cases occurred in Nigeria in 2018 and the country notified 104,904 (25 per cent) and 106,533 cases of TB in 2017 and 2018 respectively, giving a gap of 314,712 and 319,599 cases yet to be notified respectively.
This implies that a large number of undetected/missing TB cases constitute a pool of reservoir for the continuous transmission of diseases in the community. These missing TB cases can be found among men, women and children with different forms including drug resistance TB and has the potential of infecting 10-15 million persons each year.
Such is the case of Joy Murtala, 25, whose five-month-old baby was infected with TB.
Murtala, after delivering her baby called her younger sister to come and stay with her so she could help nurse the baby, while Murtala goes out for her daily business.
Little did anyone know that Murtala’s sister had TB. She would cough while carrying the baby, which was easy for the baby to get infected.
Murtala said she noticed her baby’s constant coughing and high temperature, which prompted her to go to the health centre for check up on her baby.
She said: “During December 2018, my sister started coughing when I gave birth to this baby. I leave my baby for her to nurse while I go to the market to do my business. Soon after I discovered my baby was weak, coughing and running temperature. I took my baby to the hospital to found out what was wrong and I was told my baby had TB.”
Balogun Omoniyi, a 37-years-old, member of the National Union Road Transport Worker (NURTW), Oshodi branch, started feeling strange in September 2018.
“I was feeling tired, not able to walk for long, coughing, though I did not cough out blood,” Omoniyi told The Guardian.
Omoniyi narrated to The Guardian that he was infected through a close friend who had TB.
“He was my close friend and we spent all our time together. He never knew he had TB, but he told me he had gone to treat his constant cough,” he explained.
Little did Omoniyi know that his friend did not treat TB. “But I never knew he did not treat it properly, he only took drugs for the cough and not TB treatment. So that was how I got infected.”
He continued: “I came down to Damien Foundation as directed by people and I was tested and told I had TB. They counseled me that it was curable if I adhere to the treatment and drugs and I started treatment in February 209 and now I have gone back to work feeling better.”
According to the 2017 Global TB Report, about 47 Nigerians develop active TB, seven of which are children, every hour.
Further statistics by the WHO, reveals that about one-third of the world’s population has latent TB, which means people have been infected by TB bacteria but are not (yet) ill with the disease and cannot transmit the disease. People infected with TB bacteria have a 10 percent lifetime risk of falling ill with TB. However, persons with compromised immune systems, such as people living with Human Immuno-deficiency Virus (HIV), malnutrition or diabetes, or people who use tobacco, have a much higher risk of falling ill.
In 2017, about 1.7 million people including over 250,000 children globally died of TB-related causes, as over 95 per cent of TB deaths occur in low and middle-income countries especially in Africa.
Further reports estimated that 407,000 HIV negative people in Nigeria have TB each year, while 63,000 HIV positive people that get TB each year. An estimated 115,000 HIV negative people die from TB in Nigeria each year and an estimated 39,000 HIV positive people also die.
The 2018 WHO Global TB Report indicates that the disease burden caused by TB are falling globally, but not fast enough to reach the required milestones of the ‘End TB Strategy -2020.’
Since 2000, global efforts to combat this preventable and curable disease have saved an estimated 54 million lives and reduced the TB mortality rate by 42 per cent.
One of the major challenges of TB response in Nigeria is attributed to low TB case finding both in adult and children and emergence of untreatable versions of the disease. This is attributed partly to poor knowledge about TB that influences the health seeking behaviour of people, low TB treatment coverage and the negative attitude of patients in defaulting to their treatment.
Speaking to The Guardian, the Country Representative, Damien Foundation, Nigeria, Dr. Osman Eltayeb, said of every 100 TB sufferers, only 25 are detected and treated, noting that without treatment, 50 percent of persons affected die within two years.
He said in Nigeria, there is way huge number of missing TB cases because some of the patients go to traditional medicine stores or pharmacy to self-medicate, rather than reporting to the TB treatment centres.
“The missing cases do not show up in the clinics all they do is to go to the pharmacy to take medicine, patent medicine vendor and they keep spreading the disease in the community because they have not taken the proper treatment. Those are the missing cases. That is why we need to adopt aggressive case finding to detect all those patients that are missing cases,” he noted.
For mother to child TB transmission (congenital TB), Eltayeb said once the mother is on treatment, she is not likely to transfer the disease to her child.
“We call it congenital TB and it has been reported that newborn babies are having TB because their mothers are not on treatment.”
The medical advisor said the challenge for TB programme in Nigeria as a whole, is shortage of human resource, capacity building of the human resource, logistic aspect of the hard to reach area and also the low case finding, which are the missing cases.
He said Lagos State detected about 9,000 cases last year and “we are targeting 22,000 patients this year, so this is our target as the state TB programme, that by end of 2019 we can move from 9,000 cases to the target of 22, 000 patients.”
On the issue of funding TB treatment in Nigerian, he said Damien Foundation, a sub-recipients for Global Funds grant for TB, which has been in Nigeria since 1992, is in close partnership with the community and the government, to impact lives of several Persons Affected with Leprosy (PALs) through free reconstructive surgeries, free prostheses, mobile clinics, social reintegration and social supports to both PALs and their families.
Medical experts have warned that untreatable version of TB is spreading across Nigeria. The experts, as part of activities to mark the WTD, March 25, alerted to rise in cases of Multi-Drug Resistant Tuberculosis (MDRTB) in the country even as they called for immediate action to tackle the menace.
The WHO said MDR-TB remains a public health crisis and a health security threat and estimates that there were 558,000 new cases with resistance to rifampicin – the most effective first-line drug, of which – 82 per cent had MDR-TB.
Coordinator of Lagos University Teaching Hospital’s (LUTH) Directly Observed Treatment Short-Course (DOTS), Dr. Olukemi Longe-Peters, in an exclusive interview with The Guardian said: “A form of TB called Multi Drug Resistance TB (MDRTB) is unfortunately becoming more common. When I started with this programme ten years ago, it was only default cases, people who have been treated before and are not faithful to their medications are the only ones we are seeing MDR-TB but now we are seeing fresh cases that have MDR which means it is spreading.”
Longe-Peters said it is a problem because it is not easy to treat. “MDR-TB, by the time treatment starts; it takes a minimum of nine to 12 months, or even 24 months to get treated,” she said.
The public health physician further explained: “It takes eight different drugs, with side effects and very painful injections. The idea is to make sure the symptoms do not develop. If people could be detected in time and faithful to that first line medication most of them will be treated and be able to cope with the situation and not develop MDR-TB.”
The coordinator said that TB is endemic in Nigeria and everybody is at risk and nobody is exempted.
Longe-Peters continued: “TB is very contagious. If you are in a closed area that is not well ventilated, you can easily get it. Nobody should think they are exempted.
“It is a problem that has solution, there are highly effective drugs which the government made available to people free of charge, if only they will go to the right place which is the DOT clinic in any government hospital or healthcare centre.”
Also, the WHO has issued new guidance to improve treatment of MDR-TB. WHO is recommending shifting to fully oral regimens to treat people with MDR-TB. This new treatment course is more effective and is less likely to provoke adverse side effects. WHO recommends backing up treatment with active monitoring of drug safety and providing counselling support to help patients complete their course of treatment.
The recommendations are part of a larger package of actions designed to help countries increase the pace of progress to end TB and released in advance of WTD.
The Damien foundation, in over 25 years of operation in Nigeria has made achievement in pioneering Multi-Drug Resistance Tuberculosis (MDR-TB) treatment in the country. It initiated the MDR –TB treatment in collaboration with University College Hospital (UCH) Ibadan in June 2010 and recorded a high treatment success rate.
Currently, Damien Foundation Nigeria covers a population of over 56 million across nine States (Oyo, Osun, Lagos, Ogun, Ekiti, Kwara, Delta, Ondo, and Edo states) with technical and financial supports in case detection and management in Tuberculosis and Leprosy.
Longe-Peters said the prevalence of TB in Nigeria is between 120, 000 and 150, 000 cases across the country though there is contention about whether the model used for the estimate is accepted or not.
“Unfortunately our health information system is not so robust; we do not have excellent data on everything, though there is a lot of improvement. We can see data of 2016, 2017 and 2018. Things are coming up a bit,” she said.
Longe-Peters noted that TB is a communicable disease, caused by an organism called Mycobacterium tuberculosis and it is a disease that has been around for a very long time because, even some Egyptian mummies that have been subjected to analysis have been found to have traces of TB borne.
She continued: “Unfortunately, it is endemic in Nigeria but some parts of the world have been able to get it under control through vigorous control programme. Here in Nigeria, we have not been serious enough with our control programmes, we still have a long way to go before we say we have it under control but I am happy that there is now some awareness that is being created so people understand the things we need to do to prevent themselves from being infected.
“Many people now know the signs of TB and seek medical attention in a timely manner. The most common form of tuberculosis is the one of the lungs called the pulmonary TB and the commonest symptom is chronic cough of more than two to three weeks and the cough may or may not be attended by chest pain and sometimes the cough is productive not always though, you might cough out blood but not always and the other important symptoms are the weight lost, drenching night sweat, anemia and on and off low grade fever.”
The expert explained that TB can affect any organ of the body, the bone, skin, brain and the sexual organ.
She said diagnosis is made by subjecting the sputum to laboratory analysis, chest X-ray, skin test which we call the Mantoux test and there is a newer test called the QuantiFERON-TB Gold test (QFT-G).
“Regards to treatment we are fortunate that we have a drug which is Rifampicin and to make sure of its potency and not to become resistance, we do not give it alone. We give it with the other drugs, what we use as standard here is what is called four fixed drug combination (Rifampicin, Isoniazid, Pyrazinamide and Ethambutol Hydrochloride) and the number of drugs the patient takes depends on weight of the patients,” she added.
Reacting to the challenges patients’ encounter, Longe-Peters continued: “According to TB fact sheet, it says that our budget is 76 percent unfunded. The government has funded eight percent and Non Governmental Organisations (NGOs) and agencies have funded 16 percent. You can imagine if there is a programme for which you have a budget and 76 percent of that budget is not available what do you except of it.
“For an ideal TB programme there is an estimate of what it should cost to have an ideal TB programme where all different drugs which are desirable are there, the different investigation is there, the entire machine for the sophisticated diagnostic. Everything for ideal, there is a budget for it. That estimate of TB budget is what it would cost you to give your citizens a good TB care.”
She continued: “Those of us who are implementing are doing the best we can with the resources available to us but in a situation like that we cannot be performing optimally. The national programmes are doing their best, they are giving us a lot of support and they are trying with regards to distribution of medicine. At least stock out is not as worse as one time that in any given year you must have some months of stock out, it does not happen like that anymore they are trying. The first line drugs are readily available.”
The expert said they occasional experience issue with pediatrics drugs stressing that TB is the most opportunistic infection found in people who have HIV and we collaborate very closely with those in that unit to make sure we that we take very good care of them.
According to the coordinator, the government is making some good effort with the resources available. “I am saying for now that basic diagnostic tool are available and basic medicine are available most of the time which is a great improvement on what we used to have.”
Longe-Peters said they are detecting just a small fraction of the estimated cases, it cannot be said we are going anywhere as where as we should be.
“If patients are faithful to the medication, then most people will be cured within six months but if the person has the TB of the bone or the brain or have TB meningitis, those ones you treat for longer time may be up to 12 months but most of the patients will be cured if only they can be faithful to the medication and that is what DOT programme is all about.
“You ask the patient to come and take the medicine so that we see him and then we document. That is the only way we make sure they comply with the regime and more than 80 percent will be cured but because people are not complying to the regime because it is long and inconvenient. If you tell person to come every day and take medicine in your presence, they have to go about their business they will not want to comply,” she added.
Longe-Peters said that pediatrics drugs are not always available though TB is not that prevalent in kids adding that any person in this environment is vulnerable but the problem with children is when they stay around people with TB they are more likely to catch it because of their relatively undeveloped immune system.
The coordinator continued: “For instance, if there is a parent that has TB, children under six are practically vulnerable. TB is not only of the lungs but it is the most common form. It can affect any structure of the body, the eye, skin, bone, testis the abdomen any part of the body. We want people to understand this because otherwise we have a situation TB of other parts of the body will be misdiagnosed. We except people to understand that when you have a child with swollen abdomen and you are not finding any other cause, have that at the back of your mind that child has TB.”
She explained that the disease that can be cured if it is caught in a good time and if the people are faithful to the medication if people do not get treated many of them would die. “Two out of three of untreated TB case will die. Every untreated TB of the lungs will infect 15 people every year. It is very essential that people will get the level of health education in the environment to such an extent that anybody who is coughing will immediately get to the health facility to test. If you catch it on time, to treat the person will get cured and will not infect others because the drugs are very effective. Once you start taking the medication within two to three weeks, you will be sterile and no longer infective.”
Speaking on reasons why TB prevalence is still on the rise in Nigeria, Consultant Family Physician and Health System Specialist at Gbagada General Hospital, Abideen Gbolahan said most patients, default in their treatment, which is one of the contributing factors that lead to multi drug resistance TB.
“This is one of the factors that leads to multi drug resistance TB, which is defaulting of treatment, because if you take the treatment and you stop, the bacteria might come aggressively and after that they develop resistance to TB. That is why the counseling is very important to educate the patients that they should continue the treatment.
Gbolahan, who is also the TB/HIV Programme Coordinator, noted that another challenge facing the elimination of TB in Nigeria is under-diagnosis of TB.
He said on the part of TB patients, the issue of logistics, which has to do with poverty, misconceptions of the disease conditions, as some label it as spiritual affliction, and then prefer going to church, and then stop treatment for whatever reason.
He advised that there should be more aggressive form of surveillance, as anybody who coughs for two months consistently should be sent for screening to be able to detect the disease early.
Explaining the level of treatment, the Senior Matron at Gbagada General Hospital, who also works with the Damien Foundation, Olatunji G.T said once the patients come in and are tested positive, they begin treatment immediately as the drugs are supplied for free.
Each patient’s drug, according to her, is kept in a pack, which contains the number of dosage for the six months of treatment until the person gets well.
“The tablets are here, we give them the drugs according to the weight of the patient, some their weight could allow three to four tablets, and some could be five tablets a day.
When they come in here, we counsel them and tell them what they need to know about the disease; how it could be contacted, prevention from spreading it to people around them, contact tracing, and let them bring their family members for check up.
“We also encourage and tell them how to take the drugs until the six months of treatment has elapsed. They combine it with good diet high in protein and vitamins to help the drugs work well.”
On the drug dosage, Olatunji said: “ The first drug is the intensive phase and the other is the continuous phase. The intensive phase drug is used for the first two months, while the continuous phase is used for the rest of the treatment.
These cartons of drugs consist of the whole drug usage of the patient, so we have their names written on it.
She continued: “We give them the drugs weekly and monitor how they take the drugs. We deal with their address, where they live. We want them to be able to access the treatment easily.”
She advised that TB is contagious as people should stop the habit of spitting recklessly on the road to avoid the spread of the disease, as the bacteria becomes active when hit by the sun.
WHO Director-General, Dr. Tedros Adhanom Ghebreyesus, said: “We’re highlighting the urgent need to translate commitments made at the 2018 UN High Level Meeting on TB into actions that ensure everyone who needs TB care can get it.
“TB is the world’s top infectious disease killer, claiming 4,500 lives each day. The heaviest burden is carried by communities facing socio-economic challenges, those working and living in high-risk settings, the poorest and marginalized.”
The WHO package is designed to help countries close gaps in care ensuring no one is left behind. Key elements include:
*An accountability framework to coordinate actions across sectors and to monitor and review progress
*A dashboard to help countries know more about their own epidemics through real-time monitoring – by moving to electronic TB surveillance systems
*A guide for effective prioritization of planning and implementation of impactful TB interventions based on analyses of patient pathways in accessing care
*New WHO guidelines on infection control and preventive treatment for latent TB infection
*A civil society task force to ensure effective and meaningful civil society engagement