MSF has stepped up the implementation of patient-centred drug-resistant tuberculosis (DR-TB) treatment programme in Armenia in order to try to combat the alarming rising rates of the disease in the country.
DR-TB can develop when a patient prematurely stops or interrupts their regular TB treatment. Like regular TB, DR-TB is also contagious and can spread in the population via air-borne droplets of saliva released when an infected person coughs.
Treatment barriers
One of the key challenges in the fight against DR-TB is the long and arduous treatment period, which can involve between 15-20 tablets each day, as well as injectables. Regular TB treatment involves between six and nine months of medication while drug-resistant forms of TB require up to two years of treatment, which is expensive and not always easily available or accessible.
Another key barrier to treatment can be the long distances to the TB clinics or cabinets where patients must go everyday to receive the grueling drug regime under supervision by trained medical staff.
In Armenia, where the harsh winter weather can wreak havoc on the country’s road and transportation system, low-income patients often struggle to reach these health structures for treatment.
Many patients also suffer from extremely harsh side effects after taking the drugs, which can include dizziness, deafness and mental health issues, which makes the journey home next to impossible for some.
“I had hardly started the treatment when I began feeling terribly bad,” said DR-TB patient Mariam Davtyan*. “After taking the drugs I was vomiting, losing my appetite, couldn’t see or hear properly, had strange noises in my ears, felt a heaviness on my back, my heart was beating slowly and it was difficult for me to breathe. After taking the drugs for two weeks and feeling like I was passing through hell, I began to think I would lose my mind or would die.”
Convincing patients to continue this struggle every day for up to two years is one of MSF’s key ongoing objectives, particularly when patients begin to feel better after the initial stages of the treatment.
Failing to complete the full course of DR-TB treatment can result in a patient becoming contagious again and lead to the development of even stronger drug-resistant forms of the disease, some of which there is no cure for.
Patient-centred approach
At the heart of MSF’s programme is providing a complete package of care for DR-TB patients, including medical, social and psychological support. Once on treatment, MSF tries to help patients cope with the side effects by providing face-to-face individual medical monitoring and treatment, individual or group counseling, home visits and food assistance to help patients adhere to the drug regimen.
Comprehensive follow-up of patients is key to ensuring good treatment adherence rates, as is patient education and bringing the care as close to the patients as possible.
In addition to supporting the National TB Programme (NTP) to increase the number of properly equipped TB health structures so that patients can more easily access their treatment, MSF provides transportation costs and social support packages for some eligible patients.
MSF also developed a comprehensive Home-Based Care Plus (HBC+) programme that employs an individually tailored approach to DR-TB treatment, taking into account the particular needs and circumstances of each patient that is unable to make it to the NTP TB health structures.
Patients with substance-abuse problems, disabilities, mental health issues, medical complications, registration problems or suffering from particularly disabling side effects are eligible for this special support to ensure their treatment is not interrupted. By the end of 2011, the total number of DR-TB patients who had or are still receiving MSF care and supervision in Armenia reached 779.
Special needs
Under the HBC+ programme, patients are visited every day in their homes for supervised treatment by an MSF HBC+ nurse.
“Everyday our HBC+ nurses provide information to our patients while providing treatment and keeping an eye on their physical and mental well-being,” explained MSF nurse supervisor Hasmik Miakalyan. “It’s an ongoing process that takes time but if they know about the disease and understand the effects of the drugs and why the treatment is so long and painful at times, they are definitely more adherent and stand a much better chance of being healed of DR-TB.”
Children are also often eligible for inclusion in the HBC+ programme, due to the special needs related to pediatric cases.
Armen** was the first child to be treated by MSF in Armenia in January 2011 and then followed by the HBC+ programme.
“In his mother’s family at least two people from the previous generation have already died from TB,” explained Hasmik. “Now his mother, his father and uncle are all on treatment – DR-TB became like a family disease for them.”
The family house is located in a small village far from the closest TB clinic and has no public transport. The parents are poor and it would be very difficult to take a child so far every day, especially in winter. To make matters worse, Armen’s mother is currently in hospital undergoing TB-related surgery.
“People from MSF were the first ones to come to us and explain about the disease, about the treatment, about everything,” said Armen’s aunt, who is currently looking after both her own as well as her sister’s children.
The family initially expressed serious concerns about beginning the drug regime because Armen was so young – just 11 months old at the time.
“Before that, we had seen something on the TV which did not give us too much information but with MSF visits we learned and understood about what we needed to do,” Armen’s aunt explained. “At least this disease is curable, there are some other diseases where your child is sick and you cannot help. After he started treatment he gained weight and now is a lot more active than before.”
However, the daily home-based sessions with the nurses proved to be a real challenge as Armen struggled against the injections necessary during the first phase and had to be restrained by his parents.
Adding to the distressing experience was the unpleasant taste and consistency of the numerous crushed tablets he was forced to swallow.
“For us, it was very difficult to start treating children because pediatric DR-TB drugs are not available on the market,” said Hasmik. “We want to give exact dosages to children but we don’t have pediatric doses - it’s all for adults at the moment.”
MSF had to teach medical staff how to divide and prepare the pills and remove the tablet casings, as well as develop ways to make it easier for children to take the drugs such as mixing the crushed tablets with jam or yoghurt to make them more palatable.
“There’s a lot of difficulties each day to provide this kind of treatment,” said Hasmik. “It would be much, much easier if there were more appropriate DR-TB drugs for children, like combined drugs, or syrups at least that you could measure exactly that were easier for children to swallow.
“Luckily with this case, everything is going well: he is growing well, his appetite is good, he is starting to walk and is talking - he’s ok,” she added.
Hopefully, Armen will be the first to break TB’s multi-generational grip on the family.
“With DR-TB, we have a chance to cure it so it’s our responsibility as parents to make sure our children follow the treatment properly till the end, otherwise nobody can be protected from this disease,” Armen’s aunt said. *
Mariam is currently participating in MSF’s TB&ME blogging project. You can follow her and other patients as they go through DR-TB treatment here: https://msf.ca/blogs/tb/author/mariam/
** Not his real name