As TB cases in Armenia rise at an alarming pace, MSF is stepping up "patient-centered" treatment of the deadly disease.
Armenia 2012 © Eddy McCall/MSF
MSF has stepped up the implementation of its patient-centered drug-resistant tuberculosis (DR-TB) treatment program in Armenia in order 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.
One of the key challenges in the fight against DR-TB is the long and arduous treatment period, which can involve between 15 to 20 tablets each day, as well as injectables. It can also last up to two years—as opposed to six to nine months for regular TB—and is both expensive and not always easily available or accessible.
Another key barrier to treatment can be the long distances patients must travel to reach TB clinics where trained staff can supervise their care. 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—including 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 can lead to the development of even more virulently drug-resistant forms of the disease, some of which cannot be cured.
MSF’s patient-centered program aims to provide a complete package of care for DR-TB patients, including medical, social, and psychological support. Once a patient starts treatment, MSF tries to help them cope with the side effects by providing face-to-face individual medical monitoring and treatment, individual or group counseling, home visits, and food assistance—all of which are designed to help patients adhere to the drug regimen. A comprehensive follow up program helps as well, as does patient education and access to care, which can be improved by bringing the care as close to the patients as possible.
In addition to supporting the National TB Program (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+) program that employs an individually tailored approach to DR-TB treatment, taking into account the particular needs and circumstances of each patient who 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 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.
Under the HBC+ program, an MSF nurse visits patients every day in their homes for supervised treatment.
“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+ program, due to the special needs related to pediatric cases.
In January 2011, Armen (not his real name) became the first child in Armenia to be treated by MSF and then followed by the HBC+ program. “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.”
TB and Children
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 yogurt to make them more palatable.
“There are 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 and that were easier for children to swallow.
“Luckily with this case, everything is going well," she added. "He is growing well, his appetite is good, he is starting to walk and is talking. He’s okay."
Hopefully, Armen will be the first to break TB’s multi-generational grip on the family, his aunt said. “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."