“TB ke marizon se milne ya unke ghar jaane mein khatra hai kyunki isse aapko bhi TB ho sakta hai.”
“TB toh ek halki bimari hai jisme khansi aur bukhar hota hai. Ise kisi ilaaj ki zarurat nahi.”
“TB toh keval un purshon ko hota hai jo bidi ya cigarette peete hain.”
These and many such myths continue to revolve around Tuberculosis (TB) even today, along the rural belt in Udaipur and in neighboring districts of Southern Rajasthan. This area comprises of a high proportion of tribal population living in abject poverty due to lack of proper infrastructure, drought like conditions and unavailability of public facilities. This has resulted in limited land holdings, poorer education levels and a dearth of livelihood options which has contributed to large scale distress migration of residents to economically well-off cities like Ahmedabad and Surat where they work as migrant labor in mines or in marble polishing industry.
Tuberculosis is one of the rampant chronic illnesses in the areas where Basic HealthCare Services (BHS) works. The data of National Family Health Survey-4 highlights that Rajasthan has an incidence rate of 237 cases per 100,000 which is higher than the national rate of 211 per 100,000. Superstitious practices and stigmas are still prevalent which result in a high number of cases among all age groups. To battle TB and other such diseases, BHS has set up AMRIT clinics as an initiative to provide low cost, high quality primary health care to the remote, rural, and under-served population.
The treatment of TB requires strict and long adherence to drugs and proper nutrition intake. It is a lengthy process as opposed to treating other infectious diseases. The minimum time is 6 months and the maximum, depending on the severity of the patient, can go up to 2 years. Failure to take prescribed drugs can significantly increase the fatality rate of the disease, as the patient tends to become resistant to the drug, thereby increasing the mortality risk. Moreover, being a highly communicable air-borne disease, it can easily spread from one person to another. It also increases the susceptibility for infection among individuals who are poorly nourished.
Here, the patients suffering from TB are mostly migrant labor who work at mines or as marble polishers. As the nature of work includes excessive physical labor and brings them in contact with dust particles, there is a higher possibility of TB becoming more severe during the course of their work. Therefore, as a part of the treatment, TB patients, especially those who are migrant labors, are advised to leave their jobs until the treatment is complete, in order to avoid the exertion of travel from their hometown to the workplace in big cities. Keeping all these conditions in mind, AMRIT clinics not only provides medical treatment, but also assists them with regular counselling and follow-ups. It also provides nutritional and financial support to the patients with projects like AMRIT Aahar and Project A-kshya.
As a way of helping patients cope with the emotional stress of battling a disease, AMRIT clinic has conceptualized ‘Tuberculosis Day’- a platform for TB being treated at AMRIT clinics, to come together as a group and help each other fight the disease. On this day, patients sit with each other and talk about their emotional turmoil as well as associated fears. It helps all of them know that they are together in this battle against TB, and also that it is a curable disease. They are usually suggested to come along with their spouse or any of their family members, thus helping to increase the role of stakeholders in curing patients.
TB day is held in the first week of every month at AMRIT clinics, where a health worker conducts and facilitates the program, accompanied by a nurse and a nutritionist who educate people about the need for drugs and nutrition respectively. Inputs from these experts help patients to understand the disease from an expert perspective.
The TB day starts with the medical check up of the patients followed by tracking their progress in terms of weight and lung strength by performing exercises such as blowing air into balloons. They are then provided with their medicines and one-to-one counselling sessions by the nurses. Next, they gather in a group in the veranda of the clinic and introduce themselves to each other. The health worker encourages the patients to share their experiences of undergoing the treatment in last one month. It is during these sessions that we get to hear inspiring stories of progress from them.
“Kuch mahino pehle tak main clinic tak chalke nahi aa pata tha. Mujhe yahan tak aane k liye 3-4 baar rukna padta tha kyunki meri saans phul jaati thi lekin jabse maine dawai lena shuru kia hai, mujhe kaafi behtar lagta hai. Main yahan clinic pe bina ruke aa jata hu.”
“Pehle main ration ki dukan se gehu ki bori uthake nahi laa pata tha lekin pichle hafte main 30 kg gehu khud uthake laya. Mujhe abhi kaafi achha mehsus hota hai.”
Sharing these small milestones with everyone helps in building patient’s confidence, which along with euphoria and positivity, are clearly visible on their faces when the health workers appreciate their stories with a thundering applause and encouraging words. It’s a mesmerizing sight of happy faces radiating exuberance.
Following the session, the nurses and health workers discuss with patients, the importance of taking drugs and the consequences of not following it. The health workers also ask them about their staple diet. The nutritionist from the AMRIT clinic then addresses the group, talking about a balanced diet and the consumption of locally grown crops. He/she tells the patients about the nutritional value of crops grown in their area and encourages people to use them. For example, soya bean, which is a great source of protein, is grown in the area but only a few people consume it, as they are not aware of the benefits of the crop. By discussing about each locally available ingredient and highlighting their nutritional value helps the patients to be more aware of the food they are putting in their bodies. To add more value to this process, the nutritionist gives them the recipes, to replicate in their own place. Some of the recipes been taught include suji halwa, egg curry, daliya, khichdi with soyabean, and sattu ka halwa.
The other sessions which are carried out on TB day, include the topics of kitchen gardening and poultry farming, stressing on the important of eating fresh produce and its high nutritive value. The health workers also focus on family profiling where all the family members of a TB patient are screened and tested for any possible symptoms of the disease.
In case there is a child under 5 years of age in the family, a Mantoux test for screening the immunity of the child is carried out, followed by treating them with preventive drug against TB. There are plenty of other areas where the clinic provides support to the patients by linking them to services like AMRIT Aahar, TB loan and Skill training.
AMRIT Aahar is an initiative to cater to the dietary requirements of the TB patients, where they are provided with nutritional food supplies including oil, soya bean, moong, and besan twice a month so that they can use them to prepare food at home. They can make use of recipes to cook delicious and nutritious food. AMRIT Aahar, thus aids them further into a speedy recovery.
Since most patients are daily wage labors, and their income gets affected due to the illness, they either leave the treatment incomplete or borrow money from local moneylenders at a high interest rate, and hence, get exploited. To avoid such situations, TB loan (Project A-kshya) is an initiative by Shram Sarathi, a micro-credit organisation that has partnered with the AMRIT clinics to provide loans to TB patients for the period they are undergoing the treatment. Project A-kshya gives these loans at a lower rate and encourages patients to adhere to the treatment and to utilize the money to fulfill their dietary needs. Repayment of the loan starts once the patient has recovered from the disease and has started going to work.
To resolve the problem of finding a job once the patients are cured, and also to prevent them from working at places hazardous to their health, Aajeevika Bureau supports with Skill Training, Employability and Placement Academy (STEP academy), which helps build technical and life skill competence that enables young people to find suitable employment. It also avoids them being pushed back into unskilled and hazardous occupations like marble polishing and mining.
All in all, the TB day at AMRIT clinic enables a space for interactive engagement with the TB patients regarding care seeking, preventive measures, breaking myths, understanding nutrition, and creating a road-map to connect patients with other services for a better future.