Rizayana, Caring for Love Against Tuberculosis

KOMPAS/ZULKARNAINI

Rizayana is a volunteer of the Tuberculosis and Leprosy Care Community in Teupin Raya village, Nurussalam district, East Aceh regency, Aceh.

As a health educator, Rizayana, 31, did not want to stay silent as many people suffered from tuberculosis. In 2010, she was among initiators of the establishment of the Tuberculosis and Leprosy Care Community in Teupin Raya village, Nurussalam district, East Aceh regency, Aceh.

It was funny to recollect how Rizayana first became a tuberculosis volunteer. She often visited people with tuberculosis symptoms and asked for phlegm. After successfully persuading them, she returned home carrying bottles filled with phlegm.

Don’t think it\'s easy to ask people to give their phlegm to get checked at the laboratory. It’s not uncommon that people refuse to be visited by Rizayana and some even grow angry. “They’re worried they would be embarrassed if they’re proven be have TB [tuberculosis],” said Rizayana, Sunday (4/21/2019).

Rizayana is a volunteer at the Tuberculosis and Leprosy Care Community (KPTK) in Teupin Raya village, Nurussalam district, East Aceh regency, Aceh province. Through the community, she campaigns about the hazards and how to control tuberculosis and helps patients recover. Rizayana was one of the initiators of the establishment of the Teupin Raya KPTK, which was formed in 2010.

When the community was formed, many people scorned, “Is there no other work besides collecting phlegm? Aren\'t you afraid of contracting tuberculosis?” However, her enthusiasm was not subdued. She thought, if nobody moved, people with tuberculosis in her village would not be helped.

With patience, Rizayana met with people that were suspected of having tuberculosis. Sometimes, only to get phlegm, a patient must be visited five times. The meeting must also take place in a closed place so that no one can see. Residents stay away from people whom Rizayana meets because they are considered to have an infectious disease. “I once collected phlegm [from a person with suspected tuberculosis] secretly at a plantation,” Rizayana said laughing.

At that time, residents considered tuberculosis a curse, which is shameful. If there are family members with tuberculosis, then it is hidden from the public. People stay away because they are afraid of contracting the illness. For the sufferers, instead of receiving treatment, they are often treated unfairly by their own families. They are not allowed to stay at home.

However, after seeing a large number of tuberculosis sufferers who recovered after being helped by volunteers, residents started to become more aware.

Tuberculosis is a contagious disease caused by mycobacterium tuberculosis, which attacks the respiratory organs and lungs. Without disciplined treatment, this disease can cause the death of the patient. Tuberculosis can spread through the air infected with the virus.

Health workers

Rizayana’s involvement in the tuberculosis care movement began with the training of village health workers. In 2008, Rizayana had just finished high school. She had wanted to be a midwife. Because of the economic condition of her family, she had to put her dream aside.

During the training at the village health center, she got a lot of knowledge about healthy lifestyles, various types of infectious diseases, and prevention methods. From there she learned tuberculosis was a deadly disease. She and other colleagues often give counseling to people on how to maintain a healthy lifestyle. A year has passed and there has been no activity for the health workers.

In 2009, she married and a year later gave birth to her first child. Being a housewife does not necessarily mean that she had to give up her voluntary spirit. Rizayana heard that Nurma, 37, a resident in her village, was seriously ill. From the conditions and symptoms, Rizayana suspected Nurma had tuberculosis.

Previously, Nurma had been taken to a doctor, even to a shaman, but had not recovered. Her family slaughtered white-feathered chickens as a ritual to release her from the curse. But the disease became increasingly violent. A pulmonary physician stated Nurma’s life would not have long to live. In a state of despair, Nurma was no longer seeking treatment, only lying withered on the bed.

Rizayana took Nurma’s phlegm to be examined at a laboratory. It turned out Nurma was positive with tuberculosis. Rizayana accompanied Nurma’s treatment until she recovered. In 2013, Nurma was declared fully recovered. “I am very happy. I work sincerely without pay,” said Rizayana.

In 2010, when accompanying Nurma as she sought treatment, she invited the village health workers to form a community for tuberculosis. The village worker initiative received support from a non-governmental organization (NGO) in Aceh, the Indonesia Sheep Foundation. The NGO facilitates the formation and training for strengthening institutions.

Since the community was established until now, Rizayana was appointed secretary. She also allows her house to be used as the KPTK secretariat. Each month the community members hold regular meetings to discuss tuberculosis mitigation efforts.

At present, there are 22 members in the community, all of them women, and scattered in four villages. The community has become a place for people to ask about infectious diseases. Health volunteers used to be scorned but now they are sought after. When people feel they have symptoms of tuberculosis, people collect their phlegm and give it to

volunteers to be checked at a community health center (Puskesmas). The volunteers have succeeded in changing the paradigm of citizens.

For nine years the Teupin Raya KPTK has assisted 42 tuberculosis sufferers, 39 of whom recovered, two died, while one person is still being treated.

The movement then received support from the village officials. In 2018, Rp 1.8 million in village funds was budgeted for activities to provide additional food for tuberculosis sufferers. “In 2019, hopefully there will be support so that we can do more activities,” Rizayana said.

The number of tuberculosis sufferers in Aceh is fluctuating. Based on data from the Aceh Provincial Health Agency, in 2015 there were 4,023 cases, then dropped to 3,410 cases in 2016, but in 2018 it rose to 8,471 cases. The total population of Aceh is 3.5 million.

Seeing the high incidence of tuberculosis in Aceh, the mitigation efforts involving citizens needs to be strengthened. The movement that Rizayana and her colleagues initiated was a concrete example of success in reducing the spread of tuberculosis.

Rizayana

Born: Teupin Pukat, East Aceh, April 22, 1989

Job: Housewife Husband: Juliadi

Children:

- 1. M Arfakasyaz

- 2. M Mubarrak Aljunda

Education: Senior High School

Activity: Secretary of Tuberculosis and Leprosy Care Community in Teupin Raya, East Aceh