Community Warriors in the fight against TB
In the early days of 2020, the whole world seemed to be chaotic by the COVID-19 pandemic. But from here, stories about human love and community power become sparkling.

Meanwhile, tuberculosis (TB), a prominent “invisible killer” among the world's most dangerous infectious diseases, continues to claim the lives of thousands of people every day. On World Tuberculosis Day, March 24, we had a conversation with members of the Vietnam Community Network for Tuberculosis Control (VCTB), whom we call community warriors in the fight against TB.

THE STORIES OF INSIDERS

Just like I did in the past, many people believe that TB is someone else's disease, not theirs.
In 2009, during a health check-up at the Rehabilitation Center, Mr. Chu Thai Son (Hai Duong) discovered he had tuberculosis. He never imagined TB would strike him. At that time, without knowledge about TB, he did not realize where he caught TB and had no idea how to prevent it from spreading to his roommates. After eight months of treatment, he lost weight and was just over thirty kilograms. He always felt tired and suffered fevers often. He was referred to a provincial hospital and diagnosed with TB and pleural effusion. After continuing treatment for another six months, he was relieved to have the negative results in his hand. From then on, TB is no longer something distant in his life.
The story of Ms. Pham Thi Hien (Bac Ninh) started when she brought her child to the National Children’s Hospital. The doctor informed her that there was a case of tuberculosis in the room and advised her to take her child home rather than receive inpatient treatment. When she realized her child was too sick but couldn't be hospitalized, she carried him home with a question mark in her mind: “What is tuberculosis and why is it so scary?”.

IF YOU WANT TO GO FAR, GO TOGETHER

With years working to support vulnerable communities, Son and Hien have witnessed many people pass away due to TB. These losses compelled them to seek answers to questions. And the time had arrived...
At the 2014 Vietnam Civil Society Partnership Platform on AIDS, in a plenary session coordinated by Dr. Khuat Thi Hai Oanh – Director of the Centre for Supporting Community Development Initiatives (SCDI), the idea of establishing a community network to fight TB received a lot of support from participants. The following morning, at 6 a.m., over 40 like-minded persons gathered at the hall to celebrate the establishment of the Vietnam Community Network for Tuberculosis Control (VCTB).
This was the first cross-sectional network, with the mission of mobilizing the community to participate in prevention work and towards completely ending TB. The executive board consisted of five members who were representatives of TB patients and key populations affected by TB.
The Vietnam Vulnerable Communities Support Platform (was formerly the Vietnam Civil Society Partnership Platform on AIDS) – VCSPA was founded in 2007 by the Institute for Social Development Studies (ISDS) and the Bright Future Network (BFN+), and is currently administratively supported by the Centre for Supporting Community Development Initiatives (SCDI). The platform currently has more than 500 member groups/organizations, including non-governmental organizations, community organizations, networks and self-help groups of sex workers, people living with HIV (PLWH), people who use drugs (PUD), HIV negative partners of PUD&PLWH, MSM, transgender people, community groups participating in TB prevention and control, and religious and volunteer groups in all parts of the country.
 
In the beginning, when it was founded, few organizations and departments were aware of VCTB. Son and his colleagues knocked on numerous doors, seeking financial and professional assistance. Some rejections disappointed them, but there were also opportunities that presented themselves...
Before, I would never have dared to speak in front of a large crowd. I was always nervous whenever I had to say something. But now I can stand in front of hundreds of people, speaking about something I’m passionate about.”
I used to think they (donors/policy makers) were distant and had high positions. I used to believe that because I was so small, I couldn’t do those things...
“Hard work paid off.” Persistently, VCTB has steadily connected more than 100 individuals and organizations in more than 30 provinces and cities across the country, becoming a member of the National Program against Tuberculosis and an important partner of many international organizations.

THE FIGHT IS ARDUOUS...

Tuberculosis prevention and control in Vietnam has gained more attention in recent years, with impressive outcomes. The public health system for TB and lung disease prevention and control has been effective; there has been a high cure rate (92% for first-time patients); and community transmission of primary drug-resistant TB has been gradually being controlled.
However, the World Health Organization (WHO) reported that Vietnam remained one of the 30 nations with the highest burden of TB and multidrug-resistant TB in the world. Each year, Vietnam is estimated to have 174,000 TB patients, with 13,000 people dying from the disease. If left untreated, each individual with TB infects an average of 10-15 more persons each year.
Due to people’s limited understanding of TB and how to prevent it in some areas, the effort to find the source of infection has faced many obstacles in recent years. People living with HIV, people who use drugs, and residents of poor neighborhoods are at high risk of TB and drug-resistant TB, but they find it difficult to access and use diagnostic and treatment services, putting them at risk of losing track and dropping out of treatment. Furthermore, STIGMA is a major challenge to TB prevention.
Sharing about the issue of discrimination, Son emphasized the unpredictable consequences of patients hiding their disease. The patient’s body and lungs suffer substantial damage as a result of the extended illness, which will require a long time to treat. Furthermore, the untreated phase is when a person with TB might spread the disease to the surrounding community. Because of this, he and the members of VCTB always hope to establish a special clinic as well as mobile testing programs so that more people in the community may get friendly TB preventive services and treatment.

BUT YOU ARE NOT ALONE

“I recall an expert saying during the presentation, “Tuberculosis is a disease of poverty”...”
Son described a case of a female sex worker who had TB. Despite being warned about the risks of affecting her health and spreading TB to the community, she refused to seek treatment. “I would die of disease or have my child and myself starve...”. As a single mother, prostitution was the only way she could support herself and her child at the time.
Although the National Program against Tuberculosis has provided free TB treatment medications, additional treatment expenditures continue to be a burden for many poor individuals.
Son smiled as he mentions the Patients Support Foundation to End Tuberculosis (PASTB), a social, non-profit fund established by the National Program against Tuberculosis to assist underprivileged TB patients for all people to be discovered and treated.
Fortunately, thanks to PASTB, many people in difficult situations have been helped and cured.
People are also more confident and no longer feel isolated.

COMMUNITY CREATES CHANGE

During a business trip to Ben Tre, Son kept sharing opinions focusing on the role of the community.
The director inquired, unsure who he was. “This is our Doctor Specialist Level II,” a woman in the group joked. The entire group burst out laughing.
Son revealed that he used to believe he was a failure and at the bottom of life. He never imagined becoming a community worker to transfer information to the community. But today, he can step up and confidently present the community’s voice to advocacy policy seminars.
Over the years of hard work supporting TB patients, Hien has always valued collaboration with the health sector, particularly the provincial TB hospital or the local TB department. She hopes to be able to invite patients who have had TB and have been cured to share their experiences with others in the community. 
“They are insiders, and they are the best inspirers.”
"I dream that no one in the community dies because of TB. Those infected with TB are supported and treated. I also hope that people will have a better understanding of TB.”
"Since the outbreak of the COVID-19 pandemic, I notice more individuals wearing masks, spraying hand sanitizer, and loving themselves. I hope such actions will also be taken when it comes to the fight against TB.”

The stories of Son, Hien, and VCTB, in this arduous fight against tuberculosis, fill us with pride and confidence:

The community can absolutely make a change!

Thank you, Mr. Chu Thai Son and Ms. Pham Thi Hien, for sharing your story!

Article by Trang Tạ
Copyrights | Centre for Supporting Community Development Initiatives - SCDI Vietnam