Giving voice to the voiceless in Brazil
ACBG Brasil: Giving voice to the voiceless in Brazil through .ORG
If the human voice is the “organ of the soul,” as Henry Wadsworth Longfellow wrote, ACBG Brasil restores the souls of thousands of Brazilians every year and plans to do more. The organization gives voice to the voiceless, both figuratively and literally.
Brazil-based Associacao Cancer Boca e Garganta Brasil (The Mouth and Throat Cancer Association of Brazil – ACBG Brasil), is a non-profit, civil society organization that advocates for head and neck cancer patients and their families regardless of geographical, demographic and socioeconomic barriers
The organization faces a growing problem: Cancer is one of the main causes of death in Brazil, topping out at about 560,000 new cases annually, according to Global Cancer Observatory’s current data. The World Health Organization estimates the number of cancer cases in Brazil will rise by 50% by 2025, due mostly to population growth and an aging population. Many of these cases will be head and neck, caused often by smoking, alcohol abuse and human papillomavirus transmitted through oral sex.
“While there are still unheard voices, ACBG’s work is not over.”
Brazil faces a shortage of doctors, particularly oncologists, and poorer communities struggle to get the rehabilitative care they need after initial treatment. Those afflicted with head and neck cancers, particularly in rural and poorer areas, often fall through the cracks.
“Head and neck cancer patients suffer from prejudice,” said Maria Júlia Pereira, project manager with ACBG Brasil. “These patients don’t have rights or treatment. They suffer from lack of rehabilitation because they need a professional to specialize in this field to give them voice. This is our main goal – to give them back their voices and give them assistance.”
Patients need equipment to breathe, eat and talk, but the Brazilian government doesn’t provide this equipment and it’s generally too expensive for patients to purchase it themselves. Losing the ability to speak due to head and neck cancers often renders these patients hopeless and ostracized.
“Our mission is to support and mobilize society for the patients with head and neck cancer who can’t get treatment and rehabilitation because they no longer have a voice. Our main job is to give them a voice.” – Maria Júlia Pereira
Since 2015, ACBG Brasil has focused on:
- Advocacy: Working with political agents to reformulate and create public policies that guarantee the rights of patients. The organization runs a Head and Neck Cancer Working group that includes more than 40 medical professionals working toward a variety of critical goals, including a national health policy for head and neck cancer patients.
- Rehabilitation: Facilitating patient access to services that help them recover and return to a productive lifestyle. The organization raises funds to provide electronic larynxes to patients who cannot afford them.
- Inclusion: Providing dedicated efforts to bring patients who have suffered mutilations leading to social exclusion back into society. ACBG Brasil helps to create choirs across the county called Catarolar, which provide music therapy to patients and their families.
- Information: Production and dissemination of useful mouth and throat cancer knowledge to citizens, which is not widely spoken about. The organization runs a national head and neck cancer prevention campaign called The Green July.
To date, ACBG Brasil has been able to work with 56 medical institutions in every Brazilian state, including some of the most remote areas in the country. ACBG Brasil couldn’t have done it without being a .ORG.
“For our organization, it was very important to be recognized by .ORG, because our dream is to have an impact beyond our borders,” Pereira said. “It opens up the possibility for us to spread across Latin America and reach more patients and professionals.”
ACBG Brasil believes that it’s possible to improve the livelihoods of people living with mouth and throat cancer. To do this, the organization helps people leverage an expansive network to help fight for their rights to make their lives better. It uses .ORG to reach more people in remote areas and to expand our reach deeper into Latin America.
“Until this year, we were a team of only five people—but still managed to reach so many people and achieve a great number of goals,” Pereira said. “If you have a mission, a purpose, nothing should stop you from reaching it.”
Prevent, support and mobilize society so that people with head and neck cancer have the appropriate treatment and rehabilitation.