19 July 2022 · Global Partnership for Zero Leprosy
Q&A: Meet Faustino Pinto, GPZL Leadership Team Member
What is your personal experience of Hansen’s disease?
At nine years old, I had whitish spots on my skin. My family thought it was a common problem, Pityriasis Versicolor, known in Brazil as “Pano Branco.” I started to lose appetite and weight, and I was hospitalized. My parents started a journey to search for a diagnosis.
During this period, I received several misdiagnoses. At 14 years old, I dropped things frequently and experienced congestion, nerve pain, constant cramps, and tingling in the skin. I was diagnosed with Rheumatic Fever. By age 15, I couldn’t breathe normally. An otolaryngologist prescribed medication and nasal saline. By age 16, nodules and lumps began to appear on my feet and hands and in my mouth. A general practitioner wrongly diagnosed me with syphilis. The doctor extracted the nodules that I had in my mouth with a scalpel. When I reported that I was still in the same situation post-surgery, he replied, “You had syphilis and it is cured.” He slammed the door in my face. Sometime later I received a third diagnosis: cancer.
At that time cancer treatment was available in São Paulo. I told my father, “I’m not going, I’d rather die here.” My father insisted we go. By age 18, I was a classic patient with Hansen’s disease: nodules, lumps, swelling in the feet and hands, the collapse of the nasal pyramid, deviated septum, and lack of strength in the hands. Yet I received another misdiagnosis: alcoholism. And I didn’t even drink alcohol.
Over the years we traveled to the capital many times and visited clinics in Barbalha, Crato, Brejo Santo, and Juazeiro do Norte. Ironically, I would finally receive an accurate diagnosis only five blocks from my house.
In 1989, the Ministry of Health broadcasted a TV commercial about Hansen’s disease that showed a woman cooking. Her son alerted her, “Mother, your arm is burning.” My doctor saw this commercial, and after four long years of anguish he told me, “I think you have Hansen’s disease.” He referred me to the Referral Center for Infectious and Dermatological Diseases, and in May of 1989, I received the definitive diagnosis.
How did you begin working with MORHAN, the Movement for the Reintegration of Persons Affected by Hansen’s Disease? How has your role with the organization changed over the years?
I was invited to participate in a case study supervised by the Ministry of Health. I talked about the way patients were treated. A nurse named Marlene Barroso was in attendance and was a member of MORHAN. She encouraged me to join and invited me to spend a week in the city of Maracanaú to get to know members of the organization at a Hansen’s disease colony. It was enlightening to hear the stories of people who lived there. I returned to Juazeiro excited, with the desire to make significant changes in people’s lives. I held meetings with people undergoing treatment and others who had completed treatment. We created the center of MORHAN in Juazeiro do Norte. Claudia Abreu invested a lot in my learning and LEPRA UK has played a very important role in my growth as a social activist. Through training and participating in projects, I have gained visibility within the movement and continue to contribute to the fight for human rights on a much larger scale.
You have worked as a nursing assistant, health educator, and social activist. How does stigma reduction work fit into your many roles?
At the health center where I was treated, I observed prejudice, discrimination, and a lack of empathy from health professionals. I started reading more about Hansen’s disease and denounced the abuses I witnessed. During this period I was threatened, harassed, and made the victim of a campaign against me throughout the municipality. Many providers don’t want to hear the truth about the type of service they provide or how they dehumanize patients. I wanted to change this reality.
For ten years I worked on the premises of the health center, with the technical and financial support of The Hansen’s Disease Relief Association. I took a Nursing Assistant course, and I decided to make the dressings for Hansen’s disease patients because some providers refused to do it. I started to buy dressing materials with the project resources. I wanted to create change from inside the health system. This empowered patients, and more people began to fight for their rights and demand respect.
I then decided it was time to reach higher. I left the assistance work to advocate for human rights, early diagnosis, decentralization of services, rehabilitation, and better treatment in Brazil and in the world. My activism brought me to England, Scotland, Japan, China, and Italy, where I was welcomed by Pope Francis. I gave a speech in the Vatican auditorium, something I will never forget. I have also been invited to speak in India, the Philippines, and the United States. I became the first Brazilian affected by Hansen’s disease to be heard at the United Nations. In 2020 I was invited by the WHO to speak about Hansen’s disease stigma in a public consultation to inform the Global Hansen’s Disease Strategy 2021 – 2030. I have been trying to do my part for over twenty years, whether bringing comfort to people affected, promoting training events and educational workshops, or building relationships with donors who support our work.
Many barriers are still imposed on persons affected. The disease triggers depression, anxiety, low self-esteem, and social problems, and few have the opportunities to face the system and bring about significant change. Hansen’s disease is not a neglected disease; it is the people who are neglected. We need more professionals who are committed to this work to build a world free of Hansen’s disease, with dignity and respect.
Within the Hansen’s disease community, there is an emphasis on the role of affected people as disease experts. From your perspective, what does it mean to be an expert?
People affected by Hansen’s disease are experts in pain, prejudice, discrimination, and stigma. Inclusion is only possible if we actively participate in all discussions about Hansen’s disease. That’s why we fight so hard to be included—so that there are no discussions about us, without us.
What do you hope to see the Global Partnership for Zero Leprosy accomplish in the short and long term?
The best allies in the fight for the elimination of Hansen’s disease are the people affected by it. I would like to see GPZL invest in initiatives created by persons affected because they can significantly change the environment in which they live.
We should work long-term to support people with lifelong effects of Hansen’s disease, which they experience due to late diagnoses or delayed treatments. When we think long-term, we must work to improve the quality of life for people affected by Hansen’s disease.