Month 2 – Chicago to Peru: When Innovation Meets Partnership
A thick white fog spreads over this harbor town. Barely visible are the one-story houses clustered next to each other in close quarters. Many houses are partially roofed and defenseless against the fog and humidity that occupies this region for nine months of the year. Through the middle runs a bumpy road that connects the lower part of this town with the upper and more inaccessible hilly region.
Home to over 200,000 people, Ventanilla, the largest district in Callao, remains relatively isolated from the rest of Peru. Ignored for years, the community is just beginning to receive street lights and police security. For many, it still remains a place of hardship and visible poverty.
It is here that a silent battle against tuberculosis (TB) is now beginning to come to the forefront.
Callao has long been considered a high-risk zone for TB and Ventanilla is soon in danger of joining it. Up to 50% of new cases are multi-drug resistant (MDR-TB), matching the overall rate for Callao. The statistics, despite the underreporting, are dire. The incidence rate of MDR-TB is eight times that of the national level.
However, government officials and other nonprofits are beginning to take notice due to the efforts of a relentless supporter of the people of Ventanilla. Founded in 2007 by a small group of individuals affected by TB, the Asociación de Personas Afectadas por Tuberculosis del Perú (ASPAT-Peru) works to educate those affected by TB on their rights as a patient and provide health care services. Headquartered in Callao, ASPAT-Peru has served over 100 patients and their families, making a huge difference in the lives of people who live too far from Lima.
Realizing the impact of TB on the families of patients, ASPAT is recognized and respected in the community for its innovative and holistic definition of People Affected by Tuberculosis (PATs) to include family, friends, and community members. Because it works so closely with the patients and their families, ASPAT is considered by many government officials and doctors to be a representative of the patients.
In 2009, ASPAT partnered with the GlobeMed chapter at University of Chicago. At that time, neither side anticipated the successful partnership that would ensue. In the past three years, GlobeMed at University of Chicago has collaborated with ASPAT to finance the provision of nutritional baskets to TB patients and education outreach programs in the community.
Last summer, chapter members Lauren Springett, Briana Flanagan, and Cindy Sui (now Co-President of the chapter) traveled to ASPAT as part of a GROW internship. It allowed them to witness firsthand the devastating impact of TB on many of Callao’s residents.
Here, the head nurse of the TB unit of the center informed us about an MDR-TB patient, Marcos, who had abandoned his treatment regimen… Melecio [president of ASPAT] acquired his address, and on a bumpy ATV ride we made the short trek out to the patient’s house. [Marcos and his wife, Ana] lived in a small, poorly lit house with only two indoor rooms and one bed. While Marcos and Ana shared a room, their two sons of 4 and 2 1/2 years old slept on small chairs outside of the bedroom. After observing their sleeping conditions, Melecio emphasized the problem it caused with the prevention of the spread of TB to other family members of the household. Sleeping in a small, shared, poorly-ventilated room offered no separation for the TB infected person of the household, so receiving a modular housing unit for Marcos was of utter importance. However, the catch was that Marcos had to return to a regular treatment schedule in order to receive the housing unit, as well as a nutritional food basket, and protect his family. Marcos had abandoned his treatment due to adverse side effects from the pills and because of his job. Without being home regularly, it became difficult to attend the health center for treatment. – Briana Flanagan, originally posted on their GROW internship blog
When it comes to the impact of the TB regimen on job prospects, there is no one who understands it better than Melecio Mayta Ccota, founder and president of ASPAT. Born in Puno, Peru, Melecio completed his primary and secondary schools with the dreams of becoming a pilot. However, shortly after his high school graduation, he was diagnosed with TB. Later, his condition worsened until he underwent a surgery that saved his life but ended his dreams of being a pilot. Melecio then dedicated his life to helping others suffering from TB. Thus, ASPAT was born and since then the dreams of many others have been realized.
It started off in a small room with a single computer. Despite its humble beginnings, ASPAT, like GlobeMed, was driven by a small group of committed volunteers who questioned the status quo and called for the rights of patients in Callao to reliable health care. Today, ASPAT has 30 employees. It provides a holistic approach to fighting TB with programs ranging from assisting with job placements, raising public awareness of TB and the surrounding stigma, lobbying for improved TB-related legislation, and providing pre- and post-surgical support, food baskets, and educational activities.
Government officials, business executives, and ordinary citizens have the responsibility to protect their communities from diseases by improving conditions of finances, infrastructure, and health care services – not out of charity or welfare but out of a vested self-interest. The chance of transmission to families and neighbors multiplies every time a person gets TB. At the heart of ASPAT’s model is a belief in the interconnectedness of the people in Peru – that the well-being of the society and the well-being of the patient are inextricably linked. As a result, Melecio and ASPAT strive to convey that a solution to TB in Callao can be found only when society realizes its responsibility towards TB patients and the patients realize their responsibility to society.
In this way, this interconnectedness between the well-being of a patient and society redistributes the responsibility of treatment and prevention to lie within all spheres of society rather than singularly with the patient. What follows is naturally a model of partnership and collaboration that acts on the self-interests and responsibilities of different sectors in protecting the rights of patients. Even more, this model becomes the only way to bring effective and sustainable change.
As a result, it comes as no surprise then that the success of ASPAT can partly be attributed to its strong collaborations with community members, government officials, religious leaders, and other nonprofits in the area. ASPAT currently works with ADRA, the Adventist Development and Relief Agency, the social arm of the Seventh-Day Adventist Church with branches in over 120 countries. This partnership has brought innovation to the fight against TB in Callao as both organizations have collaborated to establish health centers for MDR-TB and HIV treatment and a monitoring system to prevent discontinuation of medication.
Furthermore, in November 2011, ASPAT organized a Latin American forum on TB that brought together government officials, non-profits and health care providers in the area.
The partnership with ASPAT has also allowed GlobeMed at University of Chicago to create an innovative social entrepreneurship project for the upcoming year. During their GROW internship, Cindy, Briana, and Lauren quickly realized by talking to the patients and staff at ASPAT that the underlying cause of TB and the biggest barrier to well-being was poverty. A long and honest discussion with Melecio led to a new idea. Why not teach the patients business skills?
“Briana, Melecio, and I decided that projects such as modular homes and food baskets were really only temporary measures: they alleviated some of the patient’s poverty, but obviously only for a short period of time (for example, food baskets are only provided for the first six months of treatment). After a long brainstorming session on the underlying causes of TB, Melecio proposed that our project focus on educating patients and teaching them business skills.” – Lauren Springett, GlobeMed at University of Chicago
“We feel incredibly lucky that we’re able to connect with someone across the world who shares our values, and to express that connection by helping him overcome his challenges as well as sharing his joys. It inspires us to match his courage, resourcefulness and sense of hope for the future.”- Ethel Yang and Cindy Sui, Co-Presidents at University of Chicago
For the upcoming year, GlobeMed at University of Chicago and ASPAT-Peru plan to provide TB patients in Callao with training in business management and subsequent seed funding to start their own microbusinesses. GlobeMed at University of Chicago is collaborating with another organization on their campus, the University of Chicago Microfinance Initiative, to conduct market research. After the start-up, ASPAT will continue to provide trainees with evaluation and support. This project will provide recovering patients with a sustainable opportunity to rise out of poverty, better their lifestyles, and improve their health.
Margaret Meade once famously warned us of the power of a small group of thoughtful, committed individuals in enacting change. Today, ASPAT and GlobeMed at University of Chicago stand as prime examples of this power of individuals to affect change through constant innovation and strong partnerships. This power and a strong belief in the right to health care for all has brought together individuals from different continents to advance a shared mission in the isolated coastal town of Callao.
To support the innovate partnership between ASPAT-Peru and GlobeMed at University of Chicago in Callao, you can do two things:
1. Make a contribution to the GlobeMed National Office to cover the operational expenses of running GlobeMed at University of Chicago. Contact [email protected] for more information.
2. Make a contribution to GlobeMed at University of Chicago to support microbusinesses for TB patients. Contact [email protected] for more information.
To learn more about GlobeMed at University of Chicago and their partnership with ASPAT, follow their blog here.
Written by Harika Rayala