Interview with Andrea Medina, FOICH President
Who are you and what is your relationship to OI?
I am Andrea Medina, founder and president of the board of the Fundación de Osteogénesis Imperfecta Chile, FOICH. I have OI for this my interest is generating actions that allow other people with OI to develop in their lives, just as I have. I am a journalist and I have a master’s degree in communication from the University of Santiago de Chile.
How many people with OI does Chile have?
According to our register, we have 113 people with OI in the country. However, we estimate that there are more than 250 people.
Can you tell us about the situation for people with OI in Chile?
People with OI in Chile live a very different reality depending on their access to health, their economic situation and their place of residence. People who live in Santiago, the capital of the country, have more access to medical benefits and social inclusion, compared to people who live in other regions of the country.
Can you tell us about your organization?
FOICH was founded on December 18, 2017 as a non-profit organization. But we started working almost two years before. It was founded by seven people, of whom five have OI and the other two people are direct relatives of people with OI.
Our main objective is to generate actions for the social inclusion of people with OI, through collaborative work with family, professionals and other national and international organizations.
Our management is focused on the directory, which determines the actions and initiatives that are carried out, as well as the planning of the foundation.
How many members do you have? How do you recruit more members?
We have registered 113 people with OI, who participate in our actions together with their families. To incorporate more people, we ask that they sign up for our register, which has response options for people with OI and without OI.
What are the biggest challenges for your organization?
Our first and greatest challenge is to know the number of people with OI in Chile, to know where they live and what their reality is. Chile does not have official figures of people with OI from government organizations, so it is very important to be able to establish this number in order to trace the next steps.
Another important challenge is to create links with the doctors and institutions that care for people with OI, because the treatments differ from where they live and, in addition, the health services do not have a unified protocol for the application of bisphosphonate in people with OI. There are also problems of access to certain medical supplies, such as nails for operations.
Do you have projects you want to tell us about? What is your biggest success?
Our greatest success is knowing that there are at least 113 people with OI in Chile thanks to our Cadastre (database). This is a permanent initiative and we will not stop having it until we know of all the existing cases in the country.
The current reality of Chile has changed our projects lately. First the social outbreak (politicial protests) of October 2019 affected us in our plans to meet and now the Coronavirus Covid-19 is making us rethink our plans for this 2020.
What are your plans for the future?
We want to strengthen ties with doctors and health professionals to help us improve the quality of life of people with OI, as well as we want to take the necessary steps to incorporate OI treatment into the benefits of the Ministry of Health, to increase access to these and decrease their costs.
In addition, we have a big job to make OI visible in the country, so that the rest of the community becomes aware of our condition. Last but not least, we must continue to strengthen our FOICH community, in order to have greater ties between us in the whole country.
HEARING LOSS PROJECT IN CHILE
We are happy to inform you that our new OIFE-member Fundación de Osteogénesis Imperfeta are currently part of a project to investigate prevalence of hearing loss in people with OI in Chile. The first project on hearing loss & OI we have heard about for quite some years now.