How UNOPA is improving the prospects of HIV-impacted communities
Many stakeholders surround patients in their quest for diagnosis, treatment and disease management today. Sometimes we hear stories from patients, but today we look at another critical stakeholder – patient associations. These organizations fulfil the common needs of patients and families affected by specific diseases; they serve as a pillar of support; provide a fountain of knowledge and more importantly create a community of caring to connect with individual needs of people learning to adjust and manage their health journey.
We sat down with Lulian Petre, Executive Director from UNOPA to share their mission and goals we have in common towards better health for us all.
What is UNOPA? How were you formed, and what is your mission?
Loosely translated, UNOPA is the Romanian Patient Organization for People with HIV / AIDS; we are the only non-governmental federation in Romania focused on promoting and defending the rights of HIV / AIDS infected and affected persons in Romania.
At our core, we are an organization of parents of children affected by HIV/AIDS. Nearly 30 years ago, in the 1990’s over 10,000 Romanian children had been inadvertently infected with the virus through our national healthcare system1. It was a tragic and difficult situation for many unsuspecting and loving families, and because of this, we found each other and formed numerous support networks within towns and communities to help ourselves and each other through the ordeal. By 2000, several support networks joined into a federation in order to make our voice heard at the national level. Today, our federation is comprised of 24-member associations spread across the country.
UNOPA's mission has always been to promote and defend the rights of people infected and affected by HIV/AIDS. Since 2000, we have been a united, national voice fighting for and representing HIV patients in Romania. Our energy and effort is dedicated to providing Romanian patients with access to ARV treatment and supporting medical services; access to education and information, securing jobs and employment for those affected and removing the stigma and discrimination that often comes with diagnosis.
What a profound mission – you touched briefly on the needs of patients, can you elaborate?
We serve patients of all ages living with HIV in Romania, and they have many needs.
- We provide accurate information, which is especially important for younger people who need to understand about HIV infection; routes of transmission; methods for prevention of infection; and what are safe or risky behaviours that either hinder or help infection spread. To reach our youth, we organize online and offline campaigns, street campaigns, and school campaigns or events for students. We even provide educational scholarships to provide financial assistance for young patients living with HIV.
- Secondly, we provide direct counselling for patients on every stage of their journey. We facilitate access to psychologists for mental health and motivation with staff who are trained professionals and are available for in-person support or via our telephone hotline, which fields thousands of requests for information, advice, and guidance in HIV-related situations.
- Thirdly, and perhaps most importantly, we help to build connections and nurture the community. We aim to help patients to get to know each other through peer support programs and events that motivate groups of patients. Perhaps our most impactful community event is UNOPA's annual HIV/AIDS Forum, which brings together over 100 HIV patients from across the country and today is the largest event of its kind in Romania.
This is a great model to support HIV patients! Surely this formula can benefit others in Romania?
Indeed, it has - in recent years we have expanded to projects for patients with tuberculosis (TB), because the two diseases are closely linked and represent a major public health problem in Romania. Through funding from the Global Fund to Fight AIDS, Tuberculosis and Malaria, we have developed new services to support adherence to treatment for TB and TB-MDR (Multi-Drug Resistant) patients using a multidisciplinary team of physicians, psychologists and social workers. This model is currently expanding and is now supported in 6 counties in Romania.
You mentioned campaigns to reach younger adults, how do you spread the word about your organization?
Community outreach is critical for our organization – in order to reach people living with HIV we rely on each of our 24 local associations that are part of the UNOPA Federation. They are connected with the patients in a county and the ones who can be relied upon to deliver services and support.
We also work through the education system and go to schools providing HIV education programs for students; and we coordinate with World AIDS Day – which provides an even broader communications platform.
Fundamentally, we are a volunteer network – our teams are focused on informing the population through many means; be it out on the streets locally or in cities and urban centres; we share our printed leaflets, telephone hotline number and online resources to those in need.
How did you forge a relationship with Mylan; what brought you together?
It seems Mylan has always had a strong commitment to HIV and ARV therapy – our paths crossed at various public events, and we witnessed Mylan’s involvement with the generics association APMGR. It led UNOPA to discussions with Mylan Romania about directly supporting our own HIV treatment program. Mylan’s interest in providing HIV self-test kits for the Romanian market fit an unmet need and this opportunity led us to the close partnership we enjoy today
Mylan shares part of UNOPA’s mission - fundamentally we both want Romanians at risk of contracting HIV to be better informed about HIV testing, testing services, and opportunity now to do a test at home. To that end, we are launching a “HIV self-testing awareness campaign” with Mylan and INBI Matei Bals in Bucharest. Our shared goals are to raise the number of people testing themselves for HIV while simultaneously lowering the population of untested and undiagnosed-but-infected patients in order to slow the spread of disease.
Thank you so much for your service to HIV patients and partnership with Mylan – as you look to the future, how will you continue to grow and evolve?
We will continue to be here and help HIV patients through information, counselling and support. Hopefully with continued support from stakeholders such as Mylan we can expand our services, help establish new patient associations, and help curb the impact of HIV infection in Romania.
Our partnership with Mylan extends beyond financial support -- we have discovered within your company a shared enthusiasm and passion for tackling HIV globally – and that is something every patient can be thankful for.
Date of Publication: November 2018