One of IDF Europe's main activities is Policy and advocacy and perform both at European and at regional-national level.
At European level, our main targets of IDF Europe are the EU Institutions (European Parliament and European Commission), the Council of Europe and the World Health Organization European Region.
At national level, the Federation acts as a bridge for its Members by informing them on the latest policy developments Europe-wide. This way, national members can perfom their policy and advocay activities at natinal level, taking EU level ones as a reference.
Valentyna, can you shortly describe your involvement in diabetes?
I have been active in diabetes causes since my daughter, Oksana, was diagnosed in 1981 at the age of two. Scary to think I have been living with diabetes for 35 years. My world is mostly about diabetes, but that is my choice. I made that choice when Ksusha was diagnosed and she “restarted” her life at the hospital after one week in a coma, without hope, and one month of rehabilitation during which I spent a lot of time looking at all of the tubes and wires attached to her.
During this period, I made her the promise that we would not stop until we found a cure for her and millions more like her. I’ve been blessed with an incredibly interesting life. Neither diabetes, nor something else will stop us from living as positively as we can.
I’m not a medical professional but after more than 25 years of involvement in the diabetes movement, I am professional NGO leader.
What are the main changes you have seen in diabetes prevention and management since you became a patient advocate?
Of course the quality of diabetes care has changed dramatically in the last 30 years, but people with diabetes still have many problems.
When I started patient advocacy more than 25 years ago, patients didn’t really have a voice in healthcare policy at the national and at the international level. Today, and to my great honor and pleasure, patients are much more involved than before in the development of healthcare policy. We are heard by the European Commission, by the national Parliaments, by the UN. Decision makers start to take into consideration the perspective of the patients.
I like to think that patient organizations are realizing that they must be involved, with all the challenges that are in the system: regulatory process, clinical trials, etc.
Which charity benefited from your prize donation of €10,000? Why did you choose it?
My ‘day job’ is with the Ukrainian Diabetic Federation (UDF), a member of IDF since 1996, and I donated the Prize to this organization.
With several exciting programmes and projects coming up, we needed more active volunteers to achieve our goals for 2016 and to exceed the expectations of those we serve.
Communication is the main problem that hinders the development of UDF. Thanks to this award we managed to expand the diabetes movement all over the country through our new project “Internet for diabetes future”.