How did you become a patient advocate?
As a patient with psoriasis and psoriatic arthritis from a young age, I didnít know anyone that had this disease so I started a support group in Pittsburgh. I affiliated the group with the National Psoriasis Foundation (NPF) and we got support and information. As I got to know the members of the support group and hear their stories, I decided that I wanted to dedicate my life to improving the lives of people with psoriasis. I studied civil society organizations and advocacy, and represented NPF, who provided me with training and information. They gave me the basics on how to be an advocate and it grew from there; becoming involved in IFPA and figuring out how to advocate globally.
Over the years what has been your biggest challenge as a patient advocate?
On a personal level it's my health, which is very prohibitive. Travelling can knock me out for days or more than a week. Aside from this, the biggest challenge is trying to understand how policy works and how government works; my own and WHO and the UN. The whole system is such a challenge. Listening to their representatives first-hand makes it much clearer.
How did you learn about IAPO?
A few years ago, we decided at IFPA that we wanted to join with like-minded organizations. I undertook research on which to join and I was attracted to IAPO because of your advocacy with WHO and the variety of your members. The rest of the Board felt the same way; being a member opens up many great opportunities.
What has your involvement in IAPO brought you? I have been able to attend WHOís World Health Assembly last year and the Executive Board (EB) this year, where we were able to get psoriasis on the agenda for the EB in May. Not only that, you've provided me with the information on how WHO works, having access to that experience and expertise is tremendous. These are skills that I will use forever. Another benefit is that IAPOís mission is patient-centred healthcare and I have this support when I remind WHO that the patient voice needs to be heard. How can you make such big decisions without it?
Youíve just returned from the WHO Executive Board, what were the highlights there?
The biggest highlight is that psoriasis is on the agenda for the first time in history, which in itself is a major success. I didnít know what to expect; we had gone to the Executive Board because we wanted World Psoriasis Day to be voted on at the World Health Assembly and when we got it on the agenda for the next Executive Board many asked if I was disappointed, but I was far from it. I was so happy to hear that word ďpsoriasisĒ come out of so many of their mouths. It gives us such an opportunity. Teaming up with Member States to support countries to advocate for psoriasis to be recognised was a great experience. Listening to Member State interventions and Margaret Chanís responses was fascinating.
What do you see as the challenges and opportunities in building an alliance?
Every organization exists to serve their members and even though we have a basic common goal to have the patient voice heard, itís difficult when you are asking people to step outside of their organizations and work towards a global agenda. Everyone is working so hard in their own country and you then ask them to do something else which may not exactly align with their own work at that time. Aligning organizational priorities with global ones is time-consuming. Asking people to do more can be hard, but we need everyone to work together on common issues. Bringing organizations together with one voice and one message makes that message so strong and powerful.
What has been your experience of the emotional pull of patient advocacy combined with the need to influence policy change?
Psoriasis hits on so many issues; physical, with your skin hurting so badly, a high risk of NCDs, human rights and discrimination, disability and mental health. I hear so many stories of discrimination that pull on me to work on human rights. Such as that of a child in Africa whoís been kicked out of seven different schools. Or a woman in the Philippines who wasnít let on a plane because the airline staff would not believe that she wasnít contagious. Or a teenager dropping out of school and wanting to commit suicide. While I do often want to work on individual cases, I know that working with WHO and getting recognition of psoriasis globally will change so many lives for the better. I recently listened to Member States at WHO who did not know what psoriasis is. On a global scale, we need people to understand what the disease is and to achieve this we need awareness.
What keeps you busiest as a patient advocate?
I see opportunities everywhere and that keeps me busy. Iím not the sort of person that can finish a project and then itís done; I just see opportunity everywhere. Even when Iím trying to have down-time, my brain is active and thinking of the next thing. Psoriatic arthritis is my biggest problem and if it wasnít for this cause, I really donít think Iíd be mobile at all.
If you could give one word of advice to other IAPO members what would it be?
Look for opportunities and alignments everywhere. Align with other people and learn from them; those are the opportunities that will help you grow. Listening to others and their experiences offers so much.
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