Channelling personal experience to build collaborative partnerships

Brigitte Nolet, Head of Global Health Policy, leads several teams across the world to collaborate with policy makers and other non-government organisations.  Her aim is to develop working partnerships that maximise the value we bring to patients by improving health outcomes.  She also suffers from arthritis and as her team will testify, she values outside perspectives for their ability to inform the next generation of patient needs.

Perhaps I am a non-conformist. Our team has been working on a tool that places value within a holistic framework of societal benefits and cost implications. This way of thinking enables us to better understand external perspectives – from public authorities, non-governmental organisations and patient groups – to inform our approach and reach our ultimate vision of improving patient access to medicines around the world.

“Because when we really listen to those living with, or affected by, a disease we can help drive change.”

I identify strongly with the need to listen to the voices of those outside of conventional pharmaceutical circles. This stems from my life history with arthritis. It all started with a sudden inability to move my right index finger.  At the age of 25, I was diagnosed with psoriatic arthritis and at first I took many different types of medicines every week to bring it under control. For me personally, this regimen was not tolerable and after two years, and a lot of adjustment to my treatment plan, my disease stabilised. Today, my arthritis is stable and I feel lucky to have found the right solution for me. But this oversimplifies the journey.

When it is stable, my arthritis does not interfere with my ability to have a full participatory life both in and outside of work. I have become an expert at recognising triggers that might make it worse, and this helps to keep my suffering in check.  I know to avoid high impact sports, which is tough for someone who played volleyball, soccer and baseball growing up. I know when I play with my daughters there is plenty we can explore together, but I need to be mindful about bending over a lot or playing very physical games with them. I avoid excessive stair-climbing and try my best to maintain a regular rhythm of sleep.

When it flares up, my movement is slow.  But how do I let people know?  I am not one to ask for special favours. I remember that in my 30s, I had a particularly bad day and asked to pre-board at the airport along with the elderly and people travelling with children – this was only because the flight was so crowded, and I knew I would hold everyone up. The steward took one look at me and immediately rejected my request. Eventually, I did board early but ever since then I do not request special accommodations. People living with arthritis rarely appear to be in pain and the misconception that it is a disease of the aged still persists. Arthritis is an invisible disease. I have learned a great deal about compromise.

I realise I am not the typical arthritis patient. But after having the opportunity to work with three rheumatologists in two different countries I have learned that it pays to be extremely proactive in its management. By constantly questioning the treatment approach, by detailing my daily experiences, by noting reactions to medications, by enquiring about clinical trials, by educating myself on the risks implicit with any treatment, I have been able to work with my rheumatologist to find the right level of intervention that works best for me.I respect the limitations arthritis poses, but I do my best to prevent it from taking over my life.

When I muster the courage to share the story of my 20-year long journey in arthritis with some of the external partners I work with, they understand why new innovation is critical to patients. I truly believe in the sanctity of purpose-driven patient organisations, and often find myself protective of their role as I know what it feels like to have them engage on my behalf. The more we can bring in the voices of people living with, or affected by, a disease the more likely tomorrow’s medicines will be innovative; truly developed with the needs of the patient in mind; and accessible to those in need.

Tags: Rheumatoid Arthritis