Elizabeth Pfiester: “I want to help make the world a better place”.

Read the original article in French by clicking here, and follow this link to register for Elizabeth Pfiester's virtual farewell party on 14 September at 5pm Paris Time.

It's the story of a woman who'd rather not have her story told. Because it's not just her story. Because if she has fought, if she still fights, it was never just for herself. Because through her, it's hundreds, even thousands of people all over the world who would need to be named if we are to tell the whole story.

It's the stories of these people that have nourished her day after day, for ten years now, that fuel her inner fire - a mixture of “rage and hope”, a precarious balance between heartbreak and a thirst for justice. It is with them that she has worked to give a voice, a weight, and tools, to those who had none.

This voice is that of T1International, which fights today so that every person living with diabetes has access to what they need to “survive and fulfill their dreams”.

Born in the United States, Elizabeth Pfiester was 4 years old when she was diagnosed with diabetes. For nineteen years, her daily life with diabetes was a never-ending battle with insurance companies, just like for the millions of other people living with diabetes in the USA.

In 2011, she left to study in London, and it was a revelation: “I had read that if you were a student for more than six months in the UK, you could join the National Health Service [UK’s universal health care system, editor's note]. So that's what I did, I went to the doctor through the University clinic to get my prescriptions. Then I went to the pharmacy to get my insulin, strips and everything else. Compared to the US, it was night and day. I'll always remember leaving the pharmacy without having to pay for anything. [...] That experience opened my eyes: I realised that it could work like that, that it should work like that.”

She then started a blog about her travels and life in the UK. At the end of her Master’s in International Development, while researching insulin access around the world, she realised that there was a huge lack of information on the subject. After spending hours and hours gathering bits and pieces of information gleaned here and there, she thought it would make sense to put it all together somewhere, so that those interested wouldn't spend as much time on it as she did. So she set aside her personal blog to get started, and... the wheels were set in motion.

This is the story of a woman who put her finger on something and didn't back down. Little by little, the amount of information grew and, with it, the number of meetings and exchanges. The global situation became clearer, revealed in all its awfulness, so much so that Elizabeth Pfiester began to wonder how to move from information gathering to action: “I wanted to create and find a space for people to do something, but I wasn't quite sure what yet.”

She got involved with various associations, but it didn't go far enough for her: “It didn't fill the gap I'd identified, the absence of a voice for people living with diabetes, of some kind of advocacy that worked towards long-term change. I knew how huge the task would be, so I tried to make sure it wasn't me, without finding it, and it became inevitable: someone had to do it.” 

So she formalised the organization, gathered a board of directors and the community already committed to her side, and together they really got going. This was the beginning of T1International.

Things didn't happen overnight, but rather over a period of years, just like the battles that followed. T1International was not founded by business angels or intrigued investors. There are just a few people who share the same mad courage and deeply human values: “We don't want to shy away from the horrors going on in the world, nor from the influence of the pharmaceutical industry.” The organization is still standing firm, eleven years on, and is not about to be silenced.

With perseverance, daring, and hard work, the project slowly cemented its place in the world. Visitors to their website come from every continent. Here, T1International displays a world map with information on diabetes in almost seventy countries. Today, they have a global advocacy network with representatives from over twenty countries, with whom they work closely. With their “Fight For Five” campaign, they are mobilising to bring about changes in local policies in Panama, Pakistan, India and Zimbabwe, demanding that treatment-related healthcare expenditure should not exceed 5% of a person's income. At the same time, they continue to defend the interests of people living with diabetes at an international level, with the World Health Organization.

The most important recent development has been in the USA, where T1International is particularly active: insulin manufacturers have committed to lowering the prices of some of their insulins. T1International is closely monitoring the effects of this announcement: “Part of our role is not only to encourage change, but also to ensure that it is implemented. But we know that what happens in the US has an impact on the rest of the world.” We could also mention other countries, where, thanks to lobbying, the local population manages to get insulin or test strips onto the list of drugs reimbursed by the state. In Kenya, for example, the price of certain test strips has been reduced. “There is movement and lobbying all over the world. But it's a slow process, which really takes time. And then you have to hope that what's put in place stays in place for as long as possible.”

How do you find the strength to carry on fighting, day after day? It's the collective that carries Elizabeth Pfiester. It's those moments of training in South Africa or Ghana, when the T1International team learned as much as they passed on. The demonstration in front of the Eli Lilly offices in Indianapolis, with nine families who had lost one of their own through lack of insulin, where they shouted out the names of those who had died so unjustly. The names of those who left too soon, because they were born in one country and not another, which Elizabeth keeps inside her like a raw wound. This community, without which nothing would have been possible: “We can do so much more, collectively, when we support each other, than when we're alone. [...] In the media and throughout history, we learn that there is this or that hero who saves everyone, but that's not what happens. We give a face to these historic events, but it's usually thanks to a huge group of people, sometimes even thousands, people who remain discreetly in the background, who don't care about attracting attention.” What they've been able to do together, uniting their voices, is what really inspires Elizabeth Pfiester. It's what makes her want to get up in the morning... as well as, she confides with a half-smile, all those e-mails waiting for her that she can't leave unanswered.

And yet, in a few months' time, she will no longer be the one answering those e-mails. Elizabeth Pfiester is stepping down as Executive Director of T1International. This is her way of ensuring that the organization is always ready to embrace change. From the outset, she felt it was important that T1International's existence did not rest on her presence alone: “I think that's the sign of a strong, sustainable organization.”

It's also time for her to get back to a daily life where everything doesn't revolve around diabetes: “I feel very lucky to be able to do something I'm passionate about. But I'm diabetic, my partner is diabetic and I work around diabetes, so it's all about that, all the time. There's a lot of joy in that but, especially with some of the difficult things we're faced with, it can really be exhausting.”

I'm going to have to find out who I am when I'm not at the helm of T1International.

What will she do next? It's one of the rare occasions in her life when she can... not plan it. The months following her departure will simply be devoted to spending time with her family and reflecting on what's next: “I know I'll have to discover who I am when I'm not at the helm of T1International. Diabetes has always been part of my identity, as I was diagnosed at a young age. But I also like reading and painting. I think I'm a creative person. I have a dog, who I adore and is part of the family. There are so many more things that make me who I am, but I think deep down, I want to be able to contribute, along with many other extraordinary people, to making the world a better place.” And we have no doubt that she will find another way to do so, with the same strength, the same thirst for justice and the same humanity.

This is the story of a woman who would rather that there was no story to tell. But today, all over the world, we need people like her, like Bruna Amaral and Lindsey Bressan (respectively Operations Manager and Development Coordinator at T1International), and also like you, and you, and you, to make our voices heard, recognise our rights and ensure that no one, ever, anywhere, dies of diabetes.

Translation reviewed by Andrea Limbourg.