T1International and Their Global T1D Mission
3/11/16
WRITTEN BY: Michelle Boise
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Founded in 2013, T1International, a non-profit based out of London, is raising awareness on the present condition of Type 1 diabetes care across the globe. They believe that everyone should have access to insulin and other vital diabetes supplies, even if they are in remote and resource-poor areas. By collecting information on care and needs of various parts of the world, this organization is able to employ initiatives on the ground and learn how they can help in terms of education, advocacy and securing life-saving supplies. An expert in international humanitarian affairs, Founder and Director of T1International, Elizabeth Rowley, is building a global community of T1D advocates who can effectively communicate the needs of those who are not often heard. Their daily growing network aims to improve the quality of life of those living with Type 1, because it isn’t an insular problem, confined to the borders of a nation, it’s a global issue that demands all of our efforts in unison. Beyond Type 1 is a proud sponsor of T1International, and we are thrilled to share with you the inspiring work of Elizabeth Rowley and her team.

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BT1: What prompted you to create this organization?

ER: I was diagnosed with Type 1 diabetes when I was 4 years old, so I don’t remember life without it. I studied International Studies at undergraduate university and started to think a lot about what people face during natural disasters and conflict situations. I wondered what it would be like for me or anyone with Type 1 diabetes in a war zone, for example. When you have Type 1 diabetes, finding supplies in emergency situations or in places in the world where healthcare systems are under-resourced is difficult, to say the least.

I moved to London for my Master’s Degree to study about these things more, and started T1International as a blog. I was looking for information on Type 1 organizations that were addressing the situation of lack of access to insulin and supplies across the globe. I found that there was a real lack of action in this area, and also a huge lack of data in terms of numbers of people with Type 1 and what kind of resources they had. Today there still are huge gaps in data, especially in parts of Africa and Southeast Asia. As interest in my blog grew, I wanted to do more and started connecting and working with many people. Now we are a small charity and have connections in over 50 countries. We push for more data collection and carry out research, and we connect individuals with other Type 1s so they can establish a community of support and take action to improve situations. We also try to connect organizations with each other, so they can share resources and learn from each other.

BT1: How do you encourage those with Type 1 to be open about their health needs in countries where having diabetes is a stigma, and in some cases, cause for ostracism?

ER: We have seen that stigma for people with Type 1 diabetes is a huge issue all around the world. In some countries, women are especially mistreated because it is believed that they are unable to have children, be married or generally function the same as other people. For example, our friends in places like Pakistan and Russia have told us that when they were diagnosed, others lamented that their life was over and that they are “doomed.” T1International works with groups and individuals worldwide to connect people so that they can support each other, speak out and combat stigma.

BT1: Can you speak to the success of the #insulin4all campaign?

ER: The #insulin4all campaign was launched in the lead up to World Diabetes Day in 2014 to raise awareness about the lack of access to essentials (insulin, test strips, education, healthcare, etc.) that many people with Type 1 diabetes face around the globe. Although World Diabetes Day began in 1991 in order to “draw attention to issues of paramount importance to the diabetes world,” we felt that the true spirit of the day had been lost.

We were thrilled to see that our awareness campaign gained popularity in the diabetes online community, with many people telling us they had never thought about these issues before. It was great to see over 500 photo submissions from people all around the world, talking about why they support the campaign and spreading the message.

The #insulin4all campaign continued in 2015, supported by The Access Alliance (a network of like-minded organizations), to raise awareness of the most pressing diabetes issues. The campaign has led to many people getting further engaged in advocacy and working with us to push for better access worldwide.

Awareness is the first step and we aim to keep pushing for #insulin4all until it’s a reality.

BT1: Can you talk about your partnership with Access Alliance?

ER: There are great networks in the diabetes community, but we need to unite in order to push for the basics. Many of us have similar, likeminded goals, but we are separate and not connected. There are six organizations who are a part of the alliance, and at least part of their work is focusing on healthcare and access to supplies. We meet once a month to find out how we can support each other. #insulin4all is our group initiative. We each have our own focus, but we are stronger as a community and much more powerful together.

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BT1: Why do you think insulin is so expensive?

ER: : T1International is working for a world where everyone has access to insulin and also to diabetes supplies, education and healthcare in general. One of the reasons that people cannot access insulin is due to its high price. (We see prices in the USA especially skyrocketing.) There are various reasons for this, but one of the main ones is that three companies dominate 90% of the insulin market: Eli Lilly, Novo Nordisk and Sanofi. The “big three” threaten other players or delay them from entering the market, making it difficult and costly for other insulin producers to compete.

Biosimilars are another issue. Insulin is a live hormone (rather than a molecule) and making a generic version called a biosimilar is a lot more complicated and expensive than just duplicating a chemical molecule. There is little market incentive to produce a biosimilar because it costs just as much to make a new drug and must go through all the approval stages and trials that a new drug is required to go through. It also does not benefit from a patent like a completely new drug would.

Over the last decade, there has also been a record rise in the use of analogue (synthetic) insulin which now makes up the majority of all insulin used in high-income countries. Animal insulin was replaced over the past few decades by synthetic insulin. There is concern that human insulin is similarly being replaced by analogues when the benefits of analogues are not necessarily worth the costs. At T1International we question why expensive analogue insulin is the only option available to many who die due to their inability to afford it, simply because a cheaper option isn’t available.

BT1: Why are test strips just as vital as insulin?

ER: Anyone with Type 1 diabetes or a connection to Type 1 diabetes knows that it is nearly impossible to manage your diabetes if you do not know what your blood sugar levels are. Even if you have the insulin that keeps you alive, (which many people don’t), if you do not know your blood sugar levels, you are basically walking in the dark. You can be high or low and not able to treat it or manage it, which is dangerous and causes many early deaths due to complications.

We have a global map tool that shares what it is like to live with Type 1 diabetes in many different countries and it helps to demonstrate this huge need for access to test strips. For example, we learned that in Ethiopia, almost no one with diabetes tests their blood sugar levels. This is because the strips are not available or are completely unaffordable. This is the case for many people worldwide and we have seen more proof of it in our recent access to insulin and supply survey. The state of affairs is outrageous – imagine how anxious you would feel as a Type 1 if you didn’t know your blood sugar.

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BT1: How do you propose to get medications in remote areas?

ER: Lack of access to insulin and diabetes supplies is especially an issue for people in rural and resource-poor areas, especially when there’s an emergency. T1International believes that systemic change is what will lead to lasting improvement in the lives of people with Type 1 diabetes. Although donations of insulin and diabetes supplies are vital, they are not a long-term solution. We want to see a world where no one has to rely on donated supplies, where no one has to wait and fear whether their next bottle of insulin or pot of test strips will be supplied to them, which undermines their dignity and agency.

The best way to ensure access for everyone everywhere, is to push governments to change their policies and work with organizations and health systems so that they have the resources and knowledge to ensure everyone with Type 1 diabetes can get what they need, no matter where they live. We give people the tools to push for this type of change and to advocate for their rights.

This also translates into building diabetes centers in countries and locations that have none. For example, our partners in Sierra Leone recently started the first diabetes center there, which has changed many lives. A wonderful organization called Santé Diabète in Mali has also created a Type 1 diabetes center, which has saved many young people there. We want to see more of this so that people in all areas of the world can have support and access their vital medication.

BT1: Can you talk about the Rights of the Child and what that means to you?

ER: T1International supports every person, no matter their age, and fights for their rights to insulin and diabetes supplies. We have been lucky to work with partners focused on children and adolescents and together have created a document that outlines the rights of the child living with type 1 diabetes. This is based on the UN Convention of the Rights of the Child and allows groups and individuals to learn what their rights are, which can be a powerful thing. Once you understand what you have a right to and have something to back it up, you can begin to advocate for yourself. We’ve shared this widely with partners and worldwide, and it has been hugely empowering.

This will work well with our T1International Access Toolkit, which we are in the middle of creating. This toolkit, with support from Beyond Type 1, will give people around the world the practical tools and inspiration to be able to change policies, lobby governments, and work with health systems to fix the many problems faced by people with Type 1 diabetes. We want to show that anyone can be an activist and a catalyst for change, and our resource will share inspiring examples of where this is already happening.

BT1: You are currently in communities in countries including Nigeria, India and the USA to name a few. What are the greatest needs in these areas of the world?

ER: Access to the basics (insulin, test strips, education, healthcare) is the biggest and most pressing problem throughout the world. Even in the USA people are skipping insulin injections because they can’t afford it, or not testing their blood sugar. There are commonalities all around the world in regards to lack of awareness, stigma, and anxiety of living with the condition, which allow us to relate to each other, even if our circumstances are very different. We need to unite as a global diabetes community and take action to ensure that everyone, no matter where they live, can access their medication and healthcare to stop needless deaths.

BT1: And to where do you hope to expand?

ER: We are truly global in nature. We work with partners worldwide and our advocacy is on a global scale.  We are always looking to expand our map tool and add more countries to it, which is often the start of collaboration. We will support everyone in their efforts for universal access to insulin, diabetes supplies, education and healthcare.

BT1: In an interview with SixUntilMe, you discuss global reach, saying, “Part of the issue we are bringing to light is that the diabetes online community is probably not global enough.” How do you think you can motivate people to care about Type 1 diabetes on a global scale?

ER: It is a challenge, but once people with Type 1 diabetes learn about global issues they are supportive of our mission. In terms of people outside of the diabetes community, we first need to help people understand what Type 1 is and then they need to get a sense of what the challenges are that come with it. It’s about getting people to get a sense of the vital importance of #insulin4all, getting them interested and invested. Many people typically want to get involved and help once they learn about global challenges. We also need more influencers and high profile people in the diabetes community to speak about this and get people fired up.

We are small but mighty, and we are growing and working on developing more actions for people to take. A Type 1 Access Charter is in the works which people will be able to sign onto in support of. Our toolkit will also support people in taking the first steps of advocacy. We are all about partnership and collaborations, so working with the wider Non-Communicable Disease (NCD) community will also help us get our messages to a wider audience.

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Michelle Boise

Michelle believes that a single story has the ability to reshape the world and change your life. She has a BA in English literature and Spanish and a MFA in writing from the University of San Francisco. As a writer, editor and content guru, she's worked on both literary magazines and e-commerce platforms. Before joining the Beyond Type 1 team, she developed health-conscious articles for Fitbit. When she's not writing, you can find her tap dancing in the house with her little white dog or painting with acrylics (they dry faster).