On April 29, 2019, four patient activists pass through security, insulin pumps in hand, #insulin4all pins fastened to our jackets and “Access to Insulin is a Human Right” on full display under those jackets. Each of us bear the marks of daily diabetes management: little scars where needles draw blood from fingertips, bigger scars where syringes gifted our bodies with droplets of insulin that keeps us alive. We live with type 1 diabetes. We are volunteers representing T1International and people living with type 1 diabetes around the world at the High Level Multi-stakeholder Hearing on Universal Healthcare Coverage (UHC) at the United Nations General Assembly.
This UHC hearing was a precursor to an upcoming meeting in September. The ultimate goal being universal healthcare for every person in the world. Grown from a movement of coordinated advocacy for the rights and dignity of all people, groups from many nations and interests came together that day to discuss strengthening health systems. Some were invited to share their stories. We all shared the same concern: how do we ensure universal healthcare serves the needs of all patients?
The UHC Charter has a list of 6 Asks. As T1International representatives, we were most interested in three of those asks:
Ask 2: Leave No One Behind
People with all types of diabetes and patients with other non-communicable diseases have been left to care for themselves, effectively leaving us all behind. Efforts often focus on prevention rather than care. In cases where prevention is not an option, such as type 1 diabetes, entire patient populations are left without the support and resources necessary to live healthy and productive lives.
How will universal healthcare serve patients with chronic, multi-faceted conditions like diabetes? It can be treated and managed, allowing patients to live full and fruitful lives. Without affordable access to insulin, supplies, care and education, people with diabetes will die painful deaths. Without the most basic need, insulin, patients can die within days. The right to health, the right to live a productive and full life, is a basic human right.
Access to consistent, lifetime care at an affordable cost was sorely missing from the conversations at the Hearing. Only a single mention by one of the guest speakers was made about the soaring drug prices and implications on the health of patients. We are asking the UN, as we are asking the world, stop leaving people with diabetes behind. Most importantly - patients must be listened to, consulted, and truly and meaningfully engaged with. We must be at the heart of any policy-making, otherwise too many will be left behind.
Ask 3: Regulate and Legislate
Abusive monopolies on life-saving medication, like insulin, have paved the way to legally price gouging patients on the cheaply produced drugs we need to survive. We ask governments and policy makers to recognize this horrific violation of basic human rights and put a stop to it. Pharmaceutical companies and their greed must be held accountable. We ask specifically that the price of insulin be made affordable to all who need it. Legislation must be put in place to regulate the price and accessibility of essential medicines.
Ask 6: Move Together
Diabetes is a multifaceted condition. Care requires doctor and patient training, access to appropriate medication and technology, and so much more. Diabetes is also a widespread condition. Every person in the world has a friend or relative with some type of diabetes. For universal healthcare and for the appropriate care of people with diabetes everywhere, for our friends and family, we must move together to ensure everyone with diabetes can live long, healthy lives. We recognize this is not a single hero’s story. We want to see that everyone has gotten the invite and shown up. We can’t reiterate this enough: Together must always include patients.
In September, we want to hear the voices of many patients.
We want to hear from patients living, teaching, and fighting in their communities. We also want to hear about their needs and how they could be better served by universal health coverage. We are not ashamed to be patients; we are proud. We are tired of sad stories where guilt is ultimately placed on patients who were never given what they need to thrive, or in some cases even just to survive. In particular, we call on pharmaceutical companies to show up with true solutions, not the same empty rhetoric. We are dying. There are solutions. It is time to protect rights of health and treatment for people living with diabetes and all those in desperate need of essential medicine – a vital part of health for all.