We are extremely grateful to our friends at Knowledge Ecology International for reading this statement on our behalf at the hearing.
The high price of life-saving medications, including the rising prices of insulin, are killing people living with NCDs worldwide. Families are being financially ruined here in the United States, and around the world. This reality is not complicated to understand but it is impossible for us to live with.
T1International is grateful for the opportunity to provide this testimony on behalf of patients and people that care for those living with type 1 diabetes. To be clear: we are shocked and outraged that the Zero Draft of the Political Declaration for the High-Level Meeting on NCDs makes no reference to soaring drug prices. It is disturbing to us that the document makes no mention of the cost of insulin, a WHO essential medicine that millions of us need to survive.
Governments and civil society have the obligation and the right to enforce transparency and reduce prices, including by using TRIPS flexibilities, as was mentioned in the previous UN High Level Meetings on NCDs and in many other UN resolutions and reports. This should not be controversial in 2018.
Why was the urgent need for all governments to increase affordable access to medicines not addressed in this draft? We believe this is the result of extensive pharmaceutical company money, and lobbying, including influencing some so-called ‘civil society’ groups working on the NCD response.
It is a strategic mistake to frame access to medicines as a challenge that can be resolved through prevention and increased resource allocation by governments. Type 1 diabetes cannot be prevented, nor can several other NCDs that also require lifelong access to medicine. If prices are not reduced, limited government resources will be given to pharmaceutical companies that are buying institutions to turn a blind eye on high prices. What is needed is affordable, universal access to insulin. What is needed is the same courage as the fight for affordable antiretroviral medication for HIV/AIDS.
We implore UN Member States not to forget patients. It is vital that governments, the WHO and UN agencies engage with patient groups that are free from conflicts of interest. T1International does not accept money from pharmaceutical companies or any other body that we feel might influence our ability to stand up for the rights of people with diabetes.
No one should have to fundraise for the cost of life-saving medicines, nor should anyone die because they can’t afford them. Sadly, this is happening regularly worldwide. In the USA, 25% of patients with type 1 diabetes we surveyed have rationed their insulin due to cost. This is unacceptable.
We call upon this group to remember its responsibility to protect our human rights to life and dignity. We implore you to put lowering drug prices at the top of the agenda of this UN High Level Meeting on NCDs.