In September 2022 Life for a Child held a diabetes advocacy workshop with a focus on changemakers in Latin America. Here is a summary of key points from the workshop. You can also watch the workshop in full in English, Spanish or Portuguese.
Diabetes care in Nicaragua. Meet Jasser, Indiana and Andrés
At 11 years old, Andrés was diagnosed with type 1 diabetes. Getting a diagnosis was difficult, and he and his family were only able to get one after Andrés was emergency-rushed to the hospital. Support and education for those living with diabetes in Nicaragua are limited and many supplies are not easily available, so the family turned to the internet to find out more about Andrés’ new diagnosis.
The family have learned a lot in a short period of time and are now on a journey to raise awareness of the financial challenges many in Nicaragua face when it comes to managing diabetes. believing no Nicaraguan should lack basic supplies, they approached Latin American diabetes associations and joined WhatsApp groups of parents from various countries. They also approached a group of Nicaraguan doctors, who will provide a continuous virtual training plan so that distance is not an obstacle to diabetes education. After attending camps for children and teenagers with type 1 diabetes in Panama and Costa Rica, the family are seeking support in order to host their own camp in Nicaragua, which will take place in February 2023.
Keynote on health and human rights – Dr Martin Hevia
Dr Martín Hevia opened the floor by telling us what the right to health means. The World Health Organization defines the right to health as the enjoyment of the maximum degree of health that can be achieved, independent of race, religion, political ideology, or financial/social conditions. It is inextricably linked to the rights to life, information, proper nutrition, and lack of discrimination.
Dr Hevia noted that the human rights discourse is strong in Latin America, and there are several important related international conventions. (1) The 1976 International Covenant on Economic, Social, and Cultural Rights. (2) The 1989 Convention on the Rights of the Child. Committees in the human rights field in Latin America interpret these conventions, and states are thus obliged to provide all essential treatments and medications within the framework lists for children. This is a tool for social transformation, and can be used to claim the right to health from governments.
Panel 1 – Daniela Rojas, Pilar Gomez, and Gisela Ayala
Daniela Rojas spoke of the many fears present when living with diabetes, including cost, discrimination, stigma, lack of education, and lack of understanding from doctors. When advocating for diabetes rights, she said how important it is to recognise, validate, and treat these fears. Important work done by Rojas’ organisation in Costa Rica includes educating medical professionals about diabetes, raising the percentage of children with diabetes who have access to analogue insulin from 10% 10 years ago to 70% now, and increasing the availability of insulin pumps.
Pilar Gomez discussed the differences between the UK and Panama when it comes to support for diabetes. In Panama, information, education, and access to treatment is limited, with insurance for insulin and consumables difficult to get. Gomez’s organisation created a platform named Odoo, which captures data from over 250 members with type 1 diabetes, alongside an advocacy committee, seven educational programmes, and hybrid physical/virtual camps.
Gisela Ayala spoke to the Mexican movement Por una sola voz, which has developed a robust support programme for those with type 1 diabetes, including camps. This movement, alongside the Mexican Federation of Diabetes, created an online national registry of patients with type 1 diabetes in order to improve their care. The federation also carries out training on the right to health in Mexico, so people can better understand and then demand them.
Panel 2 – Annie Sanchez, Janina Argueta, Laura Ortiz Pinell, and Natan Arioc Pereira Gutierrez
Annie Sanchez discussed the partnership between CLAN and IndigenousNCDs, who collaborate to promote the voices and experiences of indigenous populations in discussions on non-transmissible diseases. Annie noted that according to UN data, diabetes is prevalent among indigenous populations, with 50%-plus of adults over 35 having type 2. Underdiagnosis is a problem, as is a lack of data and limited access to healthcare. Indigenous voices need to be included in health policies where they have not in the past. Health professionals should have intercultural training, and education should be made available for indigenous populations in their native languages.
Janina Argueta spoke of her organisation’s efforts to improve the lives of Guatemalan families with type 1 diabetes, many of whom live below the poverty line. Currently, 300 families are receiving help, in partnership with Life for a Child and chemistry companies in order to improve access to insulin. A handbook is being developed to help educate families in ways they can understand. Obtaining the government’s support is extremely difficult, so this advocacy is vital.
Laura Ortiz Pinell outlined her organisation’s work in Bolivia on organising education activities related to type 1 diabetes, including camps and educational talks. The most important thing is to reach families with fewer financial means. Natan Arioc Pereira Gutierrez outlined the difficulties of the healthcare profession when it comes to diabetes. His hospital has lacked insulin for three weeks and strips for three months. Acute and chronic complications are serious issues, and many patients with financial struggles don’t have access to treatment.
Questions and Answers with Liliana Tieri
Liliana generously shared her own family experience with type 1 diabetes and her advocacy journey, before asking the speakers questions relating to diabetes and human rights. A summary of some of the questions is detailed below.
The first question to Laura Ortiz Pinell.
Q: If you had to define the right to health, what would you say?
A: The first right human beings have is the right to life, and health is closely linked to this. It is physical, social, and emotional wellbeing, not only the lack of illness or incapacity, and the right to preventive services, treatment, and education on health. In addition, people innately need the right environment within which to preserve their health.
The next question was for Janina Argueta.
Q: What should people with diabetes or patient organisations do to participate more in governments’ decision making? Why are we not consulted as much as we’d like?
A: In Guatemala, patient organisations aren’t listened to or consulted because they are not voters. The best way to advocate is to promote private participation and keep patients’ voices raised.
The third question was for Natan Arioc Pereira Gutierrez.
Q: Why do you think youngsters have a high impact when they participate in advocacy actions?
A: Young people are motivated by the fact that those beside them are suffering the same as they are, and the frustration of this gives them the energy to find solutions and make a difference.
The next question was for Pilar Gomez.
Q: In the future, what do you think is the most promising trend to improve the wellbeing of people with diabetes? How can patient organisations help and be innovative in this sense?
A: More education about diabetes would be very valuable, e.g. in the form of a diabetes educator visiting schools, as well as increased availability of analogue insulin. Patient associations can support people with diabetes through the provision of data not supplied by the government.
The next question was for Gisela Ayala.
Q: What kinds of tools can we use to develop actions and campaigns for advocacy? What should we take into account in order to increase the chances of success?
A: Knowledge of the law and relevant rights are key, as patients and organisations need to know what is already in existence and what needs to be changed. In addition, it is necessary to win the wills of lawmakers, and to empower people in the defence and advocacy of their health rights.
The last question was for Annie Sanchez.
Q: How can patient organisations and other international organisations incorporate the active participation of indigenous populations in defence of the right to health in diabetes treatment?
A: The first step is to know the discrimination that exists toward the indigenous populations. They should be included in healthcare programmes. Work also needs to be done with communities to look for common solutions with other organisations.
The role of civil society – Cristina Parsons Perez
More funding is needed for non-transmissible diseases, particularly diabetes, to build up resilient healthcare systems that leave no one behind. Civil society has four important functions in accelerating the global response to these diseases, to (1) create awareness, (2) improve access, (3) guarantee accountability, and (4) instigate political actions.
There are several keys to successfully changing policy. The first is the need to understand the national legal context, the process of law-making, and who has the power to drive change. The second is keeping the perspectives of the affected people at the core of all efforts, in order to bring urgency to the topic and anchor it in people’s minds. The third is active communication, and the fourth is working as a national and global network to show power and strength.
After closing remarks from Mark Barone and Mariana Gomez, the workshop was concluded.
The workshop was presented in partnership with CLAN Child Health and Insulin for Life.