Advocacy in the face of crisis: upholding patient rights to healthcare

In the chaos of natural or human-made crises such as conflict and war, people affected face myriad challenges to survive. Sometimes, without warning, they are forced to grab what they can and run, only to experience food insecurity, scant shelter and fragmented healthcare systems. People living with a chronic condition like diabetes are particularly vulnerable. They must navigate the hazards of a disaster or conflict while managing a condition that demands constant monitoring and treatment.

Whether natural or human-made, crises often share commonalities and affect people with diabetes similarly. They can happen suddenly and be prolonged with breakdowns in access to basic supplies, shelter, water and food. In parallel, overwhelmed healthcare systems and governments are directing their attention to rescue efforts and treating affected populations, which worsens the situation.

For people with diabetes, essential medicines and supplies, such as insulin, oral medication and test strips for self-monitoring, can suddenly become unavailable or inaccessible. This can result in having to ration or change medication, which can impact diabetes management. Similarly, the disruptions caused by a crisis affect the ability of healthcare professionals to test for and diagnose diabetes and provide care for their patients with the condition.

Even when aid is available, we have seen a new form of warfare emerge in conflict zones with the weaponisation of healthcare and medical supplies. This practice was first brought to light in the Syrian conflict, which began in 2011, and has also been witnessed in the Tigray region of Ethiopia and, most recently, in Gaza.

Healthcare is a right, not a privilege

International and United Nations (UN) conventions on human rights maintain the right to healthcare, emphasising the importance of global health equity. Governments and the international community have three layers of responsibility regarding healthcare, particularly in a humanitarian crisis. These international frameworks and regulations — international human rights law, international humanitarian law, and refugee law — govern the global response to humanitarian crises. Understanding these legal and regulatory mechanisms can strengthen healthcare advocacy efforts and protect the rights of people with diabetes.

Understanding these legal and regulatory mechanisms can strengthen advocacy efforts and protect the rights of people with diabetes. In a disaster situation, organisations and individuals can appeal to these international laws and conventions and relevant UN bodies like the World Health Organization to demand accountability and ensure access to appropriate diabetes care and supplies.

The right to health, as enshrined in various international human rights treaties, requires governments to respect, protect and fulfil the health needs of their citizens, including those with chronic conditions like diabetes. This responsibility remains during humanitarian crises, and governments must ensure that healthcare, including diabetes management, is not compromised.

The Geneva Conventions and other international humanitarian law mechanisms explicitly mandate the provision of healthcare to civilians, wounded combatants and prisoners of war during armed conflicts. This legal framework can be leveraged to advocate for including diabetes care in the humanitarian response, potentially saving countless lives.

The Refugee Convention also recognises the importance of maintaining appropriate standards of healthcare for displaced populations, including those with chronic conditions such as diabetes. Advocacy efforts can highlight the need for continuous diabetes management services for refugees and internally displaced persons.

The International Charter of Rights and Responsibilities of People with Diabetes, drafted in 2011 by the International Diabetes Federation (IDF), sets out the rights and responsibilities of people with diabetes. This charter embraces the Universal Declaration of Human Rights principles of health and human rights and builds on core human rights instruments. Diabetes advocates can reference the rights outlined in the charter and include them in national emergency preparedness plans for diabetes care, prevention, research and education.

Advocating for diabetes care in humanitarian crises

On 4 August 2020, a large amount of ammonium nitrate stored at the Port of Beirut, the capital city of Lebanon, exploded, causing major destruction throughout the city. The explosion directly impacted people living with diabetes as one of the warehouses for the Ministry of Health was destroyed, containing insulin and supplies for blood glucose monitoring.

Cyrine Farhat Chour, an IDF Blue Circle Voices advocate from Lebanon, was able to find help from a global support system of diabetes associations and advocates. Peer support groups worldwide mobilised to send whatever was possible — insulin, test strips, supplies and glucometers.

Successful disaster response does not happen in a silo. It requires the collaboration of multiple stakeholders, including government agencies, international organisations, non-governmental organisations (NGOs), and local diabetes communities. Advocacy efforts should focus on fostering these partnerships and including people with diabetes in the decision-making process.

The seven IDF regional groups are also a source of aid and assistance in a disaster scenario within a geographical region. In 2023, the Disaster Committee of the IDF Middle East and North Africa (MENA) region joined Direct Relief and its local partners to address the urgent need for essential diabetes medicines and supplies for people living with diabetes in Sudan and Sudanese refugees in neighbouring countries. MENA medical associations are also collaborating with Direct Relief to source and deliver insulin through the Egyptian Red Crescent to people with diabetes in Gaza.

The power of keyboard warriors

During an ongoing crisis, advocating for international bodies, parliaments, politicians, and aid organisations can drive support for the needs of people with diabetes to be looked after. However, sometimes the power of the pen, or rather the keyboard, can generate results. The international community learned of the medical blockade in Ethiopia’s Tigray region through the media and social media. Initially, the press in the UK picked up the story that people with type 1 diabetes were dying because they could not access insulin. This awareness-raising tactic shows that diabetes advocates can use unconventional methods to address politicians or policymakers to bring change.

Where advocates can go

At the beginning and throughout a disaster, when healthcare systems fragment and supplies become scarce, preparedness and knowing where to find help are a priority. Initially, seeking internal support before turning to external organisations is best. The first place to turn to is a national diabetes association to leverage its role in helping people with diabetes. They are often the first to respond to the needs of people with diabetes in a crisis. In May 2024, the Brazilian state of Rio Grande do Sul endured an unprecedented climate disaster, declared by the State Government as the ‘largest climate catastrophe in Rio Grande do Sul.’ IDF member Instituto da Criança com Diabetes (Institute for Children with Diabetes, ICD), coordinated a response, mobilising the diabetes community in Brazil to provide crucial support to people with diabetes affected by the disaster.

At the same time, reach out to a national disaster management organisation if there is one. If the response from these organisations is inadequate, contact the international community. Start with other countries, especially neighbouring countries, that can provide help rapidly, then move on to international UN aid agencies.

Through advocacy, the diabetes community can unite policymakers, healthcare professionals, national diabetes associations and other concerned stakeholders to build an international coalition to support people with diabetes during a crisis.

Blue Circle Talk | Advocacy in times of crisis

Hear from passionate diabetes advocates and healthcare professionals the experiences of people living in humanitarian emergencies, especially those with diabetes. You’ll learn how advocacy can amplify the voices of people living in crisis situations and the transformative impact of raising awareness about the unique needs and experiences of people living with diabetes