An international group of patient advocates living with type 1 diabetes share their perspectives about the impact of the pandemic on their countries, communities and personal health.

Covid-19 continues to spread around the globe, and approximately 10-15% of cases require medical attention and sometimes intensive care treatment.^1,2 For people with type 1 diabetes (T1D), not only are there practical and logistical worries, such as access to healthcare services, medication and medical supplies, there is also an impact on their mental health.

Chronic care is easily overlooked when the world’s attention is mainly focused towards care around covid-19. People with diabetes are considered a high-risk patient group for covid-19, with an increased risk of hospitalisation and intensive care with severe outcomes and mortality.^3-5

Access to diabetes care, insulin, and supplies was already problematic in large parts of the world before the pandemic.⁶ Now, with important infrastructure, such as outpatient clinics and public transport severely limited, access issues have been exacerbated, despite the fact that people’s daily self-management, sick day management, and survival depends on them.

Covid-19 has already had an impact on the health and care of people with diabetes. While some care teams in countries like Germany,⁷ the Gulf Cooperation Council member countries, the UK⁸ and the USA^9,10 are switching care to telemedicine consultations and/or supply deliveries via mail order, in Tanzania, Ghana and Lebanon the cost of, and access to, essential insulin and supplies is being further compromised by lockdowns, curfews, or advice not to travel.

In India, the nationwide lockdown of 1.33 billion people limited opportunities to exercise and restricted routine healthcare visits. This means that many people with diabetes are struggling to keep their glucose levels in range, and some are developing diabetes-related complications. In a recent publication, Ghoshal et al used predictive models and projected that the duration of lockdown is in direct proportion to the worsening of glycaemic control in patients with diabetes.¹¹ Increased diabetes-related complications will put additional load on an already overburdened public healthcare system.

In Latin America, Costa Rica, Chile, Colombia and Argentina make sure that people with diabetes have access to insulin, meters and test strips. Most other governments, Bolivia for example, cannot assure continuous access to supplies. Now that borders are completely closed, people with diabetes are unable to see their doctors and pharmacies are running out of supplies. Covid-19 cases are increasing and there is limited capacity in hospitals for people who require hospitalisation. 

In Kuwait, the number of people diagnosed with covid-19 has increased, especially in high-density population areas. These areas are currently under quarantine, and no one is allowed to enter or to leave. Most of the residents in these areas are people on low incomes, and some have lost their jobs due to the lockdown. This could lead to future complications for people living with chronic conditions due to a lack of access to healthcare as well as medication and food shortages.

In Tanzania, the leader of the national medical association recently advised the government to provide enough medicine and other supplies for people with diabetes and other chronic conditions for up to 3 to 6 months. The ministry of health issued guidelines for distribution to those in need. People with diabetes are facing shortages of intermediate acting insulin almost everywhere in the country. The Tanzanian Diabetes Association has demanded discussions with the medical store department.

In South Africa, many people have lost their jobs, businesses or had to take salary cuts during lockdown. This will result in people not being able to pay their medical aid (medical insurance) contributions, and one unpaid premium results in suspension. Other financial institutions have offered payment holidays, but medical aid companies have not offered this option. If someone is unable to afford medical aid, they need to get their medicine from the government but the government has limited resources. We have heard of one case where the government clinic did not have insulin and told the person to “come back next month”.

In the USA, some insured and uninsured people with diabetes rely on travelling to other countries, for example Canada or Mexico, to access affordable insulin. With the current travel restrictions, they have no choice but to pay the exorbitant insulin market prices in the United States.¹² Some programmes have been introduced by manufacturers to help patients access medication, but with many exclusions, and not everyone with diabetes qualifies.^13-16 Many people have lost their jobs, either permanently or temporarily, and so also their health insurance, adding further stress.

In addition to individual country and region-specific challenges, there has also been an increased mental health burden because of the pandemic, especially for people living alone. People with T1D are struggling to balance the need to leave the house for work or necessary hospital visits with the desire to self-isolate and self-protect. Self-managing T1D already causes a high cognitive load and mental health burden, and the current pandemic is adding to that.¹⁷

Many countries currently lack advice and specific support for people with chronic health conditions due to the focus on more urgent health needs. Mental health is not being sufficiently addressed by healthcare systems in the Gulf, African and Latin American regions. Private mental health clinics, if they exist at all, are closed due to lockdown

The concerns and fears of people with diabetes have increased and there is much uncertainty about the future. Despite being told that people with T1D are higher-risk patients, there is little reassurance and support for people with diabetes, adding to stress levels and feelings of being perceived as disposable and too complex to treat if sick with covid-19 because of an underlying chronic condition.¹⁸ These concerns have been aggravated by reassurances from authorities and the media to the public that “the majority” and/or “healthy people” are at low risk of developing poor outcomes with covid-19 and “only the sick” are the ones who might die.

The potential increase in diabetes-related complications is likely to put an additional load on overburdened healthcare systems around the globe and heighten the risk of covid-19 infections among patients with unstable glucose levels. There are also a variety of other covid-19 impacts and implications for people with diabetes that need to be explored further. 

Corresponding authors:

Elizabeth Pfiester (@erpfiester) is the founder and executive director of T1International, a non-profit advocacy organisation representing people with T1D around the world. She has lived with type 1 diabetes for 28 years.

Katarina Braune (@friendocrino) is a medical doctor and researcher at the Department of Paediatric Endocrinology and Diabetes of Charité University Hospital Berlin (Germany), co-chair of the Berlin chapter of the NGO Hacking Health and a spokesperson in various national and international diabetes organisations. She has lived with type 1 diabetes for 19 years.

Contributors:

Apoorva Gomber (@ApoorvaGomber) is a medical doctor, spokesperson in national and international diabetes forums and co-founder of Diabetes India Youth In Action (India). She has lived with type 1 diabetes for 12 years. 

Daniela Rojas is a certified psychologist, advocate and spokesperson for the T1D community in Costa Rica and Latin America. She is the co-founder of the youth diabetes camp in Costa Rica and is a board member of Asociación Día Vida. She has lived with type 1 diabetes for 27 years. 

Mohammad Al-Bahar (@MohammadAlBahar) is the founder of Diabetes Ambassadors Program (NGO), and a researcher, policy maker and public speaker for people with T1D and member of the League Of DiAthletes. He has lived with type 1 diabetes for 33 years.

Karyn Wofford (@KarynWofford) has type 1 diabetes and is an advocate. She is a writer, and executive director for Second Hope for Diabetes, a US-based nonprofit which raises type specific diabetes awareness.

Laura Ortiz is an advocate and spokesperson for people with type 1 diabetes in Bolivia, where there are no foundations or aid programmes for diabetes care.

Johnpeter Mwolo (@Mwolojohn) is a laboratory technician in Tanzania and a Pamojan Advocate. He has lived with type 1 diabetes for 14 years.

Yaa Bimpeh (@BimpehYaa) is a registered nurse in Ghana, a member of Diabetes Youth Care (DYC), a Pamojan advocate, a member of the League Of Diathlete (LOD)and a global advocate for T1International. She has been living with type 1 diabetes for 18 years.

Estelle van der Hoven is a patient advocate based in South Africa. She has been living with type 1 diabetes for 24 years.

Cyrine Farhat (@CyrineFarhat91) is a global diabetes advocate for T1International, and founder of @positiveonglucose, the first diabetes blog in Lebanon which is registering to become a NGO. There are no NGOs in Lebanon that advocate for rights to access to insulin. She is a life coach and hosts weekly virtual support group sessions for people with T1D in Lebanon and the MENA region. She has lived with diabetes for 13 years.

Competing interests: None declared.

Acknowledgements: All authors are global advocates of the non-for-profit organization T1International (@t1international).

 

1. Grasselli G, Pesenti A, Cecconi M. Critical Care Utilization for the COVID-19 Outbreak in Lombardy, Italy: Early Experience and Forecast During an Emergency Response. JAMA. 2020;10.1001/jama.2020.4031. PMID: 32167538
2. Remuzzi A, Remuzzi G. COVID-19 and Italy: what next?. Lancet. 2020;395(10231):1225-1228. PMID:  32178769
3. Roncon L, Zuin M, Rigatelli G, Zuliani G. Diabetic patients with COVID-19 infection are at higher risk of ICU admission and poor short-term outcome. J Clin Virol. 2020 Apr 9;127:104354. PMID: 32305882
4. Zhou F, Yu T, Du R, et al. Clinical course and risk factors for mortality of adult inpatients with COVID-19 in Wuhan, China: a retrospective cohort study. Lancet. 2020 Mar 28;395(10229):1054-1062. PMID: 32171076
5. Barron E, Bakhai C, Kar P, et al. Type 1 and Type 2 diabetes and COVID-19 related mortality in England: a whole population study. https://www.england.nhs.uk/wp-content/uploads/2020/05/valabhji-COVID-19-and-Diabetes-Paper-1.pdf, accessed 18th June 2020.
6. T1International. Costs and Rationing of Insulin and Diabetes Supplies: Findings from the 2018 T1International Patient Survey. https://www.t1international.com/media/assets/file/T1International_Report_-_Costs_and_Rationing_of_Insulin__Diabetes_Supplies_2.pdf, accessed 20th April 2020.
7. Braune K, Boss K, Schmidt-Herzel J, Raile K. Digital Diabetes Clinic. http://www.digital-diabetes-clinic.de, accessed 10th June 2020.
8. Murphy HR. Managing Diabetes in Pregnancy Before, During, and After COVID-19. Diabetes Technol Ther. 2020;22(6):454‐461. PMID: PMID: 32396397
9. Jones MS, Goley AL, Alexander BE, Keller SB, Caldwell MM, Buse JB. Inpatient Transition to Virtual Care During COVID-19 Pandemic. Diabetes Technol Ther. 2020;22(6):444‐448. PMID: 32396395
10. Garg SK, Rodbard D, Hirsch IB, Forlenza GP. Managing New-Onset Type 1 Diabetes During the COVID-19 Pandemic: Challenges and Opportunities. Diabetes Technol Ther. 2020;22(6):431‐439. PMID: 32302499
11. Ghosal S, Sinha B, Majumder M, Misra A. Estimation of effects of nationwide lockdown for containing coronavirus infection on worsening of glycosylated haemoglobin and increase in diabetes-related complications: A simulation model using multivariate regression analysis [published online ahead of print, 2020 Apr 10]. Diabetes Metab Syndr. 2020;14(4):319-323. PMID: 32298984
12. Fralick M, Kesselheim AS. The U.S. Insulin Crisis – Rationing a Lifesaving Medication Discovered in the 1920s. N Engl J Med. 2019 Nov 7;381(19):1793-1795. PMID: 31693804
13. Lilly. New $35 Co-Pay Now Available Through Lilly Insulin Value Program in Response to COVID-19 Crisis in U.S. https://investor.lilly.com/news-releases/news-release-details/new-35-co-pay-now-available-through-lilly-insulin-value-program, accessed 20th April 2020.
14. Novo Nordisk. Our actions & contributions to fight COVID-19. https://www.novonordisk.com/contact-us/coronavirus-updates/our-actions-and-contributions-during-COVID-19.html, accessed 20th April 2020.
15. Sanofi. Our Response to COVID-19. https://www.sanofi.us/en/about-us/our-stories/our-response-to-COVID-19, accessed 20th April 2020.
16. T1International. Statement on Insulin Manufacturer’s Responses to COVID-19. https://www.t1international.com/blog/2020/04/07/t1international-statement-eli-lillys-35-insulin/, accessed 21st April 2020.
17. Dubey S, Biswas P, Ghosh R, et al. Psychosocial impact of COVID-19. Diabetes Metab Syndr. 2020;14(5):779‐788. PMID: 32526627.
18. Skinner T, Speight J. Supporting people with diabetes during a pandemic. Diabet Med. 2020;10.1111/dme.14320. PMID: 32407569.