Five critical issues facing people living with diabetes resurge in Diabetes CarePak landscape assessments

November 14, 2023 by Mary Hodges

Diabetes is a global and growing problem. Recent evidence published by the Lancet projects that 1.3 billion people will have diabetes by 2050.

PATH's Gerald Robi interviews a caregiver for a person living with diabetes as part of the landscaping exercise.

PATH's Gerald Robi interviews a caregiver for a person living with diabetes as part of the landscaping exercise.

While progress has been made in preventing many noncommunicable diseases (NCDs), the World Health Organization found that deaths from diabetes increased by 70 percent from 2000 to 2019, signaling a critical need to disrupt the status quo for how countries are managing diabetes and other chronic conditions.

As part of our work assessing NCD supply chains, PATH uncovered many barriers that people living with diabetes face in acquiring the medicine and products they need to manage their condition. Due to concentration of care and treatment at higher-level facilities, stockouts, dependency on private retail outlets for supply, and high out-of-pocket costs, people living with diabetes are often unable to monitor their blood sugar levels, must ration medication, and reuse insulin needles. This lack of supply leads to greater risk of complications and imposes financial hardship on households. These findings have guided the work of the Coalition for Access to NCD Medicines and Products, a multisectoral group of over 20 organizations, dedicated to strengthening supply security for people living with NCDs through advocacy, technical support, and tool development.

The Diabetes CarePak initiative began in collaboration with Coalition members, including the Kenya Ministry of Health, along with people living with diabetes, medical professionals, local advocates, and other stakeholders. Embracing a human-centered design approach, we're pioneering a co-packaging solution to overcome existing barriers. The CarePak project is being implemented in Kenya, Mali, Mozambique, Tanzania, and Uganda. We teamed up with ministries of health to conduct landscape assessments in each country to understand the most critical challenges diabetes self-management, garnering insights through interviews with people living with diabetes, health professionals, pharmacy staff, and caregivers. These stakeholders then participated in co-creation workshops to develop the prototype CarePak, and in mid-2023 the project initiated user testing of the prototypes.

With the support of global and national stakeholders, we can improve the experience of people living with NCDs by expanding access to products essential for self-care and safe insulin administration. Development of effective solutions – including the CarePak – need to address the most common persistent issues facing people living with diabetes in low-resource settings:

1. Out-of-pocket costs make diabetes management erratic for people living with diabetes.

In the countries where the CarePak project is active, people living with diabetes encounter high out-of-pocket costs for medicine and supplies. In Tanzania, study respondents from each of the four participating regions rated the high cost of medicine and supplies as the most significant barrier they face. In Uganda and Mozambique, the prices of some items, like glucometer test strips, can be marked up as high as 163% above the expected cost. Price markups for self-care supplies inhibit fair access to care, impose financial hardship on households, and contribute to undue stress and poor health outcomes for people living with diabetes in these settings.

2. Medicine or products needed for diabetes management are often out of stock.

Diabetes management often requires several medicines or products which sometimes are only available at different locations. In Uganda, only two percent of participants in the landscape study said their monthly diabetes medicine supply was always available at the health facility. In Kenya, the alcohol swabs needed for injecting insulin and other medications weren’t available at all in three of the four counties surveyed. In all countries, participants also noted uneven access to supplies based on the type of facility and location, further complicating adequate diabetes care.

Most often, study participants who were able to test their blood glucose levels at home struggled to find and afford test trips, which are used in conjunction with glucometers. Test strips are brand-specific and need to match the brand of glucometer used; people living with diabetes often encounter a problem of mismatching in obtaining supplies. Frequent monitoring of blood glucose status can be a critical practice for avoiding diabetes complications.

3. People who need insulin to manage their diabetes are forced to reuse syringes to reduce the cost of their care.

In Mozambique and Uganda, 96 percent of interviewees reused needles and in Tanzania 74% percent reused needles. In Uganda, 27% of the participants used one needle per day, half of the participants used the same needle for an entire week, and 19% used the same needle for more than two weeks. In Mozambique, the cost of syringes led some people living with diabetes to use one needle for as many as 30 days. Reusing needles can cause dangerous or painful consequences, including injection sores and infections.

4. Patients often rely on clinics to get their blood sugar tested.

The vast majority of people living with diabetes in each country did not have access to the tools used to test their blood glucose levels at home. Most did not own glucometers, and the majority were unaware of how to do self-monitoring of blood glucose. This lack of self-care supplies requires them to travel to health facilities for periodic blood tests. Most participants reported going to clinic once a month, while others reported going only when they had money for transport. Participants unanimously found that traveling to a clinic for glucose testing is both inconvenient and expensive, and most facilities experience frequent stock outs.

Recently, the World Health Organization included advice to include personal glucose monitoring devices in its 2023 Essential Diagnostics List. Increased access to self-monitoring of glucose, including as part of CarePak, would address a key issue in diabetes care.

5. There is a critical need for education and capacity building for both health care workers and people living with diabetes.

As part of the landscaping, PATH interviewed health care workers involved in diabetes treatment, identifying a pressing need for more education on recognizing symptoms as well as diagnosing and managing diabetes per national guidelines. Many health care workers lack fundamental skills in counseling and educating people with diabetes to support their self-care. Indeed, in Uganda, most patients had never received counseling about warning signs of diabetes or management of complications, and only one percent received counseling on symptom management. Between a quarter and half of participants in all countries had insufficient education about nutrition and diet, self-care, and diabetes complications. People with diabetes indicated they would feel more confident if they received more education about how to manage their condition, and if services were available at the most decentralized level of the healthcare system, including through community health workers.

Diabetes is a lifelong, chronic condition that makes daily emotional, physical, and financial demands on people living with diabetes and their families. Being able to conveniently access common supplies they need to safely manage their diabetes in one place at an affordable price could greatly improve the lives of people living with diabetes and help them avoid major complications, which can include amputation, blindness, or even death.

PATH, the Coalition for Access to NCD Medicines and Products, and our ministry of health partners will continue to tackle the challenges that health care workers and people living with diabetes face as they strive to manage their blood glucose every day. Results of the initial CarePak user testing among 150 individuals in Mozambique, Tanzania, and Uganda are expected in early 2024. This innovative project has the potential to increase access to essential diabetes self-care supplies and practices, including using daily blood glucose readings to improve clinical decision making. If kitting supplies is found to be an affordable and feasible option, it can help fulfill government commitments to strengthening health systems for universal health coverage and achieve the World Health Organization diabetes targets.

The Coalition for Access to NCD Medicines and Products and PATH are grateful for the technical and financial support of members, and the technical support of the Diabetes CarePak Technical Advisory Committee. Financial support for the Diabetes CarePak project has been provided by The Leona M. and Harry B. Helmsley Charitable Trust, Sanofi, Novo Nordisk and IFPMA.