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Education days are key to the efforts of DiabetesLATAM, a patient advocacy group that nor only works to get patients donated medications and supplies, but the education needed manage diabetes effectively. Here, a child receives an insulin pen at a DiabetesLATAM education day. (Photo Courtesy of DiabetesLATAM)
How can a small nonprofit patient association, equipped with donated medical products, activate better systemic access to medications and higher quality of care? The story of DiabetesLATAM reveals that it can be done by empowering a community of patients to approach their condition, and their healthcare providers, with a vision for better care.
Pilar Gomez, DiabetesLATAM’s founder and director, started the NGO after moving to Panama in 2017. Until then, Gomez had worked as an instructional designer and project manager for Citigroup in Emerging Markets and as a freelancer designing training programs for Shell, Petrofac, Kaplan and Schlumberger in the U.S., UK, Latin America and Asia.
She also had a son and a daughter, and with time, they both were diagnosed with Type 1 diabetes.
Pilar Gomez with her kids, Nico and Hannah. (Photo courtesy of DiabetesLATAM)
“I met with one of the seven endo pediatricians in the country, asking her where the charities, summer camps and support groups were,” Gomez recalled. “She replied, ‘There is nothing in Panama and a lot to do.’”
Type 1 Diabetes In Panama
In Panama, there are currently 1,755 people with Type 1 diabetes. This is according to the Type 1 Index, a data simulation tool informed by published data and a survey of over 500 endocrinologists across the globe. The Type 1 index also estimates that 600 of these people in Panama are children.
Two government agencies run the public Panamanian healthcare system: (1) the paycheck-fueled Social Security (Caja de Seguro Social, or CSS) and (2) the Ministry of Health (MINSA) system, which is typically utilized by people who are unemployed and for those working in the informal sector and not registered as employed. There are also private hospitals that require private insurance or payment out of pocket.
Though treatment provided by both public options is equally comprehensive in theory, the reality is that the country’s health system is short-staffed, making it challenging to provide timely care. “They’ll say to you, yeah, we can get you an appointment, and you can pay $5,” said Gomez. “But the waiting list to see an endocrinologist can be five years. So effectively, there’s no coverage.”
There is also a severe shortage of medications throughout the year at the hospital network funded by the Social Security Fund. “If you read their list of medications, you’ll find all the different kinds of insulins, but you must go every month to collect your insulin. And one month, they might have insulin, but they don’t have test strips, the next month, they might have test strips, but they don’t have glucose meters. And then they don’t have one of the two types of insulins,” said Gomez. “So effectively, there’s no there’s no insulin and supply security.”
Pushing for Change
Gomez was determined to help — kids like her own needed reliable access to insulin. Through contacts at the International Diabetes Federation, she got in touch with the Life for a Child team, an Australia-based NGO that, in partnership with Direct Relief, provides insulin to young people in 45 under-resourced countries.
When plans to provide insulin and education through a local hospital fell through, Gomez created a completely volunteer-run program separate from the hospitals for families that don’t have guaranteed insulin access. The program began in August 2022 with 30 kids enrolled, and in the last two years, it has grown to support 150 kids with diabetes care. That means that DiabetesLATAM now provides care for roughly 1 out of every 10 people living with Type 1 in Panama, according to the prevalence numbers from the Type 1 Index.
Youth and their adult caretakers at one of DiabetesLATAM’s education days. (Photo Courtesy of DiabetesLATAM)
A companion is required to attend the training with each participant. “We believe that support and education works better when your environment is also supportive and educated,” shared Gomez. (Photo Courtesy of DiabetesLATAM)
Participants learn about how to help manage their blood sugar levels through healthy eating. (Photo Courtesy of DiabetesLATAM)
Thermal packs are prepared for participants to transport their insulin back home. (Photos Courtesy of DiabetesLATAM)
Given the importance of education in diabetes management, there are three education days each year. At the end of those days, the program participants receive the insulin and other medical products they need for the next four months. Snacks and lunches with the appropriate amount of sugar are provided, and education sessions are customized for the different age groups. Participant caregivers also undergo their education sessions. They also have a medical room where each kid is weighed, their A1c level (average blood sugar measurement) is checked, and their medical record is updated digitally.
“What we’ve done is create a diabetes clinic because we see people every four months, which is roughly how often you’d see your doctor in the private sector,” said Gomez.
And recently, DiabetesLATAM garnered some public support from the Ministry of Health. On September 12, 2023, the organization participated in a public signing of a memorandum of understanding with Panama’s Ministry of Health, which was essentially an agreement to help expedite the complex process of importing donated medical products and support the organization’s outreach efforts.
Pilar Gomez, Director of DiabetesLATAM, and Luis Francisco Sucre, Panama’s Minister of Health, signed a MOU on behalf of their organizations in September 2023. (Photo Courtesy of DiabetesLATAM)
DiabetesLATAM and the Ministry of Health signed a MOU, signaling a partnership on behalf of those with Type 1 diabetes, in September 2023. (Photo Courtesy of DiabetesLATAM)
What Now?
For Gomez and her team, advocacy begins with patient education and empowerment. On education days, caretakers are taught how to make the most of the 15-minute consultations provided by doctors in public systems. DiabetesLATAM has also introduced the use of insulin pens to patients. There are several benefits to using an insulin pen over using a vial and syringe: it increases dose accuracy, features less painful needles, and allows for easy insulin injection outside the home.
Patients now talk about these new devices and research on their effectiveness with their doctors, helping them realize that pen use increases adherence to a treatment plan. “And so [the patients] become the people who open the mind of their doctors,” Gomez shared.
A youth participant of DiabetesLATAM receives an insulin pen. (Photo courtesy of DiabetesLATAM)
Her team recently used this time and ran focus groups to gather information for patient roadmaps that outline all the steps patients have to take if they need diabetes care and are a part of the Ministry of Health or Social Security system.
“When we do advocacy [with government officials], we take these documents with us,” said Gomez. “Some people say, ‘Oh, but those people have medical coverage, and at such and such hospital, there’s that insulin,’ and then we reply, ‘Yeah, but look at the roadmap for them; they have to follow 25 steps, they have to queue in the pharmacy for two hours, then they have to go back to the doctor for another stamp, then they need to wake up at four in the morning to do their lab work.’ So it [acceptable diabetes care] might be in writing, but this is in reality what people are going through.”
For Gomez, this was never about just handing off insulin.
“Inevitably, when you get 400 people in the same space for eight hours, there’s something that changes within them, even if it’s very difficult to measure,” said Gomez. “I think you feel lonely battling the system, poverty, difficulty, sleepless nights. And then when you come together, and you realize that you’re one of many, something changes within.”
“And I believe people become stronger, either to carry on living the way they are because they know that they’re not alone or to make certain changes and to approach their life and the system that they’re obliged to use in a different way.”
Since 2022, Direct Relief has provided DiabetesLATAM with over $950,000 worth of insulin and other medical products, as well as a double-door pharmaceutical-grade refrigerator for insulin storage.
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