Type 1 Diabetes Is an Overlooked Global Threat. This Health Funder Has Made it a Top Priority

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Noncommunicable diseases (NCDs) are currently responsible for 7 out of 10 annual deaths worldwide. In low- and middle-income (LMIC) countries, they’re responsible for three-quarters of all deaths. A full 86% of those occur before age 70.

The challenges are alarming enough that the WHO made combating four NCDs — cancers, cardiovascular disease, chronic respiratory disease and diabetes — a specific target within 17 sustainable development goals (SDGs). As a category, most people underestimate the harm NCDs cause. Individually, some diseases are especially overlooked.

Type 1 diabetes (T1D) has a particularly low public risk profile, a factor that improbably helped it draw attention from at least one major private funder. T1D’ neglected status, its treatment inequities, and potential to deliver large-scale results attracted support from the Leona M. and Harry B. Helmsley Charitable Trust.

Since 2008, Helmsley has made type 1 diabetes an area of focus, investing more than $1 billion to date in partners and programs to develop new models of care, and stay on the cutting edge of advances in research and technology. A decade ago it began investing in global access to treatment, an area of grantmaking that’s fast approaching $150 million. A total of 31 countries are being touched by the work.

Two recent commitments to the World Health Organization illustrate how it has become a movement builder and a global leader that works across sectors to change the disease’s trajectory.

The disease

T1D is an autoimmune disease that occurs in bodies that are unable to produce insulin, a hormone necessary to convert glucose into energy. Instead, sugar surges into the blood, causing acute symptoms from fatigue to excessive thirst.

Contrary to common misconception, T1D is not a function of lifestyle or eating habits associated with type 2 diabetes. Its most common form is first diagnosed in children and adolescents, a cohort that will see more than 150,000 new diagnoses this year.

The complex and chronic disease saddles all it touches with a lifetime burden of day-in, day-out glucose monitoring, injections and supervised medical care. Even with steady management, it can lead to a wide range of complications and shortens lifespan.

Barriers to treatment are especially entrenched in LMICs, where under-resourced health systems and the prohibitive cost of insulin prevent care. Overall, the collective threat from both types of diabetes is growing exponentially. International cases for types 1 and 2 increased 62%, to 463 million, between 2009 and 2019.

Finding a focus

The Leona M. and Harry B. Helmsley Charitable Trust was cofounded by New York real estate magnates who were less widely known for a portfolio that included the Empire State Building than an eponymous hotel brand that evoked vanities of castles and queens.

Upon Leona Helmsley’s death, vague directives for the trust’s mission opened the door for five trustees who did have a vision, including Helmsley grandson David Panzirer.

Shortly before his appointment as a trustee, Panzirer’s oldest daughter were diagnosed with T1D. In T1D, Panzirer saw an overlooked disease that presented large-scale opportunities for improving lives. He also recognized that the $1 patent decreed by the scientists who discovered insulin wasn’t making the cost of treatment affordable as intended, leading to stark inequities in access. Today, insulin costs up to 10 times more per dose for diabetics living in poorer countries.

If Helmsley Trust’s role was to tackle disparities, the wide gaps in LMIC treatment made it not only a fit, but a priority. As with its other five programs, the T1D program and particularly its Global Access portfolio empowers people to “thrive no matter where you live,” said James Reid, program officer, type 1 diabetes.

The other five programs are Crohn’s disease, Israel, Rural Healthcare in “the upper Midwest and beyond,” children in sub-Saharan Africa, and healthcare for high-needs patients in New York City.

Helmsley brings considerable resources to the work. The trust boasts an $8 billion endowment — higher than Bloomberg Philanthropies, Mellon or MacArthur, and reported $418 million in charitable disbursements in 2022. Reid said T1D accounts for a third of all grantmaking.

A movement builder

Taken together, Helmsley’s two recent commitments to the World Health Organization’s high stakes race to manage NCDs illustrate how the trust has gone from startup to movement builder on both a global and national level.

Nationally, African health ministers united in adopting a new strategy last summer to increase access to the diagnosis, treatment and care of severe NCDs, the chronic conditions that lead to high levels of disability and death if left untreated.

Called PEN-Plus, the strategy aims to move treatment within reach of sufferers by building capacity in local health centers and regional district hospitals. It also promotes standardized treatment protocols for essential medicines, technology and diagnosis, and works to boost health worker knowledge.  

Helmsley has been a supporter of PEN-Plus since 2014, when it was in its development stage, through grantees like Partners In Health and the NCDI Poverty Network. In 2020 and 2021, the trust committed nearly $25 million to bring interventions to scale and adapt lessons learned in countries including Rwanda, Uganda, Kenya, Malawi and Nepal.

In June, the Helmsley Trust granted $9 million to the WHO Regional Office for Africa to ease the implementation of the PEN-Plus rollout through tactics like communications, developing frameworks for sustainable funding by local governments, and adapting evidence-based tools for district-level facilities.

On a global level, Helmsley separately awarded $10 million to the WHO in May to implement the Global Diabetes Compact. Launched in 2021, its goals are to ensure that all people with diabetes have equal access to quality treatment and care, understand risk reduction, and have the know-how to take preventive measures for type 2 diabetes. One of its most urgent moves is increasing access to scarce and expensive diagnostic tools and insulin in LMICs, where cost barriers are particularly high.

A change in momentum

James Reid said the global fight against T1D has reached an inflection point in LMICs on a number of different fronts.

Big picture, Reid calls the WHO’s Global Diabetes Compact a catalyst for large-scale engagement across sectors, and a conduit to “a lot of political buy-in” on acheiving global care targets through things like updating technical guidance and standardizing forecasting tools.

LMIC countries are also acting in concert to address NCDs. Academia and governments in a number of African countries are united in their commitment to change the future of treatment. Reid notes increased government leadership, calling the unanimous 2022 vote adopting PEN-Plus by the regional body of African Health Ministers “an exciting moment.”

He also hailed the unified way in which stakeholders are coalescing around the roll-out of potential interventions and the movement toward adopting an integrated life cycle approach to diabetes that, with bold investments, can be a game-changer in the end-to-end way diabetes is understood and even prevented.

Combined, he sees the momentum shifting. “Where we’ve been,” said Reid, “is not where we’re going.”