Congress boosted Type 1 diabetes research. Who will actually benefit?

I have lived with Type 1 Diabetes (T1D) for almost nine years and rely on health technologies to keep me alive. My Continuous Glucose Monitor (CGM) alerts me before my blood sugar becomes fatal, allowing me to sleep more safely, focus better in class and work out with less fear. These tools are not conveniences – they are stabilizing safeguards for a condition that never goes away.

I was fortunate to grow up in Australia under a centralized healthcare system that fully subsidizes CGMs. Access was treated as a given, not a privilege. But it wasn’t until I moved to the U.S. to attend Stanford that I realized access is conditional. Just the other day, I went to my local CVS pharmacy to collect my monthly supply of CGMs, and the receipt read $1,599. At home, the same supply would cost $0. These disparate prices are not accidents of science; they are the product of policy.

On Feb. 3, Congress extended the Special Diabetes Program (SDP), increasing annual federal funding for T1D research from $160 million to $200 million through the end of the year. This latest bipartisan renewal secures over $3.5 billion in total research investment since the program’s creation in 1997. This is good news, but it fails to guarantee adequate care for those who need it.

The SDP is a government-funded initiative whose capital has helped power some of the most significant advances in diabetes care over the past quarter century, including CGMs, Insulin Pumps and islet cell transplantation. These innovations have transformed what daily life with T1D can look like. For the over two million Americans living with T1D (approximately 20% of the global T1D population), such technology has meant fewer dangerous blood sugar swings, reduced long-term complication risks and greater independence.

But there is a harder question we should be asking: when Congress funds innovation, who actually reaps the benefits?

T1D requires constant attention, time and access to reliable medical care. Older treatment methods involved multiple finger pricks a day, insulin injections and strict diets (usually keto), a difficult routine to juggle around changing work schedules, housing insecurity or limited access to doctors and pharmacies. New technologies that automate much of this work and make expensive doctor’s appointments less frequent can revolutionize ease in care, but their price tag is exorbitant.

Without insurance, a new insulin pump can cost over $8,000 out of pocket, not including another $2,000 to $6,000 per year for ongoing pump supplies.

Even with insurance, access in the U.S. is layered with administrative hurdles. Prior authorizations, prescription renewals and coverage uncertainties create constant instability for patients. For many in the T1D community, especially those without private insurance, their limited supplies force them to ration necessary care. The choice between insulin and rent should not be one people have to make.

Even FDA-approved technologies cannot rely on the National Institutes of Health (NIH), which administers SDP funding, for mass distribution. Cost barriers persist, insurance coverage is inconsistent and prescription practices vary. Federal research funding cannot determine how the discoveries are actually used and distributed in the market. Access is also determined by social risk factors including race, income, geography and employment status.

Black T1D patients are less likely to be offered or prescribed baseline technologies including CGM and PUMP than non-Black patients. If cutting-edge diabetes devices are only available to those with stable private insurance and financial resources, innovation will reinforce health gaps instead of reducing them.

In California, our senators and representatives represent the center of biomedical innovation and technology development. Silicon Valley is synonymous with disruptive, innovative progress. Stanford benefits directly from the federal research ecosystem: our labs generate breakthroughs, our startups commercialize them and our region markets itself as the future of health tech.

It’s easy to see why lawmakers rally around research funding. Rather than addressing pricing, insurance reform and structural inequities, investment in science is unlikely to upset voters. But science alone is not enough. Research is only valuable if it can be used to help the people on whom it’s based.

The NIH is essential in establishing scientific priorities and sustaining breakthroughs. But downstream of pure research, insurance overrules medicine and science. If we celebrate new technologies from the NIH without ensuring their adequate distribution, we risk widening the disparities medical innovation aims to solve. Funding more research may eventually lower long-term disease burdens, but people are suffering now. They do not need the promise of eventual lower-cost care. They need new technologies at an affordable price. 

As a world-renowned research institution, Stanford relies on NIH investment, but we also bear responsibility for examining how publicly funded science benefits the public as well as the private sector. Taxpayers fund the SDP. Patients participate in trials. Researchers build careers on federally supported work. Scientific progress should improve population health, not only the health of those who can afford premium insurance plans.

Bipartisan consensus around discovery should not eclipse the harder conversation about distribution. If our goal is not only better science but fairer health outcomes, then access must be treated as seriously as innovation.

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