WASHINGTON, D.C. – U.S. Reps. Fred Upton (R-MI) and Diana DeGette (D-CO) today released draft legislation that would, among other things, make President Biden’s dream of creating a new federal advanced research agency to cure cancer, Alzheimer’s and other difficult diseases a reality.

Included in the bipartisan legislation that’s now circulating among lawmakers is a provision that would create an Advanced Research Projects Agency for Health, or ARPA-H, and authorize the more than $6.5 billion the White House says it needs to run the agency.

The legislation coincides with a detailed concept paper the White House published Tuesday in Science Magazine outlining their vision for the new research agency. Under the terms of the lawmakers’ proposal, the new ARPA-H would be largely modeled after the military’s Defense Advanced Research Projects Agency, or DARPA, which has been responsible for successfully developing some of the most significant technological advancements of our time, including the Internet, GPS and self-driving cars.  

“The federal government has amazing resources at its disposal,” Upton and DeGette said, “and now is the time to put the full weight of those resources to use to cure some of the world’s most devastating diseases, such as cancer, diabetes, Alzheimer’s and more. Developing and delivering new lifesaving cures is a mission that must unite all of us. The Bidens know, firsthand, the pain and heartache that comes from losing a loved one to an illness, such as cancer. Like us, they’re determined to find new cures and treatments for these difficult diseases and we couldn’t be more excited to be working with them to make this dream come true.”

Like DARPA, ARPA-H would provide some of the nation’s greatest minds access to the federal government’s virtually limitless resources to help shape the future of medicine in the U.S. by making the seemingly impossible, possible.

It wouldn’t be the first time the DARPA model is applied to biomedical research. In fact, it was DARPA that initially funded Moderna’s mRNA vaccine technology when other agencies were skeptical of the approach; an investment that later led to the development of a highly-effective COVID-19 vaccine in record time that’s helped stop the spread of the virus both in the U.S. and abroad.

According to a fact sheet produced by the White House, further developing that mRNA vaccine technology to prevent most cancers is one of the projects ARPA-H could undertake.

Unlike other federally funded biomedical research programs, ARPA-H would be run by a relatively small number of program managers who would be given a much higher degree of autonomy to choose which projects to fund – allowing them to pursue high-risk, high-reward projects that other agencies would likely shy away from.

Upton and DeGette, who have been working with the White House for months to make the new entity a reality, have included the language needed to create it in a broader bill the pair has been working on for over a year to modernize how the U.S. delivers innovative new cures and treatments to patients.

That bill, known as Cures 2.0, seeks to build upon the tremendous success Upton and DeGette had in 2015 with passage of their 21st Century Cures Act, a landmark piece of legislation that has revolutionized how the U.S. researches and develops new cures and treatments for some of the world’s most difficult diseases.

The lawmakers worked closely with then Vice-President Biden to include his Cancer Moonshot Program in the 21^st Century Cures bill that year. After meeting with President Biden in the Oval Office earlier this year, Upton and DeGette decided to include his plan to create a new DARPA-like agency for health in their newest legislation to be introduced in the coming weeks.  

While the 21^st Century Cures Act sought to improve how new drugs and treatments are researched and developed in the U.S., Cures 2.0 seeks to improve how those new treatments and therapies are delivered to patients.

Specifically, the legislation – in addition to creating ARPA-H – would:

• Improve how Medicare covers innovative new health care technologies, making them more available to those who need them.
• Increase diversity in clinical trials to ensure new drugs and treatments are both safe and effective for a greater majority of patients throughout the country.
• Require FDA to expand the collection and use of Real World Evidence to aid in the development of new, patient-focused treatment approaches.
• Provide training and educational programs for caregivers – many of whom are often family members with no prior health care experience – to help improve the quality of care patients are provided at home, between clinical visits.
• Provide patients greater access to more health information to improve their understanding of the illness they face and make them a more integral part of the decision-making process when assessing which course of treatment is best for them.
• Increase access to telehealth services for patients covered under Medicare, Medicaid or the Children’s Health Insurance Program (CHIP) to make these services more accessible to more Americans.

The legislation would also require the secretary of Health and Human Services to conduct a nationwide study to further understand the implications of long COVID, a condition that causes patients to experience a range of symptoms related to COVID-19 for weeks, and even months, after contracting the virus. And it calls on the secretary to develop a nationwide testing and vaccine distribution strategy to be used in future pandemics.

A copy of the full Cures 2.0 discussion draft circulating now among lawmakers is available here.

A section-by-section summary of the bill is available here.

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