On February 8th, The Subcommittee on Health of the Committee on Energy and Commerce held a hearing, ARPA-H: The Next Frontier of Biomedical Research, including testimony from Dr. Geoffrey Ling, Col. (Ret).

The Suzanne Wright Foundation proposed the establishment of HARPA in 2017 to address pancreatic cancer and other diseases that have not benefitted from the current system. We have been relentless in our efforts ever since. In addition to our advocacy with the last administration, our team worked closely with the Biden campaign throughout 2020 to be sure that HARPA became a priority in a new administration.

We are proud to update you with the news that President Biden has announced his support for an Advanced Research Projects Agency for Health (HARPA). You can read about the President’s announcement in his joint address to Congress on April 28, 2021 HERE. The President has formally proposed $6.5 billion in the FY 2021-2022 budget for the agency and Congress is currently reviewing this proposal.

In order for HARPA to deliver on its potential, it is essential that it is structured like DARPA – operating as an independent agency with urgency, accountability and results. HARPA would leverage discovery-based research at the NIH, Department of Defense and other federal agencies, while catalyzing the private sector to drive meaningful innovation that will save millions of lives and billions of dollars.

Patient advocacy groups and industry leaders across the field have joined our efforts. During these critical months of budget negotiation, we remain focused on establishing HARPA as an agency that can hit the ground running and deliver results for the millions of patients and their families who have been waiting.

You can read a Fast Company article about our Foundation’s contribution to this effort HERE.  As always, thank you for your continued support.

The Biden administration is contemplating creating a research agency to help fund breakthroughs that aren’t economically viable for big health and pharmaceutical companies. Meet HARPA.

Congress passed the 21st Century Cures Act late in 2016. The legislation is designed to help accelerate medical product development and bring innovations and advances to patients who need them faster and more efficiently.

HARPA would deliver on that promise. The Suzanne Wright Foundation will continue to advocate for its creation. The research is sitting on shelves and HARPA will drive innovations that will save lives NOW! #RoadToHARPA

The NIH is in the business of understanding the biology of disease. They do not develop detection tests and they don’t cure disease.

Despite the lack of any progress with pancreatic cancer, they continue to chug along with the same approach. Any other business with the same failing results for 50 years would be forced to shut down or start over.

Lessons from business and years of autism work taught Bob Wright the best way THROUGH is AROUND. The question with this situation was, who else needed a new approach??
Our pancreatic cancer army would never be large enough to influence the change we need. ALS, Alzheimer’s, and glioblastoma have no early detection tests or curative treatments, either.

It was time to Demand A New Approach for the many conditions that do not benefit from the slow, conservative, bureaucratic status quo research model. #RoadToHARPA

Today would have been Suzanne Wright’s 73rd birthday. She died only 9 months after her pancreatic cancer diagnosis.

We lost an incredible advocate, too soon. In her honor, we Demand A New Approach to this deadly disease.

#RoadToHARPA

Like most people diagnosed with pancreatic cancer, Suzanne died within 9 months. 85% of patients are diagnosed at stage 4, making them ineligible for clinical trials. With so few survivors, the army of advocates is tiny. Understandably, families grieve and move on.

There are wonderful organizations focused on research and there is a dedicated stable of scientists and clinicians at top medical institutions across the country. But Bob Wright soon realized outside firepower was required to get the NIH and the federal government to take a bold new approach to the deadliest cancer. The mission needed more allies. #RoadToHARPA

For all the innovation and ingenuity in the medical field, this country performs miserably with disease prevention and early detection. For many reasons, this makes no sense.

In the case of autism, the economic argument for early diagnosis and treatment was clear:  Early intervention makes a lifetime of difference, with reduced burden on the school system and the Medicaid program.  It also leads to better outcomes for individuals. Of course, this is true of many conditions.

Years after the Wrights made that argument for autism support, Suzanne Wright was diagnosed with stage 4 pancreatic cancer. It was shocking to learn there is no reliable detection test and there are no curative treatments for the disease!

Mammograms, PSA tests, and colonoscopies have saved millions of lives, but there is nothing for pancreatic cancer. It has been nearly fifty years since Nixon declared War on Cancer. Shockingly, pancreatic cancer has the same 91% mortality rate it had in 1971.  This is the highest mortality rate of all cancers.

45,000 people die every year, like clockwork, and there is no urgency at the federal research level to address this. Nobody is held accountable for this lack of progress.  Bob Wright soon learned why. There is no army to demand a new approach. #RoadToHARPA

For all the work being done at the grassroots level, the Wrights knew they needed a campaign to drive awareness of autism. Despite skyrocketing prevalence numbers, there was little understanding of the condition and many barriers to progress.

Suzanne took this on as her own challenge. She dedicated herself to driving a global awareness effort to educate the world about the need for acceptance and action. In 2007, with Qatar as a lead sponsor, Suzanne secured the support of the entire United Nations to establish April 2nd as World Autism Awareness Day. Remarkably, she got this done in less than six months – a record at the UN.

Suzanne’s energy and vision were the foundation for Light It Up Blue, a global marketing campaign that marks every April 2nd by getting buildings and landmarks around the world to turn their lights blue for autism.

The Light It Up Blue campaign provided the hope that with enough support behind you, anything can be done. Only a few years later, this would prove to be monumentally harder when Suzanne faced her deadly diagnosis of pancreatic cancer. #RoadToHARPA