RARE Daily

Patient Organizations Gave $22 Billion in Grants in Last Five Years

October 26, 2023

Rare Daily Staff

Patient organizations contributed $22.2 billion in grants to support research, patient services, and access to care over the past five years, a reflection of the critical role they play in the U.S. healthcare system, according to a new report.

The report from the IQVIA Institute for Human Data Science, found more than 3,000 nonprofit patient organizations exist in the United States, 1,000 of which were created in the past decade. Of those, nearly 600, or 18 percent, are focused on rare diseases.

The report credits the passage of the 21st Century Cures Act in 2016 in creating a “seismic shift” in the role and contributions that patient organizations make in collaboration with life sciences companies to develop novel therapeutics consistently.

Patient organizations are collaborating with life sciences companies to increase the understanding of disease and patient experience of disease, improve outcomes through the development and optimized use of medicines; and strengthening patient communities through education, advocacy, and innovation. These collaborations between patient organizations and life sciences companies have evolved as the regulatory changes set in motion by the 21st Century Cures Act are expanding the role for patient organizations as partners to life sciences companies who are looking to better incorporate patient views in drug development.

“In addition to funding research in collaboration with life sciences companies, a growing number of patient organizations are taking on more complex roles in the healthcare ecosystem, building on their original missions with the intent to advance research and address unmet needs in specific diseases,” said Murray Aitken, executive director of the IQVIA Institute for Human Data Science. “Patient organizations are becoming the fulcrum for positive change in healthcare by building their own patient registries, inspiring novel trial designs and endpoints in clinical research, and promoting diversity and inclusion in clinical and population research.”

In addition to advocating for patients’ interests and generating funding for scientific research to find cures, a new generation of patient organizations now support patients in complex and sophisticated ways that demonstrate the scientific and service-delivery expertise they have built. As an example, more than 150 registries are now run by patient organizations, of which 62 percent focus on rare diseases, positioning patient organizations as custodians of data for their communities.

Nearly 700 deals – commercial and non-commercial, including research grants – have been publicly announced between patient organizations and life sciences companies over the past 15 years, with an estimated aggregate deal value of $2.4 billion.

About 75 percent of the disclosed deals involve providing research funding, mostly to small and mid-sized life sciences companies and their academic partners, as well as allowing the use of their intellectual property to accelerate discovery-stage and translational research. Many of the multi-stakeholder deals – collaborations involving multiple companies or organizations – focus on discovering and validating disease biomarkers.

Nearly half of all deals between patient organizations and life sciences companies over the past decade have focused on neurology, where there are several large patient organizations – including The Michael J. Fox Foundation for Parkinson’s Research, Muscular Dystrophy Association and Alzheimer’s Drug Discovery Foundation – that have been particularly active in funding research.

The report said FDA guidance over the past several years on patient-focused drug development and real-world data has opened new opportunities for patient organizations to play a more significant and collaborative role with life sciences companies in the pursuit of new treatments and cures across all phases of clinical development, including trial design, recruitment, and regulatory submissions.

Over the past five years, the aggregate revenue of patient organizations exceeded $62.5 billion, and the largest 20 percent of patient organizations accounted for 92 percent of this revenue. While overall revenue grew by 26 percent over the period, only the largest patient organizations have seen revenue growth on average since 2016, while numerous smaller patient organizations experienced a contraction in revenue. The impact of the COVID-19 pandemic was seen in 2020 – the most recent year for which financial information was available.

Photo: Murray Aitken, executive director of the IQVIA Institute for Human Data Science



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