Building Momentum for Organ Donation Reform

The American organ donation system is grossly inefficient, failing to recover and transplant as many as 28,000 lifesaving organs every year. More than 100,000 Americans are currently waiting for organ transplants, and 33 patients die every day while waiting for an organ.

The problem is a system of unaccountable, government monopoly contractors, called organ procurement organizations (OPOs), with a history of underperformance, obstructionism, and fraud, waste and abuse. OPO failures disproportionately harm patients of color.

OPOs are less likely to respond to donation cases involving patients of color versus white patients, and have been shown to spend less time with these families and to provide less compassionate service. This leads to fewer lifesaving organs available for recipients of color - and the COVID-19 pandemic is only exacerbating these disparities.

Organize is a non-profit patient advocacy group that aims to increase the number of transplantable organs every year. Bloom partnered with Organize in 2020 to investigate the current donation system and create a report, called The Costly Effects of an Outdated Organ Donation System.

To build on the momentum of the organ donation system report, Organize and Bloom teamed up again to create OPOdata.org. The project aimed to build a dashboard to illuminate OPO practices and increase transparency around metrics for quality and access to care. The goal of the project was to demystify information that had not traditionally been easy to find, and to arm stakeholders who could push for urgent reforms and improvements.

The database tool displays performance metrics for OPOs using government datasets to quantify and visualize preventable deaths around the country. The data were collected from the Organ Procurement and Transplantation Network (OPTN) and Centers for Medicaid and Medicare & Medicaid Services (CMS).

The platform offers three primary views of a map of the United States: OPO Performance, States Under Congressional investigation, and Black Procurement Disparities. Each angle offers an alternative way to think of the interconnected flaws throughout the organ donation system. 

The project team also produced Inequities in Organ Procurement Across the Nation, an interactive report that details the factors that result in unequal access to organ donations for patients of color.

By creating a customizable dashboard for researchers, journalists and policymakers to easily access, Organize and Bloom were able to empower policymakers with the information they need to improve the organ donation system. 

Bloom products have been cited by Congressional oversight committees and national press such as Axios. Bipartisan Congressional leaders have joined patients in calling for accelerating reforms to government contractors as an “urgent health equity issue” since COVID damages organs, and failures disproportionately hurt patients of color. The Biden administration has started to advance data-driven reforms, and Congressional investigations continue to build bipartisan support, citing research from Bloom Works supported by Organize and the Federation of American Scientists (FAS).