Health

A Patient’s Three-Year Wait Exposes Complexities in the U.S. Organ Transplant System

When a severe car crash in May 2022 destroyed Katherine Screws’ small intestine just a month after her wedding, the Phoenix resident was told by her hospital to expect a wait of roughly six months for a replacement organ. Instead, she spent three years dependent on intravenous nutrition, too ill to leave her bed or return to her engineering career.

The timeline she was given proved drastically mistaken. Her wait ended only after a rare direct encounter with an organ procurement organization revealed how widely medical centers differ in accepting or rejecting available organs, prompting her to register at a second facility across the country where she received a transplant within weeks.

Screws’ experience highlights the opaque nature of the U.S. transplant system, where patients often navigate critical decisions without adequate guidance on whether to register with multiple centers, how to evaluate organ offers, or where to seek specialized treatment. While the nation set a record with just over 49,000 transplants performed last year, approximately 100,000 people remain on waiting lists, primarily for kidneys. At the same time, roughly one in five donated organs goes unused, frequently because a suitable recipient cannot be located quickly enough.

Disparities between medical centers are well-documented. A major study on kidney transplants, the most common procedure, demonstrated about a 16-fold variation in how quickly a patient receives a transplant depending on the center. Experts attribute these differences to varying surgeon experience with complex anatomical challenges, such as extra blood vessels, and differing institutional risk tolerance regarding older or sicker donors whose organs might still offer a better quality of life than continued dialysis.

Procedures like intestine transplants are rarer and biologically more complex. Only 88 people in the United States received a new intestine last year. Lisa Stocks of California-based OneLegacy, one of the nation’s largest organ procurement organizations, noted that intestine transplants are declined so often that the process can become demoralizing for recovery teams.

Organ procurement organizations serve as the bridge between deceased donors and transplant hospitals, managing automated matching systems that generate priority lists based on biological characteristics and specific surgeon requirements. If a transplant team declines an offer due to technical preferences or risk concerns, the organ is passed to the next hospital on the list. A study published last year revealed that kidney patients who died on waiting lists had a median of 25 organ offers declined by their transplant teams—organs that were ultimately utilized elsewhere.

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Institutional caution is often driven by regulatory grading systems. Hospitals and procurement organizations alike face federal accountability metrics, with regulators grading centers on patient outcomes and procurement organizations evaluated on the volume of organs successfully transplanted. Some procurement organizations are currently involved in lawsuits seeking to block proposed closures under these grading rules, arguing that final acceptance decisions rest entirely with hospital surgeons. Meanwhile, Medicare is running a pilot project to test financial incentives aimed at reducing the number of wasted kidney organs.

In late 2024, frustrated by her prolonged illness, Screws and her family began sending emotional letters to organ procurement organizations across the country, asking whether matching programs were properly prioritizing small intestines. The outreach caught the attention of OneLegacy staff, who subsequently reviewed their records and discovered that Screws’ local team had rejected nine offers for her during 2024.

Stocks engaged in candid conversations with Screws about the technical reasons behind those rejections and introduced her to a public online database run by the Scientific Registry of Transplant Recipients. This tool allowed Screws to evaluate other medical centers with more active intestine programs.

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In June 2025, just weeks after registering at Georgetown University Hospital in Washington, Screws received a new intestine sourced from a donor in Chicago. Dr. Cal Matsumoto, who performed the procedure at Georgetown, noted that the donor organ was larger than average but fit successfully, demonstrating the subjective nature of surgical acceptance criteria.

UCLA Health, Screws’ original medical provider, declined to comment on specific patient cases citing privacy regulations, but stated that it follows federal transplant guidelines and continuously strives to enhance its processes.

Reflecting on her journey, Screws emphasized that her frustration was directed at the lack of centralized, understandable information rather than her physicians. She noted that many patients assume waiting lists operate on a predictable timeline, unaware of the heavy subjectivity involved in organ selection and placement.

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