NIH wanted to make cancer research more diverse. The effort turned out to be a costly failure

Government researchers hoped to attract a more diverse group of patients for clinical research by paying for the travel expenses of cancer patients seeking to volunteer for trials. It didn’t work.

Patients don’t pay for the care they receive as part of clinical trials run by the National Institutes of Health. But patients, and often their caregivers, incur other costs such as travel, food and lodging, child care, and absences from work.

The government often pays for travel and lodging expenses, too. The National Cancer Institute, the biggest institute among the National Institutes of Health, has for a long time even covered travel costs for caregivers who accompany patients in clinical trials.

But patients and caregivers must pay the initial expense of traveling to Bethesda, Md., to see whether they’re eligible for NCI trials. Researchers at NCI thought those so-called first visit costs might discourage low-income patients from volunteering for trials, excluding the people of color who are often most affected by the diseases that drugs treat.

The NCI’s Center for Cancer Research piloted a program of paying the travel costs for screening prospective research volunteers and, when needed, their caregivers, according to an internal NCI email obtained by STAT. NCI discontinued the pilot after one year, according to an NCI spokesperson.

It’s not clear what the goals or outcomes of the NCI pilot were or how long the pilot was supposed to run. However, the NCI spokesperson said the pilot was abandoned because it was expensive and didn’t work.

“An analysis of data showed that the program did not result in an increase in the diversity of enrollees,” the spokesperson said. “Additionally, during that time period, NCI CCR experienced a 45% increase in travel costs, which was not sustainable.”

The extra expense coincided with budget cuts. Congress cut NCI funding for the 2024 fiscal year by $96 million out of a $7.22 billion budget. The NCI email says the pilot was ended “in the face of fiscal realities.”

Drugs must be tested on a representative sample of people to know they work for everyone. Both NIH and industry researchers have struggled to enroll enough people of color in trials. NIH-funded trials often enroll fewer Black patients and other underrepresented racial groups than they plan to, according to a study.

Congress in 2022 passed a law requiring companies to give the Food & Drug Administration their plans for diversifying clinical trials. The agency is four months late with guidelines that companies need to comply with that requirement. However, FDA had already provided companies guidance on diversifying trials before Congress passed that law. That guidance said companies may help patients with travel expenses, but it didn’t specifically recommend paying for caregiver travel. The guidance doesn’t mention clinical trial screening visits.