Will cures be affordable to all?

The Joint Informational Hearing on these issues will be held on Monday, October 31, from 9:30 a.m. to 1:30 p.m. at the Hiram Johnson State Building’s Milton Marks Conference Center Auditorium, located at 455 Golden Gate Avenue in San Francisco.

Suppose, as a result of Proposition 71, some stem-cell cures and therapies are discovered, but you can’t afford them. How would you feel then about California’s big stem-cell adventure?

That’s a question being brought into focus by state Senator Deborah Ortiz, D-Sacramento, at a legislative hearing on October 31. “I think it’s important for us and the patient groups to ask: ‘If a breakthrough occurs, is CIRM guaranteeing that my son will get that?'” Ortiz said, referring to the California Institute for Regenerative Medicine. She’s been disturbed by the response of the stem-cell governing board. “Thus far, it’s been, ‘Oh, that’s not our obligation,'” Ortiz said. “David Baltimore told me at a hearing, ‘That’s not our obligation, to serve the poor in California. It’s a laudable goal, but that’s not our role.'”

Ortiz is not alone in her concern. James Battey, chair of the National Institutes of Health Stem Cell Task Force also worries. “To create a designer stem-cell line … is a complicated and expensive business,” he said. “In my other job as director of the NIH Deafness Institute, I can’t get third-party reimbursement for hearing aids. When you get down to the actual getting the medicine to the patient, there’s an economic side to it that can’t be ignored.”

The senator and others have spotlighted the “intellectual property"—patents—from stem-cell research as a lever to assure Californians’ access to therapies. The Proposition 71 law is entirely silent on access to therapies.

The California Council on Science and Technology reported in August 2005 that “the issue of affordable pricing of treatments and therapies that may emerge from CIRM-funded research must be addressed.” The report, though, asserts that linking the issue to patents may prove counterproductive.

But Marcy Darnovsky, associate director of the Center for Genetics and Society, maintains that “the only way we can assure some sort of mechanism to provide for fair pricing is to do it in the context of arrangements made between the stem-cell institute and their grantees upfront. If we let stem-cell research develop in a way that only wealthy people can afford any treatments, that’s a major betrayal of the promises made during the campaign.”

Some of the patient-advocate groups have expressed concern that Ortiz raising this and related issues might hold back scientific progress. But, as chair of the Senate Health Committee who annually has to consider cuts to Medi-Cal and other health programs, the senator sees it differently. “Those who understand the big picture have an obligation to be honest, even with our patient-advocate groups,” she said. “You know, it can’t be the same old, same old politics, because we lose.”