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Patients Seek Help, Money From California Institute for Regenerative Medicine

Posted on: Friday, 30 September 2005, 18:00 CDT

By Steve Johnson, San Jose Mercury News, Calif.

Sep. 30--Californians suffering from a wide array of diseases already are lobbying for a share of $3 billion the state has earmarked for stem-cell research, even though scientists only this weekend will begin hashing out how to spend the money.

Although it could take at least a decade to develop drugs from stem cells, many people hope the California Institute for Regenerative Medicine -- the agency overseeing the money -- will begin doing research on specific diseases now. Members of the institute's board say they're being blitzed by sick people and advocacy groups wondering which illnesses will be targeted first.

"Everyone is anxious," said board member David Serrano Sewell, a deputy San Francisco city attorney who has multiple sclerosis. "There is high expectation."

Two lawsuits have held up the sale of bonds to finance the effort. But officials with the program hope to begin issuing research grants next year. And they plan to solicit advice from experts on how to do that at the seminar Saturday and Sunday in San Francisco -- the first time the institute will begin considering how to spend the $3 billion that Proposition 71 authorized over the next decade for stem-cell research.

Stem cells are hailed as a potential cure for everything from cancer to rheumatoid arthritis. But despite the fact that 10 of the state program's 29-member board represent people afflicted by various aliments, fears persist that some diseases may get overlooked.

For one thing, it's unclear how many -- if any -- illnesses will be targeted by the initial research grants, since much has to be learned first about the basic properties of stem cells. And not all patient groups that could benefit -- including some that backed the initiative -- have someone on the board specifically touting their interests.

"I do personally worry," said Stephanie Pringle-Fox, executive director of the state chapter of the Lupus Foundation of America, who is one of an estimated 200,000 Californians with that disease. Despite her group's support of the measure, she's afraid "the people who have representation on the board will be able to push their issues to the forefront, whereas those of us who are not heavily involved may not get up on the list."

Joe Tayag, a health advocate with the Greenlining Institute who has nerve and lung problems, is especially uneasy that the board has only a handful of non-white members, since sickle cell anemia and some other ailments disproportionately strike minority groups.

"Who will uphold the needs of the under-served when communities of color are not being allowed at the decision-making table?" the Philippines-born Tayag asked in a Sept. 10 letter to news organizations.

No one involved with the program wants these sorts of anxieties to foster infighting among patient advocacy groups, and members of the stem-cell board insist they'll support developing treatments for as many diseases as possible. Even so, it's likely many of their decisions will hinge on the recommendations of 15 out-of-state scientists picked to advise them.

And that seems appropriate to David Baltimore, a Nobel Prize-winning member of the board and president of the California Institute of Technology, since he maintains scientists are best able to decide which research applications have the most promise.

"I believe that's the kind of question the scientific community has to deal with," Baltimore said. "I think you have to trust them."

Stem cells are the building blocks for every tissue in the body and can be programmed like a blank computer chip to perform a variety of tasks. Many experts say the cells one day could be used for everything from growing new hearts and kidneys to restoring a blind person's sight by regenerating damaged retinas.

Proposition 71, which created the stem-cell program, directs the board to spend $300 million a year on research over the next 10 years. Its passage in November was seen as a potential life saver for hundreds of thousands of people, especially since the federal government has limited studies into embryonic stem cells, believed to have particular promise.

Proponents of the measure claim about half of California's families have someone who suffers or will suffer from a condition that could be treated with stem-cell therapies.

So far, the board has generally conducted its business harmoniously. But tensions surfaced earlier this month when it handed out $12.5 million to help prepare students to do stem-cell research. Board member Jeff Sheehy, who suffers from AIDS, complained that some of the group's scientists seemed dismissive of him and other patient advocates.

"To some extent, I felt we were ignored," Sheehy said. "Right now, our biggest fight is to make sure our voices are heard."

Despite the need to know more about how stem cells work, some experts anticipate that some of the initial grants will focus on specific ailments, since stem-cell studies in those areas already show promise.

Spinal cord injuries are an example. In several studies -- including one announced Sept. 19 by University of California-Irvine researchers -- paralyzed animals have regained motor functions after being injected with neural stem cells.

In addition, University of California-San Francisco doctors regularly transplant bone-marrow stem cells into children to treat cancer, aplastic anemia and thalassemia, among other things. And other research has shown stem cells to be promising in treating diabetes.

Even if just a few diseases initially are studied by the board, it doesn't mean others are being overlooked, said Zach Hall, president of California's stem-cell program. That's because research on one ailment may uncover information about stem cells that can be applied to a variety of illnesses, he said.

Arnold Kriegstein, director of the Institute for Stem Cell and Tissue Biology at UC-San Francisco, also cautioned that because research tends to be slow and unpredictable, "I would hope the public doesn't lose patience."

That may be asking a lot of the thousands of Californians looking to the stem-cell program to cure them and their loved ones, said Joan Samuelson, a board member with Parkinson's disease.

"There is such a sense of urgency," she said. "People are suffering in homes all over the state, every day, right this minute, and many are dying. We need to try to rescue them."

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Source: San Jose Mercury News

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