For stem cell treatments, patients, doctors, scientists, must collaborate – The San Diego Union-Tribune

Stem cell research begins with scientists, passes on to physicians and ends up with patients.

But those roles arent as separate as they seem, said speakers Thursday at a special meeting held by the California Institute for Regenerative Medicine, the states stem cell agency, and UC San Diego.

The agency is beginning a statewide tour to discuss the progress of its treatments through the lengthy research and clinical trial process. One priority is to make sure all those involved understand each others needs, and how they can help.

Speaker David Higgins has multiple roles built into his life. A San Diegan with Parkinsons disease, Higgins sits on CIRMs governing board.

Patient input is heard throughout CIRM, Higgins said, addressing the audience of more than 100 at the Sanford Consortium for Regenerative Medicine on Torrey Pines Mesa.

Patient advocates sit on reviews for grant funding, Higgins said. Nothing ever goes out the door without it being screened through the eyes of a patient advocate.

Patients can now take a much more active role in managing their illness and advocate for others, Higgins said, because doctors now recognize that treating disease is a partnership.

Now were looking at a two-way relationship, Higgins said. I dont know a single physician that Ive ever talked to who doesnt welcome this, Higgins said.

And in the long run, nobody can escape patienthood, said Dr. Catriona Jamieson, an oncologist-researcher at UCSD Moores Cancer Center.

Were all going to be patients, were all going to be health care users, Jamieson said. I dont see the patient term as in any way stigmatizing, because its part of using our health care system.

Making sure these roles are harmonized is important to CIRM, which has about $800 million left of the $3 billion given by California voters in 2004 in Proposition 71.

And while CIRM cant formally lobby on the issue, those who support the agency recognize they need public support if they want more money from taxpayers.

Jamieson said CIRM has helped her research, her UCSD colleagues and patients by grants and funding alpha stem cell clinics, including one at UCSD. These clinics help translate science into patient care, and help scientists and doctors share ideas and resources.

What we know so far is that great medicine requires great science, said Jamieson, who specializes in blood cancers.

Audience member Adrienne Shapiro was there as a patient advocate for sickle cell disease. Shes a carrier of the trait, and her daughter, Marissa Cors, has the disease. CIRM has funded a program to develop a better bone marrow transplant to treat the disease.

Cors said one of her main issues is dealing with the pain sickle cell disease causes her.

The pain medications are really the key at this particular point in the journey, Cors said, hesitating slightly in discussing the course of her disease.

Cors said shes hopeful that the CIRM program helps others.

Im looking for something effective for the community, Cors said.

bradley.fikes@sduniontribune.com

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For stem cell treatments, patients, doctors, scientists, must collaborate - The San Diego Union-Tribune