Jeff Sheehy, AIDS Research Institute

I need to remark on something . . . HIV/AIDS has not really focussed on stem cells. i want to say that what Bernie Siegel and Bob Klein are doing here is getting us out of our individual silos of specific diseases and into the playing field.

I've become friends with all these people who represent a whole collection of conditions and diseases . . . I've always been focused on AIDS and AIDS and AIDS. This is the best.

For Danny . . . we in CA won, but that's not the end. We do feel that we own the stem cell space. 12 of our 29 board members have relationships with patient advocacy groups. Patient advocates are co-chairs of the standing committees. We're funding stem cell research, but are we really moving the science forward in a significant way? Are we getting results.

At a recent meeting, a member who had been following Geron's application for FDA permission gave an eloquent presentation about where the data was missing.

For me it was one of those moments where the scientists seemed to be talking down to us as advocates . . . what we all need to understand is that working as partners with advocates is the most effective way for research to go forward.

We ought to be stopping everything right now in CA and going after those FDA issues. We need to break some NiH patterns here.

Here's a question . . . who is going to get to be in a trial, and who is going to decide?

There's going to be a question of whether placebo trials are needed.

When I think of clinical trials, I think about my friend Jeff Getty, who got a baboon bone marrow transplant that he didn't expect to survive.

I know that if I don't risk my life its over

He felt that participating in risky science is necessary; what he learned through direct experience was that suppressing the immune system drained tthe sea in which hiv swims . . . and his act made it normal for aids patients to get organ transplants. a lot of people are alive because jeff decided to risk his life.

How is it okay for someone else to make a decision for patients?

science is not always linear; the results of Jeff's again were not what anybody expected

i've heard endlessly about the death of Jesse Gelsinger from a gene therapy trial that went wrong

Trials go wrong all the time, but the response is not then to fold up and go home--it's heartbreak.

We can't not do trials because we might fail. we need trials sooner rather than later, and we must be ready for inevitable failures.

I go back to 1996 after Jeff got his transplant . . . within that year, cocktail drugs were introduced and dying aids patients were literally rising from their beds.