Patients are the Heroes at the CIRM Alpha Stem Cell Clinics Symposium

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UCSD’s Catriona Jamieson and patient advocate Sandra Dillon at the CIRM Alpha Clinic Network Symposium

Sometimes, when you take a moment to stand back and look at what you have accomplished, you can surprise yourself at how far you have come, and how much you have done in a short space of time.

Take the CIRM Alpha Stem Cell Clinics Network for example. In the 18 months since our Board invested $24 million to kick start the first three Alpha Clinics the Network has signed up 21 clinical trials. That’s no small achievement. But as far as the Alpha Clinics Network team is concerned, that’s just a start.

Alpha clinic table

Last week UC San Diego hosted the Second Annual CIRM Alpha Stem Cell Clinics Network Symposium. The gathering of scientists, medical staff and patient advocates spent a little time talking about the past, about what has been achieved so far, but most of the time was devoted to looking to the future, planning where they want to go and how they are going to get there.

The Network’s goal is to now dramatically increase the number of high quality stem cell clinical trials it is running, to make it even easier for companies and researchers looking for a site to carry out their trial, and to make it even easier for patients looking to sign up for one.

Alpha clinic panel

Panel at symposium: L to R: David Higgins, CIRM Board; David Parry, GSK; Catriona Jamieson, UCSD: John Zaia, City of Hope; John Adams, UCLA

For companies, the lure of having three Alpha Clinics (UC San Diego, City of Hope and the combined team of UCLA/UC Irvine) packed with skilled, experienced staff that specialize in delivering stem cell therapies is a big draw. (By the way, if you know anyone looking for funding for a clinical trial send them here).

The Alpha Clinic teams not only know how to deliver the therapies, they also know how to deliver patients. They spend a lot of time working with patients and patient advocates on the best ways to recruit people for trials, and the best way to design those trials so that they are as easy as possible for patients to take part in.

This attention to making it as good an experience for patients as possible starts from the very first time that a patient calls the clinics to find out if they are eligible for a trial. If there is no trial that is appropriate for that particular patient, the staff try to find an alternative trial at another location that might work.

Making sure it’s a good fit

If the Network does have a trial that meets the needs of the patient, then they begin the conversation to find out if the patient is eligible to apply. The goal of this part of the process is not simply to try and fill up available slots but to make sure that the patient is both a good match for the proposed therapy and that they also completely understand what’s involved in getting that therapy. For example, they need to understand if the trial involves staying overnight or several nights in the hospital, or if there are things they need to do ahead of time to prepare.

For the clinics themselves, one of the biggest challenges is insurance coverage. While the trial itself may be free, the patient may need to have some tests ahead of the treatment, to make sure they don’t have any underlying problems that could put their health at risk. The clinics need to know if the patient’s insurance will cover the cost of those tests and if they don’t what their options are. For a rare disease, where it’s challenging to find enough patients to produce meaningful results, these kinds of problems can jeopardize the whole trial.

The Alpha Clinics Network is working hard to develop answers to all of those problems, to create systems that make it as easy as possible to get a clinical trial up and running, and to recruit and keep patients in that trial.

Challenges to overcome

Part of the challenge is that many of these trials are for first-in-human therapies, meaning no one has ever tried this in a person before. That means the doctors, nurses and all the support staff in these clinics need to be specially trained in dealing with an entirely new way of treating people, with an entirely new class of therapies. And this isn’t just about technical skills. They also need to be good at communication, helping the patients understand everything that is happening or about to happen.

In a state like California, one of the most diverse places on earth, that’s no easy challenge. According to a UCLA study there are more than 220 languages spoken in LA County alone. Coping with that level of linguistic, cultural, and religious diversity is a challenge that the Alpha Clinics are working hard to meet.

Listening to patients

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Patient advocates were also an important voice at the symposium, talking about their experiences in clinical trials and how they have helped change their lives, and how they have, in some cases, saved their lives. But they also had some thoughts on how the researchers can do an even better job. That is the subject for a future blog.

While everyone acknowledged the challenges the CIRM Alpha Clinics face, they also celebrated what they have accomplished so far, and looked forward to the future. And the symposium was a chance to remind all of us that the reason we are in this is to help patients battling deadly diseases and disorders. So it was fitting that Thomas Kipps, the Deputy Director of Research at the UCSD Moore’s Cancer Center, took the opportunity to thank those who are not just the focus of this work, but also the heroes.

Kipps

Thomas Kipps: Photo courtesy Patient Power

“Clinical trials involve a very important skill set. You have to first and foremost put the patient first in any clinical trial. I think we cannot ignore the fact that these are human beings that are brave souls that have gone forward. These are the heroes who are going out and forging new territory.”

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