I have been to a lot of stem cell conferences over the years and there’s one recent trend I really like: the growing importance and frequency of the role played by patient advocates.
There was a time, not so long ago, when having a patient advocate speak at a scientific conference was almost considered a novelty. But more and more it’s being seen for what it is, an essential item on the agenda. After all, they are the reason everyone at that conference is working. It’s all about the patients.
Kicking off the @CIRMnews Alpha #StemCell Clinics Symposium @UCLA. Great line-up of speakers including: Drs. Antoni Ribas, Mehrdad Abedi, Karen Aboody, John Zaia, Catriona Jamieson & more! @UCLAstemcell #CIRMSymposium pic.twitter.com/T9pndrDY7W
— Neil Littman (@njlittman) April 19, 2018
That message was front and center at the 3rd Annual CIRM Alpha Stem Cell Clinics Network Symposium at UCLA last week. The theme of the symposium was the Delivery of Stem Cell Therapeutics to Patients. There were several fascinating scientific presentations, highlighting the progress being made in stem cell research, but it was the voices of the patient advocates that were loudest and most powerful.
First a little background. The CIRM Alpha Stem Cell Clinics Network consists of six major medical centers – UCLA/UC Irvine (joint hosts of this conference), UC San Diego, City of Hope, UC San Francisco and UC Davis. The Network was established with the goal of accelerating the development and delivery of high-quality stem cell clinical trials to patients. This meeting brought together clinical investigators, scientists, patients, patient advocates, and the public in a thoughtful discussion on how novel stem cell therapies are now a reality.
“Tell me what I need to know, tell me in a way that I can understand, and tell me again and again.” – Patient advocate Gianna McMillan on what research subjects in clinical trials need from scientists and researchers #CIRMSymposium pic.twitter.com/ky2bMGjUz4
— UCLA Broad Stem Cell (@UCLAstemcell) April 19, 2018
It was definitely thoughtful. Gianna McMillan, the Co-Founder and Executive Director of “We Can, Pediatric Brain Tumor Network” set the tone with her talk titled, “Tell Me What I Need to Know”. At age 5 her son was diagnosed with a brain tumor, sending her life into a tailspin. The lessons she learned from that experience – happily her son is now a healthy young man – drive her determination to help others cope with similar situations.
Calling herself an “in the trenches patient advocate champion” she says:
“In the old days doctors made decisions on behalf of the patients who meekly and gratefully did what they were told. It’s very different today. Patients are better informed and want to be partners in the treatment they get. But yet this is not an equal partnership, because subjects (patients) are always at a disadvantage.”
She said patients often don’t speak the language of the disease or understand the scientific jargon doctors use when they talk about it. At the same time patients are wrestling with overwhelming emotions such as fear and anxiety because their lives have been completely overturned.
Yet she says a meaningful partnership is possible as long as doctors keep three basic questions in mind when dealing with people who are getting a new diagnosis of a life-threatening or life-changing condition:
- Tell me what I need to know
- Tell me in language I can understand
- Tell me again and again
It’s a simple formula, but one that is so important that it needs to be stated over and over again. “Tell me again. And again. And again.”
David Mitchell, the President and Founder of Patients for Affordable Drugs, tackled another aspect of the patient experience: the price of therapies. He posed the question “What good is a therapy if no one can afford it?”
David’s organization focuses on changing policy at the state and federal level to lower the price of prescription drugs. He pointed out that many other countries charge lower prices for drugs than the US, in part because those countries’ governments negotiate directly with drug companies on pricing.
He says if we want to make changes in this country that benefit patients then patient have to become actively involved in lobbying their government, at both the state and local level, for more balanced prices, and in supporting candidates for public office who support real change in drug-pricing policy.
It’s encouraging to see that just as the field of stem cell research is advancing so too is the prominence of the patient’s voice. The CIRM Alpha Stem Cell Clinics Network is pushing the field forward in exciting ways, and the patients are becoming an increasingly important, and vital part of that. And that is as it should be.