Could patient advocacy be a key to regenerative medicine?
Maybe it isn't entirely up to the scientists and the investors.
(Photo credit: Julien Tromeur on Unsplash.com)
Readers of this blog know that I closely follow the latest developments in regenerative medicine — cell-based therapies aimed at restoring healthy function in our bodies. And there certainly is a constant stream of news, both in the lab and in the capital markets.
Is the patient anywhere in all this?
At first glance, the answer would appear to be a resounding ‘No.’ We’re certainly not qualified to direct the course of research and the development of new theories. Nor do we, as individuals, have the capital to participate in any meaningful way in the multi-billion dollar investments that are required to sustain the research and, hopefully, one day bring these new therapies on to the market.
All we can do is wait for “them” to get the work done and let us know when there is some product, or therapy, we can acquire and use.
But maybe not.
In a provocative interview recorded here, Bernard Siegel, founder of the Regenerative Medicine Foundation, puts forward the idea that not only is there a role for patient advocacy in this process, but that a number of factors are coalescing to make it both possible and necessary.
“The world of healthspan and longevity is no longer science fiction, and one of the great engines that is going to move the field forward is regenerative medicine,” he says in the interview. “The combination of cell-based therapies with the convergence of technologies that we now have, and the perception that aging is the common factor of so many chronic diseases – it’s all coming together.”
Siegel describes this convergence as a game-changer: “The issues surrounding public acceptance and approval of longevity and healthspan – and identifying the necessary public policy to move this forward globally – is absolutely critical. There’s so much more we can do.”
Where does patient advocacy come in?
“When you think about the term stem cell,” he says in the interview, “the public in general doesn’t understand how stem cells work. But what stem cells represent, it’s almost a consumer movement, where people don’t view stem cells as the science of it, or as a public policy issue, they see it as a personal health issue, impacting everyone. That is very powerful.”
He cites the impact of patient advocacy in other fields, from cancer to HIV and even the polio vaccine. “All of these moved the needle - the regulatory needle and the funding needle.” In the case of stem cells, public advocacy led to tens of billions in research funding to advance regenerative medicine.
But “longevity,” as a cause supported by strong public advocacy, would take things even further. Single advocacy causes — liked cancer and long CIOVID — need to come together around the common denominator issue: aging and longevity.
This idea speaks powerfully to some of the current roadblocks. Most notable, perhaps, is the refusal of the FDA to consider aging as a disease, a refusal which in turn slows down (or blocks altogether) research into the anti-aging potential of existing drugs like metformin. The struggles to get clinical testing for metformin’s anti-aging properties have been well-documented and are still going on. The FDA’s philosophy of single disease/single cause/single remedy is coming under increased criticism (metformin is for diabetes and aging isn’t really a disease, argues the FDA).
But as aging becomes more recognized as the common denominator, argues Siegel, “these communities or people and their support groups and advocacy organizations need to be brought together into the longevity world. Because that is where the power lies – it’s not about expensive lobbyists and our great billionaire friends, it’s going to be about bringing together those groups.”
Another important reason for increased patient advocacy, is to protect the idea of what Siegel calls “distributive justice” in the new landscape. The money quote:
“The advent of artificial intelligence, bioprinting and all of these onrushing technologies, creates a fertile ground to create new medicine and upend the existing system of regulation and funding, and offers a whole array of new policy issues that have to be considered. But how the hell are we going to create this positive future if only a billion people might be able to take advantage of these breakthroughs, and six billion are not? That’s not going to work. This is not an elitist project. It’s not a narcissistic vanity project of a few – this is going to change medicine.
“In the end, cell-based therapies are going to be curative, and represent a huge shift in medicine and human health. We are in uncharted territory, and I am absolutely thrilled and agog at what this convergence of technology means and its implications. But the challenge is going to be how do we apply that to the broader population?”
Read the article in full. It articulates many vital issues that must be addressed, and for me it will provide valuable food for thought for many future posts here.