First Posted on his blog 9/13/2013
Medicine is a business. For patients with terminal illness and chronic debilitating disease, hope often trumps good sense. Unfortunately, many savvy businessmen capitalize on those who are suffering in order to make a profit. Genomics and stem cell research holds much promise for the future. I believe that many once incurable diseases will be not only treated but cured through breakthroughs directly related to stem cell research. However, much controversy surrounds the use of stem cells–ethical, legal and regulatory. Moreover, the FDA and other agencies have well developed protocols for evaluating new therapies–most are designed to protect patients who are enrolled in clinical trials to evaluate novel therapies.
Although stem cell research and potential stem cell therapies hold great promise, new non regulated stem cell clinics are cropping up all over the world. “Stem cell tourism” is now a booming market. As reported in the New York Times, desperate patients travel to Mexico, Asia and Latin America in an effort to provide themselves with hope in the face of terminal illnesses. Often, these clinic visits are cash only and require thousands of dollars for unproven therapies. Even more disturbing is the fact that these clinics do not share or publish any results of their trials–no one really knows if there is any evidence to support the techniques or protocols that are being employed. The clinics do inform patients that the stem cell treatments that they offer are “experimental” and further claim that the trials are overseen by an Institutional Review Board(IRB). However, close inspection of the IRB review and monitoring of trials shows a complete lack of oversight and no resemblance to the type of monitoring required in the US and other westernized countries.
Patients need hope. Hope is essential for recovery. However, trading profit for hope (without substance) is shameful. These “for profit” stem cell therapy centers are unregulated–there is no oversight to standardize what is injected and how follow up is arranged. If a therapy is successful, how will it be shared with the world? Currently, most of the stem cell “cocktails” provided by these centers are top secret–I suspect if a real therapy is ever stumbled upon, it will remain proprietary.
So, where does this leave us? Are stem cells and stem cell research a viable option? What can we do to prevent “opportunistic” marketing of unproven therapies abroad?
Putting aside the ethical side of the stem cell research debate (that is not what this blog is about), the scientific community must continue to push the limits of our knowledge in order to provide new therapies and cure chronic disease. Stem cells represent one possible avenue. However, we must, as a global medical community, begin to collaborate and share findings. When it comes to patients and human suffering we must put profit aside. Moreover, we must attempt to regulate non US research therapy centers–allowing patients to continue to pay out of pocket for unproven therapies just doesn’t seem right. If we are able to systematically evaluate new stem cell therapies and informed patients decide to pay out of pocket for the opportunity to be enrolled in a trial then I believe that progress can be made. However, research and therapy formulations must be made transparent for all to share and benefit from. Those that are selling snake oil in exchange for hope must be called out and shut down. Patients with life threatening medical conditions deserve better. Lets give them hope–but let’s set realistic expectations. We must provide hope for a cure. But, we must be vigilant that others do not prey on those without hope and, in the words of Mark Knopfler and Dire Straits, provide “money for nothing”.