HSCT Myths
AIMS interviewed Dr Ruiz in association with the MS Warrior Podcast and Nic Haste to ask for his response to various myths being told to MS patients about traveling abroad for HSCT and specifically in Mexico.
We will be providing a transcript of this podcast so you can dip in and out of it to find the info you want, but in the meantime, here is the full list of questions!
We first spoke to Dr Ruiz about the fact that he is a Fellow of the Royal College of Physicians (both in Glasgow and London). This is an accolade bestowed on only the very best doctors, which should indicate his credentials.
We then asked him about some of the misapprehensions about HSCT in Mexico, along with some questions about the process.
• “It’s not proper chemotherapy in Mexico - it’s HSCT-lite.” What is the amount of chemo used in Mexico and how does that compare to other centres? Why do you do it that way?
• “The hospitals in Mexico are filthy - they have dirt floors”
• “Rituximab is less effective than rATG”
• “Non-Myelo isn’t as effective as Myeloablative”
• “You don’t even know that they’re really giving you stem cells”
• “HSCT in Mexico isn’t regulated”
• “The cells need to be frozen but Mexico don’t do that”
• “They don’t follow up with all the patients”
• “Mexico will treat anyone if they have the money. There is no screening.”
• “There is no peer reviewed data from Mexico”
• What are the chances of getting worse after HSCT. Is it reasonable to assume you’ll get worse before you get better - how long can you expect this to last?
• “HSCT only works when there are active lesions”
• “Non myeloablative is a waste of time and money. Only myeloablative HSCT is worthwhile”
• “Over 50’s can’t have HSCT”
• Have you treated an neurologists with MS or autoimmune disease? Where from?
• Are the Mexico clinics both FACT accredited? (FACT is now synonymous with JACIE)
• People are worried about aftercare and needing Rituximab follow ups
• “The bloods of people returning from Mexico are normal, which shows that they haven’t had the treatment at all.”
• Washouts and how they might affect HSCT… especially IRT treatments like Cladribine which stay in your system for such a long time. Does this affect the treatment or recovery?
• A lot of people wish to avoid Cyclophosphamide due to infertility and cancer risks. What can Dr Ruiz say about these risks? What is the actual mortality rate, INCLUDING a 10 year followup (since Cyclophosphamide increases cancer risk for 9 years). (numbers like 2/1000 have been quoted, but these do NOT include follow up.)
• What does Dr Ruiz think about using proteasome inhibitors, like Bortezomib, in order to kill memory B cells? Would this allow him to reduce or eliminate the need for Cyclophospamide?
• Some people develop a new autoimmune disease after their immune system rebounds from Rituximab (plenty of publications on pubmed). Mayo Clinic neuroimmunology partly attributes this rebound effect to BAFF (B cell activating factor). The killing of regulatory B and T cells (Breg, Treg) may also contribute to this. I know a patient who developed debilitating pancreatitis after HSCT. What are Dr Ruiz's thoughts on these rebound effects?
• Does Dr Ruiz perform HSCT for MS only, or does he also do it for other diseases? (Dr Burt has done it for 3 patients with Autoimmune Autonomic Ganglionopathy, as well as other autoimmune neurological conditions, such as Myasthenia Gravis, etc, with mixed results. For instance, the 1st AAG teenage patient got better, for the 2nd there was no change, and the 3rd actually got worse and turned progressive).