Grotesque side effects from unproven stem cell therapies are more common than we realized, reports a team of researchers led by UConn Health in Annals of Neurology on July 29. And despite the dangers, many neurologists feel ill-equipped to warn and educate their patients.
People who have suffered debilitating brain or spinal cord damage, or have been diagnosed with progressive neurological disease, are often frustrated by the lack of treatments available to help them. That frustration can make them easy targets for clinics that inject patients with stem cells. But most of these clinics are operating outside of the Food and Drug Administrations jurisdiction, and the treatments they offer are unproven. And pricey.
Its an unethical industry. They use fancy websites promising cures left and right, but which are nothing of the sort. They steal your money but give nothing in return, says Jaime Imitola, senior author of the paper and director of the comprehensive Multiple Sclerosis Center at UConn Health and the Laboratory of Neural Stem Cells and Functional Neurogenetics at UConn Health and a faculty member at the UConn School of Medicine.
Patients often pay $25,000 to $50,000 in cash for procedures that claim to cure everything from multiple sclerosis to paralysis, but have no evidence to back them up. The clinics, which can operate in the US but are more commonly found in Mexico, China, Russia and other countries with looser health regulations, entice patients to fly out for a week or two of spa-like treatment, physical therapy and injections of stem cells supposedly designed to cure multiple sclerosis, ALS, paralysis, or whatever other neurological impairment the person suffers from. The physical therapy often makes the patient feel better for a week or two. But sadly, there are no treatments that can reliably improve most of these diseases, and definitely none using stem cells. And anecdotal stories have begun popping up of patients who have had these stem cell procedures and then developed horrifying side effects, from hepatitis to nerve pain to bizarre spinal cord tumors.
In an effort to better understand the impact of this stem cell tourism, as the field calls it, a team of researchers lead by UConn Health conducted a nationwide survey of academic neurologists experiences in stem cell tourism complications. The survey also investigated the level of physician preparation to counsel and educate patients.
Imitola led the study with colleagues from the Ohio States Neuroscience Research Institute. The researchers know as well as anyone how far medicine is from any kind of stem cell treatment for these neurological diseases. And they have had patients come to them asking for permissionthe clinics call it clearanceto get the stem cell injection treatments.
The results of the survey show that bad outcomes from stem cell tourism are much more common than anyone had realized. Of the neurologists who responded to the survey, one in four had had a patient with complications related to stem cell therapy. Patients who had suffered infections, strokes, spinal tumors, seizures, and even deaths were all reported. And 73% of neurologists responding to the survey said they felt that having more educational tools to discuss the issue with patients would be helpful.
Stem cells hold the promise for patients, not just the desperate ones with terminal illnesses but also those who are looking for a natural solution where modern medicine has failed them. Anecdotally, I have spent many hours talking to patients about powerful new immunotherapies to prevent relapses of multiple sclerosis or neuromyelitis optica; but, when they ask if these therapies will help them walk or see again, I have to admit they wont, says Michael Levy, research director for the division of neuroimmunology and neuroinfectious disease at Massachusetts General Hospital, Harvard Medical School, who was not involved in the study.
Levy says the paper by Imitola and his colleagues found that many neurologists are faced with these questions but most have no experience with stem cell therapies.
Patients as well as physicians are constantly looking for ways to maintain hope. So if a patient asks about it, the doctor may say I encourage them to look into it, says Dr. Alfredo Quinones-Hinojosa, the William J. and Charles H. Mayo Professor and chair of neurologic surgery at the Mayo Clinic, who was also not involved in the study. We need to be careful how we as physicians find a balance between giving patients hope and maintaining scientific accuracy to the highest standards.
It is really shocking that only 28% of board-certified neurologists feel completely prepared to discuss this important issue with their patients, Imitola says. The International Society of Stem Cell Research has information available on their website, but Imitola and his colleagues say there is a need for regular educational sessions on stem cell tourism to be held at international and national neurology meetings as well.
The ultimate goal of this research is to be able to determine the extent of the complications and the readiness of neurologists to counsel patients. All of us are interested in bringing real stem cells to the clinic, but this process is arduous and requires a great level of rigor and reproducibility, Imitola said.
The team also plans on starting a national patient registry, where physicians can report complications from stem cell tourism procedures so that the medical world and regulators can get a better sense of the extent of the problem, and have more data with which to educate patients. These findings are more pressing now, when some stem cell clinics are even promoting cures for COVID-19 with stem cells. To help neurologists explain the risks, the researchers have prepared an evidence-based patient friendly handout summarizing the findings and have translated it into multiple languages. The handouts and additional information can be accessed at: https://www.imitolab.org/stem-cell-tourism-in-neurology.html.
Follow this link:
- Half of Ontario's medical schools are now named after wealthy donors - The Conversation CA - December 17th, 2020
- Yes, It's Possible To Have a Baby In Medical School Here's How - Pager Publications, Inc. - December 17th, 2020
- California's medical school diversity "nowhere near where it needs to be" - State of Reform - State of Reform - December 17th, 2020
- Medical School Keeps Students on Track By Switching to Virtual and Back - The Roanoke Star - December 17th, 2020
- UT Health Austin and Dell Medical School among first facilities in Texas to receive COVID-19 vaccine - Community Impact Newspaper - December 17th, 2020
- Medical schools see spike in students inspired to apply by the pandemic - KBJR 6 - December 17th, 2020
- How to make the most of holiday time off as a medical student - American Medical Association - December 17th, 2020
- UT Austin's Dell Medical School Is The First Institution In Central Texas Receiving Shipment Of COVID-19 Vaccine - KUT - December 17th, 2020
- Degrees of Protection | Harvard Medical School - Harvard Medical School - December 17th, 2020
- The Pandemic Thrusts Telepsychiatry to the Fore | NYU Langone News - NYU Langone Health - December 17th, 2020
- Two-phase Infection | Harvard Medical School - Harvard Medical School - December 17th, 2020
- Texas A&M To Grow Medical Education In Round Rock, Surrounding Area - Texas A&M University Today - December 17th, 2020
- Pitt cardiologist sues school after backlash to his article on affirmative action - TribLIVE - December 17th, 2020
- At a Crossroads: Medicine and the Movement - Columbia University Irving Medical Center - December 17th, 2020
- Jameson's term extended as head of Penn Health System and Perelman School of Medicine - Penn Today - December 17th, 2020
- Touro University Nevada's College of Osteopathic Medicine Class of 2021 Achieves the Highest COMLEX Exam Pass Rate in the Country - PRNewswire - December 17th, 2020
- Hear what the experts from Houston Fights COVID have to say about a new vaccine - KTRK-TV - November 30th, 2020
- Medical Education Research and Innovation Conference set for Dec. 8 - The South End - November 30th, 2020
- 2 Corning-area natives experience COVID-19 pandemic battle on the frontlines - Star-Gazette - November 30th, 2020
- Three Yalies honored for their impact on and beyond Yale with 2020 Yale-Jefferson Awards | Yale Alumni - Yale News - November 30th, 2020
- Medical Education Market Will Hit Big Revenues In Future | Zimmer Biomet Institute, Medical Training College, Harvard Medical School - Murphy's Hockey... - November 30th, 2020
- Immelman, Griebie have mutual admiration for each other - CSB/SJU - November 30th, 2020
- Lobe Sciences Announces Launch of Preclinical Study in Collaboration with the University of Miami Miller School of Medicine - Investing News Network - November 30th, 2020
- Physicians' Role in Addressing Racism in-Training, the online peer-reviewed publication for medical students - Pager Publications, Inc. - November 30th, 2020
- So You Traveled Over Thanksgiving. Now What? : Coronavirus Updates - NPR - November 30th, 2020
- Safely celebrating the holidays during a pandemic - KHOU.com - November 30th, 2020
- 2020 AAAS Fellows approved by the AAAS Council - Science Magazine - November 30th, 2020
- 5 ways the pandemic may transform medical education - American Medical Association - October 8th, 2020
- Trump doctor Conley degree from Philadelphia College of Osteopathic Medicine: What it means - On top of Philly news - Billy Penn - October 8th, 2020
- Students Share Medical School Details You Won't Find Anywhere Else | University of Michigan - Michigan Medicine - October 8th, 2020
- In a First, New England Journal of Medicine Joins Never-Trumpers - The New York Times - October 8th, 2020
- Brown University Medical School Dean to Lead Second Session of Five-Part Virtual Future of Medicine Summit : SF STAT! - South Florida Hospital News - October 8th, 2020
- Human brain dissected live in front of medical school students - The Argus - October 8th, 2020
- After 40 years in medicine, here's what a Maine addiction expert has learned about alcohol, opioids and public health - Bangor Daily News - October 8th, 2020
- Trumps Lying Personal Physician And Dr. Umar Johnson Went To The Same Med School - News One - October 8th, 2020
- Study Finds Older Adults Using Cannabis to Treat Common Health Conditions - UC San Diego Health - October 8th, 2020
- U of M Medical School Researchers Found Traces Of COVID-19 On Beaches - FOX 21 Online - October 8th, 2020
- My Body, Whose Choice? - The Regulatory Review - October 8th, 2020
- American Sign Language and the Power of Communication - Pager Publications, Inc. - October 8th, 2020
- Experimental COVID-19 Treatment Given To President Trump Part of Study At U of M Medical School - FOX 21 Online - October 8th, 2020
- Trump Returns Home After Downplaying Disease, but Doctor Says He Isnt Out of the Woods - The New York Times - October 8th, 2020
- Texas doctor, 28, dies of Covid: 'She wore the same mask for weeks, if not months' - The Guardian - October 8th, 2020
- Nobel awarded to Charles Rice for hepatitis C discoveries at Washington University School of Medicine Washington University School of Medicine -... - October 8th, 2020
- Warrior M.D. Chat: What to Expect - School of Medicine - Wayne State University - The South End - October 8th, 2020
- Hershey Medical Center: Celebrating 50 years of people helping people - Penn State News - October 8th, 2020
- UMass Medical School-affiliated study finds federal rule will negatively impact immigrant health care - Worcester Business Journal - October 1st, 2020
- Medical school class writes own Hippocratic Oath acknowledging racism, Covid-19 deaths and the killing of Breonna Taylor - CNN - October 1st, 2020
- Just what the doctor ordered - Isaac accepted to med school - Jamaica Gleaner - October 1st, 2020
- These medical students just wrote their own Hippocratic oath. Here's what it says. - The Daily Briefing - October 1st, 2020
- Maryland researchers identify what works to help children avoid obesity - WTOP - October 1st, 2020
- Call It What It Is in-Training, the online peer-reviewed publication for medical students - Pager Publications, Inc. - October 1st, 2020
- Medical Education market seeking excellent growth | Stanford University School of Medicine, GE Healthcare Institute, Zimmer Biomet Institute, Olympus... - October 1st, 2020
- Political newcomer Cameron Webb looks beyond party in 5th District bid - Fauquier Times - October 1st, 2020
- Irregular periods linked to a greater risk of an early death, study suggests - CNN - October 1st, 2020
- This biologist helped trace SARS to bats. Now, he's working to uncover the origins of COVID-19 - Science Magazine - October 1st, 2020
- How This NYC Bill Would Address Harassment And Discrimination In Healthcare - Forbes - October 1st, 2020
- To deal with the A levels fiasco fallout, medical schools need a cash injection - Times Higher Education (THE) - September 8th, 2020
- Mercer University Breaks Ground on New Medical School Campus in Columbus - Mercer News - September 8th, 2020
- COVID-19-induced 'sophomore medical student syndrome' | TheHill - The Hill - September 8th, 2020
- New crop of medical students are headed to the lab - Stanford Medical Center Report - September 8th, 2020
- U of M Medical School researchers look to beach water for COVID community infection - KARE11.com - September 8th, 2020
- When's the right time to choose a medical specialty? - American Medical Association - September 8th, 2020
- Gujarat medical school to carry out autopsies of COVID-19 victims to study effects on body - Republic World - Republic World - September 8th, 2020
- Durham student with dreams of med school wins $100,000 in lottery game - WRAL.com - September 8th, 2020
- How to help medical students keep tabs on their mental health - American Medical Association - September 8th, 2020
- Industry VoicesCould less emphasis on the MCAT bring more diversity to medicine? - FierceHealthcare - September 8th, 2020
- Medical exams postponed amid strike and resurgent virus - University World News - September 8th, 2020
- TCOM creates office of student success - fortworthbusiness.com - September 8th, 2020
- COVID-19 Disproportionately Impacting Those With Developmental Disabilities - Disability Scoop - September 8th, 2020
- Med Students 'Feel Very Behind' Because of COVID-Induced Disruptions in Training - The Southern Maryland Chronicle - September 8th, 2020
- A bill would spend $1 billion on diversifying medical schools to close the racial health gap - NBC News - August 10th, 2020
- Pandemic acts as dress rehearsal for new medical school curriculum - Washington University School of Medicine in St. Louis - August 10th, 2020
- The Unnamed Hero - Pager Publications, Inc. - August 10th, 2020
- Testing is the key to a successful fall reopening on campuses (opinion) - Inside Higher Ed - August 10th, 2020
- TUNE IN: Alexandria Addressing Back-to-School Worries in Virtual Town Hall - The Zebra - August 10th, 2020
- Community Healthcare honored during National Health Center Week - Times Record News - August 10th, 2020
- When Things Arent OK With a Childs Mental Health - The New York Times - August 10th, 2020
- Making sure patients, physicians know about the advances in treating female cancers - Norton Healthcare - August 10th, 2020
- 'We Are Here to Help Them' | Harvard Medical School - Harvard Medical School - August 10th, 2020
- In the face of challenges posed by a pandemic and racism, the White Coat Ceremony underscores the importance of our shared humanity - AAMC - August 10th, 2020