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International Alliance of ALS/MND Associations

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Unproven (Off-Label) Treatments

Unproven (Off-Label) Treatments

Background

Given the lack of approved and effective treatments for ALS, people diagnosed with the disease may seek out options that are not offered by their physician. Determining the difference between true and false information regarding ALS treatments can be difficult.

The internet has many websites that promote effective ALS treatments for purchase. Often they are well designed, boast treatments available for multiple diseases and ailments, and provide reassurance through online testimonials from previous clients. In nearly all of these cases, there is no evidence of safety and in all of them; there is no proof of benefit. Furthermore, these treatments are often extremely expensive, capitalizing on desperation and hope, and many people with ALS spend critical life savings or raise funds through family and friends for an opportunity to save their life.

Examples of such treatments include, but are not limited to; stem cell clinics, holistic/naturopathic/homeopathic/traditional medicine, and dietary or physical therapy regimens.

Resources like ALSUntangled (www.alsuntangled.com) can be valuable for balanced, open-access information about such alternative treatments and www.clinicaltrials.gov is a resource for determining whether a particular treatment is being tested in a legitimate clinical trial.

A forthcoming ALSUntangled podcast/review entitled ‘“ten red flags”-things to be wary of in alternative or off-label products’ provides helpful guide to the warning signs to look out for in an advertised potential treatment. Click here for the “ten red flags” article.

Recommendation

The SAC recommends that Alliance members defer all medical advice regarding unapproved/unproven/off-label treatments to an individual’s own clinician. This may be accompanied by objective information about the specific treatment, which may be provided by the SAC. Providing links to resources like ALSUntangled and clinical trials databases like www.clinicaltrials.gov are encouraged. Accompanying information can be especially important in situations where an individual does not have access to an ALS specialist physician and it may assist their clinician in making a medical recommendation. It can also be important to relay that there are thousands of researchers around the world who are dedicated to understanding ALS and finding effective treatments, and if there was anything, anywhere, that actually worked, we would know and we would do everything we could to get it to people living with the disease as soon as possible.

 

International Alliance of ALS/MND Associations
June 2020

 


The original language of communication is English and any translation cannot be guaranteed for accuracy of messaging.

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Advocacy

  • Advocacy Toolkit

  • Camilla Heiberg Freiberg, Muskelsvindfonden, Denmark

    Camilla Heiberg Freiberg, Muskelsvindfonden, Denmark

  • Alfredo Santos, Diagnosed 2013 , ACELA, Colombia

    Alfredo Santos, Diagnosed 2013 , ACELA, Colombia

  • Jason Goodman, Les Turner ALS Foundation, USA

    Jason Goodman, Les Turner ALS Foundation, USA

  • 83

    83

  • Denis Blais, Diagnosed 2015 , ALS Canada

    Denis Blais, Diagnosed 2015 , ALS Canada

  • Joyce Rusinak, Forbes Norris ALS Center, USA

    Joyce Rusinak, Forbes Norris ALS Center, USA

  • Olga Cosentino, Diagnosed 2013,  Asociación ELA Argentina

    Olga Cosentino, Diagnosed 2013, Asociación ELA Argentina

  • Margarita Pizarro, Asociacion ELA Argentina, Diagnosed 2017, Argentina

    Margarita Pizarro, Asociacion ELA Argentina, Diagnosed 2017, Argentina

  • Hanne Stenmose, Muskelsvindfonden, Denmark

    Hanne Stenmose, Muskelsvindfonden, Denmark

  • England-Lee-Millard, UK

    England-Lee-Millard, UK

  • Jose Espinosa, Argentina

    Jose Espinosa, Argentina

  • Shay Rishoni

    Shay Rishoni

  • Dorette Lüdi, Diagnosed 2014 , ALS Schweiz, Switzerland

    Dorette Lüdi, Diagnosed 2014 , ALS Schweiz, Switzerland

  • Jo Knowlton and her dog, Scotland

    Jo Knowlton and her dog, Scotland

  • Joy Blakeley, Diagnosed 2017 , MND Australia

    Joy Blakeley, Diagnosed 2017 , MND Australia

  • Debbie Craghill, USA

    Debbie Craghill, USA

  • Chen Yin Xue, Taiwan MND Association, Diagnosed 1995, Taiwan

    Chen Yin Xue, Taiwan MND Association, Diagnosed 1995, Taiwan

  • Rosie Riley, Les Turner ALS Foundation, USA

    Rosie Riley, Les Turner ALS Foundation, USA

  • Antonio Ventriglia,  ALS Liga Belgium,  Diagnosed 2013

    Antonio Ventriglia, ALS Liga Belgium, Diagnosed 2013

  • Natalya Rybakova, Russia

    Natalya Rybakova, Russia

  • John and Loretta Russo, USA

    John and Loretta Russo, USA
    final3878

  • Jose Rivero Muñoz, Diagnosed 2015, FYADENMAC, Mexico

    Jose Rivero Muñoz, Diagnosed 2015, FYADENMAC, Mexico

  • David Bishop

    David Bishop

  • Guoqiang Xu, Diagnosed 2016 , Shaanxi ALS Association, China

    Guoqiang Xu, Diagnosed 2016 , Shaanxi ALS Association, China

  • Dawn Morton, Diagnosed 2014 , MND Scotland, UK

    Dawn Morton, Diagnosed 2014 , MND Scotland, UK

  • John Dinon, MND Australia

    John Dinon, MND Australia

  • Steve

    Steve

  • Kirsten Harley,  Diagnosed 2013,  Australia

    Kirsten Harley, Diagnosed 2013, Australia

  • Sanjay Kumar Srivastava, Asha Ek Hope Foundation for ALS/MND, Diagnosed 2018, India

    Sanjay Kumar Srivastava, Asha Ek Hope Foundation for ALS/MND, Diagnosed 2018, India

  • March of Faces Photo Submission_OLGA_ELA ARGENTINA

    March of Faces Photo Submission_OLGA_ELA ARGENTINA

  • Phil Rossall, MND-Association, UK

    Phil Rossall, MND-Association, UK

  • Joanne Pratt, Diagnosed 2011 , MND Australia

    Joanne Pratt, Diagnosed 2011 , MND Australia

  • Lachlan Terry,  MND Australia,  Diagnosed 2015

    Lachlan Terry, MND Australia, Diagnosed 2015

  • Juvenal Bayona Romero

    Juvenal Bayona Romero

  • Tison, USA

    Tison, USA

  • Laurie Petit-Jean, Diagnosed 2012 , ARSLA, France

    Laurie Petit-Jean, Diagnosed 2012 , ARSLA, France

  • Wiebke Braach, Deutsche Gesellschaft für Muskelkranke, Germany

    Wiebke Braach, Deutsche Gesellschaft für Muskelkranke, Germany

  • Mary Thomas, Diagnosed 2013 , MND Australia

    Mary Thomas, Diagnosed 2013 , MND Australia

  • Armando González Gómez, ACELA, Colombia

    Armando González Gómez, ACELA, Colombia

  • Roxana Canova, Diagnosed 2012 ,  Asociación ELA Argentina

    Roxana Canova, Diagnosed 2012 , Asociación ELA Argentina

  • Jan Zuring, Diagnosed 2010 , The Netherlands

    Jan Zuring, Diagnosed 2010 , The Netherlands

  • Angie Bordaen, Diagnosed 2014,  ALS Liga België, Belgium

    Angie Bordaen, Diagnosed 2014, ALS Liga België, Belgium

  • Guido De Mets, Belgium

    Guido De Mets, Belgium

  • Aida Trzmiel de Guterman, Asociacion ELA Argentina, Diagnosed 2007, Argentina

    Aida Trzmiel de Guterman, Asociacion ELA Argentina, Diagnosed 2007, Argentina

  • Ana María Zavala, FYADENMAC, Diagnosed 2019, Mexico

    Ana María Zavala, FYADENMAC, Diagnosed 2019, Mexico

  • Sharon Corosanite, Diagnosed 2014 , ALS Hope Foundation, USA

    Sharon Corosanite, Diagnosed 2014 , ALS Hope Foundation, USA

  • Andrietta

    Andrietta

  • Greg Heydet, ALS Hope Foundation, USA

    Greg Heydet, ALS Hope Foundation, USA

  • Timothy Holman, Switzerland

    Timothy Holman, Switzerland

  • Conny van der Meijden, Diagnosed 2001,  ALS Netherlands

    Conny van der Meijden, Diagnosed 2001, ALS Netherlands

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