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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

  • Fabio Carvalho

    Fabio Carvalho

  • Mary Thomas, Diagnosed 2013 - MND Australia

    Mary Thomas, Diagnosed 2013 – MND Australia

  • Oliver Juenke, DGM, Germany

    Oliver Juenke, DGM, Germany

  • Steve Lufkin, USA

    Steve Lufkin, USA
    IMG_3993

  • Catherine Pearce, Australia

    Catherine Pearce, Australia

  • Alberto Baez Murillo, Colombia

    Alberto Baez Murillo, Colombia

  • Steven Gallagher, Canada

    Steven Gallagher, Canada

  • Roxana Canova, Diagnosed 2012 - Asociación ELA Argentina

    Roxana Canova, Diagnosed 2012 – Asociación ELA Argentina

  • Shay Rishoni, Diagnosed 2011 - Prize4Life, Israel

    Shay Rishoni, Diagnosed 2011 – Prize4Life, Israel

  • Joyce Rusinak, Forbes Norris ALS Center, USA

    Joyce Rusinak, Forbes Norris ALS Center, USA

  • Joy Blakeley, Diagnosed 2017 - MND Australia

    Joy Blakeley, Diagnosed 2017 – MND Australia

  • Elkin Ramiro Gaviria Muñoz, Diagnosed  December 2018

    Elkin Ramiro Gaviria Muñoz, Diagnosed December 2018

  • Frank "Papa" Taylor

    Frank “Papa” Taylor

  • Philip Brindle, MND Association, Diagnosed 2015, England

    Philip Brindle, MND Association, Diagnosed 2015, England

  • Rolf Mauch, Association ALS Switzerland, Diagnosed 2015, Switzerland

    Rolf Mauch, Association ALS Switzerland, Diagnosed 2015, Switzerland

  • Kirsten Harley, Diagnosed 2013 - Australia

    Kirsten Harley, Diagnosed 2013 – Australia

  • Stephanie Christiansen Hall, Canada

    Stephanie Christiansen Hall, Canada

  • Maurice LeClerc, ALS Canada

    Maurice LeClerc, ALS Canada

  • Juvenal Bayona Romero

    Juvenal Bayona Romero

  • Mark Miller

    Mark Miller

  • Art Eggert, USA

    Art Eggert, USA

  • Antonio Ventriglia, ALS Liga Belgium, Diagnosed 2013, Belgium

    Antonio Ventriglia, ALS Liga Belgium, Diagnosed 2013, Belgium

  • Conny van der Meijden, Diagnosed 2001 - ALS Netherlands

    Conny van der Meijden, Diagnosed 2001 – ALS Netherlands

  • John and Loretta Russo, USA

    John and Loretta Russo, USA
    final3878

  • Chun Ju Xiao, China

    Chun Ju Xiao, China

  • Josée Kolijn-de Man, Diagnosed 2015 - ALS Patients Connected, The Netherlands

    Josée Kolijn-de Man, Diagnosed 2015 – ALS Patients Connected, The Netherlands

  • Ailsa Malcolm-Hutton, Diagnosed 2013 - MND Association of England, Wales and N Ireland

    Ailsa Malcolm-Hutton, Diagnosed 2013 – MND Association of England, Wales and N Ireland

  • Osiel Mendoza, Diagnosed 2016 - ALS Therapy Development Institute, USA

    Osiel Mendoza, Diagnosed 2016 – ALS Therapy Development Institute, USA

  • Sally Pauls, Diagnosed 2006 - Les Turner ALS Foundation

    Sally Pauls, Diagnosed 2006 – Les Turner ALS Foundation

  • Ann Nicol

    Ann Nicol

  • Nicholas (Nic) Bowman, MND Association of South Africa, Diagnosed 2016, Australia

    Nicholas (Nic) Bowman, MND Association of South Africa, Diagnosed 2016, Australia

  • Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

    Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

  • Charlie “Hark” Dourney, Diagnosed 2007 - Hark ALS, USA

    Charlie “Hark” Dourney, Diagnosed 2007 – Hark ALS, USA

  • Guido De Mets, Belgium

    Guido De Mets, Belgium

  • Cath Muir

    Cath Muir
    Cath

  • Denis Blais, Diagnosed 2015 - ALS Canada

    Denis Blais, Diagnosed 2015 – ALS Canada

  • Robbie Caliste, UK

    Robbie Caliste, UK

  • Duncan Bayly - MND Australia

    Duncan Bayly – MND Australia

  • Joanne Pratt, Diagnosed 2011 - MND Australia

    Joanne Pratt, Diagnosed 2011 – MND Australia

  • Amparo Muriel Engativa, Colombia

    Amparo Muriel Engativa, Colombia

  • Monica Soriano, Diagnosed 2011 - Asociación ELA Argentina

    Monica Soriano, Diagnosed 2011 – Asociación ELA Argentina

  • Susan Anderson, Diagnosed 2014 - Hope Loves Company, USA

    Susan Anderson, Diagnosed 2014 – Hope Loves Company, USA

  • Brian Lovell, Diagnosed 2011 - MND Australia

    Brian Lovell, Diagnosed 2011 – MND Australia

  • Lachlan Terry, MND Australia, Diagnosed 2015, Australia

    Lachlan Terry, MND Australia, Diagnosed 2015, Australia

  • Colm Francis Davis, Ireland

    Colm Francis Davis, Ireland

  • Liong Ting Ngu, MND Malaysia, Diagnosed 2014, Malaysia

    Liong Ting Ngu, MND Malaysia, Diagnosed 2014, Malaysia

  • Luis Antonio Pimenta Lima, Brazil

    Luis Antonio Pimenta Lima, Brazil

  • Dorette Lüdi, Diagnosed 2014 - ALS Schweiz, Switzerland

    Dorette Lüdi, Diagnosed 2014 – ALS Schweiz, Switzerland

  • Daniel Hare

    Daniel Hare

  • Valdomiro Xavier Honório, Brazil

    Valdomiro Xavier Honório, Brazil

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