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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

  • Steven Gallagher, Canada

    Steven Gallagher, Canada

  • Rosie Riley, Les Turner ALS Foundation, USA

    Rosie Riley, Les Turner ALS Foundation, USA

  • Liam Dwyer, England

    Liam Dwyer, England

  • Leon Ryba, Asociación ELA Argentina

    Leon Ryba, Asociación ELA Argentina

  • Sam Hayden-Harler, Motor Neurone Disease (MND) Association, UK

    Sam Hayden-Harler, Motor Neurone Disease (MND) Association, UK

  • Valdomiro Xavier Honório, Brazil

    Valdomiro Xavier Honório, Brazil

  • Mike Small, Motor Neurone Disease (MND) Association, UK

    Mike Small, Motor Neurone Disease (MND) Association, UK

  • Brian Parsons

    Brian Parsons

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

    Susan Anderson, Diagnosed 2014 , Hope Loves Company, USA

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

    Sharon Corosanite, Diagnosed 2014 , ALS Hope Foundation, USA

  • Greg Heydet, ALS Hope Foundation, USA

    Greg Heydet, ALS Hope Foundation, USA

  • Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

    Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

  • Eddy LeFrançois, Diagnosed 1992,  ALS Canada

    Eddy LeFrançois, Diagnosed 1992, ALS Canada

  • JP

    JP

  • Jean Waters, Diagnosed 2004, MND Association of England, Wales and N Ireland

    Jean Waters, Diagnosed 2004, MND Association of England, Wales and N Ireland

  • Eric Von Schaumburg, USA

    Eric Von Schaumburg, USA

  • Rolf Mauch, Association ALS Switzerland, Diagnosed 2015

    Rolf Mauch, Association ALS Switzerland, Diagnosed 2015

  • H. Todd Kelly, Diagnosed 2013 , ALS Hope Foundation, USA

    H. Todd Kelly, Diagnosed 2013 , ALS Hope Foundation, USA

  • Mahmood Anwar, UK

    Mahmood Anwar, UK

  • Cassio Fernando da Silva, Diagnosed 2013 , ABrELA, Brazil

    Cassio Fernando da Silva, Diagnosed 2013 , ABrELA, Brazil

  • Leon Ryba, Argentina

    Leon Ryba, Argentina

  • England-Lee-Millard, UK

    England-Lee-Millard, UK

  • Paul Launer, USA

    Paul Launer, USA

  • Amparo Muriel Engativa, Colombia

    Amparo Muriel Engativa, Colombia

  • Lucy Lintott, Diagnosed 2013 , MND Scotland, UK

    Lucy Lintott, Diagnosed 2013 , MND Scotland, UK

  • Sally Pauls, Diagnosed 2006 , Les Turner ALS Foundation

    Sally Pauls, Diagnosed 2006 , Les Turner ALS Foundation

  • Mark Miller

    Mark Miller

  • MNDaSG Group PALS & CALS, Motor Neurone Disease Association, Singapore (MNDaSG)

    MNDaSG Group PALS & CALS, Motor Neurone Disease Association, Singapore (MNDaSG)

  • Alfredo Santos, Diagnosed 2013 , ACELA, Colombia

    Alfredo Santos, Diagnosed 2013 , ACELA, Colombia

  • Liz Ogg, Diagnosed 2013 , MND Scotland, UK

    Liz Ogg, Diagnosed 2013 , MND Scotland, UK

  • Peng Yi-Wen

    Peng Yi-Wen

  • Fabio Carvalho, Associação Pró-Cura da ELA, Brazil

    Fabio Carvalho, Associação Pró-Cura da ELA, Brazil

  • Hans Dieter Olszewski, Diagnosed 2010 , DGM, Germany

    Hans Dieter Olszewski, Diagnosed 2010 , DGM, Germany

  • Jette Odgaard Villemoes, Muskelsvindfonden, Denmark

    Jette Odgaard Villemoes, Muskelsvindfonden, Denmark

  • Bruno Leanza Mantegna, Diagnosed 1999 , AISLA Onlus, Italy

    Bruno Leanza Mantegna, Diagnosed 1999 , AISLA Onlus, Italy

  • Phil Rossall, MND-Association, UK

    Phil Rossall, MND-Association, UK

  • Lachlan Terry,  MND Australia,  Diagnosed 2015

    Lachlan Terry, MND Australia, Diagnosed 2015

  • Shay Rishoni

    Shay Rishoni

  • Carlos Alberto Arango, Colombia

    Carlos Alberto Arango, Colombia

  • Dorette Lüdi, Diagnosed 2014 , ALS Schweiz, Switzerland

    Dorette Lüdi, Diagnosed 2014 , ALS Schweiz, Switzerland

  • Imelda Arenas, ACELA, Colombia

    Imelda Arenas, ACELA, Colombia

  • IMG_2658

    IMG_2658

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

    Margarita Pizarro, Asociacion ELA Argentina, Diagnosed 2017, Argentina

  • Purningam Jacob, Diagnosed 2012 , Asha Ek Hope Foundation, India

    Purningam Jacob, Diagnosed 2012 , Asha Ek Hope Foundation, India

  • Glen Elison,  ALS Hope Foundation,  Diagnosed 2019,  USA

    Glen Elison, ALS Hope Foundation, Diagnosed 2019, USA

  • Margreth Burger-Saile, Diagnosed 2011,  ALS Schweiz,  Switzerland

    Margreth Burger-Saile, Diagnosed 2011, ALS Schweiz, Switzerland

  • Art Eggert, USA

    Art Eggert, USA

  • Graham Johnson, MND Australia

    Graham Johnson, MND Australia

  • Anita Forte, Les Turner ALS Foundation, USA

    Anita Forte, Les Turner ALS Foundation, USA

  • Ian Gale, MND Australia

    Ian Gale, MND Australia

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