Consumer Health Digest #18-24

Your Weekly Update of News and Reviews
June 17, 2018

Consumer Health Digest is a free weekly e-mail newsletter edited by William M. London, Ed.D., M.P.H., with help from Stephen Barrett, M.D. It summarizes scientific reports; legislative developments; enforcement actions; news reports; Web site evaluations; recommended and nonrecommended books; and other information relevant to consumer protection and consumer decision-making. Its primary focus is on health, but occasionally it includes non-health scams and practical tips.

Conference promoting "facilitated communication" criticized. More than 30 senior academics and clinicians have raised concerns about the agenda to promote the discredited and potentially dangerous method of "facilitated communication" (FC) at the fifth annual Midwest Summer Institute: Inclusion & Communication for All, hosted June 18-19, 2018, by the University of Northern Iowa's School of Education. [Miller V. 'Facilitated communication' conference draws fire at University of Northern Iowa. The Gazette, Jun. 15, 2018]

The FC process typically involves a "facilitator" who supports the hand or arm of a severely disabled person who is alleged to spell out messages using a typing keyboard or pointing device for selecting letters, numbers, or words. While proponents claim that FC enables nonverbal individuals to express their own thoughts, properly controlled testing clearly shows that facilitators compose the messages and can do so without realizing their influence. The summer institute includes communication workshops featuring "nationally-recognized Master Trainers in the world of Facilitated Communication" such as Harvey Lavoy. A video posted on YouTube by a father of an 11-year-old nonverbal boy with an autism diagnosis, appears to show (beginning at 6:25) Lavoy, with a tablet computer held in his right hand and the boy's right wrist in his left hand, steering rather than merely supporting the boy's hand to generate messages. In another video, Lavoy, as "facilitator," appears to consistently move a boy's hand to key positions on a tablet to generate messages while, unlike the boy, consistently looks at the tablet when touching the keys. (See. for example, a still image at 7:44.) Neither boy appears to be focused on the key-selection task.

In 2014, the International Society for Augmentative and Alternative Communication issued a position statement that concluded:

The weight of evidence does not support FC and therefore it cannot be recommended for use in clinical practice. This position statement is consistent with the position statements of the following reputable organizations: American Academy of Pediatrics (AAP, 1998), American Academy of Child and Adolescent Psychiatry (AACAP, 1993), American Association of Mental Retardation (AAMR, 1995), American Psychiatric Association Council of Representatives (APACR, 1994), American Psychological Association (APA, 1994), American Speech-Language and Hearing Association (ASHA, 1995), Association for Behavior Analysis (ABA, 2005), Association for Science in Autism Treatment, Autism & Asperger Förbundet (2012), Behavior Analysis Association of Michigan (BAAM, 1998), New Zealand Ministries of Health and Education (2008), Scottish Intercollegiate Guidelines Network (2007), Speech Pathology Australia (2012), Socialstyelsen (The National Board of Health and Welfare, Sweden, 2014), Victorian Advocacy League for Individuals with Disabilities Inc (VALID, 2012), and Heilpaedagogische Forschung (2003). 

The American Speech-Language and Hearing Association has drafted a position statement on FC and has invited comments until June 25, 2018 before the statement is finalized. The draft statement describes FC as:

a discredited technique that should not be used. There is no scientific evidence of the validity of FC, and there is extensive scientific evidence—produced over several decades and across several countries—that messages produced using FC reflect the voice of the "facilitator" and not of the person with a disability. Furthermore, there is extensive evidence of harms related to the use of FC. Information obtained through the use of FC should not be considered as the voice of the person with a disability.

National Guideline Clearinghouse to close. The Agency for Healthcare Research and Quality (AHRQ)'s National Guideline Clearinghouse (NGC) is a searchable repository of summaries of more than 4,000 clinical practice guidelines made by professional societies, voluntary health agencies, and governmental agencies to explain the evidence for using methods of prevention, diagnosis, and treatment in more than 50 health care fields. NGC has also offered guideline syntheses that compare different guidelines available on similar topics and expert commentaries that provide additional insights related to evidence-based practice. AHRQ has announced:

The AHRQ National Guideline Clearinghouse (NGC, Web site will not be available after July 16, 2018 because federal funding through AHRQ will no longer be available to support the NGC as of that date. AHRQ is receiving expressions of interest from stakeholders interested in carrying on NGC's work. It is not clear at this time, however, when or if NGC (or something like NGC) will be online again. In addition, AHRQ has not yet determined whether, or to what extent, the Agency would have an ongoing role if a stakeholder were to continue to operate the NGC.

Guidelines will still be available from the agencies that produce them, but they will be more difficult for consumers and health care professionals to locate. NGC reportedly had a budget for fiscal year 2017 of only $1.2 million, but the site drew an average of 200,000 visitors per month. [Oransky I, Marcus A. Trump administration is shutting down practice-guidelines clearinghouse for doctors. STAT, Jun. 13, 2018]

FDA warns companies selling highly concentrated caffeine products. The Food and Drug Administration has issued warning letters to the parties responsible for and Dual Health Body and Mind for illegally selling highly concentrated caffeine products that require consumers to make accurate measurements without proper equipment, thereby placing consumers at risk of self-administering life-threatening caffeine doses. [FDA warns companies to stop selling dangerous and illegal pure and highly concentrated caffeine products. FDA Press Announcement, Jun. 5, 2018]

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This page was posted on June 17, 2018