Sourced from: http://www.autism.org.uk/get-involved/media-centre/news/2016-06-08-updated-so-called-cures.aspx?gclid=Cj0KEQjw-ezKBRCGwqyK0rHzmvkBEiQAu-_-LLCmrUZCiKaxDGUv8GpwDGx-gUQeI70XSWif8Q9A4WwaAjzl8P8HAQ
We are concerned by stories about two dangerous products
being peddled as 'cures' for autism and other disabilities and conditions:
•GcMAF, an unlicensed blood product
•Miracle Mineral Solution (MMS), a bleach banned for human
consumption
These products can be harmful – do not use them in any
circumstances.
There is no verified scientific evidence of any kind to
support the claims made by those who promote and sell these products.
Authorities, like the Medicine and Healthcare Products Regulatory Agency (MHRA)
and the Food Standards Authority, are investigating people selling these
products.
How many
people are using these products?
A handful of people have contacted us about these products,
in the main to raise concern that they exist.
We’ve also reached out to our volunteer-run branches to try
to establish whether there is demand but received a very low response rate. We
have supported journalists researching the sale and use of these products and
we know that they too have struggled to find examples of people using the
products. Thankfully, this suggests that very few people have considered using
these products.
However our charity is, of course, not in contact with every
person on the autism spectrum or family member in the UK, so we can’t be
certain how many people may be considering using these products. We also know
how difficult life can be for families who can’t get support and how vulnerable
they might be to claims from dubious individuals or companies.
This is why it's so important that families have access to
up-to-date and robust information about support, therapies and interventions
and report any concerns they have.
A 'cure'
for autism?
Autism is a lifelong condition. There is no 'cure' and the
idea of aiming to 'cure' autism is often deeply upsetting for people on the
autism spectrum and their families, who see autism as a part of themselves or
their loved ones.
Autism can present many challenges but there are many
approaches and forms of support that can help autistic people to live full and happy
lives, whether in employment, independent living or a care setting.
We would advise anyone looking for support to seek out
reliable information before making any decisions about approaches, from trained
local professionals, NICE guidance or our own information.
The National Institute for Health and Care Excellence (NICE)
looks regularly at what the evidence says about interventions for autism. Its
Quality Standard on autism explains which interventions and therapies are
effective and rules out others. You can also find out what approaches we have
found helpful during the 50-plus years we've been working with autistic people
by reading our position statement.
What can
be done?
It's important to do everything we can to make sure
vulnerable autistic people and their families don't fall for claims made about
dubious and/or dangerous autism treatments and 'cures'.
Prevention
•Equip the public with accurate and evidence-based
information about which support, strategies and interventions can help.
•Campaign and work with professionals to improve support for
autistic people, preventing them from falling into crisis and feeling the need
to turn to untested therapies and interventions.
Vigilance
and reporting
•Report the marketing and/or use of dangerous products
targeted at autistic people.
•Alert the relevant authorities to dangerous products being
marketed or sold so they can investigate and address their supply (see below
for more information and contacts).
•We remain in contact with MHRA, who have advised people not
to use GcMAF. They have recently confirmed to us that there is an ongoing
investigation of GcMAF products. The MHRA also advise people not to buy MMS and
they work with the Food Standards Agency who have issued warnings against using
this product.
Is there
any legislation in place?
We understand that some campaigners are calling for specific
legislation to be introduced to stop the supply, marketing and use of dangerous
therapies and interventions – often marketed as ‘treatments’ or even ‘cures’.
Our charity shares their concern and agrees that dangerous products should not
be sold or distributed. We’re always open to ideas on how to address this, and
to adapting our approach (outlined above), but we do not believe that new
legislation is the best solution at this time.
There are
existing safeguards in place
•There are existing legal and regulatory systems and
authorities governing medicine licensing, food and trading standards that have
the power to investigate and stop the sale of dangerous products.
•It is already illegal to administer a harmful or dangerous
product to another individual and can be prosecuted within the criminal law.
•Given that there is legislation in place already on the
sale of dangerous products, we believe the best and quickest way of stopping
the sale of these products is to make sure autistic people and their families
get the support they need and have access to accurate and robust information
about what works.
Concerns
over efficacy of legislation
•There is very little evidence about the scale and nature of
the problem, what any legislation would look like, how it would work and
whether it would be successful. Without this evidence, it is not possible to
make the case for legislation to any government. We are concerned that any
legislation would be extremely difficult to formulate and enforce – not least
because these products are available on the internet and, as far as we
understand, are often sold as individual ingredients and only become illegal
when put together. They also form a ‘moving target’ as charlatans and quacks
find other products to sell.
•We’re also concerned that legislation would not stop people
desperate for any solution from seeking out products which are already
unlicensed and sold through ‘unofficial’ channels.
•We believe the time, effort and money that would go into
creating new legislation would be better and more effectively spent enforcing
existing laws and systems.
How we
campaign
There are hundreds of things which we would like change
about policy and public attitudes to make life better for autistic people and
family members. But, our campaign work is funded by donations, so we have to
prioritise to make sure we make the most impact. Find out how we decide what to
campaign about.
What to
do if you're concerned about a company or claim?
If you are concerned about the practice of an individual or
company or the claims they're making in relation to autism and therapies and
interventions, please contact the relevant authorities below.
•Citizens Advice Consumer Helpline: For concerns about a
company or individual seller, their claims or practices. They can refer to
Trading Standards to investigate.
•Advertising Standards Authority: For inaccurate or
misleading claims made by a company or individual seller.
•Medicine and Healthcare Products Regulatory Agency (MHRA):
For concern about a drug, medicine or medical product.
Campaigners
Emma Dalmayne and Fiona O'Leary are campaigning against
these products, calling on governments to introduce new legislation. You can read more about their work at
Autistic Rights Together.
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