DIABETES INTELLIGENCE REPORT
A look into the concerns of over 20,000 people affected by diabetes in the UK.
With Insights from: Bayer • Boehringer Ingelheim • Bristol-Myers Squibb • GlucoRx
JDRF • Johnson & Johnson • NHS • Roche • Sanofi • Spirit Healthcare
20,000 PATIENT VIEWS
12 EXPERT INSIGHTS
5 MINUTES OF FACTS
1/14
Glucose meters & testing image of monitors
• Over 50% had a HbA1c reading of 7.5 or higher.
• Of meter users - 80% of respondents received a
free meter. 20% paid for a meter, of which 70%
bought their meter from a local pharmacy.
• 65% of free meter users were given their meter by a
healthcare professional.
• 17% of free meter users received their meter via a
Diabetes.co.uk promotion.
• 88% of meter users have test strips prescribed by
their local health authority.
• 72% of test strip purchases are made from
pharmacies.
• 48% of diabetics have anxiety about having test
strip prescriptions restricted.
Hypos
• 58% of diabetic respondents have hypos weekly,
monthly or every few months.
• 18% of diabetic respondents have a serious hypo
every few months.
• 64% feel anxiety over having some form of hypo.
Patient Care
• 41% of carers felt they receive adequate
professional and emotional support.
• 60% of carers reported anxiety and worry about
being unable to care for their patient.
• 54% of carers would use a support forum to share
experiences with a carer peer group.
• Online diet logs were the diabetes support
technology favoured by carers.
Respondent overview:
57% FEMALE
89% TAKE MEDICATION TO MANAGE THEIR DIABETES
47 Years oldAVERAGE AGE
83% WHITE/CAUCASIAN
40% of diabetes patients TYPE 1 DIABETES
13% SMOKE OVER 10 CIGARETTES
PER DAY
59% of diabetic respondentsTYPE 2 DIABETES
8/10 RESPONDENTS HAVE DIABETES
“It’s important for patients and their healthcare providers that a range of meters are available so individual
patient requirements can be truly met, for example, the accuracy of a meter is going to be critical for someone
self-adjusting their insulin dosage. Putting patients at the heart of the NHS is everyone's priority. Patients need
access to a range of monitoring devices and strips so informed decisions can be made between the individual
and their healthcare provider”. 1 Ros Barker, Strategic Marketing Manager, Diabetes Care, Bayer
2/14
About Diabetes.co.uk
Diabetes.co.uk is a privately owned website and forum
that provides support and education to people with
diabetes. The Diabetes.co.uk website attracts over
750,000 unique visitors and more than one million total
visitors (40% repeat visits) each month.
Diabetes.co.uk's reach also includes over 135,000
registered members who have opted-in for a twice
weekly e-newsletter, more than 100,000 Likes on the
Diabetes.co.uk Facebook page with extremely high
levels of engagement, over 8,500 followers on Twitter
and 90,000+ forum users.
Diabetes.co.uk has a range of innovations coming to
market, from structured online education, an innovative
type 2 testing subscription service and a new mobile
app called DiabetesPA for diabetics to independently
manage their condition.
For more information and to stay up to date with the
latest news, please visit www.diabetes.co.uk
This report in 30 seconds…
Diabetes.co.uk set out to discover two things:
• What are the most signifi cant challenges for people
affected by diabetes in the United Kingdom?
• How effective is the current education support for
people with diabetes?
Diabetes.co.uk invited people by e-newsletter to
respond to a 52 question survey. Within 4 weeks, over
20,000 people contributed. The highest responded
question was "How much do you worry about
having hypos?". 64% of respondents stated that
the most signifi cant challenge they face is a fear of
hypoglycemia.
In the last year, we also found that 19% of patients
(type 1 and type 2 diabetes) had experienced having
their glucose monitoring supplies either restricted
or refused. For the UK, this restriction is rooted in
vague NICE guidelines, which leave space for different
interpretation by local health providers.
Although guidelines are vague, this research found
successful examples of approaches that have driven
down costs for providers and improved test strip access
for patients.
The NHS, Glasgow and Lewisham Clinical
Commissioning Group’s (CCG’s) are acknowledged as
leaders in creating a restriction free environment. The
pharmaceutical industry is focused on improving access
for patients. For example, Sanofi and Boots increased
access to blood glucose meters and test strips through
a joint working program that reduced test strip prices
for the customer.
The report then highlights the differences in
education and support across Europe, with Germany
being identifi ed as a leader in diabetes structured
education. While some UK programmes may be failing
to gain traction, many of the companies approached
for comments and recommendations suggest that
improved education, joint working and innovative new
products on the market could help to improve health
outcomes and reduce costs.
Enjoy the report...
3/14
Diabetes.co.uk asked people to contribute to a 52
question survey. Within 4 weeks, over 20,000 people
contributed. PatientsCreate took the key insights to
Bayer, Boehringer Ingelheim, Bristol Myers Squibb, GlucoRx,
JDRF, Johnson & Johnson, NHS, Roche, Sanofi and Spirit
Healthcare to get their views.
64% of respondents fear having a hypo.
This fear may contribute to respondents deliberately
running high sugar levels whilst at work, driving and
taking part in sport. Learning how to monitor these
sugar levels can sometimes mean more frequent
testing.
One of the most alarming survey fi ndings is that 19%
of patients with type 1 and type 2 diabetes had, in the
last year, experienced having their glucose monitoring
supplies either restricted or refused!
Furthermore, 48% of all respondents stated moderate
or strong anxiety regarding restricted or reduced
access to test strips.
Kris Wood, 27: “I have taken part in various type
1 clinical trials, which has meant I've received a
higher level of care than most people, from 24 hour
phone access to a consultant in the 12 months fol-
lowing my diagnosis, which was really impressive!
My Diabetes Specialist Nurse tends to change a lot
but they are usually really helpful. My current DSN
recommended me the latest glucose meter, which
I’m glad to have. I’ve seen fi rst-hand a variation in
the quality of care that you receive depending on
where you are in the UK. When I lived in Newcastle,
there were never any problems collecting medicine
and test strips from my pharmacist. Since mov-
ing to London, there’s always a delay or something
missing in my prescription when I try to pick it up”.
Theodore Eversole, 66: “I am very active, I work
full time, and I drive every day. I’ve had diabetes
for over ten years and I’m very passionate about
the self-management of my diabetes. I have often
taken part in various trials. I have a good relation-
ship with my GP who told me that testing 3–4 times
per week is suffi cient. However, I am worried that a
restriction in my test strips could affect my ability
to self-manage my condition and to remain active”.
Patient stories
4/14
The annual cost of blood glucose test strips for the
NHS stands at £150 million, representing 1.1% of
the total spend on diabetes and its complications. 5
Unfortunately, in an increasing number of incidences,
short-term fi nancial savings by local decision makers
are threatening self-management of diabetes. For
example, restrictions regarding access to blood glucose
test strips or inconsistent formulary processes/
decisions surrounding the type of blood glucose meter
made available to patients.
As Angela Magny, Public Affairs Manager, Roche Diabetes
Care pointed out that a key element of the variation in
strip restriction is the adoption of local formularies
by CCGs for blood glucose monitoring. Although NICE
published guidelines on the development of local
formulary guidelines in December 2012, they failed to
adequately cover medical technology, including the
products used to self-test blood glucose.
Examples have been found from Greater Glasgow and
Clyde SIGN guidelines that state in bold headlines:
“This is a guideline for what is minimally acceptable
clinically. If a patient, no matter the treatment group,
wishes to monitor more frequently they should be
supported to do so (within reason)”. Lewisham CCG has
recently written to all GP’s stressing, “It is essential that
supplies of blood glucose testing strips for people with
type 1 diabetes are NOT RESTRICTED”. 6
Although there is no standard policy in place, and NICE
guidelines are open to interpretation, positive examples
of policy at a local level is a step in the right direction.
With access to test strips causing concern for
patients in the UK, is the NHS to blame?
The charity Diabetes UK illustrated that there are few
examples of NHS policies, which make it clear that people
with type 1 diabetes should be prescribed suffi cient
testing strips for their clinical needs as specifi ed by the
Department of Health letter 2 earlier this year and in line
with Diabetes UK’s position statement. 3
Over the last two decades it has been fi rmly
established that tight glycemic control is associated
with a signifi cant reduction in serious long-term
diabetes related complications. Self-monitoring of
blood glucose (SMBG) is an effective tool in the self-
management of glucose levels in people with type 1
diabetes and people with type 2 diabetes using insulin
therapy. It helps people with diabetes using insulin
achieve tight glycemic control and to identify low
blood glucose levels before the development of severe
hypoglycaemia and the need for medical attention. 4
Diabetes.co.uk's survey suggests that self-monitoring
of blood glucose levels should be regarded as an
integral part of treatment for everyone with type 1
diabetes, and access to blood glucose testing strips
and meters should not be restricted.
So the argument falls back to money?
5/14
What about patients taking full control?
20% of respondents said that they had bought a second
blood glucose monitor (BGM) because the device
provided by their Health Care Professional (HCP) does
not have all the features they would like. The device
provided by the HCP will be their primary device,
providing free access to test strips but they may then
buy a more advanced machine for themselves, which
offers additional analysis and wrap around services.
Jason Lovatt, Brand Lead, Sanofi explained how
“Patients could get additional value from combining
smartphone technology and Blood Glucose Monitoring..
For example, new products leverage smart phone
technology to display and help interpret the trends in
blood glucose levels. This means that the patient can
start to predict trends in order to manage their own
care”. This holds a lot of potential for patients and
HCPs.
Chris Barker, Managing Director, Spirit Healthcare argues
that ultimately monitoring and control should be in
the hands of the patient. He said “things like personal
health budgets could be really useful as it would help
people take more ownership of their condition”.
Is this a UK or European problem?
While the Diabetes.co.uk survey focused on patients
within the UK, we can learn from a broader analysis by
the London School of Economics into Germany, France,
Italy, Spain and the UK.
Estimated diabetic population in each country.7
Total cost of diabetes care in each country.6
Although the data6 shows that Germany has the
highest population and spending on diabetes, it
doesn’t show how “German researchers lead the way
in developing and implementing successful structured
insulin training programmes for both adults and
children with type 1 diabetes. For example, training
has been delivered both within the in-patient settings
immediately after diagnosis, as well as to those who
have had the condition for some time”. (JDRF’s Type 1
Diabetes Research Roadmap).
Thomas Sargant, Territory Account Specialist, Bristol-Myers
Squibb explained how he has seen fi rst-hand that there
are more examples “outside of the UK that focus on
education as a tool of prevention more than simply
medication”. The question then is who should fi x this
problem within the UK, and…
0
1000000
2000000
3000000
4000000
5000000
6000000
7000000
8000000
UK
SPAIN
ITALY
GERMANY
FRANCE
DIABETES POPULATION
0
10000
20000
30000
40000
50000
COST PER CAPITA
UK
SPAIN
ITALY
GERMANY
FRANCE
6/14
So what does the future hold?
The NHS believes in patient self-monitoring. John
Cartwright, Urgent Care Lead, Barnsley Hospital NHS
Foundation explains there is a strong push to “educate
and empower patients to self-manage and access
services in their community, with the aim to improve
the outcome for the patient”. A second but equally
high priority is ensuring that “we manage the diabetes
clinical pathways to reduce the number of unnecessary
visits to the emergency department”. Cartwright, in this
instance, looks to the Trusts to increase support and
education to make this a reality.
Can drug and device companies help?
Jason Lovatt, Brand Lead, Sanofi recommends that the
NHS pursue joint working projects with pharmaceutical
companies. “We are perfectly placed to provide the
necessary education to improve knowledge, blood
glucose control, weight and dietary management,
physical activity and psychological well-being etc.”
A great example is how Roche was the fi rst company to
enter into partnership with a retail pharmacy to stock
blood glucose strips on shelf for customers to buy. This
helped patients who face restrictions or who want to
monitor their blood glucose more closely.
Dr. Partha Kar, Clinical Director, Diabetes & Endocrinology,
Portsmouth Hospitals NHS Trust shared his view that “pharma
are looking for new and novel ways to engage patients,
it makes sense to work together to help improve patient
outcomes”.
Johnson & Johnson gives a valuable example of this in
action; they sponsor workshops around the country
for the top HCP leaders so they can focus on better
patient motivation and positive reinforcement. Martin
Lambert, Johnson & Johnson, Senior Marketing Manager UK
& Ireland states that the focus is “to ensure specialists
are aware of the latest research and innovations coming
to market”. Joint working projects make the most sense
for all stakeholders. Sanofi and Boots provide a great
example of this:
...Are the UK and the NHS playing catch up to the great work in Germany?
Chris Barker, Managing Director, Spirit Healthcare explained
how they have piloted free structured educational
courses in the UK. These courses include sessions on
diet, exercise and insulin/drug management, as well
as the use of blood glucose meters. We have had very
positive feedback, however there is a large cohort of
patients with diabetes who are a challenge to engage
with and it is not uncommon for patients to decline
educational courses; so much so that some clinicians
question why they are commissioned in the fi rst place.
In contrast to Germany, where the patients have to pay
for a similar course, attendance rates are much higher.
This could be because people place more value on things
they actually pay for, or because the German structured
educational approach is facilitated by a healthcare
insurance system whose reimbursement to local
healthcare providers depends upon quality skills training
for people with diabetes, their families and carers.
Angela Magny, Public Affairs Manager, Roche Diabetes
Care points out that “one area of diabetes care which
is comparable across Europe is the uptake of diabetes
pumps. Numerous audits have found pump uptake in
the UK is one of the lowest in Europe, with the lack of
access to structured education a signifi cant barrier.
NICE guidelines stipulate that structured education
needs to be a recognised course by the NHS. A lack of
clinical ambition and poor fi nancial incentives have also
been identifi ed as barriers”.
7/14
Case study
Sanofi and Boots created a strong partnership to improve
outcomes and access for patients. Over the Counter (OTC)
sales were supported by both companies offering price
reductions to bring down the cost to consumer.
OTC sales are normally marked up by pharmacies
because they are not getting the dispensing
compensation from the government. This provides a
solid example of key players outside of the NHS taking
the initiative to improve outcomes.
But it doesn’t have to be large partnerships in
order to be successful:
Chris Chapman, National Sales Manager, GlucoRx explained
how they decided to launch a cost effective product
to improve access by setting a lower price point: “We
were the fi rst company to launch a blood glucose meter
and test strips under £10. This reduced price point has
produced savings for the NHS”.
“Pharma are looking for new and novel ways to engage patients, it makes sense to work with the NHS to help improve patient outcomes”However, other industry experts have argued that a
reduction in price may not be the best option for all
patients. Some cheaper products may not have the
same functionality or reliability as some of the more
expensive options.
What about future innovations?
The market could be set to change again in the coming
years. We have identifi ed that the reduced cost of test
strips is a big help to the purchaser and patients alike.
However, not everyone is happy and there is currently a
debate as to the future of the low-cost test strip.
New devices offering additional value might well prove a
most signifi cant game changer for patients, particularly
if that value offers the ability to change behaviour in the
monitoring of blood glucose levels.
This might help reduce the risk of developing
complications and severe co-morbidities.
James Gilpin, 28 “I am very active working full time
and cycling to work daily, which is a 19km round
trip. I have been told by my GP that in order to
receive access to the required number of test strips
needed, I should consider changing my BGM and
start using a cheaper alternative. I was happy to
do this, but I have still found that my doctor makes
it hard for me to access test strips by limiting the
amount I can take away at any one time”.
5.7
8/14
For example, some monitors make it possible to estimate
HbA1c readings. This means patients can check progress
regularly and get feedback, which is more than just a
snapshot of blood glucose results. Other innovations
include the ability to take blood glucose readings with a
mobile device. This has the potential to lead to service-
based systems for patients and HCPs alike.
Other innovations include monitors looking to support
different types of patients. For example, some devices
allow the more engaged patient to make adjustments
based on his or her routine. The devices look for patterns
in blood glucose and compare highs and lows over a fi ve
day window so they can effi ciently fi nd relevant patterns.
For example, if a patient experiences a hypo at a similar
time of day, the device can start to highlight the triggers
such as gym exercise, certain foods or incorrect insulin
dosage. That information prompts the patient to do
something differently. Previously, the HCP would do this
analysis and provide the recommendation.
But not all innovations need to be about devices:
sometimes it’s just about looking at the problem from
a different angle. The case study below isn’t related
to diabetes research but offers a great example of
engaging a community from the bottom up.
Pfi zer wanted to educate more women about the
risks of coronary heart disease. They turned to a
familiar presence: their hairdressers! Their local
research ‘confi rmed that hard-to-reach populations
want health messages brought to them in their
communities,’ so they came up with an innovative
method to achieve this with hairdressers.
Top line – their research showed that salons were a
place where their identifi ed population was spending
time. Knowing this, they trained up hairdressers,
used appointment cards, stickers on mirrors etc.
Hannah Gagen | Patient Engagement & Ext. Affairs
Manager | IBIF | Boehringer Ingelheim Ltd
Conclusion and recommendations
• This paper aimed to hit home simple messages
drawn directly from patients and experts.
• The NHS and partner agencies will need to develop,
review and audit programmes to support and
empower people with diabetes, which include:
• Behavioural change programmes.
• Structured education programmes that don’t
require people to take long periods of time off
work.
• The provision of consistent information for the
better management of diabetes.
• Effective care plans placing an emphasis on
the ongoing discussions between practitioners,
professionals and patients.
• Patient-held accessible records.
• The use of new technologies, including the
Internet.
9/14
Survey methodology
The Diabetes.co.uk 2013 survey set out to build up a
detailed profi le of people with diabetes in the UK. The
survey was opened out to all age groups and those
who had fi rst-hand experience with people who have
diabetes, e.g. parents and carers. With 52 questions
covering a variety of diabetes topics, and over 20,000
responses, the survey presents one of the largest
studies to date.
Survey structure
The Diabetes.co.uk survey features 52 questions
covering profi ling questions focusing on demographic
data of the consumer (date of birth, ag e, gender,
residency and ethnicity), diabetes profi ling (type, regime
etc.), blood testing, glucose meter usage, hypos and
patient care.
Survey delivery
The Diabetes.co.uk 2013 survey was launched via
Diabetes.co.uk’s bi-weekly email newsletter and social
media channels.
Survey results
The survey was completed by 20,000 unique
respondents within the fi rst four weeks of being
launched and offers a wealth of data about patients
with diabetes.
The results presented in this report are based on the
initial 20,000 respondents and provide a summary of
fi ndings, survey questions and responses, in addition
to examples of opportunities for undertaking a deeper
analysis of survey results, including the breakdown
of prescriptions between type 1 and type 2 diabetic
patients.
The following appendix includes data obtained from
the study.
REFERENCES
INTERVIEWS
1. https://www.gov.uk/government/uploads/system/uploads/attachment_data/fi le/214943/Safe-care-of-people-with-type-1-diabetes.pdf (Government Letter) 4th Feb 2013
2. Diabetes UK position statement on access to test strips for patients with type 1 diabetes http://www.diabetes.org.uk/upload/Position%20statements/SMBGType1positionstatement.pdf
3. Cardiovascular - type 2 diabetes. Data focused commentary: Type 2 diabetes: Self-monitoring blood glucose. National Prescribing Centre (2012)
4. Self-monitoring of blood glucose levels for adults with Type 2 diabetes, April 2013, Diabetes UK
5. NICE. Type 1 diabetes: diagnosis and management of type 1 diabetes in adults. Clinical guideline 15.
6. Kanavos, P., Van Den Aardweg, S. and Schurer, W. 2012. Diabetes expenditure, burden of disease and management in 5 EU countries. London School of Economics Health.
Miles Baker, Senior Diabetes Specialist, AstraZeneca
John Cartwright, Urgent Care Lead, Barnsley Hospital NHS Foundation
Hannah Gagen, Patient Engagement & External Affairs Manager, Boehringer Ingelheim Ltd.
Thomas Sargant, Territory Account Specialist, Bristol-Myers Squibb
Robert T. Kocembo, OD, CDE, FCOVD, Board Certifi ed Diabetes Educator, Diplomate of the American Board of Optometry
Chris Chapman, National Sales Manager, GlucoRx
Michael Connellan, Senior Media Manager, JDRF
Martin Lambert, Senior Marketing Manager UK & Ireland, Johnson & Johnson
Partha Kar, Clinical Director, Diabetes & Endocrinology, Portsmouth Hospitals NHS Trust
Angela Magny, Public Affairs Manager, Roche Diabetes Care
Jason Lovatt, Brand Lead, Blood Glucose Monitoring, Sanofi
Chris Barker, Managing Director, Spirit Healthcare Ltd.
Further information
For more information about the Diabetes.co.uk 2013
survey or to discuss new survey opportunities tailored to
your needs, please contact Diabetes.co.uk
Tel: 024 76 712 201
Email: [email protected]
10/14
APPENDIXFear of hypos.
Incretin mimetics (Byetta, Victoza, Bydureon)PumpInjectionsTabletsI don't take medication for my DiabetesWHICH MEDICATIONS DO YOU TAKE SPECIFICALLY FOR YOUR DIABETES?
Type 1 (35 Didn’t take medication) Type 26150 Injections 8584 Tablets
52 Incertin765 Tablets1134 Pump 1175 didn’t take medication1059 Incretin2828 Injections
HOW OFTEN DO YOU TEND TO GET HYPOS (UNDER 4MMOL)?
Type 1 Type 2
0 1000 2000 3000 4000 5000 6000
Never
Once a year
Once every few months
Monthly
At least once a week
Every few days
Daily
0 500 1000 1500 2000 2500
HOW OFTEN DO YOU TEND TO HAVE A SERIOUS HYPO?
Type 1 Type 2
0 500 1000 1500 2000 2500
Never
Less than once a year
Once a year
Every few months
Monthly
Weekly
0 500 1000 1500 2000 2500
HOW MUCH DO YOU WORRY ABOUT HAVING HYPOS?
Type 1 Type 2
Strong anxiety
Some anxiety
Not at all46%
46%
8%
55%
22%23%
11/14
DO YOU INTENTIONALLY RUN YOUR BLODD SUGAR LEVELS HIGH FOR ANY OF THE FOLLOWING ACTIVITIES?
Type 1 Type 2
Other
Sleeping
Shopping
Sport/ Exercise
Driving
0 500 1000 1500 2000 2500 0 100 200 300 400 500 600 700 800
DID YOU BUY THE METER OR DID YOU RECEIVE IT FREE?
0
20
40
60
80
100
I received it free
I bought it
Blood Glucose Monitors
HOW MANY BLOOD GLUCOSE METERS DO YOU REGULARLY USE?
Three or more
Two
One
76.4%21.3%
2.3%
12/14
IF YOU HAD TO BUY YOUR OWN METER, WHERE DID YOU MAKE THE PURCHASE ?
0 500 1000 1500 2000 2500
Other
Other online shop
Diabetes.co.uk shop
Directly from the manufacturer
High street pharmacy
WHICH METER WERE YOU GIVEN BY YOUR HCP?
Glucemen
DiagnoSys True Track
Bayer
Accu-Check
Abbott
True Track Smart System
Sanofi iBG Star
Other
Medisense Optium
Lifescan
Un-answered / Blank 17528
0
200
400
600
800
1000
APPENDIX
Blood glucose monitors
HOW DID YOU GET THE FREE METER?
13/14
APPENDIX
Access to test strips
Type 1 Type 2
0 200 400 600 800 1000 12000 100 200 300 400 500 600 700 800
More than 6 months ago
In the last 6 months
In the last month
In the last week
HOW MUCH DO YOU WORRY ABOUT HAVING YOUR ACCESS TO TEST STRIPS RESTRICTED?
HOW RECENTLY WAS THIS?
HAVE YOU EVER HAD YOUR PRESCRIPTION FOR BLOOD TESTING SUPPLIES REDUCED,DENIED OR WITHDRAWN BY YOUR HEALTH CARE TEAM?
14/14
APPENDIX
Medication and related complications
0 2000 4000 6000 8000 10000Phosphodiesterase-5 (medication for sexual dysfunction)
Anti-inflammatory
Painkillers
Ace inhibitors
Sleeping tablets
Anti-anxiety medication
Anti-depressants
Beta-blockers
Statins
* Multiple answers were provided by the majority of respondents
WHICH MEDICATIONS DO YOU TAKE SPECIFICALLY FOR YOUR DIABETES?*
DO YOU REGULARLY TAKE ANY OF THE FOLLOWING MEDICATIONS?
DO YOU HAVE ANY OF THE FOLLOWING DIABETES RELATED COMPLICATIONS?
0 200 400 600 800 1000 1200 0 500 1000 1500 2000 2500
Type 1 Type 2
Charcot foot
Foot ulcers
Foot or lower leg amputations
Heart disease
Nephropathy (Kidney disease)
Neuropathy (Nerve damage)
Retinopathy (Retinal damage)
Sexual dysfunction
Stroke
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