The Economic Impact of MULTIPLE SCLEROSIS

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The Economic ImpactofMULTIPLE SCLEROSIS
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Why should we measure costs?
There are a lot of things I could use to help me
but it would cost me too much. I only have the
pension so I do what I can myself
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What happens if we dont measure costs?
someone else does
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What costs are measured incost of illness
studies
Borne by government
?
public payer perspective
Borne by society as a whole
?
societal perspective
Our out-of-pocket medical expenses last year
were something like 3,000
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But what about the costs to people with MS and
their families?
Although we keep a very brave face, and have
changed our lifestyle, we are at a stage where we
cant cut costs any more.
I feel uncomfortable spending money on myself,
even on little things, when I am not earning and
things are so tight . I feel awful that my
children are being denied
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Summary

• Look at the costs involved in MS

• Compare costs of MS in Australia, UK, Germany
• Sweden

• Discuss our pilot study on extra costs borne
  by people with MS and their families

• Examine burden of care implications

I would use house cleaning, food preparation,
relationship counselling and legal advice - if I
could afford them!
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What are the costs of MS made up of?
DIRECT COSTS
INFORMAL COSTS
INDIRECT COSTS
INTANGIBLE COSTS
TOTAL COSTS




Inpatient care. Ambulatory care. Drugs. Services
- home care - child care - day
care. Adaptations.
Care provided by family and friends.
Sick leave. Early retirement. Premature mortality.
Due to pain, grief, anxiety and social handicap.
My Government core package includes personal
care, housework, gardening, meals on wheels 5
days a week. On weekends I must rely on
neighbours, or go to a café, or go hungry!
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What are the costs of MS made up of?
DIRECT COSTS
INFORMAL COSTS
INDIRECT COSTS
INTANGIBLE COSTS
TOTAL COSTS




IMPACT QUALITY OF LIFE
GOVERNMENT
FAMILY

INCOME
LIFESTYLE
MS has taken away our dreams, hopes wishes. To
stress and not do a weekly food shop because the
money has gone on other things, mainly medical
costs, is disgraceful and very belittling!
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International comparisons, UK (1999), Germany
(1999), Sweden (1998), Australia (2000)
Challenges in making comparisons
between International studies

• Differences in cost calculation methods between
  studies (although standards are being
  developed).

• Differences in dates of studies - new
  therapies (eg interferon) - inflation
  (Adjusted to CPI 2002 (ABS)

• Exchange rates v Buying power Adjusted to PPP
  US (OECD)

• Data across countries use purchase power.

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INDIRECT COSTSLoss of productivity (income)
PPP. (US)
It is difficult when you do not know what the
future holds and how it will impact on you. This
is what I find hard. What is in store for me and
my partner?
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DIRECT COSTSHospitalisation ambulatory care
drugs social services adaptations
PPP (US)
How do you embrace all life has to offer in case
you cannot in the future and yet save/plan, in
case life becomes less than it is now?
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DIRECT COSTS per PwMSUK v Germany v
Sweden (average total patients)
PPP (US)
My financial position in the future is of
enormous concern fatigue, finances and career
are my greatest concerns.
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INFORMAL COSTS Care provided by family friends
PPP (US)
I really hate what it has done to me my
family. Loss of self-esteem, uselessness, not
pulling your weight - are everyday feelings. It
is very wearing.
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Economic DistressCutbacks on Expenditure
ITEM PERCENTAGE REPORTING
CUTBACKS
Food 32.7
Clothing 62.6
Entertainment 73.8
Restaurant Meals 71.7
Holidays 76.6
Childrens Activities 34.0
School Fees 25.0
Visits to friends/ family
39.6
Gifts 59.4
I think chronic illness is isolating - however
the consequent poverty maximises it!
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Economic DistressCutbacks on Expenditure
ITEM PERCENTAGE REPORTING
CUTBACKS
Computers, Software 52.9
Electrical Goods 50.9
Replacing Furniture 59.0
Hairdressing/ Toiletries 41.9
Books/ Magazines 49.1
Source M De Judicibus Economic Impact of
MS Australian Study - Deakin University 2000
Attending Sporting Events 49.5
Tobacco 22.7
Alcohol 27.4
We have not had a holiday in 10 years. I buy my
clothes at op shops. When we have to go somewhere
special, my husband borrows the boys shoes.
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Economic Pressure Scale (0-50)
Source M De Judicibus Economic Impact of
MS Australian Study - Deakin University 2000
SCORE Male 18.3 Female
19.4 Urban 17.8 Rural
22.1 TOTAL 19.2
O no pressure 50 extreme pressure
The financial burden has been crippling harder
to cope with than the disease
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Conclusions

• Calculating costs vital

• Insights internationally - countries do it
  differently

• Studies must consider the MS penalty -
  out of pocket expenses.

• Quality of life costs - people with MS
  - the whole family.

• Costs to the Community - costs v research.

• Data across countries use purchase power

You are reminded of the financial loss of MS
every time you visit your friends - things you
aspire to but can no longer think about. It is
like a constant kick in the teeth!
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Acknowledgements

• Dr. K Tansourns (Neurosciences Victoria)
• Dr. M De Judicibus (Deakin University)
• Quotes Participants in The Financial Impact
  of MS Study Ausralia

We Australians are extremely fortunate in this
level of medical care - in this country. The MS
Society is an excellent source of support at all
times!