The Economic Impact of MULTIPLE SCLEROSIS

1. The Economic ImpactofMULTIPLE SCLEROSIS

2. Who needs to know? Why do they need to know? a:PolicyMakers ResourceAllocation b:Special interest groups - patients, charities Influence resource allocation. c:Healthcare providers Administer government policy. d:Drug and technology developers Evaluate government effectiveness. e:Citizens Research investment priorities. 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”

3. “The study showed that preventative treatment with interferon beta in patients with multiple sclerosismay not be justified from a health-economic perspective, although interferon beta is associated with an improved effectiveness compared to no preventative treatment.” Nuijten MJ, Hutton J, Cost-effectiveness analysis of interferon beta in multiple sclerosis: a Markov process analysis. Value Health 2002 5(1): 44-54 What happens if we don’t measure costs? ………… someone else does

4. What costs are measured in‘cost of illness’ studies: Borne by government  publicpayerperspective Borne by society as a whole  societal perspective “Our out-of-pocket medical expenses last year were something like $3,000”

5. 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 can’t 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”

6. 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!”

7. What are the costs of MS made up of? DIRECTCOSTS INFORMALCOSTS INDIRECTCOSTS INTANGIBLECOSTS TOTALCOSTS + + + = Inpatient care. Ambulatory care. Drugs. Services: - home care - child care - day care. Adaptations. Careprovidedbyfamilyandfriends. Sickleave. Earlyretirement. Prematuremortality. Duetopain, grief, anxietyandsocialhandicap. “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!”

8. What are the costs of MS made up of? DIRECTCOSTS INFORMAL COSTS INDIRECT COSTS INTANGIBLE COSTS TOTAL COSTS + + + = IMPACTQUALITYOFLIFE 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!”

9. 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 indatesofstudies- new therapies (eg interferon) - inflation (Adjusted to CPI 2002 (ABS) • ExchangeratesvBuyingpower …AdjustedtoPPPUS$ (OECD) • Dataacrosscountriesuse$purchasepower.

10. INDIRECT COSTS:Loss 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?”

11. DIRECT COSTS:Hospitalisation; 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?”

12. 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.”

13. INFORMALCOSTS 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.”

14. Economic DistressCutbacks on Expenditure ITEM PERCENTAGE REPORTING CUTBACKS Food 32.7 Clothing 62.6 Entertainment 73.8 Restaurant Meals 71.7 Holidays 76.6 Children’s 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!”

15. 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.”

16. 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”

17. 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!”

18. 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!”