Table A1: Trade-Off Scenarios
1. Would you rather spend the same amount of healthcare funds on: /- 1 Canadian with a rare disease whose treatment costs 100 times as much as the average Canadians' healthcare costs.
- 100 Canadians, without a rare disease, who have average healthcare costs.
2. Would you rather fund a drug for a: /
- life-threatening rare disease which has very few studies, indicating it may not be very effective (not very certain the drug will prolong life).
- Non-life threatening , but painful common disease which has many studies showing that it is very effective (very certain the drug will reduce symptoms).
3. Would you rather spend extra funds for the drug treatment of: /
- 100 people with a rare condition.
- 100 people with a common condition.
4. Would you rather spend extra funds for the drug treatment of: /
- 400 people with a common condition.
- 100 people with a rare condition.
5. Would you rather spend $8 million annually for drug treatment that will: /
- Extend the life of 30 people who have a rare disease.
- Extend the life of 3000 people who have a common disease.
6. Would you rather spend $8 million annually for drug treatment that will improve the quality of life of: /
- 30 people with a rare condition with NO other treatment options.
- 3000 people with a common condition and with FEW other treatment options.
7. Would you rather fund a new research program focusing on developing new treatments for a: /
- common condition.
- rare condition.
8. Would you rather fund a new drug treatment, at a cost of $95 million annually to treat: /
- 250,000 patients with a common fatal disease to extend their life.
- 620 patients with a rare fatal disease to extend their life.
9. Would you rather fund a new drug treatment at a cost of $95 million annually to improve the quality of life, but not duration of life of: /
- 250,000 Canadians with a fatal disease of old age.
- 620 Canadians with a fatal disease of childhood.
10. Would you rather spend $600,000 annually: /
- For a drug treatment to extend the life of 2 people with a rare disease.
- Increasing public nursing home beds by 10 people.
11. Would you rather spend $50 million annually to fund /
- Education costs for an additional 5000 full-time university students in your province each year.
- drug treatment that will improve the quality of life and prolong the life of 150 people with a rare disease with no other treatment option.
12. Would you rather fund: /
- drug treatment at a cost of $20 million annually which will improve the quality of life of 60 people suffering from a rare disease, which affects multiple organs and joints.
- the construction of a new community center at a one-time cost of $20 million to add recreation services to your community.
13. Would you rather spend $400,000 annually to fund: /
- Drug treatment for one person suffering from a rare disease, which will improve quality and quantity of life and for which there are no other treatment options.
- Smoking cessation medications (to help people quit smoking, improve their health and prevent illness) for 2500 people.
Table A2: Respondent Characteristics (n = 2,005)
Parameter / Level / Percent (n) / Mean (SD)Age / 41.7 (14.9)
Sex (% Female) / 53.2 (1067)
Have Rare Disease / 4.24 (85)
Family or Friend with Rare Disease / 25.7 (516)
Health Status / Poor / 5.4 (109)
Fair / 18.4 (369)
Good / 38.1 (764)
very good / 27.8 (557)
Excellent / 10.3 (206)
Income / 0 -19,999 / 8.1 (162)
20,000-34 / 14.2 (284)
35,000-49 / 14.8 (296)
50,000-64 / 13.0 (260)
65,000-79 / 12.4 (248)
80,000-99 / 10.8 (216)
>100,000 / 16.5 (330)
Not_Ans / 10.4 (209)
Education / Elementary / 0.6 (12)
High School / 28.5 (571)
Some Post-Secondary / 21.2 (425)
Technical / 16.3 (327)
Bachelor / 23.3 (468)
Masters or Doctorate / 8.6 (173)
Province / Nunavut / 0.05 (1)
Alberta / 10.3 (206)
British Columbia / 25.0 (502)
Manitoba / 4.6 (92)
Nova Scotia / 4.2(85)
Ontario / 47.4 (950)
New Brunswick / 3.2 (65)
Newfoundland / 1.8 (36)
Saskatchewan / 2.8 (57)
Prince Edward Island / 0.4 (8)
Yukon / 0.1 (2)