F R O M I N S I G H T T O I M P A C T O T T A W A T O R O N T O C A L G A R Y V I C T O R I A E D M O N T O N

Presentation to aHUS Canada April 6, 2013

Challenge for Rare Disease Do Canadians want to provide the best possible access to therapies for rare disease? 3

Our Current Status In Canada: Historically a province-by province approach Result? –Patchwork of services –Individualized approval process in order to gain access –Inconsistency across provinces –Trying to take a pan-Canadian approach 4 Every OECD country has a rare disease strategy both for approving and paying for therapies except for Canada.

Perspective on Spending in Canada million Canadians are living with rare disorders. The cost is not heavy on healthcare spending but rather on the individual = Ongoing tensions

Perspective on Spending in Ontario 6 $44.77 billion total spending on health care in Ontario, $3.45 billion on prescription drugs

Understanding the Life of a Legislator 7:00am - 9:00am Meetings w stakeholders, events and/or briefings with Ministry, bureaucracy and staff, what’s the headline of the day 9:00am - 10:30amHouse duty and committee dealing with legislation 10:30am - 12:00pmQuestion Period followed by media availability 12:00pm - 3:00pmCabinet meetings, caucus meetings, stakeholder meetings, meetings with Ministry, staff and stakeholders 3:00pm - 6:00pmHouse is sitting – Ministers are supposed to be in the house for House business (introduction of bills; debates; etc) but may ask for leave to attend events/ meetings 6:00pm - 10:00pmEvents, receptions with stakeholders 7 No single elected official can stay on top of all the issues that come before the Legislature all the time

Getting Started Who are you? What are you asking? Why are you asking? Where should you go first? When do you ask? 8

TIPS: Engaging with Elected Officials Build relationships Bring solutions Educate Rally your forces All politics are local Approach legislators strategically Make sure message is simple and concise Tailor your message and keep it positive Know your opposition Form alliances Timing is key Choose your battles carefully 9 REMEMBER

TIPS for a Successful Meeting Be punctual Dress appropriately Prepare: Know what you are going to say. Have your materials prepared as a “leave behind”. Research the politician’s background, his/her interests and his/her connection to your issue. Rehearse: If you are going in as a group, meet before hand to discuss who is going to say what and review potential questions and answers. Be brief Work with staff: Brief the politician’s assistant before the meeting Leave behind material: 1 page briefing note, fact sheet, etc. Make sure that the handout has a specific “ask” Always follow up a meeting with a personal “thank you” note 10 DO

TIPS for a Successful Meeting Threaten Argue Offer votes in exchange for support Waste time with small talk Discuss political fundraising Raise questions that you are not prepared to answer Never stretch the truth or you risk losing credibility - stick to the facts 11 DON’T

12 But there is still a long road ahead to make this possible…

13 Contact Ottawa 50 O’Connor Street, Suite 901 Ottawa, Ontario K1P 6L2 Telephone: 1 (613) Toronto 310 Front Street West, Suite 620 Toronto, Ontario M5V 3B5 Telephone: 1 (416) Calgary 633-6th Avenue South West, Suite 1000 Calgary, Alberta T2P 2Y5 Telephone: 1 (403) Victoria 1070 Douglas Street, Suite 360 Victoria, BC V8W 2C4 Telephone: 1 (250) Edmonton Jasper Avenue, Suite 2020 Edmonton, AB T5J 3R8 Telephone: 1 (780) Affiliates Montreal & Quebec City Telephone: 1 (514)