Rare Disease Day 2015 Conference Day 3: Alexandra Kyriakos

1. Effective Patient Advocacy:
Problem + Solution =
Collaboration
Alexandra Kyriakos, 3Sixty Public Affairs
Rare Disease Day Conference 2015
March 7

2. Agenda
1) What is advocacy?
2) Political and policy context

3. 36
Advocacy is…
Source: Nanos Research Survey
“…the ability to
find in any given
situation,
all the available
means of
persuasion”
- Aristotle

4. Knowing your issue/story inside out
Step 1: Research
• Health care issues can be complicated and orphan drug
issues more so
• What are other jurisdictions doing
• Problem AND solution
• Does solution solve government problem
Step 2: Develop Strategy and Tools
• Identify obtainable objective(s)
• Map decision-makers/influencers and try to find supporters
(champions), establish coalition if possible
• Prepare tools – briefing note, fact sheet, backgrounder, letter
(s), summary of relevant research, letters of support etc.
Step 3: Implement Strategy
• Engagement – get out there…!
• Strategy assessment / feedback and recalibration
4

5. Politics
Policy
Process
• Relationships
• Political capital
• Fiscal policy
• Health policy
• Intergovernmental
• Drug reimbursement
• Regulatory reviews
• HTA reviews
• Negotiations
• Listing decisions
5
Levels of engagement and advocacy…

6. Drug Development
Health Canada
Review
Patented Medicines
Prices Review Board
Health Technology
Assessment
Hospitals
Patient Access
Private Drug Plans
Provincial Drug
Plans
In advocating for
treatments, you need
to know WHAT you
are influencing…
• Where do patients
and caregivers fit?
• What are your main
issues?

7. How does your issue align with government
platform, policy and priorities – health,
innovation, fiscal?
• Mandate letter (from PM / Premiers to ministers)
• Speech from Throne (opens parliament / sets agenda)
• Budget (finances the government’s agenda)
• Legislation (empowers government)
• Government-sponsored
• Private members’ legislation
• Regulations (operationalizes government)
• Cabinet approval with public comment period
• Policy statements and guidelines
7
ELECTION
PLATFORMS
COMMS

8. 8
Challenging fiscal situations…
FED BC AB SK MB ON QC NB NS PE NL
Deficit
($ millions)
-2,900 879 465 71 -402 -12,500 -2,345 -377 -274 -45 -916
Debt
($ billions)
615.8 39.8 -6.8 5.0 18.6 287.3 191.2 12.2 15.0 2.2 9.8
2014-2015f Deficit and Debt
RBC Economics – Canadian Federal and Provincial Fiscal Tables (Feb. 24, 2015)
Updated fin.
Chart below
Also, could
add more
recent
headlines if
desired or
necessary (to
replace older
ones) - MP

9. Some best practices
• Educating and networking with other patients and
caregivers about opportunities
• Collecting data – and sharing it!
• Keeping things simple – and realistic
• Looking for all opportunities to make your case
9

10. Best practices for meetings
10
Ask how much time you have and plan to talk for half of it
(don’t take up all the air time)
If you don’t know the answer to a question, say so, but
offer to get an answer
Ask for feedback and direction - does your message
resonate? Who else should you meet?
At the appropriate time, thank the host, summarize any
follow-up steps and leave
Follow up! Send a thank you, and keep them updated on
your meetings with other government officials and staff

11. Can and often need to go beyond official channels –
becoming an effective advocate
11
Understand the complex dynamics surrounding a decision / influencers
More than simply the right arguments at the right time to the right people
Demands creativity, patience and collaboration
Long term perspective needed, but celebrate the wins along the way
Planning your approach!

12. Discussion
12
If you have questions, ask them,
you’ll feel better at your meeting