XII Regional EACD Lisbon Debate over the topic "Public Affairs: enhancing the engagement with EU Institutions", 24th october 2013, presentation by João Duarte, Inforpress

1. Case study “A new hope for a hundred years disease: A Public Affairs
challenge to engage all the key players”
João Duarte
Inforpress Corporate & Public Affairs Account Manager
jduarte@inforpress.com | 96 346 1296

2. Context
Paramyloidosis, known as the “Little Feet Disease”, is a rare, hereditary and
incurable disease. It starts in adulthood, around 30 years of age. It begins in
the lower limbs, but progresses and starts ascending, ultimately affecting
the sensitivity and motor skills of all the body. Without treatment it is
usually fatal after about 11 years of symptoms and progressive disability.
There are about 10.000 patients worldwide and Portugal is the country
with the highest number of patients: 1500 and annually there are around
100 new cases. The disease affects more than 600 families, mostly coming
from the North Coast of the Country (Póvoa do Varzim). Hospital de Santo
António, in Oporto, is the world's leading center for diagnosis and
treatment of the condition.
For the last 50 years the only alternative therapy was the liver transplant.
FoldRx, an American pharmaceutical company, developed the first oral
therapy (tafamidis). The new drug registered 60% of clinical efficacy on
stopping the progression of the disease.

3. Public Affairs Challenge
To get the reimbursement for tafamidis in a very difficult conjuncture…

4. Public Affairs Challenge
And now what should we do?...

5. Step 1
Study Investigate Intelligence

6. Step 2: Definition of the strategy
Strategy (Greek "στρατηγία"—stratēgia, "art of troop leader; office of general, command,
generalship") is a high level plan to achieve one or more goals under conditions of uncertainty.
Strategy is important because the resources available to achieve these goals are usually limited.
Strategy is also about attaining and maintaining a position of advantage over adversaries
through the successive exploitation of known or emergent possibilities, rather than committing
to any specific fixed plan designed at the outset.

7. Step 2: Definition of the strategy
How is the situation and where do we stand?
How may we succeed?

8. Step 2: Definition of the strategy
Who are our allies?

9. Step 2: Definition of the strategy
And our antagonists?

10. Step 2: Definition of the strategy
And who holds to key?

11. Step 3: Definition of the spokespersons
Media: physicians and patients
Minister of Health and Hospital Administrations: FoldRx Management
Parliamentarians: Clinical investigators and President of Patient Association

12. Step 3: Definition of key messages and actions
Media (public opinion): emotional communication
- Clinical trial results - "New hope for Little Feet Disease “
- Portugal as world center of investigation and treatment for Paramyloidosis
- Generate debate on public opinion
- Collection of signatures for implementation of "1rst National Day Against Paramyloidosis“
- Specific and targeted events:
- "Scientific Session at the Hospital de Santo António - Past, Present and Future: New
Discoveries in a centenary disease"
- "Event for patients and families in CEAP - Discovering the Future"
- Launch Research Fellowship, with the support of the Portuguese Society of Neurology, to
support research in the area of ​​Paramyloidosis (“Corino de Andrade” research bursary).

13. Step 3: News articles

14. Step 3: News articles

15. Step 3: Family and patients event

16. Step 3: Clinical session

17. Step 3: Political commitment
“Paramyloidosis is a highly disabling disease. I know
the reality of patients and the limitations that
confront health professionals in this clinical field. I
believe this drug is the best news of the last 20 years
for these patients. I can guarantee that the Ministry
of Health and the competent authorities are closely
monitoring the situation. I can ensure the willingness
of the Ministry of Health to continue to review and
monitor the progress of scientific and technical data
of the drug“
Manuel Pizarro, Secretary State of Health.

18. Step 3: Definition of key messages and actions
Public affairs: rational communication
- Infarmed (cost effectiveness of tafamidis – Savings for the
Health Minister)
- Hospital’s Administrations (are your patients less important then
the ones from the hospital next door?)
-Minister of Health (why should Portuguese patients living here
receive a different treatment then the ones living in France? Isn’t
Portugal part of the European Community? Is there any medical
or economic criteria to defend why a person with cardiovascular
disease caused by excessive smoking should have the right to
treatments, free of costs, while a patient with Paramyloidosis,
that hasn’t done anything wrong to have this disease, won’t
receive the most effective treatment?)
- Parliament (key selection: parlamentarians from the northern
region of Portugal; with an academic or professional background
in healthcare)

19. Step 3: Actions
Media push up

20. Step 4: Results and achievements
Excellence Award for the best National and Regional Campaign hosted in
Portugal in 2010
Shortlisted as one of the best four European healthcare campaigns in
2010
Certificate of Excellence by Sabre Awards

21. Step 4: Results and achievements
Reimbursement achieved

22. Step 4: Results and achievements
Client happy!

23. Some facts and figures
- Presence of 60 health professionals, 10 health economists, 5
patients’ testimonies, 15 Hospital entities and 25 health
authorities in the clinical session
-More than 200 patients and family in the event.
- More than 150 news articles in television, radio and press.
- Meetings scheduled with Hospital CEO’s, Members of the
Parliament Health Commission, representatives of Infarmed and
the Ministry of Health.

24. Conclusions and learnings
“The ten rules of effective communication are a
necessary first step to words that work, but they are
hardly sufficient. Communicators also need to put
themselves in the mind-set of their audience… what
social status people occupy… what their level of
education is… what gender they are. All these things
affect how people will receive a message”.
Dr. Frank Luntz in “Words that Work – It’s not what you say, it’s what
people hear”

25. Conclusions and learnings

26. Conclusions and learnings

27. Context
“Os esforços que fazem os grupos de interesse na tentativa de
influenciar as decisões dos governos é uma conquista das democracias
modernas. Os profissionais de lobby e public affairs podem trazer um
manancial incalculável de informação aos processos de decisão
pública”.
Relatório OCDE: “Lobbyists, Governments and Public Trust”, 2008
“Os grupos de interesse desempenham um papel essencial no
diálogo aberto e pluralista em que se baseia um regime democrático
e constituem uma importante fonte de informação para os
deputados na actividade do exercício do seu mandato”.
Relatório do Parlamento Europeu sobre o desempenho das
actividades dos grupos de interesse nas instituições europeias, 2008

28. João Duarte
Inforpress Corporate & Public Affairs Account Manager
jduarte@inforpress.com | 96 346 1296
Thank you!