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

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.

Public Affairs Challenge

To get the reimbursement for tafamidis in a very difficult conjuncture…

Public Affairs Challenge

And now what should we do?...

Step 1

Study

Investigate

Intelligence

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.

Step 2: Definition of the strategy

How is the situation and where do we stand? How may we succeed?

Step 2: Definition of the strategy

Who are our allies?

Step 2: Definition of the strategy

And our antagonists?

Step 2: Definition of the strategy

And who holds to key?

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

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).

Step 3: News articles

Step 3: News articles

Step 3: Family and patients event

Step 3: Clinical session

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.

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)

Step 3: Actions

Media push up

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

Step 4: Results and achievements

Reimbursement achieved

Step 4: Results and achievements

Client happy!

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.

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”

Conclusions and learnings

Conclusions and learnings

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

João Duarte

Inforpress Corporate & Public Affairs Account Manager

jduarte@inforpress.com | 96 346 1296

Thank you!