Building a stronger voice for IPF

Italian Parliament Project Report

Dear all,

we would like to draw your attention to the final report of the Italian Event organised by "AMA fuori dal buio" in Rome on March 1st, 2016.

As you probably remember, the event was designed to present the European IPF Patient Charter in the Italian national parliament. It was aimed at initiating a dialogue with policy-makers on how to address existing gaps faced by IPF patients to access optimal care, with a focus on specific regional challenges. By bringing together policy-makers and relevant stakeholders active in the health policy and medical field, we wanted to urge Ministries of Health and Research and/or Regional Governments to address the barriers to IPF care at a national level.

As you will read in this Report, we were really satisfied with the results of this project, and we'd like to share them with you. Our hope is that the Italian experience will be useful for organising similar events in the future in other countries as well.

Best regards to all of you.

AMA Fuori dal buio Team

Right to Diagnosis and Care of Patients with
Idiopathic Pulmonary Fibrosis (IPF)

Institutional Event - Rome, March 1st 2016

 

The Starting Point

From European to Italian Parliament

Following the successful launch of the European IPF Charter at the European Parliament, hold in September 2014, patient organizations have identified as a priority the implementation of pilot projects at a national level to encourage political action aimed at solving local support issues of patients with IPF.
Italy has been proposed as a pilot country due to the active participation of the Italian MEPs to activities related to the launch of the European IPF Charter and the submission of a Written
Declaration which aims to encourage European and national policy makers to take action to improve and speed up access to care for patient with IPF.

Objectives

The main objectives of the event were:

  • To present at the Italian National Parliament the European IPF Patient Charter and initiate a dialogue with policy-makers on how to address the existing gaps faced by IPF patients to access optimal care in Italy, with a focus on regional health inequalities;
  • To support the requests of the European IPF Patient Charter through the involvement of a large number of decision-makers, patient associations and Italian Scientific Societies;
  • To build a network of institutional relations through which it is possible to develop engagement activities on the issues that come out from the event.

Institutional Event

The event, entitled “Right to Diagnosis and Care of Patients with Idiopathic Pulmonary Fibrosis. The European IPF Patient Charter and Recognition of the IPF as a Rare Disease in all Italians Regions to Overcome the Differences in Treatment” was held on March 1st in Rome (10.30 – 13.00) at the Library of the Chamber of Deputies.

The event was organized under the patronage of:

  • Chamber of Deputies
  • Ministry of Health
  • Lazio Region
  • CNAI – Consociazione Nazionale delle Associazioni Infermiere/i
  • ORPHANET – Il portale delle malattie rare e dei farmaci orfani
  • FIASO – Federazione Italiana Aziende Sanitarie e Ospedaliere
  • EU-IPFF – European Idiopathic Pulmonary Fibrosis and Related Disorders Federation
  • SIMER – Società Italiana di Medicina Respiratoria
  • The event was also supported by Centre for Rare Diseases - National Institute of Health (ISS)

Institutional Event

MPs Engagement

In order to strengthen the engagement of Italian MPs on IPF and encourage them to sign the European IPF Patient Charter, each of them, 945 among Deputies and Senators, received a written invitation letter and an information leaflet on IPF (Main contents of the leaflet: What is IPF, how to make the right diagnosis, which are the available treatments, European IPF Charter, requests to Italian decision-makers). For some Members of Parliament, more engaged on the issue of rare diseases, we have preferred a direct engagement with dedicated one to one meetings.

We organized meetings with:

  • Emilia Grazia De Biasi (PD), Pres. Health Committee – Senate Paola Taverna (M5S), Health Committee – Senate
  • Annalisa Silvestro (PD), Health Committee – Senate
  • Manuela Granaiola (PD), Health Committee - Senate
  • Luigi D’Ambrosio Lettieri (CoR), Health Committee - Senate
  • Antonio De Poli (NCD-UDC), Labour Committee – Senate
  • Lucio Barani (GAL), Budget Committee – Senate
  • Mario Marazzitti (PI), Pres. , Social Affairs Committee - Chamber of Deputies Paola Binetti (SC), Social Affairs Committee - Chamber of Deputies
  • Maino Marchi (PD), Budget Committee -Chamber of Deputies
  • Gian Luigi Gigli (PI), the Commission for Regional Affairs - Double Of Deputies Giovanni Monchiero (SC), Social Affairs Committee - Chamber of
  • Deputies Donata Lenzi (PD), Social Affairs Committee - Chamber of Deputies
  • Silvia Giordano (M5S), Secretary, Social Affairs Committee - Chamber of Deputies

Institutional Event

Speakers

Speakers of the event were:

  • Paola Binetti,
  • President of the Parliamentary Intergroup for Rare Diseases Carlo Vancheri, Professor at University of Catania
  • Domenica Taruscio,
  • Director of the National Centre for Rare Diseases - National Institute of Health (ISS)
  • Giovanni Monchiero,
  • Italian Member of Parliament, Member of the XII Social Affairs Commission of the Chamber of Deputies
  • Luca Richeldi,
  • Professor at Southampton University
  • Rosalba Mele,
  • President of Patient Association AMA fuori dal buio
  • Fabrizio Luppi,
  • Director of the Center for Rare Lung Diseases, University of Modena
  • Antonio Saitta,
  • Health Councillor for Piemonte Region (video message)
  • Patient of AMA fuori dal buio support Group

Institutional Event

Attendees

The event was attended by almost 35 relevant stakeholders among which patient associations, scientific societies and high level policy-makers who are active in the health policy and medical field.

The Patient Associations that attended the event were:

  • AIDO – Associazione Italiana Donatori di Organi Tessuti e Cellule
  • Respirare Onlus di Catania
  • Un respiro di speranza – Associazione di pazienti Onlus di Roma
  • Unione Trapiantati Polmone di Padova
  • Un Soffio di Speranza – Il Sogno di Emanuela Onlus
  • AMMP - Associazione Morgagni Malattie Polmonari
  • FIDIC Volontariato Lazio

Media Outreach

Media relation activities included:

  • Set up of a comprehensive press kit
  • Definition of an ad hoc media list
  • Invitation to attend the event to a targeted media list
  • Send out of electronical press kit to a wider numbers of media contacts
  • Follow up to maximize the covergae
  • Daily press coverage

At the present time (June 2016) media relation activities generate 48 articles, of which:

  • Newswires: 5
  • Dailies: 3
  • National Magazines: 2
  • Web: 48
  • Radio: 2
  • TV: 2

The total readerships up to date is 773.000*.
*Source: Audipress

 Overall Results

  • European IPF PC has gained the visibility on all communication materials that have been produced for the event: save the date, invitation, leaflet, invitation letter to MPs, requests for
  • patronage, folders, press kit, roll up.
  • Patients Associations, led by the AMA Fuori dal Buio promoter of the event, had the opportunity to bring the open issues of IPF in Italy to decision makers’ attention. Especially the specific
  • request to recognize IPF as a rare disease throughout Italy was clearly pointed out during the event as to allow fair access to treatment and care to all patients.
  • A short time after the event, on April 5th, Mr. Pierpaolo Vargiu, Member of the Italian Parliament, proposed a motion that was approved unanimously in the Italian National Low Chamber, leading to the inclusion of IPF in the rare diseases list.

The Italian Parliament voted the motion that recognises Idiopathic Pulmonary Fibrosis (IPF) as a rare disease

IPF is going to be included in the forthcoming review of the Italian National Plan for Rare Diseases, a historical achievement that gives hope for a better future to patients, relatives and healthcare professionals. In this long process, patients’ associations have played a fundamental role, by informing people, raising awareness of the problem, helping patients and their families and bringing them together.

The different actions to raise awareness have been supported by many Italian MEPs, and especially: MEP Cécile Kyenge, who made possible the presentation of the European IPF Patient Charter in Brussels in 2014; MEP Elena Gentile, who recently supported the presentation of a Written Declaration to the EU Member States; Italian Members of Parliament, in particular Ms. Paola Binetti and Mr. Pierpaolo Vargiu, who on April 5th 2016 proposed a motion that was approved unanimously in the Italian National Low Chamber, leading to the inclusion of IPF in the rare diseases list. Article available online at www.ipfworld.org

As a matter of fact, only Piedmont and Tuscany had previously recognised IPF as a rare disease spontaneously, identifying an exemption code for all health services needed by patients. Now, by accepting the motion at the National Low Chamber, the government has committed to develop information campaigns, as far as it is concerned, with the aim of recognizing the rare disease at a national level.

Patients’ and relatives’ associations are obviously satisfied with the result, starting from the Italian AMA Fuori dal Buio, the Italian representative in the realization of the European IPF Patient Charter and a founding member of the newly born European IPF Federation (EU-IPFF). These associations have been working hard in the last years to realise important initiatives, such as the creation of the information portals ipfworld.org and ipfcharter.org, and the development of four campaigns for the IPF World Week.

“We are truly grateful to Mr Vargiu, Member of the Chamber, for his commitment to our cause” – said AMA’s President Rosalba Mele, from Modena – “for giving hope to patients from all over Italy. An important achievement, awaited for a long time: we thank all Italian and European Members of Parliament who supported us, together with Roche, for its unconditional support.”

Mr. Vargiu himself explains what has changed: “The Undersecretary for Health Care, Vito De Filippo, assured that IPF will be included in the forthcoming review of the Italian National Plan for Rare Diseases, coincidentally ending in 2016, and that patients will be able to access free health services easily as soon as possible”.

As Mr. Vargiu declared during the presentation of his motion at the Low Chamber, “IPF is a paradigm of the challenge awaiting the Italian Health Care system. By preparing to deal with it, we take up the challenge of modernising the system, of trying to provide citizens with the best quality services. An important step – insisted Mr. Vargiu – in the fields of health care assistance, research, and networking among associations, which can now offer an everimproving service to their associates, patients and families.” Mr. Vargiu then said: “I want to thank AMA Fuori dal Buio again for its passionate contribution. When the “tenants of the government building” pay attention to the voice of the people outside, it is easier to cooperate to do things that are useful for the Community. This is particularly true for that part of the Community that is “more frailer” and needs more attention, i.e. the citizens who need health services.”