116 Help Lines for Rare Diseases

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1 116 Help Lines for Rare Diseases François Houÿez Director of Health Policy Council of National Alliances, 29 October 2012, Paris

2 Credits ENRDHL is one of the outcomes of the RAPSODY project supported by the European Commission, conducted by EURORDIS and its partners: Funding European Commission, DG Health and Consumer Protection, Programme of Community action in the field of public health Executive Agency for Health and Consumers The responsibility of the content of this report lies with the project partners. The Executive Agency is not responsible for any use that may be made of the information contained therein.

3 ENRDHL in 2012 Swedish national information centre AFM Myoinfo MRIS National information centre on metabolic disorders CLIMB CSH RadioOrg Orphanet CH National Help line NORO Help Line Myasthenia gravis Romania ICRDOD Linha Rara SIO-Feder ENERCA ANSAPERT Coordinating centre Veneto Region Telefono Verde Malattie Rare

4 European Network of Help Lines for Rare Diseases Caller Profile Analysis 2011

5 «un mois donné» Descriptive approach Cross-sectional survey snapshot Transversal analysis of help lines activity To participate is one of the commitments for network membership Always in November since 2009

6 Comparison Help Line Creation year Number of enquiries in 11/2011 Number of respondents % questions answered Overall satisfaction(sd) AFM-Myoinfo % 7.9 (1.2) SIO-Feder % Not documented ENERCA % 8.3 (0.6) ICRDOD % 9.4 (0.9) Linha Rara % 8.8 (0.9) NORO Help Line % 9.7 (0.5) Myasthenia Gravis % 8.6 (0.6) Coordinating Centre Veneto Region % Not documented Telefono Verde % Not documented National Help Line Croatia Maladies Rares Info Service In creation % 8.6 (2.5) % Not documented Total % 8.4 (1.2)

7 CPA 2011 November 2011 Number of help lines 11 Number of respondents 51 # calls 1739 Average # of enquiries per respondent 34.1 Average # of enquiries per help line Help lines using Orpha codes 7/11 (3/8 in 2009)

8 Who s enquiring?

9 How?

10 Purpose of the enquiry

11 1589 calls about 552 distinct diseases (new in 2011)

12 Nature Article to be submitted to JMIR (Journal of Medical Internet Research) driven by patients, governmental help line or healthcare professionals Scope All rare diseases or specific ones Composition Volunteers only, staff only, or a mix Operation mode Telephone, s Cost structure Call for free or not Enquirer s category Purpose of enquiry Responses given Duration of enquiry Satisfaction (respondent s) Relevance of responses Asked for (number) Responded to (number) % match between asked and responded to Information on disease % Specialist/expert % Social care (all queries except exemption) % Contact with other patient %

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14 The concept Short 6-digit numbers, beginning with 116 for calls to Harmonised Services of Social Value, e.g Potentially of value to visitors from other countries Same service = Same number within European Union (and CEPT countries) Calls routed nationally

15 Advocate for 116! Benefits Patients and families can access quality information wherever they are in Europe (EU and beyond); Higher visibility of rare diseases help lines: more EU citizens can contact them; Emergencies: a rapid connection with specialised centres / hospitals; Telephone assistance for cross-border care, for the reporting of suspected adverse drug reactions

16 Political support Commission Communication Rare Diseases: Europe's challenges (11/11/2008) 5.2. Access to specialised social services Centres of expertise may also have an essential role in developing or facilitating specialised social services which will improve the quality of life of people living with a rare disease. Help Lines, Respite care services and Therapeutic Recreation Programmes, have been supported and need to be sustainable to pursue their goals Council Recommendation on an action in the field of rare diseases (2009/C 151/02) VI. Empowerment of patient organisations 18. Consult patients and patients representatives on the policies in the field of rare diseases and facilitate patient access to updated information on rare diseases 19. Promote the activities performed by patient organisations, such as awareness-raising, capacity-building and training, exchange of information

17 Conditions Commission Decision 2007/116/EC - 15 Feb 2007 Commission Decision 2007/698/EC 29 Dec 2007 Article 4 The service provides information, or assistance, or a reporting tool to citizens, or any combination thereof; The service is open to all citizens without any requirement of prior registration; The service is not time-limited; There is no payment, or payment commitment as a prerequisite to use the service; The following activities are excluded during a call: advertisement, entertainment, marketing and selling, using the call for the future selling of commercial services.

18 Two steps At European Level Application number-service Commission Decision At national level Telecom authority calls for interest Application number-organisation Telecom authority assigns the number organisation ready to provide the service telecoms route calls

19 Member States obligations Member States do not have to assign the numbers, but are required to reserve them and inform the public and providers of their availability. They are not legally required to ensure that the service is actually provided.

20 Help line and operator Partners Helpline Telecom operator 116 xyz National transit tel operator Telecom operator 116 xyz Telecom operator Telecom operator 116 xyz

21 Important aspects How to bear the costs? National plans for RD 2011, 7 countries calls Extrapolation EU: calls 0.5 /local call = Get support from the competent authorities Disseminate information to stakeholders (a.o. telecom operators) Price negotiations with telecom operators

22 Procedures Done May 2009: network meeting and agreement to explore : strengthening of the network and governance February 2012: network meeting and confirmation of interest 17 July 2012: application sent to EC 10 August 2012: receipt acknowledgement Before end 2012 Commission evaluates proposal French MofH writes to her colleagues Communications Committee (COCOM) meets and considers the Commission s recommendation support from 14 Member States Final response early 2013?

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24 Applicants 6 help lines from 5 Member States have committed to implement the 116 number: Coordinating Centre for Rare Diseases, Veneto Region (Italy) Telefono Verde Malattie Rare (Italy) Maladies Rares Info Services (France) NORO Help Lines (Romania) FEDER SIO (Spain) Linha Rara (Portugal)

25 You can advocate for (1) The inclusion of the creation of a national help line for rare diseases, or its development when there is one, in the national plan in your country (the help line can be operated by public services or by a patients organisation), considering that: A National Help Line on Rare Diseases is a concrete achievement that has an immediate impact in the public opinion; The costs are moderate, as a service can operate with an annual budget of to start with, including the telephone costs if the calls are free for the users; It is a measure that could appear as a priority in all national plans for rare diseases; A national help line already exists in Bulgaria, Croatia, France, Italy, Portugal, Romania, Spain;

26 You can advocate for (2) The support to the proposal for a 116 number for help lines for rare diseases at the next COCOM meeting. Contact your MofH, explain, and ask to contact counterpart in Telecom administration who will represent your Member State at the next Telecommunications Committee (COCOM, ation_enforcement/comm_committee/index_en.htm)

27 Thank you!