Multiple Myeloma in Germany Anita Waldmann President Myeloma

Multiple Myeloma in Germany Anita Waldmann, President, Myeloma Euronet IV Congress of the Polish Myeloma Patient Help Association Olsztyn, Poland 21 February 2009

Situation in Germany – Multiple Myeloma Country facts and figures 1 Ø There are between 15, 000 -20, 000 people in Germany living with myeloma at any one time, and there are 3, 500 -4, 000 new cases per year. Ø The median age of onset is 65 -70. Ø The average life expectancy of a newly-diagnosed myeloma patient under 65 is 7 years, for patients older than 65 it is 5 years. 1 Figures are estimates because there is no country-wide cancer register for Germany. APMM =(Working group of German-speaking plasmacytoma/multiple myeloma self-help groups) e-mail: multiples. myelom. rlp@gmx. de / www. myelom. org

Situation in Germany All Non Hodgkin Lymphomas incl. Multiple Myeloma Estimated Incidence per 100, 000 in age (Germany) Ages Male Female Data: Robert-Koch-Institute 2008

Situation in Germany All Non Hodgkin Lymphomas incl. Multiple Myeloma Age specific incidence and mortality per 100, 000 Data: Robert-Koch-Institute 2008

Situation in Germany All Non Hodgkin Lymphomas incl. Multiple Myeloma Data: Robert-Koch-Institute 2008

Situation in Germany All Non Hodgkin Lymphomas incl. Multiple Myeloma Male Female Data: Robert-Koch-Institute 2008

Situation in Germany All Non Hodgkin Lymphomas incl. Multiple Myeloma New Diagnoses worldwide (World standard) Data: Robert-Koch-Institute 2008

Situation in Germany – Multiple Myeloma Issues and challenges Ø Low myeloma awareness in the orthopaedic surgeon community, which leads to delays in myeloma diagnosis and decreases therapeutic chances. Ø Lack of collaboration between myeloma treatment centres, due to bureaucracy and other factors. Ø Slow legal procedures as it relates to the acknowledgement of the disease with regards to the entitlement to pension and state benefits, which causes financial problems for patients. Ø Too long approval procedures for novel drugs (e. g. , Thalidomide). Ø Lack of an official and patient-centred clinical study register. As a result, it is more difficult to have access to clinical trials. APMM =(Working group of German-speaking plasmacytoma/multiple myeloma self-help groups) e-mail: multiples. myelom. rlp@gmx. de / www. myelom. org

Situation in Germany – Multiple Myeloma Will it get worse? Ø Budget restrictions for General Practitioners and hospitals lead to inequalities regarding patient access to treatment options. Ø Small and inappropriately equipped clinics and hospitals are starting to treat myeloma patients independently rather than referring them to, or collaborating with, qualified centres. APMM =(Working group of German-speaking plasmacytoma/multiple myeloma self-help groups) e-mail: multiples. myelom. rlp@gmx. de / www. myelom. org

Situation in Germany – Multiple Myeloma Solutions Ø Patients need easily accessible and easy-to-understand quality assessments (certifications) of institutions treating myeloma to ensure access to optimal treatment. Ø Improved information flow about clinical studies by means of a patient-centred and centralised study register. Ø Increased participation and voting rights in myeloma-related decision-making bodies. Ø Intensified information and education about the disease. APMM =(Working group of German-speaking plasmacytoma/multiple myeloma self-help groups) e-mail: multiples. myelom. rlp@gmx. de / www. myelom. org

Situation in EUROPE – Multiple Myeloma Hopes to make improvements in treatment and create awareness all over Europe We all need to work together Sign up to the MMM (Multiple Myeloma Manifesto) APMM =(Working group of German-speaking plasmacytoma/multiple myeloma self-help groups) e-mail: multiples. myelom. rlp@gmx. de / www. myelom. org

Activities of MYELOMA EURONET Robert Schäfer, Executive Director, Myeloma Euronet IV Congress of the Polish Myeloma Patient Help Association Olsztyn, Poland 21 February 2009

What is Myeloma Euronet? ● The European Network of Myeloma Patient Groups ● “The voice of myeloma patients in Europe” ● An international non-profit organisation (Association Internationale sans but lucratif, A. I. S. B. L. ) founded on 3 June 2005 at the 10 th EHA Congress in Stockholm ● Registered in Belgium with Secretariat in Berlin ● Members represent more than 6, 000 myeloma patients and their families across Europe ● Board consists of 7 blood cancer patients or patient relatives from 7 European countries ● Medical Advisory Board is made up of 20 members from 10 European countries ● Member of the European Cancer Patient Coalition (ECPC), the European Organisation for Rare Diseases (Eurordis) and the European Can. Cer Organisation (ECCO)

Geographical Overview 37 members (30 organisational and 7 individual) from 20 countries

Board members Anita Waldmann Candy Heberlein Switzerland, Observer Myeloma Stiftung zur Förderung der Knochenmarktransplantation Euronet = Roman Sadżuga Prof. Dr. Miroslav Hrianka Slovak Patients and Poland, Vice President Republic, Observer Polskie Stowarzyszenie Slovenská myelómová spoločnosť Pomocy Chorym patient relatives na Szpiczaka (SMS) – Klub pacientov from eastern Maja Milisavljevic Begoña Barragán García Spain, Treasurer Serbia, Guest Asociación Española and western de Afectados por Udruzenje obolelih od Linfomas, Mielomas y Leucemias multiplog mijeloma Europe working Friedrich Richter Jude Watson together for Austria, Secretary United Kingdom, Guest Myelom- und Lymphomhilfe Österreich patients and Myeloma UK patient relatives Elke Weichenberger Viorica Cursaru Austria, Guest Romania, Observer across Europe. Myelom- und Lymphomhilfe Myeloma Euronet Romania Germany, Honorary President Deutsche Leukämie- und Lymphom-Hilfe Österreich

Why Myeloma Euronet? ● More than 77, 000 people in Europe are affected by myeloma ● Incidence keeps increasing ● Public awareness is low ● Missing support infrastructure (basic needs of patients and their families are often unmet) ● There are significant inequalities across Europe (e. g. , access to treatment) ● Patients can play an important role regarding the approval of new treatment options by the EMEA ● Patients can contribute to political decision-making at national and European levels MYELOMA EURONET The voice of myeloma patients in Europe

Diversity and Transparency www. myeloma-euronet. org Myeloma Euronet Web site: (in 11 languages, GR + RU in development): • Latest news • Myeloma Euronet • Board • Med. Advisory Board • Web site policy • Funding policy • Supporting members International award for Myeloma Euronet Web site • • • Multiple Myeloma MM Manifesto Resources Newsroom Events Links Discussion forums Quiz Contact information Feedback opportunity Myeloma Euronet Annual Reports 2006 -2007 and 2008

Activities of Myeloma Euronet Manifest na Rzecz Pacjentów ze Szpiczakiem Mnogim: 1. Równouprawnienia w badaniach biomedycznych i klinicznych. 2. Interdyscyplinarnej opieki, sprawowanej przez wykwalifikowany fachowy personel. 3. Lepszych informacji i możliwości uzyskania wsparcia. 4. Dostępu do optymalnej terapii. 5. Polityki, która w centrum leczenia i opieki będzie stawiała pacjentów i ich potrzeby. 6. Zmniejszenia izolacji, która charakteryzuje życie chorych ze szpiczakiem mnogim i innymi rzadkimi typami raka. Podpisano przez: Myeloma Euronet – Europejska Sieć Grup Pacjentów Chorych na Szpiczaka Europ. Towarzystwo Transplantacji Krwi i Szpiku Kostnego Europejska Sieć ds. Szpiczaka Towarzystwo ds. Chłoniaków 03/2008: >2, 200 / 40 02/2009: >4, 300 / 52

Activities of Myeloma Euronet Publications, manifestos, press releases, position statements, progress reports, banners, posters, promotional materials, etc. The German Federal Institute for Drugs and Medical Devices has used the Myeloma Euronet brochure on Thalidomide as a template for their “own” patient information brochure.

Activities of Myeloma Euronet International surveys, for example: “Barriers to myeloma diagnosis, treatment and care” Participacion in Public Consultations of the European Commission, for example: “Rare Diseases: Europe’s Challenges”

Activities of Myeloma Euronet Participation in decisions of the European Medicines Agency (EMEA): ● Pre-authorisation Unit ● Post-authorisation Unit For example: European Marketing Authorisation of Lenalidomide and Thalidomide; development of the new EMEA “Code of practice between patients’ organisations and the healthcare industry” Assistance to myeloma patient advocacy efforts vis-à-vis European authorities and national government (Examples from the United Kingdom and Germany)

Activities of Myeloma Euronet European Early Myeloma Diagnosis Campaign ● Collaboration with various European medical societies ● ● European Federation of National Associations of Orthopaedics and Traumatology (EFORT) World Organization of National Colleges, Academies and Academic Associations of General Practitioners/Family Physicians (World Organization of Family Doctors, WONCA) European Neurological Society (ENS) European Renal Association – European Dialysis and Transplant Association (ERA-EDTA) ● Presence at their international congresses ● Articles and announcements for their member newsletters and Web sites and for general interest newspapers ● Posters and press releases

Activities of Myeloma Euronet EFORT Congress 2008: ● Myeloma Euronet information booth ● Article in EFORT newsletter ( 36, 000 members) ● Announcement on EFORT Web site

Activities of Myeloma Euronet Patient Advisory Committee members of ● European Group for Blood and Marrow Transplatation (EBMT) ● European Can. Cer Organisation (ECCO) ● European Society for Medical Oncology (ESMO) Preparation of Patient and Family Days around their congresses Participation at various national and international congresses ● Information stands, surveys, presentation about Myeloma Euronet, etc.

International Comparative Survey on Myeloma Treatment Side Effects and Unmet Patient Needs ● Goals: ● To obtain comparative data from myeloma patients and their families as well as from healthcare professionals about the management and impact of myeloma treatment side effects and how patient needs are being met during the course of treatment ● To help encourage national and international health care leaders and political decision-makers to focus greater attention on the appropriate treatment and care for myeloma patients in Europe ● Survey results will be distributed Europe-wide via press release and will be available online at www. myeloma-euronet. org ● Survey was made possible through an unrestricted grant from Janssen-Cilag ● 9 questions each for myeloma patients and patient relatives (questionnaire 1) and doctors/nurses (questionnaire 2) ● Takes only ~5 minutes to complete ● “Reward” for your participation Innovative solar pocket flashlight No batteries! Dim. : 70 x 41 x 21 mm; charge 2 -3 hrs 5 -6 hrs usage

International Comparative Survey on Myeloma Treatment Side Effects and Unmet Patient Needs List of survey questions For patients/patient relatives For physicians/nurses 1. For how long have you (has your family member) 1. For how long have you been treating/caring for received myeloma treatment? myeloma patients? 2. Where do you (does your family member) stand in the 2. On average, how many myeloma patients do you see course of myeloma treatment? in one week? 3. Which of the following treatments have you (your family 3. Which of the following treatments are used in your member) had during the course of your disease? institution to treat myeloma patients? 4. Would you say that you were (your family member was) 4. Would you say that your patients are well informed appropriately informed about potential side effects of myeloma treatment options by your (your family options? member’s) doctor? 5. In the following overview, please tick those myeloma treatment side effects that you feel have the most negative treatment side effects that you feel have the most impact on a myeloma patient’s overall well-being and negative impact on a myeloma patient’s overall wellplease underline those that you have (your family member being. has) experienced while undergoing myeloma treatment. 6. Are you satisfied with how the doctor has managed any 6. Are you satisfied with how myeloma patients manage side effects that you have (your family member has) the side effects that they have experienced? 7. To what extent/how have treatment-related side effects 7. To what extent do treatment-related side effects affected your (your family member’s) course of myeloma treatment in your daily practice? treatment? 8. Are you aware of any treatment-related side effects that 8. Are you aware of any treatment-related side effects myeloma patients don’t feel comfortable reporting to their that myeloma patients don’t feel comfortable reporting doctor? Please list them below and also state what you to their doctor? Please list them below and also state think are potential reasons. what you think are potential reasons. 9. Appropriate management of treatment-related side effects 9. Appropriate management of treatment-related side is one of many important aspects of myeloma treatment effects is one of many important aspects of myeloma and care. How would you rate your experience with treatment and care. How would you rate your regards to: experience with regards to: Management of treatment side effects / Patient access to information and support / Access to novel treatments / Coverage of treatment costs / Overall quality of treatment and care / Psycho-social support offered / Emotional support offered/ Etc.

International Comparative Survey on Myeloma Treatment Side Effects and Unmet Patient Needs ● Thanks to Tomasz and Roman, questionnaires are available in Polish at the registration desk Myeloma patients and patient Physicians and nurses: relatives: Please participate!!!

Evropský hlas pacientů s mnohočetným myelomem Die Stimme der Myelom-Patienten in Europa The voice of myeloma patients in Europe La voz de los pacientes con mieloma en Europa La voix des patients atteints du myélome en Europe La voce dei pazienti affetti da mieloma in Europa Europejski głos chorych na szpiczaka mnogiego A voz dos doentes com mieloma na Europa Vocea pacientilor cu mielom din Europa Avrupa’daki miyelom hastalarının sesi ﺍﻭﺭﻭﺑﺎ ﻓﻲ ﺍﻟﻤﺎﻳﻠﻮﻣﺎ ﻣﺮﺿﻰ ﺻﻮﺕ