IV Congress of the Polish Myeloma Patient Help Association IV Congress of the Polish Myeloma Patient Help Association Olsztyn, Poland 21 February 2009

IV Congress of the IV Congress of the Polish Myeloma Patient Help AssociationPolish Myeloma Patient Help Association

Olsztyn, Poland21 February 2009

Multiple Myeloma Multiple Myeloma in Germanyin Germany

Anita Waldmann, President, Myeloma Euronet

Country facts and figuresCountry facts and figures11

There are between 15,000-20,000 people in Germany livingwith myeloma at any one time, and there are 3,500-4,000new cases per year.

The median age of onset is 65-70.

The average life expectancy of a newly-diagnosed myelomapatient 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.

Situation in Germany – Multiple Myeloma

APMM =(Working group of German-speaking plasmacytoma/multiple myeloma self-help groups)e-mail: [email protected] / www.myelom.org

Estimated Incidence per 100,000 in age (Germany)

Data: Robert-Koch-Institute 2008Male Female

Situation in GermanySituation in GermanyAll Non Hodgkin Lymphomas incl. Multiple MyelomaAll Non Hodgkin Lymphomas incl. Multiple Myeloma

Ages

Data: Robert-Koch-Institute 2008

Age specific incidence and mortality per 100,000




Male Female




New Diagnoses worldwide (World standard)



Issues and challengesIssues and challenges

Low myeloma awareness in the orthopaedic surgeon community, which leads to delays in myeloma diagnosis and decreases therapeutic chances. Lack of collaboration between myeloma treatment centres, due to bureaucracy and other factors. 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. Too long approval procedures for novel drugs (e.g., Thalidomide). Lack of an official and patient-centred clinical study register. As a result, it is more difficult to have access to clinical trials.



Will it get worse?Will it get worse?

Budget restrictions for General Practitioners and hospitals lead to inequalities regarding patient access to treatment options.

Small and inappropriately equipped clinics and hospitals are starting to treat myeloma patients independently rather than referring them to, or collaborating with, qualified centres.



SolutionsSolutions

Patients need easily accessible and easy-to-understand quality assessments (certifications) of institutions treating myeloma to ensure access to optimal treatment.

Improved information flow about clinical studies by means of a patient-centred and centralised study register.

Increased participation and voting rights in myeloma-related decision-making bodies.

Intensified information and education about the disease.


Situation in EUROPE – Multiple Myeloma

HopesHopes

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)


IV Congress of the IV Congress of the Polish Myeloma Patient Help AssociationPolish Myeloma Patient Help Association

Olsztyn, Poland21 February 2009

Activities of Activities of MYELOMA EURONETMYELOMA EURONET

Robert Schäfer, Executive Director, Myeloma Euronet

What is Myeloma Euronet?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 10th 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 CanCer Organisation (ECCO)

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

Geographical OverviewGeographical Overview

Begoña Barragán García Spain, TreasurerAsociación Española de Afectados por Linfomas, Mielomas y Leucemias

Candy Heberlein Switzerland, Observer

Stiftung zur Förderung der Knochenmarktransplantation

Board membersBoard members

Roman Sadżuga Poland, Vice PresidentPolskie Stowarzyszenie Pomocy Chorym na Szpiczaka

Friedrich Richter Austria, SecretaryMyelom- und Lymphomhilfe Österreich

Viorica Cursaru Romania, ObserverMyeloma Euronet Romania

Prof. Dr. Miroslav Hrianka Slovak Republic, Observer

Slovenská myelómová spoločnosť (SMS) – Klub pacientov

Anita Waldmann Germany, Honorary PresidentDeutsche Leukämie- und Lymphom-Hilfe

Maja Milisavljevic Serbia, Guest

Udruzenje obolelih od multiplog mijeloma

Jude Watson United Kingdom, Guest

Myeloma UK

Elke Weichenberger Austria, Guest

Myelom- und Lymphomhilfe Österreich

Myeloma Myeloma Euronet = Euronet =

Patients and Patients and patient relativespatient relatives

from eastern from eastern and western and western

Europe working Europe working together for together for patients and patients and

patient relatives patient relatives across Europe.across Europe.

Why Myeloma Euronet?Why Myeloma Euronet?

MYELOMA EURONET The voice of myeloma patients in Europe

● 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

Diversity and TransparencyDiversity and Transparency

(in 11 languages, GR + RU in development):

Myeloma EuronetAnnual Reports2006-2007 and 2008

• Latest news• Myeloma Euronet

• Board• Med. Advisory Board• Web site policy• Funding policy• Supporting members

• Multiple Myeloma• MM Manifesto • Resources • Newsroom• Events• Links • Discussion forums • Quiz• Contact information• Feedback opportunity

International award for Myeloma Euronet Web site

Myeloma EuronetWeb site:

www.myeloma-euronet.org

Activities of Myeloma EuronetActivities 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 / 4002/2009: >4,300 / 52


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.


International surveys, for example: “Barriers to myeloma diagnosis,treatment and care”

Participacion in Public Consultationsof the European Commission, for example:“Rare Diseases: Europe’s Challenges”

Activities of Myeloma EuronetActivities of Myeloma EuronetParticipation in decisions of the European MedicinesAgency (EMEA):● Pre-authorisation Unit● Post-authorisation UnitFor example: European Marketing Authorisation of Lenalidomideand Thalidomide; development of the new EMEA “Code of practicebetween patients’ organisations and the healthcare industry”

Assistance to myeloma patient advocacy efforts vis-à-visEuropean authorities and national government(Examples from the United Kingdom and Germany)


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


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


Patient Advisory Committee members of ● European Group for Blood and Marrow Transplatation (EBMT)● European CanCer 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.

● 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 anunrestricted grant from Janssen-Cilag

● 9 questions each for myeloma patientsand 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 21mm; charge 2-3hrs 5-6hrs usage

International Comparative Survey International Comparative Survey on Myeloma Treatment Side Effects on Myeloma Treatment Side Effects

and Unmet Patient Needsand Unmet Patient Needs


and Unmet Patient Needsand Unmet Patient NeedsList of survey questionsFor patients/patient relatives For physicians/nurses

1. For how long have you (has your family member) received myeloma treatment?2. Where do you (does your family member) stand in the course of myeloma treatment?3. Which of the following treatments have you (your family member) had during the course of your disease?4. Would you say that you were (your family member was) appropriately informed about potential side effects of myeloma treatment options by your (your family member’s) doctor?5. In the following overview, please tick those myeloma treatment side effects that you feel have the most negative impact on a myeloma patient’s overall well-being and please underline those that you have (your family member has) experienced while undergoing myeloma treatment.6. Are you satisfied with how the doctor has managed any side effects that you have (your family member has) experienced?7. To what extent/how have treatment-related side effects affected your (your family member’s) course of myeloma treatment?8. Are you aware of any treatment-related side effects that myeloma patients don’t feel comfortable reporting to their doctor? Please list them below and also state what you think are potential reasons.9. Appropriate management of treatment-related side effects is one of many important aspects of myeloma treatment and care. How would you rate your experience with regards to:

1. For how long have you been treating/caring for myeloma patients?

2. On average, how many myeloma patients do you see in one week?

3. Which of the following treatments are used in your institution to treat myeloma patients?

4. Would you say that your patients are well informed about potential side effects of myeloma treatment options?

5. In the following overview, please tick those myeloma treatment side effects that you feel have the most negative impact on a myeloma patient’s overall well-being.

6. Are you satisfied with how myeloma patients manage the side effects that they have experienced?

7. To what extent do treatment-related side effects affect myeloma treatment in your daily practice?

8. Are you aware of any treatment-related side effects that myeloma patients don’t feel comfortable reporting to their doctor? Please list them below and also state what you think are potential reasons.

9. Appropriate management of treatment-related side effects is one of many important aspects of myeloma treatment and care. How would you rate your 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.


and Unmet Patient Needsand 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!!! Please participate!!!

Evropský hlas pacientů s mnohočetným myelomemDie Stimme der Myelom-Patienten in Europa

The voice of myeloma patients in EuropeLa voz de los pacientes con mieloma en Europa

La voix des patients atteints du myélome en EuropeLa voce dei pazienti affetti da mieloma in Europa Europejski głos chorych na szpiczaka mnogiego

A voz dos doentes com mieloma na EuropaVocea pacientilor cu mielom din Europa Avrupa’daki miyelom hastalarının sesi

اوروبا في المايلوما مرضى صوت

Documents

IV Congress of the Polish Myeloma Patient Help Association IV Congress of the Polish Myeloma Patient Help Association Olsztyn, Poland 21 February 2009