Europa Uomo / Did You Know? 01-2014 1

Europa Uomo Board

Top row, from left to right: Hans Randsdorp (Chairman) Tor Tausvik (Vice Chairman) Max Lippuner (Member) Ken Mastris (Acting Secretary & Treasurer) Malcolm Duncan (Member)

Bottom row, from left to right: Christian Arnold (Vice Chairman) Erik Briers (ex-officio member)

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Contents

p.1 Editorial by Malcolm G. Duncan

p.2 An end to second class citizenship

p.3 Message from the Treasurer and Acting Secretary Professor Louis Denis awarded in Stockholm

p.4 Selbsthilfe Prostatakrebs, Austria The Belgian foundation against cancer, “Stichting

tegen kanker”, organized an information day for prostate patients in Antwerp, on May 10

th, 2014,

Belgium

New Board Europa Uomo Cyprus Activities 2013, Czech Republic

p.7 Meeting of the People (Folkemødet) on the island of Bornholm, Denmark Summary on goals and activities of the Prostate

Cancer Patient Support Organisation, Germany

p.9 Hungarian League Against Cancer, Hungary

p.10 The PerSTEP project – A practical and theoretical approach in the uro-oncological sector, Italy

p.11 The Lithuanian association of prostate cancer patients, Lithuania

How a difficult period may promise better days, Portugal

p.12 The Code of recommendations against prostate cancer, Spain

2013 has been the most active year in the history of the Swedish Prostate Cancer Federation, Sweden

p.13 The Blue Moustache, Sweden

p.14 New wonder drug for prostate cancer to “offer vital lifeline” to thousands of men, UK

Editorial Malcolm G. Duncan - Newsletter Coordinator

Dear friends and colleagues,

Many many thanks for your immediate enthusiastic support for this new editorial initiative of Europa Uomo Europe. As you well know one of its professed objectives is to favour a better knowledge and understanding of our member organisations and their praiseworthy efforts to increase awareness of this terrible disease: prostate cancer.

Though an incomplete response to my short to the point questionnaire on Health Care Services in each member country impeded the completion of the report entitled “An End to Second Class Citizenship”, the 12 responses promptly received clearly show the long way we still have to go in order to achieve a health care service already enjoyed by our lifetime partners: our wives. Benefits which they have achieved mainly thanks to their pragmatism and courage.

In Hungary, and they are not alone, the low level of awareness among the adult male population tends to lead to much delayed diagnosis and, hélas, to a heavy death toll (c.50%). The Czech Republic is now tackling this problem in a most pragmatic manner by erecting billboards along the main roads around Prague and Brno.

Germany is without doubt the country to emulate with 240 patient groups spread across the country and nearly 100 multi-disciplinary centres located all over the nation.

Denmark and Sweden have however informed us of their commitment to fighting prostate cancer. It is said that round 3 million European adult men have or are

Newsletter of the 23 European member Forums dedicated to improving knowledge of cancer of the prostate

Did You Know? n°1 - 2014

Europa Uomo / Did You Know? 01-2014 2

being treated and, in spite of medical progress, it is estimated that this number will double within the next 20 years and deaths may even treble, mainly due to increasing longevity. In the course of 2013 our Swedish friends organised 160 national events and, notwithstanding a more modest population in respect of many other European states, membership grew by 7% in only one year to almost 9,000. Major awareness in Spain is now hoped to be obtained by a carefully designed Code.

The Newsletter ends with a hopefully note on a new drug discovery in the UK recently approved by the NHS.

We trust that this new initiative will do the trick and lead to a more inter-active European association with a most ambitious objective of saving adult male lives from this insidious disease.

The Newsletter is destined to a vast European audience composed of political, social and medical authorities, pharmaceutical companies, as well as the mass media and we await your comments on our first effort (See the short questionnaire attached to the covering letter).

ANY SUGGESTIONS ARE MOST WELCOME

Kindly compile the questionnaire in the covering letter and promptly email it to: europauomo@skynet.be

An end to second class citizenship Malcolm Galloway Duncan, Europa Uomo Italy, Italy

One of the common problems which still exists and which is detrimental to the commitment of Europa Uomo Europe to improve its visibility and consideration by the outside world, including the medical profession, is the difficulty often encountered to acquire responses to market inquiries. Initiatives which aim at bringing to the fore aspects like a certain discrepancy in public health services in several member countries vis-à-vis the male population in comparison with the services provided to their female companions for life. Based on the information so far received the only exception appears to Poland, where prostate, bladder and colon screening begins as from 45 and is totally free. That is also in spite of the fact that Europa Uomo Europe recently celebrated its tenth anniversary, includes associations from 23 countries, and probably very shortly will amount to 26.

The present inquiry, carried out on behalf of the Newsletter, wishes to point out such discrepancies in the general health services in several member countries in the delicate area of common male cancers

which often prove mortal, and the enviable position of their lifetime partners which is undoubtedly principally to their merit. The enormous difference in awareness of their bodies and physical needs is determined at a very early age by the female population. A member of the Europa Uomo Italia Board once carried out an improvised inquiry on the prostate and the results were both amazing and slightly humorous. Some men knew little or nothing about the prostate and what it served. Their difficulty in identifying its location would have merited an award. However the most astonishing part of the same inquiry was that some men were not sure whether women were also equipped with a prostate. Hungary was the respondent which expressed most concern about the lack of awareness among the male population which they believe may be partly responsible for the high rate (circa 50%) of the death toll from this disease due to late diagnosis.

Let’s take a look at the 12 complete answers which are already in our possession. 9 of the 12 respondents proudly confirm the safeguards guaranteed to the genteel sex and, in some cases, at an already fairly young age. In most cases such services are free of any charge and they frequently receive an invitation to effect a screening directly from the local Health department. The situation differs greatly in many countries in the treatment of the male population. Apparently, unlike for members of the genteel sex, there appears to be no service at all whereby the local health department invites the male population to have a prostate screening (PSA test). It can however be effected on medical advice (France) in Italy and in Germany, but in the last case, if it is merely to check the health of the prostate, it is not free of charge. In Hungary at present it must be advised by a urologist, otherwise it requires payment. However Hungary is attempting to extend this right also to family doctors (GPs). With regard to the treatment of prostate cancer, only 4 of the countries which have so far replied to our questionnaire have Multi-Disciplinary Centres (France, Germany, Hungary and Italy). The most outstanding case is undoubtedly Germany with 823 such centres, 96 of which are dedicated to the cure of prostate cancer. Austria is in the process of setting up such centres and other countries like Ireland and Spain, have specialized centres which however do not yet responds fully to Multi-Disciplinary Centre criteria. It is hoped that we will shortly receive the 9 missing answers and that Switzerland and the Slovak republic will kindly provide missing data. We plan to publish the completed survey in the next number of the Newsletter and wish to take this occasion to thank all those national associations which kindly replied on time and thus permitted us to publish this preliminary report.

Europa Uomo / Did You Know? 01-2014 3

Message from the Treasurer and Acting Secretary Ken Mastris

First of all I welcome this newsletter as a platform of sharing information between our friends in Europa Uomo. It’s an honour and privilege that I will present the reports at the General Assembly in London, and hope to see as many as can attend. As this is our tenth year we must ensure that the organisation carries on from the hard work done by our founders Louis Denis, Tom Hudson and Alberto Costa. We are the voice of patients in Europe and we must be heard. We have to be prudent in our spending as raising funds is becoming more difficult for all organisations. We are trying to get more members mostly from Eastern Europe and if any group can assist please contact the Secretariat - we need your help to achieve our working plan. The Board will continue to act in an open manner and will continue to fight for our goals. I would like to take this opportunity to thank Louis, Brigitte, Anja and Hans for their support and assistance since the last GA. Let’s enjoy our 10

th birthday and agree the way forward

for Europa Uomo in the spirit of our founders.

Professor Louis Denis awarded in Stockholm Anja Vancauwenbergh, Secretariat Europa Uomo, Belgium

The 29th annual congress of the European Association of Urology (EAU) was organised in Stockholm from 11 to 15 April 2014. This interactive and global oriented meeting opens traditionally with a national cultural manifestation of the host country and the proclamation of the annual awards to elected members. About half of the 14.000 participants were present for this gala evening in Expo Stockholm. The atmosphere was created instantly with the Divine Trio in collaboration with the Stockholm Sinfonietta and the

male choir of the Studentsångare who interpreted old Swedish songs in a light and sound show followed by a medley of popular Italian opera arias. Professor Per-Anders Abrahamsson presented the series of awards 2014. One of the important awards is the Frans Debruyne Life Time Achievement Award, given since 2005, for a long and important contribution to the activities and development of the EAU. Professor Denis was elected by the EAU Board to accept this award.

Professor Per-Anders Abrahamsson, as master of ceremony, called attention to a number of scientific awards, the launch of international societies and presentations, to the dozens of congresses and symposia and hundreds of peer reviewed publications produced by Professor Denis, MD, FACS, in addition to his important work in scientific and organizational work on cancer as well as his vocation as an urologist. The presidency of the European Organisation for Research and Treatment of Cancer (EORTC), his board functions in the International Union against CanCer (UICC) and the foundation of the European Journal of Cancer (EJC) which happened outside the EAU sphere of interest. He finished with a joke if anybody believed that Louis had edited or co-edited more than 50 books.

Professor Denis answered in his typical Antwerp style that anybody with an EAU membership number of 0103 must have had plenty of time to do everything he did. He thanked EAU for this recognition of the work of his old and new teams and the global network created over the last 50 years. Indeed he feels that without the support and dedication of his teachers, colleagues, collaborators, friends and, for sure, his family he would never have achieved such goals.

Professor Denis focused especially on the thousands of collaborators and nurses that had taken care with the optimal urological treatment of the patients while ha had been travelling the world for science. He dedicated this award to all and in his personal sphere to three collaborators: Doctor Pierre Nowé, his

Europa Uomo / Did You Know? 01-2014 4

right hand in the Antwerp Hospital Network; Professor Frans Keuppens, his right hand in the University Hospital of Brussels; and Ms. Brigitte Dourcy-Belle-Rose for 40 years of support and dedication to all initiatives.

He ended with an advice to the young colleagues. The EAU is an open house built on a rock foundation of collaboration. All subgroups in urology and related specialties are welcome. An open house for specialists from the five continents. An open house for equal opportunities, despite your personal preference in specialized areas of medicine, nursing or health technology specialists. As soon as EAU invites you to serve don’t delay but immediately accept. The future guarantee for optimal medical treatment and personal holistic care will become more complex and financially unstable. “Plus est en vous”. We need the support and dedication of each one of you. One last detail: Professor Frans Debruyne started his career as co-assistant with Pierre Nowé in the St. Jan Hospital at Bruges. The circle (of generations) is closed. It has proved to be a fertile, progress-packed half century of urology.

AUSTRIA

Selbsthilfe Prostatakrebs Ekkehard F. Buechler, Chairman Selbsthilfe Prostata-krebs, Austria

Selbsthilfe Prostatakrebs, the Austrian arm of Europa Uomo, was set up in 1997 and was one of the founding members of Europa Uomo Europe. Its main objectives concern an ever better awareness and care of prostate patients by prompting opportune preventive medical care through regular monthly lectures by medical experts. They are then promptly inserted in our website and are also published in local dailies. We are at present in the process of producing a series of brochures and leaflets for distribution in Austria.

BELGIUM

The Belgian foundation against cancer, “Stichting tegen kanker”, organized an information day for prostate patients in Antwerp, on May 10th 2014 Rik Cuypers, US TOO Belgium, Belgium

The Foundation against cancer enjoys a national and international recognition and therefore managed to gather together ten speakers and an audience of 220 for its symposium on prostate cancer. The medical expertise present was impressive and the

foundation met one of its goals, namely to inform the population. It was Interesting to note the presence of non-patient men in the audience. The titles of the papers were: "Do all prostate cancers have to be treated?", "An overview of the different treatments of prostate cancer", "Incontinence", "Impotence", "Hormone treatments", "What to do in case of the failure of hormone treatments " and "The active role of the mature patients".

The most recent medicines available to Belgian patients were presented, and we noted a big shift from the development status to daily practice. A great deal of emphasis was put on active surveillance and the influence of the director of the Belgian Us Too association was adamant on that point. A member of the board of this association, Henk Van daele, spoke as a non-doctor and demanded the patients to be treated interprofessionally, moreover in an interdisciplinary manner. The speakers evaluated the quality of their presentations, by encouraging questions from the public and then demanding them to express their opinion on the same.

CYPRUS

The new Board of Europa Uomo Cyprus was elected at the general assembly held on 29th March 2014. At its first Board meeting on 8th April the following positions were decided: Andreas Moyseos, President; Erol Riza, Vice-President; Panajiotis Neophytoy, Secretary; Kypros Erotokritou, Treasurer, and Stayros Voniatis, Michalakis Kakoyli and Neophitos Michael as members.

CZECH REPUBLIC

Activities Czech Republic 2013 Dalibor Pacik, Chairman Europa Uomo CZ, Czech Republic

Billboard campaign in Brno and Prague An edifying campaign has been realized in the cities of Brno and Prague. In each town 20 billboards informing

Europa Uomo / Did You Know? 01-2014 5

about the risk of prostate cancer were installed. These billboards included also the link to further information (counseling online included – www.europauomo.cz).

Auspices of the Mayor of the Capital of the Czech Republic The project Europa UOMO CZ was held under the auspices of the Mayor of Prague, the capital city of the Czech Republic, prof assoc. Bohuslav Svoboda, M.D. We had a great opportunity to promote our project on the web site praha.eu and on the large TV screens on the premises of the City Council in Škodův Palace and in the City Hall on Mariánské square in Prague.

Promotion on the large TV screens in the Prague City Council Large TV screens promoting Europa UOMO CZ campaign supporting fight against prostate cancer have been installed on the premises of the City Council in Škodův Palace in Jungmannova street and in the City Hall on Mariánské square.

Booklet: Prostate - for men and women who love them

Europa UOMO CZ in cooperation with Europa Uomo and with the support of its partners has published a booklet titled: Prostate - for men and women who love them. You can browse it on the following web link: http://www.europauomo.cz/brozura.php or order it free of charge by regular mail.

City light show cases and Europa UOMO CZ promotion in the city of Brno During September 2013 posters informing about the danger of prostate cancer and about the opportunity to get the free of charge booklet “Prostate- for men and women who love them” have been installed in the City Light show cases located on the public transportation stops in Brno, with the kind support of Brno City Council.

Press conference “Urology week – prostate diseases” Europa UOMO CZ in cooperation with the European Association of Urology and the Czech Urological Society organized on the occasion of Urology Week on September 17, 2013 a press conference in hotel Paris in Prague. The professional lectures were delivered by Professor Babjuk, the President of the Czech Urological Society, and prof. Dalibor Pacík, the Chairman of EUomo CZ. Milan Uhde, the Chairman of the Czech TV Council and Zdeněk Žurman, a publicist and writer, participated in the roles of patients.

The conference was very well attended by the major Czech media houses and all lectures provoked excited discussions, which inspired numerous articles published in the media and enabled to inform the lay public about these important topics. More information can be found on www.europauomo.cz.

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Representative of Europa UOMO CZ Professor Pacík, the Chairman of Europa UOMO CZ, who was awarded the Highest award of South Moravian Region, was invited on the occasion of the visit of the President of the Czech Republic Miloš Zeman to the city of Brno, for a short informal meeting.

Europa UOMO CZ and the Day of Men´s Health This edifying event was the grand finale of the Urology week. It was organized in cooperation with Brno University Hospital. On September 27, 2013 a large tent was installed on the central square in the Brno city centre (Náměstí Svobody). Since 11 a.m. until 6 p.m. urologists from Brno University Hospital informed lay population (free of charge!) about urological diseases endangering male population. Even though this event was focused on male urological diseases, it was also addressed to “women who love them”. Interest and attendance exceeded expectations as almost 300 men and women attended the tent with active questions.

This event was held under the auspices of MUDr. Roman, Kraus, MBA, Director of University Hospital Brno, Prof. MUDr. Jiří Mayer, PhD, Dean of the Medical Faculty of Masaryk University, JUDr. Michal Hašek, Hetman of South Moravian Region and Roman Onderka, the Mayor of Brno, Milan Uhde, the Chairman of the Czech TV Council and last but not last the Executive Committee of Czech Urological Society. More information can be found on the following link: http://www.ceskatelevize.cz/zpravodajstvi-brno/zpravy/243828-den-muzskeho-zdravi-na-rakovinu-prostaty-rocne-zemre-1500-muzu/ And: http://www.ceskatelevize.cz/ivysilani/10122427178-udalosti-v-regionech-brno/313281381990927-udalosti-v-regionech/

Urology week and Europa UOMO CZ and other activities Europa UOMO CZ paid an extraordinary attention to the Urology Week and the Day of the Prostate and organized numerous events in association with this occasion: Topics such as prostate cancer have been discussed and popularized thanks to the very popular live talk show “(She is) Home alone” (which has very high rating) focusing mainly on female target audience; but surprisingly it was also followed by a large proportion of men. On September 20, 2013 Professor Pacík was invited to the public Czech TV; the interview was followed by approximately one hour on the online chat with the viewers who had the opportunity to ask Professor Pacík questions related to this issue.

More information can be found on the following link: http://www.ceskatelevize.cz/porady/1148499747-sama-doma/313292320030015/video/281092 And: http://www.ceskatelevize.cz/porady/1148499747-sama-doma/313292320030015/video/28110

The same topic has been refreshed several days later (September 25, 2013) during different live talk show „Good morning“ focusing on a different target audience. More information can be found on the following link: http://www.ceskatelevize.cz/ivysilani/10435049455-dobre-rano/313292320020094/obsah/281910-den-muzskeho-zdravi/

The media attention was further emphasized by the interviews broadcasted by Český Rozhlas (Czech Radio Broadcasting) and articles published in numerous newspapers distributed for free, which focus on wide target population (Metro magazine etc.).

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DENMARK

Meeting of the People (Folkemødet) on the island of Bornholm K.B. Madsen, Chairman PROPA; Denmark

Each summer a public meeting with the participation of many Danish politicians is held in Allinge on the island of Bornholm. The meeting attracts about 60.000 people, of which many are top politicians and journalists.

In 2014 the meeting will take place from Thursday June 12th to Sunday June 15th. PROPA, the Danish Prostate Cancer Society, will take part in the meeting and has a stand in a tent on the Giant beach near Allinge harbour. In addition to having the stand, PROPA will take part in various events on each of the four days of the meeting.

The first event will be in the tent of the Senior Citizen Society (Ældresagen) on Thursday June 12th from 4 pm to 5 pm with the title “Sex, Love and your (im)possible body”.

There they will meet Margrethe Kähler, sexologist from Ældresagen, Bjarne Oxlund, chairman of “Sex and Society” and Jens and Marianne, a couple from the Danish Prostata Cancer Society in the “Ministry of Love”. It amounts to an open story/debate about the challenges for the elderly and those suffering from this disease with respect to sex and the love of life.

Love, eroticism and sex – is the door to these sensuous oases which may be closed, when we become older or sick. Our protestant past which connects sex with propagation and the widespread worship of young, beautiful and healthy people in advertising and films has created a taboo about elderly and sick people as being sexless. This is not true, but it can represent a great challenge.

Two experts and a couple hit by prostate cancer will talk about these normal/abnormal conditions and put music and words into some of the feelings that come to the surface when a couple is hit in their sexuality.

On Friday June 13th from 9.00 to 10.00 PROPA has been invited to participate in a debate at the platform of Danish Industry Society in Klostergaarden, Allinge with the title “Men – the weak sex of the health system”. The debate is led by a journalist, Martin Krasnik, with the participation of the Danish health system, a practicing doctor and a nurse, a member of a trade union, a politician (health spokesman) and a psychologist plus the Chairman of PROPA, K.B. Madsen.

Danish men with low education live 13 years less than

a group of women with high education. In nearly all health areas men have a poorer prognosis than women. Why do we have this sex-based imbalance? How can we eliminate these differences?

On Saturday June 14th

, from 11.30 to 12.30, PROPA will participate in an event in Meningsministeriet (the Ministry of Opinions) about “Participation of the citizens in the health system – a pure utopia?” More citizens – fewer patients. This is the heading used by the government for their proposal for a change of the Danish health system. The citizens should be consulted more, when they have to go through a longish treatment. This results in better treatment, better satisfaction and fewer re-admissions.

The intensions are fine, but the reality in many hospitals is quite different according to a study. Far too few citizens have a real influence on how they get the best result from their hospitalization. The debate on this subject will be led by the journalist Kurt Strand with participation of politicians, hospital doctors and a member from PROPA.

On Sunday June 15th from 11.30 to 2 pm there will be an event in the PROPA tent: Life with prostate cancer – a Nordic survey. PROPA has in cooperation with the 3 other Nordic patient organizations carried out the first Nordic survey about prostate cancer patients’ experience with the treatment system and the subsequent quality of life. More than 6.000 men have answered the questions – this makes this survey unique. The survey has been controlled by “Kompas Kommunikation” and financed by Astellas Pharma. The results of the survey will be shown on a large screen in the PROPA tent, and will be commented on by PROPAs Chairman, K.B. Madsen, Head of the Secretariat Jens Ingwersen and by other PROPA members.

GERMANY

Summary on goals and activities of the Prostate Cancer Patient Support Organisation Germany Günter Feick, President BPS, Germany

RESEARCH, GUIDELINES, SPECIALIZED TREATMENT, OUTCOME MEASUREMENT, AND QUALITY OF LIFE. All matter to patients and drive the activities of the Prostate Cancer Patient Support Organization of

Germany, the BPS, www.prostatakrbs-bps.de. Recognizing that the absence of clearly defined goals, tends to make us strangely loyal to per-

forming trivial daily acts, the BPS has agreed to work for the following goals:

Europa Uomo / Did You Know? 01-2014 8

1. Medical networks of competence for the advanced prostate cancer

2. Therapy guidelines evidence based on most current medical knowledge

3. Enhanced participation in risk adapted early detection of prostate cancer avoiding overtreatment

4. Quality indicators for measuring health outcome of prostate cancer treatments

5. Coordinated prostate cancer research

6. Certified prostate cancer centers

7. Representation in public health and other committees influential in prostate cancer care

8. Annual symposiums on the status and strategy of prostate cancer treatment with physicians, health insurances, Ministry of Health, Federal Joint Committees, German Cancer Aid and German Cancer Society

The following information regards today’s status of achievements pursuing BPS goals.

Ad 1. German Working Group on Castration Resistant

Prostate Cancer (GWG-CRPC), http://www.gwg-crpc.com/index.php/de/gwg-crpc, established in

2012, with membership of 12 university clinics for urology. Coordinated research and specialized treatments are landmarks of the GWG-CRPC.

Ad 2. Guideline for the diagnosis and treatment of prostate cancer prepared and publicized 2011 was updated Mar 2014. 3 BPS representatives served in the guidelines commission. Guidelines for the treatment of osteonecrosis of the jaw and guidelines on psycho-oncological treatment were finalized and published in 2013 with one BPS representative serving in each guideline commission. 3 Patient guidelines for the diagnosis and treatment of prostate cancer were finalized and published in 2012. 3 BPS representatives served in the patient guidelines commission.

Ad 3. BPS promoted risk adapted early detection of prostate cancer in public. BPS supports and works in the study commission of the Preference Based Randomized Trial for Evaluation of Four Treatment Modalities in Prostate Cancer With Low or “Early Intermediate” Risk:

http://clinicaltrials.gov/show/NCT01717677.

BPS supports the PROBASE study aiming to establish a standardized and risk-adapted prostate cancer early detection procedure:

https://www.probase.de/?page_id=595.

Ad 4. Set of patient centered treatment quality indicators for measuring health results in the treatment

of localized, low and medium risk prostate cancer was completed 2013 by an international group of physicians and patient representatives. The project was supported by the International Consortium of Health Outcome Measurement (ICHOM):

http://www.ichom.org/project/localized-prostate-cancer/ and financed by Movember:

http://au.movember.com/. Publication of this pro-

ject in medical journals as well as a patient paper on necessity and benefits of measuring results will occur this year. ICHOM quality indicators were added to the guidelines on diagnosis and treatment of prostate cancer and were added to the reporting requirements of prostate cancer centers in Germany.

Ad 5. Status and strategy of coordinated prostate cancer research was presented and discussed at two international meetings representing BPS and EUomo. EAU has agreed to work with EUomo and BPS on developing a plan for coordinated research in pursuance of the EU research program horizon 2020.

Ad 6. 95 prostate cancer centers have been certified in Germany. Certifications are contingent upon fulfilling structural innovations and results relevant to objectives set by the national certification committee. Centers will be tested and re-certified bi-annually. Centers must report health results of patients during their entire live cycles. One BPS representative serves in the certification commission. Most of the centers have cooperation agreements with one or more BPS support groups.

The initiative for bringing about prostate cancer centers in European states at large has matured and is close to finalizing the structural aspects and results requirements for centers certified in Europe. One BPS and EUomo representative serve in the relevant work group Ad 7. Several BPS representatives serve in various

public health groups http://www.english.g-ba.de/

and other commissions in the interest of prostate cancer patients and their significant needs. There, patient representatives are highly welcomed, have gained a reputation as knowledgeable, determined and co-operative advocates of their fellow patients. Ad 8. An annual status and strategy conference of all stakeholders in prostate cancer care is considered a highly influential, advancement promising tool for patients and the BPS. As we can account for substantial progress in the achievements of our other goals, we feel ready to now tackle BPS goal 8 during the months ahead.

The 240 BPS local support groups, 7 regional/state co-operations and 9 BPS committees call upon a good deal of organization and motivation for working the 120.000

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voluntary hrs/annum:

http://www.prostatakrebs-bps.de/images/pdf/ueber_den_bps/bundesverband_prostatakrebs_selbsthilfe_geschaeftsbericht_2012.pdf. In order to assure quality and reliability in BPS

services information and education for support group leaders are provided by means of 9 seminars and 9 online lectures, more than 30 BPoSt and 3 BPS

Magazins, http://www.prostatakrebs-bps.de/bps-magazin, per year.

The BPS home page with more than 600 pages of prostate cancer information and between 3.000 to 4.000 clicks per month is another valuable source of information. For those wanting to communicate with other patients about our disease the BPS/KISP online

forum, http://forum.prostatakrebs-bps.de/, with

more than 80.000 postings and almost 4.000 users is a platform of rapid and diversified information exchange. At almost every hour of the day 80 individuals are simultaneously using this forum.

For patients preferring telephonic information the BPS operates a toll free patient hotline,

http://www.prostatakrebs-beratung.de/, staffed by

trained and experienced BPS members. The hotline is quality controlled to include customer feedback recording and is used by close to 1.000 information seekers/annum.

We could not manage our workload without our highly dedicated staff of professionals in BPS. That goes without saying – but it has to be said, now and right here. Thank you colleagues for your great services.

Most supportive and basic to our abilities and success is the great support from the German Cancer Aid, the Deutsche Krebshilfe:

http://www.krebshilfe.de/nc/startseite.html The German Association for Urology:

http://www.dgu.de/

and the German Cancer Association:

http://www.krebsgesellschaft.de/

are our reliable partners supporting us in the fields of science, medicine and public health.

A hearty thank you goes out to the dedicated full time and voluntary supporters in the EUomo office and the

Oncologic Center at Antwerp, with Prof. Louis Denis who continues giving his support and advice to member organizations of EUomo. Last but not least BPS values the camaraderie with our fellow organizations in EUomo and the many gratifying, personal encounters.

HUNGARY

Regular activities of the Hungarian League Against Cancer in prostate cancer issues. In Hungary the yearly number of new prostate cancer cases amounts to 4000 persons and the mortality rate in the same disease averages 2000 persons. Many of the new prostate cancer patient cases are already frequently diagnosed late and the disease is already at an advanced state. This is one of the main causes of the high mortality rate. The main cause of this tardive diagnosis is the very low level of prostate awareness among the Hungarian male community. Since 2009 the Hungarian League Against Cancer has organized a series of events in order to overcome the problem of the above mentioned low prostate awareness among Hungarian men. Our activities may be summarized as follows:

- Since 2009 we have organized events on prostate cancer every third week in June, as part of the prostate cancer initiative during the European Men’s Health Week. Many local organizations of the League take part in these events. A regular topic in such activities is prostate cancer with lectures and discussions about the necessity of prostate awareness, e.g. last year more than 20 of our local organizations organized such events in the European Week of Men’s Health and attracted about 2500 participants. Beside the health promotion lectures, time is dedicated by the organizer to prostate screening by the participants with the help of an urologist and, in addition to such possibilities, some PSA screening is also affected.

- The Hungarian “Movement Movember” has offered a screening device for PSA screening as from 2012 and we can use it regularly and not only during the European Week of Men’s Health, but also during local “Health Day” events.

Europa Uomo / Did You Know? 01-2014 10

- Thanks to the help of the Movember Movement and a pharmaceutical company, the Hungarian League Against Cancer has edited two flyers on prostate cancer and the prostate awareness issue. I display above a copy of one of these flyers. Some information is provided about the frequency of the disease and the necessity of a regular medical control once you have reached 50, as well as some information about PSA screenings.

- The Hungarian League Against Cancer in Budapest organizes a Men’s Health Club. The participants are mostly prostate cancer patients. The members of the club meet monthly.

- The Hungarian League Against Cancer has lobbied with the National Health Insurance Fund for financial aid for the new medical care for bone metastasis of prostate cancer patients and these activities have been very successful.

- In the yearly conference of uro-oncologists in Hungary, the Hungarian League Against Cancer regularly presents the activities of the League in the various prostate cancer events.

ITALY

The PerSTEP project – A practical and theoretical approach in the uro-oncological sector Tiziana Magnani, Manager of the Prostate Project Programme organized on behalf of SIURO and CIPOMO, Italy

The international scientific community now recognizes that the multi-disciplinary and multi-professional approach in oncology assures the optimum treatment of patients in all phases of prostate cancer as well as assuring the best response to all therapies and, at the same time, favours the timely adoption of re-abiliative and integrative therapies and an efficacious reaction should the disease eventual re-appear.

The respective competence and synergy which is assured by the presence of specialists in all fields, an indispensable requisite for a multi-disciplinary and multi-professional approach, are invaluable factors in the treatment of prostate cancer which, according to the state of the disease, may thus be coped with by means of a whole series of therapies such as surgery, radiotherapy, brachytherapy, hormone therapy, chemotherapy, or simply by monitoring the advancement of the disease by means of periodical controls known as “active surveillance” or “watchful waiting”.

In other words a team of a whole series of specialists and therapies who are involved in the diagnosis and treatment: a urologist, an oncologist, a radiotherapist, an oncological doctor, that is without overlooking, above all in certain phases of the cure (diagnosis, therapeutic and re-abilitative, andrological, physio-therapeutic, geriatric, specialized nurses, psychological, radiological and uropathologic aspects). The interaction of a team of experts organized and structured in this manner places the patient at the centre of attention, enabling him to also participate in the choice of the therapies according to the declared objectives of the same, thus avoiding any controversy on the choice of options and multiple consultations which favours the adoption of the optimum therapies.

This theme has been at the centre of scientific debate for some years. That is bearing in mind the Discussion Paper of the European School of Oncology entitled “The requirements of a specialist Prostate Cancer Unit” of 2011; the editorials of Louis Denis, urologist and for many years General Secretary of Europa Uomo; the contributions of Leonard Gomella, Director of Urology at Thomas Jefferson University of Philadelphia, who set up the first multi-disciplinary clinic some 18 years ago; Riccardo Valdagni, Director of Radiotherapy, Oncology 1 and of the Prostate Programme and head of the Prostate Cancer Unit at Istituto Nazionale dei Tumori of Milan; or the space dedicated to this subject by scientific bodies in their periodic congresses. However, unfortunately, while several European countries such as France, Germany, the United Kingdom and the Netherlands have developed such Multi-Disciplinary Centres for patients suffering from prostate cancer, other countries including Italy still deal with prostate cancer solely or mainly in a monodisciplinary manner which leads to the fragmentation of medical information which both advises and obliges the patients to contemplate the consultation of a number of specialists in a variety of medical therapies.

This has recently led to the birth of the PerSTEP project, a practical and theoretical programme in the uro-oncological sector. An educational project promoted by the Società Italiana di Urologia Oncologica (SIURO) together with the Collegio Italiano dei Primari Oncologi Medici Ospedalieri (CIPOMO), coordinated by Giario Conti, Roberto Labianca and Tiziana Magnani.

The main objective of this initiative is a radical cultural change in favour of a multi-disciplinary and multi-professional approach for the treatment of patients suffering from prostate cancer. That is promote the re-organisation of medical centres also by a sharing of data and experience.

The PerSTEP project was launched in June 2012 with the participation of four centres: Istituto Nazionale dei

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Tumori in Milan, Ospedale Sant’Anna of Como, Policlinico Sant’Orsola Malpighi in Bologna, and Ospedale Giovanni XXIII in Bergamo. This amounted to a project developed by a variety of medical centres, some already operating in a multi-disciplinary manner, whereas others that had chosen to adopt a multi-disciplinary approach for the future treatment and cure of prostate cancer.

Since that date PerSTEP has received the request of numerous specialists to join the project and, in June 2013, PerSTEP inaugurated Phase Two. Twenty further medical centres have expressed their wish to participate in the PerSTEP project and are at present re-organising themselves in order to adopt a multidisciplinary and multiprofessional approach able to adequately respond to all the needs of patients suffering from prostate cancer.

The PerSTEP communications project is also supported by SANOFI, a leading global pharmaceutical company also present in Italy.

LITHUANIA

The Lithuanian association of prostate cancer patients is a non-profit, non-political, non-governmental organization, established in 2000. The association aims to mobilize efforts and actions supporting the implementation of a common Lithuanian people's expectations of the prostate cancer control for full implementation. Now one of the main objectives of the association is to ensure an effective early prostate cancer detection program.

This program has been operational in Lithuania since 2006 and has shown most promising results. A steady decline of stage III prostate cancer incidence was observed. The study showed that early prostate cancer accounted for 60.9% of the cases in the study group (other countries reached 80% and more). It was proven that an early detection program significantly increased the chances of men to be diagnosed with prostate cancer at an early stage and decreased the mortality rate among men from prostate cancer.

Our association aims to add a prostate cancer early detection program to the list of other screenings (breast, colorectal and cervical cancers). At this moment it is the most important goal of the Lithuanian association of prostate cancer patients. We strongly believe that other European countries will agree with us.

PORTUGAL

Portugal – How a difficult period may promise better days! Joaquim da Cruz Domingos, APD Prostata, Portugal

The Portuguese Prostate Patients Association was born officially in 2004. Today, after 10 years of activity the Association is again in a situation that looks like a start up.

In the last two years we have lost half of the Executive Board - the Founder and President, the Relations with the Industry Director and the Treasurer. These enthusiastic members were the main pillars of the Association, all very motivated and active in their fields. On different dates, the three gentlemen passed away.

Now, it is like restarting everything from the beginning.

At the 2013 General Assembly a new Executive Board was elected, but most of the seven members were not well prepared to start at once, doing what it was expected from them. But, difficulties many times reveal unknown capacities and now, after only one year, things are starting to happen and new ideas are in the air.

One of our first actions was to make the most from what we had already: the local newsletter, the website, the SOS public phones and a more frequent, direct and personal contact with Association members.

The local newsletter is now more directed to outside subjects about prostate, covering news not well covered by the Media. This is only possible thanks to an exhaustive work of research done by volunteers to find news and information through the Internet about prostate cancer, that does not usually appear in the general mass media and press.

The website is becoming more attractive, as we have now created a special space for short questions from visitors that can be answered in as little as 48 hours. This very recent initiative is proving very promising, as

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we are receiving three or four inquiries every day. If on one hand this represents a lot of work to do, on the other hand it shows how our visitors are “hungry” for answers. Still through the website, with one phone line working four hours a day every working day, we have now evolved a second line working mainly at night 6 hours a day, every day of the week. The new members of the Executive Board are now much more aware of the real needs of prostate patients and their families, and new projects are starting to arise. Probably not all will become possible to put in practice, but others are very interesting and will just need a more focused workload around the basic ideas. The present team is working very hard, and promising results look likely to start to show up.

Within one year or so we hope to have recovered from the difficult moments lived in 2012 and 2013.

As we are used to say, “hope” is the last thing to die!

SPAIN

The Code of recommendations against prostate cancer. FEFOC/Us Too have recently produced a set of 16 recommendations against prostate cancer. Some samples of it have been already sent to the Europa Uomo Secretariat. They have been written in Spanish although a future action is to translate the Code which is in Catalan (our mother language) into English. The Code enjoys the auspices of Europa Uomo and Prostatenet Europe. Some 60.000 samples are distributed among 500 Spanish hospitals (mainly to Urology and Oncology Nurses). The distribution is done by the network of Ipsen Lab. On the other hand FEFOC itself is distributing another 9.000 samples among Associations, Administrations, civic centres and other Foundations. It is the first initiative of that type organised in Spain.

Recommendations 1 to 4 give information on age risk, life style risk factors and hereditary predisposition. From recommendation 5 to 8, the Code deals with early diagnosis and the need to consult with a multidisciplinary team. From recommendation 9 to 12, treatment options are outlined and eventual secondary effects are specified. Lastly, from recommendation 13 to 16, support and changes in previous attitudes.

Among us prostate cancer is a big and little known disease. For instance, there are no famous people who openly confess any such diagnosis through the media in great contrast with the Spanish women who suffer from breast cancer, who always comment on their condition and receive and give each other cooperation and psychological support.

We hope our initiative with the Code will help to change some old fashioned attitudes predominant in our males and in our country. We do not know of the existence of Codes against prostate cancer in other languages and in other countries. Nevertheless from hereon we propose that Europa Uomo collects the different versions produced by the members of our European organization in order to design a comprehensive one reflecting this important activity as a whole.

Online activities. The FEFOC’s online page (www.cancerdeprostata.org) is very active.

Generally speaking we are asked more frequently by patients’ relatives than by the patients themselves. Nevertheless sometimes it is very difficult to answer. For instance, in the case of young patients when they are telling us the drama of their life after prostatectomy and impotence. As all of you know they suffer from very serious problems ( as couples, at work, from depression, or a lack of understanding). We have no solution at present. We desperately need better and less aggressive treatments especially for young patients. Urologists, industry, Europa Uomo, all of us must ask ourselves: Are we doing enough for those young patients? We need more resources, more dedication, more imagination and new ideas.

Support groups and psychotherapy. FEFOC is a leading support group which has been devoted to prostate cancer patients since 2000. These groups are always conducted by an oncologist and a psychologist, and sometimes have other professionals to explain some topics of general interest. Different themes are treated in the sessions (held monthly), from treatment related questions to quality of life aspects. Also news on prostate cancer are discussed.

When needed, individual or couple therapy is offered. We organize public educational meetings on prostate cancer every three years in order to inform the public about this cancer and inform them on the latest treatments and psychosocial aspects.

SWEDEN

2013 has been the most active year in the history of the Swedish Prostate Cancer Federation Torsten Tullberg, Prostatacancerförbundet, Sweden

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The year of 2013 was the year that we surpassed almost every single target. Successful lobbying paired with active media participation pushed prostate cancer front and centre – making it a disease that more and more people talk about.

1.Regional meetings and training sessions were held in several cities during the spring.

2. The Annual Assembly was held in April. Most of the Federation’s steering documents were revised and six proposals were addressed – all during lively debate.

3. For the second time running the Federation carried out a nationwide prostate cancer campaign involving more than 160 activities (100 activities in 2012), most of which took place in September.

4. We have received considerably more attention from the media in the form of TV and radio coverage as well as articles in many newspapers around the country.

5. We have been active in social media: Facebook (the number of followers for the Swedish Prostate Cancer Federation more than doubled in 2013), Instagram and Twitter.

6. We started selling the Blue Band pin through the pharmacy chain Apoteksgruppen and produced the Blue Moustache pin.

7. The Federation created a brand new website that has twice as many visitors.

8. The Foundation has received more revenue and can allocate more. The Foundation has become better known, resulting in more applications for research grants and more scholarship applications.

The Swedish Prostate Cancer Federation is a nationwide organization with 26 patient associations that work to increase knowledge about prostate cancer and provide support to men with prostate cancer and their relatives. Moreover, the Federation lobbies for better care, supports research and competence development, and influences public opinion through its own foundation.

At the start of 2013, the number of association members totalled 8,228, growing to 8,823 members by the end of 2013 – a 7% increase.

Contactperson: Calle Waller calle.waller@partnershipforeurope.se +46 70-552 73 15

If you want to know more about what we are doing you can read our annual report from our website: http://www.prostatacancerforbundet.se/PROSTATA/uploads/ANNUAL%20REPORT%20140408.pdf

The Blue Moustache Torsten Tullberg, Prostatacancerförbundet, Sweden

In 2013 SPCF designed a new symbol, the Blue Moustache, and an Instagram account with the same name was set up. The Blue Moustache is used to generate a broader interest in prostate cancer and is used in collaborations to communicate with people interested in men – fashion – food – sports while supporting the fight to beat prostate cancer. During the year, an agreement was signed with the Swedish Automobile Sports Association to arrange fundraising during the Safari Rally and the Stockholm-based race, Midnattsolsloppet. In December, the Federation had a rewarding collaboration with the restaurant Sturehof, which sold Blue Moustache pins in its bars, and even had lamb testicles on the menu – the profit from which went to the Swedish Prostate Cancer Foundation. Sturehof also helped us to arrange a Blue Moustache launch party to which those closely affiliated with the Federation were invited as well as the motorcycle club, Piston Cult. Media coverage of the party was good and it topped the list in Resumé’s online paper, Sydsvenskan and GP.

Wearing stylish cycling outfits, Roberto Vacchi and Rickard Herrey cycled 150 km in the Halvvättern bike tour to bring in SEK 169,000. Rickard Herrey says it is important to support the fight against prostate cancer. This was the second year that Roberto Vacchi took the initiative to complete the tour to raise money for the Federation’s foundation. In addition to more money for research, the event helped highlight the battle against prostate cancer.

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UNITED KINGDOM

New wonder drug for prostate cancer to “offer vital lifeline” to thousands of men Andrew Gregory, Mirror Online, May 9, 2014

Enzalutamide has been given the go-ahead for use by the NHS, and could help save the lives of patients suffering with prostate cancer. A wonder drug for fighting prostate cancer has been given the green light for use on the NHS. The National Institute for Health and Care Excellence said enzalutamide, also known as xtandi, should be offered to men in whom the disease has spread to other parts of the body.

Prostate cancer patients’ charity Tackle said: “This offers a vital lifeline to thousands of men facing death

sentences due to the limited options for treatment if chemotherapy has failed.”

Previous draft guidance sparked an outcry when Nice said it should be recommended, but stipulated patients could take it only if they had not previously used the drug abiraterone. The condition was cut from the final guidance document published today.

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Europa Uomo booth at the 29th annual congress of the European Association of Urology in Stockholm, April 11-15, 2014.