Access to Care for Access to Care for Prostate Cancer Prostate Cancer

PatientsPatients

A Patient`s PerspectiveA Patient`s Perspective

Some MythsSome Myths Only a few old men are affectedOnly a few old men are affected

No - It affects 190,000 men and kills 75,000 in Europe per year. No - It affects 190,000 men and kills 75,000 in Europe per year. It is not a social problemIt is not a social problem

Yes it is - 80% of the men in their 80s have Prostate Yes it is - 80% of the men in their 80s have Prostate Cancer, the detected incidents are increasing due to PSA-Cancer, the detected incidents are increasing due to PSA-TestsTests

It is only an old men`s diseaseIt is only an old men`s disease No - No - Prostate Cancer has been known to affect men even in the Prostate Cancer has been known to affect men even in the 30 - 40 age group, the death rate is higher among younger men still 30 - 40 age group, the death rate is higher among younger men still productive in the economyproductive in the economy

There are only Surgery, Radiation or Wait and See availableThere are only Surgery, Radiation or Wait and See available No - No - Increasing evidence for hormonal therapy Increasing evidence for hormonal therapy supports a new role in treatment of Prostate Cancer or Active supports a new role in treatment of Prostate Cancer or Active SurveillanceSurveillance

Prostate cancer needs to be curedProstate cancer needs to be cured No - you can live and die with prostate cancer, not from itNo - you can live and die with prostate cancer, not from it

Urologists have a clear perception what to doUrologists have a clear perception what to do No - No real consensus on diagnosis and treatment No - No real consensus on diagnosis and treatment - - until until now…..now…..

SURGERY

OPENLAPAROSCOPIC

RADIATION

EBRXT BRACHY

CHEMODRUGS

HORMONESPHYSICAL AGENTS

CRYOHIFU

W.W.

THE PALETTE OF TREATMENTS HAS THE PALETTE OF TREATMENTS HAS MANY COLOURSMANY COLOURS

The Doctor‘s The Doctor‘s ConsultationConsultation

I can offer you three options, like I can offer you three options, like a manu in a restaurant :a manu in a restaurant :

Radical prostatectomyRadical prostatectomy Radiation Therapy.Radiation Therapy. Watchful WaitingWatchful Waiting

You have to decideYou have to decide

Consequences:Consequences:

Anxiety and InsecurityAnxiety and Insecurity

Doctors !

Audio Visual Media

Congresses

PCa Support Goups

Print Media

Internet

Experimental Therapies

Complementary Therapies

Alternative Therapies

PC-SPES

Savior

Psycho Market

The Patient The Patient in the middle of a in the middle of a field of tensions field of tensions

and stressand stressdue to too many due to too many

andandoverwhelmingoverwhelming information information

sourcessources

How Men Use Tools

The one who has,The one who has,

The one who has The one who has

very often can see only nailsvery often can see only nails..

will…will…

The one who has a linear accelerator

wants to ...

In the middle of an emergency situation the patient becomes a customer, the target of high efficient salesmen!

He realises that there are information und communication problems and that there is an

asymmetric communication with those whom he turned to for help.

The only way out is he has is to become an empowered patient

Reality in Europe Reality in Europe PCa is a European Health Problem PCa is a European Health Problem

and a Social Disgraceand a Social Disgrace

- Low public awareness- Low public awareness- Low government priority- Low government priority

- - Difference outcomes rich vs poor.Difference outcomes rich vs poor. - - Gap between knowledge and real careGap between knowledge and real care - Effective Medication (Hormone Treatment - Effective Medication (Hormone Treatment and/or Chemo) not available in all countries and/or Chemo) not available in all countries

- Potentially curable, but certainly treatable if - Potentially curable, but certainly treatable if diagnosed early enough. diagnosed early enough. - Early detection (PSA-Test) strongly criticised- Early detection (PSA-Test) strongly criticised - - Gap between prevention/treatment.Gap between prevention/treatment.

Partially from OCA, 2003Partially from OCA, 2003

The Expedition into the Future of Urology

I had a dream

The Crew:

Patient

M.D

Clinics, Universities

Cancer Societiest

Research

Health Ins.

Patient – Urologist –Oncologist -Radiation Specialist - General Practicioner - ……

Politics

Interdisciplinary Network

Industry

We, the Patients call on you, We, the Patients call on you, the Politicians the Politicians

Each patient should have the right Each patient should have the right to receive an interdisciplinary consultation in to receive an interdisciplinary consultation in

a centre of competencea centre of competence to have the chance to receive his individually to have the chance to receive his individually

preferenced primary therapy preferenced primary therapy to receive the best therapy without a to receive the best therapy without a

dependency of his personal budgetdependency of his personal budget to be taken care of on a humanitarian basis, to be taken care of on a humanitarian basis,

not by medical sales mennot by medical sales men