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Newsletter 02/2012
14thJune 2012
european umbrella
organisation for
psoriasis movements
The
Dear member of EUROPSO,
As you can see the new infoletter of EUROPSO has
a different format, this format is in line with our new
website and leaflets.
You will all be aware that the IFPA congress in Stockholm
is getting close and of course EUROPSO will be present.
We will also have a booth at the exhibition area with information about the latest EUROPSO projects. We hope that
we will be able to meet some of you in Stockholm!
Best wishes,
The Executive Board of EUROPSO
Professor Günter Schäfer
It is with deep regret that the EUROPSO board has
to inform you about the death of Professor Günter
Schäfer. Günter Schäfer was one of the founders
of EUROPSO and a former president of our organisation. He was also the pioneer for Fumarate.
Professor Günter Schäfer was 88 years old.
Prof. Günter Schäfer
Situation Poland
Seeing as all eyes are directed at Poland and the Ukraine
for the European Football championship, we thought it
was time for an update about the situation in Poland for
psoriasis patients.
Poland is the only EU country that does not reimburse the
biological drug therapy for patients with the most severe
forms of psoriasis in a manner allowing full access to all
patients in need of such treatment. This therapy is the
chance for a complete remission and stopping the further
formation of skin which means stopping the progression of
the disease. These drugs by stopping the illness allow
the most seriously ill patients to simultaneous normal life.
Currently, in Poland, a small group of patients are in use of
this therapy but the treatment does not proceed on the
basis of the therapeutic program, although it had to be
implemented and everything was prepared in December
2011 (see repeated promises of the Minister of Health Ewa
Kopacz and Deputy Minister Andrzej Wlodarczyk) Until
now, patients with psoriasis do not have access to drug
programs which supposed to replace the therapeutic
programs. Biological treatment which is theoretically
available from hospital services does not provide
treatment to all patients in need.
It is estimated that in Poland there are between 800
thousand to 1.2 million people suffering from psoriasis.
Availability to provide biological drugs improve the health
of only around 1-2 thousand patients. Contracts with the
NFZ for dermatology are very low priced.
As a result of undercutting dermatology contracts:
Many dermatological sites are closed or heavily
reduced.
Fotodermotherapy, very important basic treatment,
minimally invasive method of treatment of many
diseases including psoriasis brings providers financial
losses and is offered in a few centers.
The introduction of biological treatment in a hospital
under standard contracts puts dermatologists in
the position to decide whether to treat most severe
patients and have empty hospital beds or give treatment to less sick patients with traditional methods.
Therefore selecting the first of these possibilities results
in a reduction of the number of beds in hospital by the
hospital management and ultimately reduces the availability of hospital treatment of skin diseases.
There is a lack of psychological support for patients
(both in hospitals and in clinics), which is standard in
other countries.
There is no possibility and availability of more accurate
diagnostic tests. It is now known that psoriasis is often
associated with other diseases which mean there is a
serious threat to patient’s life. Treatment of psoriasis
should be associated with the diagnosis of the full
body to detect provocative factors of psoriasis, also
detection and treatment of associated illnesses.
There is improper functioning of referral systems to
sanatoriums after hospital treatment. Referral received
after staying in hospital for several months is not a
continuation of treatment. What more it can shorten
the duration of remission and cause a rapid return to
the hospital which means increased costs of treatment
of the patient.
Psoriasis is not included in the National Health
Program for 2007-2015
Introduction of a therapeutic program for LZS in December
2011 revealed a very serious problem. The difficulties with
getting to the program have patients who have previously
received biological drugs based on other terms for example
through hospital services or through research programs
and drugs have helped them. Because of that currently
these patients do not have severe enough symptoms of the
disease to qualify for the biological treatment program that
is; paradoxically they have to wait for the disease symptoms
to come back and are breaking current treatment of the
disease.
In a letter given to the minister of health and the
President of the National Health Fund the problems as
described above were pointed out and questions about
these problems have been asked. In addition, under the
guidance of prof. A. Kaszuba, National Coordinator for
Dermatology there is an action conducted for „1000
signatures for thousands of patients” It‘s about gathering
thousands of signatures from dermatology doctors
who support the introduction of biological treatment
program for patients with psoriasis.
Fashion show Ireland
On the 3rd of May last a new support group was
formed in Ireland‘s second city Cork. To mark this there was
a fashion show held. The title of the fashion show was “Dare
to Reveal” in which all the models on the night shared one
thing in common; they all suffered from psoriasis. There are
approximately 10,000-15,000 sufferers in the Cork city and
county region alone.
Special guest on the night was the runner up in the
presidential campaign and successful business man, Mr.
Sean Gallagher who is also a psoriasis suffer. Also present
were Mrs Caroline Irwin, from the Psoriasis Association of
Ireland and Mr. Ronan Farrelly of Europso.
It was estimated that almost 250 people turned up on
the night with many others buying tickets although not
being able to attend.
A big congratulations must go out to the organising
committee Theresa Tierney Bugler, Lisa O Connor and
Siobhan Hurley, who over the previous number of
weeks brought the show from a concept to reality.
From the left: Theresa Tierney, Sean Gallagher, Trish Gallagher,
Lisa O Connor & Caroline Irwin
30 Years Psoriasis League Flanders
In this year, 2012, the psoriasis patient organisation
of Flanders, Psoriasis League Flanders, is celebrating
its 30 year existence. This will officially be celebrated
on the 20th of October at Elzenveld in Antwerpen.
The motto of that day will be: “Happy Pso day”.
Apart from several secondary activities there will
be four panel discussions:
1. Young and active people with psoriasis
2. Older people
3. People with psoriasis arthritis
4. Happiness brought by Leo Bormans, the author of
the book “Happiness”. This performance will take
more than one hour.
The first three panels will be presented by Andrea
Croonenberghs, a well know actress from the popular
Belgium police series “Flikken”.
In the context of the 30 year existence of the organisation
the president of Psoriasis League Flanders, Paul De Corte,
wrote the following article:
“Soon we will be able to treat our psoriasis online”.
With that thought I woke up on a freezing morning. The
medical developments are going at a phenomenal rate
and everything that is new can immediately be found on
the internet. “This way we will soon be our own doctor”,
I fancied on. But better informed than before, we now
want to have our own say at the doctor. We want to determine how and which treatment we wish. And just maybe
a tailored treatment is not as far away. Because both
patient and doctor have their contribution; the doctor gets
his wisdom from medical data and practice, the patient tells
about his own experience in coping with a skin disease
and the treatment of that.
What the patient contributes is definitely not of less
im-portance, often it is about the quality of life. The
pharmacy has understood that. Whether or not people
are being treated in a comfortable way determines, in a
large part, the quality of life for the patient. How easier
and more effective the treatment, the more faithful to
the treatment, the bigger the quality of life! And let us
be honest: scientist and pharmacies, they really do
their best for us.
But despite the beautiful perspectives and great
medical developments, I am worried. We are at the
point of losing sight of each other. Everybody is fighting
their own battle. ‘If only I can find something that will help
me’ is becoming the new device. Thirty years of psoriasis
association can not end in ‘every man for himself’. Can it?
And still it looks like the patient in the 21st century is only
concerned with his disease/his health and looses track of
the bigger picture. We do get better informed thru the
internet but we still need each others support and experience. We need each other with our disease. To ‘know’
more is very important but it does not necessary lead to
more happiness. You must be able to share happiness! I
don’t get really happy when someone says: “When my
psoriasis staid away, I left the association and now that
my psoriasis is back I rejoin the club.” Or that young
person who only wanted to help if it would get him in
Israel for financially great conditions. He wasn’t interested
in the rest. Or those countless callers and emailers who try
everything to get information without having to become
a member. It brings us to the questions of the sense and
nonsense of our psoriasis association. What do people
with the same disease gain from a self help group?
The most important thing, I think, is that people
realize that they are not alone with their disease! Several
researches show that psoriasis patients are defensive. We
often lead an ‘armored’ existence because our skin disease
doesn’t look good and can never be fully tucked away
or cured. In that respect is the effect of contact between
partners in misfortune is of great value. Fellow sufferers
realize better than anyone else that in the heat of the
battle others experience the same as they do. Psoriasis has
a waving, unpredictable and erratic progress and at certain
times people need others. Our psychological capacity is
not always the same. A fortifying word at the right time
can do wonders.
Apart from passing on information, our association
also has the job of representing the psoriasis patients,
a bit like the unions do for their colleague employee.
The bigger the solidarity the more one achieves. What
an individual cannot achieve can maybe be realized
with the power of the number.
This year, 2012, our association exists 30 years. In 1982
psoriasis was seen as a dirty, shadowy skin disease, about
which you would better keep quiet. Nowadays nobody
with psoriasis has to hide. And you have to come from
outer space to not have heard about the disease.
Contact Information
EUROPSO Secretary
André Cats
Kimwierde 420 NL
1353 EZ Almere
Tel (0)031 365 313 052
Mobil (0)031 621 560 918
[email protected]
www.europso.eu