Cystic Fibrosis Europe
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Towards Equal Access to Appropriate Care For All CF Patients in Europe
Cystic Fibrosis (CF or Mucoviscidose) is the
most frequent life threatening genetic disease in Europe. In some countries the median age at death
of people with Cystic Fibrosis is more then 35 years, in other countries the majority of children
die before their 5th birthday! Guidelines for best standards of care were developed to ensure
appropriate treatment in Europe. In clinics where these guidelines are followed and appropriate care
is provided life expectancy is now more then 40 years old. Most children have few symptoms and
serious problems can be delayed until adulthood. In regions where the disease is not yet well known
and access to appropriate care is poor, the life expectancy and quality of life are still very
low.
Some CF patients get to 40 years old…others 4, depending on where they
live in Europe
All over Europe a lot of patients are never diagnosed and too many patients
die too young. But there are major differences between regions.
A survey on CF in Europe
indicates that about 50 % of the persons with CF are 18 years or older in countries where CF care is
well developed, in other regions this is less then 20%. In some countries people with CF get to 40
years or older, in other countries the average age at death was less then 4! In countries where CF
knowledge is low, the majority of patients are not diagnosed and if diagnosed, patients have poor
access to specialized health professionals, essential medication and medical materials needed to
survive.
Access to appropriate CF care is inefficient
throughout Europe
Although the living conditions of CF patients are especially hard in
most of the new EU countries, the deficiencies in CF care and access to appropriate care or not
limited to this region. Problems to get access to care occur in countries with weaker and stronger
economies and poor access to optimal care is limited by other than financial barriers.
Some
examples from the EU:
• In Belgium
1 of 7 patients have to ask the national patient association for financial help to cover the
treatment costs.
• In Germany only 50% of the treatment costs are paid by the German health care
insurances. The other 50 % have to be covered from other sources like donations, research projects
etc. Therefore the German CF association with a budget of € 500 000 in 2006 as well as the
Christiane Herzog Foundation set up financial programs to support CF clinics.
• In Greece the
number of hospitals, single-bed rooms as well as medical staff who have received special training
for CF is small or non-existent.
• In Ireland the median age at death in 2000 was only 17
compared to 30 years in neighboring regions.
• In Latvia only 6 % of patients are diagnosed;
there is no specialized CF center, only one doctor interested in CF
• In the UK nearly 1/3 of
patients face problems obtaining adequate life-saving treatment according to a survey of the Cystic
Fibrosis Trust in 2004
Deficiencies in CF care in Europe due
to more then financial barriers!
The above examples and the CFE Survey on Data on CF
clearly show that access to appropriate care is not only limited due to financial means. CF care in
Europe should and could be improved, without necessarily having to invest a lot of money.
European Standards of care offer best guarantee to optimal
care
For more than
40 years now the CF community, patients, their families, doctors, other caregivers and scientists
have been struggling against Cystic Fibrosis. Today scientific and medical knowledge about the
biological causes of CF and the way to treat this disastrous disease is far advanced. In 2005 a
European Consensus of Standards of CF Care was published in which 36 experts from 15 European
countries, the USA, Israel and Russia were involved. In countries offering well developed CF care in
hospitals which follow these guidelines about 50 % of the CF patients are 18 and older, and the
average life expectancy is 40 years and more. The lives of CF patients depend on correct treatment
according to these standards.
Strategies to improve
care with relatively little investment
• In the
treatment of CF, preventing complications is a priority. This can prolong and save lives, but also
save extra health costs. It’s more expensive to treat severely ill patients in the hospital then to
pay for the essential medication that can be taken at home to prevent symptoms. If a patient is a
regularly checked by specialists trained in the treatment of CF and receives the correct
antibiotics, as soon as an infection occurs, expensive and uncomfortable hospitalizations can be
avoided.
• An adequate number of CF clinics observing the above mentioned European standard
of CF should be established in each European country. In some countries no specialized clinics are
available (or not within reach of a majority of the patients), in other countries CF care is spread
over too many clinics where the staff is insufficiently specialized and experienced. This costs a
lot to society, but also endangers the CF patient’s lives.
• Prevention of infection in the
clinics by proper hygienic and segregation measures is essential to improve the quality of live and
the survival chances.
• Offer the
essential treatments for free. We realize that some countries done have the means to reimburse all
necessary medication and care. Therefore it is important that authorities discuss with patient
representatives and specialists which are the most needed treatments. In several countries basic
treatments are not available while other, more expensive but less essential, medication is
reimbursed.
• Offer training and education for CF patients and their families on CF and home
care (e.g. use of medication, physiotherapy to clear their lungs from the sticky mucus and high
calorie diet to prevent malnutrition).
The EU can help
to improve access to care in Europe!
According to
the World Health Organisation the right to the highest attainable standards of health is an
inclusive right which includes timely and appropriate health care as well as a right to the
underlying determinants of health like availability, accessibility, acceptability and quality of
health care.
The 30.000 European citizens with CF need the support of the EU to obtain this
right. CF patients and their organizations who are often struggling hard to obtain at least some
basic treatment need support from the European level.
• We count on the members of the
European Parliament to urge their national governments to improve adequate access to CF care
according to the European standards.
• We ask the EU to initiate a European report on CF
treatment to analyze the differences in CF care and the influence on the health outcome.
•
Attention for CF, considering the strategies and priorities of CF patients described above when
funding projects. The current set up of application procedures makes it virtually impossible for
patient associations such as CFE to apply. But with relatively small budget we can realize projects
with a major impact.
Ongoing efforts of CF patients, families, associations, health care workers and researchers
will lead to better and more accessible CF care, and better and longer lives for all CF patients in
Europe. But the patients don’t have time to wait too long...
At this first European CF Awareness Day on 21 November 2006,
CF Europe, together with its member associations from 30 different countries, urges European and
national authorities to do everything in their power to support these efforts and to take away all
barriers to equal access to the basic treatment standards for all European CF patients.
And remember… CF patients
don’t have time to wait too long.
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