I pazienti infertili in Europa: situazioni legali e mediche a confronto

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• I pazienti infertili in Europa situazioni
  legali e mediche a confronto
• The infertile patient in Europe
• Legal and medical situation -
• or the negative impact of fertility tourism
• Conrad Engler
• Secretary
• of
• Fertility Europe
• European Patient Umbrella Organisation
• Milano, 16th February 2008

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Who we are

• Fertility Europe has officially been founded on
  the 19th November 2007.
• Fertility Europe is an association of European
  organisations, democratic, independent,
  non-profit and neutral in terms of political and
  religious affiliation, representing those having
  difficulties in conceiving.
• Fertility Europe aims to be the voice of those
  affected by difficulties in conceiving,
  particularly in relation to human rights.
• Fertility Europe undertakes political advocacy in
  the interest of people with difficulties in
  conceiving on the European level focussing on the
  European Commission in Brussels and the European
  Parliament in Strasbourg.

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Founding Committee

• Chair Geertrui De Cock Belgium
• Vice Chair Denisa Priadkova Slovakia
• Secretary Conrad Engler Switzerland
• Member Clare Browne United Kingdom
• Member José Van der Schoor - Netherlands

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Founding Members

• Infertility Network UK - United Kingdom
• Verein Kinderwunsch (Association Childwish) -
  Switzerland
• De Verdwaalde Ooievaar Netwerk Fertiliteit (The
  Lost Stork - Fertility Network) - Belgium
• Association MAIA - France
• Magna Mater - Hellenic Fertility Association -
  Greece
• Freya - Netherlands
• Obcianske zdruenie BOCIAN (Civil Association
  Stork) - Slovakia
• Asociacion de Ayuda a la Fertilidad - Genera
  (Help to Fertility Association) - Spain
• Lombik Bebi Alapitvany (Test Tube Babies
  Foundation) - Hungary
• Nadace Materskánadeje (Maternity Hope Foundation)
  - Czech Republic

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The Patients Perspective
The main priorities for Fertility Europe and for
those affected by difficulties in conceiving
are - Have access to high quality infertility
investigation, treatment, diagnostic, support,
advice and guidance - To be fully informed on all
assisted conception/ reproduction treatment
possibilities and to accept or to reject the
diagnosis or treatment without any
discrimination. - Education in the field of
protection of reproductive health and a
pro-active approach to family planning.
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The Patients Needs
- Best investigation, diagnostic, consultation
and treatment (golden standards) - Improve the
success rates - Research and development for
innovation and patient friendly solutions -
Education not only about contraception, but also
about fertility and the effects of the age -
Harmonization of the regulations all over
Europe - To avoid fertility tourism because of
restrictive laws in some countries - Reduce
multiples (allow eSET)
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Patients advocacy

• The recognition of infertility as a medical
  condition which causes suffering and as such is
  worthy of reimbursement to provide equity of
  access to proven medical treatments.
• Ways to enlighten people about medical,
  psychological and social opportunities and
  problems associated with infertility.
• - Increased community awareness and understanding
  of the difficulties problems faced by those
  facing experiencing difficulties in conceiving.
• - Public discussion of new and evolving areas in
  of ART in order to promote understanding and to
  facilitate revisions of legislation and
  professional guidelines.

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EU advocacy

• European Commission in Brussels
• Active role in European Patients Plattform
• Direct contacts to the European Commission
• Influence EU via national health authorities
• Joint venture with ESHRE
• Patient organizations and ART specialists work
  together
• European Parliament
• Direct contacts with members of parliament
• Show the influence of different regulations in
  the countries for the ART tourism through Europe
  with negative impacts for concerned couples and
  the donors in poorer countries with an increase
  of fertility tourism

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Legal situation
P Permitted / F Forbidden / N Not regulated
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Reimbursment
Y Yes / N No / - Not regulated or allowed
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Legislation overview

• Huge differences
• There are enormous varieties from extremely
  restrictive legislation up to liberal regulations
  or no legal restrictions.
• Mentality and religion
• The reasons for liberal or restrictive regulation
  are mainly political debates based an mentality
  of the country (Switzerland), the history
  (Germany) and the role of religion (Italy).
• The most restrictive countries
• Italy has in Europe the most restrictive
  regulation
• Followed by Germany and Switzerland
• The most liberal countries
• Nordic countries, Belgium, England

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Legislation overview

• The impact of reimbursement
• There is a clear correlation between the number
  of IVF cycles and the regulation of the
  reimbursement
• The better the reimbursement system, the more
  cycles and the higher the IVF birth rate
• In Germany the reduction of the reimbursement to
  50 of the costs led to e reduction of the
  number of IVF cycles to also 50 !

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Fertility tourism

• European or even global business
• People who can afford it travel for Assited
  Reproductive Treatment (ART) all over Europe or
  even overseas
• The reasons for fertility tourism
• The stricter the regulation is, the bigger the
  interest in fertility tourism
• People ask abroad for in their own country
  forbidden techniques (e.g. egg donation, prenatal
  genetic diagnosis (PGD), elective single embryo
  transfer, help or saver babies, surrogagy
• Lower costs can have an impact (Eastern European
  Countries)

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Fertility tourism

• The effects of fertility tourism
• New clinics in the Italian speaking part of
  Switzerland for couples coming from Italy
• Special offers and clinics in Eastern Europe
  (main reasons price and egg donation without
  waiting lists for patients and stand by donors)
• Aggressive marketing and PR strategies of clinics
  in liberal countries (e.g. Austria, Spain,
  Eastern countries)
• Focussing on selection (gender, characteristics
  and qualities, intelligence a.s.o)
• Specialisation on genetic diseases and testing
• Offer possibilities for same-sex couples

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Fertility tourism

• The negative impact of fertility tourism
• Only rich people can afford it
• Two class medicine
• Lower birth rate in restrictive countries
• Economic loss for the restrictive countries
• Pure financial interests for poor people in
  Eastern countries especially for egg donation
• Lack of quality and monitoring
• Unethical practices

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Fertility tourism

• Recipes against fertility tourism
• Brake the taboo to talk about it and to name it
• Advocacy on the national and European Level
• Harmonization of the regulation in Europe
• Ethical debate about the negative impact of bans
  for patients
• Joint venture in advocacy of patients and their
  organizations with the doctors and the IVF
  clinics
• Address the negative impacts to administration,
  governments and members of parliaments
• Awareness campaigns in the media about the
  positive impact of forbidden techniques for
  concerned people (genetic diseases, help babies
  a.s.o) with the coming out of patients