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Fertility Matters
Europe
For one in six fertility is an issue
Fertility Matters
What is at stake across Europe regarding Fertility for the years to come
1 Who we are .........................................................................................................................2
2. Key facts on Fertility...............................................................................................................4
ART fact sheet June 2010 from the European Society for Human Reproduction and
Embryology (ESHRE)................................................................................................................5
ART fact sheet June 2010 from the European Society for Human Reproduction and
Embryology (ESHRE)................................................................................................................6
3 Its consequences.......................................................................................................................7
4 Medically Assisted Reproduction ...........................................................................................9
5 Ethics .....................................................................................................................................11
6 Equality of Access to Treatment............................................................................................12
7 Criteria to ensure Equity of Access to Treatment..................................................................14
8 Protection, Prevention and Education....................................................................................16
9 Towards a European Pact to address Reproductive Health: Recommendations by Fertility
Europe.......................................................................................................................................19
Glossary....................................................................................................................................21
References.................................................................................................................................22
Correspondence address: office@fertilityeurope.eu
Fertility Europe VZW
Cyriel Buyssestraat 2
9820 Merelbeke
Belgium
1 Who we are
Fertility Europe history and
values
In 2008, a small group of European associations
involved with fertility issues felt the need to
establish a uniting European umbrella
organisation, based on democracy, transparency
and being a truly representative body and voice of
those concerned with fertility problems, in
discussions with the policymakers and the media.
A European representative
association
Today Fertility Europe is the largest and most
representative association of European
organisations involved with fertility issues with
members from over 20 European countries. In
our national organisations we are all involved on a
daily basis with assisting those affected by
difficulties in conceiving.
Our goals
The fact that so many people across Europe need
reliable information on fertility, its protection and
improvement, and on infertility, its treatment and
options has led us to work together and we share
four main goals:
- To improve the rights of those affected by
difficulties in conceiving;
- To build a strong cross border network
amongst European patients and health
professionals in order to achieve the sharing
of best practise;
- To promote societal changes regarding the
perception of infertility;
- To promote education in the area of the
protection of reproductive health and a pro-
active approach to family planning.
Special Families Campaign
All over Europe, people are struggling to conceive
and Fertility Europe has the deepest respect for
those in this position. However, although difficult
for some, they can and do move on, and often
create a special family on their own.
In 2011, Fertility Europe started the Special
Families campaign. We have asked those people
who have had to go the extra mile to become a
family, to share their story through
www.fertilityeurope.eu
The idea is to send a Postcard of Hope, whether
you are a family with children after treatment,
adopted, naturally conceived after years of trying,
still waiting for your dream to come true, a family
of two or other “special” family.
Within a few months we received hundreds of
stories with photographs and strong personal
messages.
Fertility Europe members
Belgium
De Verdwaalde Ooievaar Netwerk
Fertiliteit
http:// deverdwaaldeooievaar.be/
Bulgaria
Iskambebe
www.iskambebe.bg
Sdruzhenie Zachatie
www.zachatie.org/
Croatia
Association RODA
www.roda.hr
Czech Republic
ADAM
http://www.adamcr.cz/
Denmark
Landsforeningen for ufrivilligt
barnlose
www.lfub.dk
Finland
Lapsettomien yhdistys Simpukka ry
http://www.simpukka.info/
France
Maia
http://www.maia-asso.org/
Greece
Kiveli
www.kiveli.gr/
Magna Mater
http://www.magnamater.gr/
Hungary
Országos Lombikbébi Támogató
Alapitvány
http://www.lombikbebialapitvany.hu/
Iceland
Tilvera
www.tilvera.is
Israel
CHEN - Patient Fertility Association
http://www.amotatchen.org/
Italy
Amica Cicogna
www.amicacicogna.it/
The Netherlands
Freya - Vereniging voor
vruchtbaarheidsproblemen
http://www.freya.nl/
Norway
ØNSKEBARN
http://www.onskebarn.no/
Poland
Nasz Bocian
http://www.nasz-bocian.pl/
Portugal
APFertilidade - Associação Portuguesa
de (Fertilidade
www.apfertilidade.org
Romania
SOS Infertilitatea
www.infertilitate.com
Slovak Republic
Občianske združenie BOCIAN
http://www.bocianoviny.sk/
Sweden
Barnlängtan
www.barnlangtan.com/
Switzerland
Verein Kinderwunsch
http://www.kinderwunsch.ch/
United Kingdom
Infertility Network UK
http://www.infertilitynetworkuk.com/
2.Key facts on Fertility
Fertility Europe represents 25 million people who have difficulties in conceiving across Europe
through 23 patient associations and interest groups in 22 countries
0
1 0 0 0 0 0
2 0 0 0 0 0
3 0 0 0 0 0
4 0 0 0 0 0
5 0 0 0 0 0
1 9 9 6 1 9 9 7 1 9 9 8 1 9 9 9 2 0 0 0 2 0 0 1 2 0 0 2 2 0 0 3 2 0 0 4 2 0 0 5
N u m b e r o f M e d ic a lly A s s is te d R e p ro d u c t io n C y c le s in E u ro p e 1 9 9 6 - 2 0 0 5
The first successful birth of a "test tube baby", Louise Brown, occurred in 1978. Since that time over five million
individuals have been born worldwide following in vitro fertilisation. Professor Robert G. Edwards, the
physiologist who developed the treatment, was awarded the Nobel Prize in Physiology or Medicine in 2010.
For 1 on 6 Fertility is an issue
i
One in six people worldwide experience some
form of fertility problem at least once during their
reproductive lifespan meaning that a potential ii
25
million EU citizens are estimated to be having
difficulties in conceiving.
Europe performs the most cycles of
MAR worldwide...
iii
Europe leads the world in the number of cycles
taking place, initiating approximately 54% of all
reported Medically Assisted Reproduction (MAR)
treatment cycles.
... and faces a constant increase
In 2005 the number of MAR treatment cycles in
the EU exceeded 400,000 compared to
approximately 200,000 cycles ten years earlier so
an increase of 100% (see figure 1)
iv
Infertility is a medical condition
Infertility is recognized by the World Health
Organization as a disease and, without
investigations and treatment, this medical
condition prevents people of reproductive age
from fulfilling the life goal of becoming a parent.
v
People should be referred for investigations if
they not have conceived while having regular
unprotected sexual intercourse after 1 year and up
to 2 years. However if there is something in their
medical history which indicates a fertility problem
e.g. amenorrhoea, or where the female is aged 36
or over (given the impact of the age of the female
on the success of treatment), investigations and
possible treatment should be considered sooner.
This includes those diagnosed with secondary
infertility. Secondary infertility is defined as
infertility in a couple who already had at least one
pregnancy. This can be a pregnancy resulting in
the birth of a baby or a pregnancy that has
miscarried, resulted in an ectopic pregnancy or led
to a decision to terminate the pregnancy for
medical reasons.
i
ART fact sheet June 2010 from the
European Society for Human
Reproduction and Embryology
(ESHRE).
http://www.eshre.eu/ESHRE/English/Guidelines-
Legal/ART-fact-sheet/page.aspx/1061
ii
According to Eurostats 2008: 48,7 %
of the 497,4 millions EU citizens are between 14
and 49 years old : 14-25 y. old (12,5 % ); 25-49 y.
old (36,2%) = 242 millions
1/6 of 242 millions = 40,3 millions.
A potential of 25 millions EU citizens are estimated
to be have difficulties in conceiving.
iii
Comparative Analysis of Medically
Assisted Reproduction in the EU:
Regulation and Technologies European
Society for Human Reproduction and
Embryology (ESHRE).
http://www.eshre.eu/binarydata.aspx?
type=doc&sessionId=q1m1djzhvbgxisyxggghuo55/
MAR_for_web[2].pdf
iv
ART in Europe, Publications from 1997 to 2006,
ESHRE
http://www.eshre.eu/page.aspx/1758
v
People who have not conceived after 1
year of regular unprotected sexual
intercourse should be offered further
clinical investigation including semen
analysis and/or assessment of
ovulation. (...)
Where there is a history of
predisposing factors (such as
amenorrhoea, oligomenorrhoea, pelvic
inflammatory disease or undescended
testes), or where a woman is aged 35
years or over, earlier investigation should
be offered.
(http://www.ncbi.nlm.nih.gov/books/NBK45
927/)
Causes of infertility
vi
20-30% of infertility cases are linked to physiological causes in men, 20-35% to physiological causes in women,
and 25-40% of cases are due to a joint problem. In 10-20% no cause is found.
vi
ART fact sheet June 2010 from the European Society for Human Reproduction and
Embryology (ESHRE).
http://www.eshre.eu/ESHRE/English/Guidelines-Legal/ART-fact-sheet/page.aspx/1061
2 1 %
1 4 %
6 %
3 %
2 4 %
2 %
6 %
2 8 %
1 1 %
C a u s e s o f in f e rtility
v i R e la tiv e fr e q u e n c y o f th e d if fe r e n t c a u s e s o f in fe r tility
T h e to ta l is g r e a te r th a n 1 0 0 % b e c a u s e s o m e c o u p le s h a v e m o r e th a n o n e c a u s e .
OvulatoryFailure
Tubal
Damag
e
Endometriosi
s
Mucus
defect/dysfunctio
n
Sperm
defects/dysfunctio
n
Othermale
infertility
Coital
failure
Unexplained
Other
s
3Its consequences
Most people affected by problems in conceiving find it difficult to deal with, both physically and
emotionally.
Infertility can lead to depression
Infertility is a medical condition which can cause
severe side effects such as depression. There is a
widespread mistaken belief that life continues as
before. The childlessness, the prolonged
uncertainty, and the monthly attempts to become
pregnant, sometimes over several years, can affect
every aspect of a person’s life, as well as
impacting on relationships with partners, family
members and friends.
Emotional troubles
If infertility is prolonged, studies have found that
people go through an extremely stressful and
emotional experience. Their sense of self, their
identity and the meaning and purpose of life are
challenged.
The experiences of couples who have had
infertility treatment in the United Kingdom: results
of a survey performed in 1997:
vii
Tearfulness 97%
Depression/isolation 94%
Anger 84%
Inadequacy 72%
Guilt/shame 62%
Suicidal feelings 20%
Societal troubles and isolation
As the years go by, this is a burden that many
people bear. People experience an impaired ability
to function normally in society for long periods of
time. For some, events such as the announcement
of pregnancies within close circles, children's
birthdays, and religious celebrations related to
nativity, Mother’s Day and other similar occasions
are extremely distressing, difficult to deal with and
are a painful reminder of their fertility problems.
Medical treatments that can help to resolve this
problem have been developed. However infertility
can still be a socially taboo subject.
People often have to face stereotypes, prejudices,
misunderstandings and guilty feelings. Thus some
people do not dare to address this issue with
friends and family. Little by little they become
socially isolated, even more so if children are
present in their network and neighbourhood.
Professional troubles
The impact of fertility problems on men and
women may also affect their professional life.
They need to take time out from their career for
investigations and treatment.
The role of patient associations
Patient associations contribute to the reduction of
anxiety levels by informing those affected of the
reproductive biology, the pathology and the
treatment options.
They emphasize the role of counseling and its
benefits as well as the importance of offering it at
an early stage.What society do we want?
Society is changing, and with it, the average age of conception with the largest number of
treatments being undergone by women aged between the ages of 30 and 39. Infertility is an
important and increasing issue for Europe. We can't ignore the impact of all the consequences
linked to infertility in our society.
“Having been through infertility myself and benefited directly from the support offered by
the patient association, I recognized how important that support is and got involved.”
Clare Lewis-Jones MBE, Chief Executive, Infertility Network UK &
Chair of Fertility Europe
They also offer support groups which provide an
additional forum for the explanation of many areas
of reproductive medicine and the impact of related
technology.
They can reduce the sense of isolation by allowing
people to meet others with similar problems.
vii
Kerr J. et al. (1999) The experiences of
couples who have had infertility treatment
in the United Kingdom : results of a
survey performed in 1997. Human Reprod.
Vol 14 : 934-938.
4Medically Assisted Reproduction
What are the different treatments?
Medically Assisted Reproduction (MAR)
treatments include fertilisation in vivo such as
simple hormonal treatments and insemination
(Intra-uterine Inseminaton - IUI), as well as in vitro
fertilisation (IVF) and intracytoplasmic sperm
injection (ICSI).
Some specifics about IVF
viii
IVF is a process by which an egg is fertilised by
sperm in vitro (“in glass”) i.e. outside the body.
IVF is a treatment for infertility when other
methods of assisted reproductive technology have
failed. IVF is performed by monitoring a woman’s
ovulatory process and collecting ovum or ova (egg
or eggs) from the woman’s ovaries and placing
them with sperm in a fluid medium in a petri dish
within a laboratory for hopeful fertilisation
resulting in an embryo/s. The embryos obtained
following this procedure are transferred back into
the uterus.
Additional techniques that are routinely used in
MAR include ovarian stimulation to retrieve
multiple eggs, ultrasound-guided transvaginal
oocyte retrieval directly from the ovaries, egg and
sperm preparation, as well as culture and selection
of resultant embryos before embryo transfer back
into the uterus.
MAR may also assist in the treatment of male
infertility e.g. abnormal sperm. In such cases, ICSI
may be used, where a sperm cell is injected
directly into the egg cell. ICSI is used when sperm
have difficulty penetrating the egg or when sperm
numbers are very low.
Gamete donation
MAR may also be offered for those who are not
able to use their own gametes (egg and/or sperm)
by using donated gametes.
viii
Wikipedia
http://en.wikipedia.org/wiki/In_vitro_fertilisation
5Ethics
Access to Medically Assisted Reproduction creates
a philosophical dilemma regarding the future of
the children born.
In order to raise the issue with public authorities,
the media and the general public, Fertility Europe
is actively contributing to the bioethical and
societal reflection.
Our objective is to bring different views and
perspectives to these debates bearing in mind our
tireless promotion of progressive policies, effective
practices and universal human rights i.e.
1. The right to found a family
and to procreate;
2. The wellbeing and welfare of
children to come;
3. Responsibilities of the future
parents towards the
community;
4. The right of deciding to become
parents through treatments or
not.
Denisa Priadková, Chair of Občianske združenie
BOCIAN & Fertility Europe Vice-Chair
“I see the need for regulations, best
practice exchange and ethics on
European level and identified huge
need for prevention and education.”
Examples of disparities across Europe
Reimbursement of In Vitro Fertilisation / ICSI across Europe in Public Centers and Number of cycles reimbursed across Europe, data provided
from the FE members associations, April 2012
Countries Laboratory Drugs Consultations Blood Ultra Sounds
Number of cycles
IUI
Number of cycles
IVF/ICSI
Czech Rep. 100% 100% 100% 100% 100% 6 4 or 3*
France 100% 100% 100% 100% 100% 6 4 to 5
Poland** 3
Portugal 100% 69% 100% 100% 100% 3 3
Romania***
Slovakia 75% 75% 100% 100% 100% 0 0 to 2 or 3
Sweden 100% 100% 100% 100% 100% 6 0 to 3
UK 0 or 100%**** 0 or 100% 0 or 100% 0 or 100% 0 or 100% 0 to 6 0 to 3
: No reimbursement
* Czech Rep.: 4 if the first 2 with Single Embryo Transfer (SET) or 3 without SET
** Poland: will provide from July 2013 on financing for 15,000 couples; both married and unmarried, for up to three in-vitro procedures for three years after
other fertility treatments fail.
*** Romania: Since 2011 a pilot fund from the Health Ministry partially funded the consultations and IVF procedures (no laboratory, no drugs, no blood reimbursed)
for 800 couples and partial reimbursement for one IVF cycle for a limited number of couple
**** UK: Dependent on the postcode
6 Equality of Access to Treatment
Why should there be equity of
access to treatments?
Ensure sustainable population growth
rates
Addressing reproductive care is a challenge that
European governments are tackling whilst
addressing the maintenance of balanced
populations with sustainable population growth
rates. However, infertility may be erroneously side
lined and is considered to be a low priority on the
public health care stage in many European
countries.
European Parliament’s resolution
ix
The European Parliament notes that infertility is
a medical condition which can cause severe side
effects such as depression. It points out that
infertility is on the increase occurring in
approximately 15 % of people, and therefore calls
on the Member States to ensure the rights of
those affected to universal access to infertility
treatment.
The right to found a family and to
procreate
x
A recent jurisprudence from the European Court
of Justice has stated that Article 8 of the
European Convention on Human Rights provides
a right to respect for one’s “private and family
life, home and his correspondence” and that it
could be applied in case of Medically Assisted
Reproduction (MAR) because of the special
importance of the right to found a family and to
procreate.
Diverse legislations across Europe
xi
19 Member States of the European Union have
specific legislations in place for MAR. In the
remaining 8 countries, MAR is covered by the
general health legislation. Israel, Switzerland,
Croatia and Norway have different legislation in
place.
Inequality of access to treatment
There is inequality of access to fertility treatment
right across Europe. Some countries provide well
– some do not. Inequalities consist of disparity in
the treatments which are permitted in some
countries, the eligibility criteria to treatment and
in reimbursement policies. In some countries, the
right of access to fertility treatment does not
necessarily mean that there is also a right to
public funding of that treatment.
Treatment reimbursement
Fertility treatment is fully reimbursed in some
countries but the number of cycles being funded
varies. In others, it is only partially reimbursed
with only treatments up to, but not including,
MAR such as In Vitro Fertilisation (IVF), being
reimbursed forcing those whose only chance of
conceiving using such treatment into the private
sector or outside their own country.
Quality in MAR
As with every medical treatment, MAR has to be a
treatment of quality requiring four dimensions
from the patient's perspective.
1 Safety
A safe treatment avoids the most common risks
encountered with MAR such as Ovarian
Hyperstimulation Syndrome (OHSS) or multiples
pregnancies. These consequences can highly
impact both on the mother and/or children's
health.
2 Effectiveness
The success rates (pregnancy rate, delivery rate...)
of the different MAR treatments are important to
patients who need transparent information on
the procedures they will undergo in order to
make informed decisions.
3 Patient centred
Treatment should be patient centered and not
technology centered: communication between
patients and clinics, counseling, emotional
support, patient involvement, privacy and
competence of clinics and staff are elements
facilitating the wellbeing of the patient.
4 Access
Inequalities consist of the variation of eligibility
criteria being employed to access treatment, the
types of treatments permitted and the disparity in
reimbursement.
ix
Resolution on the demographic
future of Europe from the European
Parliament (2008).
http://www.europarl.europa.eu/sides/getDoc.do?
pubRef=-//EP//NONSGML+COMPARL+PE-
392.248+01+DOC+PDF+V0//EN&language=EN
x
European Court of Justice: Case of
S.H. and others v. Austria judgment 1 April
2010.
http://cmiskp.echr.coe.int/tkp197/viewhbkm.asp?
sessionId=81266049&skin=hudoc-
en&action=html&table=F69A27FD8FB86142BF01C
1166DEA398649&key=93863&highlight=
xi
Comparative Analysis of Medically
Assisted Reproduction in the EU:
Regulation and Technologies European
Society for Human Reproduction and
Embryology (ESHRE).
http://www.eshre.eu/binarydata.aspx?
type=doc&sessionId=q1m1djzhvbgxisyxggghuo55/
MAR_for_web[2].pdf
xi 20-30% of infertility cases are
linked to physiological causes in men, 20-
35% to physiological causes in women,
and 25-40% of cases are due to a joint
problem. In 10-20% no cause is found.
Report from the University of Bristol,
Department of Obstetrics & Gynaecology
by Professor Michael Hull: brief summary
taken from an extensive review published
in Human Reproduction in 1992.
xii
Law evasion and unequal access
to treatment leads to cross-border
reproductive care: Shenfield et al. (in
press, 2009) Shenfield, F., de Mouzon, J.,
Pennings, G., Ferraretti, A.P.F., Andersen,
A.N., de Wert, G., Goossens, V. And Van
den Eede, B., on behalf of the ESHRE
Taskforce on cross border reproductive
care 2009.
7 Criteria to ensure Equity of Access to Treatment
Access to Medically Assisted Reproduction (MAR)
treatments should be governed by the same
principles as other health services, namely needs
assessment, clinical effectiveness and cost
effectiveness.
It is inequitable for fertility patients to be subject to
wider access criteria - arising perhaps from social
value judgement - which cannot be fully justified. In
general, the main eligibility criteria for access to
MAR treatments are the age of the female, the
couples’ marital status (married or legally living
together), and the existence of previous children
from the current or a previous relationship.
Health needs assessment
Health needs assessment is a systematic and equal
method for reviewing the health issues faced by a
population, leading to agreed priorities and
resource allocation that will improve health and
reduce inequalities.
Clinical effectiveness
Disparities in MAR process
Clinical effectiveness is the ability of a procedure
or treatment to achieve the desired result.
Specifically, how well a particular test or treatment
works when used in the 'real world', rather than in
carefully controlled clinical trials. Clinical
effectiveness is not the same as efficacy.
Cost effectiveness
Cost effectiveness is a type of economic evaluation
used to determine the best use of money
available for medical care (Value for money). A
test or treatment is said to be 'cost-effective' if it
leads to a better result than would otherwise be
achieved by using the resources in other ways.
8 Protection, Prevention and Education
This subject is about three issues gathered
together as one, promoting protection and
prevention to Europe’s politicians and political
institutions and educating the public about the
causes of infertility.
Indeed the importance of the protection of fertility
and the prevention of infertility has not been of
great enough significance to governments, health
agencies and social organisations dealing with
fertility.
European governments need to be more active in
promoting public protection of fertility and
prevention of infertility. Infertility needs to be
considered a medical condition as much in need of
support as other chronic conditions which attract
funding and for which there are prevention
campaigns.
In fact preventive measures can start before
conception, maybe even before people realize they
wish to have children. But preventive thinking
might also be important for couples who intend to
have children much later in life.
Lifestyle choices can impact on future fertility. If
people are aware of this they may consider
lifestyle changes which could help their fertility in
the future.
How to protect fertility and
prevent infertility
One method of prevention should include
information on the types of fertility disorders, the
possibilities of detection, chances and risks of
treatments, their psychosocial and ethical context.
This knowledge is essential for informed decision-
making and to overcome the dilemma such
decisions may cause.
Governments which promote and support birth
control should equally inform the public of the risk
to their fertility from delaying having a child.
Governments should also work towards family
friendly environments, to make sure delaying
parenthood is not the only answer for men and
women who have not found a balanced
professional, social or economic situation.
Infertility is equally shared by
both genders
The general public need to know that infertility is
not solely a woman’s problem and that 45-70 % of
cases are caused by either male factors or joint
factorsxii
. As such infertility is a problem shared by
both partners and therefore both genders.
Education on the causes of infertility must include
information for men on reproductive health and
what can impact on their fertility. To do this
effectively, fertility must be separated out from
virility to show it has nothing to do with
masculinity.
The best place to start educating people on what
impacts on their fertility and the causes of
infertility is with teenagers and young adults, as
they are the potential parents of the future, and
infertility will be a major concern for a large
proportion of them without that education. Any
education curriculum about reproduction must
include a component on infertility to ensure
informed decision-making.
xii
Infertility Network UK's educational leaflet on
Lifestyles impacting on future fertility
Sexually transmitted
infections
The prevention of sexually transmitted
infection is vital for health in general; it is
important that the public is aware that this
is a minority cause of infertility and can be
linked to less than 10 % of causes.
However, in countries which do not provide
sexual education the amount of infertility
cases caused by sexually transmitted
diseases seems to be higher than in
countries which apply such programs.
Delaying parenthood
Little is done to advise young adults about
the effect of delaying parenthood which is a
major cause of fertility problems. Fertility in
women drops dramatically from their mid
30’s and to a lesser extent in men.
In addition, the intervening years exposes
them and their partners to longer periods of
risk such as (i) Changes in egg quality and
number; (ii) Changes in quality of sperm; (iii)
Potential to make a normal embryo may be
les; (iv) Fibroids and early pregnancy losses
which could also have a detrimental effect
on their fertility.
Smoking
Smoking is known to be detrimental to
fertility. Women who smoke are twice
as likely to have fertility problems as
those who don’t and also often have a
shorter reproductive life as they tend to
have an earlier menopause.
Excess or binge drinking
Excess or binge drinking can make it
harder to conceive for both men and
women, affecting sperm and egg
production.
Recreational drugs
Recreational drugs, even those which
you may think are not particularly
harmful such as cannabis, may have an
impact on both male and female fertility.
Weight
Weight problems can affect your fertility if
you are very overweight or underweight.
Obesity is linked to ovulation problems for
women and with lower sperm counts for
men. Women who are very underweight is
not good for their fertility either; They need
some body fat in order to produce eggs
normally.
Anabolic steroids
Anabolic steroids, which men
sometimes take to improve their
performance in sports and boost
muscle, may lead to serious fertility
problems. They can cause the testicles
to shut down completely, and the
effects are not always reversible.
Eating disorders
Eating disorders can lead to fertility
problems. Women who are anorexic
often find that their periods stop, and
this can have a lasting impact even if a
woman is able to maintain a normal
weight in the future. Bulimia is linked
with polycystic ovary syndrome, a
condition which affects the way
women’s ovaries work.
9Towards a European Pact to address Reproductive
Health: Recommendations by Fertility Europe
One in six people across Europe experience some form of fertility problem at least once during their
reproductive life span, meaning that a potential 25 million EU citizens are estimated to be having difficulties in
conceiving. Infertility is recognized as a disease by both world and regional agencies such as the World Health
Organization. Over the last 35 years medically assisted reproduction techniques have been developed from
simple hormone treatments and artificial insemination up to and including in vitro fertilisation (IVF). Over 5
million people have been born worldwide thanks to IVF.
Ethics
People have the basic right to decide
on the number of children they have,
and when they have them. The
responsibility of couples and individuals in the
exercise of this right should take into account
the needs of their living and future children, as
well as their responsibilities towards the
community.
1
There are different ways of resolving
involuntary childlessness, a full range of
Medically Assisted Reproduction (MAR)
treatments, as well as adoption. Those
affected should also have the option of
deciding against these treatments and
alternatives and decide to live a life without
children. Both options can bring a happy and
fulfilled life.
2
There are known risks in pregnancy in
relation to age and therefore more
information and national community
debate is required before decisions about
assisting not only older women but also older
men i.e. women and men past the natural age
of conceiving to become parents.
3
Donation of gametes on commercial basis
is ethically unacceptable.4
Access to Care
Infertility is a medical condition and a
health need which should be covered
as such by national social insurance
systems.
5
The inclusion of a full range of Medically
Assisted Reproduction (MAR)
treatments in the provision of basic
health care at least partially depends on the
general level of welfare in society.
6
Fertility investigations and treatment
should be reimbursed across Europe,
and treatments of proven benefit to
patients should be made available,
irrespective of the patient's income and place
of residence.
7
To avoid unjustified discrimination the
principles of needs assessment, cost
effectiveness and clinical effectiveness
should be used to determine the level of
8
reimbursement for all assisted reproduction
possibilities.
Safe and Quality
Treatments
People with difficulties in conceiving
should be given accurate information in
a range of formats and languages on all
assisted reproduction possibilities, as well as
adoption and a life without child, as well as
being allowed to accept or to reject the
diagnosis or treatment without discrimination.
9
Those undergoing MAR as well as
those donating gametes should
sign an informed consent
document ensuring that the risks and benefits
of treatment are described in a balanced,
evidence-based framework, and that
appropriate warnings are given when
evidence is inadequate to assess the efficacy
or safety of specific drugs, devices or
procedures.
10
Access to psychological
counseling should be offered in
the framework of fertility11
investigations and treatments. People should
be offered implications counseling,
particularly if their treatment includes the use
of donated gametes and embryos. They
should be informed about any potential long
term risks and psychological, social and
medical ramifications.
Prevention and Education
Public prevention of infertility has
been inadequate to date and
governments have a responsibility
to promote unbiased rational information
about all causes, implications and treatments
options to help remove the myths and
misunderstandings.
12
Male infertility needs to be
highlighted as contributing to half
of the causes. Infertility can no
longer be considered a “woman’s” problem.
13
Education of the next generation
about infertility and its
implications needs to start now.14
Patients associations across
Europe should be recognized as a
driving force behind multi-
stakeholders prevention campaigns to make
education programmes happen.
15
xiii
Glossary
Assisted Reproduction Technology (ART): all treatments that include in vitro handling of human
gametes (eggs and sperm) and embryos to establish a pregnancy – often called MAR (Medically
Assisted Reproduction)
Delivery rate: number of deliveries per 100 cycles (aspiration or embryo transfer cycles)
Embryo: the product up to eight weeks after fertilisation, later it is called a fetus
Embryo donation: transfer of an embryo that did not originate from the recipient and her partner
Endometriosis: condition where endometrial tissue grows in areas other than the uterine cavity
Fertilisation: a sperm penetrates the egg leading to a combination of genetic material resulting in a
fertilised egg
Gamete: a reproductive cell, egg in females and sperm in males
Infertility: a disease of the reproductive system defined by the failure to conceive after 12 months of
regular unprotected sexual intercourse
Intracytoplasmic sperm injection (ICSI): process by which an egg is fertilised by injecting a single
sperm into the egg
Intrauterine Insemination (IUI): the insemination of washed semen directly into the uterus
In vitro fertilisation (IVF): fertilisation of an egg by sperm in a laboratory dish
21 Fertility Matters - May 2013
References
22 Fertility Matters - May 2013
xiii
ESHRE Assisted Reproduction Technology (ART) Glossary
http://www.eshre.eu/ESHRE/English/Guidelines-Legal/ART-glossary/page.aspx/1062

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Fertility matters

  • 1. Fertility Matters Europe For one in six fertility is an issue
  • 2. Fertility Matters What is at stake across Europe regarding Fertility for the years to come 1 Who we are .........................................................................................................................2 2. Key facts on Fertility...............................................................................................................4 ART fact sheet June 2010 from the European Society for Human Reproduction and Embryology (ESHRE)................................................................................................................5 ART fact sheet June 2010 from the European Society for Human Reproduction and Embryology (ESHRE)................................................................................................................6 3 Its consequences.......................................................................................................................7 4 Medically Assisted Reproduction ...........................................................................................9 5 Ethics .....................................................................................................................................11 6 Equality of Access to Treatment............................................................................................12 7 Criteria to ensure Equity of Access to Treatment..................................................................14 8 Protection, Prevention and Education....................................................................................16 9 Towards a European Pact to address Reproductive Health: Recommendations by Fertility Europe.......................................................................................................................................19 Glossary....................................................................................................................................21 References.................................................................................................................................22 Correspondence address: office@fertilityeurope.eu Fertility Europe VZW Cyriel Buyssestraat 2 9820 Merelbeke Belgium 1 Who we are Fertility Europe history and values In 2008, a small group of European associations involved with fertility issues felt the need to establish a uniting European umbrella organisation, based on democracy, transparency
  • 3. and being a truly representative body and voice of those concerned with fertility problems, in discussions with the policymakers and the media. A European representative association Today Fertility Europe is the largest and most representative association of European organisations involved with fertility issues with members from over 20 European countries. In our national organisations we are all involved on a daily basis with assisting those affected by difficulties in conceiving. Our goals The fact that so many people across Europe need reliable information on fertility, its protection and improvement, and on infertility, its treatment and options has led us to work together and we share four main goals: - To improve the rights of those affected by difficulties in conceiving; - To build a strong cross border network amongst European patients and health professionals in order to achieve the sharing of best practise; - To promote societal changes regarding the perception of infertility; - To promote education in the area of the protection of reproductive health and a pro- active approach to family planning. Special Families Campaign All over Europe, people are struggling to conceive and Fertility Europe has the deepest respect for those in this position. However, although difficult for some, they can and do move on, and often create a special family on their own. In 2011, Fertility Europe started the Special Families campaign. We have asked those people who have had to go the extra mile to become a family, to share their story through www.fertilityeurope.eu The idea is to send a Postcard of Hope, whether you are a family with children after treatment, adopted, naturally conceived after years of trying, still waiting for your dream to come true, a family of two or other “special” family. Within a few months we received hundreds of stories with photographs and strong personal messages.
  • 4. Fertility Europe members Belgium De Verdwaalde Ooievaar Netwerk Fertiliteit http:// deverdwaaldeooievaar.be/ Bulgaria Iskambebe www.iskambebe.bg Sdruzhenie Zachatie www.zachatie.org/ Croatia Association RODA www.roda.hr Czech Republic ADAM http://www.adamcr.cz/ Denmark Landsforeningen for ufrivilligt barnlose www.lfub.dk Finland Lapsettomien yhdistys Simpukka ry http://www.simpukka.info/ France Maia http://www.maia-asso.org/ Greece Kiveli www.kiveli.gr/ Magna Mater http://www.magnamater.gr/ Hungary Országos Lombikbébi Támogató Alapitvány http://www.lombikbebialapitvany.hu/ Iceland Tilvera www.tilvera.is Israel CHEN - Patient Fertility Association http://www.amotatchen.org/ Italy Amica Cicogna www.amicacicogna.it/ The Netherlands Freya - Vereniging voor vruchtbaarheidsproblemen http://www.freya.nl/ Norway ØNSKEBARN http://www.onskebarn.no/ Poland Nasz Bocian http://www.nasz-bocian.pl/ Portugal APFertilidade - Associação Portuguesa de (Fertilidade www.apfertilidade.org Romania SOS Infertilitatea www.infertilitate.com Slovak Republic Občianske združenie BOCIAN http://www.bocianoviny.sk/ Sweden Barnlängtan www.barnlangtan.com/ Switzerland Verein Kinderwunsch http://www.kinderwunsch.ch/ United Kingdom Infertility Network UK http://www.infertilitynetworkuk.com/ 2.Key facts on Fertility Fertility Europe represents 25 million people who have difficulties in conceiving across Europe through 23 patient associations and interest groups in 22 countries
  • 5. 0 1 0 0 0 0 0 2 0 0 0 0 0 3 0 0 0 0 0 4 0 0 0 0 0 5 0 0 0 0 0 1 9 9 6 1 9 9 7 1 9 9 8 1 9 9 9 2 0 0 0 2 0 0 1 2 0 0 2 2 0 0 3 2 0 0 4 2 0 0 5 N u m b e r o f M e d ic a lly A s s is te d R e p ro d u c t io n C y c le s in E u ro p e 1 9 9 6 - 2 0 0 5 The first successful birth of a "test tube baby", Louise Brown, occurred in 1978. Since that time over five million individuals have been born worldwide following in vitro fertilisation. Professor Robert G. Edwards, the physiologist who developed the treatment, was awarded the Nobel Prize in Physiology or Medicine in 2010. For 1 on 6 Fertility is an issue i One in six people worldwide experience some form of fertility problem at least once during their reproductive lifespan meaning that a potential ii 25 million EU citizens are estimated to be having difficulties in conceiving. Europe performs the most cycles of MAR worldwide... iii Europe leads the world in the number of cycles taking place, initiating approximately 54% of all reported Medically Assisted Reproduction (MAR) treatment cycles. ... and faces a constant increase In 2005 the number of MAR treatment cycles in the EU exceeded 400,000 compared to approximately 200,000 cycles ten years earlier so an increase of 100% (see figure 1) iv Infertility is a medical condition Infertility is recognized by the World Health Organization as a disease and, without investigations and treatment, this medical condition prevents people of reproductive age from fulfilling the life goal of becoming a parent. v People should be referred for investigations if they not have conceived while having regular unprotected sexual intercourse after 1 year and up to 2 years. However if there is something in their medical history which indicates a fertility problem e.g. amenorrhoea, or where the female is aged 36 or over (given the impact of the age of the female on the success of treatment), investigations and possible treatment should be considered sooner. This includes those diagnosed with secondary infertility. Secondary infertility is defined as infertility in a couple who already had at least one pregnancy. This can be a pregnancy resulting in the birth of a baby or a pregnancy that has miscarried, resulted in an ectopic pregnancy or led to a decision to terminate the pregnancy for medical reasons. i ART fact sheet June 2010 from the European Society for Human Reproduction and Embryology (ESHRE). http://www.eshre.eu/ESHRE/English/Guidelines- Legal/ART-fact-sheet/page.aspx/1061 ii According to Eurostats 2008: 48,7 % of the 497,4 millions EU citizens are between 14 and 49 years old : 14-25 y. old (12,5 % ); 25-49 y. old (36,2%) = 242 millions 1/6 of 242 millions = 40,3 millions. A potential of 25 millions EU citizens are estimated to be have difficulties in conceiving. iii Comparative Analysis of Medically Assisted Reproduction in the EU:
  • 6. Regulation and Technologies European Society for Human Reproduction and Embryology (ESHRE). http://www.eshre.eu/binarydata.aspx? type=doc&sessionId=q1m1djzhvbgxisyxggghuo55/ MAR_for_web[2].pdf iv ART in Europe, Publications from 1997 to 2006, ESHRE http://www.eshre.eu/page.aspx/1758 v People who have not conceived after 1 year of regular unprotected sexual intercourse should be offered further clinical investigation including semen analysis and/or assessment of ovulation. (...) Where there is a history of predisposing factors (such as amenorrhoea, oligomenorrhoea, pelvic inflammatory disease or undescended testes), or where a woman is aged 35 years or over, earlier investigation should be offered. (http://www.ncbi.nlm.nih.gov/books/NBK45 927/) Causes of infertility vi 20-30% of infertility cases are linked to physiological causes in men, 20-35% to physiological causes in women, and 25-40% of cases are due to a joint problem. In 10-20% no cause is found. vi ART fact sheet June 2010 from the European Society for Human Reproduction and Embryology (ESHRE). http://www.eshre.eu/ESHRE/English/Guidelines-Legal/ART-fact-sheet/page.aspx/1061
  • 7. 2 1 % 1 4 % 6 % 3 % 2 4 % 2 % 6 % 2 8 % 1 1 % C a u s e s o f in f e rtility v i R e la tiv e fr e q u e n c y o f th e d if fe r e n t c a u s e s o f in fe r tility T h e to ta l is g r e a te r th a n 1 0 0 % b e c a u s e s o m e c o u p le s h a v e m o r e th a n o n e c a u s e . OvulatoryFailure Tubal Damag e Endometriosi s Mucus defect/dysfunctio n Sperm defects/dysfunctio n Othermale infertility Coital failure Unexplained Other s 3Its consequences
  • 8. Most people affected by problems in conceiving find it difficult to deal with, both physically and emotionally. Infertility can lead to depression Infertility is a medical condition which can cause severe side effects such as depression. There is a widespread mistaken belief that life continues as before. The childlessness, the prolonged uncertainty, and the monthly attempts to become pregnant, sometimes over several years, can affect every aspect of a person’s life, as well as impacting on relationships with partners, family members and friends. Emotional troubles If infertility is prolonged, studies have found that people go through an extremely stressful and emotional experience. Their sense of self, their identity and the meaning and purpose of life are challenged. The experiences of couples who have had infertility treatment in the United Kingdom: results of a survey performed in 1997: vii Tearfulness 97% Depression/isolation 94% Anger 84% Inadequacy 72% Guilt/shame 62% Suicidal feelings 20% Societal troubles and isolation As the years go by, this is a burden that many people bear. People experience an impaired ability to function normally in society for long periods of time. For some, events such as the announcement of pregnancies within close circles, children's birthdays, and religious celebrations related to nativity, Mother’s Day and other similar occasions are extremely distressing, difficult to deal with and are a painful reminder of their fertility problems. Medical treatments that can help to resolve this problem have been developed. However infertility can still be a socially taboo subject. People often have to face stereotypes, prejudices, misunderstandings and guilty feelings. Thus some people do not dare to address this issue with friends and family. Little by little they become socially isolated, even more so if children are present in their network and neighbourhood. Professional troubles The impact of fertility problems on men and women may also affect their professional life. They need to take time out from their career for investigations and treatment. The role of patient associations Patient associations contribute to the reduction of anxiety levels by informing those affected of the reproductive biology, the pathology and the treatment options. They emphasize the role of counseling and its benefits as well as the importance of offering it at an early stage.What society do we want? Society is changing, and with it, the average age of conception with the largest number of treatments being undergone by women aged between the ages of 30 and 39. Infertility is an important and increasing issue for Europe. We can't ignore the impact of all the consequences linked to infertility in our society. “Having been through infertility myself and benefited directly from the support offered by the patient association, I recognized how important that support is and got involved.” Clare Lewis-Jones MBE, Chief Executive, Infertility Network UK & Chair of Fertility Europe
  • 9. They also offer support groups which provide an additional forum for the explanation of many areas of reproductive medicine and the impact of related technology. They can reduce the sense of isolation by allowing people to meet others with similar problems. vii Kerr J. et al. (1999) The experiences of couples who have had infertility treatment in the United Kingdom : results of a survey performed in 1997. Human Reprod. Vol 14 : 934-938. 4Medically Assisted Reproduction
  • 10. What are the different treatments? Medically Assisted Reproduction (MAR) treatments include fertilisation in vivo such as simple hormonal treatments and insemination (Intra-uterine Inseminaton - IUI), as well as in vitro fertilisation (IVF) and intracytoplasmic sperm injection (ICSI). Some specifics about IVF viii IVF is a process by which an egg is fertilised by sperm in vitro (“in glass”) i.e. outside the body. IVF is a treatment for infertility when other methods of assisted reproductive technology have failed. IVF is performed by monitoring a woman’s ovulatory process and collecting ovum or ova (egg or eggs) from the woman’s ovaries and placing them with sperm in a fluid medium in a petri dish within a laboratory for hopeful fertilisation resulting in an embryo/s. The embryos obtained following this procedure are transferred back into the uterus. Additional techniques that are routinely used in MAR include ovarian stimulation to retrieve multiple eggs, ultrasound-guided transvaginal oocyte retrieval directly from the ovaries, egg and sperm preparation, as well as culture and selection of resultant embryos before embryo transfer back into the uterus. MAR may also assist in the treatment of male infertility e.g. abnormal sperm. In such cases, ICSI may be used, where a sperm cell is injected directly into the egg cell. ICSI is used when sperm have difficulty penetrating the egg or when sperm numbers are very low. Gamete donation MAR may also be offered for those who are not able to use their own gametes (egg and/or sperm) by using donated gametes. viii Wikipedia http://en.wikipedia.org/wiki/In_vitro_fertilisation
  • 11. 5Ethics Access to Medically Assisted Reproduction creates a philosophical dilemma regarding the future of the children born. In order to raise the issue with public authorities, the media and the general public, Fertility Europe is actively contributing to the bioethical and societal reflection. Our objective is to bring different views and perspectives to these debates bearing in mind our tireless promotion of progressive policies, effective practices and universal human rights i.e. 1. The right to found a family and to procreate; 2. The wellbeing and welfare of children to come; 3. Responsibilities of the future parents towards the community; 4. The right of deciding to become parents through treatments or not. Denisa Priadková, Chair of Občianske združenie BOCIAN & Fertility Europe Vice-Chair “I see the need for regulations, best practice exchange and ethics on European level and identified huge need for prevention and education.”
  • 12. Examples of disparities across Europe Reimbursement of In Vitro Fertilisation / ICSI across Europe in Public Centers and Number of cycles reimbursed across Europe, data provided from the FE members associations, April 2012 Countries Laboratory Drugs Consultations Blood Ultra Sounds Number of cycles IUI Number of cycles IVF/ICSI Czech Rep. 100% 100% 100% 100% 100% 6 4 or 3* France 100% 100% 100% 100% 100% 6 4 to 5 Poland** 3 Portugal 100% 69% 100% 100% 100% 3 3 Romania*** Slovakia 75% 75% 100% 100% 100% 0 0 to 2 or 3 Sweden 100% 100% 100% 100% 100% 6 0 to 3 UK 0 or 100%**** 0 or 100% 0 or 100% 0 or 100% 0 or 100% 0 to 6 0 to 3 : No reimbursement * Czech Rep.: 4 if the first 2 with Single Embryo Transfer (SET) or 3 without SET ** Poland: will provide from July 2013 on financing for 15,000 couples; both married and unmarried, for up to three in-vitro procedures for three years after other fertility treatments fail. *** Romania: Since 2011 a pilot fund from the Health Ministry partially funded the consultations and IVF procedures (no laboratory, no drugs, no blood reimbursed) for 800 couples and partial reimbursement for one IVF cycle for a limited number of couple **** UK: Dependent on the postcode 6 Equality of Access to Treatment Why should there be equity of access to treatments? Ensure sustainable population growth rates Addressing reproductive care is a challenge that European governments are tackling whilst addressing the maintenance of balanced populations with sustainable population growth rates. However, infertility may be erroneously side lined and is considered to be a low priority on the public health care stage in many European countries. European Parliament’s resolution ix The European Parliament notes that infertility is a medical condition which can cause severe side effects such as depression. It points out that infertility is on the increase occurring in approximately 15 % of people, and therefore calls on the Member States to ensure the rights of those affected to universal access to infertility treatment. The right to found a family and to procreate x A recent jurisprudence from the European Court of Justice has stated that Article 8 of the European Convention on Human Rights provides a right to respect for one’s “private and family life, home and his correspondence” and that it could be applied in case of Medically Assisted Reproduction (MAR) because of the special importance of the right to found a family and to procreate. Diverse legislations across Europe xi 19 Member States of the European Union have specific legislations in place for MAR. In the remaining 8 countries, MAR is covered by the general health legislation. Israel, Switzerland, Croatia and Norway have different legislation in place.
  • 13. Inequality of access to treatment There is inequality of access to fertility treatment right across Europe. Some countries provide well – some do not. Inequalities consist of disparity in the treatments which are permitted in some countries, the eligibility criteria to treatment and in reimbursement policies. In some countries, the right of access to fertility treatment does not necessarily mean that there is also a right to public funding of that treatment. Treatment reimbursement Fertility treatment is fully reimbursed in some countries but the number of cycles being funded varies. In others, it is only partially reimbursed with only treatments up to, but not including, MAR such as In Vitro Fertilisation (IVF), being reimbursed forcing those whose only chance of conceiving using such treatment into the private sector or outside their own country. Quality in MAR As with every medical treatment, MAR has to be a treatment of quality requiring four dimensions from the patient's perspective. 1 Safety A safe treatment avoids the most common risks encountered with MAR such as Ovarian Hyperstimulation Syndrome (OHSS) or multiples pregnancies. These consequences can highly impact both on the mother and/or children's health. 2 Effectiveness The success rates (pregnancy rate, delivery rate...) of the different MAR treatments are important to patients who need transparent information on the procedures they will undergo in order to make informed decisions. 3 Patient centred Treatment should be patient centered and not technology centered: communication between patients and clinics, counseling, emotional support, patient involvement, privacy and competence of clinics and staff are elements facilitating the wellbeing of the patient. 4 Access Inequalities consist of the variation of eligibility criteria being employed to access treatment, the types of treatments permitted and the disparity in reimbursement. ix Resolution on the demographic future of Europe from the European Parliament (2008). http://www.europarl.europa.eu/sides/getDoc.do? pubRef=-//EP//NONSGML+COMPARL+PE- 392.248+01+DOC+PDF+V0//EN&language=EN x European Court of Justice: Case of S.H. and others v. Austria judgment 1 April 2010. http://cmiskp.echr.coe.int/tkp197/viewhbkm.asp? sessionId=81266049&skin=hudoc- en&action=html&table=F69A27FD8FB86142BF01C 1166DEA398649&key=93863&highlight= xi Comparative Analysis of Medically Assisted Reproduction in the EU: Regulation and Technologies European Society for Human Reproduction and Embryology (ESHRE). http://www.eshre.eu/binarydata.aspx? type=doc&sessionId=q1m1djzhvbgxisyxggghuo55/ MAR_for_web[2].pdf xi 20-30% of infertility cases are linked to physiological causes in men, 20-
  • 14. 35% to physiological causes in women, and 25-40% of cases are due to a joint problem. In 10-20% no cause is found. Report from the University of Bristol, Department of Obstetrics & Gynaecology by Professor Michael Hull: brief summary taken from an extensive review published in Human Reproduction in 1992. xii Law evasion and unequal access to treatment leads to cross-border reproductive care: Shenfield et al. (in press, 2009) Shenfield, F., de Mouzon, J., Pennings, G., Ferraretti, A.P.F., Andersen, A.N., de Wert, G., Goossens, V. And Van den Eede, B., on behalf of the ESHRE Taskforce on cross border reproductive care 2009. 7 Criteria to ensure Equity of Access to Treatment Access to Medically Assisted Reproduction (MAR) treatments should be governed by the same principles as other health services, namely needs assessment, clinical effectiveness and cost effectiveness. It is inequitable for fertility patients to be subject to wider access criteria - arising perhaps from social value judgement - which cannot be fully justified. In general, the main eligibility criteria for access to MAR treatments are the age of the female, the couples’ marital status (married or legally living together), and the existence of previous children from the current or a previous relationship. Health needs assessment Health needs assessment is a systematic and equal method for reviewing the health issues faced by a population, leading to agreed priorities and resource allocation that will improve health and reduce inequalities. Clinical effectiveness Disparities in MAR process
  • 15. Clinical effectiveness is the ability of a procedure or treatment to achieve the desired result. Specifically, how well a particular test or treatment works when used in the 'real world', rather than in carefully controlled clinical trials. Clinical effectiveness is not the same as efficacy. Cost effectiveness Cost effectiveness is a type of economic evaluation used to determine the best use of money available for medical care (Value for money). A test or treatment is said to be 'cost-effective' if it leads to a better result than would otherwise be achieved by using the resources in other ways.
  • 16. 8 Protection, Prevention and Education
  • 17. This subject is about three issues gathered together as one, promoting protection and prevention to Europe’s politicians and political institutions and educating the public about the causes of infertility. Indeed the importance of the protection of fertility and the prevention of infertility has not been of great enough significance to governments, health agencies and social organisations dealing with fertility. European governments need to be more active in promoting public protection of fertility and prevention of infertility. Infertility needs to be considered a medical condition as much in need of support as other chronic conditions which attract funding and for which there are prevention campaigns. In fact preventive measures can start before conception, maybe even before people realize they wish to have children. But preventive thinking might also be important for couples who intend to have children much later in life. Lifestyle choices can impact on future fertility. If people are aware of this they may consider lifestyle changes which could help their fertility in the future. How to protect fertility and prevent infertility One method of prevention should include information on the types of fertility disorders, the possibilities of detection, chances and risks of treatments, their psychosocial and ethical context. This knowledge is essential for informed decision- making and to overcome the dilemma such decisions may cause. Governments which promote and support birth control should equally inform the public of the risk to their fertility from delaying having a child. Governments should also work towards family friendly environments, to make sure delaying parenthood is not the only answer for men and women who have not found a balanced professional, social or economic situation. Infertility is equally shared by both genders The general public need to know that infertility is not solely a woman’s problem and that 45-70 % of cases are caused by either male factors or joint factorsxii . As such infertility is a problem shared by both partners and therefore both genders. Education on the causes of infertility must include information for men on reproductive health and what can impact on their fertility. To do this effectively, fertility must be separated out from virility to show it has nothing to do with masculinity. The best place to start educating people on what impacts on their fertility and the causes of infertility is with teenagers and young adults, as they are the potential parents of the future, and infertility will be a major concern for a large proportion of them without that education. Any education curriculum about reproduction must include a component on infertility to ensure informed decision-making. xii Infertility Network UK's educational leaflet on Lifestyles impacting on future fertility
  • 18. Sexually transmitted infections The prevention of sexually transmitted infection is vital for health in general; it is important that the public is aware that this is a minority cause of infertility and can be linked to less than 10 % of causes. However, in countries which do not provide sexual education the amount of infertility cases caused by sexually transmitted diseases seems to be higher than in countries which apply such programs. Delaying parenthood Little is done to advise young adults about the effect of delaying parenthood which is a major cause of fertility problems. Fertility in women drops dramatically from their mid 30’s and to a lesser extent in men. In addition, the intervening years exposes them and their partners to longer periods of risk such as (i) Changes in egg quality and number; (ii) Changes in quality of sperm; (iii) Potential to make a normal embryo may be les; (iv) Fibroids and early pregnancy losses which could also have a detrimental effect on their fertility. Smoking Smoking is known to be detrimental to fertility. Women who smoke are twice as likely to have fertility problems as those who don’t and also often have a shorter reproductive life as they tend to have an earlier menopause. Excess or binge drinking Excess or binge drinking can make it harder to conceive for both men and women, affecting sperm and egg production. Recreational drugs Recreational drugs, even those which you may think are not particularly harmful such as cannabis, may have an impact on both male and female fertility. Weight Weight problems can affect your fertility if you are very overweight or underweight. Obesity is linked to ovulation problems for women and with lower sperm counts for men. Women who are very underweight is not good for their fertility either; They need some body fat in order to produce eggs normally. Anabolic steroids Anabolic steroids, which men sometimes take to improve their performance in sports and boost muscle, may lead to serious fertility problems. They can cause the testicles to shut down completely, and the effects are not always reversible. Eating disorders Eating disorders can lead to fertility problems. Women who are anorexic often find that their periods stop, and this can have a lasting impact even if a woman is able to maintain a normal weight in the future. Bulimia is linked with polycystic ovary syndrome, a condition which affects the way women’s ovaries work.
  • 19. 9Towards a European Pact to address Reproductive Health: Recommendations by Fertility Europe One in six people across Europe experience some form of fertility problem at least once during their reproductive life span, meaning that a potential 25 million EU citizens are estimated to be having difficulties in conceiving. Infertility is recognized as a disease by both world and regional agencies such as the World Health Organization. Over the last 35 years medically assisted reproduction techniques have been developed from simple hormone treatments and artificial insemination up to and including in vitro fertilisation (IVF). Over 5 million people have been born worldwide thanks to IVF. Ethics People have the basic right to decide on the number of children they have, and when they have them. The responsibility of couples and individuals in the exercise of this right should take into account the needs of their living and future children, as well as their responsibilities towards the community. 1 There are different ways of resolving involuntary childlessness, a full range of Medically Assisted Reproduction (MAR) treatments, as well as adoption. Those affected should also have the option of deciding against these treatments and alternatives and decide to live a life without children. Both options can bring a happy and fulfilled life. 2 There are known risks in pregnancy in relation to age and therefore more information and national community debate is required before decisions about assisting not only older women but also older men i.e. women and men past the natural age of conceiving to become parents. 3 Donation of gametes on commercial basis is ethically unacceptable.4 Access to Care Infertility is a medical condition and a health need which should be covered as such by national social insurance systems. 5 The inclusion of a full range of Medically Assisted Reproduction (MAR) treatments in the provision of basic health care at least partially depends on the general level of welfare in society. 6 Fertility investigations and treatment should be reimbursed across Europe, and treatments of proven benefit to patients should be made available, irrespective of the patient's income and place of residence. 7 To avoid unjustified discrimination the principles of needs assessment, cost effectiveness and clinical effectiveness should be used to determine the level of 8
  • 20. reimbursement for all assisted reproduction possibilities. Safe and Quality Treatments People with difficulties in conceiving should be given accurate information in a range of formats and languages on all assisted reproduction possibilities, as well as adoption and a life without child, as well as being allowed to accept or to reject the diagnosis or treatment without discrimination. 9 Those undergoing MAR as well as those donating gametes should sign an informed consent document ensuring that the risks and benefits of treatment are described in a balanced, evidence-based framework, and that appropriate warnings are given when evidence is inadequate to assess the efficacy or safety of specific drugs, devices or procedures. 10 Access to psychological counseling should be offered in the framework of fertility11 investigations and treatments. People should be offered implications counseling, particularly if their treatment includes the use of donated gametes and embryos. They should be informed about any potential long term risks and psychological, social and medical ramifications. Prevention and Education Public prevention of infertility has been inadequate to date and governments have a responsibility to promote unbiased rational information about all causes, implications and treatments options to help remove the myths and misunderstandings. 12 Male infertility needs to be highlighted as contributing to half of the causes. Infertility can no longer be considered a “woman’s” problem. 13 Education of the next generation about infertility and its implications needs to start now.14 Patients associations across Europe should be recognized as a driving force behind multi- stakeholders prevention campaigns to make education programmes happen. 15
  • 21. xiii Glossary Assisted Reproduction Technology (ART): all treatments that include in vitro handling of human gametes (eggs and sperm) and embryos to establish a pregnancy – often called MAR (Medically Assisted Reproduction) Delivery rate: number of deliveries per 100 cycles (aspiration or embryo transfer cycles) Embryo: the product up to eight weeks after fertilisation, later it is called a fetus Embryo donation: transfer of an embryo that did not originate from the recipient and her partner Endometriosis: condition where endometrial tissue grows in areas other than the uterine cavity Fertilisation: a sperm penetrates the egg leading to a combination of genetic material resulting in a fertilised egg Gamete: a reproductive cell, egg in females and sperm in males Infertility: a disease of the reproductive system defined by the failure to conceive after 12 months of regular unprotected sexual intercourse Intracytoplasmic sperm injection (ICSI): process by which an egg is fertilised by injecting a single sperm into the egg Intrauterine Insemination (IUI): the insemination of washed semen directly into the uterus In vitro fertilisation (IVF): fertilisation of an egg by sperm in a laboratory dish 21 Fertility Matters - May 2013
  • 23. xiii ESHRE Assisted Reproduction Technology (ART) Glossary http://www.eshre.eu/ESHRE/English/Guidelines-Legal/ART-glossary/page.aspx/1062