INFERTILITY DISEASES WE FORGOT TO PREVENT. Søren Ziebe Professor, cand.scient., dr.med. Fertilitetsklinikken Rigshospitalet Danmark

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1 INFERTILITY DISEASES WE FORGOT TO PREVENT Søren Ziebe Professor, cand.scient., dr.med. Fertilitetsklinikken Rigshospitalet Danmark

2 MISSION Our goal is to ensure that young people have a greater understanding and awareness of fertility and reproductive health so they are equipped with the right information to make an informed choice about their own fertility journey

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4 Pregnancy chance per cycle Fertility in natural cycles , Age of the woman

5 Pregnancy chance per cycle Fertility in natural cycles Average age at first birth in Denmark, Sweden, Norway and Finland , Age of the woman

6 Danmark 1,7 barn pr kvinde (incl. fertilitetsbehandling)

7 Danmark ~1,6 barn pr kvinde (uden fertilitetsbehandling)

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9 Denmark 1 in 5 men never have children

10 Denmark 1 in 10 women never have children or have fewer children than they wished for

11 Denmark 9 % of all children are conceived at the fertility clinics

12 Sweden

13 Norway

14 Sweden

15 International perspective

16 Birth cohorts in Denmark Introduction of the p-pill Free abortion Birth cohort Birth cohort minus ART

17 Birth cohorts in Denmark Introduction of the p-pill Free abortion Birth cohort Birth cohort minus ART years later Small birth cohorts produces small birth cohorts

18 Birth cohorts in Denmark Introduction of the p-pill Free abortion Birth cohort Birth cohort minus ART

19 Birth cohorts in Denmark Introduction of the p-pill Free abortion Birth cohort Birth cohort minus ART Mean age of woman at first birth ~ 29 years Mean age of woman at first birth ~24 years Mean age of woman at first birth after ART ~33 years

20 Number of children by age of the first child Birth cohort 1983 Birth cohort 2012 Infertile couples 2012

21 CAN WE CHANGE THE PERSPECTIVE? From treating childlessness to building families

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24 At least 90 % of all infertility is a result of diseases Later tonight Josephine will get Chlamydia... Peter already has it!

25 Infertility is by far the most prevalent chronical disease in the age group compared to other serious chronical diseases 14% 12% 10% 8% 6% 4% 2% 0% Heart attack Cancer Diabetes Asthma Mental disorder (>6 months) Infertility Lone Schmidt and Sundhedsprofil 2013 (National Board of Health)

26 Survey conducted for the Danish and Swedish Fertility Awareness group 2013 and 2016 Infertility is a major health problem/disease To what degree would the following conditions Impact your psychological wellbeing? Women % Cumulated ARTHRITIS INFERTILITY CARDIOVASCULAR DISEASES % Cumulated % Cumulated To very high degree ,7% ,2% ,5% To high degree ,4% ,1% ,9% To some degree ,9% 91 80,1% ,7% To a lesser degree 40 97,4% 39 87,5% 18 97,2% Not at all 5 98,4% 36 94,2% 4 98,0% Don t know 8 100% % %

27 Survey conducted for the Danish and Swedish Fertility Awareness group 2013 and 2016 Infertility is a major health problem/disease To what degree would the following conditions Impact your psychological wellbeing? Women % Cumulated ARTHRITIS INFERTILITY CARDIOVASCULAR DISEASES % Cumulated % Cumulated To very high degree ,7% ,2% ,5% To high degree ,4% ,1% ,9% To some degree ,9% 91 80,1% ,7% To a lesser degree 40 97,4% 39 87,5% 18 97,2% Not at all 5 98,4% 36 94,2% 4 98,0% Don t know 8 100% % %

28 Survey conducted for the Danish and Swedish Fertility Awareness group 2013 and 2016 Infertility is a major health problem/disease To what degree would the following conditions Impact your psychological wellbeing? Women % Cumulated ARTHRITIS INFERTILITY CARDIOVASCULAR DISEASES % Cumulated % Cumulated To very high degree ,7% ,2% ,5% To high degree ,4% ,1% ,9% To some degree ,9% 91 80,1% ,7% To a lesser degree 40 97,4% 39 87,5% 18 97,2% Not at all 5 98,4% 36 94,2% 4 98,0% Don t know 8 100% % %

29 Survey conducted for the Danish and Swedish Fertility Awareness group 2013 and 2016 Lack of information on infertility is a major problem Do you agree or disagree with the following statement? Involuntary childlessness can be due to stress in either the woman or the man All % Cumulated To very high degree ,2 To high degree ,7 To some degree ,4 To a lesser degree 44 82,4 Not at all 39 86,1 Don t know ,0 Total 1081 Do you agree or disagree with the following statement? Involuntary childlessness can be due to previous use of contraceptive pills % Cumulated To very high degree 78 7,2 To high degree ,8 To some degree ,7 To a lesser degree ,9 Not at all ,4 Don t know ,0 Total 1081

30 Survey conducted for the Danish and Swedish Fertility Awareness group 2013 and 2016 Lack of information on infertility is a major problem Do you agree or disagree with the following statement? Involuntary childlessness can be due to stress in either the woman or the man All % Cumulated To very high degree ,2 To high degree ,7 To some degree ,4 To a lesser degree 44 82,4 Not at all 39 86,1 Don t know ,0 Total 1081 Do you agree or disagree with the following statement? Involuntary childlessness can be due to previous use of contraceptive pills All % Cumulated To very high degree 78 7,2 To high degree ,8 To some degree ,7 To a lesser degree ,9 Not at all ,4 Don t know ,0 Total 1081

31 Survey conducted for the Danish and Swedish Fertility Awareness group 2013 and 2016 In your family is it considered best not to have children until you have finalized your education? Number (%) Yes ,3 No ,4 Don t know ,2 Total ,0 University education in Denmark Women Men

32 Survey conducted for the Danish and Swedish Fertility Awareness group 2013 and % 50% ASKING THE MEN When are you ready? Mature enough First child Last child 40% 30% 20% 10% 0% < Don't know

33 Examples of Fertility Awareness Relatered activities: Surveys MaybeBaby.dk Miljøministeriet og Sundhedsministeriet Sex education Sex & Samfund Poster campagns with the city of Copenhagen Knald for Danmark 1,5 hour Saturday evening prime time TV Vidensråd for forebyggelse Udarbejdelse af rapport Fertility counseling Fertility ambassadors ReproUnion Fertility Awareness

34 VIDENSRÅD FOR FOREBYGGELSE 2016

35 Stay out of my personal life. Some times campaigns at least can create attention

36 Focus on the men.

37 And infertility is a problem in many countries including Singapore

38 Fertility awareness initiative - Joining the debate (?) in the other Nordic countries #Somethingsmissing In collaboration with Nordic Fertility Society and the national fertility societies

39 Fertility ambassadors

40 Fertility ambassador Hvad har det betydet for dig at få børn? For mig har der været en enorm stolthed forbundet med at blive far. At være far er blevet en integreret del at min identitet, og der ligger en fantastisk tilfredsstillelse i at have bragt noget så smukt til verden. Samtidig er der en stor sårbarhed forbundet med at være forælder. Jeg er ikke konstant bekymret eller overbeskyttende, men jeg mærker det i andre sammenhænge. Måske er jeg blevet et mere emotionelt menneske af at få børn. Var det svært at tage beslutningen om at få børn? Jeg mødte min kone da vi begge var firetyve. Hun insisterede fra dag ét på at få børn i 20 rne, og absolut senest sidst i 20 rne. Hendes vigtigste argument var fertiliteten. Det syntes jeg var tidligt, og jeg skulle bruge tid på at vænne mig til tanken. Jeg var ganske enkelt bange for at miste min ungdom. Jeg havde forestillingen om, at jeg skulle være færdig med at være ung, før jeg på ansvarlig vis kunne hellige mig forælder rollen. Det der for alvor smadrede det billede, var da jeg så tætte venner få børn. Det var drenge jeg kunne identificere mig med, der viste mig, at man ikke behøvede at blive ældgammel sekundet barnet kom. Det gav mig meget mere mod på selv at komme i gang. Har det at få børn haft betydning for dit arbejde og karriere? Jeg nåede at stoppe som cykelrytter, inden min søn kom til verden. Timingen i at få børn var aldrig afhængig af mit professionelle liv. Jeg kender mange gode fædre i cykelsporten, som jeg beundrer, og som er levende eksempler på at tingene godt kan hænge sammen. Men nu når jeg er ude af gamet, er det svært at forestille sig, at have 200 rejsedage om året. Til gengæld startede jeg på universitetet to uger efter jeg blev far. Det kan indimellem være et modsætningsfyldt liv. Om aftenen drikker man shots med 20 årige medstuderende i fredagsbaren, og lørdag morgen går man til babysvømning med lille Alfred. TIDL. PROF.CYKELRYTTER OG STUDERENDE ANDERS LUND FERTILITETSAMBASSADØR

41 Fertility ambassadors examples Adam Duvå Hall Tv-vært Camilla Hersom Formand Danske Patienter & ViBIS Karin Friis Bach Formand for Region H s Sundhedsudvalg Christian Friis Bach Undergeneralsekretær i FN og tidl. minister (R) Sophie Hæstorp Andersen Regionrådsformand Lillian Bondo Formand for Jordemoderforeningen Lina Rafn Sanger, sangskriver og producer Rolf Sørensen Tidl. professionel cykelrytter Kommentator og cykelekspert på TV2 Ninna Thomsen Sundheds- og Omsorgsborgmester i København

42 There are reproductive opportunities and challenges for every generation Illegal abortion at age 19 The pill from age 21 IVF at age 38 9 % of all grandchildren in Denmark is a result of assisted reproduction

43 THINK TANK: NORDIC CENTER FOR FERTILITY AWARENESS

44 NORDIC CENTER FOR FERTILITY AWARENESS FROM IDEALISM AND SPARE TIME TO PROFESIONALISM AND FULL TIME

45 NORDIC CENTER FOR FERTILITY AWARENESS SAME PROBLEMS SAME SOLUTIONS - DEVELOPED TOGETHER

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47 NORDIC CENTER FOR FERTILITY AWARENESS MISSION Our goal is to ensure that young people have a greater understanding and awareness of fertility and reproductive health so they are equipped with the right information to make an informed choice about their own fertility journey SAME PROBLEMS SAME SOLUTIONS - DEVELOPED TOGETHER

48 NORDIC CENTER FOR FERTILITY AWARENESS MISSION Our goal is to ensure that young people have a greater understanding and awareness of fertility and reproductive health so they are equipped with the right information to make an informed choice about their own fertility journey That legislative and administrative bodies are equipped with available evidencebased information enabling prioritized decision making including also reproductive consequences SAME PROBLEMS SAME SOLUTIONS - DEVELOPED TOGETHER

49 NORDIC CENTER FOR FERTILITY AWARENESS MISSION Our goal is to ensure that young people have a greater understanding and awareness of fertility and reproductive health so they are equipped with the right information to make an informed choice about their own fertility journey That legislative and administrative bodies are equipped with available evidencebased information enabling prioritized decision making including also reproductive consequences To develop, implement and communicate solutions and strategies addressing shared reproductive challenges in the Nordic countries SAME PROBLEMS SAME SOLUTIONS - DEVELOPED TOGETHER

50 Nordic Center for Fertility Awareness support letters Landsforeningen for Ufrivilligt Barnløse (Patientforening, DK) Danske Patienter (Paraplyorganisation for patient- og pårørendeforeninger i Danmark) Sex og Samfund (DK) The Family Federation of Finland (Søsterorganisation til Sex & Samfund) Nordic Fertility Society (Den nordiske paraplyorganisation for samtlige nationale fertilitetsselskaber) Dansk Fertilitetsselskab Swedish Society of Reproductive Medicine Norsk Forening for Assistert Befruktning Suomen Fertiliteettiyhdistys IVF-klinikken på Island Nordisk Jordmorforbund på vegne af jordemoderforeningerne fra Danmark, Sverige, Finland, Norge, Færøerne og Island.

51 Nordic Center for Fertility Awareness

52 NORDIC CENTER FOR FERTILITY AWARENESS