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EFW2021 roundtable presentation
- 1. 3 NOVEMBER 2021 13:00-15:00CET Raising awareness of fertility issues and ensuring equitable access to fertility care across Europe for all.
- 2. EVENT OPENING PREDRAG FREDMATIĆ Member of the European Parliament SATU RAUTAKALLIO-HOKKANEN Chair of Fertility Europe Executive Committee
- 3. TOM WEBB Film maker,Realisator of the documentary ‘The Easy Bit’ Video message
- 4. Let’s have apoll!
- 5. 13:05-13:15 PRESENTATION: Global MaleInfertility Questionnaire by Christopher De Jonge, Male Reproductive Health Initiative 13:15-14:00 PANEL DISCUSSION: Increasing awareness of male (in)fertility issues and addressing the gaps in fertility care and educational approaches 14:00-14:05 BREAK 14:05-14:45 PANEL DISCUSSION: Ensuring equitable access to fertility screenings and treatment across Europe for all 14:45-15:00 EVENT CLOSURE EVENT AGENDA
- 6. Presentation of theGlobal Male Infertility Questionnaire CHRISTOPHER DE JONGE Co-Lead of Male Reproductive Health Initiative Director, Andrology Program, University of Minnesota Medical Center Adjunct Professor, Department of Urology, University of Minnesota
- 7. Male Reproductive HealthInitiative A Global Questionnaire on Male Attitudes Towards Infertility Christopher De Jonge, University of Minnesota Satu Rautakallio-Hokkanen, Fertility Europe Christopher Barratt, University of Dundee Steve Gellatly, University of Dundee MRHI Working Group https://fertilityeurope.eu/male-infertility-questionnaire-participate-now/
- 8. The Questions: 1. Nationality 2.Age group 3. What motivated you to seek medical help for your infertility? 4. How do you view your infertility? 5. How likely do you talk about your infertility with others? 6. Is there a male infertility support group in your country? 7. From where have you primary searched information about male infertility? 8. Has an infertility specialist recommended herbal supplements to you as a treatment for your infertility?
- 9. Nationality & AgeGroup https://fertilityeurope.eu/male-infertility-questionnaire-participate-now/ # Respondents Sub-region # Respondents 978 (93%) Eastern Europe 380 Northern Europe 46 Southern Europe 415 Western Europe 137 9 North Africa 5 Sub-Saharan Africa 4 28 North America 6 Latin America and the Carribean 22 31 Central Asia 1 Eastern Asia 5 Southern Asia 16 Western Asia 9 7 Australia and New Zealand 7 Melanesia Micronesia Polynesia
- 10. Analysis of theEuropean Sub-Regions https://fertilityeurope.eu/male-infertility-questionnaire-participate-now/
- 11. Analysis of theEuropean Sub-Regions https://fertilityeurope.eu/male-infertility-questionnaire-participate-now/
- 12. Analysis of theEuropean Sub-Regions https://fertilityeurope.eu/male-infertility-questionnaire-participate-now/
- 13. Analysis of theEuropean Sub-Regions https://fertilityeurope.eu/male-infertility-questionnaire-participate-now/
- 14. Analysis of theEuropean Sub-Regions https://fertilityeurope.eu/male-infertility-questionnaire-participate-now/
- 15. Analysis of theEuropean Sub-Regions https://fertilityeurope.eu/male-infertility-questionnaire-participate-now/
- 16. Key Takeaways Male AttitudesTowards Infertility Men 20-29 yrs old are more self-motivated to seek medical help for infertility Men 20-39 yrs old are more likely to talk with others about their infertility Most men are unaware of infertility support groups Men are more likely to receive infertility information from their partner’s doctor. Young men rely upon social media more frequently than older men Doctors recommended herbal supplements to treat infertility in 50% of all men https://fertilityeurope.eu/male-infertility-questionnaire-participate-now/
- 17. Increasing awareness ofmale (in)fertility issues and addressing the gaps in fertility care and educational approaches BENEDIKT SCHWAN Science Journalist & Author MARIANA MARTINS Professor at the University of Porto, Faculty of Psychology and Education KLAUDIJA KORDIC Representative of Patient Association Roda (Croatia)
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- 19. The Silent „Shame”of Male Infertility KLAUDIJA KORDIC Representative of Patient Association Roda (Croatia)
- 20. The Silent „Shame”of Male Infertility Infertility -> taboo Infertility = barenness - incapability of producing offspring —used especially of FEMALES or matings - „barren women” Barrenness: late 14c., "incapacity for child-bearing" (of women)
- 21. But what arethe reasons for MALE INFERTILITY not being talked about? • Male reluctant to talk • Sperm analysis - some refuse to make a test or visit a fertility specialist • Male Infertility ≠ impotence
- 22. What does itlook like for many couples? When he got the diagnosis, he was in a very bad situation for a quite a long time… not willing to talk to me although I asked, offered support, I simply could not reach him - he shut himself away from me and seemed very depressed. Even now - having had fertility treatments for more than three years now - he is not able to talk about it, he is hiding the diagnosis and even the treatments from friends and even his parents, we simply pretend we are ok without children.
- 23. What does maleinfertility look like in real life? My grandmother told me to find another man for THIS and to try to solve this problem „the other way”, she even told me that my husband does not have to know. And this way, she told me, is the way some women from her village „solved” their fertility issues decades ago… and eventually became parents.
- 24. What can wedo to help? o FOR THE MEDIA: spread the word and support us in breaking taboos o FOR FRIENDS AND FAMILY: show support, listen and inform yourself about infertility o FOR POLICY MAKERS: become aware and recognize, make highest priority o FOR PATIENT ASSOCIATIONS: be more inclusive towards male patients, create space for them INFERTILITY IS A DISEASE – THERE IS EFFICIENT TREATMENT • NECCESSARY SUPPORT • ACCESS TO TREATMENTS • RIGHT TO TRY TO BECOME PARENTS WITHOUT EXCEPTION IN EUROPE
- 25. Why do weneed to better understand the male experience? MARIANA MARTINS Professor at the University of Porto, Faculty of Psychology and Education
- 26. WHY DO WENEED TO BETTER UNDERSTAND THE MALE EXPERIENCE? Mariana Veloso Martins | University of Porto
- 27. WHY DO WENEED TO BETTER UNDERSTAND THE MALE EXPERIENCE? Mariana Veloso Martins | University of Porto
- 28. WHY DO WENEED TO BETTER UNDERSTAND THE MALE EXPERIENCE? Mariana Veloso Martins | University of Porto
- 29. Increasing awareness ofmale (in)fertility issues and addressing the gaps in fertility care and educational approaches DISCUSSION Q&A
- 30. NEXT SESSION Ensuring equitableaccess to fertility screenings and treatment across Europe for all starts at 14:05 CET
- 31. FRANCES FITZGERALD Member ofthe European Parliament, Ireland BARTOSZ ARŁUKOWICZ Member of the European Parliament, Poland Ensuring equitable access to fertility screenings and treatment across Europe for all Video messages from:
- 32. Ensuring equitable accessto fertility screenings and treatment across Europe for all DEIRDRE FAHILY European Commission, DG SANTE, Substances of Human Origin Team CARLOS CALHAZ-JORGE Chair, European Society of Human Reproduction and Embryology NEIL DATTA Secretary, European Parliamentary Forum for Sexual and Reproductive Rights CSILLA KRAUSZ President, European Academy of Andrology
- 33. DEIRDRE FAHILY European Commission, DGSANTE, Substances of Human Origin Team Revision of the EU legislation on blood, tissue and cells - the impact on medically assisted reproduction activities in the EU
- 34. Health 34 REVISION OFTHE EU LEGISLATION ON BLOOD, TISSUES AND CELLS 03/11/2021
- 35. • 1. Patientsare not fully protected from avoidable risks EU safety and quality requirements are incomplete and have failed to remain up to date with frequently changing scientific and epidemiological developments. The outdated provisions are technical in nature 5 Gaps/shortcomings identified • 3. Divergent approaches to oversight cause unequal levels of safety and quality and barriers to the exchange of BTC across the EU Lack of general principles, provisions for verification of effective implementation of inspection, authorisation, vigilance. • 2. Avoidable risks for BTC donors and for children born from donated eggs, sperm or embryos Donor adverse reactions (including serious ones) are not systematically reported and the requirements for testing egg and sperm donors for genetic conditions are limited. • 4. BTC legislation lags behind innovation Limited clinical data on safety and efficacy of new ways of processing donations. Difficulties in defining the borderlines for novel BTC with other regulatory frameworks • 5. EU vulnerable to interruptions in supply of some BTC High dependence on plasma import. Lack of supply monitoring for crisis management. Evaluation BTC legislation (2019)
- 36. Inception Impact Assessment/Roadmap Openpublic consultation (EU Survey) + targeted consultation 2 studies to gather evidence BTC Revision – Impact Assessment and Legal Proposal – 2021 https://ec.europa.eu/health/blood_tissues_organs/policy/revision_en Impact Assessment of various policy options Proposal for revised Legislation adopted by COM 214 + 160 submissions (closed 15.04.2021) 1. ICF Evidence gathering to support the Impact Assessment – Workshops, survey and expert interviews; borderline case studies, cost:benefit analysis Commission Impact Assessment Report – end 2021/early 2022 Legal proposal – end 2021/early 2022 2. Deloitte SoHO – X study - Exploring the options for the future digital system needs of the sector to support the implementation of the new legislation - Workshops in September – study continues into 2022 80 responses (closed 12.2020)
- 38. Online Public Consultation– Summary Report Published
- 39. STAKEHOLDER WORKSHOPS IN DEPTHDISCUSSION WITH AUTHORITIES AND KEY ASSOCIATIONS ICF Study – key stakeholders and interested authorities – interactive discussions Donor and offspring protection – medically assisted reproduction • EU donor registry essential • Genetic testing and matching for gamete donors • Rules for frequency and compensation • PO2 preference Improving oversight - operators Improving oversight - authorities 25/05 26/05 18/05 • Strong support for principles on independence, no conflict of interest, skills and capacity, transparency. • Concerns on resources • Strong support for principles on independence, no conflict of interest, skills and capacity, transparency. • Calls for more mutual harmonisation and mutual recognition Keeping technical rules up to date - BTC • Policy option 2 preference • Principles in legislation • Governance of guidance development 06/05
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- 41. CSILLA KRAUSZ President, European Academyof Andrology Andrologist: the specialist of male health
- 42. Csilla Krausz President ofthe EAA University of Florence Andrologist: the specialist of male health. From boys to aging men
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- 44. imaging CORRECT DIAGNOSIS (madeby an expert) allows: I) PREVENTIVE MEASURES (erectyle dysfunction versus hearth disease, transmisison of genetic factors etc etc) II) MOST APPROPRIATE TREATMENT (not always ART) III) LONG TERM FOLLOW-UP (high risk men for testis or prostate cancer; early intervention in case of hypoandrogenism, etc etc) “Andrologist: the specialist of male health”
- 45. 27 EAA accreditedandrology Centers all over Europe How do we educate doctors to become andrologists? STILL NOT ENOUGH ! More training centers, more CERTIFIED ANDROLOGISTS are needed in the EU!
- 46. CARLOS CALHAZ-JORGE Chair, European Societyof Human Reproduction and Embryology The partner in the shadow - how can ESHRE help?
- 47. Carlos Calhaz-Jorge The partnerin the shadow. How can ESHRE help?
- 48. Education Research + Training for professionals Support for initiatives Infertility awareness campaigns Education for Health •Special interest Group of Andrology • Campus Workshops and technical courses • Research Grants •Policy-makers involvement •Very long duration projects •Evaluation issues •Reproductive Male Health Initiative •International Fertility Education Initiative •Fertility Europe •National school programmes •EU educational projects •EP involvement
- 49. NEIL DATTA Secretary, European Parliamentary Forumfor Sexual and Reproductive Rights
- 50. Increasing awareness ofmale (in)fertility issues and addressing the gaps in fertility care and educational approaches DISCUSSION Q&A
- 51. CLOSING REMARKS PREDRAG FREDMATIĆ Member of the European Parliament SATU RAUTAKALLIO-HOKKANEN Chair of Fertility Europe Executive Committee
- 52. #ChallengeTheOdds #EuropeanFertilityWeek Thank you allfor joining! www.fertilityeurope.eu