5. 13:05-13:15
PRESENTATION: Global Male Infertility 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 the Global 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 Health Initiative
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 & Age Group
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 the European Sub-Regions
https://fertilityeurope.eu/male-infertility-questionnaire-participate-now/
11. Analysis of the European Sub-Regions
https://fertilityeurope.eu/male-infertility-questionnaire-participate-now/
12. Analysis of the European Sub-Regions
https://fertilityeurope.eu/male-infertility-questionnaire-participate-now/
13. Analysis of the European Sub-Regions
https://fertilityeurope.eu/male-infertility-questionnaire-participate-now/
14. Analysis of the European Sub-Regions
https://fertilityeurope.eu/male-infertility-questionnaire-participate-now/
15. Analysis of the European Sub-Regions
https://fertilityeurope.eu/male-infertility-questionnaire-participate-now/
16. Key Takeaways
Male Attitudes Towards 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 of male (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)
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 are the 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 it look 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 male infertility 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 we do 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 we need to better
understand the male experience?
MARIANA MARTINS
Professor at the University
of Porto, Faculty of
Psychology and Education
26. WHY DO WE NEED TO BETTER UNDERSTAND THE MALE EXPERIENCE?
Mariana Veloso Martins | University of Porto
27. WHY DO WE NEED TO BETTER UNDERSTAND THE MALE EXPERIENCE?
Mariana Veloso Martins | University of Porto
28. WHY DO WE NEED TO BETTER UNDERSTAND THE MALE EXPERIENCE?
Mariana Veloso Martins | University of Porto
29. Increasing awareness of male (in)fertility issues and
addressing the gaps in fertility care and educational
approaches
DISCUSSION Q&A
31. FRANCES FITZGERALD
Member of the 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 access to 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,
DG SANTE, 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
35. • 1. Patients are 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
Open public 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)
39. STAKEHOLDER WORKSHOPS
IN DEPTH DISCUSSION 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
44. imaging
CORRECT DIAGNOSIS (made by 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 accredited andrology 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!
