FACS News
Beyond congenital anomalies, the impact of sodium valproate exposure in utero on long-term health and well-being: A contribution from the ConcePTION project
We are pleased to announce that Denise Astill and Jacki Morris were co-authors on this extremely important research paper. We know that a New Zealand specialist is already using this fantastic paper as evidence to ACC.
FACSNZ knows it is about people and that there is more than congenital malformations at play. While it is a difficult read, it provides such valuable insight into our loved ones with Fetal Valproate Spectrum Disorder as they age.
https://onlinelibrary.wiley.com/doi/10.1002/epi.70330
Senate’s Epilepsy in Australia review
It is with great pleasure that FACSNZ’s submission to the Senate’s Epilepsy in Australia review was taken seriously. As well as FACSNZ being mentioned a number of times in the full report, FACSNZ’s recommendation about an inquiry into pregnancy for those on an anti-seizure medicine has been included in Recommendation 13 where “The committee recommends that the Senate refer an inquiry into the adequacy of healthcare for women with a chronic condition who are planning a pregnancy, are pregnant or breastfeeding…”
You can read FACSNZ’s submission to the Senate committee by clicking this linkhttps://www.facsnz.com/submissions
ELearning with New Zealand College of Midwives
FACSNZ had the great pleasure of collaborating with the New Zealand College of Midwives to produce a wonderful elearning module on “Pregnancy and anti-seizure medicines: Balancing risks and potential harms”. Healthcare professionals FACSNZ recommend that you take this course, you won’t regret it!
Ansm Patient information: Antiepileptics and pregnancy plans
The lived experience of young adults with Fetal Valproate Spectrum Disorder, and the perspective of their parents: A qualitative study
The previously documented symptoms associated with FVSD have a substantial and lifelong impact on the daily lives of people with FVSD and their families. Families desire further research regarding the condition along with improved support and health services to better service this population.
https://www.sciencedirect.com/science/article/pii/S1525505024000611
Restorative response to harm from Foetal Anticonvulsant Syndrome (FACS)
FACSNZ would like to thank the FACS community who were able to take the time to fill in the survey about those harmed by FACS. We are pleased to announce that a report titled “A restorative response to harm from Foetal Anticonvulsant Syndrome (FACS). Findings from a survey of affected consumers” has been authored. A copy of the report can be found here.
“This paper provides an overview of Foetal anticonvulsant syndrome (FACS) in Aotearoa New Zealand (Aotearoa NZ). It explores who is at risk of harm from FACS and how consumers and whānau are affected. Findings from a survey of FACSNZ community members are shared to illustrate their hopes and wishes for a restorative response. The paper concludes by highlighting equity concerns and suggesting next steps.”
The National Collaborative for Restorative Initiatives in Health provided some recommendations which included “FACSNZ could approach Manatū Hauora to request a systemic response, noting that any response would need cross government.” Prudence Walker, Disability Rights Commissioner, Human Rights Commission has written to Dr Sarfati to request a meeting to “…discuss possibilities for a restorative process for people affected by Foetal Anti-Convulsant Syndrome. “
Without the valuable contribution of our FACSNZ community we would never have been able to produce some a valuable report.
“Most respondents (81.9%) indicated that they were experiencing the impacts of the harm severely (everyday), or moderately (most of the time).” Whilst this is probably not surprising to hear about our community, it is saddening to read. Hopefully officials reading this report will understand how life impacting this truly is. Kia kaha
FACSNZ - If it is not safe, it is not care report
FACSNZ has complied a report to share their knowledge, and to provide recommendations to key government agencies following their attendance at the Fifth Global Ministerial Summit on Patient Safety
A copy of their report can be found here
ICD-11 Update
We are pleased to announce that Fetal Valproate Spectrum Disorder is now officially part of the ICD-11 (latest version) - World Health Organisation.
We were part of the team that was successful in ensuring this happened.
It is not a diagnostic tool. It catalogues known human diseases, medical conditions, and mental health disorders and is used for insurance coding purposes, for statistical tracking of illnesses, and as a global health categorisation tool that can be used across countries.
It is incredibly important that FVSD is coded, as approximately 70% of health funding internationally is based on the ICD.
https://icd.who.int/browse11/l-m/en...
LOPE Petition
It is with great sadness that we have to announce that our petition to increase the Loss of Potential Earnings (LOPE) from 80% minimum wage to 100% median wage was declined in 2021.
In August we were advised that our petition was being removed from the Education and Workforce Committee and being given to the ACC Minister (Hon. Carmel Sepuloni). We requested a meeting with the Minister, to address some of the matters that we would have raised during an oral submission to the Education and Workforce Committee, but no meeting was forthcoming.
Instead, in November, we received notification that our petition, along with four other petitions (some of which had nothing to do with LOPE) had been declined.
What saddens us the most out of all of this is that you, our FACS whānau, who this affects, did not get your opportunity to get your voice heard.
https://www.parliament.nz/.../69602f0b745ba33f37a1a3692c6...
New Foil on Epilim medication
Check out the old versus new foil that has the pregnancy pictogram on it. We have been advised from Medsafe that they believe this is the first ever medicine in New Zealand to get a pregnancy pictogram warning on the foil.
After FACSNZ was originally told no that it wasn't possible, we made it possible!
Foetal Anti-Convulsant Syndrome New Zealand (FACSNZ) is excited to announce that we have partnered with Plunket
… to develop a training module for Plunket nurses. This module will help with assessing babies who may have been harmed by the use of antiepileptic medicines during pregnancy and identify at risk mothers. Plunket nurses will then be able to provide the correct support for the whanau and refer them to the appropriate support agencies.
Epilim: Hundreds of babies exposed to medicine known to cause birth defects 10th August 2019
Anti-epileptic drug sodium valproate faces restrictions after 26 babies born with serious disorder - New Zealand Herald 10th March 2019
https://www.nzherald.co.nz/spotlight/news/article.cfm?c_id=1504095&objectid=12211242
Tighter controls on epilepsy drug 'don't go far enough' to prevent harm to unborn babies - Stuff New Zealand 5th March 2019
Risks of anti-epileptic drugs during pregnancy- Radio New Zealand 25 January 2019
Health Select Committee
The Health Select Committee met again to hear the submissions from Ministry of Health/Medsafe and ACC. Here is a link to the live stream that was recorded on the day via Facebook https://www.facebook.com/facsnz/videos/318869522230995/ . Denise’s right of response can be viewed on YouTube https://www.youtube.com/watch?v=V9RgoyBSnvA
Denise Astill’s first presentation to the Health Select Committee was on Wednesday 26 of September 2018. To see her rehearsal please go to https://www.youtube.com/watch?v=4-w99lxH8zw
To read all of the submissions please go to https://www.parliament.nz/en/pb/sc/scl/health/tab/submissionsandadvice?criteria.Keyword=astill&criteria.Timeframe=&criteria.DateFrom=&criteria.DateTo=
Calls for public inquiry into anti-epileptic medicine use during pregnancy
Sodium Valproate in the news
http://www.radionz.co.nz/news/world/329200/research-confirms-epilepsy-drug-birth-defects
http://www.bbc.com/news/world-europe-39657139
FACS NZ - Making Change Happen!
FACS NZ are so pleased to announce that all of the hard work that we have pushed for in regards to Sanofi putting warnings on the NZ (and Australia) Epilim boxes has come into fruition. Today one of our mum's who has a child affected picked up her medication and it was on there.
Such a win!
**PLEASE DO NOT STOP TAKING YOUR MEDICATION WITHOUT SPEAKING TO YOUR HEALTHCARE PROFESSIONAL**
Anti-convulsant syndrome awareness
https://www.odt.co.nz/regions/north-otago/anti-convulsant-syndrome-awareness
Toolkit on the risks of valproate medicines in female patients (Article from the UK)
Campaigner hails new warnings on anti-epilepsy medication
Mum unaware her epilepsy drugs could harm her twins
https://www.tvnz.co.nz/one-news/new-zealand/mum-unaware-her-epilepsy-drugs-could-harm-twins
Use of Sodium Valproate (Epilim) in pregnancy
http://www.medsafe.govt.nz/safety/EWS/2015/sodiumvalproate.asp
Highlighting foetal syndrome
http://www.odt.co.nz/news/dunedin/350907/highlighting-foetal-syndrome
Drug Nightmare for Mums
http://www.stuff.co.nz/national/health/10576738/Drug-nightmare-for-mums
MHRA Article from the UK
https://www.gov.uk/government/news/stronger-advice-on-the-use-of-valproate-medicines-in-women
