Advocacy in Action – PGT-M Acceptance Through Experience
Success! Thanks to the Genetic Alliance UK for advocating for one family with PFIC Type 4, and the strong advocacy work of another family who is dealing with PFIC type 3, the list of PFIC subtypes that has been added to the list of PGT-M conditions currently approved by HFEA has expanded to include all PFIC types identified by the OMIM. Check it out! https://www.hfea.gov.uk/pgt-m-conditions/?condition=PFIC
What does this mean?
This is in follow up to the survey we asked the community take on behalf of Genetic Alliance UK as they advocated for preimplantation genetic testing (PGT-M) for PFIC 4 with Human Fertilisation and Embryology Authority (HFEA) who licenses the process. To recall, why did we ask you to take this survey on behalf of Genetic Alliance? Essentially, a family in the UK with a history of PFIC 4 has applied for PGT-M to conceive a child that will not have the genetic condition. Your help was requested because the HFEA makes their decision based upon whether the condition is ‘sufficiently serious’ enough to license PGT-M, and they use perspectives from people with lived experience, caregiver or patient. All experiences with PFIC were welcome, especially those with deafness related to PFIC 4.
The Genetic Alliance UK created a survey to provide the patient voice on the issue and asked the PFIC Network community for support in filling it out. They received multiple responses from the PFIC community which helped them to make their case! Your voice helped to make this happen, so thank you to all who participated!