Medical treatment

[simon111]

Hi everyone

My 13 year old son has fa.we live in uk but he was diagonised last year while we were on holiday in Ireland. The doctor in Ireland has agreed to treat him with interferon gamma.

My question is will he be covered under nhs or will he require an iriah medical card

I hope some of you will be able to help with some info

Thank you Mary

[HarryB Administrator]

Hi Mary

Thank you for your question. Interferon Gamma is still at the trial stage and as such is not licensed for use in FA. I know it is licensed for use in other conditions. I assume your son is either entering the drug trial to ascertain whether it is helpful in patients with FA or is receiving interferon gamma off licence on a 'named patient' basis.

I am afraid I do not know who will fund the treatment. I would advise contacting the doctor in Ireland and asking him/her.

Best wishes

Harriet

[murcia]

I have F/A & as far as I know there is no treatment for F/A I'd be very careful

[scamper]

Hi Mary

We live in the UK and my daughter is on the interferon trial in the US. My understanding is it is very expensive and as yet not approved for FA so unlikely to be prescribed here from nhs. But if you do go ahead please make sure he gets monitored regularly - she has been checked at least once a month whilst on the drug - also the dosing is weight dependent and should start low.

Good Luck

[simon111 in reply to scamper]

Hi Scamper

Thank you for advice there is a top cardiologist and a neurologist involved in the treatment

[Fifa20 in reply to scamper]

Hi my son has fa he was diagnosed 7 years ago he is 20 now could you please tell me how your daughter was recruited for the interferon trial in the us please and could you give me the details please

[scamper in reply to Fifa20]

Hi Shez - she registered on the FARA patient register ( all FA patients can ) she has been on the register for around 4 years now. She applied for the trial last July when the trial notification came out and was accepted.

[Fifa20]

Hi simon

Could you please give me the details forthis interferon gamma treatment in ireland please my son also has fa