Jannett is my patient, who I have been following up since last year when she presented with Lambert Eaton myasthenic syndrome.  The diagnosis was not straightforward, but then neither has her management. Around May,  I realised that the treatment she was on, unlicensed 3,4- diaminopyridine, was due to be withdrawn due to the price hike with licensed Firdapse, as reported this week on bmj.com.  It would be fair to say that I have some experience of campaigning on a variety of issues, and when I realised that the problems around getting Jannett’s medication would centre around a loophole in the orphan drug legislation I decided to campaign.

There was a storm brewing, and it was clear it was going to hit in the autumn.  Jannett and her family are incredibly uncomplaining, despite the fact she spent most of 2009 in hospital and the problems accessing treatment – truly the patient patient. When her 3,4 DAP ran out, she was irritated but surprisingly relaxed “the doctors will work something out.” Yet, we, the doctors were struggling to work out anything out. I contacted the Association of British Neurologists, spoke to colleagues and wrote to my MP and realised that I was going to hit a brick wall. Colleagues told me how they had been in contact with the DoH, the MHRA and the drug company without success. We needed to up the pressure, I asked Jannett what she felt about going to the Press. Jannett said,  “We need to do something, especially when there are other people who have done better on 3,4 DAP than me” (the price hike had just happened just as we were thinking of increasing her dose, fat chance of that happening with no drug). Following detailed legal advice, it seemed to me, that we were missing the point. A pharmacist must respect a doctor’s prescription; from medical school, we always get engrained to write the drug name, not the brand name. Maybe I could use this to our advantage and write “3,4 diaminopyridine NOT Firdapse” and give the prescription to Jannett. Let’s test the system, the pharmacist should respect the wording of my script, its not the MHRA’s job to tell doctors which specific drug they should use. Could this be the highest profile FP10 written? Jannett was up for it, so along came the Channel 4 news crew. There was a touching piece of irony when, despite having got clearance to film from the World and his wife, we were told “Sorry guv, you can’t film here, you need to get permission from the PFI people”. Never underestimate the ability of someone to throw a spanner in the works of the best laid plans in the NHS. Anyhow, after filming, Jannett had her prescription in hand- “the one the MHRA tried to ban”?

Next day, I phoned her up, so what happened,  “I dropped the prescription off at my chemists, but the manager who can look into it is off today, she thinks she may be able to get it but will need about a week.” Somehow 24 hour news era or not, why does it always take so long to get a prescription.  Maybe we should all send a camera crew the next time we need our TTOs. Meanwhile Jannett waits.

David Nicholl is a consultant neurologist at City Hospital, Birmingham