Helen ScottThursday, March 06, 2014 12:29:00 pm
‘In Australia, it has been possible to trial Ampyra, known as Fampyra here for four weeks free. This is effectively sufficient time to ascertain whether this drug will work for the individual – as the reported data suggests around 35% of MSers will benefit. I took the drug for the four week trial, and yes, I am one of the fortunate persons for whom this drug was very successful, it did increase my walking speed by a measurable 25%. I could not attest to any benefit for fatigue. What I did observe, curiously, was a return to sharper vision in one eye that was a little blurry. Biogen makes this drug cost prohibitive for most MSers in Australia, around $600 per month. There is a current application before our Pharmaceutical Benefit Scheme to have Fampyra this listed on this scheme, which will reduce the price to around $5.90 for concession card holders and $33.00 for non concession.
So, you may ask – what has happened to those of us who have successfully completed the trial and cannot afford the $600.00 per month? Solution – a number of our neurologists are prescribing scripts for the active ingredient 4-aminopyridine in slow release which we source from compounding pharmacies who make up the scripts. There are slightly more risks with the variability in compounding, but for me, I sourced an excellent pharmacy that made me a dedicated batch for six months supply for $96.00 whilst awaiting PBS listing. I trialled the Fampyra in November -December and commenced the compounded version immediately after the Fampyra limit was exceeded. I am happy to report that I have not found any difference in function between the Fampyra and the compounded 4-aminopyridine.’
In signing this form, I understand/acknowledge that:
- I will be initially prescribed and supplied with up to 4 weeks of Fampridine, during which my response to treatment will be assessed.
- Fampridine (including delivery) will be provided free of charge by Biogen-Idec for the initial treatment period (up to 4 weeks), and that I will be responsible for any additional costs imposed by local groups/bodies (such as, but not limited to; dispensing fees, tariffs, duties, etc.).
- Should I not respond to Fampridine, treatment will be discontinued.
- Should I respond to Fampridine and wish to continue with therapy after the initial treatment period (up to 4 weeks), I understand that, as a private patient, this will be by private prescription for which I will be required to pay.
- Biogen-Idec has no involvement in, or funding responsibilities beyond, the supply of Fampridine during the initial treatment period (up to 4 weeks).
- My physician has explained this process to me and I have had the opportunity to have any questions answered fully.
- I agree that my personal details can be shared with the homecare delivery company for the purpose of supplying Fampridine.
“This private access scheme for fampridine, and a similar one for Sativex, is the catalyst for our ongoing debate on private prescribing in the NHS. The founding principles of the NHS are that it is free at point of access and equitable, i.e. it does not matter who you are (rich or poor) you will have the same level of care under the NHS. These access schemes, or the change of policy that allowed them, destroys both these principles in one foul swoop. If you respond to the fampridine trial you will then have to pay for the drug privately. As you are essentially receiving the prescription for the drug via an NHS clinic, and being monitored in the NHS, the principles of your healthcare being free at point of access and equitable don’t exist.”
“If you are interested in this debate you may want to read our previous posts on private prescribing in the NHS and the results of our survey on this topic. As a consultant who looks after MSers I am in a quandary; I look after individuals with MS and I am obliged to do the best I can for them. At the same time I work in the NHS and cherish its values. As a nation it appears we can’t afford the NHS any more. It is changing so fast that I am preparing myself for a two-tiered system of haves and have-nots. It is clear from what the politicians are saying, or not saying, is that universal healthcare is too expensive to maintain in this time of austerity. It is a great pity that the coalition government didn’t tell us this when they allowed private prescribing in the first place. I suspect they want to privatise the NHS by stealth. I also suspect that there is cross party consensus on this as none of the major parties made a noise about it. I suppose the threat of bankruptcy focuses the mind and in this case policy as well.”
“Please note that Australia has a two-tiered healthcare system in place and there are tax incentives in place to encourage the wealthy to receive their healthcare in the private sector. The system also allow individuals to take their state-funded, or NHS money, into the private sector to cover a proportion of the healthcare costs. What the private sector is doing is essentially topping-up the what the state is prepared to pay for healthcare. This allows the country to afford universal healthcare. The Australian system acknowledges the need for rationing at a state level, but also the need for a basic level of universal healthcare. It does mean there is a difference between what you can access based on your income. I suspect this is what Whitehall Mandarins, and the political parties, want in the UK. The survey results below support this. May be you disagree?”
- Multiple Sclerosis Research: Access to fampridine in England
- Multiple Sclerosis Research: Private prescriptions within the NHS
- Private prescribing in the NHS – Multiple Sclerosis Research – Blogger
- Survey results: private prescribing in the NHS – Multiple Sclerosis …
- Politics: the Birth of the NHS….Is the Death of the NHS Coming?