Duodopa

Virendra Sharma Excerpts

Tuesday 31st January 2017 Westminster Hall

[Mr Virendra Sharma (Ealing, Southall) (Lab)]

I beg to move,

That this House has considered access to Duodopa.

It is a pleasure to serve under your chairmanship, Sir Edward. I thank the Minister for sparing the time to respond to this limited debate this afternoon. The subject is a serious one, especially for those people who contend with advanced Parkinson’s disease and have so few effective medications on which they can rely to give them some control over their symptoms.

For the benefit of anyone who might not be familiar with the condition, I will briefly explain what Parkinson’s is. Parkinson’s disease is a degenerative neurological disorder. It affects all aspects of daily living, including talking, swallowing and writing. People with the condition often find it hard to move freely, but there are also other issues, such as pain, depression, dementia, hallucinations and continence problems. The severity of symptoms can fluctuate from day to day, and people can experience rapid changes in functionality in the course of a day.

There is no cure, but there is a small selection of treatments suitable for a few people in the advanced stages of the condition. Those treatments include the drug Duodopa. I was involved in the campaign to allow routine prescribing of Duodopa without recourse to special, case-by-case requests by clinicians. Since 2015, the treatment has been available to those people in England who are deemed suitable.

I called today’s debate to discuss the new proposal by the National Institute for Health and Care Excellence to advise clinicians not to offer Duodopa at any stage. That recommendation is being made despite the scarcity of treatment options and the proven effectiveness of Duodopa. I accept that the Minister has no control over NICE recommendations, but I wish to highlight some anomalies.

First, in clinical practice, Duodopa is used only when all other interventions have been shown to be ineffective, or clinically unsuitable options. Despite that, evidence presented in the draft guideline compares Duodopa to deep brain stimulation, which is another treatment for advanced Parkinson’s, and to the best medical treatment, which for advanced Parkinson’s is often apomorphine.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Gentleman for bringing this matter to Westminster Hall for consideration. I hope that the Minister will be able to respond positively. As a result of the background information that I got in relation to this issue, I would like to ask this question: does he agree that the evidence from clinicians and experts that NICE made a pivotal mistake in comparing Duodopa to treatments such as deep brain stimulation means that the institute needs to step back now and withdraw the proposal before even more anxiety and turmoil is caused to people with Parkinson’s?

[Mr Sharma]

I thank the hon. Gentleman for that intervention. I will come to that point later and respond to it.

That incorrectly assumes that the populations given the treatments are the same, which is not the case, as UK clinicians recommend Duodopa only if their patient cannot have deep brain stimulation or apomorphine. It is therefore illogical to say that deep brain stimulation or apomorphine is better value for money, as they are not suitable for direct comparison. As one person with Parkinson’s explained,

“I was at the end of the road before I had the Duodopa. I was literally wheeled into hospital to have the pump fitted and the Duodopa titrated, and about a week later I came out walking. I responded very quickly and noticed a huge improvement in my quality of life, and I always live in dread that it will be taken away.”

In these circumstances, I very much hope that something can be done to bring NICE to the mainstream view on the subject.

[Glyn Davies (Montgomeryshire) (Con)]

I have been involved for 15 or 20 years in supporting Parkinson’s disease patients or those living with Parkinson’s disease, and I think it is terrific that Members of Parliament initiate debates that raise its profile, raise awareness and ask the Minister to come before us and share views on where we are. I therefore congratulate the hon. Gentleman on securing and introducing the debate.

[Mr Sharma]

I thank the hon. Gentleman very much for his kind words and support.

This issue is of great importance to a relatively small number of people, but given that the treatment is currently available through NHS England, to withdraw it on the basis of an apparently flawed assessment would cause concern among a much wider community, as it might be seen as setting a precedent for decisions on other treatments in future. I would welcome the Minister’s comments on that.

Secondly, although it is well known that Duodopa is more expensive than some other therapies, it is not offered to everyone, and we believe that some of the economic modelling does not take into account the discounts that the manufacturer offers NHS England.

Duodopa was classified by the EU as an orphan treatment, meaning that the number of people for whom it is a suitable treatment is fewer than five in 10,000. There are known issues with using standard health technology assessment methodology to evaluate the efficacy of orphan medications—issues that are thought to place orphan medicines at a disadvantage compared with treatments in more widespread use.

In Scotland, Duodopa was considered by the Scottish Medicines Consortium and approved on the basis of its processes for evaluating orphan treatments. NICE concluded that for Duodopa the cost per quality-adjusted life year—the generic measure of the value for money of medical interventions, based on quality and quantity of life lived—was more than £500,000, but the SMC concluded that the cost was less than £80,000 when using a calculation appropriate for an orphan drug. Indeed, a recent parliamentary question revealed that, from July 2015 to December 2016, just 75 people in England had been given Duodopa.

Thirdly, if Duodopa treatment is denied, that means there will be increased costs from social care and other things on which the person with Parkinson’s will become dependent, to say nothing of the quality of life or dignity of that person, which cannot be so easily reduced to a monetary figure. As Professor David Burn, the national clinical director for the UK Parkinson’s Excellence Network, has commented:

“To not offer Duodopa as a treatment option is putting people with Parkinson’s in England at a disadvantage compared with other developed countries.”

I acknowledge that the Department of Health has no direct control over NICE, and I recognise that NICE needs to be independent of political considerations. However, since NHS England has in recent years determined that Duodopa can be routinely used for patients where appropriate, and both NHS Scotland and the SMC consider the treatment to be appropriate, NICE appears to be out of step with the prevailing opinion. Specifically, I look forward to the Minister’s guidance on what options are open to the Government when the basis of a proposal made by NICE is so flawed. The consequences of these proposals going ahead would be catastrophic for the dozens of people for whom this drug was their last resort, and would add pressure to an already buckling social care system.