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the symptoms described are, unfortunately, not uncommon in patients requesting this treatment and are therefore not considered exceptional in that they will be experienced by other patients in the county. We therefore regret that we feel unable to grant funding.
NICE preliminary guidance concludes that Sutent is not cost-effective. However, there was uncertainty whether NICE had taken account of the fact that Pfizer provides the first coursefour weeks of tablets and two weeks offfree of charge. NICE did not factor that into the costing of the drug, because the Department said that it was not sure that it was national, robust or rigorous. However, I believe that Pfizer confirmed that the first month is free to the NHS, so NICE could take account of it when it revises its guidance. Will the Minister assure us that it will? The first month being free to the NHS should be taken into account in the costing. Pfizer has also provided further clinical data. I hope that NICE has a more favourable cost assessment when it revises its judgment and that it recommends the treatment. I asked NICE whether it can speed up the process, because until the guidance is revised, PCTs throughout the country will use the preliminary guidance and probably say no in most cases. I also contacted Pfizer to see whether my constituent can go on a clinical trial or something.
Mr. Derrick told me that it is not the illness that gets him down, but the battlingthe constant lobbying and letter writing, uncertainty and waiting. It would be unfair to say that the people making the decisions are faceless, but they are in the sense that they sit behind closed doors. The problem is that people do not know who is deciding their fate.
Not only is the drug available in most other European countries but it is also more expensive. This is not a case in which a drugs company is making vast profits by charging huge amounts in this country. The drug is cheaper here than elsewhere. Most other European countries pay for it, and some PCTs have approved its being prescribed, but not my constituents. That is the root of the problem.
Let me share with the House a few words from Mr. Derricks daughter. She wrote to me and has given me permission to quote from her letter. As an Opposition MP, I do not have the right to place something in the Library, but I would love to place this letter there because it is so powerful. Her letter is headed:
Robert Derrick, Not Cost Effective.
it all depends on where you live. If you live in one place in Britain it definitely is OK to let you go. If you live in another it certainly is not, and in some, you just need an assertive family and a really good lawyer, and if you dont have them, then oops yes, its OK to let you go too.
The differences dont stop there. If you can prove you are exceptional, then you might be in with a chance of staying alive. But surely we are all exceptional. Its a funny thing. You have to show you are different to everyone else who is the same as you, i.e have this horrible disease. So you cant win.
No, you have to find the energy and the will to fight, do research, hassle doctors, MPs, journalists and anyone else who will listen to you to try and get them to understand that you do count, that it really is immoral and barbaric to let you die like this.
Is it really too much for Dad to expect the best available treatment, one that his neighbours are getting?
I know that it is easy for me to say that Mr. Derrick should just get his drug. The Minister has a fixed budget and has to allocate it. My argument is that if the publics priorities were really getting through in the NHS, they would want Mr. Derrick to have his drugs at the expense of other things the NHS spends its money on. If the public were actively involvedeven locally in Gloucestershireand were asked to list their priorities, I believe that this case would be one. This case is not about localism. I believe in localism and that the health service should respond to local needs. However, this is not about that. Mr. Derricks needs are not different because he lives in Gloucestershire; he would have the same needs wherever he lived. Localism is not relevant in the provision of a treatment because, morally, it should not matter where a person lives. What should we do? I believe that the system is cruel and inhumane because it has the random element of where a person happens to live. The system is not working and it is not what the public wants.
The hon. Member for Bristol, North-West raised the crucial issue of the cost threshold NICE uses to evaluate drugs. It is about £30,000 for a quality-adjusted life year. I know it is not quite as simple as that, but that is the figure that appears in the Sutent judgment. As the hon. Gentleman said, that figure has not kept pace with the costs of the NHS and its medicines since NICE was introduced. If that one change was madeif NICE was asked to adjust that threshold to reflect what has happened since it was createdand the Sutent appraisal was redone in the light of the fact that the first treatment is free and of the latest clinical evidence, that could just make the difference. It would not make a difference for some drugs, but it would for this one.
I understand that the Minister cannot say, Yes, of course, this gentlemen can have this drug. However, this is not a choice between two drugs, one of which is quite good, and one of which is very good, one of which is fairly expensive and one of which is very expensive. It is a choice between treatment that will prolong Mr. Derricks life, perhaps for a good long period, and his death. It is not that there is a treatment that works and a treatment that does not. There is only one effective treatment, and the NHS does not pay for it. That is wrong. The NHS does not pay for the treatment because of where Mr. Derrick lives. If he lived somewhere else, it would pay for it. I ask the Minister to look again at the threshold that NICE is using and objectively assess whether it should be increased because of NHS inflation and drug price inflation, and to let us know how quickly it can be done, to benefit not just my constituent but many others.
Dr. Ian Gibson (Norwich, North) (Lab): It is a pleasure to see you in the Chair, Mrs. Humble. I should like to congratulate my hon. Friend the Member for Bristol, North-West (Dr. Naysmith) on setting us down the track on this important issue and covering lots of ground, which will save us getting into it, because we absolutely agree with him. He has the facts at his fingertips. I can sense a whiff of socialism in the air around this place. It is apparent, if one is in the right wind direction. I am aware, though, that there are hon. Members here who do not like that. On Radio 4 this morning, I heard a Republican denying that what was happening in America had any semblance of socialism. He said that recent events were a little episode that will suddenly disappear and then we will get back to good old strong capitalism again.
We are seeing that in the health service too. Last night, I was with the Minister at a party on the 29th floor of a building not far from Millbank. Many people were talking about the information that patients were getting now, not just through websites and the internet but from individuals. They said that the balance of power was swinging in the health service. Jonathan Miller described it as a revolution. He said we were moving towards a situation in which doctors, GPs and consultants would have to find time to listen to the patient. Sometimes the patient knows what is happening, can understand it and should be put in a position in which they can say clearly, This is having a good effect. They understand that doctors should not be as omnipotent as the system often makes them. That is important. Some of what we are talking about today is part and parcel of that process.
The hon. Member for Bristol, North-West has delimited many of the things that are happening. I have reason to congratulate the Government. A consultant at Guys called me to say that the Government had used a special system, on which the Minister will elaborate, for paroxysmal nocturnal haemoglobinuria. A special commissioning group had decided to extend the system to a group of patients in this country, and various strategic health authorities had come out and said that Eculizumab must be available on the NHS. What a way forward. At last, amazingly, something is happening that will make a difference to peoples lives. I am not talking about millions or even thousands of people, but individuals
and groups of people, who, politically, punch well beyond their weight in numbers. They are not 3,000 beekeepers coming down to make a noise about bees. Those patients might be numbered in fives and tens, but they have a huge influence on the process.
It is not just MPs and Ministers who play a part, but people across the country. That gives confidence to other groups to take similar action. Therefore, people who punch beyond their weight can have an effect. We must ensure that when we implement this system, there are no delays and no postcode lotteries, whereby one place gets the drug and another does not. Those days are past. That nonsense is surely over. After all, NICE was inaugurated to prevent such behaviour. Ever since, there have been problems relating to finance, the way in which people make their judgments, and who is on the committees that make such judgments. One of the issues that my hon. Friend the Member for Bristol, North-West touched on was that the people on the committees are often hidden away and we cannot find out who they are. Some committees are made up of administrators, some have a few clinicians, and others have a large number of clinicians. It is no surprise that there are huge differences across the country and they must be eliminated.
I want to carry on the Sutent argument. For my sins, I have to chair the Rarer Cancers Forum, whose meetings take place in here, in dining rooms and so on, and who are an amazing organisation of people. They are enthusiastic, determined and knowledgeable. They have recently published a well-researched, well-documented report called Taking Exception, which is a must-read for the Health Committee. The way forward is for groups of people to come up with things that are not contained by the rules of this House. Such people come together from different parts of the country and produce new and exciting ideas. We tend to get trammelled by the pathways that operate in this place.
This morning I phoned a friend of mine who has just been given Sutent by NHS Norfolk. His name is David Blackett, and I met him at a football competition at Tasburgh; he was not a bad player in his time. He has kidney cancer. He wanted the drug, and he has been paying for it. He has funded it himself, and it is costing an arm and a leg: the house, the insurance and other things have had to pay for it. On top of that, there is the top-up issuethe Government are holding an inquiry into itwhich means that people who self-fund are not allowed to use other NHS facilities. It creates a huge political dilemma about a two-tier service that must be eliminated quickly.
The issue arises only because decisions are made not to give people the prescription drug Sutent. Why was it given in Davids case? It was partly because of the inquiry being held into the need for top-up fees, but also because his doctor stood up in front of the committee with two pictures, one taken before Sutent and one after, and said, Just look at that cancer. There it is then, and here it is now. There was a huge difference.
Steve Webb: I am fascinated by what the hon. Gentleman says. Is there not a contrast between the PCT that he just described, where doctors can go in and argue the case, and the example that I described, where the proceedings are entirely closed off from the patient?
Dr. Gibson: Absolutely. It is important that the patient should be there, too, to see that he is being well represented by his GP and that they have talked together. David has a friendly GP and consultant who have allowed that. In some places, the consultants word is good enough; in other places it is not, and the administrator must sign the claim form and so on. All sorts of different systems operate. No wonder there is great confusion. I am pleased that doggedness can make it happen, but we must stop this nonsense, as the hon. Member for Northavon says.
Dr. John Pugh (Southport) (LD): Although I warm to the idea of PCTs having to give explanations for their decisions, is it not also the case that some PCTs would simply be out of their depth and unable to make extremely complex decisions on rare conditions?
Dr. Gibson: Absolutely. That is why I started by saying that the Government had created a special commission to represent different PCTs across a region. There is no reason why there could not be an East Anglian regional determination for such matters. Why is it important? It is because of the number of exceptional cases. My hon. Friend the Member for Bristol, North-West has already quoted the numbers, but of maybe 5,000 cases a year, only 800 are refused. One wonders whether some of those refusals come about because of some doggedness in a PCT or in individuals, or whether the wrong people are involved and so on. The numbers are not astronomical, but let us say that those 800 all paid top-up fees. I am sure that good administration and good judgments about how the system operates and who is involved could greatly reduce that number until it became fairly trivial.
Dr. Naysmith: My hon. Friend is making a good case, but the PCT special committees called to consider exceptional cases used to vary greatly. A member of the trust would be brought in who happened to be in the office that day, and two or three of them would sit around and make a decision. Then, the next time a decision had to be made, different people would make it. It has been recommended that that should change, and it has changed in Bristol PCT, although I do not yet know about South Gloucestershire PCT. It is important to have much more continuity if we are to get standard and reproducible decisions.
Dr. Gibson: It is true that that is improving in places, but by gosh, people have to fight to make it happen. Some lawyers are active in that field. I will not name them, but they have attended debates here and hammered away at MPs. They do not do it for profit; they just take the case and fight it, and it has been hard. One of them just wrote to me. He congratulated the Government and told me what was happening in ScotlandI will leave that outbut he had just heard that
Hampshire PCT now refuse to allow any patient involvement in their whole decision and appeal making process...in Manchester one PCT insists on a signature from a trust manager in any application before it is considered and the consultant application route is not enough.
There are still major differences. It is not rocket science; it is just about equality. There are terrible inequalities in how assessments are made that would easily be eliminated by a bit of action from Government or strategic health authorities.
We talk too much about drugs. In my socialist mood, I would nationalise the drug industry. Everybody laughs when I say that, but at every union and Labour party conference in the 1970s, one had to say that or get booed, and anyone who said it would be cheered to the echo. If we are nationalising banks, why do we not start thinking about nationalising other things? But that is enough heresy in this place for one morning. We do not hear much of it, but it is a thought. Drug companies are merging anyway, and if they do not get their evil way, they get the hump and threaten to go to Ireland, Europe and so on. The first drug NICE ever considered was made by SmithKline Beecham, as I think it was called at the time, which threatened to go to Europe if it did not get its evil way. There are all sorts of political pressures like that, and in cases such as the ones that we are discussing, the drug companies have some questions to answer.
I think that the next few yearsthe next few weeks, evenwill be quite exciting. It is high time that things happened. Many of our constituents are wary of the process because they do not understand it, and it is our job to ensure that it is simple. Many things could be said about the issue. It is not just about cancer; it is about technologies becoming available. People can do things such as blood sampling, treatment for diabetes and so on at home. Those technologies need to be assessed, and I accuse NICE of not taking other technologies as seriously as it takes drugs. An inquiry is probably needed; the Health Committee may have something to say about it. We may need a separate arm of NICE to push along other technologies such as stents for heart problems. An exhibition is held here every year, although hardly any MP goes to it, of all the new, modern gizmos that allow people to assess their own health, take measurements, save GP time and so on. It is an exciting time and NICE is at the hub of it, but it must get its act together quickly or socialism may come into it.
Dr. Richard Taylor (Wyre Forest) (Ind): It is very nice to be under your chairmanship, Mrs. Humble, and it is good to see in the hot seat two hon. Members with considerable experience of the NHS from their careers as nurses. I am pleased to see them. I welcome this debate and the introduction given by my friend from the Health Committee, the hon. Member for Bristol, North-West (Dr. Naysmith). It is crucial at this time.
So many different definitions of rare diseases are used, but I think that the easiest is that a rare disease is one that a busy GP would not see more than once a year. A lot of work has been done in Europe by the rare disease task force, which has chosen the most ironic day to be rare disease day in Europe: 29 February. As to the availability of treatment, I commend the Government for following up the Carter review and creating the regional specialised commissioning groups and national specialised commissioning groups, which will make a huge difference. A word about the national commissioning group: its website gives a list of the illnesses and groups of illnesses covered, but there are just 38. I do not think that that can be complete.
We have heard about paroxysmal nocturnal haemoglobinuria, and I commend the Government for allowing treatment for that condition. I looked in my Merck Manual, the bible for those who, like me, are out
of touch with medicine. My 2006 edition dismissed treatment for PNH as being only supportive. However, I received a letter from a constituent of mine with that very rare disease. He is 45 years old with a wife and three children under 16. In 2000 he lost his job when the disease was diagnosed and for a long time was out of work and receiving disability living allowance and incapacity benefits. He also had to have blood transfusions every three months, despite which he was extremely ill. He heard of a team in Leeds working with Alexiona drugs company in the United Statesand went up there fortnightly. For four years he has been taking Eculizumab and has not required a single blood transfusion. Furthermore, the treatment has been free, because it is part of a phase 3 clinical trial. He is now off the disabled register and back in part-time work. He would have been devastated if he could not have had the treatment, which is to be introduced on 1 April. Will arrangements be made for those such as my constituent to receive the supply that they need up until that time?
That brings me on to NICE and other points raised by other hon. Members. Eculizumab seems to have bypassed NICE. It is absolutely right that it has been approved, and I suppose that it could not be examined by NICE because the condition is so rare that there is not enough evidence and are no comparative trials. That makes it very difficult. However, that means that, if things that are examined by NICE are turned down, they have a desperately unfair status. We have heard already from the hon. Members for Northavon (Steve Webb) and for Norwich, North (Dr. Gibson) about Sunitinib. I have seen three patients whom I thought were exceptional casesthe first two, in Worcestershire, were described as not exceptional just like in Gloucestershire, and it was suggested that there was no point in referring any more similar cases because they would not be exceptional either. Then I saw a patient whom I thought was definitely exceptional: a 36-year-old lady with young children to whom even an extra few months of life would make all the difference, but again she was not counted as an exceptional case.
Rare cancers are covered by specialist commissioning groups and will probably get funded, so why could they not take on people with common cancers who appear to have rare social conditions and the need for a rare drug? In those cases, some fairness could be introduced into the system, because Sunitinib, as we have heard, is funded in several parts of the country, but not in others. I would very much like there to be other ways of treating such non-exceptional cases of relatively common cancers, but where the patient is in truly exceptional circumstances.
Not very much has been said about research into rare diseases, which of course is desperately important. I shall always remember a John West cartoon of a very worried lady talking to her husband in a hospital bed saying: The doctor says its so rare that they cannot be bothered to find a cure. Sadly, that is rather near the truth. I remember a particular Health Committee report that found that drug companies at the time were investing £3.3 billion a year in drug-related research, which was many times the figure invested by the Department of Health, the Medical Research Council and medical charities combined. We are dependent on the pharmaceutical industry for research into drug treatment, but inevitably, owing to the costs of new drugs, the industry must consider drugs that will produce a return.
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