Sunday, 30 November 2008

Ban on Kidney Cancer drugs lifted !!!

A ban on drugs that can give kidney cancer patients many months of extra life is to be lifted. At least two, and possibly all four, of the medicines that had previously been deemed too expensive to prescribe will be approved by the National Institute for Health and Clinical Excellence (Nice) early next year.
The move is a major victory for campaigners, patients and cancer specialists. They had described Nice's refusal to approve the drugs - which cost up to £70,000 a year per patient - as unfair, inhumane and condemning patients to an unnecessarily early death.
Oncologists believe Sutent, Nexavar, Avastin and Torisel could benefit about half of the 7,000 people a year who are diagnosed with kidney cancer. No other drugs are as effective at extending life in patients with advanced forms of the disease or in whom cancer has returned after a period of remission.
In August, medicines watchdog Nice refused to approve the drugs because they did not represent good value for money. But sources at Nice now say that Sutent will be given the green light when its appraisal committee holds its final meeting to discuss the drugs on 14 January. At least one more drug - likely to be Avastin or Nexavar - will also be approved, the sources added.
The move follows Health Secretary Alan Johnson's decision this month to overhaul the way new medicines are assessed for terminally ill patients. Denying cancer patients access to drugs that are widely available abroad has become a major political issue.
Nice immediately promised to be more flexible when examining the merits of such drugs, even if they were so costly they failed to meet its appraisal criteria.

Ban on kidney cancer drugs lifted Science The Observer

I dont know what to say really - Im completely overwhelmed and SO relieved, I was actually in tears when I read the news.

Thank you everyone who signed petitions, wrote to their MP's and gave such wonderful support during the past 4 months to our campaign.

Thursday, 27 November 2008

Where's the loo ??

I was kind of hoping, expecting, to have an easy time this cycle. Im not sure why, maybe because I thought it would be only fair after last month. But yet again I have been plagued with diarrhoea. No matter how many loperamides I take I still find myself rushing to the loo, buttocks clenched, at least 6 times a day. Anyone who is unlucky enough to find themselves in my way on one of these sprints gets shoulder barged to the ground - Im expecting to be signed up by the All Blacks any day now ! And Im sure I should qualify for shares in Andrex !
That aside the only real problem I have right now is fatigue - and ofcourse that could be due in part to constantly being on the toilet. But this hasnt really stopped me from doing things. As long as I make sure there is a loo within sprinting distance.

On Wednesday I went to a preliminary meeting for the TeleHealth initiative - and came away with a bundle of reading material. The pilot scheme doesnt actually start until January so I have a few weeks to work my way through it - good job really because its full of 'NHS speak'.

Tomorrow it is the annual kidney cancer conference which is being held in Birmingham, so for once I dont have to travel very far. Dr. P is speaking on the care of kidney cancer patients as is a CNS on the side effects of Sutent - which could prove interesting for me, maybe Ill find another way of dealing with my 'running to the loo' syndrome.

Hmmmm......I do hope they have a loo just outside the conference hall !

Wednesday, 19 November 2008

NICE Board Meeting - Stoke - 19/11/2008

Catherine and I arrived nice and early for the meeting today - despite getting lost and ending up in Newcastle ('under Lyme' fortunately and not 'on Tyne') We met up with Kay, her son, daughter-in-law and husband and another kidney cancer patient, Julie, who had come to offer her support. A reporter and photographer from The Sentinel, a local Stoke newspaper, was there too.

The meeting kicked off with an introduction on how the drugs appraisal process works - from the first evidence based decisions to the consultation process. As we all know in the past this entire process has left a lot to be desired, with some drugs waiting for over a year to be appraised and approved - or not. This is how the 'post code lottery' occurs. Without published guidance from NICE it is up to each individual PCT whether they fund these drugs or not. This should all change now however. From now on the appraisal of drugs will start before a licence has been approved so the appalling situation of the post code lottery should never happen again. This doesnt ofcourse help patients like Kay who are left waiting until January because of the callous decision of their PCT.

The question and answer session was fairly lively with quite a few topics being covered but I managed to get my question in which was in reference to the news today about the governments deal with the pharmaceutical companies and the supplementary advice NICE are proposing for end of life drugs. It was a bit early to expect any considered reaction to todays news, after all it had only been released at 9.30am, and as far as end of life drugs are concerned there has to be a period of public consultation and 5 weeks is the bare minimum. The end of life medicines appraisal was covered comprehensively in the board meeting.

Kay made a very moving speech questioning why other patients were taking Sutent and yet she wasnt allowed the chance. There was much sympathy from the board for her but they reiterated that it was a PCT decision at the moment so really our anger should be directed at North Staffs PCT. As far as Sutent is concerned new evidence has been submitted by the pharmaceutical company so this, along with other evidence that has been submitted by both oncologists and patients, gives us good grounds to be hopeful I feel.

Kay and her family left at the end of this session - no nearer to getting the Sutent she so desperately needs.

I stayed on for the board meeting as I really wanted to hear all about the appraisal of the end of life medicines. NICE intend to issue supplementary advice on these drugs which are used in cases of 'rarer cancers' - which must fit the following criteria......
Used for less than 7000 patients per year.
Used for a terminal illness where the life expectancy is, on average, less than 24 months.
Evidence this medicine offers a substantial extension to life compared to current NHS treatment.
The cost of this medicine exceeds the upper range normally considered - £30,000 per year.

Now to me the above describes Sutent perfectly - and most probably the other kidney cancer drugs under review at the moment. This is where I think our best hope lies. NICE are keen to implement this advice - they have only asked for a very short consultation period, ending in January too.
Ofcourse this advice will apply to other cancer drugs too, not just kidney cancer, so it is probably the most important appraisal on the table right now.

I have to admit I left with a grudging respect for NICE - in fact I thanked the chairman personally for his work on the end of life medicines. They are, at last, trying to do the right thing and no longer seem obsessed with the cost of everything. Its a shame it has taken this long. Lives have been lost, literally, waiting for this mess to be sorted out.

Tuesday, 18 November 2008

Whenever I see a picture of me and my family together I always feel so short - which is quite an achievement when you realise Im 5ft 10 !

This picture was taken at Carolines party and shows just how well I look (and slightly tipsy!) at the moment.

I dont normally interact with other blogs on here, mainly because mine is about all things 'kidney cancer', but Im going to make an exception this time
2 bloggers, Yasmin and Lyn, have been kind enough to nominate me for a 'Marie Antoinette' award - which is for 'Real blogs for Real people' Im constantly amazed that anyone actually wants to read my witterings let alone give me an award ! Thank you both of you, Im really touched and when Ive had a hard think I shall pass it on.

Today, with Catherine, I am driving up to Stoke to attend another NICE question and answer session and board meeting. Im going primarily to support another patient, Kay Hopkins, in her fight to secure funding from her PCT (Stoke) for Sutent. Kay has had a dreadful battle with this particular PCT - they have even denied her the right of appeal.

Some good news on the horizon this morning - the Government have announced a new deal with pharmacutical companies which will reduce the NHS drug bill by over 400 million pounds a year. It will also reduce the cost of new and expensive cancer drugs. This, combined with the new advice NICE are to impliment in Janurary in regard to end of life drugs, SURELY will mean the end of the post code lottery for kidney cancer patients?

I shall ask the NICE board that very question

Sunday, 16 November 2008

Making a difference

A couple of months ago I was invited to take part in an 'Expert Patients Course' at my GP's surgery. The title is a bit of a misnomer really as its designed and aimed at patients with a long term chronic health condition such as diabetes or arthritis and the idea is to help them self manage their condition. However I found it very useful and informative.

The course lasted for 6 weeks and at the end of it I was invited onto the committee of the Patients Health Forum for my PCT. I accepted immediately for two reasons. firstly I think it will be another stage for me to 'bang my drum' about RCC drugs and secondly because it will be a way of keeping a finger on the pulse of what is happening in the NHS.

I was certainly right in the second instance. At the first meeting I attended I was invited onto the board of the PCT's 'TeleHealth' new initiative. The general idea of this is that patients with conditions which require regular monitoring - blood sugar readings, peak flows etc - will be able to do their own readings at home, or have a district nurse do them, and the results then sent by a dedicated phone or computer line for assessment at the surgery or hospital. Which sounds like a good idea doesnt it? However, we still have to see how this will work out in practice.

So I may not be able to work any more, and I do miss it when Im feeling well, but by involving myself as a patient in these working groups and committees I may be able to make a difference in some small way. Plus Im meeting a lot of nice people and making new friends. And who knows where this may lead ? Minister for Health next ! ha ha !

Saturday, 15 November 2008

Cycle 8 !

The clinic was eerily quiet on Thursday when I went for my 6 weekly check up. Usually it is packed with standing room only and running at least an hour behind time. But this morning there was only me and a couple of 'prostates'.

I know they were 'prostates' because, unusually for men, they were chatting away together about their condition and treatment. Men are generally pretty reluctant to talk about anything to do with their 'bits' (unless its to boast about the size) but these 2 chaps treated me to a full description of both the operation they had and the examinations required. This made me smile. Especially as their wives were joining in with much gusto !

When the clinic is quiet I always wonder why. What has happened? Where is everybody? I get used to seeing the same faces week after week so its noticable when one disappears - have they got better? or have they succumbed?

Dr P was busy with a poorly patient so yet again I was called in to see his registrar. I always think its a good sign when you are 'demoted' to see the registrar - and yet again it was. Everything is fine. My blood results, surprisingly, are still normal. I say surprisingly because I have been on the highest dose of Sutent for over 8 months now and it is, after all, a toxic drug.

We had a quick chat about how I was feeling, which is great at the moment, and about how I feel at the end of each cycle, which is pretty grotty. The answer to this would be to reduce the dose I am taking but to take it continuously, so I am getting the same amount of Sutent but evened out over the cycle. Which sounds like a great idea to me. However, she wasnt prepared to make that decision until I have had my next CT scan which is due in the beginning of Janurary and discussed it with Dr P. So all in all another positive and very encouraging visit for me.

Today is Carolines 50th birthday - a day I thought I would never see. And tonight she is having a big party. And I will be there. How fantastic is that?

Friday, 7 November 2008


NICE sets out its own proposal to increase drug access 04 November 2008

The UK’s health watchdog has announced a new proposal that will see some life-extending drugs being made available to patients, when in the past they would not have been. The independent announcement by the National Institute for Health and Clinical Excellence coincides with Professor Mike Richards top-up review and comes almost a fortnight after NHS officials called on MPs for a debate on the value of life-extending medicines.
The NICE proposal will plan to see changes to its technology appraisal process whereby NICE will provide additional evidence to its Appraisal Committees for drugs that may have a clinical benefit but are not normally deemed cost-effective. “The Institute is aware that patients, and the public, place considerable value on treatments that offer the possibility of extending life when we are close to death,” said Andrew Dillon, NICE Chief Executive. “We believe that we should reflect that view when we are asked to make recommendations on the use of medicines that are designed to extend life, at the end of life. The new advice we are giving to our Appraisal Committees will help them to take account of this and will better enable them to decide when to recommend the use of life extending treatments.”
To be considered under this supplementary advice, a medicine would need to: be licensed for treating a patient population of less than 7,000 new patients each year; be indicated for the treatment of patients with a terminal illness who are not expected to live for more than 24 months; have sufficient evidence to indicate that it offers a substantial average extension to life compared to current treatment; have been accessed by NICE as having an incremental cost-effectiveness ratio in excess of the upper end on the range (£30,000) normally considered by NICE’s Appraisal Committees to represent a cost effective use of NHS resources; and that no alternative treatment with comparable benefits should be available through the NHS.In addition, and subject to agreement with the Department of Health, medicines recommended for use on the basis of the above criteria would be subject to an appropriately designed programme of evidence development to ensure that the anticipated survival gains are evident when used in routine practice. Dillon said the Institute had been considering for some time how to approach decisions on life extending medicines, particularly those that were expensive and for rare conditions, and “we decided to make out contribution to finding a solution to the issue of co-payments” in conjunction with the top-up review. The exact specifics of the proposal are still being worked out and are the subject of a five-week public consultation.The Institute plans to apply the supplementary advice at the next Appraisal Committee meeting in January.

Isnt this fantastic news?
Although I dont understand why we have to wait until Janurary - why cant they apply this advice right now?


Tuesday, 4 November 2008

Allo Allo !!

On Friday morning we left a bright sunny, but chilly, Birmingham Airport and landed an hour and a half later in the south of France in the middle of a torrential downpour.


Actually I say and hour and a half later but it was much longer than that. This was due to the fact that Ryanair have obviously lowered their employment standards to the level by where their staff are unable to count. For over an hour we sat on the runway whilst one after another of the crew counted us. Over and over again. And then checked us off against the passenger manifest. And then counted us again. Eventually they decided on a number which was roughly the same and we were allowed to take off.

Biarritz airport is tiny and really cute and it took us no time at all to walk through it and find the bus stop which would take us into town a few miles away. Except it didnt. The bus I mean. It dropped us on the edge of town which meant a good 20 minute walk for us, in the rain, to find our hotel. When we did find it, just a short distance from the sea and shops, it was lovely. Very new and modern and minimalist, not at all what I was expecting. Our room was beautiful with a flat screen TV, wet room and very comfortable beds. Which is a good job because due to certain unforseen circumstances we spent an awful lot of time in there.

We set off to explore and find dinner after borrowing an umberella - it was still raining - and found a typical French bar not far away. We had barely put the umberella down when we heard "Hello you two - you found your hotel then?" It was another couple from the plane, staying at the same hotel as us, but being wimps (or wise as I call it) had taken a taxi rather than the bus. We had a couple of drinks and as they were friendly Black Country types within half an hour we knew their life story. We spent a very nice evening in their company eating a not altogether typically French meal and then running back to the hotel in the rain which was even heavier by then.

The next morning the sky was blue, not a cloud on the horizon - a gorgeous day - so after breakfast we set off for the beach. The surf was pumping and despite there being a chilly wind it really was beautiful. Although I have to admit it was hard to recognize the 'Biarritz' we remembered from 29 years ago. Its very upmarket now, and very expensive with beer being £5 a pint and the shops being of the designer variety.

We wandered round to the old harbour and had lunch, very typically French this time. Martin had Moules and frites and I had fish soup - or at least I ate the soup but left the fish part of it. For a couple of days I hadnt been feeling 100% - I was in the 4th week of Sutent and the side effects were pretty bad - and by now I was feeling really unwell. So we returned to the hotel where I slept for most of the afternoon.

The next morning, Sunday, I felt just as bad. I had been up most of the night running to the loo and was absolutely exhausted. The rain had returned and it had become much colder and for some reason I really felt it. Even with 5 layers on I was chilled to the bone.

There isnt much to do in a wet, cold Biarritz on a Sunday so we went to the Sea Museum - which took about 15 minutes to walk around. It was worth the 7 Euros entrance fee though just to get out of the rain. After it was all I could do to stagger back to the hotel where Martin tucked me up in bed - I went to sleep and he watched the telly. I didnt feel much better that evening so we ate at a Crepe restaurant (cue Martins 'crepe' jokes) just around the corner from the hotel. It was really sweet inside, like eating in someones living room, but I really wasnt hungry and just picked at my dinner.

Monday was more of the same Im afraid - horrible weather and me feeling really ill. We ventured out for an hour to buy the kids some chocolate cakes but I was soon back in bed shivering. Since I had IL2 I seem to feel the cold much more, and it takes me ages to warm up. This cycle of Sutent has been pretty 'challenging' (as Dr P would say) and Im so glad its finished now.

All in all it was a nice break, despite my feeling so unwell.

And Martin got to watch all of the New York Marathon and the Grand Prix while I snored next to him !