It was supposed to be an update about all of the things Adam has been up to over the past fortnight. However, that will now have to wait just a little bit longer, as it appears to have morphed into a rant against the system. If you don't like it when people get on their soapbox you'd best stop reading after paragraph three. Don't say I didn't warn you ...
I have been getting a little impatient over the past week or two, trying to arrange a date for Adam to start treatment in Germany. It's been 150 days now since his stem cell rescue, and the truth is it's starting to make me uneasy. And when I get uneasy I get impatient to do something. If we are going to do this then let's get it done; any cancer cells that are there and that might be destroyed by the antibody therapy aren't going to disappear of their own accord.
We are close to getting a date. We just need to transfer €80,000 into an account at Deutsche Bundesbank, and work out the best way of integrating the immunotherapy with the 13-cis-retinoic acid that Adam is already on. The plan would be for Adam to go out to Germany, have 2 1/2 weeks of immunotherapy out there, return to the UK for 2 weeks of retinoic acid, and then repeat for a total of 5 cycles. After which I am keen for him to continue, toxicity permitting, with retinoic acid until he has completed a full 12 months. In order to minimize the disruption to the retinoic acid schedule the best date to begin treatment in Germany is 1st August. I'm just trying to confirm with our doctors in the UK and Germany whether or not this would be the best course of action - as I'm the one that has suggested it.
There is another dimension to Adam's treatment in Germany that I haven't mention on here before, though I did post on here. Last year, when the first child became ineligible to receive immunotherapy in the UK, it was agreed that the NHS should fund their treatment abroad, in Germany. It was also agreed following a parliamentary debate instigated by Peter Bone, Conservative MP for Wellingborough & Rushden, that all children who could benefit from immunotherapy should have access to it on the NHS. This would necessitate setting up a second study in the UK with wider eligibility criteria; and until such time that the new study was open for enrolment the NHS would continue to fund treatment in Germany. So far, so good.
In reality what has happened is the dark spectre of the postcode lottery has reared its ugly head. Some Primary Care Trusts have agreed to fund the immunotherapy, and others have not. Very recently Dorset PCT rejected an application to fund such treatment; that is until the intervention of the relevant member of parliament, Neil Parish, which resulted in a rather rapid review, and reversal, of the original decision.
NHS Surrey have so far received funding requests on behalf of two children that I am aware of, one of which relates to Adam. They have approved neither. Additionally, I am also aware that Hounslow PCT have refused to fund such treatment as well. And in case you are wondering the newly established cancer drugs fund pays for drugs, not for treatment. It's a fait accompli. This is what NHS Surrey had to say:
After a couple of read throughs it dawned on me that NHS Surrey think they've found something in their rulebook that gives them a way out of paying - "Individual Funding Requests for treatment in clinical trials abroad are not eligible for consideration by the Individual Funding Requests Panel". Well here's news for NHS Surrey, Adam's immunotherapy treatment in Germany is not a formal clinical trial. It might be in the future, but it sure ain't now. So it just might be that they cannot hide behind that particular rule in order to justify not approving the request, or rather not even considering it. Watch this space. If I were a betting man I'd wager the next step will be for them to reject the application because the treatment is 'experimental'. Seriously, that's what will happen; conveniently ignoring the fact that practically all neuroblastoma cancer treatment is experimental.
When Neil Parish raised this subject with Paul Burstow, Minister of State (Care Services) for the Department of Health, in the House of Commons earlier this week, this is (part of) what the Minister had to say:
I am aware that some PCTs have paid for patients who meet the eligibility criteria to go Germany for the treatment. Non-routine treatment abroad will usually be considered in exceptional circumstances and primary care trusts may at their discretion take into account the individual circumstances of the patient and authorise treatment abroad that they do not normally fund. Each case needs to be considered on its merits as issues such as progression, relapse and the use of second-line treatments can all affect an individual’s suitability for treatment, including clinical trials. Each case needs to be discussed carefully with experts in the field.
Unfortunately, as we have sadly come to expect from politicians, this answer is a nothing answer. At best it is inadequate and misinformed. It is certainly comprised of a number of irrelevancies. The truth is progression and relapse is not relevant in the slightest to whether or not funding should be provided. No child who suffers progression or relapse is suitable for ch14.18 + IL2 antibody therapy, no (competent) doctor in the UK would put them forward for it, and the doctors in Germany would in any case immediately withdraw such a child from treatment.
As for each case needing to be discussed carefully with experts in the field I can only say what I know. Of the three children I am aware of who have thus far been refused funding; two are under the care of Dr Peppy Brock's team at Great Ormond Street Hospital, and Adam is under the care of Professor Andy Pearson's team at The Royal Marsden Hospital. Dr Brock is the lead investigator responsible for establishing the second UK immunotherapy trial. Professor Pearson is acknowledged as the UK's leading neuroblastoma expert. If funding requests are being supported by these institutions, and these individuals, I am wondering who the 'experts in the field' are with whom 'each case needs to be discussed carefully'?
I urge the Minister of State to do his homework more thoroughly in future. Or rather not to weasel out of having to take some responsibility and make a decision. Does he agree that children should have this treatment, or not? Ironically his constituency is Sutton & Cheam, just down the road from me and home to The Royal Marsden Hospital in Sutton! He visited the new children's unit last December, and again this March. Having written to the Department of Health on two separate occasions about this in recent months, and now having seen the minutes of this week's debate, I can only conclude he's not really interested in our children.
By the way, you may safely assume at this point that I am annoyed.
The lack of support from NHS Surrey will neither prevent nor delay us from taking Adam to Germany. The Neuroblastoma Alliance (formerly 2Simple Trust) which holds the money from Adam's Appeal will cover the costs. However, at €80,000 per child that is already almost quarter of a million euros of charitable funds that are being used to subsidise something the previous government committed to, and that this government, in theory at least, remains committed to, as they have not announced otherwise.
I had a meeting with our local MP a couple of weeks ago, on the assumption that any funding request for Adam would be turned down. Now it's a matter of letting things take their course and refusing to go away until NHS Surrey either do the right thing, or are made to do the right thing. This isn't why we launched the appeal, and this isn't why we asked people to donate their time, effort and money. Not to pay for treatment that it was agreed in parliament should be either provided, or funded, by the NHS - regardless of which part of the country your child lives in.
There is also a wider issue at stake, and one that makes me the most angry of all. Until such time that the second UK trial is up and running (it was first proposed in spring 2010 and will hopefully open by late 2011, or early 2012) there will inevitably be other children in this situation. Their parents should not have to go through this same fight. That's what was most disappointing for me in Paul Burstow's response in the House of Commons this week. It's bad enough having a child with a cancer that is amongst the most difficult to treat successfully. It's worse that we should have to take our children abroad for long periods because treatments aren't available in the UK, with the effects that has on the family unit, siblings, etc. But to have to become embroiled in a protracted battle to gain funding (that in my mind and others including certain members of parliament has already been agreed and approved) is simply a disgrace. Let's not forget we are talking about a treatment that is potentially curative. Not palliative, but one that could mean the difference between long-term survival and death. How can failing to provide access to that for any child ever be justified?
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