It has been a busy 24 hours in medical research.
Beginning with the sunnier side of things, I am sure few of you will have esacaped the wall-to-wall coverage of the study published yesterday showing Vitamin D exerts an influence over certain genes associated with diseases like multiple sclerosis and arthritis. The research is notable for its international collaborative nature involving a range of funders including the Wellcome Trust, MS Society and Action Medical Research from the charity sector alone. Now, if only they could do something about the weather.
But the coverage for this paled in comparison to that which greeted the decision of US federal court judge, Judge Royce Lamberth, blocking federal funding of human embryonic stem cell research over there. The Washington Post and others are reporting today that President Obama is likely to appeal. The Post also had something on its wires this morning saying that the Senate Health Committee is going to hold hearings over the next few weeks. Its Democrat Chair, Tom Harkin, has come out very strongly against the judge’s decision. And so, in one fell swoop the issue has become very, very political. I notice that in USA Today and other publications, those supporting the judge’s decision are pushing for Congress to make the ultimate decision. And no wonder, with the Democrats likely to lose out in forthcoming elections.
Moving on…there was an excellent piece on BBC Newsnight yesterday picking up on the Muscular Dystrophy Campaign’s (an AMRC member) State of the Nation report saying that the move to GP commissioning under the NHS White Paper reforms will be disastrous particularly for those with complex and highly specialised needs. Jane Field, mother of 12-year old Daniel, talked calmly (and in statements all the more powerful because of their reasoned tone) about the current problems with misdiagnosis and getting specialist help.
I am prone to policy hypochondria at the best of times. But, in talking with our members, my instinctive sense has now hardened into a firm view that the White Paper does not pay enough attention to, nor incentivise strongly enough, medical research. GPs are just not research-minded to put it midly as will be shown by the results of focus group work we have done withGPs and patients and which I hope to post before not too long.
But back to Newsnight… I was particularly struck by the GP on Newsnight yesterday who said there will be winners and losers in the new system. And there was me thinking that I went to my doctor to be treated fairly not to enter a lottery.
Talking of lotteries, yesterday also saw the bowel cancer charities come out in force to express their dismay that NICE had decided not to approve the treatment, bevacizumab – a decision which it has opened to public consultation. I always feel a heretic when I say that the world is far better with NICE than it was before, but then I can recall the days in the early nineties when we had no real transparent decision-making process for evaluating medicines or in determining if and how they were available. Nonetheless, the mismatch between such decisions on the grounds of cost versus patient need and experience are hard to bear.
I continue to feel that there is much work to still to be done to ensure ever-better tools are being used (such as patient reported outcome measures (PROM) to measure the patient experience and ensure they are part of the decision-making process but also to think holistically about the wider costs saved to society by access to treatments. This is an issue that continues to hover for members of AMRC and I suspect it will gain further momentum as NICE assumed a greater role in the new NHS set-up for defining quality outcomes and influencing the research agenda. We pay too little attention to perhaps the biggest translation gap in producing medicines – both how it gets taken-up by the NHS and then the degree to which patients will not adhere to their medicines rgeime. I am looking forward to discussing these points when I meet with the head of NICE, Mike Rawlins, in September.
And finally, some of you may be interested in William Cullerne Bowne’s recent post flagging up Vince Cable’s first speech on science which will take place on 8th September…