AD: The recommendation goes public for consultation. Recommendations then go back to the committee to see if there’s new evidence or argument that changes their minds. Sometimes they make a change that can be quite fundamental. A revised recommendation then goes to the manufacturer, professional and patient groups, and the representative NHS agencies which can appeal on three grounds: the recommendation can’t be justified; we failed to follow the process; or we’ve exceeded our powers.
TL: How many times have your final recommendations been challenged?
AD: Between 35 and 40 percent of our final drafts have been challenged.
TL: And how many times did you change your mind?
AD: Between 2000 and 20009, 17 out of 170 appraisals have been returned to the Appraisal Committee for review.
TL: Are people in the UK dying because NICE is depriving them of state-of-the-art drugs?
AD: With some conditions like end-stage cancer, some people are facing death in a very short time. Some treatments we look at offer an extension to life in these circumstances. We almost always support the use of these treatments. In the small number of cases when we don’t, it’s because the case for use against current standard care isn’t convincing, or the cost is inordinately high.
TL: In the U.S., sellers of new technology can sometimes succeed in getting coverage decisions made by Medicare reversed by running to Congress. Do sellers go to members of Parliament and ask them to reverse unfavorable decisions?
AD: Neither the government nor elected representatives can tell NICE what to recommend. And they don’t try, either.
TL: Why is that?
AD: Because they all know that if patients or health professionals thought that our recommendations were being influenced by political considerations, they would ignore them. The government values NICE because of the independence and objectivity it brings to NHS decision-making.
TL: What advice can you give American journalists covering this emotionally charged subject?
AD: To remember that, in Britain, people like the idea that we all contribute into a big fund from which we can all benefit. We accept that some people won’t be able to contribute very much. Perhaps they are out of work; perhaps they don’t earn very much, so they pay little in the way of taxes. That matters less than the feeling that a mark of a civilized society is the way its members care about each other.
TL: Is there anything else that you can advise?
AD: For all the differences that are apparent, there’s one universal reality that affects every system. There is never enough money for everything, and choices have to be made. Reporters need to be clear about what choices are made, and be honest about what is happening and why it’s happening. A degree of honesty about what’s possible and what’s not is important in getting behind the stories that are so compelling. It’s really hard to get behind those arguments about the pain, disappointments, and fear. Sometimes reporters need to be honest and say there isn’t much benefit from this drug or that one.