AD: In six percent of the cases, the treatments have some promise but need more research. Our recommendation is that it should be used only as part of a clinical trial. Nine percent are simply not recommended because they show no benefit, and in one percent of the cases, the manufacturers did not make a full submission.
TL: What would happen if you spend more money on ineffective treatments?
AD: It would mean that money isn’t available to spend on other things that are more effective.
TL: Do patients understand that?
AD: It’s difficult for patients on one level to accept that. It’s terribly difficult for people if they think there’s something missing in their treatment. People can become angry and take their case to the media. It’s entirely understandable. People do want their taxes used as wisely as possible by the NHS, but they don’t like the idea of cost being taken into account in their own care. It’s a very human contradiction.
TL: How does the decision-making process work?
AD: We follow a standard process. We gather all the evidence in the public domain and ask the sponsoring company for the results of other unpublished clinical trials, although they are under no legal obligation to provide them. Then all the evidence goes before an independent advisory committee. Industry people are on the committee, and they are joined by economists and statisticians and people who use the NHS, as well as patient advocacy groups and NHS professionals. They look at the evidence and interpret it according to a framework which leads through a standardized decision process. Then they formulate a recommendation.
TL: What happens next?
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.