Excluded Voices

An interview with British health official Andrew Dillon

This past year’s health discussion has been remarkable for the narrow range of ideas and opinions that have floated down to the man on the street. Journalists have sought out the same organizations and sources for their stories, offering up what has become the conventional wisdom for reform. To bring more voices into the conversation, our Excluded Voices series will intermittently feature health care experts who aren’t on the media’s A-list of sources. This is the seventh entry in the series, which is archived here. We want to offer journalists more options for their stories and encourage a deeper conversation. To that end, we’ve asked the experts featured in each post to respond to questions from Campaign Desk readers.

Since 1948, when President Harry Truman tried to bring national health insurance to the U.S., doctors and others with a vested interest in protecting their pocketbooks have railed against British-style “socialized medicine.” Over the decades they’ve managed to convince men (and women) on the street that people are dying in England because the government “rations” care. The “R” word became a staple in America’s health care vocabulary. Myths die hard, as my CJR colleague Greg Marx has pointed out. Even students who were born forty years after Truman’s presidency know about the “evils” of British medicine.

Earlier in this round of reform, it seemed that the socialized medicine bogeyman had been buried in the North Atlantic. Once it was established that Republican presidential candidate Rudy Guiliani got his stats all wrong when he tried to demonize British health care, not too much was said about socialized medicine. That is, until now.

Opponents ranging from members of Congress to conservative writers have again revived the bogeyman. Iowa Sen. Charles Grassley told the News Hour’s Judy Woodruff that a public plan was “one step towards a government takeover of our health care system, and I’m not going to go along with anything that rations health care.” When Woodruff said that U.S. insurers already determine which treatments people get, Grassley replied: “If you don’t like the insurance company you have, you can go get another insurance company. You’re not stuck like they are in England.” That would be news to thousands of workers whose employers offer only one option and truly are stuck, or to British citizens who can buy private insurance (a point Grassley later made).

The conservative Club for Growth, which stands for limited government, lower taxes, and less government spending, launched a $1.2 million ad campaign in early August attacking the British system. The ad, which the St. Petersburg Times’s Truth-O-Meter called “misleading,” features a man weeping over someone lying in a hospital bed. An announcer says: “$22,750. In England, government health officials decided that’s how much six months of life is worth.” Apparently the Club is so proud of the ad that its Web site boasts that it has put “Britain’s health service on the defensive.”

What conservative politicians and groups like the Club for Growth are really attacking is the possibility that health reform might create an outcomes research institute that would help doctors make informed decisions about treatments based on scientific evidence. Such an agency would also identify national priorities for comparative clinical effectiveness research—finding out what really works, and whether it’s worthwhile to pay for it. That’s exactly what drug companies, bio-tech firms, and technology sellers don’t want—-they might make less money and will have to work harder for the money they do get.

In late June, I conducted two extensive interviews with Andrew Dillon, who heads Britain’s National Institute for Health and Clinical Excellence (NICE), which seems to be the object of these conservative attacks. NICE, part of the British National Health Service (NHS), advises health professionals, the public, and public officials about the best way to approach medical treatments. Any U.S. outcomes research institute is likely to be patterned on NICE and similar organizations in other countries.

Trudy Lieberman: How did NICE come about?

Andrew Dillon: In the late 1990s, there was broad support among health professionals within the NHS for a national resource to help the NHS make consistent, evidence-based decisions on the best approach to using new and existing treatments. Although [British] doctors are as independently minded as others in the world, there has been a long tradition in British medicine to use evidence. So there was a recognition that an agency that would help professionals strive for a good standard in treating patients was a worthwhile idea. Most professionals here are trained in a system that works on a fixed budget that has expanded rapidly over the last six or seven years, but still everyone knows there are limits to what can be spent.

TL: What else did professionals want such an agency to do?

AD: Provide objective, but above all independent (from the government) advice on optimal approaches to clinical and public health practice.

TL: We have great variability in treatment practices across the U.S. Was that a concern in the UK?

AD: Variability existed and still does, but to a lesser extent, in the British system too. All NHS services are delivered locally, and doctors make their own decisions about treatment options. In the 1990s, many professionals, patients, and the media were conscious that there were differences in the availability of treatments across the country. It was variability that was another incentive to set up an agency that would give a national determination or a reference for treatment.

TL: Has it worked?

AD: Certainly it has. There is less variation now that there is a national reference on optimal approaches to care.

TL: Must doctors follow your guidance in making decisions about their patients’ care?

AD: No, but they generally take our recommendations into account. There’s no legal requirement that they follow the guidance. And we can’t instruct them to do anything. All professionals want to do the right thing for their patients. In Britain, doctors and others know that when they commit resources for a patient’s treatment, the money comes out of a national fund to which everyone contributes and which benefits all UK citizens (and overseas visitors who rquire emergency care.) So they are conscious of the need to make the best of the money that is available. They know that our recommendations are designed to ensure that everyone gets the best deal out of the money the NHS has. They respect them and use them in that context.

TL: Then how do you get them to comply?

AD: We rely on the collective responsibility of everyone who works in the NHS to do the best with the resources that are available. Doctors are conscious there are limits on what the country can spend on health care. There’s a finite amount of money. If there’s no benefit from a treatment for some patients, doctors know that money should be spent where there is benefit. If money is not spent on things that don’t work, that means there’s more money to spend for other patients—or perhaps the same patient who needs treatments that will be more effective.

TL: What does the word rationing mean in this context?

AD: Rationing often brings to mind the austerity and hardship experienced by people in Britain during the Second World War, when everyone got the same amount of food or clothing regardless of need. NICE does not allocate a fixed amount of health care blindly. We look at what people need and what’s available to treat them. Then we help patients and those who care for them make their choices within the overall envelope of money available. We rarely say that something has so little value or is so expensive relative to what it offers that it’s not a good use of NHS resources.

TL: Do all health systems make choices?

AD: Yes. No country can afford to fund anything and everything every citizen might feel they should have. All countries place limits on what is made available. Governments do, employers do, insurers do too. Most countries make sure their citizens have choices. People in Britain can decide to use the NHS, or they can take out private insurance. But most people who have private insurance also use the NHS.

TL: For decades, Americans have heard that there are long waiting lists for procedures. But hasn’t that changed in recent years?

AD: The NHS used to have long waiting times for elective surgery. With recent investment, people can more or less choose when they have their care. You can see a family doctor for routine care within twenty-four hours, and most non-emergency hospital care can be organized within a matter of weeks. Of course, all emergency care is both completely free and available on demand.

TL: How has that changed?

AD: The NHS has received significant additional funding. It has increased from around 60 billion pounds to around 90 billion over the last seven years. It is also better organized and better equipped.

TL: How much private insurance is there?

AD: About 12 to 15 percent of the population has some private health insurance. The number is going down because waiting lists are being eliminated.

TL: In other words, your government realized there was a problem and corrected it, is that fair to say?

AD: Yes, the NHS needed more money to provide the standard of care that people see available in other countries. It needed to fix the waiting list problem, and it needed more professional staff.

TL: Conservative groups in the U.S. allege that the NHS puts a price tag on a person’s life, at $22,750. Is that true?

AD: Treatments are recommended if the benefits to patients are worth what the NHS is asked to pay by the manufacturers of the intervention. There is a limit on what the NHS has available to spend overall, but we don’t put a limit on the amount the NHS can spend on an individual. People get confused by the ratio—pounds per quality adjusted life year (QALY)—that we use to assess value for money. The QALY puts into money terms the value of health care that can be funded by the NHS, that’s being used up by agreeing to introduce a new, more expensive treatment. It is not a maximum budget for an individual patient. For example, some could cost a few pence a day but offer so little value that they aren’t worth buying. Something else could cost many tens of thousands of pounds a year for each patient but be so effective that it makes sense to make it available.

TL: What is the most controversial decision you have made?

AD: There are two—drugs for Alzheimer’s disease and drugs for end-stage renal cancer. In the case of Alzheimer’s disease, our initial stance was to reverse an earlier recommendation. However, after hearing arguments from the manufacturers, patients, and professionals, the decision we eventually made was to recommend its use in the moderate stage of the disease. That’s where the evidence told us it had its effect. Many people criticized us and said our decision meant that people had to deteriorate before they could get treated. But the sad truth is that people living with Alzheimer’s will inevitably deteriorate whether or not they are given drug treatment. We felt that it was more honest to treat when there’s a chance of an effect than to treat when there is little or no chance of a worthwhile effect.

It was a very hard argument to get across, and it outraged the clinical community. We were accused of actually causing patients to deteriorate when they would otherwise not. In offering treatment you have to be confident the drug will provide a reasonable amount of benefit, or you are generating false hope. We’re starting again on this one to see if any new evidence has accumulated over the last couple of years which might influence our current recommendations.

TL: What about the end-stage renal decision?

AD: Sutent and the other three drugs we looked at for treating end stage renal cancer were at the opposite end of the cost scale from the Alzheimer’s drugs. They extended life, but at a very high price. We would have to give up a lot of other health care to buy them. We initially said no, but we were uncomfortable about it because of the extra life that people could get. So we looked at our approach to valuing treatments which extend life at the end of life, and did a bit of recalibration. That enabled us to recommend one of the four drugs, Sutent.

TL: Don’t most new treatments offer something new?

AD: Yes, most things have something new to offer. The issue is not whether something is new or different, but whether that difference has any real value to patients, and whether it’s worth the other health care we could buy, but which we will have to forgo. In practice, we find sufficient value in most of the things we look at to recommend use in the NHS.

TL: What kinds of recommendations have you made?

AD: Of the 350 individual recommendations (in 170 technology appraisals), 84 percent recommend use of the intervention in whole or in part. It’s a pretty good rate. Obviously the companies selling the new products would like us to say “here’s a new product, let’s just use it the way its license suggests it should be used.” The intelligent approach, though, is to take a look at what’s being offered and see what value it adds and then optimize its use by targeting at those patients who can gain the most benefit.

TL: Can you be specific about the types of recommendations you make?

AD: Twenty-nine percent are unrestricted recommendations. That means the interventions can be used across the full range of the licensed indication. For 55 percent of the recommendations, we find that the new treatment benefits some patients—for example, those with advanced disease or that several drugs do the same job—so buying the cheapest makes sense. So we optimize the advice to reflect this.

TL: What about the other 16 percent of your recommendations?

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.

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Trudy Lieberman is a longtime contributing editor to the Columbia Journalism Review. She is the lead writer for The Second Opinion, CJR's healthcare desk, which is part of our United States Project on the coverage of politics and policy. She also blogs for Health News Review. Follow her on Twitter @Trudy_Lieberman.