Cancer Commissioning—at a global and a local level: London Cancer New Drugs Group Annual Meeting

Very rare cancers—the challenge

Rod Griffiths (Chair, National Commissioning Group, London) reported that the majority of cancers do not meet National Commissioning Group (NCG) thresholds of rarity. NCG funding is usually restricted to those malignancies affecting 400 patients or fewer in the UK—and in practice, often a lot less.

He was critical of risk-share schemes for the treatment of very rare cancers. “If the patient is still alive after 2 years, the pharmaceutical company offers to pay for the cost of the drug. It sounds like a good deal,” he said. “What they are saying, however, is that if the drug works, the drug company will pay. If it doesn’t work, the NHS will have to pay. The NHS is usually in the business of paying for what does work. It almost creates an incentive for the companies to produce very expensive drugs that don’t work. Meanwhile, surviving patients will sing the praises of their life-saving drug—while those who don’t survive won’t be in a position to say anything at all. We’re between a rock and a hard place.”

Furthermore, said Dr Griffiths, market forces do not work in rare cancers. “If there are too few patients, there will be no valid comparisons between competing therapies, so outcomes are unlikely to improve.” Therefore, NCG validation invariably involves designating a small number of clinicians/service providers for rare cancers to improve the quality of the service offered, often using international comparators as a benchmark. It also has the beneficial effect of speeding up rates of referral to the few specialists capable of managing a rare cancer.

Dr Griffiths reported that some pharmaceutical companies seek to exploit the orphan drug status of therapies for rare cancers—lack of competition might provide a period of additional exclusivity.

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