MORE than 300 people and their families have reason to thank the Scottish Medicines Consortium (SMC) now that it has approved venetoclax for the treatment of the most common form of adult leukaemia.
Chronic lymphocytic leukemia (CLL) mainly strikes the elderly, robbing those whose time is already precious. Across Europe, the median age at diagnosis is 72. It is a highly debilitating and incurable disease. Its symptoms, according to the Consortium, have a “substantial impact on quality of life”, with fatigue, infection and pain adding to the psychological distress of those diagnosed and their families. In Scotland, around 170 people a year learn they have CLL. More than a third, because of a genetic mutation, fail to respond to conventional chemotherapy and have a very poor outlook. But venetoclax is indifferent to this, and three-quarters of patients respond to the drug. The disease arrested, those prescribed it live on average around 27 months. However, despite its efficacy, only seven people in Scotland currently receive it, and that group only as a result of the manufacturer, AbbVie, offering it free of charge on the expectation it would ultimately be reimbursed.
The SMC’s decision to approve its use on the NHS means some 322 patients should be eligible for treatment in the first year, rising to 409 by year five.
The SMC’s is a welcome decision, but one which reminds us of the hard-nosed rationing decisions taken every day in the health service, and which tight budgets make more likely.
As the Registrar General highlighted last week, Scotland’s ageing population, with an 85 per cent rise in the over-75s forecast by 2035, greatly adds to the strain on the system.
Like many SMC decisions, venetoclax went through a Patient and Clinician Engagement (PACE) group used for assessing medicines for end-of-life and very rare conditions. The process, introduced in May 2014 after complaints the assessment system was too crude, allows for a view to be taken on the wider impact a medicine may have on patients and carers beyond direct health benefits.
It also considers medicines for ultra-rare or “orphan” conditions, those affecting around 100 people in Scotland, which might previously have received inadequate attention.
Since PACE decisions began, there have been 65 approvals and 18 rejections. But even with PACE, the bottom line is never far away, and the SMC, while it has a greater degree of latitude, can still turn down drugs which are not “an efficient use of NHS resources”, despite unmet need. In the case of venetoclax, the drug was cheaper than others on the market, although its first 28-day cycle still costs more than £1,100 and subsequent cycles almost £5,000. It may have been one of the SMC’s easier decisions. But as the population ages and demand for end-of-life relief grows, all of society will have to confront far harder choices about what we can and cannot afford
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