From Sunak to Corbyn, politicians just can’t resist the campaigning value of stunning new medicines ✒️ IsabelHardman for ipaperviews
Teddi Shaw recently became the first child in the UK to receive new gene therapy for metachromatic leukodystrophy the toddler received has changed her diagnosis of metachromatic leukodystrophy – MLD – from one that would kill her within childhood, to an illness she will live beyond., which has a list price of £2.8m. Teddi was the first patient to have this extraordinary medicine on the NHS, which negotiated a confidential, cheaper, price from the manufacturer Orchard Therapeutics.
The NHS wasn’t really set up to be a high-tech service, and has struggled through its history to deal with big leaps forward in treatment. Its designers, William Beveridge and Aneurin Bevan, both assumed that a universal free-at-the-point-of-access state health service would save money as it met need and improved the health of the population so people could work and live independently for longer.
, IVF and cancer treatments. While doctors were amazed and horrified in equal measure by the first British heart transplant, NHS administrators went into a panic about how much this was going to cost. They similarly tried to dodge attempts to make IVF available on the health service despite doctors arguing then that this was an important treatment for previously incurable infertility.
The years – often decades – of research and testing that go into each of these advances mean they cost a great deal at the start, and as medicine becomes more tailored, some treatments will never get that much cheaper because manufacturers know they are only developing them for a very small cohort of patients.
All health systems have to grapple with these costs: in some, they lead to higher charges, and in others, insurers refuse to cover them. In Britain, the national health services have their own value-for-money and clinical evidence bodies. The National Institute for Health and Clinical Excellence does this job in England, and, weighing its cost up against the price of treating someone who doesn’t get the drug and the wider impact on health budgets.
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