Philip Butcher of the Muscular Dystrophy Campaign writes in response to an article on collective commissioning in the NHS

In her opinion piece, Sophia Christie correctly identifies the pressing need for a specialist commissioning capability that understands the rare conditions under its jurisdiction and can represent a patient cohort of sufficient size to justify the management resource applied. Regional or national arrangements therefore make sense with some conditions and, indeed, for neuromuscular disease.

Less convincing is the argument that support for rare conditions is 'doomed to failure and fuelled by a wave of empathetic passion'. This generalises that orphan drug trials 'lack an evidence base on effectiveness'. As a general statement, this is factually untrue. Orphan drug legislation has been put in place in Europe, the US and other countries to assist the development of drugs for rare conditions and thereby to protect the rights of minority patient groups. Huge effort is put into designing trials that square the circle of demonstrable effectiveness and small patient populations. You are probably aware that UK Clinical Research Collaboration is working with other bodies to further improve the regulatory environment for UK-based trials.

Ms Christie's comments generalise that due to costs in the same trials 'there is little information taken over a long period'. Again, as a general statement this is factually untrue. Trials present evidence that is reviewed by interested parties and their views shared. Implying that trials for rare conditions are rushed through is simply to misunderstand best practice.

The conclusion that patients with rare conditions are therefore 'stranded' and 'doomed to failure' is false. It is false because orphan drug legislation exists to protect the rights of minority patient groups. It is false because specialised commissioning, despite its flaws, exists to protect the rights of minority patient groups. And it is false because minority patient groups are not motivated by 'empathetic passion' as you assert but by exactly the same motivation as other patients - to get well.

The desire to do what is best for the biggest number of people, utilitarianism or the ends justifying the means, seems to be the thrust of Sophia Christie's argument. The mistaken premise at the heart of her article is that patients are different. They are not. Only treatments are different. It is the job of the health service to get treatments into the hands of doctors for their patients' benefit.

The Muscular Dystrophy Campaign is working closely with commissioners to ensure that services for families living with neuromuscular diseases become less vulnerable, variable and inconsistent.

Philip Butcher is chief executive of the Muscular Dystrophy Campaign.