Patient Access Schemes (PAS) are not the “most appropriate” way forward, in the long term, to improving access to medicines, a leading patient spokesman has said.

Effectively, what the National Institute for Health and Clinical Excellence (NICE) does is appraise commercial research, and while it is on the basis of that research that initiatives such as PAS are being put in place, such research often does not reflect clinical practice, according to Eric Low, chef executive of Myeloma UK.

“I think what we are trying to do is fix a system that fundamentally does not work,” Mr Low told a recent parliamentary roundtable discussion hosted by Ian Liddell-Grainger, chairman of the All-Party Parliamentary Pharmaceutical Industry Group. “Until we get to the root of that problem, such things as Innovation Passes and PAS are only scratching the surface of what we really need,” he added.

Myeloma UK’s view is that, to some extent, the PAS initiative “lets drug companies off,” Mr Low told the meeting. Drugmakers need to have much more of an incentive to produce better data and to think about price much earlier on the drug development process, so by the time the treatment gets to the appraisal stage, “it would be in much better shape,” he said.

Discussing the landmark risk-sharing PAS scheme put in place for Janssen-Cilag’s multiple myeloma treatment Velcade (bortezomib) – under which treatment for patients who respond to the drug continues to be funded by the NHS, while the company funds it for those who do not respond after the first treatment – Mr Low pointed out that, in practice, what doctors would do is exactly what the scheme offers; they would not treat beyond a certain number of cycles if there was no benefit to patients.

“With any treatment, doctors would always treat up to a certain point and if patients were not getting the desired benefit and, for example, the side effects outweighed the benefits, they would stop anyway, where there was a response scheme in place or not,” he said.

Moreover, he told the meeting that patients do not attach more or less expectation of outcomes with treatments received under access schemes than they would from treatment obtained in any other way. Patients do not like the fact that the drugs which they are getting are so expensive, he said, adding: “they feel terrible that public opinion is that doctors are spending thousands and thousands of pounds giving drugs to dying patients.”

The way the nation makes available is “madness,” said Mr Low, adding: “something has to change very quickly.”