Patient Groups Are Stalking Horses In The UK

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national-kidney-federationThe rising tide of protest over the refusal by the NHS to provide expensive drugs for cancer and other conditions is being funded by the pharmaceutical industry, The Independent reports.

Patient groups have been among the most vocal in attacking the National Institute for Clinical Excellence over restricted access to drugs on the NHS and depend on drugmakers for up to half of their income, but details are often undisclosed. The growing clamour over decisions by NICE to ban access to certain drugs has outraged patients and the public, and undermined confidence in the NHS.

Protests have been launched by charities including the National Kidney Federation, the Arthritis and Musculoskeletal Alliance, the National Rheumatoid Arthritis Society, Beating Bowel Cancer, the Royal National Institute for the Blind and the Alzheimer’s Society. All of these charities received sums of up to six figures from drugmakers in 2007, the paper writes.

The extent of industry support for the smaller charities has led to criticisms that supposedly grassroots patient organisations are puppets of the pharmaceutical industry, being used to bludgeon NICE into making the drugs available on the health service. A positive decision by NICE on a drug not only guarantees sales to the NHS but can influence global markets worth billions of pounds, the paper continues.

Yet none of the charities named has criticised the high prices charged by the pharmaceutical companies for their products in their recent campaigns.

The National Kidney Federation (NKF) accused NICE of taking a “barbaric, damaging and unacceptable” decision when it turned down four kidney cancer drugs for NHS use this year and pledged to campaign against the decision. It did not criticise the cost of the drugs, at more than $5,300 for a 30-tablet pack. Half the NKF’s $530,600 budget comes from the pharmaceutical and renal industries.

The Arthritis and Musculoskeletal Alliance (Arma) organised a protest letter from 10 professors of rheumatology, published in The Sunday Times last month, over a recent Nice decision to restrict access to arthritis drugs. The letter made no mention of the cost of the drugs but Ros Meek, chief executive, admitted that “half, or more” of the charity’s $260,000 income came from pharma.

The National Rheumatoid Arthritis Society described the same Nice decision as “another nail in the coffin” for arthritis treatment and launched an appeal against it this week, with Arma and three drug companies. The society received 49 per cent of its $513,600 budget from the pharmaceutical industry in 2005-06, reducing to 26 per cent of its $836,000 budget in 2006-07.

Beating Bowel Cancer, which condemned a NICE decision to turn down the bowel cancer drugs Avastin and Erbitux as “a scandal”, and assisted a BBC Panorama program on the postcode lottery in drugs for cancer, received 10 per cent of its $1.78 million from drugmakers last year. It also made no mention of the cost of the treatments.

Two of the biggest campaigns against NICE decisions in recent years were organised by the Royal National Institute for the Blind and the Alzheimer’s Society which, between them, represent millions of patients. Six figure sums were paid to both charities by drugmakers last year but because they are large organizations, the donations accounted for less than 1 per cent of their total income.

The Association of the British Pharmaceutical Industry has tightened its code on pharma funding of patient groups, which requires companies to agree grants in writing and to be transparent. Both the RNIB and the Alzheimer’s Society declare their drug company funding on their websites, in the spirit of the code, but many smaller charities do not. Tim Kendall, director of research at the Royal College of Psychiatrists said the pharmaceutical industry reached into “every corner of the health service” in order to gain influence.

“Drug companies will try to do anything to align their interests with those of patients. They do things at every level of the health service and we know they do it with patient groups. It is a multi-pronged approach to persuade patients that their drug is the one.”

Hat tip to Pharmagossip

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  1. Unfortunately these allegations are very true. I work with patient groups in North America and Europe and the strong influence Pharma has over these groups has seriously undermined the patient groups from actually being able to advocate for patients.

    The necessary criticism on the high cost of these drugs is seriously lacking. It seems the idea is to have the patient groups attack the governments, forcing them to pay for the drugs. This seriously undermines the governments ability to negotiate prices with pharam from a level playing field.

    Pharma work very hard to crank up the emotions of the patients.

    It has been quite disheartening to see the amount of manipulation.

  2. A clear case of “grassroots” really being “astroturf”!! (Thanks Corey for this).

    Shame shame shame.

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