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Removing the NHS safety net
• Victims of rare but treatable conditions could be abandoned to their fate
• Ministers have quietly moved NHS cost-saving into new territory
• Decision on life-saving drug has far-reaching consequences for health service
Hidden NHS reforms could have a devastating impact on patients with rare diseases, a report published by the independent think tank Civitas warns.
Ministers have effectively removed the guaranteed NHS safety net with a decision that has been implemented under the radar with no real democratic process or debate, the paper says.
This new approach would see victims with treatable but rare conditions left to fend for themselves, in a breach of the founding principles of the NHS.
In the report, former Department of Health adviser Tony Hockley highlights a little-noticed recent decision by the government to reject advice on the commissioning of a new drug for an ultra-rare disease.
Dr Hockley warns that NHS rationing appears to be moving onto new ground with the removal of comprehensive coverage against exceptional needs.
Ministers have declined to implement the recommendation of the Advisory Group for National Specialised Services (AGNSS) that Soliris (eculizumab) be made available on the NHS for the treatment of atypical Haemolytic Uraemic Syndrome (aHUS).
AGNSS had assumed that the drug would be available from October 2012 but after months of delay the Health Minister Earl Howe announced in January that it would be subjected to a second assessment under a new regime to be established within the National Institute for Health and Care Excellence (NICE).
The decision has angered aHUS patients and clinicians, but the condition is so rare - there are fewer than 20 new diagnoses a year - that protests have had little impact.
Dr Hockley raises concern that the government appears to be shifting retrenchment policy onto new ground.
"This decision may herald a significant new front in the withdrawal of NHS coverage," Dr Hockley writes in One small step for the NHS, but one giant leap for its principles?
If this is the case, he argues, it represents a significant change in the contract between citizens and the state which warrants substantive debate.
"Ministers should give an honest explanation of their interpretation of 'affordability' and their views on the apparent trade-off between life-saving treatments for the few and routine NHS services for the many, and explain the alternatives available to those affected by these decisions.
"Politicians of all parties in Britain have defended the NHS system of tax-funded care on the basis that a single national risk pool provides an efficient means of comprehensive coverage against exceptional needs.
"Nowhere is this more relevant than in the case of very rare and very serious, but treatable disease."
He says there is now a question-mark over whether the "rescue principle" - removing the fear of potentially ruinous treatment costs - remains central to health policy in Britain at a time of austerity.
"Utilitarianism may be gaining the upper hand over the rescue principle," Dr Hockley writes.
AGNSS assessed eculizumab to be "close to the top end of the scale of effectiveness", yet Earl Howe has requested further advice on its "cost, benefit, and affordability". This second assessment is still awaited.
In the meantime, nationally-funded access to the treatment is available on an ad hoc basis via Individual Funding Requests, but available only to newly-diagnosed patients.
"It may be that this latest decision, over which ministers had deliberated for several months, takes the concept of equity in the NHS in a different direction with less emphasis on the rescue of small groups of patients with serious but rare diseases and greater emphasis on overall health gain in health spending," Dr Hockley writes.
"Some have already argued that this should indeed be the case, in response to the limited success of legislation to encourage the development of orphan drugs. It is not, however, a path that should be pursued without debate in a tax-funded health system justified on grounds of social solidarity."
He points out that the NHS Constitution commits to a "comprehensive service available to all" but with a wider duty to promote equality with particular attention to groups "where health and life expectancy are not keeping pace with the rest of the population".
"If models based on explicit insurance contracts cover small but catastrophic treatable risks, and the implicit 'comprehensive' contract of the NHS does not then public support for the current system, founded upon the elimination of fear of disease, may also legitimately be called into question."
Civitas director David Green said: "Economic austerity requires a serious discussion of the purpose of the NHS, so that taxpayers' money is targeted where it is most needed.
"Coverage of financially catastrophic but very rare events is one of the most common arguments for state intervention. A political approach based on gradual withdrawal from such coverage leaves everyone vulnerable. It also sends a signal of reduced support for bio-pharmaceutical innovation."
Tony Hockley teaches in the social policy department at the London School of Economics and was a special adviser to health secretaries Virginia Bottomley and Stephen Dorrell. He is now director of the Policy Analysis Centre.
A PDF of One small step for the NHS, but one giant leap for its principles? can be accessed here. Hard copies are available on request.
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Civitas: Institute for the Study of Civil Society is an independent social policy think tank that facilitates informed public debate on important issues of the day. It has no links to any political party and its research programme receives no state funding