Most people with multiple sclerosis (MS) in the UK do not receive medication that could alleviate their symptoms and delay the progression of the disease.

A survey of over 10,000 patients by the MS Society found access to drugs was 68% in Northern Ireland, 40% in England, 36% in Scotland and 30% in Wales.

The charity said that limited patient access to specialists was the main reason for the prevalence of under-treatment.

Only two other EU countries, Poland and Romania, had a lower level of uptake of medication for the disease.

The relatively high level of medication for MS in Northern Ireland reflects the fact that only that country offers patients a twice-yearly review with a specialist.

The MS Society called for the NHS to provide every MS patient with a personalised care plan.

The study found that 41% of patients who said they had enough information about drugs still did not take one.

It concluded: “This could be due to barriers to accessing medicines; because individuals make an informed decision not to take them; or because they don't know what information is out there, such as around new treatments or new evidence of efficacy.”

Nick Rijke, Director for Policy and Research at the MS Society, commented: “These findings worryingly suggest that the likelihood of someone receiving a life-changing treatment is often based on luck – like where they live or how helpful their healthcare professional is.”

The Society noted that NHS rationing was denying many patients access to the more expensive MS drugs, even though these might be more effective.

MS affects about 100,000 people in the UK, three quarters of them female.

Research projects concerned with disorders such as dementia and multiple sclerosis have been destroyed by Italian ‘animal rights’ extremists.

Laboratories at the University of Milan and the associated National Institute of Neurosciences were invaded by activists who abducted laboratory animals and destroyed cage signs, wasting years of research.

The Basel Declaration Society, which campaigns for stronger ethical codes on the use of animals in medical research, has condemned the action as harming the future of biomedical research in Europe.

The projects targeted by the activists focused on neurological disorders including autism, Alzheimer’s disease, MS and Parkinson’s disease.

They abducted about 100 purpose-bred animals that need special care and so are unlikely to survive; and removed all cage signs, spoiling the ongoing research. The cost of the lost work has been estimated at nearly a million Euros.

Professor Zeller, President of the Basel Declaration Society, said: “Animal research remains an essential pillar of all biomedical research. In particular basic research in neuroscience, which is the focus of our Milan colleagues, is key to tackling the healthcare problems of aging European societies.

“Extremists who destroy laboratories and ‘liberate’ animals commit serious crimes and attack the core of our democratic principles.”

The Society has called for life scientists worldwide to show solidarity with their Milan colleagues by a number of means, including asking stakeholders in neuroscience to submit proposals and suggestions to alleviate the damage inflicted on the Milan research projects.

‘Animal rights’ extremists in the UK have repeatedly made bizarre claims to justify their attacks on research facilities – for example, the Animal Liberation Front leader, speaking on Newsnight, stated that all drugs are ‘petrochemical’ and therefore obviously without medical value.

Sanofi has responded to protests against the withdrawal of its drug Campath by restoring access for a limited number of patients with multiple sclerosis (MS).

Campath (alemtuzumab) is approved for treatment of leukaemia but is prescribed off-label for treatment of MS.

To offset the effects of its withdrawal from the market, prior to a rebranding, Sanofi has agreed to make 201 vials available for MS patients in the UK.

In September 2012, Sanofi’s subsidiary Genzyme withdrew Campath to allow a new version, Lemtrada, to be licensed for treatment of MS in the UK.

This meant both that the drug’s price would increase by a factor of 15–20 and that a gap would be created in its availability.

There was widespread protest from doctors, including a letter to the Health Secretary from three specialists warning that patients could miss the window of ‘therapeutic opportunity’, with serious medical consequences.

One of the letter’s authors, Professor John Zajicek, commented that Sanofi’s approach was “morally corrupt”.

Genzyme has agreed to supply a further 201 vials of the drug for the patients of six specialists who were using it as a treatment for MS – however, it will not be available for new patients.

Professor Zajicek said the company’s response was “disappointing”, with Genzyme setting conditions that “don’t make sense”.

The decision to rebrand Campath was based on clinical trials that showed it to be more effective against MS than the current treatment, interferon beta-1a.

Researchers at the University of Cambridge said the drug had a “transformative” effect, and could be given to two-thirds of patients newly diagnosed with MS.

Genzyme stated that gaining regulatory approval for alemtuzumab as a treatment for MS was the best way to ensure patient access.

However, critics have predicted that its price as a licensed drug in this indication will be 15–20 times as high as its current price (which follows patent expiry).

Biotech company Genzyme has appointed Brendan Martin as General Manager for UK and Ireland, with responsibility for all commercial activities.

Brendan Martin joined Genzyme in 2002 and established its lysosomal storage disorders business in Ireland before becoming the company’s Business Unit Director in 2007 and Deputy General Manager for UK and Ireland in 2010.

He replaces Paul Drohan, who leaves Genzyme after 17 years to return to Canada and pursue other opportunities.

Robin Kenselaar, Head of Genzyme EMEA, said: “Brendan’s appointment as General Manager UK and Ireland comes at a key time for the business as it builds its multiple sclerosis franchise and continues to develop in rare diseases.

“In his Genzyme career to date, Brendan has shown he is a leader with the experience, energy, vision and commitment to patients needed to move us forward.”

Part of the Sanofi group, Genzyme in the UK focuses on rare inherited and immune diseases, with a commercial base in Oxford.

Its UK manufacturing facility in Haverhill in Suffolk is a major global distribution centre for the company’s products for genetic diseases.

Genzyme has been a leading global biotech company for 30 years.

Leading UK neurologists claim Sanofi’s decision to replace an off-label multiple sclerosis (MS) drug with a costlier licensed version “shows little regard for patients”.

The French pharma giant is withdrawing Campath (alemtuzumab) from unlicensed use as an MS treatment ahead of the regulatory approval of new version Lemtrada, which is expected to cost up to 20 times as much.

Three UK professors of neurology have written to Health Secretary Jeremy Hunt, saying the decision “has serious implications for vulnerable UK patients”.

Lemtrada is manufactured by US biotech company Genzyme, which Sanofi acquired in 2011.

Sanofi claims that off-label use of Campath, which has taken place since 1998, could put the approval of Lemtrada (expected in 2013) at risk.

It has allowed the continued use of Campath for treatment of leukaemia (its licensed indication) via patient access schemes.

However, French business journal Challenges argued that the withdrawal of Campath as an MS treatment was “dictated only by the logic of profit”.

The letter to the Health Secretary from professors Neil Scolding, Neil Robertson and John Zajicek says the withdrawal leaves patients who have started treatment stranded, while new patients may miss the “window of therapeutic opportunity”.

As the licensed version is expected to cost “15 to 20 times” as much, they comment, the decision “shows little regard for patients whose opportunity to alter the course of their disease is time-limited, and may represent an over-enthusiastic attempt by the parent company to profit from the current situation.”

Speaking to the Independent, Professor Zajicek called Sanofi’s approach “morally corrupt”.

However, a Genzyme spokesman argued: “Off-label use of alemtuzumab in MS has always been at the discretion of individual clinicians without reference to the company.”

Sub-standard primary care treatment for people with neurological conditions is resulting in a high number of emergency hospital admissions, a new report has said.

A report by the Neurological Alliance accuses the NHS of neglecting patients through delays in diagnosis and failure to provide information on treatment options.

The Alliance said that the NHS reforms would not improve standards of care due to levers “not being mobilised to support improvements”.

The report called for the new bodies created as part of the Health and Social Care Act to address the “legacy of neglect” that has resulted in “unacceptable variations in outcomes and higher than necessary costs”.

Neurological conditions, such as epilepsy and multiple sclerosis, account for 5% of overall spending on the NHS.

The DH and the NHS Commissioning Board have now been challenged by the Alliance to devise indicators for quality of service that will overhaul and improve standards of care.

The DH said that discussions were already taking place to ensure that strategic clinical networks cover these conditions. “We are working closely with patient groups and health professionals to develop a new Long-Term Conditions Strategy,” said a spokesperson. “The NHS Commissioning Board is already planning to drive improvements to improve mental health services, dementia and neurological conditions.”

The Neurological Alliance is formed by 70 charities that work with people with related brain, spinal column or nerve conditions.

The FDA has said that MS drug Gilenya (fingolimod) should not be used in patients with a recent history of stroke or heart disease.

The requested label change adds to changes requested by the EMA and the FDA in April to reduce the risk of cardiovascular and neurovascular events.

The FDA also concluded that a number of sudden deaths in patients with severe MS taking Gilenya could not be conclusively linked to the drug.

Gilenya was recommended by NICE in late April as a “valuable new therapy” for severe relapsing-remitting MS.

The new FDA safety review reinforced the earlier recommendation that doctors monitor the heart rate of patients taking Gilenya for the first time.

However, it said that the death of a 59-year-old patient in November after a first dose of Gilenya could have been caused by the patient’s advanced brainstem MS lesions and not by the drug.

In other cases of sudden death in patients taking Gilenya, it said, the drug’s “contribution to the death was unclear”.

However, the FDA definitely recommended not using Gilenya in patients who have suffered a stroke or heart disease within the previous six months, or who are taking certain medications for cardiac arrhythmia.

Gilenya was approved in the US in 2010 and in the EU in 2011, and remains the only oral MS drug on the market.

The FDA and the EMA are to review Biogen Idec’s marketing application for BG-12 (dimethyl fumarate), an oral therapeutic candidate for the treatment of multiple sclerosis (MS).

BG-12 is the only known investigational compound for the treatment of MS that has experimentally demonstrated activation of the Nrf-2 pathway.

It has demonstrated significant reductions in MS disease activity, coupled with favourable safety and tolerability in two separate Phase III clinical trials.

Last year, Biogen published data from the DEFINE and CONFIRM global clinical trials that demonstrated BG-12’s effectiveness in patients taking the treatment either twice or three times a day over a period of two years.

As a result, the FDA has now accepted Biogen’s New Drug Application and granted the company a standard review timeline. In addition, the EMA has validated a similar application for review.

A cannabinoid drug for the treatment of spasticity associated with multiple sclerosis (MS) has completed the European Mutual Recognition Procedure (MRP).

Sativex, developed by specialist company GW Pharmaceuticals together with Almirall, is the first treatment with this specific indication.

Already approved for sale in the UK and seven other EU member states, Sativex will shortly be available across 18 European countries.

The drug is also undergoing phase III trials as a treatment for cancer pain.

Spasticity occurs in up to 75% of people with MS, a condition affecting an estimated 100,000 people in the UK.

Sativex is an oromucosal spray whose active ingredients are derived from the cannabis plant. The drug binds to receptors in the brain, reducing the nerve activity that causes spastic movements.

The drug is effective in people with MS at all degrees of severity.

GW Pharmaceuticals is a UK company that develops cannabinoid prescription drugs under licence from the Home Office. It partners with Spanish company Almirall for sales and distribution of Sativex.

Bertil Lindmark, Chief Scientific Officer at Almirall, said the completion of the MRP regulatory process “reinforces our commitment to expand this innovative medicine to MS patients across Europe”.

Merck KGaA intends to focus on cutting jobs and reducing costs over the next two years, with no major acquisitions planned.

The ‘German Merck’ plans voluntary redundancies in Germany and will cut its costs through 2018, with a first phase until the end of 2013.

Merck CEO Karl-Ludwig Kley (pictured) told shareholders that given opportunities, the company would “continue to strengthen our business through in-licensing or targeted acquisitions.”

The company claimed there is “no alternative” to shedding staff.

The acquisition of life science research company Millipore in 2010 helped Merck KGaA to achieve an 11% increase in revenue over 2011, and the company predicts a slight revenue increase over 2012.

However, Merck’s net profit for 2011 fell by 2%, and increasing competitive and market pressures are predicted over the next few years.

The company’s austerity restructure is expected to last through 2013, during which time it plans to avoid major takeovers.

This decision follows a number of pipeline setbacks, including the FDA’s rejection of Merck Serono’s MS drug cladribine in 2011.

Kley’s statement contrasts with the view expressed recently by Lilly CEO John Lechleiter: “I don’t think we can save our way out of the enormous challenge we face. The best course is to maintain our focus on advancing our pipeline.”