MS patients denied drug that slows progression of disease

Manufacturer has reduced the price but Nice says it is still not a cost-effective treatment for patients

THOUSANDS of multiple sclerosis patients have been denied a drug that could delay their need for a wheelchair for seven years, even though the manufacturer has agreed to slash the price.

The National Institute for Health and Care Excellence (Nice) today announced that it would not be funding ocrelizumab for primary progressive MS, available on the NHS in England and Wales.

There are currently no treatments for progressive MS, which affects 15,000 people who gradually decline, losing their ability to walk and see as their nerves become increasingly damaged.

Although the drug has been found to slow the progression of the disease, and maker Roche is offering a significant discount, Nice cannot accept the cheaper price because under Department of Health rules drugs cannot be offered at different costs.

Ocrelizumab is already used for relapsing and remitting MS at a higher price. Patients’ groups and doctors have criticised inflexible regulations that stop it helping thousands more.

Prof Gavin Giovannoni, consultant neurologist at Barts and the London School of Medicine and Dentistry, who has been carrying out trials into ocrelizumab, said: “It’s like they are saying they just don’t care about people with primary progressive MS. Do you think this would be allowed to happen if this was a drug for HIV or cancer?

“As doctors, we are left feeling powerless when we deliver the devastating diagnosis of PPMS to people – we know there is currently no disease-modifying treatment available to help them. It is even more frustrating that an effective treatment that can help slow the disease has been developed and made available across the globe, yet people in England and Wales will continue to suffer disability worsening because of an archaic and inflexible medicine assessment system.”

In clinical trials, people with PPMS saw an average drop of 25 per cent in the risk of their disability getting worse. The treatment could also delay the need for a wheelchair by between five and seven years.

Holly Ford, 25, a Santander call-centre worker from Milton Keynes, who was diagnosed with PPMS in March this year, said she had pinned her hopes on the new drug.

“I know ocrelizumab won’t make me better, but it could stop me from getting worse,” she said. “I’m already struggling to get around. The thought of losing my independence is terrifying.”

Today, the MS Society has launched a petition and is calling on Roche, Nice and NHS England to agree a deal. The charity said the Department of Health was responsible for setting frameworks around price negotiations, but there have been instances where cancer drugs have been allowed for different diseases at different prices on the Cancer Drugs Fund.

Genevieve Edwards, director of external affairs at the MS Society, said: “Bureaucracy is standing in the way of a better future for people with PPMS. It’s wrong that they’re being denied access to an effective treatment. We’re petitioning Nice, Roche and NHS England to put patients first, and agree a deal to make ocrelizumab available at a price the NHS can afford. We must find a way to make this work.”

NHS England said regulations meant that only one price could be accepted for each drug.

Nice said in a statement: “The clinical trial results show that ocrelizumab can slow the worsening of disability in people with the condition; however, the size and duration of this effect are uncertain.

“In addition, the cost-effectiveness estimates for ocrelizumab are far higher than those normally considered an acceptable use of NHS resources.”