Posts Tagged “Scottish Medicines Consortium”

Drug companies are putting a price on the lives of those with cystic fibrosis | Isabelle Jani-Friend | Opinion

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Drug companies are putting a price on the lives of those with cystic fibrosis | Isabelle Jani-Friend | Opinion

Placing a life-changing drug beyond the reach of NHS Scotland is cruel, says recent graduate Isabelle Jani-Friend. At 7am, I wake up and, while most people are starting their days, having breakfast and making their way to work, I – like the 10,400 people in the UK with cystic fibrosis – am beginning my daily treatment regime. For me, this involves a concoction of 30 tablets to fuel my morning, each with their own variety of debilitating side-effects, from sickness to dizziness and fatigue. The morning calm is disturbed by my noisy inhalation machine as I breathe in medications, while a positive pressure machine helps me cough up thick, sticky mucus from my lungs, which takes another hour. All in all, it’s a glamorous way to start the day.

And it doesn’t stop there. Every time I eat, I have to take enzymes to help me digest my food, and I take a regular dose of painkillers to help me get through the aches and pains. It’s a constant reminder of my disability and all the limitations it has on me living a “normal” life. After a long and exhausting day, my medication routine is repeated in the evening, with…

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Cystic fibrosis drugs rejected for use by NHS in Scotland

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Cystic fibrosis drugs rejected for use by NHS in Scotland

Two “life-changing” cystic fibrosis drugs have been rejected for routine use by the NHS in Scotland. The Scottish Medicines Consortium (SMC) said there were uncertainties about the long-term health benefits of Orkambi and Symkevi in relation to their costs. Manufacturer Vertex and the Scottish government are now working “as a matter of urgency” to find a way to allow broad access for eligible patients. Campaigners described the decision as disappointing and unfair.

Orkambi and Symkevi help to improve lung health in patients with cystic fibrosis, but cost about £100,000 per year per patient. The SMC said it heard “strong evidence” from patient groups and recognised that the decision would be “disappointing”. But chairman Dr Alan MacDonald said: “There remained significant uncertainty around their overall health benefits in the long-term, in relation to their costs. “In order to be able to accept these medicines the committee will need to be satisfied of their cost-effectiveness and we continue to work with the company to achieve that.” The SNP MP for Motherwell and Wishaw, Marion Fellows – whose three-year-old granddaughter Saoirse suffers from cystic fibrosis – said she was “disappointed” about the decision.

Saoirse was diagnosed with the condition when she was…

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Canadian Government is Investigating Price of Genetic Disease Treatment

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Canadian Government is Investigating Price of Genetic Disease Treatment

Canada’s Patented Medicine Prices Review Board (PMPRB) is actively investigating the price of Horizon Pharma’s Procysbi (cysteamine bitartrate), a treatment for an inherited medical condition called nephropathic cystinosis.

Marie-Eve St-Hilaire, communications manager at Canada’s PMPRB, confirmed to Focus that the investigation is ongoing. “At this time, whether that price complies with the law remains to be determined,” she said.

Investigations, she noted, are conducted independently and confidentially by PMPRB staff. An investigation could result in the closure of the file a Voluntary Compliance Undertaking (VCU), whereby the patentee agrees to reduce the price and to offset excess revenues through a payment and/or additional price reduction; or a public hearing to determine whether the price is excessive. If, after a public hearing, a price is found to be excessive, the PMPRB can order price reductions and/or the offset of excess revenues.

The investigation follows last month’s publishing of a report on Procysbi from the Canadian Agency for Drugs and Technologies in Health (CADTH) noting, “A price reduction of more than 95% is required for the ICUR [incremental cost-utility ratio] to be less than $100,000 per QALY [quality-adjusted life-year].”

The report noted that the delayed-release drug’s cost can run patients anywhere from…

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NHS knocks back medicines used to treat rare cancers as cost outweighs benefits

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Drugs used to treat two rare cancers have been turned down for routine use by the NHS in Scotland.

The Scottish Medicines Consortium (SMC) advised against the medicines as it ruled the cost outweighed the benefits, despite being allowed more flexibility around the decision since they are used to treat very rare and end-of-life conditions.

One of the drugs, nivolumab, also known as Opdivo, was not recommended as a routine treatment for advanced bladder cancer but was approved by the SMC last July for use on the NHS in Scotland to treat Hodgkin lymphoma, a cancer of the white blood cells.

The consortium rejected the use of obinutuzumab, also known as Gazyvaro, as another treatment option for patients with previously untreated blood cancer follicular lymphoma.

Two further drugs – arbetocin, also known as Pabal, used to reduce the risk of bleeding in mothers following a Caesarean section, and eluxadoline, also known as Truberzi, a treatment for irritable bowel syndrome with diarrhoea – were also not recommended for routine use by NHS Scotland, also on cost to benefit grounds.

SMC chairman Alan MacDonald said: “I am disappointed we were unable to accept these medicines. As the evidence of benefits in relation to cost for…

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