Populism and public health are a toxic mix
Parental sentiment cannot be the basis for administering the NHS budget
‘If it were down to me personally, I’d have the entire NHS budget spent on my daughter until she is well.” This widely reported statement by Robert Finlay, whose seven-year-old daughter has cystic fibrosis caused by a genetic mutation which is responsive to treatment with the drug Orkambi, is an entirely understandable parental response that readily elicits public sympathy.
It is equally obvious that such parental sentiment cannot provide the basis for administering the NHS budget.
Mr Finlay and other parents are campaigning under the slogan “Don’t put a price on our lives” for NHS funding for Orkambi, which costs £105,000 per patient per year. Vertex Pharmaceuticals, which manufactures the drug, has turned down an offer from NHS England to pay the Boston biotech start-up £500million over five years. As a company whose two UK directors reportedly received share options worth more than £15million in 2017, Vertex has been chastised for overcharging and profiteering.
But does Orkambi work? Following an earlier assessment, the National Institute for Clinical Evidence (Nice) recommended that it should not be purchased by the NHS. According to a Canadian evaluation, two major trials provided “insufficient evidence that it improves quality of life, morbidity or mortality in patients with cystic fibrosis”.
The current impasse recalls one of David Cameron’s earlier follies. In 2010, in response to popular pressure, the former prime minister set up the Cancer Drugs Fund to pay for medications rejected by Nice on grounds of cost-effectiveness. Five years later, it had spent £1.27billion on 47 drugs.
A subsequent review by Prof Richard Sullivan of the Institute of Cancer Policy Research at King’s College London, showed that 18 of these improved survival by an average of three months, and 29 offered no benefits, while causing significant adverse effects. In the words of Prof Sullivan, this was a “massive error” and confirmation that, when it comes to public health, “populism doesn’t work”.
Sepsis step too far
An anxious mother brought her little boy into the surgery last week after he grazed his knee in a playground accident. She was terrified that he might develop sepsis.
Sepsis, the terminal phase of a wide range of conditions, is the latest focus of a disease awareness campaign. Though its early features are nonspecific and often difficult to identify, campaigners claim that it kills 50,000 people every year.
Medical authorities are seeking to ramp up awareness of sepsis, imposing “mandatory guidance” for hospitals and threatening fines if they fail to detect and treat it. Features on daytime television and in popular newspapers aim to familiarise the public with a long list of possible symptoms of sepsis.
Hospital doctors are already warning of the dangers of overdiagnosis and overtreatment, with antibiotics that another official campaign warns may foster resistant bugs. For GPS, it means more worried parents and more unnecessary consultations.
Knock-on effects
The shadow of the opiate crisis, currently causing a wave of premature deaths from abuse and overdose in the US and in the UK, has fallen over two non-opiate drugs. Pregabalin and gabapentin are used for the treatment of difficult cases of epilepsy, severe anxiety and pain resulting from damaged nerve fibres in conditions such as multiple sclerosis.
Like the synthetic opiates, pregabalin and gabapentin have been increasingly used to treat patients who suffer from chronic pain that does not have a neurological basis. Though it is well recognised that these drugs are relatively ineffective in these patients, their euphoriant and hypnotic side effects have led to such widespread abuse that the Government has now reclassified them as class C controlled substances (like cannabis).
Because doctors and pharmacists will now face much tighter regulations, users may experience difficulties in securing regular supplies of medications on which they rely to control their epilepsy, anxiety and neuropathic pain.