Revealed: the awareness campaigns that risk distorting clinical priorities
Elisabeth Mahase investigates how charities, pharma and public health bodies risk driving the worried well to their GPs
pulse october 2018 final cover 2
Last month, health secretary Matt Hancock posted an online video of himself wearing a tracksuit, looking as though he had been interrupted mid-jog, to launch Public Health England’s ‘terrific’ new Heart Age campaign.
The campaign calls for all over-30s to take an online test to find out their heart age and risk of a heart attack or stroke.
But it also urges anyone who doesn’t know their blood pressure or cholesterol level to see their GP, nurse or pharmacist and – in red capital letters – ‘GET TESTED’.
Those who don’t know their cholesterol level, it explains, could need medication, adding that very high cholesterol may be a sign of familial hypercholesterolaemia (FH), and they should discuss this with their clinician.
The test received favourable headlines in the wider media, so it was left to GPs to point out that most 30-year-olds don’t necessarily need to know their blood pressure or cholesterol levels and certainly shouldn’t bother their GP with it.
This, of course, is not the first campaign to urge patients to see their GPs. Government initiatives and charity ‘awareness’ drives often encourage the worried well to get checked out.
But these ‘see your GP’ initiatives can have negative consequences for patients if they are not endorsed by the National Screening Committee – which assesses the effect of screening programmes on the nation’s health as a whole.
Blanket guidance like this, without accounting for other risk factors, can cause more harm than good
Dr Gaurav Gupta
‘Blanket guidance like this, without accounting for other risk factors, can cause more harm than good,’ Dr Gaurav Gupta, a Kent GP and LMC chair, tells Pulse.
‘There is the potential that GPs will end up spending time doing tests that are not clinically necessary, instead of looking after patients who need our help.’
And now a Pulse investigation can reveal how some of these campaigns are supported by pharmaceutical companies, who have an interest in raising awareness of a condition because of the potential impact on demand for their drugs.
Pharma companies naturally want to sell drugs. But over the decades, regulators have imposed tighter restrictions on the way they market, advertise and supply their products. In seeking new ways to promote their wares, it seems they have now found a willing partner in the third sector.
Charities themselves argue their priority is to help patients, while pharma companies say they act in a transparent way and declare donations (see table, further below.)
But GPs say patient-facing campaigns can distort clinical priorities – and as a result there is not enough awareness around conditions that have no new drug or marketing campaigns behind them.
Although the Heart Age campaign was launched by PHE, a government arms-length body, it was based on a heart age calculator developed for the prevention of heart disease by the Joint British Societies – a group including ‘the cholesterol charity’ Heart UK, which has been pushing the FH agenda.
Heart UK even collaborated with PHE recently to write the Familial Hypercholesterolaemia Implementation Guide, aiming to enable local areas to ‘develop services that identify and treat people with FH’, using methods such as ‘searching GP records’.
Heart UK prides itself on being a campaigning charity with a ‘high profile in Parliament’. Its website claims it has been ‘very influential and successfully ensured decision makers such as NICE, NHS England, PHE, the Scottish Medicines Consortium and others consider the impact on people living with high cholesterol, including FH.’
One of its biggest successes came in May 2016, when its lobbying was followed by NICE recommending NHS access to a new class of medicines for FH, PCSK9 inhibitors, which reduce so-called ‘bad’ (LDL) cholesterol. Heart UK ran a public #Yes2PCSK9 campaign, with the tagline ‘cholesterol kills’.
But why did the charity choose to focus its efforts on this class of medicines? One possible explanation is that its campaign committee features representatives from drug companies Amgen and Sanofi – which sell the only two PCSK9 inhibitors on the market.
What role do pharma representatives with such a conflict of interest have on a charitable board?
Dr Zoe Norris
BMA GP Committee lead for sessional GPs Dr Zoe Norris says charities and regulators have a case to answer. ‘What role do pharma representatives with such a conflict of interest have on a charitable board?’ she asks. ‘And for this to have had an outcome on NICE [PCSK9] recommendations and have led to direct working with PHE is a real worry.’
Glasgow GP Dr Margaret McCartney, who has been writing about the pharma industry for 18 years, has noticed a shift towards influencing awareness campaigns.
‘In the early 2000s there were so many reps coming into practices to sell their wares – very presentable individuals with sales pitches, sweeties, chocolates, bringing lunch, taking doctors for dinner.
‘But the industry has really changed since then. Some pharmaceuticals are now trying to work with patient groups to influence them, and they are working much more on committees.’
This is partly as a result of regulatory changes. Companies have had to adapt to keep up with changes, such as the Association of the British Pharmaceutical Industry’s first Code of Practice in 1958 and the UK Medicines Act of 1968 (brought in following catastrophic off-label use of thalidomide in pregnant women), as well as more recent developments in payments to healthcare professionals and product promotion.
According to financial reports, required by law, last year three well-known companies (Roche, Pfizer and GSK) paid UK patient advocacy groups and charities more than £2m. They listed reasons such as consultancy, education, campaigning, patient leaflets and conferences.
Such activity has a real effect on patient demand. In July 2016, a national respiratory campaign launched by the British Lung Foundation called ‘Listen to your lungs’ included an online breath test, warning people to visit their GP if they were ‘worried’ about their breathing.
The charity says 450,000 people took the test, and 135,000 saw their GP as a result. It was funded by AstraZeneca, which has five drugs in the UK for conditions like asthma and COPD, and more in the pipeline.
The money behind the campaigns
Heart Age Test
An online test, developed in part by Heart UK and later taken on by PHE, to warn about risk of heart attacks, stroke and familial hypercholesterolaemia
Amgen, which produces cholesterol-lowering medication, donated £128,000 for the Heart UK Campaigning Committee and FH Action Group (run by Heart UK between 2014 and 2017)
Sanofi, which also produces cholesterol-lowering medication, donated £160,300 for the Heart UK Campaigning Committee and FH Action Group (run by Heart UK between 2013 and 2017)
Listen to your lungs
An online breath test, launched by the British Lung Foundation, that told the public to visit their GP if they were ‘worried’ about their breathing
AstraZeneca, which has five respiratory drugs on the market, donated £51,000 for the campaign and resulting media coverage in 2016
More than 450,000 people took the test, and 135,000 saw their GP
Devised by the Pfizer/Bristol-Myers Squibb alliance to raise awareness of AF–related stroke and the drugs that should be discussed with GPs. Promoted by the AF Association
Pfizer and Bristol-Myers Squibb, which formed an alliance in 2007 and produce an AF drug, paid the AF Association £7,500 for its input into the campaign, and £47,500 between 2015 and 2016 for the charity’s awareness week and for its input into the alliance’s work
‘The Government keeps telling us the NHS is unsustainable and yet this sort of thing stokes public expectation and plays on their fears,’ argues Tower Hamlets GP and LMC chair Dr Jackie Applebee.
Another charity, the Atrial Fibrillation Association, lists a number of drugs for at-risk patients on its website, and urges them to ask their GP: ‘What are the medication options to reduce my risk of an AF-related stroke and what are the differences between them?’
This website was created by Pfizer and Bristol-Myers Squibb; both have been funding the charity and its awareness week, and have a relevant drug on the market. The charity told members it had been developed by expert healthcare professionals and patient advocates.
Experts have asked whether such activities can distort clinical priorities.
Dr Samuel Finnikin, a GP and clinical research fellow at the University of Birmingham, points out that other conditions of which the public does need to be more aware are being left behind.
‘The public only have a certain capacity to absorb health information, and you don’t see awareness campaigns for children’s mental health or recurrent miscarriage – not because these aren’t important, but because there isn’t money for them from pharma companies.
‘These causes are left scrambling around with less funding and less prominence. The playing field isn’t level, and I think that is a real problem.’
Other causes are left scrambling around with less funding and less prominence
Dr Samuel Finnikin
As Dr McCartney puts it: ‘This to me seems to develop inequity in the system. So, you’re only to get funding or attention or publicity if you are sellable. I think it’s a really dangerous way to decide medical education, for example, or where funding should go and media attention should be.’
GPs are now calling for change. Guildford GP Dr Martin Brunet says: ‘The UK National Screening Committee (NSC) is an arbiter of appropriate screening.
‘Those who want to encourage earlier diagnosis for whatever reason bypass the NSC by calling screening “case finding” or “raising awareness” – which often leads to a call to have a test – ie, get screened.
‘Health authorities should look at the evidence for and against such campaigns and help the public to be properly informed, which would often involve discouraging people to respond to the campaign. The first question should always be, what does the NSC say?’
The NSC – through the PHE press office – declined to comment. But, for its part, PHE says: ‘The Heart Age Test is a simple way to help people think about heart health and has strong clinical and academic support. It has been available for over three years and there is no evidence that it results in people attending their GP practice unnecessarily.
’PHE’s work to protect and improve the nation’s health and wellbeing is entirely independent and underpinned by world-leading science, knowledge and intelligence.’
But Dr Finnikin disagrees. ‘We need more oversight of these campaigns. PHE should be the body to speak out and discourage these campaigns, but its Heart Age Test shows it doesn’t have a full grasp of the issues either.
What the charities and pharma companies say
Heart UK ‘Transparent collaboration between charities and industry partners allows the patient voice to be recognised. We are independent and will only seek, and accept, support from industry partners for projects that directly support our vision to prevent premature deaths.’
British Lung Foundation ‘Our online breath test helps people understand symptoms and seek help. We share an interest with GPs and pharma companies in ensuring access to appropriate medicines that could improve people’s lives.’
Atrial Fibrillation Association ‘Like all charities we ensure we do not rely on any one funding source. The AF Turnaround project is led by experts, with ourselves and Anticoagulation UK acting as chairs of the expert healthcare professionals and patient advocates. The content is developed and approved by these experts, not by the pharma companies.’
Amgen ‘We show our commitment to tackling cardiovascular disease is through collaboration. We share our desire to raise awareness of FH not only with Heart UK but with many clinical experts.’
Sanofi ‘We work with, and support, a number of patient organisations in the UK and we are open and transparent about these relationships. We believe these partnerships help us understand the needs of patients. Our funding helps patient organisations’ further their work.’
Roche ‘We are proud to support medical and educational activities organised by healthcare and patient organisations. We are fully committed to transparency and publish all transfers of value with patient groups online.’
Pfizer ‘We believe transparency is essential when working with patient organisations. By working together we can truly put the needs of patients first.’
AstraZeneca ‘As one of several sponsors of the BLF’s Breathlessness campaign in 2016, we had no input to the campaign’s content.’
Bristol-Myers Squibb ‘Patient organisations and pharma companies regularly work together to improve outcomes. By operating with a high degree of transparency we can be confident and proud of these relationships.’