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Found 3 results

  1. Investigation reveals how the NHS is impeding access to high priced drugs An investigation published by The BMJ today reveals how the NHS is impeding access to high priced drugs for hepatitis C. Researchers from the University of Cambridge and the University of Bath, and The BMJ, show how NHS England, unable to budget for broad access to these drugs, tried to alter the outcome of the NICE process, and when it failed, defied NICE’s authority by rationing access to them. The investigation also exposes key weaknesses in our current system of assessing the value of new therapies and delivering them to patients - and asks, is company pricing to blame? Hepatitis C is a virus that can infect the liver. There are an estimated 214,000 individuals chronically infected in the UK which, if left untreated, can cause life-threatening liver damage. In 2014, two new drugs for hepatitis C infection were launched (Sovaldi and Harvoni, manufactured by Gilead Sciences) - offering cure rates of over 90%. But with prices ranging from around $90,000 per patient in the US to almost £35,000 in England and 41,000 euro in France, they have sparked a global debate about access to high priced medicines for governments with limited resources. During the course of this investigation, it has emerged how apparent panic over high prices and affordability led NHS England to deploy many delaying tactics, which succeeded in hampering timely access to these drugs. For Sovaldi, NHS England spuriously asked for six months to implement guidance (the mandatory 90 days and an additional three months), saying it needed time to set up a proper database to audit patients and usage of the new drugs. NHS England also tried to completely block Harvoni and two other competitor drugs undergoing appraisals at NICE, and questioned the level of clinical evidence. Andrew Ustianowski, a consultant in infectious diseases at Pennine Acute Hospitals NHS Trust, says: “I think some people in NHS England would love to clip NICE’s wings and turn it into a kind of recommendatory rather than mandatory body. And if you are going to choose a fight then choosing this battlefield is quite a sensible thing to do – a marginalised population, very high-cost drugs.” Dr Ustianowski resigned from NHS England's clinical advisory group, in protest at deliberate attempts to delay access to treatment. “I didn’t want to be associated with what was happening,” he told The BMJ. NICE did eventually succeed in publishing guidance recommending these drugs for the majority of hepatitis C patients. But NHS England is not fully following NICE’s mandate, which requires that approved drugs are made available within the NHS. Instead it has restricted use of the new drugs by forcing quotas on clinical teams around the country. This rationing has left many clinicians facing hard decisions and difficult conversations with patients who have already seen their treatments delayed several times. And there is now growing evidence that some frustrated patients are turning to overseas “buyers’ clubs” to source the drugs at their own expense. NHS England says its delivery of drugs is entirely within the parameters of the NICE guidance - and highlighted Gilead’s pricing as the key reason why treatment was being delayed. This echoes major criticisms of Gilead’s pricing strategy in the US, where legislators said the company had adopted a strategy “designed to maximise revenue with little concern for access or affordability.” So why didn’t NHS England strike a better pricing deal with Gilead? Under current rules, NHS England is unable to negotiate specific deals with individual drug companies. A spokesperson for NHS England said it was “exploring the potential for a longer term strategic procurement for a supply agreement with the industry to improve the affordability of and access to treatment further.” Whatever the reason for the failure to achieve broad access to the new hepatitis drugs in England, the Hepatitis C Trust, a patient advocacy organisation, believes the NHS is risking legal action over its decision to ration them. Chief Executive, Charles Gore, said the Trust has “already spoken to solicitors to take on any cases that come up, because we are not going to have NHS England pick on a disenfranchised group.” In a linked analysis, researchers argue that the acquisition strategies of drug companies magnify development costs and leave the public paying twice - for research and high priced medicines. Solutions, they say, include giving health systems increased power to negotiate pricing and payment models, limiting share buybacks, and testing other ways to encourage and reward drug development. In a linked editorial, Professor Mariana Mazzucato at the University of Sussex discusses why government must negotiate a better deal for publicly funded research. She believes that an effective pricing system “should ensure accessibility but also reflect the public contribution so taxpayers don’t pay twice, through publicly subsidised research and high priced medicines.” Importantly, she adds, "drug pricing must be completely transparent, so that governments can negotiate for better value on behalf of their populations." Link to investigation Link to analysis Link to editorial
  2. Google granted access to 1.6m UK patient health records for 'research' The artificial intelligence division of Google, DeepMind, has been granted access to around 1.6 million UK patient health records. This agreement will allow Google to research and develop an 'early warning system' for patients who are at risk of developing acute kidney injuries. It will allow doctors to be able to more effectively diagnose the condition and find the right treatment much quicker than would have previously been possible. As part of the agreement, Google will have access to a substantial amount of data, which includes the full names of patients, as well as their medical history; although, the data will be encrypted, so that Google employees are not able to match any piece of data with a specific person. Whilst employees will not have access to an unencrypted version of the data, Google has not ruled out the possibility of using the data for other medical related uses, citing that it will only be used for improving healthcare and will not be linked to any specific Google account or service. Royal Free, one of National Health Service's (NHS) trusts providing the data, is believed to have approached Google to build the app. One other trust is also providing data: Barnet and Chase Farm hospitals. The data will date-back up to 5 years and will run up until 2017. Sam Smith, one of the co-ordinators of the patient data campaign group, MedConfidential, raised concerns about the amount of data Google is receiving, and why this data is available to begin with: Acute kidney injuries (AKI) are estimated to be a contributing factor of up to 20% of all emergency hospital admissions. According to the NHS, around a quarter of these cases are preventable. Source: New Scientist via BBC News | Image: NBC News
  3. OBSERVATIONS Medicine and the Media Worst cases of patient care in the NHS http://www.bmj.com/c...3/nov23_1/d7592 BMJ 2011; 343 doi: 10.1136/bmj.d7592 (Published 23 November 2011) Cite this as: BMJ 2011;343:d7592 Margaret McCartney, general practitioner, Glasgow margaret@margaretmccartney.com The media made a lot of the recent Patients Association report of the worst cases reported to it but largely ignored the Commonwealth Fund’s report that found that the NHS provides excellent care, writes Margaret McCartney www.patients-association.com/Portals/0/Public/Files/Research%20Publications/We%27ve%20been%20listening,%20have%20you%20been%20learning.pdf). In particular it described patients “desperately thirsty” and a relative who had “to run out into the corridor screaming for help as her husband lay dying in his bed, because nobody answered the call buzzer.” The Patients Association has done it again. Its “damning report into poor care in England’s hospitals,” released on 9 November 2011, “contains some shocking accounts of care received by patients in hospitals across the country, focusing on four key fundamentals of care—communication, access to pain relief, assistance with toileting and help with eating and drinking” ( www.telegraph.co.uk/comment/telegraph-view/8879458/A-filthy-shame.html). Christine Odone wrote in a blog on the Telegraph’s website, “We’re talking neglect so horrific, that patients were left to lie in their own faeces, and to die of dehydration” (http://blogs.telegra...ightback-begins). ITN said that it was a “harrowing report,” describing patients “left ‘starving’ in hospital,” and recommended “tough action” (www.itn.co.uk/home/33084/Patients±left±starving±in±hospital). The Daily Mail reported, “Scandal of OAP [pensioner] treated like a ‘slab of meat’ exposed in damning report into NHS care” (www.dailymail.co.uk/health/article-2059211/NHS-care-Hospitals-treat-elderly-like-slabs-meat.html). The report consisted of 16 stories of patient care, mainly written by relatives. The press, somewhat predictably, ran with it. “A filthy shame,” said the Daily Telegraph. “Neglect: the inadequate care of the elderly has been known for many years yet the scandal continues” ( www.patients-association.com/Portals/0/Public/Files/Research%20Publications/Listen%20to%20patients,%20Speak%20up%20for%20change.pdf). The previous year, 16 cases were described in Patients not Numbers, People not Statistics (www.patients-association.com/Portals/0/Public/Files/Research%20Publications/Patients%20not%20numbers,%20people%20not%20statistics.pdf). The Patients Association has produced similar reports. In 2010 it wrote Listen to Patients, Speak up for Change, 17 accounts of NHS care ( The association selects the cases on the basis of the worst calls its helpline receives, making it difficult to judge care in hospitals fairly. At the back of the new report are responses from hospitals to the reports of poor care. Some hospitals accept the diagnosis of poor care. Others do not. For example, Patient B’s daughter said in her narrative, “I was contacted by a senior officer from Social Services and was told that a safeguarding alert had been requested against me by members of the ward staff.” The hospital responded: “All of the complaints made in this case were extensively investigated at the time. The findings were shared with the family at the time and we have always been prepared to meet with them should they wish.” Undoubtedly examples of poor care among staff exist in the NHS, but because of confidentiality the Patients Association’s report contains no detail from hospitals to clarify, explain, or indeed challenge the allegations made. Is this the best way to improve clinical care? Or do unintended harms result from this kind of report? 10.1377/hlthaff.2011.0923;BMJ 2011;343:d7237, doi:10.1136/bmj.d7237). It found that the United Kingdom produced the fewest errors and gaps in care and was least likely to skip care (adults going without care because of cost). Patients in the UK had the greatest ability to see a doctor or nurse the same or next day (first equal with Switzerland); had the least difficulty in getting out of hours care without having to go to an emergency department; and were most likely to have their prescriptions reviewed and discussed. UK patients were most likely to believe that staff encouraged them to ask questions and spent enough time with the patient; were just one point behind Switzerland in reporting a positive experience of shared decision making; and were best overall in being able to call to get advice or ask a question. This was a glowing report for the NHS, but it went almost entirely ignored by the UK press. On the same day the Commonwealth Fund, a US “private foundation working towards a high performance health system,” reported findings from its 2011 survey of patients with complex care needs in wealthy countries (Health Affairs doi: “The unbalanced nature of the coverage for that day was outrageous,” said Clare Gerada, chairwoman of the Royal College of General Practitioners. “I accept that we always have to improve patient care and that the Patients Association presented 16 cases of really bad care. This is about one in a million cases of patient care. “And yet the Commonwealth Fund’s report, which comes from an independent think tank, found yet again that the NHS outperformed all other industrial countries’ health indicators and that British general practice was the best. This was an embargoed, press released report, yet there was zero coverage [in the general press] with the exception of the Daily Telegraph.” She is concerned that such unbalanced reporting results in wider harms. “For those of us working in the NHS, and doing our best, we find this demoralising and humiliating. Week in, week out, an organisation or charity or company does an audit and concludes that GPs need more training or more funding is needed. Yet the NHS is not failing.” She is also mindful that this debate is taking place in the context of the passage of the health bill, currently being examined in the House of Lords. On the press’s coverage of doctors Dr Gerada says, “I talk about this as our weekly humiliation.” www.virgin.com/company/assura-medical). Richard Branson, who set up Virgin, is a vice president of the association. The reports the association have issued have not led it to report any improvements. Instead the reports may decrease morale, leading to the most caring healthcare professionals bailing out, and this remains a real potential harm. The Patients Association is funded by “corporate partners,” including the drug companies Abbot, AstraZeneca, and Pfizer. It is also sponsored by Virgin Healthcare, the majority shareholder in Assura Medical, which half owns 25 “GP provider companies” in England together with local general practitioners ( Notes Cite this as: BMJ 2011;343:d7592
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