Joe Freer: Patient advocacy for antimicrobial resistance

“It was a good idea to get an economist to lead the review,” said Lord Jim O’Neill in Westminster yesterday*, referring respectively to himself and his 2016 report on Tackling Drug-Resistant Infections Globally.

The numbers are important. At current trends, there will be 10 million deaths annually from antimicrobial resistance (AMR) by 2050, and $100 trillion loss of global GDP. The investment cost of the report’s recommendations is $40 billion, with, therefore, an impressive investment return of 2.5 thousand percent.  

This report made headlines when it was published in May 2016, but according to Antibiotic Research UK, who hosted the meeting yesterday at Portcullis House, antimicrobial resistance still isn’t on as many agendas as it should be.

“Scientists have known for a long time about antibiotic resistance; but politicians, policy-makers, and the World Health Organization have only just got on board” said Professor Colin Garner, chief executive of the charity. Dame Sally Davies, Chief Medical Officer, has previously put the issue on a par with climate change and global terrorism, calling the projected state of affairs in 2050 the “antibiotic apocalypse.”

So now that politicians, policy-makers, scientists, and doctors are attentive, who is there left to get on board? The speakers at the meeting drew attention to the lack of awareness about AMR among almost everyone who doesn’t fit onto the list at the beginning of the last sentence: also known, on occasion, as patients. Speaking before the meeting, Ed Whiting, the Wellcome Trust’s new director of policy, said that while patient advocacy had been a powerful part of the campaign to get HIV/AIDS on the global agenda, this was not yet happening in the antimicrobial resistance crisis.

This might be a very useful parallel to draw. A report published in 2011, Back to Basics: HIV/AIDS Advocacy as a Model for Catalyzing Change, highlights lessons from successful patient advocacy in the early years of the HIV epidemic. The report called for patient-driven clinical trial designs, accelerated drug approval, and patient-led activism to garner political will. Walter Capone, current president of the Multiple Myeloma Research Foundation, who previously worked at Bristol-Myers Squibb on HIV pharmaceuticals, has said that early HIV drug development “quickly got mired in the structures of government and industry,” and needed strong patient advocacy to rescue it.

In light of this summons to patients and advocacy groups, two patient ambassadors for the charity were invited to speak at the event yesterday. David Battie, ex-Director of Sotheby’s, and Emily Morris both spoke of their experiences as sufferers of multidrug-resistant infections. David had 10 operations whilst on changing regimes of antibiotics for orthopaedic infections following a severe accident in 2012, and Emily faced highly resistant ESBL E. Coli and Streptococcus infections during pregnancy.

“I was one of the lucky ones,” Emily said, “but I am worried for the next generation.” She went to echo Lord O’Neill’s warning that AMR is projected to cause more deaths globally than cancer by 2050 – and wants people to understand these numbers and act now, so they don’t have to learn, as she did, “the hard way.”

*Lord O’Neill’s speech was played to the conference as a video, as he was unable to attend.

Joe Freer is the editorial registrar, The BMJ. Clinical Fellow, Faculty of Medical Leadership and Management, 2016-17.