By Reflector, Brussels correspondent.
Any complacency that the world of healthcare might be feeling about advances in the ability to treat patients suffered a head-on assault in Dublin, Ireland, last week, at a conference organized under the auspices of the Irish Presidency of the European Union and featuring a galaxy of Irish and European stars from the worlds of politics, regulation, research, industry and patients. “Crazy,” “broken,” “failing” and “haphazard” were among the less extreme accusations made.
“Healthcare systems in Europe are failing patients,” charged one highly articulate cancer patient. Failing #1, he claimed, is inadequate data collection. “We are not in a position to analyse what we don’t have — and we are told this is an information age!” Failing #2 is incompetence. “Delayed and incorrect diagnosis is still far too common — the causes are cultural, structural, and about competence in primary healthcare.” Follow-up is “haphazard,” “often poorly defined, not really understood, and its value is under-researched.” The list went on and on.
“The pharma development model is cracked,” he said. “Because it is profit driven, commercial opportunism results. We get competing agents, me-too drugs and protectionist strategies, which hinder medical practice to the dis-benefit of patients.” Meanwhile, “costs have risen at every stage in the process, which itself has got longer. There is increased regulation. Pricing has become an art form.” And the new emphasis on the search for value is an attempt at something that is “very difficult to define.”
Health technology assessment was dismissed as “fractured,” because its processes are biased against rare diseases and their treatments at the very time when genetic research is fragmenting the old histological definitions of cancer and providing many more new ones, the aggrieved patient went on. “Every cancer is now rare, every treatment is orphan,” he insisted, and “a meaningful randomized clinical trial is sometimes impossible.”
The context for drug development was also pilloried. “To compound the problems, academic peer review and journal publishing is also broken,” ran the accusations. “The academic process kills patients. They die because evidence does not get published at all, they die while journals decide whether to publish evidence, they die because academic and healthcare regulators prioritise peer reviewed publication and thus preserve a system which builds in delay.”
The patient at the forefront of these attacks was Roger Wilson, who founded Sarcoma UK, and who has good reason to know both the merits and the demerits of current treatment regimes. Since he was diagnosed with a soft tissue sarcoma 14 years ago — after initial misdiagnosis — he has experienced multiple operations, chemotherapy, and amputations, and has benefited from successive remissions, but is about to start another round of treatment after Easter.
His recommendations ranged across the full area of interventions. In diagnosis, he argued, “genetics changes everything, and we have never had a better chance of improving things.” Primary treatment could be “an evolving success story for personalised medicine — built on 200 years of skill development, innovation, new technology and some admirable pragmatism.” Follow-up, through risk modelling, nurse-led clinics, and in primary care, could deliver more benefits if they were taken more seriously. HTA bodies should “use judgement, not rigid processes, and be sensitive to social factors, not dominated by economic factors.” He said there was a need for “new systems, which are appropriate for assessing biological treatments, supported with proper use of new technologies.”
The right approach, in his view, would be to recognize that “when curative treatments with toxicity and nasty side effects are futile, healthcare systems must provide the symptom control patients need, simple therapies such as morphine.” And healthcare systems “must offer good counseling and practical support which helps families address their own needs as well as those of their loved one,” he said. “If we fail to take up this last challenge we will create expectations which result in massive dissatisfaction, despair and unhappiness.”
His approach to his audience was as direct as his message was harsh: “Let me also remind you that every one of you will die one day, and rather too many of you from cancer; so I suggest you sit up and pay attention.”
There’s a thought for Easter — one more related to entombment than resurrection.