Brexit isn’t the only big news from across the pond.
Over the holidays, the United Kingdom’s health care rationing agency — the National Institute for Health and Clinical Excellence, known simply as NICE — blocked an effective treatment for breast cancer from being used by the National Health Service. Despite clear evidence that the treatment extends the life of patients with breast cancer, NICE bureaucrats determined that those lives simply weren’t worth the cost of the treatment.
“We know that people with cancer place great importance on drugs that can increase their life expectancy,” Carole Longson, director of NICE’s health technology evaluation unit, told The Guardian.“But the reality is that the price of trastuzumab emtansine is currently too high in relation to the benefits it gives for it to be recommended for routine commissioning in the NHS, even taking into account the end-of-life criteria and the patient access scheme.”
British patient advocacy groups immediately criticized the “disastrous” decision. Breast Cancer Now, which has started an online petition to overturn the decision, described it as “a huge setback for the treatment of advanced breast cancer.”
“Kadcyla can give people nine months longer to be there for the moments that matter – the first day at school, a wedding, a family birthday – with far fewer enduring severe side-effects like sickness and diarrhoea than with many other drugs,” Breast Cancer Care said.
Sadly, it’s only the latest in a long history of oncology denials. One presentation at ISPOR’s 18th Annual European Congress found an increasing number of negative recommendations for oncology products by NICE since 2010.
Patients with rare diseases are worried that they could be next on NICE’s list.
As evidenced by the breast cancer treatment ban, the United Kingdom’s health care rationing agency places a strong emphasis on “quality-adjusted life year,” or QALY. In order to get the right treatment, you have to have a high enough QALY to be worth it.
“Local NHS leaders need to shout loudly that not every cancer drug can be financed, not every small A&E unit should remain open, and many community hospitals are totally uneconomic,” wrote a former Labour politician, who openly advocated for NICE’s drug rationing agenda in a 2014 piece published at The Guardian.
Patients, especially those with rare diseases, are right to be opposed to a health care system that determines care based on QALYs. In a recent request for comments on the way NICE evaluates highly specialized technology and treatments, advocates for patients with rare diseases sent a clear message that NICE’s current evaluations are “not fit for the purpose.”
“Rather than unlocking innovation in the NHS and delivering equity and access to all patients,” said Steve Bates, CEO of the BioIndustry Association, “the proposed changes in the consultation will delay access to medicines and undermine confidence in the system for both patients and industry.”
Why does any of this matter for us patients here in the Colonies?
“Americans should understand how NICE works because under ObamaCare it will eventually be coming to a hospital near you,” the Wall Street Journal warned back in 2009.
That has come to fruition with the insurance industry backed Institute for Clinical and Economic Review. Last May, we introduced the comparison between NICE and ICER at our St. Louis media briefing on value frameworks.
At The Hill, Gayle Trotter, CEO of the American Womens Alliance, recently pointed to the direct link between ICER and NICE. Steven D. Pearson, the founder and president of ICER, served as a Senior Visiting Fellow at the National Institute for Health and Care Excellence — when he wasn’t working for the insurance industry’s lobbying organization, America’s Health Insurance Plans.
“The rationing board, known by the Orwellian acronym NICE, is a health care oligarchy that decides which drugs the UK government will cover,” Trotter writes at The Hill.
Last spring, former MLB pitcher turned professor Bob Tufts offered the best explanation of why there’s nothing NICE about ICER.
“I have a personal reason to abhor any cost-effectiveness program in the United States that proposes using QALY as a standard for care,” Tufts wrote. “In 2009 I was diagnosed with multiple myeloma. At the time that I was treated, most multiple myeloma patients were dying in one to three years. In the United Kingdom — the home of QALY based care — my novel treatment protocol had not yet been approved under their national health plan due to cost concerns and the statistical likelihood of its limited extension of a patient’s life.”
“If these rules had been in effect in the United States in early 2009, I probably would not have survived — and those that endorsed these theories would have surely been complicit in my premature death from cancer.”