Somewhat surprisingly, President Donald Trump’s
recent state visit to the United Kingdom sparked controversy over health care. At a press conference, Trump stated that “
everything is on the table” in negotiations regarding a post-Brexit trade agreement between the United States and the United Kingdom, including the country’s National Health Service (NHS). British politicians immediately responded with outrage. “Our NHS is not for sale,”
tweeted Labour opposition leader Jeremy Corbyn.
But as the mother of a child with cystic fibrosis, I know something else that’s not for sale in Britain: life-saving drugs.
For years,
the NHS has denied British patients battling this life-threatening genetic disorder access to a drug, Orkambi, created to treat the
underlying cause of cystic fibrosis.
The denials come not because the treatment does not work; the European Medicines Agency
approved Orkambi in November 2015. And in the United States, where the drug is available, those suffering from this ailment have seen
improvements in lung function and a
decrease in dangerous lung infections. Instead, Britain’s National Institute for Health and Clinical Excellence — which goes by the Orwellian name of NICE — has denied patients access to this treatment
on cost grounds alone.
In the United States,
private insurers and Medicare plans cover Orkambi generally. And some patients can work with outside assistance and grant programs to help cover out-of-pocket costs.
The chief commercial officer for Vertex Pharmaceutical (the company that makes Orkambi), Stuart Arbuckle, said that the
NHS has asked for a 90% discount comparedto what the German government pays for Orkambi. He noted — accurately — his belief that “the NHS is undervaluing the benefits these medicines can have for people living with cystic fibrosis.”
Hours after claiming that the NHS is not for sale, Labour leader Jeremy Corbyn also tweeted about Orkambi. He called for
greater access to the drug, saying “no child should be denied treatment because of the greed of pharmaceutical companies.” But the reality is, pharmaceutical companies will never invest money to create new treatments like Orkambi if bureaucrats impose arbitrary cost-based restrictions on access to care.
Last month, in
a report on single-payer health care, the Congressional Budget Office described some of the many problems that Britain’s health system faces.
CBO noted that a slowdown in NHS budget increases this decade “has created severe financial strains on the health care system. Provider payment rates have been reduced, many providers have incurred financial deficits, and wait times for receiving care have increased.” And British patients who have the same condition as my daughter cannot receive access to treatments that could save or extend their lives.
Speak to patients before supporting single-payer
Single-payer supporters who want to bring the NHS model to our country should talk to some of the
thousands of patients denied access through NHS to Orkambi. Better yet, they should talk to their parents and loved ones.
As a parent of such a child myself, I constantly give thanks for the range of treatments available to my daughter. In her case, she will soon start taking a newer drug manufactured by the
same company that produces Orkambi. That newer drug, Symdeko, is
similarly not currently covered by NHS. When the time comes, our insurance will cover the cost and we will be responsible for a monthly co-pay, with the option, like other CF families, to work with patient assistance programs. But I'm just grateful that these medications are available as options for us in the United States.
I couldn’t imagine the torture that some parents endure knowing that a government bureaucrat stands in the way of their children receiving life-saving treatments.
Britain can have its NHS all it likes. As for my family and me, we will celebrate the innovation that America’s health care system has created to keep my daughter as healthy as possible.
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