Shattered Life: Ex-British MP and Longtime National Health Service Supporter Denied Sight-Saving Drug

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Posted: Sep 01, 2009 2:54 PM

Another tragic example of government health care highlighted by the National Center for Public Policy Research in its new book, Shattered Lives: 100 Stories of Government Health Care

Ex-British MP and Longtime National Health Service Supporter Denied Sight-Saving Drug

To save an arm, a leg or even an eye, would you rethink deeply held principles?

This was the dilemma that faced the decidedly left-wing former Member of Parliament, Alice Mahon.  Mahon was going blind because of a decision by the government-managed National Health Service, which she had long supported as a member of the Labour Party, Britain’s traditionally left party that launched the NHS in 1948.

Mahon suffers from the ‘wet’ type of age-related macular degeneration (ARMD).  The condition requires early treatment because it progresses rapidly, resulting in severely impaired vision and possibly blindness. Mahon thought she was fortunate because doctors in November 2006 prescribed to her a newly-available drug in the United Kingdom, Lucentis, to treat her eyes.  Clinical trials showed the drug to be effective at stabilizing vision loss and even reversing damage.     

But, unhappily for Mahon, at that time government funding for Lucentis had not been approved.  In hopes of speeding up the process, Mahon sent an urgent application to an “exceptional circumstances” review committee through her local health authority, Calderdale and Kirklees Primary Care Trust.  But it took nine weeks from the original application date for the committee to turn down funding Mahon’s prescription, the cost of which would be 12,000 British pounds (~$19,500) for a year’s treatment.

As Mahon explained, “I was given two reasons for the refusal – firstly, the treatment I need has not been approved by NICE [National Institute for Health and Clinical Excellence – the clinical standards body], and secondly, it has not been proven to be effective.  Neither reason stands up to scrutiny.”

[# More #] Meanwhile, during the lengthy review process, Mahon lost much of her sight in one eye.  Fearing irreversible vision loss, she began treatment on her own, that is, with her own money. Though Mahon and her husband could afford to pay for treatment using their retirement savings, the thought of buying private health care was outlandish to her.

“It went against every principle of mine to consider private health care,” said Mahon. “Everyone has a right to free treatment on the NHS for a condition that results in blindness and devastates lives.”

Mahon continued, “[M]y husband Tony was all for me going private… but I refused...  I’d been a [Labour] party member since 1957.  My grandfather was a founder member.  This was my NHS: I had been its champion all my life and it would not let me down.  How I regret that proud stance now.”

Yet, having few viable options to save her vision, Mahon purchased private care.  By the end of January 2007, she had spent ?5,325 (~$8,700) on treatment. Says a distressed Mahon, “I have been an ardent supporter of the NHS all my life, and now feel totally let down.  The excuses… for not funding treatment are scandalously lame.”

Mahon contemplated suing the NHS, but she did not proceed because, finally, health officials agreed to pay for Lucentis.  Yet it appeared other, less politically-connected sufferers of ARMD were not as fortunate as Mahon.  According to policy, to receive Lucentis through the NHS, patients must already have been blind in one eye and show deterioration in the other eye.

NICE reversed this policy in 2008 to permit NHS funding for the first 14 injections of Lucentis as soon as wet age-related macular degeneration is diagnosed in one eye.  The drug’s manufacturer, Novartis, will pay for any additional doses under the new guidelines.  According to the Daily Mail, it is believed that some 20,000 patients lost their sight during the two-year review considering new guidelines. 


Purchase or download a free PDF of The National Center for Public Policy Research's new book,
Shattered Lives: 100 Stories of Government Health Care, for more on the way waiting lists affect the lives of people living in countries with government-run medicine.  You can download it today for free at http://www.nationalcenter.org/ShatteredLives.html .