Ankylose This! Living with Ankylosing Spondylitis

Monday, December 14, 2009

Andrew George

Andrew George, Liberal Democrat MP for St. Ives, was first elected to the British House of Commons in 1997. -- what he calls "a milder case," which, given his ability to work as a member of Parliament for the past 12 years, is self-evident -- since he was a teenager. He's been campaigning for broader access to anti-TNF drugs and is a member of the NASS's panel of experts. He also says he's one of three British MPs with AS (he's not about to disclose the identities of the other two).

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Monday, November 30, 2009

Ankylosing spondylitis and work

The National Ankylosing Spondylitis Society conducted a survey of 324 of their members in August and September 2009. More than half of the respondents (54 percent) with severe AS identified their workplace as the part of their lives most affected by their disease. About a third (38 percent) said that they'd received advice on coping with work from either a health care professional or their employer, and around half said that their doctor had never discussed work issues with them. Press release.

I'm both nodding in recognition and disturbed by these results. I could say quite a bit about how AS has affected my own career prospects and my ability to work full or even part time. I was under the impression that much of the treatment we undergo was aimed in large part at getting us to stay in or return to the workplace (or, to put it another way: without treatment we would be unable to work). Does it say something about the quality and effectiveness of our treatment if so many of us are reporting work issues? If nothing else, managing workplace issues may be a missing link in the total care package.

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Saturday, September 05, 2009

The NHS on ankylosing spondylitis

England's National Heath Service has a multi-page guide to ankylosing spondylitis; it's now permanently linked on the sidebar, under "About AS." Meanwhile, BryanUK is one of seven arthritis bloggers on the NHS website: his first posts talk about his diagnosis and pre-TNF treatment, his first week on Humira (I didn't know you had to avoid certain foods!) and family support.

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Monday, November 12, 2007

NICE to AS patients: No Remicade for you!

Britain's National Institute for Health and Clinical Excellence (NICE) has made a decision that restricts access to anti-TNF therapy by patients with severe ankylosing spondylitis, and the National Ankylosing Spondylitis Society (NASS) isn't happy about it. Only two out of three biologics will be accepted for use against ankylosing spondylitis: etanercept (Enbrel) and adalimumab (Humira), but not infliximab (Remicade). And Enbrel and Humira cannot be used sequentially -- which is to say that if you try Enbrel and it doesn't work, you can't then try Humira. And if neither works, you're SOL for Remicade. Cost is being cited: Remicade is more expensive to administer (since it can't be self-injected). See coverage from Channel 4, the Daily Mail, and This Is London.

As anyone with chronic inflammatory arthritis will tell you, it's impossible to tell what treatment will work in advance: I'm on naproxen, but I know AS patients who can't tolerate it; I know people who use indomethacin, but couldn't handle it myself. To have only one shot at anti-TNF therapy may make sense from a cost perspective, but it's lousy from the perspective of the person actually suffering from the disease.

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Friday, August 03, 2007

Hydrotherapy pool closure affects AS patients

The closure of the hydrotherapy pools at Southampton General Hospital due to staffing shortages has drawn a stiff complaint from the director of the National Ankylosing Spondylitis Society: Jane Skerrett argues that hydrotherapy pools make "a major contribution to people living with this disease." The Southampton pools have been closed for two months.

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Newcastle AS study

A Newcastle University researcher is carrying out a study on young people with ankylosing spondylitis; "[p]atients with ankylosing spondylitis (AS) who attend the Freeman and North Tyneside Hospitals in Newcastle, Queen Elizabeth Hospital in Gateshead, and Wansbeck Hospital in Ashington will be asked to participate." The story is vague about the parameters of the study, but it appears that education is at least one focus.

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Saturday, June 23, 2007

Bryan Gunn

A profile of Bryan Gunn, who, despite being diagnosed with ankylosing spondylitis at age 28, continued to play football/soccer for the Norwich City Football Club until he was 35.

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Wednesday, June 13, 2007

Pharmaceutical triage in the UK

We've heard before about the difficulties British ankylosing spondylitis patients have had trying to get coverage for the latest (and presumably greatest) treatments, the expensive TNF-alpha blockers. This BBC News article affords some insight into the process by which an individual patient can have such treatments approved -- or denied:

The first business is two requests from patients with a painful rheumatic disease, ankylosing spondylitis.

They want drugs which cost £11,000 a year, but haven't yet been given the seal of approval by the health watchdog, the National Institute for Health and Clinical Excellence (NICE).

Other local patients might be eligible -- so the question is: are these exceptional cases?

"For a PCT our size, I guess we're looking at anywhere between 250 and 500 cases who may potentially benefit from this drug," said the public health director.

Another panel member said: "The doctor who's presented this says the severity of this patient's symptoms is unusual -- but that's not the same as exceptional.

"I guess for me it's the uncertainty about how this drug will affect this patient. Funding it would be a speculative move -- given the evidence we've got here."

Both requests are turned down.

It's worth noting that biologics are usually indicated when more conventional treatments are ineffective. The whole lot of us aren't going on Remicade, and many of us, I suspect in my limited and unqualified way, won't ever need to.

Previously: Postcode lottery for TNF-alpha in the UK; AS and prescription drugs in Scotland.

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Saturday, May 05, 2007

Celebrex approved for AS in Britain

As a result, I think, of the European Union's approval of Celebrex (celecoxib) to treat ankylosing spondylitis, the drug has now been granted a label extension for treating AS in the UK, Pfizer announced in a media release yesterday.

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Monday, April 30, 2007

Yet another TNF-blocking happy ending

The Salisbury Journal has another one of those articles about an ankylosing spondylitis patient who, having taken Remicade (infliximab), has made a dramatic turnaround: "After I had the treatment, I was out of the hospital like an athlete, I was told it could take several weeks to work but it was amazing and worked straight away," the article quotes the unfortunately named Mark Weakly. "It's like a miracle cure."

As you may know, I've seen a lot of stories like these in the British press.

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Monday, October 02, 2006

Ankylosing spondylitis in the Times

Dr, Thomas Stuttaford, whom we last saw in a June 2005 writing a Times article about TNF-alpha inhibitors, is back in the Times with an article about ankylosing spondylitis -- and the effectiveness of the new TNF-alpha inhibitors in treating it. (I sense a trend.) Talks about the drugs' use and availability in the UK and mentions which pharaohs had AS, so it's a pretty broad-ranging article.

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