Ankylose This!

Ankylosing spondylitis and work

2009-11-30T15:47:00.004-05:00

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.

Medical News Today on uveitis

2009-10-06T12:34:00.001-04:00

Medical News Today has an article today on uveitis, one of the more commonly encountered peripheral symptom of ankylosing spondylitis (and, fortunately for me, one I haven't experienced yet).

SAA training video for emergency first responders

2009-09-18T18:41:00.003-04:00

Those of us with ankylosing spondylitis dread getting into an accident: our spines are more fragile and less flexible, and we're at greater risk of spinal fracture or spinal cord injury. To that end, the Spondylitis Association of America has put together a training video for emergency first responders setting out the special needs of patients with ankylosing spondylitis. Press release.

AS forum in Victoria, B.C.

2009-09-18T17:07:00.004-04:00

An ankylosing spondylitis forum hosted by the Arthritis Society is taking place in Victoria, British Columbia on Thursday, October 1, between 2:00 and 4:30 p.m., at the Victoria Arthritis Centre on 2680 Richmond Road (map). Event listings here (scroll down) and here. Free to attend, but you must register in advance.

The NHS on ankylosing spondylitis

2009-09-05T10:13:00.003-04:00

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.

Man with Ankylosing Spondylitis on Bill Moyers' Journal

2009-08-21T21:41:00.002-04:00

This evening's episode of Bill Moyer's Journal featured several Americans struggling with serious health conditions for which they couldn't get adequate treatment because they lacked health insurance. One of them, Carlos Benitez, had been struggling for years with back pain that he was trying to treat with over the counter pain meds. The medications were causing bleeding into the stomach, and his blood loss was so great that he had to be hospitalized and transfused. He was hunched over, had limited neck mobility and had lost seven inches in height. Of course, the minute I saw him, I recognized that he had ankylosing spondylitis, and the diagnosis was confirmed by the doctors that he was able to see as a result of his participation in the documentary.

What surprised me was that the doctors immediately started talking about surgery. he could still drive, and he had some neck mobility. After exploring surgery options in Mexico, he was able to get spinal surgery for free as a result of the documentary. The physicians were able to restore four inches of his height, and he was pain-free several months later.

The structure of the documentary didn't allow them to go into a lot of detail about life with AS. I worry that it left the impression that surgery is a cure. But it was interesting to finally see someone talking about AS on national TV.

Health Canada on TNF blockers and cancer in children

2009-08-20T20:55:00.005-04:00

Further to this earlier post, Health Canada has issued a safety update on TNF blockers and cancer in children and young adults. (Disclaimer: I work for Health Canada, but only in the correspondence unit.)

Chinese herb better than sulfasalazine

2009-08-19T06:56:00.006-04:00

A new study suggests that extracts from a Chinese medicinal plant, Tripterygium wilfordii, may be more effective in treating the symptoms of rheumatoid arthritis than sulfasalazine. While sulfasalazine may not be the first drug that comes to mind for inflammatory arthritis, I was on it for a while myself (when I was trying a few different treatments). Since the treatments for RA are usually directly applicable to ankylosing spondylitis, this may well have some implications for how our disease is treated down the road. The analogy that comes to mind is willow bark and acetylsalicylic acid (Aspirin).

New SAA Website

2009-08-15T06:45:00.002-04:00

The Spondylitis Association of America announced this week that they've redesigned their website. Not bad.

FDA links TNF blockers to cancer in children

2009-08-07T10:55:00.006-04:00

The U.S. Food and Drug Administration is requiring that TNF blockers have a warning added to their labels indicating an increased risk of cancer in children. "An analysis of U.S. reports of cancer in children and adolescents treated with TNF blockers showed an increased risk of cancer, occurring after 30 months of treatment on average. About half of the cancers were lymphomas, a type of cancer involving cells of the immune system. Some of the reported cancers were fatal." More information from Newsday, the Wall Street Journal and WebMD.

Generic versions of biologics?

2009-08-03T10:52:00.004-04:00

While there are generic equivalents of many chemically based drugs that cost patients a fraction of the brand-name cost (thanks, I suppose, to the original drug patents expiring), this is not the case for the high-cost biologics -- like Enbrel, Humira and Remicade -- that many of us are turning to for relief. That high cost is raising the question of how long brand-name biologics can be exempt from market competition from "biosimilar" or "biogeneric" drugs -- especially in the U.S., where the high cost of drugs and cost containment are a crucial part of the health coverage debate. The Chicago Tribune has the story.

Public-awareness campaign for AS launched in Ireland

2009-06-24T12:20:00.006-04:00

When your disease isn't that well known, it can be a little annoying to witness public-awareness campaigns for diseases and conditions of which the public is already much more aware than yours. So it's with some interest that I note the launch, by the Ankylosing Spondylitis Association of Ireland, of a public-awareness campaign for ankylosing spondylitis in Ireland (naturally enough). The campaign is called Get Your Back Up; the URL redirects to the Association's website.

Golimumab approved in Canada

2009-04-14T07:21:00.004-04:00

I'm trying my best to step back a bit from the steady stream of news coming in about TNF-alpha blockers (i.e., biologics), because it can drown out everything else about our disease. But I have a selfish interest in the news that golimumab, which now has the trade name of Simponi, has been approved in Canada for the treatment of rheumatoid arthritis, psoriatic arthritis, and ankylosing spondylitis; it's apparently to be used in combination with methotrexate, and, like other biologics, it's indicated for AS when conventional (i.e., affordable) therapies have failed.

Previously: Golimumab and ankylosing spondylitis.

People with AS in the news

2009-02-18T18:03:00.003-05:00

Thanks to etanercept (Enbrel), 45-year-old Andrew Hodgkinson, a Briton who has spent more than two decades with ankylosing spondylitis, trekked to the Mount Everest base camp last November: Birmingham Mail, Daily Mail.

In May, 37-year-old venture capitalist Vineet Buch will compete in the 2009 Molokai Challenge surfski race in Hawaii; Buch has had AS for 16 years.

British footballer Bryan Gunn, who continued to play for the Norwich City football club for years after being diagnosed with AS (see previous entry), has now been made manager of the club: Eastern Daily Press; Evening Star; Scotland on Sunday.

Calgary Herald: Using MRI to diagnose AS, plus more

2009-02-14T09:05:00.003-05:00

A Calgary Herald article ostensibly about using magnetic resonance imaging (MRI) to speed up the diagnosis of ankylosing spondylitis -- most of us apparently go between seven and 10 years before being properly diagnosed -- also goes on to talk about ankylosing spondylitis in general, its symptoms and effects, and its treatment. It points out that the young men who predominantly come down with the disease are the least likely to seek treatment and the most likely to suck it up, and explicitly mentions the big money behind biological response modifiers (i.e., TNF alpha blockers, biologics, etc.). Worth a read, especially for people needing an introduction to our disease.

B.C. drug plan to cover TNF drugs for AS

2008-03-05T20:33:00.004-05:00

The Vancouver Sun reports that British Columbia's provincial prescription drug plan will cover adalimumab (Humira), etanercept (Enbrel) and infliximab (Remicade) for patients with ankylosing spondylitis who meet the criteria of the plan's Special Authority program.

Update, March 8: Reaction from the Arthritis Society, which says that they and others have been lobbying the government for this decision for years.

Quack cures for arthritis

2008-03-02T19:50:00.001-05:00

About.com: How to spot a quack cure for arthritis.

Saskatchewan approves Enbrel, Humira for AS

2008-02-21T20:00:00.004-05:00

Amazing what a change of government does. Saskatchewan's provincial drug plan now covers Enbrel and Humira for ankylosing spondylitis under Exception Drug Status coverage.

Update: CBC News coverage. Remicade wasn't approved because it costs more.

Previously: More about Saskatchewan's TNF coverage; Saskatchewan to AS patients: No biologics for you!

ACE demands biologics coverage for Aboriginal Canadians

2008-02-15T21:55:00.008-05:00

Fresh from going after Saskatchewan for its refusal to cover biologics for AS, Arthritis Consumer Experts is now turning its attention to the drug coverage provided to Aboriginal Canadians by the Non-Insured Health Benefits program of Health Canada's First Nations and Inuit Health Branch. Noted without comment -- I'm presently working on contract at Health Canada.

More about Saskatchewan's TNF coverage

2008-01-26T09:25:00.000-05:00

A follow-up article from the Regina Leader-Post on Saskatchewan's coverage of biologics -- they're covered for rheumatoid arthritis, two out of three are for psoriatic arthritis, but none for ankylosing spondylitis -- suggests, as an aside, that the newly elected Saskatchewan Party government may reverse the earlier decision not to approve coverage for AS. Indeed: why should our disease be treated, pun intended, differently?

Previously: Saskatchewan to AS patients: No biologics for you!

Living with arthritis

2008-01-12T06:56:00.001-05:00

Ida Weibel's personal essay for Newsweek's Web site, Living with Arthritis, is a must-read: even though she' spent 10 years living with rheumatoid arthritis and not ankylosing spondylitis, anyone with a chronic debilitating illness will recognize her experience. This passage, for example, is just as relevant to us:

When RA patients complain about their illness, few understand or acknowledge their suffering. Every adult has experienced a painful elbow, knee, finger, or some other joint that interferes with physical activities. But people can be dismissive of our chronic problems because RA isn't life-threatening and may seem less serious than some other diseases. Those with rheumatoid arthritis, especially those with severe symptoms, are often silent and solitary sufferers.

Via About.com Arthritis.

Europe approves broader use of Remicade for AS

2008-01-12T06:50:00.001-05:00

Label enhancements for infliximab (Remicade) have been approved by the European Commission for ankylosing spondylitis, Crohn's, and psoriatic arthritis, according to a press release: "The ankylosing spondylitis (AS) label indication has been broadened to include adults with severe active AS who have responded inadequately to conventional therapy. The label also includes a significant improvement in physical function and quality of life."

Nor New Zealand

2008-01-03T15:36:00.000-05:00

Pharmac, New Zealand's state pharmaceutical plan, covers TNF inhibitors for rheumatoid arthritis, but not for ankylosing spondylitis or psoriatic arthritis. On its face, this looks less like pushback against the high cost of TNF blockers and more like taking a long time to approve it for diseases other than rheumatoid arthritis (which is usually the first disease these things get approved for).

Alberta won't cover biologics either

2007-12-22T21:40:00.000-05:00

It's not just Saskatchewan: Alberta's public drug insurance plan refuses to cover biologics for the treatment of ankylosing spondylitis, the Calgary Herald reports. The issue forming up is the need to keep skyrocketing drug expenses under control versus the need to provide effective treatments for crippling, chronic illnesses. (It occurs to me that if a $15,000-a-year treatment is the difference between someone working and not working, it's money well spent.) In a letter to the editor, Ken Mulholland argues, "I realize that these drugs are very expensive, but how is it that provinces like Ontario and Quebec have approved their use while Alberta, with all of its wealth, can flatly deny sufferers within its borders?"

Saskatchewan to AS patients: No biologics for you!

2007-11-14T19:30:00.001-05:00

Meanwhile, a Canadian arthritis lobby group is fulminating against the Saskatchewan government, which last month decided against listing three TNF blockers -- presumably the big three, Enbrel, Humira and Remicade -- for the treatment of ankylosing spondylitis. This isn't about prescription drug coverage, says the group; it's about access, pure and simple: "As a result, people living in Saskatchewan with this inflammatory disease have absolutely no access to biologic medications to manage their disease." That seems a bit much. No access at all?

Update, 11/15: CBC News has more, including the Saskatchewan Formulary Committee's rationale: their position is that "the clinical benefit does not justify the incremental cost of these drugs." As a result of last week's provincial election, there will shortly be a change of government in Saskatchewan, so this decision may well be reversed.

Update, 11/18: More coverage from the province's main newspapers.