Public-awareness campaign for AS launched in Ireland

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

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

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

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

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

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

Saskatchewan approves Enbrel, Humira for AS

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

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

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

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

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

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

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!

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.

Humira and uveitis

Researchers from the RHAPSODY study, which is examining the efficacy of adalimumab (Humira) on ankylosing spondylitis, report that the incidence of uveitis is markedly reduced among patients receiving the anti-TNF treatment.