Another profile of an AS sufferer; this time, Salt Lake Tribune has a story about local businesss manager Michelle Higham, who nevertheless manages to stay active. I note with interest that she plans to write a book about a girl with ankylosing spondylitis (she was diagnosed at 16).
In the context of adalimumab's approval for AS in Europe, the results of a one-year study are worth noting: Abbott, adalimumab's manufacturer (as Humira), reports that in a one-year clinical trial, nearly three-quarters of patients with ankylosing spondlyitis responded to treatment with Humira by the end of that year. Press release (Yahoo! News); RTTNews; Associated Press (Houston Chronicle).
Having lived with AS for 20 years, I've grown fairly accustomed to the precautions I have to make when I travel. When I'm going to an unfamiliar place, I often call the airline or rail line I'm using to arrange for a wheelchair so that I can avoid long and tiring walks to baggage claim or through large terminals. If I think I need it, I arrange for an accessible hotel room. When I used a wheelchair some years back while waiting for my hip replacements, I always checked the accessibility of my routes and destination in advance.
I've generally had very positive experiences as my job has required me to travel all over the country in recent years. Airport, train, hotel and bus personnel have been supportive and helpful, in general. But yesterday I had an experience that made me realize that I was getting just a little complacent.
I had an errand to run that caused me to go Philadelphia's Holmesburg Junction station, a stop on the R7 commuter line that runs between Philadelphia and Trenton, New Jersey. SEPTA, the agency that operates the station acknowledges that Holmesburg Junction is not on its list of accessible stations for that route, and this picture makes part of the reason clear: you have to be able to climb steps to get to the platform, at least on the northbound side.
Yesterday, around high noon on one of the hottest muggiest days so far this summer, I climbed the steps with relative ease and was prepared to board my train. As this image shows, because the platform is low relative to the train, even able-bodied passengers have to use handrails and a wooden step to get on or off. Earlier in the day, I had successfully disembarked from a southbound train at the same station.
However, when I stepped on to the wooden step to get on the northbound train, I found that I could not get my foot up on the bottom step of the train. I asked the conductor whether he had a stepstool. He said, "This step [that we were standing on] is all they give us." I tried again to get my leg up to no avail. I asked the conductor whether he could help me, thinking that if he could brace me, I could use my arm strengh to hoist myself on to the step in some way. He stared at me. Finally he said, "Make a decision; I've got to go." I said, "What can I do? I can't get on the train?" He said, "Call Para-Transit" -- assuming, I suppose, that I knew what that was or how to take advantage of this service. "I'm stranded," I said, backing away from the train. He just looked at me, hopped aboard, and the train left.
There was no ticket office; there was not so much as a telephone posting a number that one could call for help. Fortunately, I have family in Philadelphia and this is the age of cell phones, so I was eventually rescued. I also happened to have a bottle of juice with me so that I could keep myself hydrated as I waited in the heat for help to arrive. But I had plenty of time to wonder what would have happened if I had not had those resources? And is a stepstool such an unreasonable thing to ask for? After all, SEPTA's guidelines for disabled passenger state that people who can stand, "can request to use ramps or lifts for boarding."
Have others run into this problem? What did you do?
Maybe you've heard how some people with ankylosing spondylitis reported that anti-TNF therapy seemed to lose effectiveness over time, or maybe you're wondering how these hella-expensive new-fangled treatments will perform in the long run. A German study into the use of infliximab (Remicade) to treat AS suggests that it might well be an effective long-term treatment: "At the end of the five-year study, ... nearly 60 percent of patients initially enrolled in the treatment-phase of the trial were still being given infliximab, 34.1 percent of which were in complete remission without any major side effects reported."
Update, June 23: UPI coverage of this story.
Prescription drug coverage varies from country to country, and within countries at all: some of us get it through work, some of us through the state, and some of us not at all. For a chronic disease like ankylosing spondylitis, prescription drugs are almost never an optional expense: they determine whether we can function -- work, move, sleep -- or not. As part of its campaign to extend prescription drug benefits to people with chronic illnesses, The Scotsman profiles 56-year-old Pat Byrne, whose wife must pay £95 a month in prescription drug costs to prevent ankylosing spondylitis from putting him in a wheelchair. From the article: "Mr. Byrne believes it is unfair that someone on income support but physically able to work can get free prescriptions, while a disabled person unable to work must pay."
The Scotsman, which has reported on former snooker player Chris Small and his battle with ankylosing spondylitis before, now reports on a testimonial dinner and fundraising auction on his behalf. Various celebrity tchotchkes are being auctioned to raise funds to help him support his family; they're hoping to raise £20,000.
See previous entries: AS and sports; Chris Small; Chris Small update.
Update, July 15: More from the July 8 edition of the Edinburgh Evening News.
Apropos of the TNF inhibitors, I recently came across a book about them that was published in 2004: Arthritis Without Pain: The Miracle of TNF Blockers, by Scott Zashin with Laurette Hesser. I'll probably have to have a look at it.
I don't know. I've now seen so many stories about people with ankylosing spondylitis suffering for decades in pain until they encountered the miracle that is TNF-blocking biologics that I'm starting to get suspicious -- not of the efficacy of the treatment, nor of the veracity of the stories, but of where the stories are coming from. I just can't help but wonder whether there's a PR campaign under way. Anyway, the latest to follow the formula is this Father's Day story from Wales on Sunday.
The Scotsman profiles Campbell Barr, who was diagnosed with ankylosing spondylitis 10 years ago, at the age of 53. He was forced to retire as a result, but Barr lives an active enough lifestyle that his symptoms, at least as far as the article makes them out, appear to be minor. It's interesting to see someone diagnosed in their fifties -- long past the age at which most of us are diagnosed. I would have thought it impossible. Shows what I know.
A story from the Hexham Courant. First diagnosed with juvenile arthritis at age 13, Stephen Blackburn spent 26 years in pain before he was finally -- and properly -- diagnosed with ankylosing spondylitis. Now on Enbrel (etanercept) after his doctor fought to get his prescription covered), for the first time in decades he's no longer in profound discomfort.
Canada's Sun newspaper chain has been surprisingly good at covering ankylosing spondylitis, usually through the prism of a local person afflicted with our fun disease (see previous entries: 1, 2, 3). Today's Edmonton Sun adds another one, with a look at a local resident with a profoundly severe case, 37-year-old Gian Carlo Grande. To put it bluntly, he's not in good shape, even by our standards: unable to find work, single, worn out by daily tasks.
But I think the article's count of 400,000 Alberta residents with the disease is a typo: that'd be more than one in 10 people. (If that were the case, I think my supervising professors at the U of A would have been more familiar with, and sympathetic to, my condition than they were.) It's probably closer to 40,000.
European regulators have now given Abbott Labs permission to market Humira (adalimumab) as a treatment for ankylosing spondylitis: Business Week; TradingMarkets.com. The FDA is still reviewing the application in the U.S.
See previous entries: Adalimumab (Humira) and ankylosing spondylitis; More about adalimumab; Humira recommended for AS in Europe.
Update, June 8: Chicago Tribune.
Ankylose This! is a group blog about life with ankylosing spondylitis. Its authors post about their own experiences, medical news, and useful resources.
Disclaimer: None of us are doctors, and nothing in this blog should be construed as medical advice. We are simply patients trying to make sense of our disease.
