Monthly Archives: May 2015

When Web Pages Die (Yes. They Die.) and How To Save Them

120px-404_SymbolI came across a great article today in the online journal First Monday. This journal is always the source of a good, albeit scholarly, read.  I’ve been reading it for many years.

One of the articles in the current edition, Learning from failure: The case of the disappearing Web site, by Francine Barone, David Zeitlyn, and Viktor Mayer-Schönberger, caught my web-nerd eye.  It also sparked some memories of an Internet research project I managed way back in 1996-97; but more about that later.

Although it seems to be a universal truth that what you put on the web stays on the web, that’s probably a valid conclusion only for social media (Facebook, Twitter, and their ilk).  Studies have shown that links do die; and that there are many more than previously thought.  Sometimes even the data owners don’t know that their links are broken.

The First Monday article discusses the “Gone Dark Project” at Oxford University which addresses dead URL’s (Uniform Resource Locators) and the resulting “link rot.” The case studies discussed in the article can also “inform practical recommendations that might be considered in order to improve the preservation of online content.”

“We wanted to examine what has happened to Web sites, valuable archives and online resources that have disappeared, been shut down, or otherwise no longer exist publicly on the Internet.” (From the Introduction)

This article seems like the the polar opposite of the project I managed way back in 1996 and 1997.  Try to remember the Internet as it existed back then …

  • The World Wide Web was invented in 1989 by Tim Berners-Lee
  • The first graphical browser, Mosaic, was released in 1993.
  • There was no Firefox. (Version 1.0 of Firefox was released in 2004.)
  • Google was barely on the radar at that time. (First funding for Google was in 1998.)

(For more information, see Hobbes’ Internet Timeline. This decidedly old-school web page has been a favorite of mine since the mid-1990’s after I met the author at a work function. It’s still my favorite.)

So you see, it was truly the Dark Ages.  The contractors doing the work were using Yahoo!, Hotwire, and other tools available at that time to locate and catalog Internet resources.  The pool of information at that time was likely at least an order of magnitude smaller than what is available now.  Sites (or documents) didn’t go dark then so much as they didn’t ever see the light of day.  It wasn’t that items weren’t private, per se; it was merely (usually) that a unique URL had not been assigned to it.

The two studies are

At the time of these studies, there was a dearth of information available about the information revealed by these studies. I was very proud that, because of that fact, my contractors’ studies were both accepted to peer-reviewed journals, both in print and online.

But,  17 years later, I’m learning that things have come full circle.  In 1996, we were looking to discover what was new. In 2014, the ” Gone Dark Project” was looking for what has disappeared.

Plus ça change……

The High Cost of Being Sick in America

rxThis is a cautionary tale. I just happen to have first-hand experience with it; but I know this is only one example.

A couple of weeks ago a blog I follow posted an article about the high cost of disease-modifying therapies (DMT’s) for multiple sclerosis (MS). It confirmed for me that the drugs offered to (some) MS patients are priced exorbitantly and are often too expensive for MS many patients to afford and cited a New York Times editorial on the subject. (Read the comments; they are wonderful. Leftist and wingnut comments are sprinkled in; but for the most part, the outcry against Big Pharma and Big Insurance predominates.)

But, back to my story.

I was diagnosed in 1990 with Relapsing-Remitting MS (RRMS). For the first 3 years after diagnosis, there were no DMT’s available, only medications to manage any exacerbations (or “flare-ups”), of which I had a few. In the summer of 1993, the first DMT, Interferon-β-1b, or Betaseron™, was introduced. During production ramp-up, the company that produced it ran a lottery; when your number came up, you would get the drug. My number didn’t come up until early spring 1994. Then I began a years-long regimen of injections of the highest-cost drug I have ever taken.

Data point: My first months’ worth of Betaseron™ (15 doses), cost about $900. During the early years, the drug company had a plan that after 10 months, the next 2 months was free. I had health insurance through my employer, and the co-pay was very reasonable. (I think it was about $10.)

Fast forward to the “turn of the century.” In the early 2000’s, my insurance company started to use a “specialty pharmacy” to deliver my medication. Along about that time, I began to have visibility into the drug cost because the pharmacy included the cost of the drug in my “invoice.” I was astonished to discover that it was on the north side of $2,000. Per month! I was not surprised that my co-pay went from $10 to about $17, if I recall correctly. And, oh-by-the-way, the number of doses delivered went from 15 to 14.

Fast forward again to the 2010’s. The cost of the medicine slowly climbed, and was a little over $4,000 when the pharmacy stopped putting that information on the invoice. My co-pay also went up again, this time to $150. About 2 years ago I switched to an oral medication (Yay! No more injections!). My co-pay stayed the same. But, I don’t know how much the medication actually costs, because the pharmacy does not include that in the invoice.

A study of DMT’s for MS that was published in the journal “Neurology” indicates that the annual cost of the nine DMT’s on the market today is between $51,247 and $64,233! (By the way, the annual cost of Betaseron™ when it was introduced in 1993 was $11,532.)

The average annual cost of DMT’s at the time of their introduction has risen steadily.

  • The drugs introduced in the 1990’s (Betaseron™, 1993; Avonex™, 1996; Copaxone™, 1996) had an average annual cost of $9,516.
  • The drugs introduced in the 2000’s (Rebif™, 2002; Tysabri™, 2004; Etavia™, 2009) had an average annual cost of $24,646.
  • The drugs introduced in the 2010’s (Gilenya™, 2010; Aubagio™, 2012; Tecfidera™) had an average annual cost of $53,913.

The study in “Neurology” concludes:

“… the unbridled rise in the cost of MS drugs has resulted in large profit margins and the creation of an industry “too big to fail.” It is time for neurologists to begin a national conversation about unsustainable and suffocating drug costs for people with MS — otherwise we are failing our patients and society.”

I can’t help but agree. Some people with MS can’t afford their meds. I know some people for whom this is the case. Profit is good; but excessive profit is not, in my opinion. In all fairness, some drug companies offer prospective customers help with paying for their drug. This is a good thing; but is it also the recognition that the drug is priced too high?

Drug manufacturers bemoan the high cost of developing drugs and bringing them to market and say that the drugs are priced to recoup that cost. Well, at least for my first DMT – which was introduced in 1993, you may recall – they should have recouped their development costs in the intervening 23 years.

Both DMT’s (Betaseron™ and my current one) have been a godsend for me. Since beginning the therapy in 1994 I have not had an exacerbation. This speaks to the benefit of these types of drugs on my type of MS. I’m thankful that I have a health insurance plan that doesn’t cap my total drug costs. Yet.

This is just some food for thought regarding the price of MS therapies. The same price curve might apply for other drugs. Let me know.

Kent State: “Four Dead in Ohio”

kent_state_massacre(This post was orininally published in another blog I manage, SeeBee Sez.  I’m  repeating this quote today, the 45th anniversary of the shootings at Kent State. There have been shootings on campuses since then — too many of them, unfortunately.  The difference here is that representatives of the State — in this case, the State of Ohio, not other students or mentally unstable private citizens — fired on unarmed students.  This should be a cautionary tale for our nation. We should never forget the lessons of Kent State. The original SeeBee Sez post from 2011 follows. You can find more info about SeeBee Sez here.)

On this date in 1970, four Kent State University students were fired on and killed by Ohio National Guardsmen during an antiwar demonstration.  Twenty years after the event, a May 4th memorial was built at Kent State.  The words “Inquire. Learn. Reflect.” are inscribed at the threshold to the memorial.

Neil Young wrote the song “Ohio” after reading about the shootings.

For more about the events at Kent State, check here.