Indestructible
 

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The Fastest Sailboat in the World






By Ben Byer

I have a confession to make: I am addicted to television. It wasn't always this way. My past is filled with years in which I didn't even own the wretched box. But now I am a true red, white and blue slob passing between the NFL, MLB, CNN, Charlie Rose, Tavis Smiley, The Late Show, On Demand, NBA, MTP, ESPN, Comedy Central and occasionally some WWF to keep it interesting. My sins are compounded by my hypocrisy, as I limit my son to less than eight hours per week including movies. If he only knew. He probably does. But occasionally I am rewarded for my addiction in the same way a broken clock is right twice a day, like this evening as I took in an old standby, 60 Minutes.

After a sad story about elephant poachers, they turned to the great American pastime of watching obscenely wealthy people spend lots of money that we will never have. Now, to be fair, I got no beef with rich people. Many wealthy people have generously donated to our film . By many standards I am quite wealthy, living in a nice home with food on the table. But this is about true Wealth. The kind Chris Rock is referring to when he talks about the mother****er who owns the color blue. Venture capitalist Tom Perkins is that guy. He was on 60 Minutes showing off The Maltese Falcon, his football field-size sailboat, the biggest, fastest and most expensive ever built, probably costing him 200 million dollars, although he won't divulge the exact figure because he's embarrassed. As I said, I have no problem with this. I'm sure some seven year-old in western China was able to feed his family for a week by stitching the sailcloth. It's all connected.

But deeper into the story I realized that I, too was getting fist-****ed by Tom Perkins in a not-so-roundabout way. See, Tom Perkins made his first fortune as one of the founders of a biotech firm called Genentech, now the second largest in the world with annual profits of over 9.5 billion dollars. Lesley Stahl of 60 Minutes reported that Genentech has developed many drugs, including one for dwarfism. What she didn't report was how Genentech stuck its 9.5 billion dollar foot up the *** of me and every other ALS patient trying to survive.

Back in February, upon the recommendation of two of the world's leading ALS researchers, I tried a little-known human growth hormone called Iplex. Iplex was the brainchild of Insmed, a Virginia company that had improved upon an earlier version of this hormone developed by Genentech, the company the guy with the boat started. Both drugs were intended to help dwarfism in children; however there also had been many studies done with ALS patients and similar neurological conditions. Somebody thought it might help, and with no other treatment option it was worth a try.

Now, to be fair, I'm just some clown with a website who made a movie. But I tried Iplex (the improved-upon version). Within days I experienced rapid improvements in walking, speaking, appetite, swallowing and - critically - breathing. It felt like my body was under a seismic shift and Iplex was jolting the foundation of the disease. After trying more than thirty therapies over five years, I have a pretty good sense when something doesn't work. This was different. Accompanied by the enthusiasm from some extremely conservative researchers, the hard science backing Iplex and positive reports from other patients, I thought for a few days that I might have found the Holy Grail, and I wasn't even taking the full dose. Remember, there is not one effective treatment for ALS. The prognosis is paralysis and death within two to five years. Finding Iplex was like the Allies liberating Auschwitz. There is no other hope.

A few days after I started on Iplex, The New York Times reported that a settlement agreement had been reached between Insmed, the makers of Iplex, and Tercica, the licensing arm of Genentech. They accused Insmed of infringement on their patent for Increlex, the first drug (albeit drastically less effective by my personal experience). Iplex was to be withdrawn from the market immediately so as not to compete with Increlex, Genentech and the guy with the boat.

As part of the agreement, Insmed publicly announced they would continue to make Iplex available for ALS patients, recognizing their dire situation. After eight months of what is best described as begging, Insmed has yet to keep their word, depriving myself and every other American ALS patient of our only real hope for survival. In the meantime, they are providing it to every Italian ALS patient who wants it, paid for by their government. Clive Svendsen, a leading researcher from The Waisman Center at The University of Wisconsin has called the withdrawal of Iplex "a travesty," adding, "Patents should never trump human suffering. But this is modern America." (He's British, by the way.)

Rest assured, Genentech has tapped the lucrative ALS market in the US -six times larger than the dwarf market- of desperate, dying people willing to pay $7,000 per month for a second rate drug, including yours truly. At those prices just one third of the American ALS population brings in a billion dollars in annual revenue. So much for orphan disease status. By removing Iplex Genentech has monopolized the market on one of the most destitute, devastated and hopeless patient populations in the world with a drug that by my estimation is like trying to get drunk on cough syrup when there's a case of bourbon locked in the closet. Dr. Robert Brown of Harvard refers to ALS as "one of the most devastating diseases in the world of medicine." He is not alone in that assessment. But that's good old-fashioned American capitalism hard at work for you. I mean, somebody has to pay for the biggest, fastest, most expensive sailboat in the world.

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What Is Next For The Film?
alsfilm@gmail.com

There are some very commonly asked questions that we receive about the future of Indestructible and what is the next step for the film. Here are some of those answers.

What is happening with the film?
We are currently putting the finishing touches on the film (such as an original score) and finalizing all legal and licensing issues. We are also promoting Indestructible on the festival circuit, talking to distributors and finding new and innovative ways to show the film.

When will the film be available to purchase?
We anticipate a limited DVD release by early Spring 2008.

Where can I see it at a theater?
We are currently planning screenings in many cities across the US and Canada. We will keep you updated on our website and through newsletters of any upcoming screenings in your area.

Do you still need funding?
Yes, ALS Film Fund is funding this film and its current distribution strategy solely on contributions from generous supporters and we are still in need of donations.

Can I host a screening in my area?
Yes, you can! Please email alsfilm@gmail.com to put your name on the list and we will send you more information soon.

What else can I do to help?
You can forward this email newsletter, send people to our website, ask them to donate, and most importantly, tell everyone you know that ALS is not something to be taken lightly and it is everyone's problem. Together, we can all make a difference.


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