So, I've said many times that I want to save people that are going through this some headache, heartache and potentially some money. I have had a long time to think about this post. I have hesitated, because generally, I try to stay positive in my posts here, but I felt like our experience with Mindy Goodin at Creek Trail Medical Clinic in Colorado Springs, CO was worthy of a post. I wrote this post several days ago. Since then I've considered many things, but at the end of the day, my beef is justified. My questions are logical and my motivation is not coming from a place of anger. Mostly i'm mystified and confused. I'm also disappointed, and you will see why below.
I've also trusted this post, in advance, to people in the ALS community that I have met through my outspokeness about these issues and the resounding message was essentially that I "have" to post this, for the benefit of others. So know that I don't do this out of anger or personal rage, but out of hope for answers and hope for perspective, both for us and for others who may have had the same, similar or might have the same experiences.
I'll write this as an open letter in order to give her an opportunity to respond publicly. I imagine that eventually, someone will make her aware of this post. I will try to state the facts as I know them. If anyone has a great success story from their treatment from Mindy, please feel free to post it here as well. I'm asking questions that I feel need to be asked, and I feel that the public should be aware of our experience.
Dear Mindy,
We were desperate to find someone who would listen to our suspicions about Lyme disease. We had tested positive for a few "titers" and a few co-infections for the disease. As it turns out, these labs are famous for positive results. Lyme disease sucks worse than most diseases, but it represents hope, believe it or not, for people that have been diagnosed with ALS. You gave us hope. You "believed" that H had Lyme disease and some co-infections and you were willing to treat it.
You had worked with Dr. Martz, who "cured" himself of ALS by treating Lyme disease. He retired and you opened your clinic. You are a PA, who practices your medicine under an MD, who we never met and who probably rarely comes into the office. He's doing "research" on this, right? What's his name? Dr. Harvey? Never met him. Do PA's generally get $700 for an initial session and $225 an hour? I don't know. Seems a bit pricey to me. My work generally saves companies millions of dollars and I bill my services directly at $200/hr. But then again, what price can you put on "potentially" saving someone's life?
Well, H went under minor surgery at your recommendation to get a Groshong Catheter so she we could "easily" administer IV antibiotics here at our home. We bought literally thousands of dollars of antibiotics and other medications from the pharmacy you recommended that is right next door to your office because "you are comfortable with them and they know how you want the meds prepared." We took them "religiously" for about 6 months.
We were stuck in our house for hours every day waiting for the drips to go into H's veins. When we started, H could walk a bit. When we finished she couldn't. Open meds required refrigeration, sanitary conditions were paramount. We adopted out (gave up) our cats. We could have gone on trips. I feel like we wasted a whole summer, and being honest, I'm angry about that because time is our only valuable commodity now.
Why did your main practicing nurse quit the week after she trained us on how to service the IV's? She was really nice, I liked her. She's really the reason that I advocated us going on your plan in the first place. It's not like you came across as the warmest person in the world at our first meeting. She was the one we bought in to, not you. So, why did she leave? I was wondering about that. Probably a good reason, but I'm curious. Maybe she'll find this and post. Penny, right?
All the time, H is in decline. Who knows..maybe it's slower than it would have been had she not been on the antibiotics. Who knows really? Isn't that convenient for you?
The emotional toll is enormous, so she goes on anti-depressants, two of them to be exact. Both of the labels say "do not discontinue this medication without Dr. supervision." or something close to that. You are perscribing these drugs. They are nothing to play around with, right?
A couple of months later, H has a breakdown and we come see you for an emergency consultation which you make time for, on a non-office hours day. Practically an intervention. Doses of drugs are increased. Tolerance is assessed. Tears are shed. I lay my heart out on the table and you pick it up and show it to H as a reason why she should not take herself out of the game. Figuratively of course, but this was the essence of the meeting. I've been through some serious shit in my life, this was about as serious as it gets.
Did you use me to keep a paying patient? (That's how I feel today)
About a month later we express some question regarding a "pulsing" strategy that some recommend with regard to long term antibiotic therapy to treat chronic lyme or other co-infections. H is on, I think 5 of them altogether. 3 of them IV and most days 3 hours spaced out over the day. Side effects can be adding up...we don't know really, but H is not feeling good, and definitely not feeling better.
We call to talk about this pulsing idea, and you tell H "You need to pick a pew and sit in it." Apparently you don't like anyone else's ideas about treatments. hmmm..pick a pew, like in a church? Are you God? We take a seat back in your pew for a while...
Later, H calls to tell you that we want to take a break from the antibiotics. It is a gut wrenching decision, but it is hard to do this every day, it is expensive and it does not seem to be working. Your assistant takes the call. You never call us back. Not once. To be clear, H didn't say quit, she didn't say we didn't believe in what you were doing and perscribing, she said "break." If you were not clear on that point, you would have been clear on that if you had bothered to call.
The next day or two an antidepressant is running out and we call to re-fill. You have already instructed the pharmacy to discontinue ALL prescriptions for H. ALL of them.
You know how depressed H is. You know that stopping anti depressant medication immediately can cause massive harm and suicidal tendencies. You did it anyhow. Were you mad at us? Were you disappointed? You already knew she was on the edge when she was ON the medication. What did you think would happen? After six months and all we went through with you did you care at all?
I am open to your response to any and all of the above questions. You probably have my number in your files. If you don't then that is also negligent.
You deal in human life every day. We deal with it in the context of our family. I don't want to be another number to you or a + sign in your ledger without regard to our reality. This is what disturbs me. You never called. It seems like you never cared, or really had any hope. I am very well aware of this, acutely aware of it, one might say. I don't fear the truth. In fact, I fear nothing.
Here's an example of justice:
http://blog.nj.com/ledgerupdates/2007/09/nj_doctor_draws_prison_term_in.html
57 months will give that person some time to think about it.
This is your chance, before I get really mad.
Thank you,
Bill
Friday, March 27, 2009
Wednesday, March 25, 2009
Shawshank and Hope
So, after so many of my friends on FB and in general have picked The Shawshank Redemption as one of their favorite movies of all time, we decided to buy it on PPV last night. Wow, what a film. Raw and uncompromising in many areas and not an endorsement of the prison systems during the period. That being said, it is an amazing story, well written, well acted, directed and the cinematography was amazing. I have always liked Morgan Freeman and Tim Robbins as actors (though I wish Tim would shut up about his politics.) Both did a stellar job in this movie.
If you have not seen it, or have not seen it recently, obvoiusly highly recommend it.
What I took as the core message from the film was the theme of "hope." I won't ruin it for you, but essentially The TR character "Andy" believes in hope as his salvation and the MF character Red feels that Hope is something that is a killer in Prison, especially to lifers as both of them are.
Hope is something that in my opinion that you have to hold on to, no matter what "they" tell you. Life without hope really is not living, it's more like dieing. Your vision of hope can change. You can always hope for something else.
With ALS, it seems like the first thing the Neurologists try to do is take hope away. They are the MF character. Not antagonistic, often very kind, very "understanding." They don't "wish" this on you. But they don't offer hope either. The TR character Andy knows that deep within him, no matter what happens to him (and boy do some awful things happen to him) he knows that there is a place that they can't touch, and that is his hope.
So let's all try to not lose that!
Peace,
B.
If you have not seen it, or have not seen it recently, obvoiusly highly recommend it.
What I took as the core message from the film was the theme of "hope." I won't ruin it for you, but essentially The TR character "Andy" believes in hope as his salvation and the MF character Red feels that Hope is something that is a killer in Prison, especially to lifers as both of them are.
Hope is something that in my opinion that you have to hold on to, no matter what "they" tell you. Life without hope really is not living, it's more like dieing. Your vision of hope can change. You can always hope for something else.
With ALS, it seems like the first thing the Neurologists try to do is take hope away. They are the MF character. Not antagonistic, often very kind, very "understanding." They don't "wish" this on you. But they don't offer hope either. The TR character Andy knows that deep within him, no matter what happens to him (and boy do some awful things happen to him) he knows that there is a place that they can't touch, and that is his hope.
So let's all try to not lose that!
Peace,
B.
Friday, March 20, 2009
Wow, nearly a week since my last post!
Welcome to Spring. The weather this "winter" in Denver has been extremely mild. I don't know this for a fact, but I would venture a bet that this winter is in the top 10 of 70+ degree days. Since it's Spring, we still expect a few large snowstorms, but literally, I think most snow's we have had this year barely warranted shoveling because of the quick melt offs or general paltry volume in first place. It's supposed to be in the 70's all weekend with a 76 on Sunday. Nice.
I was at a business conference in Los Angeles the first half of this week and thanks to Frontier airlines cancelling my flight I got to spend an "extra" 6 hours sitting in LAX. That was fun. Does anyone else suspect that when flight is not full that they cancel it, call it a "mechanical" and make everyone sit around and wait so that they don't waste gas or something? My last two flights home from CA (both on Frontier) should have been 3 hour journeys but turned in to 11 hours. It did give me some time to figure out things like "mobile uploads" of photos to my Facebook account and some catch up time on emails. On the upside, I watched "The 40 year old Virgin" on TBS on the plane and got a few laughs. That movie, if you have not seen it, is hilarious in parts. Crude, but hilarious. I was LOL several times, which I needed after my long day, though i'm sure people were wondering about me. I'll say that the sensors for that movie on TBS had their work cut out for them (no pun intended.) If you are offended by bad language and crude humor do not watch this movie, you will be very offended. I loved it, so that gives you sense of my sense of humor, I guess.
Some ratings from my trip:
Hyatt Century Plaza: B-: Great friendly people, Comfortable rooms. Great outdoor seating, nice spa/gym. Only downside: Expensive: $10.50 for a vodka tonic, $18 for an overcooked burger? Come on people, that's not nice, don't you know there's a recession going on?
Restaurant: Toscana: A: Great service, Great Food (I had the short ribs...they were OMG good.) Also a bit pricey but in this case worth it. Had a phenom Super Tuscan, wish I got the name.
Restaurant: Houston's: C. Decent Martini, but my Halibut was overcooked.
Frontier: D-: They were fine on the trip out there, but a 5+ hour delay and then an offer to "comp" my TV 20 minutes into the flight after I had already swiped my credit card didn't seem like much of a mea-culpa. It happens, I know.
Viper room: B: Pretty cool place, not crowded on St. Paddy's day, but then again, not exactly an Irish pub either. The "band" was WEIRD. A bunch of people wearing B&D style masks with markings making them look like some kind of Aliens. Annie Lennox "sweet dreams" kind of pants/shirts w/ suspenders. All very butch. The singer had a great voice though I couldn't understand word 1 of what she was saying. It was sort of a techno vibe thing though so that's not surprising. Either way, it was, shall we say ... Interesting. Also, the doorman was clueless. We asked them if there was a band and he said no. Then we got in and the "no band" was two bands and a DJ in the "DJ performer" sense. On the other hand it wasn't like a "band" it was more like performance art with music. Also, what's with the DJ raising his hand to the crowd when he changes a beat? Then the crowd cheers? It's not like he just ripped off a massive, complex guitar solo or something. OOOOH...he flicked a switch or pushed a button at "just the right time!" WOW! whatever...
Thanks to Phil for coming all the way from TN to look after H in my two night absence (that turned into the better part of 3) and to Mike for picking me up at the airport at the late hour.
What does all this have to do with ALS? Nothing really, but I had a bit of a break this week, so I thought I'd give you one too. As I have not posted for a week, I just wanted to let everyone know that we are still out here and doing OK. It was nice for me to get away and catch up with business associates, a lot of whom I count as friends and to meet some new people as well.
Peace,
B.
I was at a business conference in Los Angeles the first half of this week and thanks to Frontier airlines cancelling my flight I got to spend an "extra" 6 hours sitting in LAX. That was fun. Does anyone else suspect that when flight is not full that they cancel it, call it a "mechanical" and make everyone sit around and wait so that they don't waste gas or something? My last two flights home from CA (both on Frontier) should have been 3 hour journeys but turned in to 11 hours. It did give me some time to figure out things like "mobile uploads" of photos to my Facebook account and some catch up time on emails. On the upside, I watched "The 40 year old Virgin" on TBS on the plane and got a few laughs. That movie, if you have not seen it, is hilarious in parts. Crude, but hilarious. I was LOL several times, which I needed after my long day, though i'm sure people were wondering about me. I'll say that the sensors for that movie on TBS had their work cut out for them (no pun intended.) If you are offended by bad language and crude humor do not watch this movie, you will be very offended. I loved it, so that gives you sense of my sense of humor, I guess.
Some ratings from my trip:
Hyatt Century Plaza: B-: Great friendly people, Comfortable rooms. Great outdoor seating, nice spa/gym. Only downside: Expensive: $10.50 for a vodka tonic, $18 for an overcooked burger? Come on people, that's not nice, don't you know there's a recession going on?
Restaurant: Toscana: A: Great service, Great Food (I had the short ribs...they were OMG good.) Also a bit pricey but in this case worth it. Had a phenom Super Tuscan, wish I got the name.
Restaurant: Houston's: C. Decent Martini, but my Halibut was overcooked.
Frontier: D-: They were fine on the trip out there, but a 5+ hour delay and then an offer to "comp" my TV 20 minutes into the flight after I had already swiped my credit card didn't seem like much of a mea-culpa. It happens, I know.
Viper room: B: Pretty cool place, not crowded on St. Paddy's day, but then again, not exactly an Irish pub either. The "band" was WEIRD. A bunch of people wearing B&D style masks with markings making them look like some kind of Aliens. Annie Lennox "sweet dreams" kind of pants/shirts w/ suspenders. All very butch. The singer had a great voice though I couldn't understand word 1 of what she was saying. It was sort of a techno vibe thing though so that's not surprising. Either way, it was, shall we say ... Interesting. Also, the doorman was clueless. We asked them if there was a band and he said no. Then we got in and the "no band" was two bands and a DJ in the "DJ performer" sense. On the other hand it wasn't like a "band" it was more like performance art with music. Also, what's with the DJ raising his hand to the crowd when he changes a beat? Then the crowd cheers? It's not like he just ripped off a massive, complex guitar solo or something. OOOOH...he flicked a switch or pushed a button at "just the right time!" WOW! whatever...
Thanks to Phil for coming all the way from TN to look after H in my two night absence (that turned into the better part of 3) and to Mike for picking me up at the airport at the late hour.
What does all this have to do with ALS? Nothing really, but I had a bit of a break this week, so I thought I'd give you one too. As I have not posted for a week, I just wanted to let everyone know that we are still out here and doing OK. It was nice for me to get away and catch up with business associates, a lot of whom I count as friends and to meet some new people as well.
Peace,
B.
Friday, March 13, 2009
Reader comments and answers
===If you are looking for my FDA related post, please scroll down...===
Hi All, I sometimes receive comments related to this blog via email. When I do this and there's some potential to help multiple people I ask the person that emailed me if I can post their note to the blog and answer their question publicly so that others might benefit. Here is one such note from a Mom caregiver.
========
I, for one, am ALWAYS looking for more that Bill writes. It's amazing how he says what we are thinking, and puts in writing what REALLY goes on at home. Thank you so much, Bill.
Does anyone have ideas for steps in a house? My PAL is my 31 year old daughter that refuses to go to a house other than the one that she and Justin knew was their home forever. 8 steps from their bedroom/bathroom to the living room.
Thanks for any advice, I didn't know where else to turn. We took Bill's advice on the wheel chair, and it is wonderful!!!! Almost like part of her can go and do with little effort.Boo
========
Boo,
I carry H around the house and up and down the stairs to our bedroom, but about 6 or 8 months ago I injured my back and we found ourselves in a difficult position for several days. We don't have a bedroom or a bathroom with a shower or tub on the main floor of the house. We had some strong friends carry H in my stead for a few days, but as a result of this and recognizing that there might be times when I either could not do it or might have to be away, we installed a chairlift. We had a company come out and quote our two staircases. The stairs going up would have been the most useful for us since our bedroom is up there, but the quote was $13,000.00 because of a curve in the steps. The basement stairs, where we have a guestroom and bathroom with a shower are straight, so the quote was $3500.00, a massive difference. So, we bought and installed the lift to the downstairs.
Since then, I have heard that the local ALS association sometimes receives these lifts as donations and will allow PALS families to have them as long as they pay for installation, which is generally between $500 and $1000 depending on the length. You might contact your local ALS Association or Muscular Dystrophy Association to see if they have one that you can install on loan.
I recognize that all PALS probably can't use this type of lift because it does require some trunk strength to ride, and also transferring can be an issue. Since we have not had to go down this road yet, I can't offer any guidance there, but if anyone knows how to manage this, please post a comment to this blog for others to use. Thanks for your question. I hope this helps.
Peace,
B.
Hi All, I sometimes receive comments related to this blog via email. When I do this and there's some potential to help multiple people I ask the person that emailed me if I can post their note to the blog and answer their question publicly so that others might benefit. Here is one such note from a Mom caregiver.
========
I, for one, am ALWAYS looking for more that Bill writes. It's amazing how he says what we are thinking, and puts in writing what REALLY goes on at home. Thank you so much, Bill.
Does anyone have ideas for steps in a house? My PAL is my 31 year old daughter that refuses to go to a house other than the one that she and Justin knew was their home forever. 8 steps from their bedroom/bathroom to the living room.
Thanks for any advice, I didn't know where else to turn. We took Bill's advice on the wheel chair, and it is wonderful!!!! Almost like part of her can go and do with little effort.Boo
========
Boo,
I carry H around the house and up and down the stairs to our bedroom, but about 6 or 8 months ago I injured my back and we found ourselves in a difficult position for several days. We don't have a bedroom or a bathroom with a shower or tub on the main floor of the house. We had some strong friends carry H in my stead for a few days, but as a result of this and recognizing that there might be times when I either could not do it or might have to be away, we installed a chairlift. We had a company come out and quote our two staircases. The stairs going up would have been the most useful for us since our bedroom is up there, but the quote was $13,000.00 because of a curve in the steps. The basement stairs, where we have a guestroom and bathroom with a shower are straight, so the quote was $3500.00, a massive difference. So, we bought and installed the lift to the downstairs.
Since then, I have heard that the local ALS association sometimes receives these lifts as donations and will allow PALS families to have them as long as they pay for installation, which is generally between $500 and $1000 depending on the length. You might contact your local ALS Association or Muscular Dystrophy Association to see if they have one that you can install on loan.
I recognize that all PALS probably can't use this type of lift because it does require some trunk strength to ride, and also transferring can be an issue. Since we have not had to go down this road yet, I can't offer any guidance there, but if anyone knows how to manage this, please post a comment to this blog for others to use. Thanks for your question. I hope this helps.
Peace,
B.
Thursday, March 12, 2009
Number 10 more FDA and a thought about pain...
Hi Everybody,
Well, as you know if your read the comments from my "top ten" blog post that someone very accurately pointed out to me that #10 in the "not in order top ten list of what keeps me sane" is this very blog and the other writing that I'm doing. I've mentioned before that it is cathartic for me to write and get some of this out of my system. It's also hard to share some of the personal stuff we are going through, given that this is a public blog and that I have a professional life as well. At the end of the day, though, it's about helping as much as you can while staying sane and in control yourself, so that is what I strive to do every day.
A couple of thoughts have come across my mind in the past couple of days. Since I read the FDA the riot act a few blog posts ago, they have actually approved IND's for some undetermined number of people. I am very happy for those that received it, but I'll also say that the report that I read from the FDA was one of the most CYA (cover your ass) comprehensive buckets of bullshit I have ever read. They effectively addressed all my complaints while at the same time announcing that they were only going to provide IPLEX to people that has successfully submitted their IND's prior to March 6th, three days BEFORE they released their notice.
Adding a link to the FDA's official statement so you can see what I mean:
http://www.fda.gov/cder/drug/infopage/mecasermin_rinfabate/FDA_statement.htm
It is very well written and extremely politically savvy. It makes me nauseous.
We requested that our physician submit the IND back in November and did not find out until 6 weeks later that not only had he not done it, that he was not going to do it because "his insurance company advised him not to" and because "he did not feel qualified to monitor progress on this medication." Of course we would have been willing so sign any waiver requested by him or his insurance company, but this does not seem to matter. Now, the FDA decides to only give the drug to people that somehow found an MD that would be willing to "go out on a limb" for their patients and announce it in a way that gives no one that could not find a cooperative doctor a chance to find one? Very Sad.
Of course, they seem to have very good reason for this. Apparently, there is a "limited supply" of the drug and between those that had their IND's in, and the "lottery" that they are going to run for some "lucky" few to get into the clinical trial (where you may or may not get the drug) there just wouldn't be enough of it to go around for everyone that wants it.
Talk about a "convenient truth." This is a manufactured drug. It's not like we have to wait around until the fall to harvest another round of IPLEX from the Great Plains or the Steppe of Peru. Somebody please explain this to me. Please. Can I chip in for a couple more centrifuges or rubber gloves please? Need some of my spinal fluid for development? Sign me up. Maybe A-Rod or Sly Stallone can source some HGH for you to manipulate. I'll call them.
By the way, I'm not suggesting that my post had anything to do with the FDA's final decision to allow access to the successful few. I am suggesting that the fact that they did what they did is totally unfair and to me seems pointed at silencing the most active and connected people among the group seeking the drug.
Well, in that I don't think that they have succeeded because I don't believe that "Team IPLEX" is going to give up just because some of them got the drug. Eddie and his army have already announced their dismay with the limited supply and are fighting for everyone that wants to try it to have access to it.
I'm also not suggesting that I believe that this drug is going to be a panacea to anyone with ALS and to that end, I humbly request that anyone that DID get the drug to please keep the community posted as to it's efficacy (or lack thereof.) Please do that for us waiting in the wings.
Here's a note that Eddie sent to us all:
Dear friends,
First of all, I would like to extend a heartfelt personal thanks to any and all that helped us , (Team IPLEX) in our drive to gain access to IPLEX, as a possible therapeutic for ALS.
Although we (Team IPLEX & ALS worldwide) are pleased at the availability of Iplex for some under this condition, we are very displeased with its present unavailability to others. Accordingly, Barbara & Stephen Byer will continue their planned meetings with the Health Policy Staffs of ( 12 ) US Senators and ( 3 ) US Representatives in Washington, DC on Wednesday, March 11 through Friday, March 13, 2009 in an effort To Expand - Both the Allowable Number of Patients Accessing IPLEX and its manufacturing capacity by Insmed, perhaps with government assistance.
For further information concerning IPLEX please contact:
Stephen Byer
stephenbyer@alsworldwide.org
ALS WORLDWIDE
608 663-0920 Office
608 698-4200 Cellular
608 237-2274 Fax
125 N. Hamilton Street
Madison, WI 53703
On Pain...
On a totally different note, the teenage daughter of some good friends of ours was just "dumped" by her first "real" boyfriend. I remember when a similar thing happened to me a long time ago and the real pain that I felt. Looking back, of course, this was not a significant or defining event in my life, but the hurt, having never felt this before, was real to me at the time. Maybe something similar happened to you once.
This reminds me that all pain that is felt by anyone is real. It is real to them, no matter how it might seem to others. There's plenty of pain to go around and I think that what defines you is not how much you have been handed, but how you emerge from it.
My humble advice on this topic: You can never let yourself be defined by someone or something else. YOU have to figure out who you are, where you stand and what you are all about. The agendas and circumstances that are out of your control are not defining criteria for who you are. How you react, deal with and emerge from them are. Be strong.
Peace.
B.
Well, as you know if your read the comments from my "top ten" blog post that someone very accurately pointed out to me that #10 in the "not in order top ten list of what keeps me sane" is this very blog and the other writing that I'm doing. I've mentioned before that it is cathartic for me to write and get some of this out of my system. It's also hard to share some of the personal stuff we are going through, given that this is a public blog and that I have a professional life as well. At the end of the day, though, it's about helping as much as you can while staying sane and in control yourself, so that is what I strive to do every day.
A couple of thoughts have come across my mind in the past couple of days. Since I read the FDA the riot act a few blog posts ago, they have actually approved IND's for some undetermined number of people. I am very happy for those that received it, but I'll also say that the report that I read from the FDA was one of the most CYA (cover your ass) comprehensive buckets of bullshit I have ever read. They effectively addressed all my complaints while at the same time announcing that they were only going to provide IPLEX to people that has successfully submitted their IND's prior to March 6th, three days BEFORE they released their notice.
Adding a link to the FDA's official statement so you can see what I mean:
http://www.fda.gov/cder/drug/infopage/mecasermin_rinfabate/FDA_statement.htm
It is very well written and extremely politically savvy. It makes me nauseous.
We requested that our physician submit the IND back in November and did not find out until 6 weeks later that not only had he not done it, that he was not going to do it because "his insurance company advised him not to" and because "he did not feel qualified to monitor progress on this medication." Of course we would have been willing so sign any waiver requested by him or his insurance company, but this does not seem to matter. Now, the FDA decides to only give the drug to people that somehow found an MD that would be willing to "go out on a limb" for their patients and announce it in a way that gives no one that could not find a cooperative doctor a chance to find one? Very Sad.
Of course, they seem to have very good reason for this. Apparently, there is a "limited supply" of the drug and between those that had their IND's in, and the "lottery" that they are going to run for some "lucky" few to get into the clinical trial (where you may or may not get the drug) there just wouldn't be enough of it to go around for everyone that wants it.
Talk about a "convenient truth." This is a manufactured drug. It's not like we have to wait around until the fall to harvest another round of IPLEX from the Great Plains or the Steppe of Peru. Somebody please explain this to me. Please. Can I chip in for a couple more centrifuges or rubber gloves please? Need some of my spinal fluid for development? Sign me up. Maybe A-Rod or Sly Stallone can source some HGH for you to manipulate. I'll call them.
By the way, I'm not suggesting that my post had anything to do with the FDA's final decision to allow access to the successful few. I am suggesting that the fact that they did what they did is totally unfair and to me seems pointed at silencing the most active and connected people among the group seeking the drug.
Well, in that I don't think that they have succeeded because I don't believe that "Team IPLEX" is going to give up just because some of them got the drug. Eddie and his army have already announced their dismay with the limited supply and are fighting for everyone that wants to try it to have access to it.
I'm also not suggesting that I believe that this drug is going to be a panacea to anyone with ALS and to that end, I humbly request that anyone that DID get the drug to please keep the community posted as to it's efficacy (or lack thereof.) Please do that for us waiting in the wings.
Here's a note that Eddie sent to us all:
Dear friends,
First of all, I would like to extend a heartfelt personal thanks to any and all that helped us , (Team IPLEX) in our drive to gain access to IPLEX, as a possible therapeutic for ALS.
Although we (Team IPLEX & ALS worldwide) are pleased at the availability of Iplex for some under this condition, we are very displeased with its present unavailability to others. Accordingly, Barbara & Stephen Byer will continue their planned meetings with the Health Policy Staffs of ( 12 ) US Senators and ( 3 ) US Representatives in Washington, DC on Wednesday, March 11 through Friday, March 13, 2009 in an effort To Expand - Both the Allowable Number of Patients Accessing IPLEX and its manufacturing capacity by Insmed, perhaps with government assistance.
For further information concerning IPLEX please contact:
Stephen Byer
stephenbyer@alsworldwide.org
ALS WORLDWIDE
608 663-0920 Office
608 698-4200 Cellular
608 237-2274 Fax
125 N. Hamilton Street
Madison, WI 53703
On Pain...
On a totally different note, the teenage daughter of some good friends of ours was just "dumped" by her first "real" boyfriend. I remember when a similar thing happened to me a long time ago and the real pain that I felt. Looking back, of course, this was not a significant or defining event in my life, but the hurt, having never felt this before, was real to me at the time. Maybe something similar happened to you once.
This reminds me that all pain that is felt by anyone is real. It is real to them, no matter how it might seem to others. There's plenty of pain to go around and I think that what defines you is not how much you have been handed, but how you emerge from it.
My humble advice on this topic: You can never let yourself be defined by someone or something else. YOU have to figure out who you are, where you stand and what you are all about. The agendas and circumstances that are out of your control are not defining criteria for who you are. How you react, deal with and emerge from them are. Be strong.
Peace.
B.
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