Wednesday, January 5, 2011
Funny how time goes by so quickly!
One year later...weight still dropping...vision good but some damage to tear ducts during the 10 year -duh huh phase???...when no one but dumb old meddling mom thought she was still GHD. So we are blessed! I wish I were made out of money so that I could fly to the adult endo outside of Kansas City who was so taken aback that I would be in my adult daughters appointment with her, and holy cow---ask him questions...that he asked- "where did you get YOUR training..because that's not what I learned at Harvard." OMG- OMG- OMG!!!! Is Harvard teaching omnipotence instead of medicine these days? I doubt it. But apparently, some good old customer training wouldn't help med students.
Tuesday, June 8, 2010
BioSimilars, BioEquivalents,BioIdenticals Say What?
Ok as the world progresses so does medical technology. And then the "me too" greed sets in. Such is the case with medicine.
As pharmaceutical companies find a cure or a treatment for a condition (I am going to use growth hormone deficiency as my example because I know a little about it)...they spend millions and sometimes even billions of dollars in R & D (Research & Development) to develop the drugs. And when they go through the process they do testing in the labs, and after years of refining their information and animal testing, they go into trials with people. And even more years later, IF the trials all prove "good" they approach the FDA (Food and Drug Administration) for a license to provide the drug to the public.
This process takes years and years and MAJOR money. It is also HIGHLY scrutinized and evaluated on many levels. And to give drug companies the incentive to keep doing research for cures etc. they are granted a license to be able to exclusively sell their product (without anyone being able to copy and sell it cheaper) for a few years (around 7 years I think). This is good because without this incentive, drug companies would have no reason to search for cures. Why would they put out that kind of time and HUGE investment, if they couldn't be guaranteed that some "me too" company would "Copy" their product and sell it cheaper? The answer is...they wouldn't! So for all of us who use any kind of medicine...we need drug companies to be protected (within reason) so that they can keep searching for new drugs and better drugs.
Now for those of us with kids who have needed growth hormone, we all know that process is important but we also went into shock when we found out how much growth hormone cost! I know I did! We went into full blown panic. But to be fair, drug companies set the cost of drugs they discover based on the patient population that they expect to benefit from a drug. In other words, because they "estimated" that only 20,000 kids would need the drug....how do they recoup their millions of R & D? They price it high! And Insurance companies fight the parents trying to help their kids...and the world gets nasty and messy. In the end, it is the kids who may go without the med, the parents who are destroyed with guilt or panic over how to help their kids who are hurt by what should have been a medical miracle.
So drug companies have put "help" out there to families. Thank God because no Insurance company would!
And now that GH has been available via a safe BioIdentical drug for a while....the "me too's" are starting to pop up.
So what does this mean?
It means that companies who have a "bioSimiliar" or "bioEquivalent" drug (which is NOT the exact as the original products) can now make deals with Insurance companies to FORCE them to only pay for their "cheaper" drugs.
Why do I think this is dangerous?
1. It allows for people "in the world somewhere" with Insurance companies to mandate medical treatment.
2. It allows for a less than optimum product to be used without regard to the patients in favor of an economic savings.
3. It allows for a product which does NOT go through the same rigorous testing-to be used on ...US! And our children....
And with the "new" health care plan being set up....they are favoring the generics instead of the name brand original drugs. If your body cannot benefit or has a reaction to the less than original drug (meaning the generic)...you have no choice! Either pay out of pocket or ....suffer!
When people work hard to provide Insurance for their families, pay each month....and then are told NO...what is going on? Next we will be fined if we brush our teeth from left to right instead of right to left!
There are so many people in this country who want to do good but the opportunity is not there. Some how someone needs to set up something and hold true so that the faith in our system can be restored. For the people...by the people!
As pharmaceutical companies find a cure or a treatment for a condition (I am going to use growth hormone deficiency as my example because I know a little about it)...they spend millions and sometimes even billions of dollars in R & D (Research & Development) to develop the drugs. And when they go through the process they do testing in the labs, and after years of refining their information and animal testing, they go into trials with people. And even more years later, IF the trials all prove "good" they approach the FDA (Food and Drug Administration) for a license to provide the drug to the public.
This process takes years and years and MAJOR money. It is also HIGHLY scrutinized and evaluated on many levels. And to give drug companies the incentive to keep doing research for cures etc. they are granted a license to be able to exclusively sell their product (without anyone being able to copy and sell it cheaper) for a few years (around 7 years I think). This is good because without this incentive, drug companies would have no reason to search for cures. Why would they put out that kind of time and HUGE investment, if they couldn't be guaranteed that some "me too" company would "Copy" their product and sell it cheaper? The answer is...they wouldn't! So for all of us who use any kind of medicine...we need drug companies to be protected (within reason) so that they can keep searching for new drugs and better drugs.
Now for those of us with kids who have needed growth hormone, we all know that process is important but we also went into shock when we found out how much growth hormone cost! I know I did! We went into full blown panic. But to be fair, drug companies set the cost of drugs they discover based on the patient population that they expect to benefit from a drug. In other words, because they "estimated" that only 20,000 kids would need the drug....how do they recoup their millions of R & D? They price it high! And Insurance companies fight the parents trying to help their kids...and the world gets nasty and messy. In the end, it is the kids who may go without the med, the parents who are destroyed with guilt or panic over how to help their kids who are hurt by what should have been a medical miracle.
So drug companies have put "help" out there to families. Thank God because no Insurance company would!
And now that GH has been available via a safe BioIdentical drug for a while....the "me too's" are starting to pop up.
So what does this mean?
It means that companies who have a "bioSimiliar" or "bioEquivalent" drug (which is NOT the exact as the original products) can now make deals with Insurance companies to FORCE them to only pay for their "cheaper" drugs.
Why do I think this is dangerous?
1. It allows for people "in the world somewhere" with Insurance companies to mandate medical treatment.
2. It allows for a less than optimum product to be used without regard to the patients in favor of an economic savings.
3. It allows for a product which does NOT go through the same rigorous testing-to be used on ...US! And our children....
And with the "new" health care plan being set up....they are favoring the generics instead of the name brand original drugs. If your body cannot benefit or has a reaction to the less than original drug (meaning the generic)...you have no choice! Either pay out of pocket or ....suffer!
When people work hard to provide Insurance for their families, pay each month....and then are told NO...what is going on? Next we will be fined if we brush our teeth from left to right instead of right to left!
There are so many people in this country who want to do good but the opportunity is not there. Some how someone needs to set up something and hold true so that the faith in our system can be restored. For the people...by the people!
Wednesday, April 14, 2010
The reporter became speechless during the interview with George Chmiel!
You know...every once in a while someone does something which is so self sacrificing that it just amazes people. And when you hear about these people, you want to know more! When I heard about George Chmiel...it was like that.
George is a young guy (at the time I first ..."met" him he was 28 years old) who is obviously in the prime of his life. He excels at everything...so over achiever is probably his nickname. At this young age, he is already the Vice President of Structured Products for Bank of America/Merrill Lynch in the Boston office. He is good looking, single, funny and is one of those super humans that most of the rest of us...can only aspire to be.
And to top things off, he devotes his free time to a charity by doing something so amazing that if impacts thousands and thousands of people around the world! OMG!
He does it quietly, without asking for attention, but in such a way as to command our attention and admiration. Television interviewers have even been "speechless" talking to him...he is just that astounding! (See this recent interview as an example: http://www.thebostonchannel.com/video/23135683/index.html .)
His mom says that he has always been a challenge and I can imagine that is an understatement because how do you tame a drive that big? Do you even attempt to slow down a heart driven to help ill children? He is not even married nor a father yet!
The story about George Chmiel and how all of this came about is reaching many sources via Facebook and Twitter. Some of his local media have even conducted interviews...and yet without fanfare- he just keeps training for his ultra marathons, despite his damaged wrist and surgeries, all for children! He does hear from families sometimes but there is a trickle down effect which he may never know. And still he goes on....
He completed a Sahara Desert 155 mile marathon in only 5 days and raised an astounding $66,000+ for The MAGIC Foundation. And now, 6 months later, he is at it again! His goal is to raise $100,000 for MAGIC and to possibly run a marathon on all 7 continents.
Many families whose children are impacted and touched by George's efforts have contacted the national media...so far nothing. But families keep talking to each other and spreading the word about this super human effort and man. I can only pray that someday, someone with Good Morning America, the Today Show or maybe even Oprah will learn about George Chmiel because he deserves to be recognized!!!
Thank God for George Chmiel and those who selflessly work to help children. I hope those of you reading this simple BLOG pass on the information-read his personal BLOG at http://www.luciandgeorge.com/ and maybe even post something to him. If "we" do not support the good guys of this world...what does that say about us? As Martin Luther King, Jr. said; "Our lives begin to end the day we become silent about things that matter."
George is a young guy (at the time I first ..."met" him he was 28 years old) who is obviously in the prime of his life. He excels at everything...so over achiever is probably his nickname. At this young age, he is already the Vice President of Structured Products for Bank of America/Merrill Lynch in the Boston office. He is good looking, single, funny and is one of those super humans that most of the rest of us...can only aspire to be.
And to top things off, he devotes his free time to a charity by doing something so amazing that if impacts thousands and thousands of people around the world! OMG!
He does it quietly, without asking for attention, but in such a way as to command our attention and admiration. Television interviewers have even been "speechless" talking to him...he is just that astounding! (See this recent interview as an example: http://www.thebostonchannel.com/video/23135683/index.html .)
His mom says that he has always been a challenge and I can imagine that is an understatement because how do you tame a drive that big? Do you even attempt to slow down a heart driven to help ill children? He is not even married nor a father yet!
The story about George Chmiel and how all of this came about is reaching many sources via Facebook and Twitter. Some of his local media have even conducted interviews...and yet without fanfare- he just keeps training for his ultra marathons, despite his damaged wrist and surgeries, all for children! He does hear from families sometimes but there is a trickle down effect which he may never know. And still he goes on....
He completed a Sahara Desert 155 mile marathon in only 5 days and raised an astounding $66,000+ for The MAGIC Foundation. And now, 6 months later, he is at it again! His goal is to raise $100,000 for MAGIC and to possibly run a marathon on all 7 continents.
Many families whose children are impacted and touched by George's efforts have contacted the national media...so far nothing. But families keep talking to each other and spreading the word about this super human effort and man. I can only pray that someday, someone with Good Morning America, the Today Show or maybe even Oprah will learn about George Chmiel because he deserves to be recognized!!!
Thank God for George Chmiel and those who selflessly work to help children. I hope those of you reading this simple BLOG pass on the information-read his personal BLOG at http://www.luciandgeorge.com/ and maybe even post something to him. If "we" do not support the good guys of this world...what does that say about us? As Martin Luther King, Jr. said; "Our lives begin to end the day we become silent about things that matter."
Thursday, April 8, 2010
UGH
Some days all you can say is UGH and hope that tomorrow brings a better mood. Today is one of those days.
I have been fighting for people to understand the serious nature of growth hormone deficiency for 20+ years. And it seems as if the general perception is still that growth hormone is just to make kids taller. I have talked to thousands of people; been interviewed by televsion, newspaper and radio reporters in many cities...spoken to medical groups, and groups of parents....and still the lack of understanding prevails. UGH
I have been fighting for people to understand the serious nature of growth hormone deficiency for 20+ years. And it seems as if the general perception is still that growth hormone is just to make kids taller. I have talked to thousands of people; been interviewed by televsion, newspaper and radio reporters in many cities...spoken to medical groups, and groups of parents....and still the lack of understanding prevails. UGH
Thursday, March 25, 2010
Poor Old Guy
Ok- as of today I must add wild cats to the list of things which drive my husband nuts!
We have had this wild, scruffy, long haired old back tom cat hanging around my house for almost 2 months now. He "sprays" everything! My yard furniture, kids swing, house, lawnmower etc. And heaven forbid if we leave the garage door open- then he sneaks in and sprays everything else! It has been a nightmare of scents!
We have called animal control, we have laid traps with expensive tuna in it, and everything else we could think of....nothing has trapped nor stopped this monster.
This morning he started a battle next to the house with my little girl cat. The noise they were making was horrible! It sounded like someone dying out there. So my husband takes off running full speed ahead to "run him off".
Well as everyone knows, full speed ahead for a almost 52 year old man...is not what it once was but in all honesty this old guy is really pretty quick even now. I was amazed at how fast he went until he suddenly stopped and began hopping on one leg! Yep- you guessed it- he pulled a big muscle running from his knee all the way up! OUCH!
He did manage to run the wild cat off, but now he is in bed with drugs.....what a way to start the day!
We have had this wild, scruffy, long haired old back tom cat hanging around my house for almost 2 months now. He "sprays" everything! My yard furniture, kids swing, house, lawnmower etc. And heaven forbid if we leave the garage door open- then he sneaks in and sprays everything else! It has been a nightmare of scents!
We have called animal control, we have laid traps with expensive tuna in it, and everything else we could think of....nothing has trapped nor stopped this monster.
This morning he started a battle next to the house with my little girl cat. The noise they were making was horrible! It sounded like someone dying out there. So my husband takes off running full speed ahead to "run him off".
Well as everyone knows, full speed ahead for a almost 52 year old man...is not what it once was but in all honesty this old guy is really pretty quick even now. I was amazed at how fast he went until he suddenly stopped and began hopping on one leg! Yep- you guessed it- he pulled a big muscle running from his knee all the way up! OUCH!
He did manage to run the wild cat off, but now he is in bed with drugs.....what a way to start the day!
Wednesday, March 24, 2010
My Mosquito Man
My husband hates HATES mosquitoes. They drive him NUTS! And because we live in the south....he is annoyed quite often! Lucky me!
If he hears a mosquito flying around his head in the middle of the night...
He jumps out of bed faster than Superman...seriously-I am not kidding!
Then he turns every light in the bedroom....including the 50 inch TV...ON
Then he waits....
And waits...
And waits some more until....
He spots the tormentor....
Needless to say...by this time I am wide awake and thrilled about it! UGH
He has perfected this routine-
If he doesn't see the mosquito right away...
He will begin to turn off the lights one by one....
Goal? To stop blinding the mosquito??? Noooo-
The goal is to "herd" the mosquito to the last light turned on so he can be spotted.
Ok- I will give him points for intelligence on that one...
I have gotten so used to his obsession that I rarely notice anymore...however.... :-)
One evening I was in the kitchen and I heard a HUGE thud....
Now don't get me wrong- I was used to hearing pillows hit the wall, shoes being thrown at a passing mosquito...etc. but this was different.
It was the kind of thud that got your attention and was followed by complete silence....
Scary as hell silence and I took off running towards the bedroom.
My poor mosquito man had been jumping (literally) around the room after what must have been a particularly stealthy mosquito. Now to give you some idea...my husband has had no ballet training- he is a guys guy... so frolicking about in a room full of furniture...not the best scenario for the guy. And when running and jumping from the floor to the bed....miss stepped! His big toe got stuck between the bed frame and the mattress!
There he was...face down on the bed with his legs pinned up underneath him and he was gripping his foot! Not good!!!! And to top it off- he was going into shock. Long story short: I got him taken care of- no worries!!! I do really adore and love this man...but as you will learn from this blog...he makes it way toooo easy to write about! :-)
New House Rule: When chasing mosquitoes- one must wear shoes.
If he hears a mosquito flying around his head in the middle of the night...
He jumps out of bed faster than Superman...seriously-I am not kidding!
Then he turns every light in the bedroom....including the 50 inch TV...ON
Then he waits....
And waits...
And waits some more until....
He spots the tormentor....
Needless to say...by this time I am wide awake and thrilled about it! UGH
He has perfected this routine-
If he doesn't see the mosquito right away...
He will begin to turn off the lights one by one....
Goal? To stop blinding the mosquito??? Noooo-
The goal is to "herd" the mosquito to the last light turned on so he can be spotted.
Ok- I will give him points for intelligence on that one...
I have gotten so used to his obsession that I rarely notice anymore...however.... :-)
One evening I was in the kitchen and I heard a HUGE thud....
Now don't get me wrong- I was used to hearing pillows hit the wall, shoes being thrown at a passing mosquito...etc. but this was different.
It was the kind of thud that got your attention and was followed by complete silence....
Scary as hell silence and I took off running towards the bedroom.
My poor mosquito man had been jumping (literally) around the room after what must have been a particularly stealthy mosquito. Now to give you some idea...my husband has had no ballet training- he is a guys guy... so frolicking about in a room full of furniture...not the best scenario for the guy. And when running and jumping from the floor to the bed....miss stepped! His big toe got stuck between the bed frame and the mattress!
There he was...face down on the bed with his legs pinned up underneath him and he was gripping his foot! Not good!!!! And to top it off- he was going into shock. Long story short: I got him taken care of- no worries!!! I do really adore and love this man...but as you will learn from this blog...he makes it way toooo easy to write about! :-)
New House Rule: When chasing mosquitoes- one must wear shoes.
After the Growing Years -Final
So at the doctor's office we learned....she needed to be on growth hormone as an adult! And she would most likely need it for the rest of her life but we had to watch her very carefully for the first 6 months to make sure everything was "good".
It took another frustrating 2 months before all the paperwork, Insurance, etc. all went through...but she finally got her med's. And after only 10 days of being back on it (finally)...her vision began to improve-the headaches stopped and she stopped all of her heart med's...Guess what- she didn't need it anymore! The neurocardiosyncopy (passing out) was essentially gone! And after only a few months she was gaining a normal persons strength...meaning she could walk...drive...play with her kids...and her hair started growing back (instead of looking like an old lady with old age hair loss).
Three months after being back on growth hormone, I flew her back to the pediatric endocrinologist for her check up....all systems PERFECT! YAY-YAY-YAY!!!!!!!!
Another 3 months later....still good! So we were able to finally switch her to a local adult endocrinologist in her area who could monitor her from that point forward.
In our house I used to drive the kids nuts by saying "mom is always right". And if they argued...I would let them learn something the hard way and then say...."mom is always right" (instead of "I told you so"). Nice to know that I have not lost my touch as my brain is definitely aging- so I doubt I will have many more of these opportunities! :-)
So today, she is getting healthy again. Her lung strength is getting back to normal. She walks every night and she is loosing weight. (I am so jealous!) Her mind is sharp and her smile is contagious as it once was...live is good...not perfect....but really REALLY good!
And now that I have fulfilled my promise to write all of this journey down...I can get on with more humorous stories in the future. If anyone needs help...visit;
http://www.magicfoundation.org/ !
It took another frustrating 2 months before all the paperwork, Insurance, etc. all went through...but she finally got her med's. And after only 10 days of being back on it (finally)...her vision began to improve-the headaches stopped and she stopped all of her heart med's...Guess what- she didn't need it anymore! The neurocardiosyncopy (passing out) was essentially gone! And after only a few months she was gaining a normal persons strength...meaning she could walk...drive...play with her kids...and her hair started growing back (instead of looking like an old lady with old age hair loss).
Three months after being back on growth hormone, I flew her back to the pediatric endocrinologist for her check up....all systems PERFECT! YAY-YAY-YAY!!!!!!!!
Another 3 months later....still good! So we were able to finally switch her to a local adult endocrinologist in her area who could monitor her from that point forward.
In our house I used to drive the kids nuts by saying "mom is always right". And if they argued...I would let them learn something the hard way and then say...."mom is always right" (instead of "I told you so"). Nice to know that I have not lost my touch as my brain is definitely aging- so I doubt I will have many more of these opportunities! :-)
So today, she is getting healthy again. Her lung strength is getting back to normal. She walks every night and she is loosing weight. (I am so jealous!) Her mind is sharp and her smile is contagious as it once was...live is good...not perfect....but really REALLY good!
And now that I have fulfilled my promise to write all of this journey down...I can get on with more humorous stories in the future. If anyone needs help...visit;
http://www.magicfoundation.org/ !
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