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Wednesday, August 24, 2011

Celebrities and Athletes Drug Abuse is Killing Little Kids

Preface

Increasingly, celebrities and nationally recognized athletes are being identified and arrested for abuse or possession of growth hormone. Undoubtedly, there are many others abusing this drug with false ideas of endless youth or muscle strength.


To all those who abuse this drug,

To those who report this drug only for its cosmetic use without also validating its real medical importance, &

To those who deny medically ill children and adults their right to insurance payment for this treatment-

STOP!

You are killing little kid’s chances and affected adults rights for a healthy life!

Hidden in the shadows of our world are little known, but very powerful people who control everything in our lives. Their decisions control what we see on television all the way down to the items we have to choose from in the grocery store. To some extent, everything we think we have a choice of- is already pre-chosen for us. And that is probably a good thing (to an extent). The world needs some type of order and control in order to be a peaceful place. We, the regular "normal" working people, get it. But when we are quietly being manipulated at the expense of our own children’s health and well being…we no longer sit still nor remain quiet.

It seems as if these select people sitting at the top of large corporations have gained enough confidence to unequivocally say…growth hormone is not medically needed for anyone- deny all claims. "They" are probably thrilled each time an athlete or celebrity is arrested for possession or abuse of this drug. If the public is against this drug,  they can "get away with" denying insurance payments for truly needy children and or adults. After all, insurance companies save thousands of dollars for each day and each child they deny. This happens each day without any thought to the children's bodies ravaged by a lack of medical attention along the way. I can imagine their thoughts…it’s a rare condition, how many people will rally to their defense if we deny some kids? It’s not like we are denying something that they think is life saving.

For parents of growth affected children, this trend is beyond alarming. Denying medically needy children growth hormone treatments can shorten their life spans, cause heart, lung and bone problems, invoke osteoporosis and decrease the quality of their health in many other ways throughout their lifetime. (This by the way, leads to more insurance claims down the road which could have been avoided. But that is not important to those watching this years “bottom line”!)

Growth hormone is a crucial hormone for every living creature. For those whose bodies cannot make or use it properly, they actually rely upon this medicine for life. The impact of going without it may not be immediate in all cases but rather it would be a slow, torturous debilitating death. Some nationally syndicated news programs have implied that growth hormone is used as a cosmetic drug which is used primarily to give short children an edge of being taller. Additionally, many newspapers, magazines, and other media frequently report about the latest scandal of celebrities and athletes drug abuse. Thankfully, some true journalists on local levels have performed their due diligence and reported the facts about how essential this medical treatment is for children and ill adults.

So to get to the bottom of this medical insurance problem we had to wonder, who does this sensationalized reporting of growth hormone abuse benefit? It does not benefit those truly in need of this medicine, it does not benefit the poor sap who was convinced into thinking he or she needed it to "stay ahead", so who benefits?

Sensational stories do feed our curiosity about high profile people. And sensational stories do sell more papers and increase viewer ratings. But ultimately who truly benefits? You don't benefit, I don't get anything, certainly the sick kids don't benefit...The magazine owners, television owners etc. make a profit…but it is a small one time thing...unless repeated stories encouraged. Who else…on an even higher level gets something beneficial from this abuse?

I find it “funny” that at the same time these stories become news, families begin to report insurance company denials for their kids cases in record numbers. Did this happen years ago when reports of the abuse first started creeping into the media…you bet they did!

So who is using what or who?

In order to understand what is going on today, you have to look at the big picture- so hang on!

The Beginning –

Growth hormone was first identified and used as a medical therapy back in the 50’s. And rather than bore you with tons of medical “junk” I will simply say that prior to the mid 1980's growth hormone was VERY difficult to get and very few people knew about it. However, in 1985 a completely new process of making medicine was discovered. This scientific breakthrough technology allowed for the clean and safe “reproduction” of a bio-identical growth hormone (and other desperately needed medicines). The cost to develop the technology was VERY expensive and the process to actually make these medicines is also expensive, therefore-the medicine is expensive.

Initially, there were many studies about this "new" growth hormone. This meant that pharmaceutical companies paid the costs (physician’s charges and medicine bills) for the children's medical care. However, after the studies were completed and everything pointed to a very successful and safe medicine, the medicine became available to everyone who "fit" the FDA's guidelines. As the years went on, news of a safe treatment for the kids spread and physicians began referring children and adults to specialists for help. It took a while for this transition to happen but by the mid 1990's most everyone had heard something about growth hormone. This increase in awareness meant that more children were actually getting help and.....insurance claims were filed. As an FDA approved drug, insurance companies were required to pay for this treatment.  

Ultimately, and eventually parents began to call The MAGIC Foundation for help. We were told about insurance policies which had been "changed” to exclude growth hormone specifically from their policies, or begin to mask this discrimination by rejecting all “injectables” (this includes insulin unless otherwise stipulated) in their policies. This tightening of what they would and would not cover has become even more detailed today. Insurance companies have begun to stipulate that they will pay for growth hormone for certain conditions but will not pay for other conditions despite the FDA approval for those conditions. (These include conditions in which the children are experiencing medical challenges and a severe lack of normal growth.)

Unexpected numbers of ill children are now living normal and healthy lives thanks to the various new medicines developed via biotechnology. This must have sent the Insurance companies into planning panics as other drugs were and will continue to be, on the horizon using this same new technology. They will not be cheap. But what is the price of having a healthy child? If you work hard, do everything right to provide for your family, pay your insurance premiums without fail, why should you not get what you have worked and paid for?

So from the Insurance industry standpoint, they must have wondered; how can we argue against allowing this medical treatment without looking like a monster to the public as we financially need to deny covering this medical treatment?  From my standpoint as a mom and consumer, if you are profiting by millions and millions of dollars each year, why would you deny my child?

Some companies simply refused to cover the medicine. However, parents began to fight against “paper pushers” having a voice in their child’s medical care. Some parents gathered in groups and others were up against such a wall of NO that they had to go public and approached the media with their personal plight. Insurance companies want to look good to the public so that they can sell more policies and to their stockholders. So going public is very bad publicity! Other insurers began to quietly deny the drug, or to place harsh restrictions and criteria prior to covering this treatment. Some insurers required that children undergo not just one but multiple hours of repetitive tests (different types of the same test) to verify the diagnosis. The amazing thing was that these decisions were being made by people employed by Insurance companies who were not specialists in this medical issue! Yet, they had the power to deny little kids a desperately needed hormone to make them healthy!

In the past couple of years, we have seen trends whereas the Insurance companies seem to automatically deny all growth hormone claims. Such claims seem to get lost in endless mountains of “proper process”. With denial letters lacking any “specific” details for the denial. If families press for the exact reasons, ridiculous excuses, such as they were filed with the wrong diagnosis, were commonplace. It seems as if insurance companies have mastered the game of stalling the claims. So thinking “deep” again, we had to wonder; What does stalling a claim accomplish? Hmmm… Could it be that for each month they stall the start of an authorized medical treatment they save thousands of dollars? Who does this benefit? Reason would dictate that insurance chairmen look better to their stockholders if their bottom line looks good…But at the expense of ill children! What happened to ethics and decency?

We have heard arguments about the “prohibitive costs” or “cosmetic therapy” as being reasons for denial of many growth hormone claims. We could counter that argument with an examination of the salaries of the insurance company management. As hard working middle America people, we believe that millions and millions of dollars for one person’s salary is prohibitive. However, we do not begrudge anyone earning such a salary…that is until that person denies a child health care so he or she can maintain his own salary. This is particularly true when parents are paying his company a premium to ensure health coverage for their child.

Please do not misinterpret my argument here, I am neither a socialist nor a communist and do not agree with socialized medicine. (I have heard horror stories from Canada, England and many countries where socialized medicine exists and definitely prefer our system). But I do believe in ethics and our current system is in serious need of refreshing that concept.

Now imagine it is 1985 and the national and local press has been doing some small stories about this new wonder technology which now can replicate growth hormone.

-How does an Insurance company prepare for the inevitable expense? Surely they realized that this problem was only going to increase. Growth hormone was proving to be crucial for more other healing issues such as burn victims! Could media reports be encouraged which would show the sensational aspects of how it builds muscle in a deficient body?

To be honest this entire concept was a joke 10 years ago. As "normal" people we do not have the luxury of focusing on the “bigger” picture. Instead we have to worry about paying the bills coming in next week. This narrow focus is what people in the shadows rely on. Keep them too busy to organize together and things will be different before they know it and then it will be too late. They are too tired from helping their kids with homework, doing their job, worrying about everything in their little worlds to take time to do anything (make a phone call, send an email or write a letter to a politician or television advertisers) if they see a problem. They don’t have the time, energy or desire to see any big picture.

If that is true-we (the little people) deserve everything we get!
So what I want to say is this:
Attention-
Mike Jacobs
Roger Clemens
Barry Bonds
Sylvester Stallone
Suzanne Sommers
Jason Grimsley
Keith Richards
Tyler Perry
Wyclef Jean
Timbaland
Chris Benoit
Mary J. Blige
50 Cent
(Excuse me if I listed you falsely. I got your name from a list on this website: http://www.kensavage.com/archives/hgh-and-celebrities/ )
and anyone else who is trying to pharmaceutical their way through life instead of doing the work...as a public person what you do has a ripple effect in more ways that you imagine. Your personal abuse enables people to use you to destroy the medical opportunities of innocent and ill children. Stop....Think....and be aware.

Savy business people look at the current situations and very long term paths. They are not like you or I struggling to make it with a day to day, maybe even a few years planned. With these guys, everything is planned waaay in advance. It is NOT uncommon for them to have a 20 year plan. Business moves and scenarios are calculated and maneuvered into place. This is what they do, this is the time they can afford to wait. They have the resources and business smarts to do it all.

So thinking from that mindset, could it be possible....that in order to sway public opinion against growth hormone, that "they" had to dangle the carrot (the benefits of growth hormone) out there knowing that some high profile people who struggle to stay on top would jump on it.....abuse it...and get caught?  Once it happened..."they" could use that public curiosity and media to turn public opinion again growth hormone all together? Hmmmm
Stop....Think...and be aware. 

Saturday, March 12, 2011

So much for medical advancements

Ok- so now things are normal for my daughter- thank God! Now all we have to focus on is getting her son (with many indications of an autoimmune- maybe GH problem but tests are conflicting) some help! He is only 5 years old, has autoimmune problems like arthritis, psoriasis and now his bones are literally dissolving! OMG!

And I went to a medical conference last week and was very fortunate to get some one on one time with one of the country's leading adult endo's to explain our family history and my personal medical "woe's". He said I needed better care and that it looked like someone had dropped the ball on my issues for decades! At what point do we take a side and believe anyone? I think the answer to that question is when we actually start feeling better! And that has not happened for me yet. But after speaking with him....maybe there is light at the end of the tunnel.

On a good note, another mom who I have been helping for 3 years now (her daughter is now 28 and was on GH as a child but the adult endo's don't want to "revisit" that possibility) is finally in competent care and after gaining weight, loosing hormone control on many fronts, sleeping non stop, loosing muscle etc....is finally- FINALLY getting back on the drugs she should never have come off of...There are some miracles in this world! YAY!

So for now- I keep trying to get up each day and hope that my heart rhythm holds up long enough for me to get to someone with good knowledge and skills! Here's to hoping!!!

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!

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."

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

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!