Update Archives

There are many separate documents included on this one page. They are provided for a historical overview of what has been transpiring, for families to use in their efforts with their personal US Senators communications, their local television, radio and newspaper reporters, as well as community groups supporting our efforts. As we are a working as quickly as possible - these documents are not always clearly separated. Therefore, we beg your understanding and encourage you to look through everything thoroughly. The most recent documentation is at the top of the page.

March 9, 2008- Notes from Mary Andrews

From Mary Andrews-CEO

It has been a week of twists and turns for many of us.  It is so very difficult for an accurate update as things change from hour to hour.  I will do my best to update you on the whole process we have encountered. As it is the weekend, nothing should change for another day or two.

We were fortunate enough to hold the passing of the bill literally hours before it was due to pass on Monday March 3rd. I need at this point to thank each and every one of you for helping. It would have never happened without all of your support. Walking in to Senators offices on the hill, after introducing myself as being with The MAGIC Foundation, all eyebrows raised and comments were made such as “Okay tell everyone they can stop calling now!” I received a personal call from Senator Schumer, early evening on the 3rd, saying he held the bill and was going to work with us to discuss our issues. He wanted to try to resolve the problems we were concerned about. I was relieved. However, I later discovered that only slight changes were made (overnight) to his bill and it was resubmitted to the legislative council. I was not pleased for they did not work with us to resolve the issues as I had been told. Later, we proceeded to share with them some alternative language, which could become our bill, in the event we would need to move forward in that direction. Another huge thanks to all of you that put us in touch with your friends and family members with expertise in the political arena. Again, we would have never moved ahead so quickly without all of this support. And I would never have known how to move in the right directions without their support.

To make a long story short, the bill was written a third time, still labeling growth hormone as a schedule III controlled substance.  I received a call at noon on Friday advising me as to the bill .  We rejected it stating that no bill will be acceptable with growth hormone listed as a controlled substance.  Fortunatley, as the days flew by last week, it appears as if we picked up some support from other Senators that may be willing to support the language we are proposing.  I am still hoping Senator Schumer will reconsider.  Our language does support closing the loophole Senator Schumer’s bill addresses pertaining to the abuse of growth hormone.  We have made it very clear to him that we are opposed to abuse of growth hormone. The penalty for abuse would be a felony under our alternative language, but growth hormone would NOT be listed as a controlled substance.

So here is where we are;  Another Senator's staff and I plan to meet once again with Senator Schumer’s staff early next week.  There are several “holds” on the bill so it cannot move too quickly (at least not in the next several days).  Hopefully, now that everyone understands we will not accept growth hormone as a controlled substance, we can come to an agreement.

Several of you have done some homework regarding a controlled substance, in particular schedule III, and have asked many questions.  I hope this short explanation will help.  Each state regulates a controlled substance.  We have checked out the “drug laws” for each state and I must admit I have had some good laughs.  Several states listed that for a schedule III, example for prescriptions, “some restrictions apply”……….no kidding, but what are they??  We have spoken to some retired pharmacists that are now gathering information for us, for we are hearing there are restrictions in many states which will affect our families.  Most schedule III drugs are allowed a 6 month prescription with 5 refills in that period.  Is this 5 times you must refill with a co-pay each time in the 6 months?  Some states again will tell you there are “some restrictions”.  We understand that to be a controlled substance that the drug is considered as addictive or a dependency ….are they talking about growth hormone….addictive???  How can they even think about scheduling growth hormone when it is NOT an addictive drug?  BTW….it’s not even a drug, it’s a hormone!

We’ve learned even more about travel with a controlled substance.  You need to declare the drug before leaving the country (and entering)………..I am assuming that even means Canada, Mexico and other areas that are out of the USA but not off the continent.  There are more rules about original packaging as well and who knows what else.  What matters most is that growth hormone has received some truly bad publicity lately with all the investigations of athletes abusing the drug.  Each state now, if growth hormone is scheduled, can do whatever they please.  The insurance companies would love the 30 day refills for the co-pays could triple (guess they need more of our money).  Can this bad press lately make the state legislators want more restrictions in their state to assure no abuse??  There are no guarantees.  So we have taken the position that we will do what the majority of you have requested and that is try to stop now what can be damaging to our kids after 180 days of the bill passing and in the future.  We could agree to the bill and if state regulations make restrictions even tighter on growth hormone I know you would all be angry that we did not do what we had to do when we had the chance.

So, I will update you again on Tuesday unless the meeting does not take place.  Please remember that you were all responsible for stopping this bill temporarily and can have a great impact on what happens in the very near future.  We will give you the path to take, if necessary, to try and ensure that a bill does not pass listing growth hormone as a controlled substance.  Look at the impact we had from all of your help………..hopefully this future impact will end in a positive result for our kids.  They deserve to grow and stay healthy without a label on their heads!!  Let’s continue to pull together as we did last week.  Let’s hope Senator Schumer will think about our kids.  We’ll fight for our kids. We are MAGIC!!   

So when you hear from us again and we may need your help…….remember we are all doing this for our kids.  Please respond quickly.

Thank you all for your support!  You are all great!  And a special thanks for everyone that has contributed in your own way. You all know who you are.  You have all proven you are all MAGIC!

Update March 7, 2008 4:41

We understand that everyone is working hard to reach their Senators to let them know about the petition and their personal thoughts about GH. We appreciate everyone's personal dedication to the children and this effort. We assure you that we are trying to update everyone via this section of the website as quickly as possible. Although as soon as we prepare an update.... things change and we have to begin again. Please continue your efforts, and bear with us as we are working VERY hard too. Thank you.

Update March 6, 2008

1:43 p.m.Today, we are pleased to announce that MAGIC is working with many Senators to resolve our legislative concerns. We are hopeful that this will be resolved. Add your voice to our efforts

IMPORTANT ANNOUNCEMENT TO ALL FAMILIES…PLEASE READ

As you know, MAGIC families were able to stop the passing of a bill on Monday evening by Senator Schumer to make growth hormone a Schedule III Controlled Substance.  He agreed to rewrite the bill but we have not seen, as of yet, the language he is proposing. In any event, we remain concerned about making growth hormone a Scheduled III Controlled Substance.  In support of our families we believe that it is now time to communicate with the major sporting organizations who support the original Schumer bill to tell them that we will not be sacrificed because of their inability to police their sport.  

WE NEED YOUR HELP NOW.  We have been joined by other support organizations and will continue our battle to protect our families.  We are asking you to call the athletic organizations that have created this problem due to the abuse of growth hormone with athletes. We need you to make more calls for us as you were very successful in helping us stop the bill on Monday.

Here are important bullet points to use during your communication TODAY.  Please make every effort to stop what you are doing for the sooner they receive the calls the better………..but it needs to be immediate.  Here are some points:

START WITH THIS STATEMENT:
*Protect our kids by stopping growth hormone from becoming a controlled substance.  
*Police the athletes, not our children. It is not fair to stigmatize our children for using a medication they need.
*Stop those abusing growth hormone, don’t stop our children from receiving important and often life saving medicine for their medical conditions.
* A scheduled III controlled substance will alter the use, distribution and ultimately the long term access of my child’s medicine.
* Punish the abusers, not our children

START CALLING………………
1. Major League Baseball: 212-931-7878, Rich Levin, Senior Vice President, Public   Relations
2. National Football League: 212-450-2000, Joe Browne, Senior Public Relations - Fax: 212-681-7573
3. National Collegiate Athletic Association:
317-917-6762, Erik Christianson, Director of Public and Media Relations - Fax: 317-917-6762
4. National Basketball Association: 212-407-8000
5. United States Olympic Committee: 719-632-5551
6. United States Anti-Doping Agency: 866-601-2632
7. Partnership for a Drug-Free America : 212-922-1560

March 3, 2008

CALL TO ACTION

STATUS:  URGENT
               RE: Senate Bill 877 / House Bill 4911
               ISSUED TO:  All parents, caregivers, and people concerned about children’s medical care.
DUE DATE:  Tomorrow- Monday, March 3, 2008

(Please scroll down and read the entire message...you can use this personal letter as your own or write your own to include to your friends and family---drafted with the hours of labor from Leanne Manning- thank you!!!!)  MAGIC representatives are already flying to Washington- if you know someone – anyone who could help them get to a committee representative in DC-contact Jamie immediately! Jamie Harvey, Ph: (220) 247-6258 or email jamie@magicfoundation.org

My Letter to You…Dear parents, family and friends,

Congress is set to vote on a bill THIS WEEK which reclassifies Growth Hormone to a Schedule III drug. Doing this will place such tight restrictions on prescribing and distribution of the drug that many medically needy (and FDA authorized) children will not be able to obtain it. Additionally, according to the FDA the majority of physicians in this country do not have the necessary licensing to prescribe this level of medicine. This is the direct result of the high profile athletes and celebrity abuse.

I do not want to stop S877/HB4911. I am in favor of preventing the abuse of growth hormone.  The problem is that this bill does not consider the children who medically need this drug.

If passed this bill will:

Allow additional state restrictions such as:

1. No faxing of prescriptions- currently all GH prescriptions are faxed  
2. No mailing of drugs- most all shipments are currently mailed- this would burden families to make more trips to the doctor
3. Require that families physically “see” the endocrinologist every 30 days for a new prescription-
   1. many families have to drive hours to see the closest endocrinologist available to them- this would have to be much more frequent and time lost from school for the children, and work for the parents would increase their burden
   2. this increases the co-pay to families for additional physician appointments and co-pays every 30 days instead of every 3-6 months  
   3. many physicians are not licensed to write prescriptions for Schedule III drugs
   4. the additional co-pay for the drugs would be a burden MANY families already stretched to capacity could not afford
4. Delay of shipment
   1. Changing the Schedule Class of this drug would require that all supplies of GH would be pulled from the shelves to be sent back to the companies for labeling appropriate to a Schedule III drug. This would cause a “no supply” time for every single child being treated.
   2. This is a Life Threatening Issue for children with hypoglycemia need for GH as without the medicine they face comas or worse if they do not have a balance of GH.

We need the opportunity to help educate our elected officials regarding the impact of their vote on this issue. 

We need to ask them to vote NO on S877/HB4911 as it currently stands. We are not asking that the bill be “killed” rather that we are allowed time to make help them build provisions into the bill which would protect the little children who will be directly and immediately affected.

The children need a miracle... each one of the federal senators and representatives must be called Monday. 

Here is how you can help:
1. Contact as many senators and representatives as possible.  You can find their contact information at   http://www.visi.com/juan/congress/ Emails are great, but calls are much better, both are best. This is time sensitive and this must be done Monday!  It is our understanding that the most helpful calls will be to Enzi ( Wyoming and  Schumer (NY).
2. A sample letter you can cut and paste is provided below but remember- emails are lost…calls jam up phone lines and are noticed! Ask to speak with the Health Legislative Assistant as you will never reach a Congressman etc. But the assistants…are VIP’s!

3. When making calls- keep this paper and points  handy for reference during your call.

4. FORWARD this email to everyone you know, we must make a loud noise in order to be heard.

Subject: Senate Bill 877 / House Bill 4911

I ask that you Vote NO to bills- S.877 / H.B.4911 or at least HOLD proceedings on the vote until provisions can be added to protect the affected children.

We support abolishing illegal prescribing and distribution of growth hormone. However, as the bill currently stands it will be at the detriment of the children!

Problems with this bill include:

1. Methods to protect the little children in need of this drug are not included and need serious consideration prior to implementation. As it currently stands the little children and their families will be dramatically and horribly impacted.  
2. Growth hormone is not currently classified as a Scheduled drug – it is a hormone.
3. Scheduling this hormone as a drug requires all sources of the medication to be pulled off of the pharmacy shelves, relabeled, and stocked back only into pharmacies which qualify for such drugs.  
4. Delay or denial of coverage from insurance carriers, as new prescriptions would have to be obtained, submitted for approval, processed and reauthorized by health insurance carriers.  
5. Detrimental To Children's Health:
   * Elimination of flexibility in prescribing for individual cases; for example: patients who need medication dosages adjusted temporarily due to another health issue that requires a temporary adjusted dose, patients who
   experience temporary side effects, or pubertal patients. 
   * Physicians would also be limited or restricted in prescribing only certain brands of growth hormone for certain growth-related diagnoses.
6. Burdensome to Families and Caregivers:
   * High cost and travel to obtain written prescriptions...Pediatric Endocrinologists are not available everywhere. Some states only have 1 such qualified specialist.  
   * Low income families may not have transportation or means to miss work to numerous appointments.
   * Increased financial burden on families due to more frequent co pays. 

 A possible inclusion which would help eliminate my concerns would be as follows: Exceptions to this ruling include medical prescriptions written by endocrinologists who have diagnosed a child for any classification of GHD, Russell-Silver Syndrome, Small-for-Gestational Age, Depto Optic Dysplasia, Optic Nerve Hypoplasia, Turner Syndrome, Noonan's Syndrome, Intrauterine Growth Restriction, pituitary or hypothalamic disorders (resulting from tumors, injury or birth defects) or other medical need including ISS; and for adults with medically documented GHD/AGHD- just to name a few.  

Many Of Those Athletes And Celebrities Who Have Created This Situation Were
Supposed To Be Heroes For Our Children...
Here Is Your Chance To Be Their Hero.

GIVE VOICE TO THE CHILDREN
WHO NEED CONSIDERATION AND PROVISION IN THIS BILL!
PLEASE VOTE NO,
DO NOT PASS S877/ HB 4911 AS WRITTEN

Sincerely,
[INCLUDE YOUR NAME AND INFORMATION HERE]

Press Release
March 3, 2008
For Immediate Release
The MAGIC Foundation Responds to Human Growth Hormone Bill

Non-Profit Speaks Out Against Congressional Growth Hormone Proposal

OAK PARK , IL — March 3, 2008 —Congress is set to vote on a bill this week that would add Growth Hormone to the U.S. Controlled Substances Act as a Schedule III substance. The MAGIC Foundation supports preventing and abolishing illegal prescriptions and distribution of growth hormone. However, the new bill does not contain any provisions specific to the needs of children who medically need the drug. Growth hormone is erroneously perceived as a drug used exclusively for physical gain. Growth hormone deficient children need growth hormone to maintain a healthy heart, immune system, and much more other than physical growth. 

We ask Congress to vote NO on Senate Bill S877 / House Bill 4911 as it currently stands. Provisions must be made to protect children who will be affected. If passed, this bill will be detrimental to children’s health. 

Making growth hormone a Schedule III medication raises innumerable questions.  For example:

• Will prescriptions be required every month? Does this require a monthly office visit?
• Many families have to drive hours to see the closest endocrinologist available to them. More physician visits means increased medical expenses for families, many who already are struggling to afford the high costs. 
• Will expensive co-pays for families be dramatically increased?  
• Will ordering and distribution of the medicine be impacted due to regulations regarding the faxing and shipping of the medications?  
• Will dosing for growth hormone be impacted, thus interfering with the physician/patient relationship?  
• Many states may have more restrictive regulations in place governing controlled substances. Has Congress explored the impact of this on the patient community? 

An estimated 2 million children in this country are affected by short stature and many more have a problem that may radically affect the quality of their lives. For decades, families of children with a medical need for growth hormone therapy have faced discrimination from insurance companies and other parties regarding their child’s need for this vital hormone therapy. Parents of children in need of growth hormone are not only concerned about their child’s height when faced with the decision to utilize growth hormone therapy; they are also concerned about the non-physical factors that affect the long-term quality, possibly even the length of life that a child may have if they do not have the hormone.

It would be unconscionable for Congress to move this legislation without taking into consideration its impact on the families of affected children.

About The MAGIC Foundation - The MAGIC Foundation is a national nonprofit organization providing support services to the families of children afflicted with chronic and critical disorders, syndromes, and diseases that affect their growth. For more information, contact 708-383-0808, or visit www.magicfoundation.org.

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