FYI: Growth Hormone bill

[mpalmer118]

I ran across this on another board and thought I should share it here.

CALL TO ACTIONSTATUS: 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.orgMy 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:

No faxing of prescriptions- currently all GH prescriptions are faxed
No mailing of drugs- most all shipments are currently mailed- this would burden families to make more trips to the doctor
Require that families physically “see” the endocrinologist every 30 days for a new prescription-

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
this increases the co-pay to families for additional physician appointments and co-pays every 30 days instead of every 3-6 months
many physicians are not licensed to write prescriptions for Schedule III drugs
the additional co-pay for the drugs would be a burden MANY families already stretched to capacity could not afford
Delay of shipment

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.
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.Like many of you, I am just one person... but together we parents can help make a difference. I need your help. Sincerely,Jamie Harvey Mom of Courtney and Ashley, 2 growth affected children
HERE IS A SAMPLE LETTER for Emails TO THE SENATORS AND REPRESENTATIVES-
Copy and paste the letter below to your senators and representatives. But remember- calls are much more helpful!!!!
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. I 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:

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.
Growth hormone is not currently classified as a Scheduled drug – it is a hormone.
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.
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.
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 whoexperience 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.
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, including pituitary or hypothalamic disorders or other medical need including ISS; and for adults with GHD/AGHD. Many Of Those Athletes And Celebrities Who Have Created This Situation WereSupposed 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]
The MAGIC Foundation
6645 W. North Avenue
Oak Park, Illinois
(708) 383-0808
Email responses or questions to: jamie@magicfoundation.org

[Carly'sMa]

After incredible efforts yesterday from the Magic People - Yahoo group, the bill is not active right now. The Magic Foundation got Senator Schumer to hold the bill for further review so that it won't hurt those of us with children on growth hormone.

I even got my mother to call Schumer's office becaue she lives in NY. The aide in his office said that they were flooded with calls. I told her what to say but she added some of her own flavor to it. She said that the people who legitimately need growth hormone shouldn't suffer because of some "doofy" ballplayers. LOL

Any how, I'm calling Kennedy's office today (one of my senators) to see where things actually stand.

[mpalmer118]

I'm so glad, I was thinking of Carly when I was reading this.

[Suecr]

This one caught my attention, Hayley's pituary gland produces NO GH, due to damage, so needs the supplement. I live in Massachusetts as well and will contact senator Kennedy. Thanks for the information.

[lacyndarella]

reposting on myspace.

Lacy

[Suecr]

I spoke with Hayley's endocrinologist about this today, he said there would be great resistance from the medical community.