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Families have requested that I post a sample of the letter sent from MAGIC to use as a guide for their emails to the members of Washington state legislature. Below is text from what was sent. Each one was personalized to each Representative and Senator-otherwise it is exact.
February 8, 2011
Senator Nick Harper
226 John A. Cherberg Building
PO Box 40438
Olympia, WA 98504-0438
RE: HB 1496 and SB 5632
Dear Senator Harper ,
The State of Washington has proposed legislation (HB 1496 and SB 5632) which will negatively and dramatically impact the lives of ill children. As co-founder of The MAGIC Foundation, and representing more than 25,000 affected families, I ask for serious and immediate reconsideration of your support for this legislation.
SB 5632 and HB 1496 are the quintessential backdoor, targeted bullying of ill children (and all others whose lives depend upon injectable medications for basic survival). It “goes after” children whose parents have private insurance which (most) already provide for a syringe or pen device disposal avenue. So what is the point? Increasing costs to the pharmaceutical companies will ultimately trickle down as an increase cost to the patients. Moreover, while this may seem to be a small matter, it is not a small matter for those whose very lives depend upon these medicines to literally be alive each day.
If the goal of this bill is earnestly to protect waste management employees, why are the concerns of broken glass, rusty nails, dirty diapers, can lids etc. not addressed in this legislation? These kinds of items are much larger, far more dangerous, and more abundant in household garbage as compared to syringes or pen devices. Businesses which regularly utilize syringes etc. such as hospitals or labs have appropriate waste disposal methodologies already in place. So again, the ultimate recipient suffering the consequences of this bill is the individual whose life depends upon these medicines for survival.
Two years ago, Senator Charles Schumer proposed legislation which would have impacted MAGIC families. Only 4 days prior to the bill’s scheduled (uncontested) passing, our families became aware of the legislation. Parents physically drove and flew went to Washington, DC and knocked on doors. Thousands upon thousands of additional families called, emailed, and faxed their Senators. The switchboard in DC was jammed with more than 7,000 calls from alarmed parents on Monday morning alone. Families were very upset and preparing to put their children in front of the media for help. Fortunately, upon learning of the potential problems with the bill, the authors declined to take it to the floor.
Representing the families of MAGIC, I can say that HB 1496 and SB 5632 are seriously problematic for ill children. How much must families pay…how much must they endure…just to survive in a world that seems to hate the ill children in our world?
Additionally, how can we hope to encourage free enterprise drug companies to conduct research into new drugs, most of which will be injectables due to the new biotechnologies, if they are constantly fighting more fines, fees, and restrictions? It simply will not happen. The misalignment of fees to those companies perceived as a money train (pharmaceutical companies) will only serve to hurt future scientific discoveries and cost these precious struggling children.
As you may have been unaware of the problems, we find with this legislation, I thank you for the opportunity to present our view.
Again, on behalf of the entire foundation, I strongly ask that you withdraw your support of HB 1496 and SB 5632.
Respectfully,
Jamie Harvey
Co-founder
The MAGIC Foundation
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