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New Legistation - PREMIE Act

JLCMomma - 04:44pm May 12, 2005 EST

I just wanted to make sure that people see this. I have it posted in Get Involved also.

"Preemie Act"

(older msg: 24)

Melissa M. - Jun 24, 2005 5:21 pm (#25 Total: 60)

Mom of 25 weekers, Now Age 5 & 1.2 (3 surviving quads)

TEXAS BiLL INFORMATION:JUST OFF THE PRESS

Wonderful JOB! JLCMomma...your updates are GREAT...and your spirit of advocacy is AWESOME too.

This just in from TX: thought I would SHARE-

All the hard work put forth by Texas volunteers and staff during the
79th
Texas legislative session has definitely paid off; mothers and babies
will benefit from the successful advocacy efforts of the March of
Dimes!

On June 18, 2005, Governor Perry signed two key pieces of March of
Dimes-supported legislation into law:

House Bill 790

House Bill 790 requires the Texas Department of State Health Services to expand newborn screening (through the most cost-effective
method possible - public or private lab) to include as many of the 29
disorders in the core uniform panel recommended by the American College
of Medical Genetics and the March of Dimes as possible. Texas
currently
screens for 8 disorders. Enough funding has been appropriated to
include up to 19 additional disorders, for a total of 27. Expanded
screening will be phased-in, beginning in November 2006.

Senate Bill 1 (appropriations bill)

Senate Bill 1 contains $5.4 million for the biennium needed to fund House Bill 790 for expanded newborn screening.

Senate Bill 1 contains funding to restore dental and vision benefits for children on the Children's Health Insurance Program
(CHIP).

Senate Bill 1 contains an additional $12.4 million for CHIP caseload growth, adding about 20,000 more children to the enrollment
estimates for the biennium.

Senate Bill 1 also contains a rider that requires the Texas Health and Human Services Commission to request additional funding from
the Legislature if there is a CHIP shortfall BEFORE imposing a waiting
list, enrollment cap, or cuts to eligibility or benefits.

Senate Bill 1 contains funding to maintain the recently restored (due to advocacy efforts of the March of Dimes in 2004) Medicaid
eligibility threshold for pregnant women at 185% of the Federal Poverty
Level for the 2006/2007 biennium.

Senate Bill 1 contains level-funding for the Texas Birth Defects Registry ($2.8 million for the biennium). However, March of Dimes will
work with the Texas Department of State Health Services to secure
additional funding in the event either of the Registry's two federal
block grants are cut.

We are still looking at the possibility of a ceremonial, public signing
for House Bill 790 by Governor Perry. If such an event is confirmed, I
will let you know.

As you have probably heard in the news, Governor Perry has called a
special session to deal with public school finance reform. The House
and Senate are both expected to pass their versions of the bill this
week and then the remainder of the 30 days will be spent in conference
committee trying to find a compromise between the two versions. March
of Dimes will monitor the activity to ensure that any financing
considerations do not negatively impact non-profits.

Thank you!

Jorey

Jorey Berry, Regional Director of Public Affairs

JLCMomma - Jun 24, 2005 7:52 pm (#26 Total: 60)

Melissa

That is wonderful news. I am sure the new legislation will do so much for your state.

Kandice Boone - Jul 7, 2005 11:09 pm (#27 Total: 60)

wHAT CAN I DO ? I AM IN UTAH?

JLCMomma - Jul 8, 2005 4:23 pm (#28 Total: 60)

Kandice

I got started by typing up our family's experience. I included in my letter some statistics about preterm birth from the MOD website, for Utah the link is Utah Statistics. One interesting note to add in your letter might be that the state of Utah has the 2nd lowest percentage of women receiving adequate prenatal care in the country, ranked 49th.

So basically my letter had an introduction, some statistics, my personal story, and then at the end I stressed how important research is and asked them to co-sponsor and support The PREEMIE Act, which is S. 707 in the Senate and H.R. 2861 in the House of Representatives.

In the Senate I suggest emailing the Senators from Utah

Bob Bennett

Orrin Hatch

You can also email the others on the committee that I have previously posted.

In the House you can email your Representative which you can find by entering your zip code. House of Representatives

I have also gotten some of my friends and family, especially from other areas and states to contact their legislators to try to reach as many as possible. My representative added his name to be a co-sponsor just days after I contacted him, so you can make a difference.

JLCMomma - Jul 8, 2005 4:23 pm (#29 Total: 60)

"Preemie Act"

I just wanted to make sure that people see this. I have it posted in Get Involved also.

"Preemie Act"

Ginger Adams - May 12, 2005 11:46 pm (#30 Total: 60)

Hi I had my little girl at 26 weeks. I like the idea you have. Anything that I can do to help just let me know.

Melissa M. - May 16, 2005 5:56 pm (#31 Total: 60)

Mom of 25 weekers, Now Age 5 & 1.2 (3 surviving quads)

JLC Momma,

Thank you so much for passing this information along...what is going on at the legislature is very important to the heart of advocacy...a heart that many parents on SHARE obviously have...and I am grateful for it!

Melissa Middleton

moderator - May 16, 2005 6:15 pm (#32 Total: 60)

The Preemie Act

Hello all of you very inspiring and caring SHARE parents!

I noticed the posting about the Preemie Act and wanted to give you a bit more information as to how you can help.

ADVOCACY FOR MOTHERS AND BABIES

The March of Dimes is working in the Congress with senators and representatives from both parties to enact federal legislation related to prematurity. Two bills are being proposed. The PREEMIE Act (Prematurity Research Expansion and Education for Mothers Who Deliver Infants Early) would expand research into the causes and prevention of prematurity and enhance education and support services. The second bill, the Prevent Prematurity and Improve Child Health Act, would increase access to health coverage for women, infants and children.

How can you help? Contact your senator at 202-224-3121 and say that you are calling to support Bill S.707. March of Dimes appreciates your support of this very important bill!

Warmly,

Liza Cooper. LMSW
Director, March of Dimes NICU Family Support

Melissa M. - May 16, 2005 6:25 pm (#33 Total: 60)

Mom of 25 weekers, Now Age 5 & 1.2 (3 surviving quads)

Thank you so MUCH Liza for passing on that awesome bit of information!

Melissa Middleton

Nancy White - May 16, 2005 9:20 pm (#34 Total: 60)

SHARE Technical Helper

Linking this Discussion

FYI, I have made it so that this discussion also shows up in the "Get Involved" folder! Thanks!

LogansMom28w - May 17, 2005 2:47 am (#35 Total: 60)

My 3 boybarians are 4, 5 and 7.

My letter will be going out this week.

Just to clarify... you want us to write to the Senators from our individual states, correct? I don't want to send it to the wrong place and have my effort be for naught.

ie: Being from IA, I would write to the Senators who respresent Iowa in DC. Am I on the same page?

Thanks!
Darcy

JLCMomma - May 17, 2005 5:50 am (#36 Total: 60)

In Committee

Ok. Right now, from my understanding, this bill is in committee. More specifically the Health, Education, Labor and Pensions Committee. From what I can tell a similar bill was brought up last year but never made it out of committee. So I believe the first thing to do would be to contact the ones on this committee. Of course, they probably will only pay attention to the people from their state that contact them, but I plan to contact each one anyway. The committee consists of:

Michael Enzi- Wyoming

Bill Frist- Tennessee

Lamar Alexander- Tennessee

Richard Burr- North Carolina

Johnny Isakson- Georgia

John Ensign- Nevada

Mike DeWine- Ohio

Ton Harkin- Iowa

Jeff Sessions- Alabama

Edward Kennedy- Massachusetts

Orrin Hatch- Utah

Christopher Dodd- Connecticut

Barbara Mikulski- Maryland

James Jeffords- Vermont

Jeff Bingaman- New Mexico

Jack Reed- Rhode Island

Patty Murray- Washington

Hillary Clinton- New York

Pat Roberts- Kansas

Judd Gregg- New Hampshire

Shannon Eiser - May 17, 2005 10:46 am (#37 Total: 60)

JLC - You Rock

Okay I have to admit I am lazy. I don't usually like to get involved but when I saw the list and realized that my senator was on the committee AND Georgia has the highest rate of prematurity in the country, I just could not do nothing. I am going to send Johnny an e-mail reminding him that Georgia is the leading state in prematurity and somthing needs to be done. I challenge all of the other Share parents that are like me, they think other people will take care of it, to do the same!

Shannon

Melissa M. - May 17, 2005 11:00 am (#38 Total: 60)

Mom of 25 weekers, Now Age 5 & 1.2 (3 surviving quads)

So, if your senator is not on the list...like from Texas...and there is no one from Texas on the committee...then I guess I should contact all on the list and then my senator who is not on it....right?

Okay...will do...

Melissa Middleton

JLCMomma - May 17, 2005 3:13 pm (#39 Total: 60)

Thanks guys!

I just want to thank everyone that has responded so far. Hopefully we can make enough noise to get some attention!

Darcy, I know one of your senators is on the committee, although I just noticed I spelled his name wrong.

All that typing and apparently not a lot of proofreading.... but then again, I'm just kinda spacey like that. I hope to get all of my family from up in Iowa to contact him too.

Shannon, thank you for contacting your senator. Here in Tennessee we have the 4th highest rate. I am hoping since the bill was sponsored by Senator Alexander and since Senator Frist is a doctor that they will really push for it.

Melissa, sounds great to me. As many politicians as we can let know about this bill, the better. I plan to contact as many people as I can. I didn't put every Senator's link it, I'd still be working on it.

But each individual can find their senators at U.S. Senate .

Thank you in advance to all the others that can help. We can help put a face to the issue. Please SHARE your experience. Thanks.

[Last Editor: JLCMomma, May 17, 2005 8:14 am. Total Edits: 1]

LogansMom28w - May 17, 2005 4:40 pm (#40 Total: 60)

My 3 boybarians are 4, 5 and 7.

Committee list and links to the senators.

WOW! Thanks for those awesome links. You saved me some research time. I will be drafting my letter and as one of Tom Harkins constitiuents, let's hope his ears are open.

That was GRRREEEAAATTTT! Thank you, thank you!

moderator - May 18, 2005 2:10 pm (#41 Total: 60)

The Preemie Act - FOUR Easy Steps to Help

A bit more information on what to do to support The Preemie Act..See the four easy steps below....

The Preemie Act

Hello all of you very inspiring and caring SHARE parents!

I noticed the posting about the Preemie Act and wanted to give you a bit more information as to how you can help.

ADVOCACY FOR MOTHERS AND BABIES

The March of Dimes is working in the Congress with senators and representatives from both parties to enact federal legislation related to prematurity. Two bills are being proposed. The PREEMIE Act (Prematurity Research Expansion and Education for Mothers Who Deliver Infants Early) would expand research into the causes and prevention of prematurity and enhance education and support services. The second bill, the Prevent Prematurity and Improve Child Health Act, would increase access to health coverage for women, infants and children.

How can you help?

1. Contact your senator at 202-224-3121

2. Inquire about whether your Senator or Representative is a cosponsor of the bill S.707 - The Preemie Act

3. If the answer is no, ask that your Senator/Representative add his or her name as a bill cosponsor

4. Also ask to be informed about whether the Senator/Representative has agreed to be a cosponsor

March of Dimes appreciates your support of this very important bill!

Warmly,

Liza Cooper. LMSW
Director, March of Dimes NICU Family Support

Brenda Rante - May 20, 2005 12:44 am (#42 Total: 60)

THANK YOU!

Another Great Step for Preemies! Thanks for the info....will follow through!

Brenda & Benjamin (34 weeker born 12/24/99 with NEC)

Karri - May 21, 2005 8:50 pm (#43 Total: 60)

Mom to 4 amazing kiddos!

Thank You!

Thanks for sharing this important information with all of us!! We can start now with the letter writing in order to support this bill!

I'm new to the world of politics, honestly, they just don't interest me that much. This bill is changing that for me. I need some pointers on now to navigate the link to determine if my Senator is supporting this bill.

I went into the link and if I did things correctly, I found that my senator (who is also a father of 2 young children) was not on the list. I'm in Illinois. If anyone can give me a heads-up as to wether I'm correct on this or not I would appreciate it.

Thanks,
Karri

JLCMomma - May 21, 2005 10:33 pm (#44 Total: 60)

Karri

Neither of the Illinois senators is on the committee that the bill is currently in. The contact forms for your senators are:

Dick Durbin

Barack Obama

My plan is to send my letter to all of the senators on the committee, I would then send it to my state senators also, it just so happens that they both are on the committee. I am just going to type up a master copy and then paste it in each form.

From what I understand the bill was introduced and sponsored by Senator Alexander from TN and cosponsored by Senator Dodd from CT. I would just ask each individual senator to support the bill.

JLCMomma - May 23, 2005 3:03 am (#45 Total: 60)

Yay!

I ...finally... got all of the senators on the list e-mailed. At the beginning of each letter I typed out that while I was not a resident of their particular state it did affect people in their state also, then I gave them some stats for their state. Then I typed out a summary of our story. Whether or not they are actually touched or it just gets lost in the shuffle, just by doing it I feel like I am honoring my son. *sniff* I must run and go give my Punkin' kisses...

Melissa M. - May 23, 2005 5:55 pm (#46 Total: 60)

Mom of 25 weekers, Now Age 5 & 1.2 (3 surviving quads)

Good Job!

Thanks JLC---

You have really been working on this...you are helping to move this amazing spirit of SHARE! Hugs!

Melissa Middleton (mom of 25 wk'r quads. Alex *deceased*, Benjamin, Callie, and Donovan: 23 months old)

JLCMomma - May 23, 2005 6:25 pm (#47 Total: 60)

Thanks Melissa!

I guess I have always been one of those people that it takes alot for something to motivate me to the point of action, but when it does, watch out!

Hopefully we can make enough noise to get some attention. I know that if we can get all of our stories of triumph, as well as those of the heartbreak, it would take an awfully callous person not to realize that something needs to be done!

LogansMom28w - May 24, 2005 7:20 pm (#48 Total: 60)

My 3 boybarians are 4, 5 and 7.

Well, sometimes it is the straw that breaks the camels back. Maybe individually we're not super mighty, but as a united force we're one-heckova-somethin' to be reckoned with!!! My letter should be arriving to Senator Harkin's desk any time....

JLCMomma - Jun 14, 2005 5:11 pm (#49 Total: 60)

Just Wondering

If anyone has gotten a reply yet? I sent my letters by email and it said that replies would probably come by snail mail and not email. Just wondering if anyone has heard back yet.

Jen S - Jun 23, 2005 8:11 pm (#50 Total: 60)

Haylee's mom former 26 weeker formerly jens6896 : ) Finally able to log on!!! : )

Preemie Act

Hi all,
I just wanted to let you know that I have FINALLY received a letter from my senator letting me know that he is on the HELP committee and will take into consideration my request if the S 707 comes up. The letter was dated June 4 and I just received it yesterday 6/22. So I guess it takes quite awhile to get a response. I just wish there were more Utah parents on Share so they know what is trying to be accomplished and get our voices heard here.

Have a great day everyone

Jen

JLCMomma - Jun 23, 2005 8:44 pm (#51 Total: 60)

*UPDATE*

I have some news on this front. The PREEMIE Act has now been introduced in the House of Representatives. This means that it is now much more closer to becoming a reality. Any legislation must pass in both the House and the Senate.

When I saw that it had been brought up in the House, I emailed my Representative. He emailed me back and he added his name on the bill as a co-sponsor, so apparently co-sponsors can be added at anytime.

So I guess the next step, for anyone that wants to help pursue this, would be to email your state's Senators if you haven't already. Find your Senators Then, email your Representative in the House. Find your Representative Tell them you story and ask them to co-sponsor and support these bills, S.707 for your Senators and H.R. 2861 for your Representatives.

I looked up the preterm rates for each state on the PeriStats section on the MOD page, so if you want to know where your state ranks nationally, just post here and I will let you know so you can add it in your letter.

Come on everybody, let's get the word out. All of us on here know how important this research is. Let's let everyone else know too!

If I sound overly excited, it is because I have just started having caffeine again after about 16 months.

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Kathryn:Mom&NICU Nurse - Jun 24, 2005 1:22 am (#52 Total: 60)

Marina 28w, Emma 36w, Olivia 34w 2 days

Re: *UPDATE*

I just emailed my senator. Just so everybody knows it was really quick and easy.

Sharlene+2 - Jun 24, 2005 1:07 pm (#53 Total: 60)

Mom to Taylor (14) and ^George Daniel^

Re: *UPDATE*

I just e-mailed my senator also, but couldn't figure out how to e-mail my representative. Guess she'll just get snail mail!

It was really painless & easy.

Thanks for sharing this information with us so that our voices can be heard nationwide.

monkey hugs to all PoP's
Sharlene

Melissa M. - Jun 24, 2005 5:21 pm (#54 Total: 60)

Mom of 25 weekers, Now Age 5 & 1.2 (3 surviving quads)

TEXAS BiLL INFORMATION:JUST OFF THE PRESS

Senate Bill 1 contains $5.4 million for the biennium needed to fund House Bill 790 for expanded newborn screening.

Senate Bill 1 contains funding to restore dental and vision benefits for children on the Children's Health Insurance Program
(CHIP).

Senate Bill 1 contains an additional $12.4 million for CHIP caseload growth, adding about 20,000 more children to the enrollment
estimates for the biennium.

(newer msg:6)

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