New Legistation - PREMIE Act

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)

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!

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....

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.

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

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.

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

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

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

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

wHAT CAN I DO ? I AM IN UTAH?

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.

Hi everyone! I am a nursing student at Northwestern State University in Shreveport, LA and am currently taking a community health class. Our instructor has requested that each student write a "political letter" to our senator or representative. In December of this year I plan to begin working for Women's Health services at a local hospital, so I began by searching for a bill in that area. I found H.R. 2861 and knew instantly it was the one. (I have been precepting in postpartum and the labor unit for over 6 months now and have seen many babies born early.) While doing research on my topic, I found your postings. I think it is wonderful that y'all are taking action. I will soon write my letter and send it. I hope that we can impact the final decision! God bless!

Katie,

Thanks for taking this on!!! It means alot to us PoP's!

Hugs!
donna

Hi everyone, please help the March of Dimes make the voice of premature infants and their families heard in the halls of Congress. In conjunction with Prematurity Awareness Month, the March of Dimes is implementing a national grassroots campaign to increase the number of cosponsors for the PREEMIE Act (S. 707/H.R. 2861). This legislation would expand research into prematurity; increase public and health professional education; and provide federal support for prematurity related health services. We need you to contact your Senators and Representative and urge them to cosponsor the PREEMIE Act. By sharing your personal story with members of congress, you can make a difference.

Please visit the March of Dimes advocacy website for further guidance and a sample letter.

The March of Dimes appreciates your efforts in support of this very important bill! Thank you

Emil Wigode

Deputy Director, Federal Affairs

March of Dimes Office of Government Affairs