Congenital Heart Futures Act – Take Action Today!

July 15, 2010
By

The Mended Little Hearts, in partnering with other CHD organizations, has achieved great success in Federal legislation with the passage of the Congenital Heart Futures Act. Now, the lawmakers must put money behind what they agreed to in this law. For more information about the Congenital Heart Futures Act, please visit our advocacy page.

TAKE ACTION RIGHT NOW:

The budget process is moving along. The people who assign the money (appropriations) are going to be making their lists of what to include in the budget: The House Appropriations Committee’s Labor, Health and Human Services (HHS) and Education Subcommittee is scheduled to mark-up the FY-2011 Bill this afternoon! The Senate Subcommittee will follow shortly.

Urge your Senators and Representatives to contact the Chairpersons of the Health and Human Services Appropriations Subcommittees to ensure they include money in the Fiscal Year 2011 Labor, Health and Human Services Appropriations bill to fund the congenital heart disease surveillance system at the Centers for Disease Control and Prevention.

You can do this in two easy ways:

  1. Call their office today.
  2. Write your legislators Call their office today.

CALL YOUR LEGISLATOR:

  1. Find the contact information for your legislator at www.senate.gov or www.house.gov
  2. Call the number listed for the Washington Office.
    1. Ask to speak to the Legislative Staff who deals with Health Issues. You may already have this person’s name and direct line from previous contacts.
    2. Encourage your members office to contact either Chairman Obey or Ranking Member Tiahrt in the House or Chairman Harkin or Ranking Member Cochran in the Senate to urge them to include a total of $7.25 million for the Centers for Disease Control and Prevention (CDC) to support data collection to better understand CHD prevalence and to assess the public health impact of CHD, including $3.75 million for a pilot adult surveillance system and $3.5 million to add CHD into the existing birth defects surveillance system.

WRITE YOUR LEGISLATORS:

  1. Find the contact information for your legislator at www.senate.gov or www.house.gov
  2. Letters can be written by hand or typed and faxed to your member’s office. You may send an email to a staff member you met during a Lobby Day visit or via the online form on the legislator’s website. CLICK HERE FOR SAMPLE LETTER
  3. In an email, please bcc: advocacy@mendedlittlehearts.org so we can record your action taken. If you are sending a fax, please remember to email: advocacy@mendedlittlehearts.org so you get credit for your work!

If you have additional concerns or questions or for more information about the opportunity to visit your legislators in August, please visit our website or email advocacy@mendedlittlehearts.org.

Thank you for continuing to give of your heart and your time to improve the lives for those dealing with congenital heart defects.

Amy Basken

National Advocacy Chairperson

advocacy@mendedlittlehearts.org

SampleLetterSample Letter:

[Subject] Weigh in on HHS Appropriations markups today!

[DATE]

LEGISLATOR NAME

LEGISLATO BUILDING ADDRESS

Washington DC 20510

Dear [Senator/Representative NAME,]

As a constituent in [enter city or state here], and [select one: person with a congenital heart defect, / the parent of a child with a congenital heart defect, / medical professional caring for children with congenital heart defects,] I am writing to urge you to support funding of congenital heart disease surveillance as outlined by the provisions in the recently enacted health reform law by telling the chair of the appropriations committee today!

Congenital heart defects are the most common birth defect. Unfortunately, [I am one of the nearly / My child is one of the nearly / my patients are among the nearly] 1 in 100 children born with a heart defect each year. As a chronic disease often requiring multiple surgeries and life-long specialized care, heart defects can run a high health care cost. Further understanding of this disease through research and surveillance will improve outcomes and reduce the burden on our health care system.

[Insert 2-3 personal sentences (remember – short is better!) You may wish to choose from the following bullets:

  1. When I last visited your office in [insert Washington DC or location of in-district office], you indicated your support for improved research and data collection for congenital heart disease. Thank you.
  2. When I last contacted your office by [phone/email] your response indicated your support for improved research and data collection for congenital heart defects. Thank you.
  3. During this meeting, you/he/she indicated your support for the inclusion of appropriate funding in the 2011 appropriations bill.
  4. During this meeting you/he/she indicated you would get back to be about support for the inclusion of appropriate funding in the 2011 appropriations bill. I encourage you to reconsider.
  5. Improving data collection will help provide better insight into congenital hearts disease across the general population, and across the life span. This will drive research, prevention and treatment strategies ultimately leading to better outcomes, more productive lifestyle and reduced burden on the healthcare system.
  6. This is important to me because:

The timing is critical. The House Appropriations Committe’s Labor, Health and Human Services (HHS) and Educations Subcommittee is scheduled to mark-up the FY-2011 Bill Today! The Senate Subcommittees will follow shortly.

If you have not yet had the opportunity to contact LHHS Appropriations Subcommittee Chairman Obey or Ranking Member Tiahrt/Chairman Harkin or Ranking Member Cochran, I encourage you to request a total of $7.25 million for the Centers for Disease Control and Prevention (CDC) to support data collection to better understand CHD prevalence and to assess the public health impact of CHD, including $3.75 million for a pilot adult surveillance system and $3.5 million to add CHthe public health impact of CHD, including $3.75 million for a pilot adult surveillance system and $3.5 million to add CHD into the existing birth defects surveillance system.

On behalf of [myself/ my child/ my patients,] and the nearly two million American children and adults with CHD alive today, thank you for your attention to this critical issue.

Sincerely,

[Your name]

[Contact Information]

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3 Responses to Congenital Heart Futures Act – Take Action Today!

  1. Crystal Mulvey
    July 15, 2010 at 2:27 pm

    i WOULD LOVE TO KNOW HOW TO GET A BILL PASSED TO MAKE FULL CATHS AVAILABLE TO HEART TRANSPLANT PATIENTS 1X A YEAR INSTEAD OF EVERYTWO YEARS BECAUSE MY SONS HEART REJECTED DUE TO LACK OF THAT TEST

  2. christine altmaier
    August 18, 2010 at 7:10 pm

    my daughter died 17 years ago of tetrolgy of fellot and still i’m still looking for the cause of it looking for research about what causes it would, really like to know after 17 years not knowing if it’s something i did to cause it just want to know why,thank you. sincerley christine altmaier