News

Contact Your Senators Today: Urge Them to Oppose the Senate Better Care Reconciliation Act!

Friday, Jun 23, 2017

Senate leadership just released the Better Care Reconciliation Act, their legislative alternative to the House-passed American Health Care Act (AHCA), to repeal key provisions of the Affordable Care Act (ACA).  The bill’s release comes without public hearings on the legislation and little time before a planned vote set to occur next week.  We remain concerned that the bill will undermine patient protections and potentially lead to significant losses in coverage.

Read more

Contact Your Senators Today: Urge Them to Preserve the Affordable Care Act’s Patient Protections

Thursday, Jun 15, 2017

Senate Republicans are crafting a legislative alternative to the House-passed American Health Care Act (AHCA) to repeal and the Affordable Care Act (ACA). They have been working on their legislation in secret and do not plan to release their bill to the public until days before a planned vote on June 28. While details about what is included in the Senate bill are scarce, we anticipate that, like the AHCA, it will impact patient protections and potentially lead to significant losses in coverage.

Read more

ACHA Board Member Michael Pernick Discusses the Threat of the American Health Care Act to People With Preexisting Conditions at Washington, D.C. Press Conference

Wednesday, May 24, 2017

Adult Congenital Heart Association Board Member Michael Pernick today joined Senator Dick Durbin (D-IL), Senator Angus King (I-ME) and Senator Brian Schatz (D-HI) to discuss the risks that the American Health Care Act poses to people with pre-existing conditions. You can view the video here, and Michael’s full comments are below.

  • My name is Michael Pernick. I’m from Long Island. I was born with a congenital heart defect called Tetralogy of Fallot—you may have heard of it because it is the same heart defect as Jimmy Kimmel’s son, Billy.

Read more

Urge Your Members of Congress to Sign the Durbin-Grassley Fiscal 2018 CHD Appropriations Letter

Wednesday, May 10, 2017

Senate Sign-On Deadline: May 12, 2017

As Congress begins consideration of federal spending bills for Fiscal Year 2018, ACHA asks that you act today to urge your two Senators to sign the Durbin-Grassley Fiscal 2018 Appropriations Letter in support of funding for the CDC program to address the lifelong needs of Americans with congenital heart defects (CHDs). Members of Congress send letters outlining their funding priorities for the next year, and we want as many people to sign onto the letter as possible! The Durbin-Grassley letter requests robust federal support for CHD-related public health research and surveillance initiatives at the Centers for Disease Control and Prevention’s (CDC) National Center on Birth Defects and Developmental Disabilities (NCBDDD).  Federal support is necessary to continue and expand upon these efforts to improve health outcomes and reduce medical costs!

Read more

Introducing Mark Roeder, New President and CEO

Monday, May 01, 2017

On behalf of our staff and Board of Directors, we are proud to announce the hiring of our new President and CEO, Mark Roeder. He joins ACHA with an impressive 30-year career track record in nonprofit management for large, national health organizations as well as high-level corporate marketing and public relations.

Read more

Every Adult with CHD Was Once a Child with CHD...

Wednesday, Feb 01, 2017

Philadelphia, PA (February 1, 2017) – The Adult Congenital Heart Association (ACHA) announced today the launch of their Heart Month campaign – Every adult with CHD was once a child with CHD - this February is focusing on the importance of raising critical awareness of congenital heart disease (CHD) and lifelong care from childhood to adulthood.

 

Read more

Advocacy Alert: Notice About Legislative Changes

Tuesday, Nov 22, 2016

As the dust settles on last week’s election, many people have been wondering what challenges and opportunities the adult congenital heart disease (ACHD) community will exist with the new Trump administration and new Congress next year. 

Read more

Legislative Action Alert: Contact Your Members of Congress Today

Wednesday, Sep 07, 2016

On Thursday, Sept. 8, 2016, the House Energy & Commerce Committee is holding a hearing on the Congenital Heart Futures Re-authorization Act (CHFRA).  As you know, the Adult Congenital Heart Association (ACHA) has been working hard since this bill’s introduction last fall to support its passage.  This hearing is an important step towards enactment. 

This ACHA-endorsed legislation reauthorizes the Congenital Heart Futures Act, enacted in 2010, that expanded the infrastructure to track congenital heart disease (CHD) at the Centers for Disease Control and Prevention (CDC) and increased research on CHD at the National Institutes of Health (NIH).

Read more

Closing the Care Gap for Patients With Adult Congenital Heart Disease

Wednesday, Jul 20, 2016

The Adult Congenital Heart Association (ACHA) announced today the launch of their ACHA ACHD Accreditation Program. This is a significant milestone as this program establishes a concrete set of criteria that strives to provide high quality care for adult congenital heart disease (ACHD) patients.

Read more

Check out our profile