Eleven Centers Throughout United States First to Earn ACHA Adult Congenital Heart Disease (ACHD) Accreditation
Individuals with congenital heart disease (CHD), the most common birth defect diagnosed in one in 100 births, are living longer. In fact, there are now 1.4 million adults in the U.S., more than children, currently living with one of the many different types of congenital heart defects that range among simple, moderate, and complex. To better serve this population, the Adult Congenital Heart Association (ACHA), the only organization in the country that specifically serves adults with CHD, announced the launch of the ACHA Adult Congenital Heart Disease (ACHD) accreditation program. This accreditation program will provide a community of support and network of experts with knowledge of the disease. To date, 11 centers have earned the ACHA ACHD Accredited Comprehensive Care Center designation.
Contact your Senators this week and ask them to support the Durbin-Blunt amendment to protect the funding for the Department of Defense’s (DoD) medical research programs, including those for CHDs.
Either late tonight or early tomorrow morning, the Senate will vote on a “skinny repeal” bill, legislation that would repeal parts of the Affordable Care Act (ACA) and set up a meeting with the House on ACA repeal legislation. While the contents of this “skinny repeal” have not been released, this bill would fail the Jimmy Kimmel test, since it has the potential to raise premiums and reduce coverage for people with pre-existing conditions like CHDs. No matter your political beliefs, this is not the solution.
Tomorrow, the Senate will likely vote on a “Motion to Proceed,” the first step to open debate on health reform legislation. If the motion passes, the Senate may consider the 2015 Obamacare Reconciliation Repeal Act (ORRA) or the Better Care Reconciliation Act (BCRA), which the Senate has been debating over the last few months. One thing that is clear is that both bills would fail the Jimmy Kimmel test—“No family should be denied medical care, emergency or otherwise, because they can't afford it”—since they would increase out-of-pocket costs and reduce coverage for people with pre-existing conditions like congenital heart defects (CHD).
Subcommittee Markup: Thursday, July 13 at 4:30 PM
Every year, Congress must pass appropriations bills that fund all federal agencies and set the funding levels for all federal programs. We are particularly concerned that there may be significant funding cuts to health programs in the upcoming fiscal year, including those that are important to adults with CHDs. If we don’t advocate for the programs most important to us, no one else will and Congress might take those dollars to fund other programs.
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.
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.
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
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.
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!
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.