News

Health Insurance Coverage Update

Friday, Oct 13, 2017

Yesterday, President Trump signed an executive order that will affect health insurance coverage for Americans. He seeks to increase competition by facilitating access to association health plans (small businesses can join together to purchase insurance coverage through associations), short-term limited duration insurance products (plans that last less than a year), and health reimbursement arrangements (employers can give employees money to purchase insurance rather than provide it directly). Nothing is changing immediately; rather, President Trump has directed several government agencies to draft regulations to implement these new policies over the next 60 to 120 days.

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Urge Your Senators to Protect Our Access!

Wednesday, Sep 20, 2017

Next week the Senate is expected to take up the ACA repeal plan introduced by Senators Graham (R-SC), Cassidy (R-LA), Heller (R-NV) and Johnson (R-WI).  The plan (being referred to as Graham-Cassidy-Heller-Johnson or Graham-Cassidy) is just as harmful to patient protections as previous legislation considered in Congress this year. Graham-Cassidy would make significant changes to the individual insurance markets and the funding formula for Medicaid.  

We need all CHD advocates to contact their members one more time before the Senate votes on the proposal next week.  While some provisions of Graham-Cassidy differ from the other ACA repeal proposals, this bill, like those that preceded it, invalidates the patient protections important to adults with CHDs. 

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ACHA Launches National Accreditation Program

Thursday, Sep 14, 2017

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.

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Important Legislative Alert: Durbin-Blunt Amendment

Thursday, Jul 27, 2017

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.

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Take Action: “Skinny Repeal” Bill

Thursday, Jul 27, 2017

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.

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Contact Your Senators about Health Reform

Monday, Jul 24, 2017

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).

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Fiscal Year 2018 Labor, Health and Human Services, and Education Appropriations Alert

Tuesday, Jul 11, 2017

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.

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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.

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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.

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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.

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