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Policy Agenda

Current Policy Objectives (updated 8/5/11)

  • Sustained funding for the Centers for Disease Control and Prevention (CDC) and National Institutes of Health (NIH) as specified in the Congenital Heart Futures Act
  • Promotion of a Congressional Congenital Heart Caucus
  • Monitor and communicate to our members opportunities and changes relating to the Affordable Care Act
  • Expansion of CDC CHD education efforts
  • Increase in awareness of CHD needs at the Food and Drug Administration (FDA)

Update: 7/14/11
Thanks in part to the many ACHA members who shared their stories of disability struggles, the Social Security Administration announced that it has added seven congenital heart diagnoses to its Compassionate Allowance listings. For more information, read ACHA's news story and blog post.

Update: 4/15/11
ACHA was pleased to provide public witness testimony to the House LHHS Subcommittee regarding our Fiscal Year 2012 budget requests for consideration as they begin work on appropriations for next year's budget. Complete text can be found here.

Congenital Heart Futures Act

We are pleased that the “Patient Protection and Affordable Care Act,” enacted in March, 2010, includes provisions of the Congenital Heart Futures Act calling for:

  • Increased Research: The Congenital Heart Futures Act urges the National Heart, Lung and Blood Institute to conduct or support research on diagnosis, treatment, prevention and long‐term outcomes in congenital heart disease which addresses the needs of infants, children, teens, adults and the elderly living with congenital heart disorders.
  • Increased Surveillance: The Congenital Heart Futures Act asks the CDC to create the National Congenital Heart Surveillance System, which will provide nationally‐representative, population‐based epidemiological and longitudinal data on infants, children, and adults with congenital heart disease in order to better understand CHD incidence, prevalence, and disease burden and assess the public health impact of CHD.

For complete text of the Congenital Heart Futures Act click here.

Once a bill becomes law, it is only the beginning. Now that the bill is passed, every year we will need to lobby for funding in the budget. Many bills are passed which never get funding, or get inadequate funding. If the CHF Act activities are successful, they will likely need more investment over time. Given the many competing priorities for federal dollars, we will need to continue to speak up loudly about why CHD research and surveillance should be a top national priority.

History

ACHA has long believed that there should be a national initiative addressing the life-long needs of people living with congenital heart defects. After several years of successfully advocating for the inclusion of report language, ACHA was positioned to assist in drafting the first disease specific legislation.

The original draft of the CHF Act was written by a team led by the legislative law firm of Patton Boggs. This team included representatives from the ACHA, National Congenital Heart Coalition, and ACC. When Senator Durbin became the CHF Act champion, his team made their own improvements to our draft. Senator Durbin is considered the official author of the Congenital Heart Futures Act.

The CHF Act was introduced as a bill in the House and Senate in March of 2009 as a direct result of the last National Congenital Heart Lobby Day. It was endorsed by 7 senators and 35 House members and had bipartisan support. In December of 2009, Senator Durbin made further modifications to the CHF act, and ensured its inclusion in the Senate health reform bill making its way through Congress. The CHF Act was passed as part of the health care reform package.

The CHF Act has undergone a few changes since its inception. In order to reduce the length, Senator Durbin removed the provision calling for increased education and outreach funding. ACHA plans to work directly with the CDC to ensure that education and outreach accompany these new efforts outlined in the CHF Act. Also of note is that language evolution from “National Congenital Heart Registry” to “National Congenital Heart Surveillance System.” The latter is a more accurate way to describe the kind of population-based health activity we want the CDC to do.