Getting the attention of government officials is always a challenge, yet is an important component of the process of getting to the cure. We applaud the efforts of some AHC families who have recently engaged with members of the US Congress.
Tish West, mom to AHC Champion Caroline (FL, USA) testified in Washington in support of the ACE Kids Act that has two chief aims:
- The first is to replicate the medical home model at St. Joseph’s Children’s Hospital. Legislation should give hospitals incentives to coordinate clinical and psycho-social resources and not dilute specialist expertise by pushing care to community pediatricians who are not equipped to handle these rare, complex conditions.
- The second is to allow Medicaid to cross state lines
Several other AHC families participated in RDLA’s In District Lobby Days, where they visited their Representatives and Senators in their local offices. They went to bring AHC awareness, to push for the passage of the Senate version of the 21 Century Cures Act, and to push for greater funding for the NIH. Thank you to everyone who participated! If you would like to participate in these sorts of activities in the future, please visit www.rareadvocates.org and sign up to receive the alerts.