On Dec. 16, CHA submitted comments to the request for information from Reps. DeGette and Upton on a Cures 2.0 package. Their goal is to build upon the 21st Century Cures bill signed into law in 2016. To inform this new package, they asked for feedback on four particular areas: digital health, coverage of new cures, the utilization of data to empower patients, and caregiver literacy/education. Our comments included the following suggestions for each section:
- implement the proposed pediatric electronic health record (EHR) certification program with some additional refinements to best meet the needs of pediatric providers and their child patients, and to improve pediatric quality and patient safety
- address the safety, security and confidentiality considerations that are unique to pediatrics, including the care of adolescents and children in unique family situations
COVERAGE OF NEW CURES
- improve coordination between payers, manufacturers, patients, specialty pharmacies and the Food and Drug Administration (FDA) to ensure timely patient access
- consider ways to use technology to improve prior authorization processes
- examine ways to measure patient access to new curative drugs and therapies
- recognize delivery barriers that can sometimes come with these drugs
UTILIZATION OF DATA TO EMPOWER PATIENTS
- take into account potential HIPPA violations that could occur when converting data into a patient-friendly format
- consider policies that promote efforts to connect information throughout the U.S., and not simply on a state-to-state basis
CAREGIVER LITERACY, EDUCATION AND TRAINING
- consider children’s hospitals an ally in the field of caregiver training and education
We thank members who provided responses to our questions and feedback to our draft comment letter. Your help was essential in the development of our comments.
Additionally, CHA signed onto a letter with the Child and Adolescent Mental Health Group urging Reps. DeGette and Upton to consider efforts that address mental health services for children within a Cures 2.0 package. Within the letter, the group offers a set of specific and actionable opportunities that strengthen the health care workforce, insurance coverage and payment, integration of mental/behavioral health into pediatric primary care, early identification and intervention, and mental health parity.