Other News, Information, and Resources (Washington Update, February 14, 2019)

Federal Poverty Guidelines
The Federal Register Notice for the 2019 Poverty Guidelines was published February 1, 2019, although guidelines were effective as of January 11, 2019. For the 48 contiguous states and the District of Columbia, the guidelines are below:
Persons in family/household   Poverty guideline
1 …………………………………… $12,490
2 …………………………………….. 16,910
3 …………………………………….. 21,330
4 …………………………………….. 25,750
5 …………………………………….. 30,170
6 …………………………………….. 34,590
7 …………………………………….. 39,010
8 …………………………………….. 43,430

On February 11, the Centers for Medicare & Medicaid Services (CMS) released an informational bulletin  setting forth the income eligibility levels for certain Medicare/Medicaid beneficiaries and Qualified Disabled Working Individuals (also on the Medicaid.gov website).

Electronic Health Information
On Monday, February 11, 2019, the Centers for Medicare & Medicaid Services (CMS) released a proposed rule intended to facilitate the use of electronic health information and promote patient access to and control over their health information. See the CMS Fact Sheet.

Rare Disease Day – Focus on Sickle Cell Disease
Rare Disease Day occurs on Thursday, February 28. According to the Centers for Disease Control and Prevention (CDC), sickle cell disease affects approximately 100,000 individuals in the United States. Join the HHS Office of Minority Health (OMH) in amplifying sickle cell disease on Rare Disease Day by visiting the sickle cell disease website for resources, activities, and more information regarding the disease. You can also watch and share OMH’s Sickle Cell Stories videos. There will also be a webinar: Holistic Health and Sickle Cell Disease: A Focus on Mental and Behavioral Health, Thursday, Feb. 28, 1:00-2:15 pm ET.

WORTH REPEATING: Patient Engagement at the FDA
From the Patient Affairs Staff (PAS), Food and Drug Administration, U.S. Department of Health and Human Services (1/30/19):
FDA’s Patient Affairs Staff will continue working with patients, caregivers, and advocates in 2019. FDA believes patients are experts when it comes to their health conditions. Understanding the patient experience and incorporating patient feedback into the work is an agency-wide priority. Last year, Patient Affairs launched several initiatives to help better support and connect with patients, including:

• released the first video from the Patients Matter video series
• kicked off the FDA/NORD Rare Disease Listening Session pilot by hearing from patients and caregivers who shared their experiences living with hemophilia
• hosted the inaugural meeting of Patient Engagement Collaborative (PEC) in collaboration with the Clinical Trials Transformation Initiative (CTTI)

Want to learn more about Patient Affairs and ways you can get involved? Check out the recent FDA Voices post, or connect with us on Twitter @FDAPatientInfo.

From the Agencies:

Substance Abuse and Mental Health Services Administration (SAMHSA):
Crisis Bed Registries to Assist People with Urgent Mental Health Needs. SAMHSA and the National Association of State Mental Health Program Directors are working to create a registry of crisis intervention beds for people with serious mental illness (SMI) in need. Twenty-three states are participating in this new initiative, funded by SAMHSA, to establish and/or expand comprehensive, psychiatric crisis bed registry programs.

WORTH REPEATING: Updated CDC Milestone Tracker for Ages 0-5 Available in English, Spanish
The Centers for Disease Control and Prevention’s Milestone Tracker – a free app for easily tracking a child’s early development – has been updated, and now is available in English and Spanish. The app adds to the suite of free, family-friendly materials from Learn the Signs. Act Early. Download the app in English or Spanish.

From Partner Organizations:

New Omnibus Opioid Law Contains Medicaid Fix for Justice-Involved Children and Youth (National Health Law Program, 1/30/19)

 WORTH REPEATING: Engaging Families in Advisory Roles – 5 Top Tips
From the Lucile Packard Foundation for Children’s Health

WORTH REPEATING: A New Approach to Accessing Family Engagement in Health Care Systems
A recent issue brief from Family Voices, A Framework for Assessing Family Engagement in Systems Change was discussed during a January 23 webinar sponsored by the Lucile Packard Foundation for Children’s Health. The webinar slides and materials are now available.