February 26, 2020 | Having trouble viewing this email? Click here
Washington DC Update 2/26/2020
Greetings from Washington!

In the Update this week:

  • The “public charge” rule went into effect nationwide on February 24. Resources for families are provided below.
  • Congress is still working on legislation to address surprise medical bills and prescription drug prices.
  • The Kaiser Family Foundation has developed state-specific health care "snapshots" that provide information about a number of topics, including health care costs and coverage.
  • The Supreme Court has not yet decided whether it will take up the ACA case this year.

Rare Disease Day – February 29
HHS and the National Organization for Rare Disorders (NORD) recognize February 29 as Rare Disease Day with the theme, "Rare is many, rare is strong, and rare is proud!" Find information, events, and campaign resources at the Rare Disease Day website. 
 
February is Black History Month .
Visit the Black History Month webpage (HHS Office of Minority Health) to learn more about activities and events, and to download shareable graphics and other related materials.
 
Coronavirus: You can keep up to date on this topic via the CDC's webpage on the novel coronavirus that originated in China -- COVID-19 . See also Coronavirus Misinformation Is Spreading Fast (Axios Vitals, 1/28/20). You can also subscribe to a new COVID-19 newsletter .
 
REMINDER: Please see the “Your Input Sought” section below for details and information about how to submit comments on Out-of-State Provision of Medicaid Services for Children with Medically Complex Conditions (implementation of the ACE Kids Act), due March 23.
 
AND…
In case you hadn’t noticed, IT’S AN ELECTION YEAR! The Voting & Elections webpage on USA.gov , provides information on who’s running (federal, state and local), how to register, when and where you can vote, absentee ballots, and more. If you can’t find what you need there, try VOTE411 (from the League of Women Voters). As always, a lot is at stake. Please register, vote, and spread the word. 
IN THIS ISSUE

  • The Courts
  • The Administration
  • Congress
  • Medicaid/CHIP News, Information, and Resources
  • Medicaid Waivers
  • Affordable Care Act
  • Tricare
  • Other News, Information, and Resources
  • Your Input Sought
  • Of Possible Interest
  • Upcoming Webinars and Calls
  • Information on Social Security Scams

THE COURTS
ACA Case
It was anticipated that the Supreme Court would decide last Friday, February 21, whether to hear this year the consolidated cases (formerly Texas v. U.S.) about the constitutionality of the Affordable Care Act – House of Representatives v. Texas and California v. Texas. However, the Court did not make that decision last week, and it is not clear when it will do so. See Supreme Court Mum on ACA Case (Heatlthcare Dive, 2/24/20).
THE ADMINISTRATION
On February 24, the administration sent to Congress a request to spend $2.5 billion to fight the new coronavirus, COVID-19. Half of that amount would be funding shifted from other programs, half would be new money. Some Members of Congress are questioning whether that is enough. See also Governmental Public Health Leaders Request Emergency Supplemental Funding for COVID-19 Preparedness and Response Efforts (Association State and Territorial Health Officials press release, 2/24/20).
 
Public Charge Rule Went Into Effect February 24; Legal Challenges Still Pending
On January 27, the Supreme Court lifted a nationwide-ban (except in Illinois) on enforcement of the “public charge” rule, pending further appeals. The administration then decided that it would begin to enforce the rule on February 24. On February 21, the Supreme Court ruled that the rule could be applied in Illinois. Therefore, as of Monday, the rule is being applied all over the country, even though it is still being challenged in court.

The “public charge” rule from the Department of Homeland Security (DHS) changes the way that decisions are made about whether to issue a “green card” to an immigrant already residing in the US, or to issue a visa to someone who wants to enter the country, extend their stay, or change their visa type. The determination about whether someone is likely to become a “public charge” (that is, dependent on government services) will be based on a number of factors, including income, health status, and the use of public benefits after February 24, 2020.
 
It is important to remember that the use of benefits, such as Medicaid and CHIP, by a person’s child or other family member DO NOT COUNT in public-charge determinations, and that many types of immigrants are exempt from the rule.

Also, the following benefits are NOT included in making in public charge determinations:
- CHIP
- The use of Medicaid for:
  • people younger than 21
  • pregnant and post-partum women
  • individuals, spouses, and children of those in the U.S. military or Ready Reserve
  • life-threatening emergencies
  • school-based health services

Immigrants should seek legal counsel if they are concerned about how the rule might apply to them.

Public Charge Resources (most of which are useful for families):




CONGRESS
Senate Passes Lifespan Respite Reauthorization Bill
On February 24, the Senate passed the Lifespan Respite Reauthorization Act ( S. 995). The House passed its own version of the bill last July, but now the Senate-revised bill must go back the House for a vote. 
Surprise Medical Billing 
As reported in the February 19 Update, there are now multiple bills in the House and Senate to address the issue of surprise medical billing, which occurs when a patient goes to an out-of-network emergency room or goes to an in-network facility but gets billed by an out-of-network provider working within the facility. For more information, see Update on Federal Surprise Billing Legislation: New Bills Contain Key Differences ( To the Point blog of the Commonwealth Fund, 2/20/20). 
Prescription Drug Prices
Senators Chuck Grassley (R-IA) and Ron Wyden (D-OR), Chairman and Ranking Member, respectively, of the Senate Finance Committee, have developed legislation to address high prescription drug prices. Although the bill was reported out of committee on a bipartisan basis, it will need more Republican support for Senate Majority Leader Mitch McConnell to bring it to the Senate Floor. A FiercePharma article reports: Grassley Predicts Senate Pricing Bill to Pass by May (2/24/20). “He aims to attract more Republican support, negotiate with House speaker Nancy Pelosi, and win the president's endorsement for the bill.” See also Trump’s Support for Bipartisan Senate Drug Pricing Bill May Not Be Enough to Push It into Law; Senate Leaders Have Yet to Embrace The Legislation Despite Widespread Public Angst about Health-Care Costs (Washington Post, 2/18/20). 
MEDICAID/CHIP NEWS, INFORMATION, AND RESOURCES
On November 12, the Centers for Medicare and Medicaid Services (CMS) issued a proposed rule, the Medicaid Fiscal Accountability Rule ( CMS Fact Sheet) that would restrict the ways that states can raise funds to finance their share of Medicaid expenditures. Public comments were due on February 1. The proposed rule could force states to significantly reduce their Medicaid spending. See also Medicaid [Fiscal Accountability] Rule May Have a Huge Impact (Axios Vitals, 2/3/20).

WORTH REPEATING: Revisiting CHIP Buy-In Programs for Children (Health Affairs blog, 2/14/20)
MEDICAID WAIVERS
Indiana Waiver Proposal
On January 31, 2020, Indiana submitted an application requesting a 10-year extension of its Healthy Indiana Plan (HIP) section 1115 demonstration program, along with a 5-year extension of the Substance Use Disorder (SUD)/ Serious Mental Illness (SMI) amendment. The application requests: (1) to incorporate the Workforce Bridge Amendment into this extension; (2) flexibility to modify the monthly premium contributions and copayments without requiring the submission of an amendment; and, (3) update the requirements for SUD/SMI providers that provide inpatient detoxification. An extended public comment period ends on March 21, 2020, at 11:00 pm ET. View/Submit Public Comments.

To track state waiver requests, see:
AFFORDABLE CARE ACT
As reported in the February 5, Washington Update, the Centers for Medicare & Medicaid Services (CMS) issued the proposed annual Notice of Benefit and Payment Parameters (NBPP) Rule for 2021, also known as the Proposed 2021 Payment Notice, on January 31. See CMS press release. The NBPP sets requirements and standards for Affordable Care Act insurance reforms and the health insurance marketplaces. Of note: CMS seeks comment on whether enrollees who automatically re-enroll should have their premium tax credits reduced to $0 unless they return to the marketplace for a new eligibility determination. Public comments are due on March 2, 2020. For more information, see A Mixed Bag for States: The Proposed 2021 Notice of Benefit and Payment Parameters (State Health and Value Strategies, 2/14/20). 
TRICARE
OTHER NEWS, INFORMATION, AND RESOURCES
Health Challenges and Disparities for Children and Youth with Special Health Care Needs
A February 2020 brief from Child Trends— Children with Special Health Care Needs Face Challenges Accessing Information, Support, and Services — examines the most recently available data, from the 2016-2017 National Survey of Children’s Health (NSCH), about children and youth with special health care needs (CYSHCN) and their families. The researchers found that, CYSHCN, as a group, are more likely than their non-CYSHCN peers to face challenges to their well-being, suggesting that CYSHCN and their families are at risk for adverse outcomes in economic, academic, and social-emotional domains, as well as health. Racial and ethnic disparities in access to opportunities and supports exacerbate these inequities. Data also show widely varying outcomes for CYSHCN, depending on the state in which they live.

Family Caregiving
The February 21 issue of the CDC’s Morbidity and Mortality Weekly Report (MMWR) reports on a study, Characteristics and Health Status of Informal Unpaid Caregivers — 44 States, District of Columbia, and Puerto Rico, 2015–2017 (MMWR, 2/21/20). The study found: In 44 states, DC, and Puerto Rico, approximately one in five adults reported that they had provided care for a relative or friend in the last month during 2015–2017; much of the responsibility of caregiving was borne by younger adults (aged <45 years); and the age-adjusted percentage of current caregivers who reported that their health was fair or poor was nearly 20%, with estimates ranging as high as one third in Arkansas and Puerto Rico and >20% in many other states. The report is also described in the article, Who's Caring for Family Caregivers? 1 in 5 Says Health Is Poor (US News, 2/20/20).

Another article, Caregiving Duties Take Toll on Workers (Yahoo Finance, 2/7/20), summarizes the findings of a 2019 study, Wired for Care: The New Face of Caregiving in America (Cambia Health Solutions, 2019). In this report, reasons for caregiving included “regular health and well-being appointments.” Using that definition, 51% of care recipients are younger than 18; 14% are ages 18 to 34; 19% are ages 35 to 64; and 16% are older than 65. Fifty-three percent of those requiring care needed it due to a health condition (chronic or short-term). The report did not identify the overlap between the age and conditions of those who required care.

Health Literacy and Communications

From the CDC:
Are Your Materials Accurate, Accessible, and Actionable?
All health information should be Accurate, Accessible, and Actionable. The resources on the CDC webpage, “ Develop & Test Materials,” part of the agency’s Health Literacy website, can help in developing health information for specific audiences. Also, check the CDC’s Clear Communication Index, a research-based tool that helps with developing and assessing communication materials for an intended audience.

From the National Public Health Information Coalition (NPHIC):
The NPHIC Outbreak Communications Guide was developed as part of a cooperative agreement with CDC’s National Center for Immunization and Respiratory Diseases. The guide suggests steps to take before, during, and after an outbreak.

Organizational Development
The  HCBS Business Acumen Center has released the fourth module of the  HCBS Business Acumen Center Toolkit: “Disability Network Business Strategies: A Roadmap to Financial and Programmatic Sustainability for Community-Based Organizations.” This resource is a ‘how-to’ guide designed to help community-based organizations (CBOs) evaluate, plan, develop, implement, and monitor strategies to help build and sustain their organizations in various business climates.

Other Information
 
State Health Care Snapshots . The Kaiser Family Foundation’s state-specific health care "snapshots" provide data across a variety of health topics for each state, including health care costs, coverage (Medicaid, Medicare, private insurance), the uninsured, health status, and access to care. They also describe each state's political environment in this election year.
 

WORTH REPEATING:
 
The Census – the Count All Kids Initiative
In order to ensure that cities, counties, and states receive the federal aid to which they might be entitled, it is important to have an accurate count of their populations. The 2010 census missed more than 10% of all children under age five in the U.S. The Count All Kids initiative, sponsored by The Partnership for America’s Children, First Focus on Children, Zero to Three, and The Coalition on Human Needs, provides resources for community members so that they can help ensure an accurate count in the 2020 census. To see how hospitals and medical providers are helping in Washington, DC, see Count Your Cuties: How Hospitals and Medical Providers Are Helping Count Kids for the 2020 Census.
 
FDA Patient Affairs and Patient Representatives Program ®
The Food & Drug Administration has a Patient Representative Program ®, which offers patients and caregivers the opportunity to provide advice to the agency as it regulates drugs, biologics, and devices. The FDA also has a Patients Matter Video Series. The most recent video, What is Expanded Access? explains how to use the Expanded Access Program (also known as “compassionate use”) and features a family’s experience with it. Other videos in the series include Patients Matter: Giving Patients a Seat at the Table, and Patients Matter: How Rare Disease Patients Can Move Scientific Discovery Forward. You can contact the FDA Patient Affairs Staff at Tel: 301-796-8460 or [email protected] or follow them on Twitter @FDAPatientInfo.
YOUR INPUT SOUGHT
Please pay special attention to the items marked with ***

Proposed Payment Notice and Letter to Issuers – Due March 2
As reported in the February 5 Update, on January 31, the Centers for Medicare & Medicaid Services (CMS) issued the proposed annual Notice of Benefit and Payment Parameters (NBPP) Rule for 2021, also known as the Proposed 2021 Payment Notice. See CMS press release. The NBPP sets requirements and standards for Affordable Care Act insurance reforms and the health insurance marketplaces. Among other things, CMS seeks comment on whether enrollees who automatically re-enroll should have their premium tax credits reduced to $0 unless they return to the marketplace for a new eligibility determination. (See page 2 of this Fact Sheet .) Public comments are due on March 2, 2020, and can be submitted on this page of Regulations.gov .
 
The U.S. Department of Transportation (DOT) seeks public comments on a new  proposed rule to improve restroom access for passengers with disabilities on single-aisle aircraft with 125 or more seats. The rule is based on  negotiated rulemaking undertaken by DOT's Advisory Committee on Accessible Air Transportation, which included aviation industry representatives, disability rights advocates, and other stakeholders. The proposed regulation addresses lavatory interiors, on-board wheelchairs, and training of flight attendants. Comments are due by March 2, 2020, and can be submitted here . 
 
The National Library of Medicine (NLM) is asking for public comment in its current effort to modernize ClinicalTrials.gov, the world’s largest public clinical research registry and results database. The focus of the modernization includes improving website functionality, submission processes, and use of data standards. For more information on the project in submitting a comment, click here. Send submissions to NLM by no later than Saturday, March 14, 2020, to Patient Affairs Staff (PAS), Office of the Commissioner, U.S. Food and Drug Administration, or fill out this form. (Tel: 301-796-8460.)
 
*** Request for Information on Out-of-State Provision of Medicaid Services for Children with Medically Complex Conditions – due March 23***
On January 21, the Centers for Medicare and Medicaid Services (CMS) published a Request for Information on “Coordinating Care from Out-of-State Providers for Children with Medically-Complex Conditions.” CMS is seeking public comments on:

Best practices for using out-of-state providers in coordinating care for children with medically complex conditions;
  • How care is coordinated for such children when that care is provided by out-of-state providers including when care is provided in emergency and non-emergency situations; and
  • Processes for screening and enrolling out-of-state providers, including efforts to streamline these processes or reduce the burden of these processes on such providers and states.
Comments are due on March 23, no later than 11:59 pm EST, and can be submitted HERE.
  
Traveling by Air with Service Animals – due April 6
On January 22, the Department of Transportation issued a proposed rule on traveling by air with service animals. As explained in the department’s press release, and this news article, the proposed rule would, among other things: define a service animal as a dog that is individually trained to do work or perform tasks for the benefit of a person with a disability; no longer consider an emotional support animal to be a service animal; consider a psychiatric service animal to be a service animal and require the same training and treatment of psychiatric service animals as other service animals. Comments are due on April 6 and can be submitted here .
 
CMS has issued a Request for Information (RFI) to seek public comments about ways to improve healthcare access, quality, and outcomes for women and infants in rural communities before, during, and after pregnancy, as well as information regarding the readiness of providers, including emergency medical services (EMS), to handle obstetric emergencies (i.e., emergencies related to pregnancy, birth, and after birth) in rural areas. Comments are due by 11:59 pm EST on April 12, 2020, and can be submitted by sending an email to [email protected].

Submit Stories about How Medicaid Has Helped You to “That’s Medicaid”
Through its “ That’s Medicaid” initiative, the Robert Wood Johnson Foundation is publicizing stories about how Medicaid has helped people in various situations. These stories might be helpful as you educate policymakers and the public about Medicaid. People can submit their own Medicaid stories here (scroll down). 
OF POSSIBLE INTEREST
UPCOMING WEBINARS AND CALLS
Thursday, February 27, 1:00-2:00 pm ET
TRICARE/Military OneSource
 
Thursday, February 27, 2:00-3:00 pm ET
SAMHSA ’s Bringing Recovery Supports to Scale Technical Assistance Center Strategy ( BRSS TACS )

Thursday, February 27, 3:00-4:30 pm ET
Substance Abuse and Mental Health Services Administration (SAMHSA) TA Network
 
Friday, February 28, 1:00-2:00 pm ET
USC Annenberg Center for Health Journalism
Note: This webinar is intended for health journalists but might be of interest to others.

Thursday, March 5, 1:00-2:00 pm ET
SAMHSA TA Network
 
Wednesday, March 11, 3:00-4:00 pm ET
ADvancing States

Tuesday, March 24, 2:00-3:00 pm ET
Justice in Aging

Tuesday, April 14, 1:00-2:00 pm ET
Public Health Foundation

Monday, June 1, 1:00-3:30 pm ET [last in a series]
National Quality Forum/Administration for Community Living; Centers for Medicare and Medicaid Services
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Family Voices  is a national organization and grassroots network of families and friends of children and youth with special health care needs and disabilities that promotes partnership with families--including those of cultural, linguistic and geographic diversity--in order to improve healthcare services and policies for children.