Directions Spring 2020

Cure SMA Advocates for SMA Community During COVID-19 Outbreak

WA

ME

VT

MT

ND

OR

MN

NH

ID

NY

WI

SD

MA

MI

WY

CT RI

IA

PA

NJ DE MD

NE

NV

From the start of the COVID-19 public health emergency, Cure SMA was actively educating policymakers at the federal and state level about the needs, concerns, and impacts of the COVID-19 outbreak on the SMA community. Our advocacy efforts, which have been informed by direct conversations and survey responses from the SMA community, have included: • Cure SMA letters to Congress, Governors, and key state health care officials on the unique care, treatment, equipment, and other needs of children and adults with SMA and their families; • Letter downloads for the SMA community to use to send directly to their state officials on their specific COVID-19 related needs; and • Grassroots action alert to Congress to ensure safe and ongoing access to community services, including in-home care and personal care attendants. In addition, Cure SMA has joined other national healthcare, rare disease, and disability organizations in letters urging federal and state officials to stop the discrimination of individuals with underlying health conditions, such as SMA, in accessing healthcare and equipment (e.g., ventilators) during the public health emergency. Separately, Cure SMA wrote to all 50 state Governors demanding that they rescind any discriminatory rationing of care policies. This collective effort has resulted in policy reversals and gubernatorial statements supportive of equal access to care and equipment during this crisis.

OH

IN

UT

IL

WV

CO

VA

CA

MO

KS

KY

NC

TN

OK

AZ

AR

SC

NM

GA

AL

MS

TX

LA

FL

AK

23

14

Adopted and implemented Adopted and not implemented

23

HI

3

14

3

Pilots

Newborn Screening of SMA Reaches Screening Milestone

While more than half of states screen for SMA, just under 50% of all newborns in the U.S. are being screening for SMA, based on the birth estimates of the 26 screening states. However, the percentage of newborns screened for SMA is expected to increase to more than 70% by the end of 2020, based on Cure SMA projections, as several large states—including California and Illinois—implement permanent programs during Summer and Fall 2020. Cure SMA now focuses its advocacy and support on non-screening states to accelerate its goal of universal screening by July 2023, which would mark the 5-year anniversary of when the U.S. Health and Human Services Secretary approved the Advisory Committee on Heritable Disorders in Newborns and Children recommendation to add SMA to the Recommended Uniform Screening Panel (RUSP). Early diagnosis of SMA through newborn screening is critically important now that we have multiple effective SMA treatments. “This early success reflects the great advocacy collaboration among Cure SMA supporters, families, healthcare providers, and industry partners. Our work and partnership will continue until all babies born in this country are screened for SMA,” said Kenneth Hobby, President of Cure SMA. More than half of all U.S. states now screen newborns for SMA, less than 2 years following the federal recommendation that states screen newborns for SMA. As of May 30, 26 states are screening newborns for SMA—23 through permanent SMA screening programs and 3 through pilot programs.

GOT A NEWBORN SCREENING TIP OR UPDATE? Want advocacy help to support your local efforts related to COVID-19 or other issues? Contact the Cure SMA Advocacy Team at (202) 871-8004 or at advocacy@curesma.org.

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DIRECTIONS | SPRING 2020

UPDATES