Since 1996, Cure SMA has coordinated efforts to give the SMA community a specific time of year to think about the latest advancements and to balance what still needs to be done.
This year, the topic of newborn screening gained momentum after an advisory committee under the U.S. Department of Health and Human Services agreed in May to review SMA for inclusion in the Recommended Uniform Screening Panel (RUSP). This brought SMA one step closer to being on a list of diseases that the U.S. government recommends newborns be screened for, which could lead to earlier diagnoses.
Aiming for newborn screening
Cure SMA and the SMA Newborn Screening Coalition made the screening-list submission to the federal government. This was a collaborative process, as Cure SMA’s newborn-screening working group put the submission together along with a panel of SMA researchers, clinical experts and representatives from the Muscular Dystrophy Association (MDA).
Even though newborn screening is generally decided at the state level, a federal recommendation would send a strong message to states about the importance of screening for SMA.
As the topic gains attention, some organizations have taken stronger or more neutral positions on the matter. The American College of Medical Genetics (ACMG) recommends that all couples planning a pregnancy should first be offered SMA carrier testing to give families adequate time to make informed reproductive decisions.
The American College of Obstetrics & Gynecology (ACOG), however, hasn’t made a formal recommendation yet regarding SMA screening. These discrepancies lead to inconsistent positions and practices among physicians, leaving the onus of prevention on patients.
This is why Cure SMA and other organizations are using August to raise awareness about early screening, especially in their call for “SMA Champions” who may want to help in advocate at the state level to make sure newborn screening is implemented in all 50 states.
Specifically, Cure SMA is calling for all possible advocacy efforts to support a successful RUSP application and guarantee that all fronts are covered.
If you wish to become an advocate yourself this month, Cure SMA has prepared some tool kits and handouts for you, as well as state fact sheets to help you present your cause to your state representatives.
Reach out to elected officials
The goal is to get all the members of the SMA community, including patients, families, and medical professionals, to reach out to Congress and state elected officials so they can advocate for newborn screening with other agencies.
Members of Congress deal often with agencies like the U.S. Food and Drug Administration (FDA), the National Institutes of Health (NIH), the Health Resources and Services Administration (HRSA), the Centers for Disease Control and Prevention (CDC), and the Centers for Medicare and Medicaid Services (CMS).
The goal is to eventually implement a national program to screen every newborn for SMA to ensure that babies are diagnosed as soon as possible so treatment can begin early and adverse impacts are minimized, especially while no cure is available.
Early diagnosis also improves the effectiveness of certain therapies approved for SMA, such as Spinraza (nusinersen), which works best when given early in the development of the disease.
Children born with SMA have a compromised quality of life from an early age. Feeding tubes, multiple surgeries, personal relationship challenges and others are common everyday topics for families of children with SMA. The lifetime cost of caring for a child with SMA today can range from $260,000 to $3 million.
No limit to ways you can help
Become an “information point” for SMA by staying on top of the latest advancements of the newborn screening national program and other developments and by sharing the latest news in your social media channels using the hashtag #cureSMA.
You can participate on weekly Wednesday morning “sharing videos,” where members of the community share their experiences and perspectives; you can join the Twibbon campaign by changing your profile picture on Facebook to include the SMA Awareness Month banner.
Or you can send your pictures to Cure SMA’s joint SMA Community Facebook Album (send a photo that shows “what SMA awareness means to you” to [email protected] with “SMA Community Album” as the subject line).
For anyone with an interest in SMA, this month is the time to get involved. Tell people about the cause, raise the topic at a family gathering or while visiting with old friends.
Hand out fliers in your neighborhood, organize a candlelight vigil, reach out to your local and state representatives and ask them to participate in activities recognizing August as SMA Awareness Month. Or attend one of the several major league baseball awareness games — the options are unlimited.
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