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CELEBRATING SPINA BIFIDA MONTH
______
HON. LUCILLE ROYBAL-ALLARD
of california
in the house of representatives
Tuesday, October 25, 2022
Ms. ROYBAL-ALLARD. Madam Speaker, I rise today to commemorate October as National Spina Bifida Awareness Month, to honor the 166,000 Americans living with this condition, and to draw attention to the critical challenges we must address to ensure that each and every one of these individuals can achieve their full human potential and have the quality of life they deserve.
According to the Spina Bifida Association of America, Spina Bifida is the most common permanently disabling birth defect compatible with life in the U.S. Literally translated as ``split spine,'' it is a condition that occurs when a baby's neural tube fails to develop or close properly. Typically occurring within the first 28 days of pregnancy while the neural tube is forming, Spina Bifida often develops before a woman even knows she is pregnant.
Before 1960, the survival rate for all forms of Spina Bifida was 10 percent to 12 percent. But over the last 6 decades, advances in research and medicine, along with policies supportive of children with disabilities, have ensured that nearly two-thirds of Americans currently living with Spina Bifida have made it to adulthood. And while these strides are certainly worth celebrating, people with Spina Bifida--particularly adults--continue to face a crisis of care that could be largely prevented with the right resources and policies.
Spina Bifida is commonly referred to as the ``snowflake condition'' of birth defects because no two cases are the same. Children born with this condition typically undergo dozens of surgeries before they reach the age of 18. And during their lifetime, someone with Spina Bifida will face at least a
$1 million in medical expenses, including surgeries continuing throughout adulthood, and most can expect to spend much of their lives in a wheelchair or walking with braces.
One significant challenge facing this population is that, while we have a coordinated system of care designed to treat children with Spina Bifida in the U.S., there is no equivalent for adults. Spina Bifida is still largely taught in medical schools as a pediatric condition and education has failed to keep pace with the rapid rise in the adult Spina Bifida population. The result is that adults face a ``care cliff'' and enter a very fractured medical system where they are unable to find physicians willing or even knowledgeable enough to provide treatment. Thousands of adults are left with few options other than to seek care in the emergency room or continue to see their pediatric care team until insurance will no longer cover their care because of their age.
To make matters worse, many of these adults rely on Medicaid as their insurance provider, so even if they have the means to travel to an adult specialist who may be located in another state--as is often the case--their coverage is denied. Across the country, there are more than 100 pediatric clinics devoted to caring for children with Spina Bifida. There are less than 30 whose focus is on adults.
There are a number of concrete steps at the federal level we could take that would make dramatic improvements in the ability of adults with Spina Bifida to access quality care. One is to increase funding of the CDC's National Spina Bifida Program--the sole federal program tasked with improving the care and outcomes for people with Spina Bifida. In 2008, the Spina Bifida Program created a National Spina Bifida Patient Registry to collect the scientific data needed to evaluate existing medical services for Spina Bifida patients, and to provide clinicians, researchers, patients, and families a window into what care models are effective and what treatments are not making a measurable difference. Building on this in 2014, the Spina Bifida Program funded the development of a Spina Bifida Collaborative Care Network to identify and to disseminate best practices for the care of people with Spina Bifida at all ages. However, with only $7.5 million in annual funding, there are only 11,000 patients in the national registry, limiting the ability of medical professionals to glean knowledge that would advance research in areas critical to improving quality of life. Even modest increases to this funding would make an enormous difference.
Another important step would be to reform Medicaid policies to require coverage or treatment received across state lines for rare disorders, as there simply aren't enough specialists in each state to provide the care that people with Spina Bifida desperately need and deserve.
And finally, we must continue to allow patients to receive insurance coverage for telehealth services once the COVID-19 emergency declaration expires. Telehealth is a critical tool in improving health outcomes for everyone, particularly those with unique conditions where care isn't easily accessible geographically.
We are so fortunate today that our country is benefiting from the talent and contributions of the first generation of adults living with Spina Bifida. Today, I honor and celebrate all of them, along with their care partners, and also remember those we have lost to this condition. I urge my colleagues to not only increase funding for the National Spina Bifida Program, but to work together to reform insurance policies so that these Americans receive the care and treatment all of us want for our families and loved ones.
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SOURCE: Congressional Record Vol. 168, No. 168(1), Congressional Record Vol. 168, No. 168(2)
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