In the U.S., an estimated 30 million Americans have a rare disease. More than half of those Americans are children. There are estimated to be between 7,000 to 10,000 rare diseases and 95 percent have no specific FDA treatment approved.
Research shows that it too often takes children with rare diseases many years and visits to different doctors to get a correct diagnosis.
Genomic sequencing can, in many cases, help children receive an accurate diagnosis in weeks or days. In the cases in which genomic sequencing does not yield a definitive diagnosis, studies have shown that the results still have great value for ruling out known diseases, thereby removing futile testing and treatments from downstream patient management.
Medicaid is the single largest payer of care in the U.S. for children with rare diseases. Yet most state Medicaid programs do not cover important genomic sequencing, including whole genome sequencing. Too often, there are unnecessary barriers and delays for children with rare diseases enrolled in Medicaid getting access to the genomic sequencing they need.
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