Missouri Family Battles Insurance Over Newborn Twins’ Life-Saving Treatment
A Missouri couple is embroiled in a desperate struggle to secure life-saving treatment for their newborn twins after their family’s insurance provider refused coverage for a crucial therapy. The twins were diagnosed with a rare genetic disease called “spinal muscular atrophy” shortly after birth, a devastating blow detailed in a heartfelt Facebook post by the family.
According to Amanda Reed, the mother of the twins, the prognosis is dire without intervention, with a life expectancy of merely one to two years. The disease progressively wastes away muscles, impacting essential functions such as breathing and swallowing, painting a grim picture for the infants’ future.
Adding to the family’s anguish is a recent alteration to their insurance coverage provided by Mosaic Life Care, where Reed works. The therapy urgently needed for each child, a one-time gene treatment known as Zolgensma, is no longer covered under their insurance plan, a decision that came into effect just a day after the twins were born.
Zolgensma, heralded as the world’s most expensive drug, carries a staggering price tag ranging from $1 million to $2.5 million per child, placing an overwhelming financial burden on the family. In a bid to rally support, a GoFundMe campaign has been launched to assist with the monumental cost of treatment.
Reed emphasizes that infants who receive the gene therapy before symptoms manifest often lead normal lives, underscoring the urgency of their situation. With time ticking away, the family finds themselves in a race against the clock to secure the necessary medical intervention for their sons.
Mosaic Life Care CEO, Mike Poore, pointed fingers at pharmaceutical companies, condemning their pricing practices for placing untenable strains on healthcare systems and employers. He revealed that Mosaic’s Health Care Trustees made the difficult decision to cease coverage for expensive gene therapies in January, citing concerns over the financial sustainability of the health system.
Despite the grim circumstances, Poore reassured that efforts are underway to explore alternative financial avenues to aid the twins’ case, acknowledging the profound impact of their plight.
