Twins' medical condition attracts community outpouring of support
Apr. 29—A local couple is struggling to get an expensive gene treatment for their newborn twins who are suffering from a rare and often fatal condition.
Social media posts made by Austin and Amanda Reed have been drawing widespread attention to their desperate situation. The couple's twin sons, Easton and Eli, were born March 31 at a Kansas City hospital. Soon after, both were diagnosed with spinal muscular atrophy, a genetic disease that impacts the central nervous system, causing muscle weakness and wasting.
SMA is the most common genetic cause of death in infants and occurs in about 1 in 10,000 live births, according to the Muscular Dystrophy Association. While there is no known cure, gene therapies can help. However, such treatments are costly.
In their posts, the Reeds say their sons have been denied gene therapy treatment by their insurance, which is offered through Amanda Reed's employer, Mosaic Life Care. She works as an LPN for the health system, which is based in St. Joseph.
According to a memo sent to leaders of the hospital system, Mosaic Health Care Trustees made the decision in January to not cover gene therapy due to its high cost.
The Reeds' posts say they appealed that decision and were denied.
Mosaic spokeswoman Joey Austin said the hospital can't comment specifically on the Reeds' situation due to privacy concerns. She did, however, offer a statement from Mosaic's Chief Executive Officer Mike Poore.
"We, like many in our community, have been furious as we are confronted with the sad reality too many patients know too well: The hope of healing offered by a medical treatment or drug is shattered by skyrocketing pharmaceutical prices. In January, our Mosaic Health Care Trustees made the gut-wrenching decision not to cover expensive gene therapy used to treat ultra-rare diseases.
"To hear of a drug company charging one family nearly $5 million to treat a rare genetic disease is appalling. Global pharmaceutical companies are putting profitability over affordability, making it impossible for employers like our hospital system to bear the financial burden of these exorbitant drug prices. These companies also fail to deliver transparency around the pricing structure.
"Covering experimental gene therapy treatments, with the high cost they carry today, could cripple our health system, directly impacting our more than 4,000 employees and the approximately 270,000 people who rely on the health care we provide in small communities across four states.
"Across the nation, community hospital systems like ours are operating on lean budgets with significant financial challenges. We continue to renew our pledge to serve places that would otherwise be health care deserts, while also working to offer affordable health plans to our employees.
"We will strive to work closely with all parties to relentlessly uncover every stone to get families the help they need when confronted with a coverage denial. We are working to find alternative solutions and financial resources that might ease the burden of the cost of care. Community hospitals and employers should not have to choose between financial viability and supporting their dedicated employees. More importantly, families should not have to focus on the astronomical costs imposed by drug companies, but instead should be able to focus on the care of their children in crisis."
A GoFundMe, which can be found at https://gofund.me/9772eb7f, has been set up by family of the Reeds to help raise funds for treatment for the twins.
News-Press NOW is scheduled to sit down with the Reeds later this week. Stay tuned for updates on this story.
