Ghoti Ichthus
Genesis 18:32, 2 Chronicles 7:14, Acts 5:29
A Mom was Overjoyed When She Learned a Drug Could Save Her Baby's Life. Then She Learned It Cost $2 Million
By Scott Pelley, Aliza Chasen, Aaron Weisz, Ian Flickinger
December 14, 2025 / 7:50 PM EST / CBS News
"Ciji Green's daughter, Maisie, was diagnosed with spinal muscular atrophy, causing her muscles to waste away. The disease is often fatal before age 2 without treatment. In 2019, a genetic therapy was approved by the Food and Drug Administration to treat SMA, but the single-dose therapy costs $2 million. Green's insurance said it wouldn't pay for the new, expensive drug.
"I became very angry, to know that there was something that could help her. And I knew without a shadow of a doubt I was burying my daughter before she was 2," Green said.
The Zolgensma medication Maisie needed is part of a new breakthrough class of gene therapies often treating rare diseases where patients have few, if any options. But, as the high-cost drugs treat more common diseases, they could have wider impacts on the U.S. health care system.
"I liken it to a coming tsunami, which is basically gonna overwhelm the employer-sponsored insurance system," said economist Jonathan Gruber, who helped develop the Affordable Care Act.
Today, more than 300 high-cost genetic therapies are in clinical trials, and some are aimed to treat diseases suffered by millions. Companies who provide insurance for employees could be called on to cover the new, costly medications, and many employers are not prepared.
"The first problem is that many companies in America are what we call self-insured. They pay their own medical bills. About two-thirds of the insured in America are in such arrangements," Gruber said. "They can't afford to pay this, so they're facing a difficult financial decision, which is, 'Do I cover this drug and potentially go bankrupt? Or do I not help my unlucky employee?'""
More
www.cbsnews.com
By Scott Pelley, Aliza Chasen, Aaron Weisz, Ian Flickinger
December 14, 2025 / 7:50 PM EST / CBS News
"Ciji Green's daughter, Maisie, was diagnosed with spinal muscular atrophy, causing her muscles to waste away. The disease is often fatal before age 2 without treatment. In 2019, a genetic therapy was approved by the Food and Drug Administration to treat SMA, but the single-dose therapy costs $2 million. Green's insurance said it wouldn't pay for the new, expensive drug.
"I became very angry, to know that there was something that could help her. And I knew without a shadow of a doubt I was burying my daughter before she was 2," Green said.
The Zolgensma medication Maisie needed is part of a new breakthrough class of gene therapies often treating rare diseases where patients have few, if any options. But, as the high-cost drugs treat more common diseases, they could have wider impacts on the U.S. health care system.
"I liken it to a coming tsunami, which is basically gonna overwhelm the employer-sponsored insurance system," said economist Jonathan Gruber, who helped develop the Affordable Care Act.
Today, more than 300 high-cost genetic therapies are in clinical trials, and some are aimed to treat diseases suffered by millions. Companies who provide insurance for employees could be called on to cover the new, costly medications, and many employers are not prepared.
"The first problem is that many companies in America are what we call self-insured. They pay their own medical bills. About two-thirds of the insured in America are in such arrangements," Gruber said. "They can't afford to pay this, so they're facing a difficult financial decision, which is, 'Do I cover this drug and potentially go bankrupt? Or do I not help my unlucky employee?'""
More
A mom was overjoyed when she learned a drug could save her baby's life. Then she learned it cost $2 million.
A mom was overjoyed when she learned a gene therapy treatment could save her child's life, until she found out no one would cover the $2 million price tag.
www.cbsnews.com