Butler Co. parents pushing to get treatment for 3-month-old: ‘You have to fight for your child’

Gene replacement therapy insurance debate

CINCINNATI, Ohio (FOX19) - The parents of Butler County 3-month-old are in the fight of their lives, pushing to get treatment for their little boy.

Sarah and Logan Stanger welcomed little Duke into the world in May.

Duke is suffering from Spinal Muscular Atrophy, better known as SMA. The genetic disorder means the 3-month-old is missing a gene.

“That is the gene that produces the protein that’s going to protect the neurons. Those neurons shoot off in your brain and tell your muscles what to do. When there’s no protein their those neurons die and then those muscles will never work again,” said Sarah Stanger, Duke’s mother.

The more time that passes means that more neurons have died.

The treatment which doctors recommended for Duke is called Zolgensma and it costs $2.1 million. There is another option but long-term the Stangers say Zolgensma is the most cost-effective and least demanding option.

They’re trying to get the Butler Health Plan on board, because right now it’s not covered.

The alternative to Zolgensma is Spinraza. The Stangers say that costs $730,000 in the first year and is an invasive treatment that must be repeated every four months for the rest of the Duke’s life.

With Zolgensma denied by insurance, the family has been on the phone daily trying to speed up the appeals process that they’ve been told could take 30 days.

“So we cannot take 30 days, we cannot take ‘We’re extending the process,’” said Logan Stanger, Duke’s father. “That is not an acceptable answer for us.”

The Stangers say that currently Medicaid is covering the treatment. They are frustrated that an employer’s insurance plan doesn’t at least match what Medicaid is covering.

In a news release, Butler Health Plan Chair Beth Weber said they recognize the advances in medicine but adds, “We also must recognize that these therapies are costly and the current health benefit market has not yet determined how it will adapt to make them available to participants of health benefit plans without jeopardizing the opportunity to provide affordable benefits to the entire population each plan serves."

The full release can be read below:

The Butler Health Plan is a non-profit consortium, consisting mostly of public school districts in Southwest Ohio. We strive to provide a broad array of health benefits for all participants in our plan. We are committed to the privacy of the health information of our participants and the laws which protect that information. As such, we cannot comment with respect to health care benefits that may or may not be provided to any particular participant.

To date, gene therapy, or health care services that introduce genetic material into a person intended to replace or correct faulty or missing genetic material, has been excluded from the benefits provided under our health benefit plans. Gene therapy is at the cutting edge of science, and we recognize that this innovative branch of medicine may open new opportunities that will cure or ease debilitating diseases. We also must recognize that these therapies are costly and the current health benefit market has not yet determined how it will adapt to make them available to participants of health benefit plans without jeopardizing the opportunity to provide affordable benefits to the entire population each plan serves. This is not a consideration that is unique to the Butler Health Plan.

We support medical innovation, and are mindful of the extraordinary cost that is associated with discovery. We will remain committed to providing health care benefits to the participants of our plans and will continue to devote considerable time and resources to determining how to offer innovative treatments as part of our health plans while also assuring current benefits will remain available to all of the participants in our plans.

Beth Weber,

Chair, Butler Health Plan

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