CHATTANOOGA, Tenn. (CN) – Rosalie Howes began to choke up when she began to describe the effect Tennessee’s proposal to receive Medicaid funding as a block grant would mean for her family.
Her son, Hyrum, 8, suffered a stroke at birth and now has cerebral palsy and seizures. He sat in a wheelchair beside her as the 30-year-old spoke at a public hearing regarding the draft of Tennessee’s request to ask the Centers for Medicare and Medicaid Services to give part of the state’s $7.9 billion Medicaid funding as a block grant.
“I had to hold my baby's shaking blue body multiple times a day, every day for the first three years of his life while doctors and specialists tried different combinations of medication and therapies and procedures to get his rare seizure disorder under control,” Howes, a resident of Lebanon, said.
That was when the drug Hyrum takes came out. It has only recently become affordable. But for Hyrum, if he had to wait, it would have been too late.
Lawmakers told Hyrum’s mother that services under Tennessee’s proposal to amend TennCare would not be cut, that Hyrum could continue to receive the medications he takes to control his seizures.
But Howes read the proposal and she understands Tennessee is planning on asking the CMS to give it the flexibility to exclude newer, more expensive medications from TennCare until their prices drop. It would be devastating for families like hers, as many children with neurological disorders take several different kinds of medications.
“What qualifies legislators to determine what is medically necessary? … What gives them the right to put a budget on someone's life?” Howes finished to a standing ovation.
Last month, Tennessee unveiled its proposal for a block grant – the first proposal of its kind. Although it is the first state to propose receiving Medicaid funds through a block grant, the policy idea has been one floated out by conservative lawmakers and think tanks over the years.
If Tennessee’s proposal is approved, it would receive a portion of the federal government’s Medicaid funding as a block grant but would not apply, according to the state, elements of the program like prescription drugs. The state said a block grant would give it flexibility to tackle health care problems in the state.
However, remarks by the public were overwhelmingly negative at comment sessions in Nashville and Knoxville.
On Wednesday afternoon, more than 100 people filled a small auditorium at the Chattanooga Public Library. Some said the proposal threatened the mental health services they required, and others pointed to the opioid epidemic and the trend of rural hospital closures.
When one speaker asked for a show of hands from people who relied on TennCare, a few hands went up.
Only one member of the public, Marty Lotito, founder of Ignite Health Foundation, supported the proposal out of the speakers in Chattanooga.
“Perhaps if we lean on those local faith communities for serving and caring, a lot of these problems could be solved,” Lotito said.
On Oct. 2, TennCare announced the results of a study saying the number of uninsured Tennesseeans increased from 6.7% in 2018 to 6.9% in 2019. Driving that change was an increase in uninsured children.
The state has elected not to expand Medicaid.
Other speakers voiced suspicion of Tennessee, such as retired physician and columnist for the Times Free Press Clifton Cleaveland, who questioned entrusting Tennessee with federal funds while it decided not to address the uninsured in the state. Tennessee’s proposal, he said, asks the federal government to remove accountability for how it manages Medicaid funds.
"Without federal oversight, eligibility for TennCare as well as the content of therapeutic services would become a political and economic football,” Cleaveland said.
A hearing was not originally scheduled in Chattanooga when the draft proposal was first released. But many speakers thanked state representative Yusuf Hakeem, a Democrat who went around the room before the meeting greeting attendees, for lobbying for a hearing in the Scenic City.
Tennessee Gov. Bill Lee said Oct. 3 the many people criticizing Tennessee’s draft proposal “have been either misinformed or have not taken the time to really understand it” – a statement criticized by many speakers.
A spokeswoman for the governor did not immediately return a request for comment Wednesday.
The Beacon Center, a Tennessee-based free-market think tank that has advocated for block grants for Medicaid in the past, said it is still evaluating Tennessee’s draft proposal for its long-term sustainability and cost.
"We are evaluating the proposal and watching the public comment hearings” Executive Vice President Stephanie Whitt said in a statement when asked for a comment. “We are waiting to see what the final proposal is going to look like that the Governor will submit to CMS."
Tennessee created the proposal because of a directive passed by its Legislature earlier this year.
The proposal comes months after the Sixth Circuit ruled the Tennessee General Assembly could not sue the federal government in an effort to prevent Medicaid funds from going to refugees.
Sarah Tanksley, a spokeswoman for TennCare, declined to say how many comments on the proposal the state had received through the comment session, email and letters so far. She said it was a common misconception that the block grant would reduce the number of people eligible for Medicaid.
“The proposal specifically states that no reductions in eligibility or benefits will occur under the proposal,” Tanksley wrote in an email. “We have tried to be clear that this proposal will bring more – not fewer – federal dollars into the state to provide more – not fewer – services.”
The State of Tennessee has a deadline of Nov. 20 to submit the proposal to CMS.
According to Tanksley, it typically takes CMS six to nine months to issue a decision regarding a proposal but it expects the process to seek a waiver to take more time.
The Associated Press contributed to this report.