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As she battles cancer, Sun City Center mom fights for Medicaid for her son

Renee Hanania took on the Florida Department of Children and Families after it wrongly said her son did not meet the “disability requirement.”
 
Renee Hanania, right, kisses her son, Branden Petro, who has been diagnosed with mitochondrial disease. The family was told that he was no longer eligible for Medicaid, meaning they would lose the services of licensed practical nurse Pamela Mason, left.
Renee Hanania, right, kisses her son, Branden Petro, who has been diagnosed with mitochondrial disease. The family was told that he was no longer eligible for Medicaid, meaning they would lose the services of licensed practical nurse Pamela Mason, left. [ JEFFEREE WOO | Times ]
Published July 20, 2023|Updated July 24, 2023

SUN CITY CENTER — Branden Petro can never be left alone.

He was 8 when mitochondrial disease began affecting his body’s capacity to convert sugar and oxygen into the energy his organs need to function. The hereditary condition makes breathing, swallowing and sleeping a struggle. He has lost the ability to talk and is dependent on diapers.

Branden, 21, also has up to five seizures a day. Each one brings the risk of cardiac arrest, so a family member always sleeps by his side.

Over the past five years, the complex medical care Branden needs has come from licensed practical nurse Pamela Mason, who works 10-hour shifts at the family home in Sun City Center. Branden’s face lights up when she enters the room.

So the family was stunned when they received notice from the Florida Department of Children and Families on June 12 telling them that Branden does not meet the “disability requirement” for Medicaid and would lose coverage that month. Without it, the family cannot afford the roughly $25,000 monthly bill that covers home nursing costs. Medicaid also helps pay for adult diapers, disposable bed pads and medication that helps reduce seizures.

The notice is similar to hundreds of thousands that the state has sent as it conducts a review of eligibility for about 5 million Medicaid recipients following the end of the COVID-19 public health emergency. Florida reported removing about 250,000 people from the program earlier this year.

The June letter set in motion weeks of desperate phone calls and anxiety over Branden’s health care as the family stepped into a labyrinth of agencies that hold sway over whether he would qualify for assistance.

Branden’s mom, Renee Hanania, has spent hours on the telephone trying to get answers through the state’s help line and stood in nearly 100-degree heat in lines outside the Department of Children and Families’ service center on North Florida Avenue. She has submitted letters to the state from a geneticist and Branden’s specialist warning that, without constant medical care, he could die.

Hanania is unapologetic about being the squeaky wheel. She has warned officials that she won’t leave their office until they provide answers and threatened to call U.S. lawmakers to take up her case.

Still, her son’s plight illustrates a Byzantine system of state and federal agencies that administer disability benefits. Hanania has been referred from one agency to another but struggled to find anyone who could tell her how she can ensure her son continues to get the care he needs.

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Her fervor is more than just that of a loving mom. Hanania had a double mastectomy in 2020 but learned earlier this year her cancer has returned and spread to her lymph nodes. She is once again undergoing chemotherapy. On her Facebook profile under her name, it says “Fighter.”

“I have to actually fight for this while I’m fighting for my own life,” Hanania said. “I don’t think about me, I think about Branden and what I have to do for him in case something happens to me.”

Naela Ayyoub, left, prepares lunch for her grandson, Branden Petro, who has been diagnosed with a mitochondrial disease, while Pamela Mason, an LPN, helps him walk at Ayyoub’s residence on July 5 in Sun City Center.
Naela Ayyoub, left, prepares lunch for her grandson, Branden Petro, who has been diagnosed with a mitochondrial disease, while Pamela Mason, an LPN, helps him walk at Ayyoub’s residence on July 5 in Sun City Center. [ JEFFEREE WOO | Times ]

Falling between the cracks, running out of time

A first sign of the red-tape nightmare that lay ahead for the family came in February when Branden turned 21.

He was automatically switched to a long-term Medicaid plan for adults. Plan provider Simply Healthcare immediately sent notices saying it would only pay for about half the number of adult diapers and bed pads, saying the supplies were “not medically necessary.”

Branden and his family were in Canada to take part in a medical trial for a drug that may slow the onset of mitochondrial disease when the notice came that he was no longer eligible for Medicaid.

Hanania reached out to the Department of Children and Families and was told that because her son had turned 21 she would have to apply to the Social Security Administration to have her son certified as a disabled adult. Her application on his behalf was denied because Branden has never worked and receives $1,100 per month in child support, well above the income threshold to qualify for additional benefits.

So she went back to the Department of Children and Families, where this time she was told her son could be approved for Medicaid by the state through the Florida Division of Disability Determinations. But, and she said “there’s always a but,” she must first appeal the Social Security denial. Until the family exhausts all of its options, the state won’t consider Branden’s case, according to Hanania.

Even then, it could take up to a year for Branden’s application to the state to be decided, department officials told her. And there is no guarantee.

In one of her last meetings with state officials, Hanania was given permission to record her conversation with a Children and Families supervisor who identified himself only by his first name, Heath. Hanania shared the recording with the Tampa Bay Times.

He told her that she should have been given more notice that her son’s Medicaid coverage needed to be renewed. He said he could extend Branden’s Medicaid coverage through the end of 2023 but it was unclear if her application to the state would be approved by then.

“I know things have gone very wrong in this case,” Heath told her. “He has not been determined disabled by one of our recognized sources.”

Many families struggle to navigate the complex disability benefits system, said Katy DiBriere, legal counsel for the Florida Health Justice Project, a Miami nonprofit that advocates for health care access.

According to the Department of Children and Families’ own policy, it should have conducted a review of whether Branden was eligible for any other category of Medicaid before they sent the notice that he was losing coverage, she said.

“If there was any indication that he was disabled, the (Department of Children and Families) should have followed up with his family asking for more information,” she said.

State officials said they cannot comment on an individual case.

“If the department makes a determination, then receives additional information to support the eligibility of another coverage option, we will reopen the case and process the additional information to determine if that individual is now eligible,” said spokesperson Mallory McManus.

Mazen Ayyoub gives medication to his grandson, Branden Petro. The medication is part of a drug trial being run out of Canada.
Mazen Ayyoub gives medication to his grandson, Branden Petro. The medication is part of a drug trial being run out of Canada. [ JEFFEREE WOO | Times ]

Branden the brave

Branden’s longtime nurse can tell he’s tired.

It’s close to lunchtime and about one hour since his last seizure. Mason clears the bed in his room so he can lie down.

Every seizure is a concern. When the convulsions cease, she and other family members work together to clear his airways of excessive saliva. They use an oximeter to check that he’s getting enough oxygen, take his temperature and check his blood pressure and pulse. The presence of a trained nurse is a reassurance to his family.

Branden was a young teenager when Mason first cared for him five years ago. She’s accompanied the family on vacations to Give Kids the World, an 89-acre resort in Kissimmee run by a nonprofit that provides weeklong, cost-free wish vacations to critically ill children and their families.

Branden now sports a mustache and stands almost as tall as Mason, but his soft expressive brown eyes are unchanged. The idea she won’t be in his life anymore is hard to take.

“You become attached,” she said.

Caring for Branden takes the whole family. While Mason watched him sleep, grandmother Naela Ayyoub prepared a lunch of rice, lamb and sweet peppers mashed with plain yogurt. Grandfather Mazen Ayyoub uses the dining table to mix medication that Branden is taking as part of the medical trial funded by the Liam Foundation in Quebec, Canada.

There is no cure for mitochondrial disease. At best, the experimental medication can stall the decline caused by the hereditary condition and give Branden more time.

After he wakes up, Mason and Mazen Ayyoub work to get Branden, whose head rarely stays still, to swallow the medicine. “Open the door,” Mazen Ayyoub gently tells his grandson while Mason follows the dose with a spoon of applesauce. It’s a routine they repeat three times a day.

Soccer and karate trophies Branden won before the disease curtailed his life are still displayed in his bedroom. There’s also a suction machine and an oxygen cylinder. A sign that says “Branden the Brave” hangs near his bed. It’s the same name as a Facebook page Hanania started in 2011 to raise awareness of her son’s condition. It has almost 9,000 followers.

The first few years of Branden’s illness were mostly dealing with seizures. It wasn’t until around 2017 that his mental and physical abilities began to decline and he started losing the ability to speak and go to the bathroom by himself.

His mitochondrial condition is the result of three genetic mutations and is progressive and, ultimately, terminal.

While Branden is fed by Mason, Hanania leaves for a chemotherapy session. This diagnosis is more serious than in 2020 but not necessarily a death sentence, she said.

“I’m going to try my damnedest to stay alive but I’m tired,” she said.

Paris Hilton, left, and Renee Hanania share the podium at an event to raise support for more oversight of youth residential care facilities in 2022.
Paris Hilton, left, and Renee Hanania share the podium at an event to raise support for more oversight of youth residential care facilities in 2022. [ Renee Hanania ]

Hanania also found herself advocating for Branden last year when she, on medical advice, placed him at a youth medical care residential clinic in Virginia. She reported the facility to local police after finding bruises on Branden. She ended up sharing a podium with Paris Hilton to advocate for a bill that would increase oversight of such facilities.

On July 12, roughly one month after the letter disqualifying her son from Medicaid, Hanania received a telephone call from a Department of Children and Families supervisor. The caller said that there had been a “big misunderstanding” and that her son is covered long-term for all his medical needs.

It’s still hard for Hanania to feel confident that everything is resolved but, for now, Mason still arrives every day. Still, Hanania is angry at the turmoil her family was put through and wonders how many other families might have also been wrongly disqualified but didn’t think there was any chance of fighting the decision.

She has already reached out to two other families she knows who also received notices they are losing Medicaid. Families can appeal a coverage loss and keep their benefits while the appeal is pending. But they could be forced to repay the states if they lose, the wording on termination letters states.

“This shouldn’t take me going there multiple times and making a big stink over the rights of my son,” she said. “No one will fight for your loved one except you.”

Nurse Pamela Mason comforts Branden Petro, who has been diagnosed with a mitochondrial disease, at his grandparents’ residence on June 30 in Sun City Center.
Nurse Pamela Mason comforts Branden Petro, who has been diagnosed with a mitochondrial disease, at his grandparents’ residence on June 30 in Sun City Center. [ JEFFEREE WOO | Times ]