‘Back to living life’: Spokane boy finds treatment to constant hunger caused by brain damage

When Finn Rudmann was 6, he had brain surgery. For years after, he felt uncontrollable hunger that never went away.

The rare brain condition made the Spokane boy feel like he was starving no matter how much he ate. He could not get a few hours of sleep without waking with intense hunger. His family put alarms on the cabinets and fridge to prevent him from eating everything in them.

“It was like I wanted to eat and eat and eat and eat. And I would never get that feeling like I was full – like I was done, like I could wait. And then when I couldn’t eat any more, I would just cry,” Finn, now 11, recalled.

Finn is just now getting his life back because of a treatment approved in March by the Food and Drug Administration. For the past two years, Finn was part of a study out of Seattle Children’s Hospital that led to the approval.

In recent months, he has gotten to more or less be a regular kid again. He can go to school, see friends, play with his pet bearded dragon, Beardy, and be annoyed by his older brother, all without thinking of food.

Karina Rudmann called the drug’s impact on her son “life changing.”

“This treatment has given us so much. We are back to living life,” she said.

Hypothalamic obesity

It started when Finn fell down the stairs. He was emergency flighted to Seattle, where a tumor was discovered in the first-grader’s brain. The tumor was technically benign but still damaging, so he went into emergency surgery.

The tumor was removed, but the brain’s hypothalamus was damaged in the process. That region in the brain is tasked with identifying signals sent from throughout his body. Without its proper function, Finn was left unable to recognize things everyone else takes for granted. His body struggles to control temperature, blood pressure, growth hormones and hunger.

The condition is rare. It is estimated fewer than 10,000 individuals have currently developed acquired hypothalamic obesity in the United States.

That insatiable hunger immediately took over Finn’s life. Within a few months, he had gained 30 pounds – reaching a weight of 85 pounds as a 6-year-old.

“He was in a coma for three days. And when he woke up, he was hungry. And he didn’t stop being hungry ever again,” his mother said.

When full, the body sends a signal to the hypothalamus to stop eating. That feeling of fullness often takes time to reach the brain, which is why it is recommended to eat slowly to prevent overeating. For someone with hypothalamic obesity, the brain can no longer read the signal the body sends to stop eating. No matter how much someone with the conditions eats, they never feel full.

Damage to the hypothalamus also prevents signals to the metabolism that new energy is ready to be burned after a meal. That leaves a person in a perpetual state of hunger because the brain believes it is on the edge of starvation.

Weight gain with the condition does not just come down to the large amount of food that is eaten. Because the brain believes the person is starving, it tells the body to conserve energy. This slowed metabolism means fewer calories are burned than an average person and weight is gained much more easily.

For Finn, the unrelenting hunger was compounded by short-term memory loss after his surgery. Self-control was not an option when he could not remember the large meal he had just eaten. That left his parents to monitor his food intake around the clock.

“Nobody should be forced to feel hungry, especially no kid. As a parent, it was heartbreaking to tell him no,” Karina said.

The family of four could not go out for dinner. Waiting for food in a restaurant was tortuous for Finn. The small boy would often resort to meltdowns while begging for food. The parents could barely take a shower without the refrigerator alarm going off. Life became a schedule of meals and snacks every two hours.

Karina monitored Finn’s food intake closely but often acceded to the constant demands. Most snacks consisted of fruit and vegetables. Even as her son’s weight grew, Karina wanted the large amounts of food going into his body to be healthy.

At night, Finn would wake his parents every few hours for his fruit snacks. No one in the house got a full night’s rest for years after his diagnosis.

“He would wake up so hungry. We had these little bags of cucumbers and peppers and carrots. He would just eat and then immediately fall asleep because he was so tired. So many times, I would clean the little veggies off his chest after he’d already fallen asleep,” Karina said.

Finn remembers crying himself to sleep through the hunger.

“It was hard because I wanted food, but Mom and Dad would tell me to wait. I had just eaten. But I couldn’t remember that. So I would just cry. I would just cry tears in bed because I’m so hungry,” he said.

When he was diagnosed, there was not a treatment for hypothalamic obesity. For adults, there are weight loss medications like GLP-1s . Finn was too young. A side effect of medication for attention-deficit/hyperactivity disorder reduced hunger, so they tried that. It just made Finn fidgety and hyper.

Weight loss medication is generally unhelpful for those with hypothalamic obesity. It can treat the weight, but that is not the root of the problem. An effective treatment would allow the brain to receive signals the body is full.

Setmelanotide

Seattle Children’s Hospital pediatrician and endocrinologist Christian Roth treated his first patient with hypothalamic obesity more than 30 years ago. He could not do much for his patient at the time.

“I just remember the pain in her voice,” he said. “It is such a debilitating condition.”

He resolved to find a treatment for the rare condition. Setmelanotide is a peptide that acts as a hormone developed in the past two decades to treat hypothalamic conditions. Since 2020, it has been approved by the FDA to treat several rare birth defects that impact that part of the brain.

Roth believed the drug could help with those who acquired hypothalamic obesity through brain surgery. A 2020 study of just 18 patients saw a 17% body mass index reduction within four months.

A second study run from 2022 until last year involved 120 patients across the world. There was a 16.5% BMI decrease over a year for those on the drug, compared to a 3.3% gain among the control group. Based on this study, the drug was approved for the condition in March of this year.

The drug essentially replaces the hormone signal used to signal the brain to stop eating, sending signals to an undamaged part of the brain.

The receptor used typically signals the body how much melanin the skin should produce. Because the drug increases the signaling at that receptor, a side effect of the treatment is the shade of a patient’s skin darkening. The drug can also cause nausea and vomiting in the first weeks of the daily injections.

Families saw a profound change, Roth said.

“We were told by families that this changed their lives. Children could connect with children again and participate in social activities. And that isn’t because of weight gain and loss. That’s because of the hunger. I’ve really never seen anything like it.”

That impact was certainly true for Finn, who started receiving the drug as part of the trial in April 2023. Within months, Finn was able to feel full after eating a meal. He could get through a day without every waking moment being consumed by food.

“It is not a cure. We still closely monitor food, and lots of hunger still happens. But he can live a more normal life,” Karina said.

FDA approval is a double-edged sword. The Spokane mother is grateful more people suffering will have access to the medication, but the end of the study means her family must begin the arduous process of getting the medication covered by insurance.

Producing and distributing medication for rare diseases can be incredibly expensive because there are so few people who need them. Costs that are typically spread among millions of patients must be borne by thousands instead.

Insurance companies often balk at covering the expensive therapies for a single patient in their network, according to Rhythm Pharmaceutical CEO David Meeker.

“For many insurance companies, their first reaction may be a no. Then you have to go back to your doctor and get them to explain to the insurance company exactly what the disease is and why the treatment is needed,” he said.

Rhythm specializes in developing drugs for rare conditions and created the Setmelanotide drug. Because of the high costs associated with developing rare disease therapies, the United States passed a law in the 1980s providing funding and incentives to pharmaceutical companies to develop such therapies. A disease has to have fewer than 200,000 patients in the United States. For hypothalamic obesity, the number of sufferers is much lower.

According to Meeker, insurance companies typically do approve coverage after several months of denials. For some patients, approval never comes, and the company will provide the drug for free if that is the case. Medicare does not cover Setmelanotide, and Rhythm provides the drug to those patients for free, he said.

The Rutmann family has been denied coverage of the drug and are working on an appeal. Karina is still concerned there may be a gap in coverage if it is not approved soon.

“If access … is removed, Finn would return to living with constant starvation despite eating. He would once again be consumed by thoughts of food, wake repeatedly during the night searching for something to eat,” she wrote in a letter to her insurance company.

Still, for the time being Finn gets to live a normal life. He spends time with friends, goes to school, working on jokes he hopes to perform one day as a stand-up comic. This spring, he played on a youth baseball team for the first time.

“I couldn’t really do that before. I love baseball. I get to hit the ball and run the bases, and I don’t have to worry about anything,” he said.