For 14 years, Jesse’s mind spiraled. So did his weight. The medications he took for schizophrenia drove his weight up until he nearly hit the 300-pound mark.
His mom wanted to get him on a weight-loss drug like Trulicity or Ozempic. But in Arizona, as in most states, Medicaid doesn’t cover GLP-1s for obesity alone. The family struggled even to afford air conditioning.
At $1,000 a month, treatment was far out of reach.
Eventually, his blood sugar spiked. For the 32-year-old from Glendale, the Type 2 diabetes diagnosis was cause for celebration. Medicaid would now cover the prescription.
In less than a year on Trulicity, Jesse shed 15 pounds. His blood sugar plummeted. Then came the bad news: With the diabetes under control, he no longer qualified for coverage of the drug that was making him healthier.
“It’s like a tug of war, like, ‘OK, I’m going to wait for you to get sick again to give it (coverage) back to you,” said Jesse’s mother and caregiver, Karina Lopez.
Some private insurers would have already covered the treatment for someone at Jesse’s weight. Arizona is one of 32 states where Medicaid doesn’t cover drugs such as Trulicity and Ozempic without a diagnosis of diabetes, heart failure, high blood pressure or other related ailments.
Lopez readily discussed her son’s condition and their struggle to pay for his treatment, but asked that his last name be withheld for privacy due to his schizophrenia.
The hefty price tag for GLP-1s – glucagon-like peptide-1 agonists – puts these blockbuster drugs out of reach for hundreds of thousands of low-income Arizonans, until their health deteriorates.
“Why are we rooting for poor health to qualify for a treatment?” said Rachel Streiff, who helps Medicaid enrollees with drug-induced weight gain as the program administrator at Psych ZenHealth in Phoenix.
Budget buster
In January, state Rep. Amish Shah, D-Phoenix – who resigned his seat two weeks later and is now running for Congress – proposed a bill to mandate Medicaid coverage of FDA-approved weight-loss medications, including GLP-1s.
The Joint Legislative Budget Committee estimated that of roughly 2.1 million Medicaid recipients in Arizona, at least 282,000 and as many as 730,000 are obese and would qualify for a prescription.
If 75% of them took advantage of the coverage, the committee estimated, the annual cost to state taxpayers would range from $192 million to $496 million. The federal share could reach $2 billion, just in Arizona.
The state’s budget for 2025 is $16.1 billion.
Shah’s bill died in committee without a vote.
For patients paying out of pocket, these drugs are not cheap.
In the U.S., a month’s worth of Ozempic goes for about $969. The same drug lists for $155 in Canada and just $59 in Germany.
A month’s worth of Wegovy costs about $1,350 in the U.S., compared to $265 in Canada and $137 in Germany.
“Clearly, that’s a system where the people who are wealthier and can afford that will end up getting the medication and other people will not,” said Dr. Carol Olson, a psychiatrist at Valleywise Health in Maricopa County. “Ultimately, people will die sooner.”
‘Stuck’
States share the costs of Medicaid with the federal government. Under federal law, states generally must cover drugs approved by the Food and Drug Administration.
Drugs for weight loss, including GLP-1s, are among the rare exceptions. Each state decides whether its program will cover these treatments.
Angela Rich loves to kayak and hike. She doesn’t touch gluten, sugar or dairy. Despite the regular exercise and careful diet, the 44-year-old from Mesa has struggled with her weight for years.
Rich has lipedema, a disorder that has caused a stubborn kind of fat to build up. Ozempic offered a way out. But when her doctor prescribed it, she hit a dead end. Her Medicaid plan wouldn’t cover it.
“No way,” she said, asked whether she could afford the monthly price tag out of pocket.
Her doctor told her that if she can’t get her weight under control, she’ll be on the brink of diabetes soon.
“I’m stuck. That’s what it feels like,” she said.
‘Stop ripping us off’
Since 2003, Congress has prohibited GLP-1 coverage for weight loss alone under Medicare, the federal program for retirees and people with disabilities. (Medicaid covers low-income Americans.)
That affects Arizonans like Melissa Cox, 52, a Phoenix-area Medicare enrollee with schizophrenia.
Her sister and caregiver, Linda Cox, is frustrated that Medicare won’t cover a GLP-1 unless she is diagnosed with diabetes or cardiovascular disease.
“The whole system just is set up to basically kick in when it’s a complete catastrophe,” Linda said.
Like patients, lawmakers have vented frustration at the costs of these drugs.
At a Senate hearing on Sept. 24, Lars Fruergaard Jørgensen of Novo Nordisk, which manufactures Ozempic and Wegovy, faced tough questions about the higher prices in the U.S. compared to Canada and Europe.
“Stop ripping us off,” said Sen. Bernie Sanders of Vermont, chair of the Health, Education, Labor and Pensions committee, complaining that these treatments could “bankrupt” Medicare.
Jørgensen pledged to explore ways to make the treatments more affordable for private insurers, and for Medicare and Medicaid.
For Jesse, eight months have passed since he took Trulicity.
His mother can only watch as he gains back the weight he lost. She wonders how many times her son will have to go through this cycle — losing access to treatment the moment his health improves.
“It’s literally life or death,” Lopez said. “He has to be on this medication. We have absolutely no choice.”
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