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Terese Genecco knew early on that weight-loss drugs would deliver life-changing health benefits for millions of Americans -- and big profits for the drugmakers.
Her well-timed investment in those same drugmakers' stock was also a main reason she could afford to take a weight-loss drug. That's because her health insurer, Excellus BlueCross BlueShield, denied her prescription claim, leaving Genecco, 59, of Canandaigua, to cover the drug's $550-per-month cost, records show.
At the same time, state measures now seek to remove barriers to weight-loss drugs, as demand for the meds skyrockets amid rising concerns about costs to consumers, health insurers and taxpayer-supported health plans, such as Medicaid and Medicare.
The stakes are clear in New York, where about 4.4 million adults, or 30%, have obesity. In some counties, that adult obesity rate approaches nearly 50%, with some rural and poor communities across upstate hit hardest by the obesity epidemic.
"Some of our most vulnerable patients who have socioeconomic factors that predispose them to obesity really need the medications and cannot access them," said Dr. Jamie Mullally, an obesity medicine expert at New York Medical College in Westchester County.
"It's kind of like we have different tiers of health care just depending on your insurance coverage, which certainly seems very unfair," she added.
A weight-loss drug insurance denial
Weight became a health risk for Genecco after she hit a wave on a jet ski, injuring her back. Unable to exercise and continue her active lifestyle, she soon struggled to control her weight, despite spending months doing strenuous physical therapy and following doctor-guided nutritional plans.
Her doctor prescribed weight-loss drug Zepbound, but Excellus denied the claim in December 2023, records show.
Why did the health plan refuse to pay? It required patients to participate in a weight management program for at least three months prior to starting any weight-loss drugs. It suggested Weight Watchers was acceptable.
Put differently, Genecco's hard work in physical therapy hadn't sufficiently proven her commitment to sustaining the weight-loss benefits that could be achieved with medication.
But Genecco was all-in on getting healthier, so she paid about $40 to join Weight Watchers and $16 per month for three months to meet Excellus' policy for covering weight-loss drugs. She renewed the claim, only to have it denied, in part, because Weight Watchers hadn't provided records of her participation that met Excellus' standards.
At the time, a national shortage of Zepbound and some other weight-loss drugs had also emerged, which Excellus cited as another reason for its claim denial.
Feeling frustrated and defeated by the insurance denials and drug supply hurdles, Genecco recalled recently why she kept self-paying for the drug: "Because my doctor wanted me on it, and I wanted to lose weight, but I couldn't because of my injury."
A patient weight-loss drug success story
Since starting the weight-loss drug, Genecco has dropped 17 pounds, transforming her 5-foot-tall and now 155-pound body. The drug-fueled weight loss also reduced inflammation, ending her need for physical therapy and pain medications.
Without her stock-market returns covering the cost, however, the drugs would have been inaccessible for Genecco. She also believed her health would have continued to deteriorate without the drugs, potentially leading to more serious health conditions.
"The drug has been a success for me," Genecco said, "but it was an eight-month journey of just sticking with it and taking care of my health when my insurance company was shortsightedly denying my claim."
What Excellus says about weight-loss drugs
The Rochester-based health plan, which is part of a $6 billion group of companies that finances and delivers health care services across upstate New York and long-term care insurance nationwide, declined an interview request for this article.
In response to questions about Genecco's case, Excellus officials asserted in a statement they wanted "to make sure the medications we cover for our members have been proven to be safe and effective" for the condition.
With the weight-loss drugs, "there are concerns about non-adherence, possible side effects, and unknown long-term health outcomes," they said. The health plan's focus for all treatments, they added, was to follow clinical guidelines "to ensure the appropriate patient population has access to treatments that will benefit them the most."
Excellus' drug policies are based on a drug's federal Food and Drug Administration-approved indication and clinical studies from peer reviewed journals, the statement added, noting it was unable to comment on a single member's situation.
In the end, Excellus approved Genecco's latest weight-loss drug prescription in August, though the insurer noted it would discontinue coverage if she failed to lose at least 5% of her weight by seven months, or dropped out of her weight management program, records show.
What a NY doctor says about weight-loss drug insurance denials
Historically, the health insurance industry approached obesity treatments as medically unnecessary, said Mullally, who specializes in weight-loss medicine at Westchester Medical Center.
"It was viewed as more of an issue of vanity than a medical issue," she said, noting societal approaches to obesity began to change when the American Medical Association defined it as a disease in 2014.
But while doctors shifted their approach a decade ago, many health plans remained reluctant to cover rapidly evolving obesity treatments. And, like many medical breakthroughs, cost has been a main reason for the tension between doctors and insurers.
To understand the divide, consider many health plans cover bariatric surgery to reap future savings from its long-term health benefits for patients.
Why do they deny claims for highly effective weight-loss drugs, but approve a weight-loss surgery? Because the surgery is a one-time cost of between $17,000 and $26,000, Mullally noted, while the drugs can cost more than $10,000 per year and are part of an ongoing treatment that can last a lifetime.
At the same time, many people switch health plans over a lifetime, she added, and they may not develop the heart attack or severe implications of obesity until many years later.
Put simply, untreated obesity becomes a future cost problem for another health plan or, in some cases, Medicare.
Meanwhile, growing numbers of health plans now cover new-generation weight-loss drugs for diabetes -- acknowledging the short- and long-term cost benefits -- but they continue to deny obesity-related claims.
Put differently, Mullally said: "Unfortunately my patients have to develop diabetes to get covered; It's extremely frustrating and doesn't make any sense medically."
What to know about NY weight-loss drug legislation
Meanwhile, millions of poor and low-income New Yorkers lack access to weight-loss drugs entirely because Medicaid doesn't cover the medications.
State lawmakers have proposed a bill that would lift the Medicaid ban, citing the urgent need to aid millions of New Yorkers with the highest obesity rates and other health conditions being treated with weight-loss drugs, such as heart disease.
That bill, which failed to move beyond committee debate this year, would require Medicaid to cover "prescription drugs approved by the federal Food and Drug Administration for chronic weight management in adults with obesity with at least one weight-related condition."
One patient who would benefit is Mary Way, 49, of Gloversville, who's been fighting since May to convince state Medicaid regulators to reverse their denial of her weight-loss drug prescription. Federal officials this year approved Wegovy to curb heart attack and stroke risks, she noted, which opened up coverage for elderly cardiac patients through Medicare while those on Medicaid with similar conditions remain stuck in limbo.
Addressing the unequal access to a potentially life-saving medicine, Way said: "No one deserves to die because of bureaucracy and greed."
Another state measure aims to require comprehensive health insurance coverage for treatment of obesity, "including coverage for prevention and wellness, nutrition counseling, intensive behavioral therapy, bariatric surgery and FDA-approved anti-obesity medication."
That bill, which maintains health insurers' ability to determine the medical necessity of the prescription, also remained in early committee debates.
The Biden administration on Nov. 26 also announced plans to provide coverage for a class of costly anti-obesity medications including Wegovy and Zepbound for those enrolled in Medicare and Medicaid. But it remains unclear if the proposal would receive the necessary final green light after President-elect Donald Trump takes office next year.
Federal officials estimated the anti-obesity drugs would cost Medicare and Medicaid about $40 billion over a decade. States would be expected to pay for about $3.8 billion of that total amount for Medicaid enrollees.
National debate over Wegovy, weight-loss drugs
As the list of medical uses for these drugs grows, more people are asking their doctors for a prescription for meds that can cost more than $10,000 per year. Meanwhile, employers and health insurance plans are attempting to slow spending on these drugs.
North Carolina's health insurance program for state employees earlier this year discontinued coverage for select prescription weight-loss medications, citing the high costs.
What are obesity, diabetes rates in New York?
At the same time, about 1.7 million adult New Yorkers have diabetes -- which is a top condition being treated by Ozempic, state data show. And the condition is disproportionately affecting more Black adults (nearly 15%) than white (9%) and Hispanic (11%).
In Monroe County, about 10% of adults have diabetes, slightly below the state average of 11.4%. Orleans County had the highest adult diabetes rate in the state at nearly 17%. Monroe's adult obesity rate is about 31%, while Orleans rate is 48%.
By contrast, Westchester and Rockland counties had adult diabetes rates of about 10%, with adult obesity rates of 24% and 25%, respectively.
Access and affordability gaps are prevalent in health care
The rise of weight-loss drugs, in many ways, epitomized the myriad reasons health care, in general, is rife with access and affordability gaps.
Weight-loss drug prices are unaffordable for millions in need due, in part, to laws and regulations that reward pharmaceutical companies that prioritize making blockbuster medicines, which cost billions of dollars to develop and carry major risks of never reaching shelves.
At the same time, drugs that are far less profitable -- but equally crucial to millions of patients -- struggle to compete for space on the manufacturing line, such as insulin supply shortages resulting from the weight-loss drug gold rush.
Meanwhile, some patients seeking access to weight-loss drugs clash with health plan policies designed to limit access due to high-priced drugs.
But for Genecco, who worked as a commercial insurance agent for a time, navigating systemic roadblocks was familiar territory. Recalling her approach to repeated health insurance weight-loss drug denials, she said, "I don't take no for an answer -- especially when I see something is wrong."