This story is part of Priced Out, CNET’s coverage of how real people are coping with the high cost of living in the US.
When 27-year-old Savanna Braun changed jobs last December, she had more to worry about than meeting co-workers and adapting to an unfamiliar schedule. A new job meant different insurance, and that meant jumping through hoops to get approval for her lifesaving prescription drugs.
Brandon Douglas/CNET
With insurance coverage, which costs her around $5,100 a year, she pays an extra $960 annually for medications to treat her severe asthma, psoriatic arthritis and depression. Those pharmacy benefits soften the bill — without insurance, she’d be looking at a staggering $200,000 a year.
As basic expenses increase, soaring prescription drug prices are eating up an even larger portion of household income. Over just the last year, prescription drug prices rose at an average rate of 31.6%, with some increasing up to 500%, according to a recent Department of Health and Human Services government report. Americans, who pay the highest prices in the world for prescription drugs — two to three times more than people in other countries — are finding any way possible to get around the entangled pharmaceutical industry.
Exorbitant prescription drug costs disproportionately hurt lower-income households, particularly the uninsured and underinsured populations (9% and 23% of US adults, respectively). Black, Latino and Native American people are less likely to have health insurance and more likely to face cost-related barriers to treatment, according to the Commonwealth Fund, a nonprofit focused on health policy reform. Without insurance, patients are forced to sacrifice their medications for more immediate needs, such as housing or food. Those who are reliant on prescription drugs to manage their chronic conditions can often accumulate medical debt.
Almost a third of the US adult population, including those with insurance, can’t take their prescriptions because they can’t afford it, according to Frederick Isasi, executive director of the health advocacy group Families USA. The crisis has damaging consequences: Nearly three in 10 adults end up skipping doses, cutting pills in half or not filling their prescription, resulting in long-term health complications. Others get desperate — as many as 8% of American households have purchased medications outside the US to get a lower price.
But there are far less risky workarounds. Some patients score significant cost savings by opting for generic medications, requesting alternative medication from their providers or even switching pharmacies. Others who are financially vulnerable turn to advocacy organizations, sliding-scale health centers or patient assistance plans. And many turn to third-party sites like GoodRx, NeedyMeds.org or, more recently, Mark Cuban’s Cost Plus Drug Company to cost-compare medication prices, get coupons and save at the register.
When drug costs stand in the way of patient health
Braun had her first run-in with high-cost medicine when she was 3 years old. After she had a life-threatening asthma attack, her doctors said the best treatment was an adult-only prescription. The insurance company didn’t want to cover a drug that wasn’t approved for her age group by the Food and Drug Administration, though it eventually gave in.
Controlling her asthma soon became a whirlwind of nebulizers, inhalers and steroids, all of which cut into her family’s budget. Every time her father changed jobs, she had to wait months until his benefits kicked in, and the bureaucratic obstacles to get her meds began again.
With the 2010 enactment of the Affordable Care Act, Braun’s family could no longer be denied insurance coverage or charged more for her preexisting condition. But a few years later, after Braun was diagnosed with psoriatic arthritis, she struggled with trying to find the right medication, and most of them took months for insurance to authorize. Her list of tested drugs read like a pharmaceutical representative’s brochure: Methotrexate, Humera, Solara, Remicade and Xeljanz. When her asthma worsened, her pulmonologist told her to take Xolair, but insurance initially denied her, saying she needed to have less lung function to warrant its use.
When Braun turned 26, she got kicked off her parents’ insurance plan and lost coverage for all her medications. For months, she was stuck relying on her doctor’s samples to keep her symptoms at bay. Not having access to her specialized drugs and treatment set her back. “I was losing lung function rapidly,” Braun said, noting that she now has permanent lung damage from not being able to control her asthma. Braun was constantly worried about ending up on a ventilator in the hospital without insurance coverage. “I was pretty scared for my life,” she said.
When insurance obstacles stand in the way of patient health
Julie Whitehead, 52, who has bipolar disorder, tackles similar insurance hurdles, which take a huge toll on her mental health. In 2015, Whitehead’s doctor prescribed a new mood stabilizer, Abilify, but her insurance company balked. At the time, Abilify didn’t have a generic option, so it would cost her $1,000 a month out of pocket.
Because Whitehead couldn’t afford the hefty price tag, she was prescribed a different medication, Geodon, for her bipolar disorder. But after six months taking it, she became suicidal. “I had been in a good place for five years, and then I was hospitalized,” Whitehead said.
In 2020, Whitehead’s doctor wanted to change her medication to Latuda, which required prior authorization. Prior authorization requires a lot of time-consuming paperwork, and if doctors agree to do it, they often charge for it. Whitehead had to wait three months for a green light, and in the meantime she struggled to pay out of pocket for Latuda, which cost more than her monthly Social Security disability check. Luckily, Whitehead’s husband had enough income to help her cover the cost. But the process made her angry — she was trying to “forestall a medical catastrophe,” and wasn’t allowed to because of an insurance denial.
Today, Whitehead pays around $200 a month for her 11 prescriptions under her husband’s insurance plan. “It’s one thing to be without insurance and have to depend on Medicaid and Medicare Part D,” she said. “But to pay a king’s ransom for insurance and for it to still not cover what you need, that’s in some ways worse.”
A David versus Goliath fight
As many as 28% of adults end up having to take a prescription that isn’t covered by their health insurance, and 13% have had a prescription medication dropped by their health insurance plan, according to a survey conducted by GoodRx Health. In 2016, Americans spent some $66 billion total for out-of-pocket retail prescription drugs.
Additionally, many pharmaceutical companies place the drugs that treat chronic diseases such as diabetes, asthma, HIV/AIDS and hepatitis B and C in higher specialty tiers with greater out-of-pocket prices. People of color are disproportionately impacted by these types of serious illnesses and health conditions, making such drug-tier policies openly discriminatory, according to the National Academy for Health Policy.
Disputing a denial from an insurance company for an important medication takes time and effort — it also requires a certain amount of financial literacy and tools, which aren’t generally accessible to historically disadvantaged groups. Some patients never try negotiating with or appealing to their providers or insurance companies on costs.
Vulnerable consumers going up against the pharmaceutical behemoth is a David and Goliath fight, according to Isasi. From 2000 to 2018, 35 pharmaceutical companies reported a combined $11.5 trillion in revenue. With so much in profits at stake, the pharmaceutical industry focuses its lobbying efforts on keeping drug prices high and reducing its competition by gaining monopoly power through patents.
While pharmaceutical companies claim that high drug prices are needed to cover research and development, a recent study conducted by an international team of researchers showed no association between pricing policies and R&D investments. Drug companies set the price, regardless of how much it costs to make the medication. “It’s usually a half a penny, or one cent, to actually produce that drug,” Isasi said. “Why is it that a drug company can charge whatever they can get away with?”
Alternative paths to obtaining affordable medicine
The debate over prescription drug prices has for decades taken center stage in congressional hearings and among lawmakers. The recently passed Inflation Reduction Act has an extremely limited provision allowing Medicare to annually negotiate prices with pharmaceutical companies on 10 pricey medications, starting in 2026. It also caps out-of-pocket prescription drug costs at $2,000 for those with Medicare Part D drug plans, but not until 2025.
A multitude of organizations focus exclusively on pushing common-sense reforms and achieving policy changes to lower the price of prescription drugs. But until there’s a monumental overhaul to the global pharmaceutical industry, there are a few government-based solutions that help medically underserved populations obtain lifesaving medication. For example, Federally Qualified Health Centers offer a sliding scale for certain drugs, and the federal 340B program allows certain hospitals and clinics to buy discounted outpatient prescription drugs for low-income and uninsured patients.
The next step, according to Isasi, is for patients to check if they qualify for Medicaid, through the website. Though eligibility income levels are very low, the expansion of Medicaid in 39 states has helped many financially vulnerable households cover the cost of prescription drugs. And Medicare patients age 65 or older can try applying for the Extra Help federal program to get their medicine at a very reduced, income-adjusted rate.
Patients can also try looking for coupons, rebates or price comparisons online. GoodRx offers discount coupons for all FDA-approved medications, both brand name and generic, regardless of insurance status. If there isn’t a GoodRx coupon available, the site will offer a coupon from the manufacturer to bring down the price, or show options for similar medications that may be more affordable, according to co-founder Doug Hirsch. Patients can present a GoodRx coupon to the pharmacy immediately, and the price is better than an insurance copay more than half the time, said Hirsch.
The Cost Plus Drug Company, launched by the billionaire Mark Cuban, is a new online pharmacy that slashes prices on generic prescription drugs. A recent study in the Annals of Internal Medicine, co-authored by Harvard Medical School fellow Dr. Hussain Lalani, found that Medicare could’ve saved $3.6 billion in 2020 if it purchased 77 prescription medications through Mark Cuban’s company. Uninsured and underinsured patients get the biggest benefit from using Cost Plus, Lalani said. But patients should look elsewhere if they need a brand name or clinician-administered drug, or if they need their generic medication immediately, since generics from Cost Plus come through the mail.
Read more: How to Get Cheaper Prescription Medicine With Cost Plus Drugs
Then there’s NeedyMeds.org, an organization started in 1997 by Dr. Richard J. Sagal, which assembles roughly 40,000 patient-assistance programs for people who can’t afford medication and health care costs. It’s a free, nonaffiliated information outlet, and visitors to the site are anonymous. Sagall said it receives up to 15,000 daily users looking for low-cost clinics, prescription savings, rebate programs and more. The organization also gets up to 6,000 calls a month to its toll-free hotline from patients seeking resources.
Sagall, a former family physician, said he’s helping more people through the website than he ever did in private practice. “Our ultimate goal is to go out of business for lack of need,” said Sagall. “I don’t see that happening in the near future.”
