What to Do if You Can’t Afford Your Medications

What to Do if You Can’t Afford Your Medications

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Publish Date:
30 June, 2024
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Holistic
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After Jackie Trapp was diagnosed with multiple myeloma, an incurable blood cancer, in 2015, she thought her biggest health shock was behind her. Then came the bills for Revlimid, a powerful cancer drug that her doctor said was her best hope for controlling the disease. The first month’s supply cost $11,148; the second, $12,040—and her insurer denied coverage. “I’d need to take the drug every month, for years,” says Trapp, 59, a former high school teacher and realtor from Muskego, Wis. “My husband and I had done well in our careers, we’d been frugal and we’d saved, but there was no way paying $120,000 a year or more was sustainable.”

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Figuring out how to pay for the drug that’s keeping her alive has become an all-consuming project. Trapp fought her insurer’s denial and won, and has switched health plans twice to ensure continued coverage. To afford her annual co-pays for Revlimid—$15,000 to $21,000 a year recently, before a new law capping out-of-pocket costs for people on Medicare took effect in 2024—she’s tapped into assistance programs from drug makers and grants from health care foundations. She has also drawn down savings, taken out two mortgages, sold her car, some furniture, and her husband’s classic truck, and lives as cheaply as possible, growing her own vegetables and DIY-ing everything from lawn care to hair cuts.

“I am grateful for the drug that has saved my life,” says Trapp. “But I am also resentful that the financial burden is draining my life at the same time.”

Nearly three in 10 Americans, like Trapp, struggle to afford the medications they need, according to a poll last year by health policy organization KFF. Some cope by not filling prescriptions or skipping doses, taking on debt to pay for their meds, or even foregoing basic needs like gas and groceries, according to research published last year in JAMA Network Open. But the same study found that many people have landed on creative workarounds that do not threaten their physical or financial health, including using discount coupons, switching to cheaper medications, or comparison shopping among pharmacies to find the lowest price.

“There are a range of easy solutions that may be available to you,” says Stacie Dusetzina, the study’s lead author and a health policy professor at Vanderbilt University Medical Center in Nashville. “They may not work for everyone, but they’re worth trying for anyone struggling to pay.”

Here is a closer look at six strategies that have helped lower costs dramatically for some families—and how they may help you save too.

sk members of your care team for help

The first step when you’re hit with an unaffordable price for a medication you need, says Dusetzina: talk with your doctor and pharmacist. They may be able to recommend a similar, less expensive drug that works just as well, give you free samples, or be familiar with insurance strategies and programs that can help lower your costs.

For Melissa Tavares, 32, asking the doctor if there was a more affordable drug than Vimpat, the medication prescribed to control her two-year-old daughter’s epilepsy, was initially uncomfortable. “I had some mom guilt about shopping and negotiating as if I were buying a mattress instead of life-saving medication for my child,” says Tavares, a school-based occupational therapist from Edgewater, Md. But Vimpat cost her $102 a month, nearly 10 times what she paid for Keppra, an anti-seizure medication prescribed for her three-year-old son, who also has epilepsy. “It may not be a lot of money to some people, but it was pricey for my family,” Tavares says.

As it turned out, there wasn’t a good alternative drug, but a nurse who was part of her daughter’s health care team suggested Tavares might save money by switching to mail-order delivery instead of buying the drug at a brick-and-mortar pharmacy. That reduced her out-of-pocket cost from $306 to $212 for a three-month supply. Then, an insurance representative suggested she could work with her doctor on an appeal, or medical justification, to have Vimpat covered at the same price as Keppra, since they’d tried the cheaper drug first for her daughter but found it didn’t work.

Tavares is in the middle of that process now and hopeful the cost will come down. And while the stress has taken a toll—she struggles with anxiety, depression, and TMJ, which causes her jaw to lock painfully—it’s also revealed a strength she didn’t know she had. “I’m just here to advocate for my daughter and get these prices where they need to be,” she says.

Be a comparison shopper

When Margot Cochran, 67, developed a severe intestinal infection called C. diff last year, she was stunned by the price of the cure: $1,200, after insurance, for a month’s supply of the antibiotic Vancomycin at her local CVS in Montclair, N.J. A physician friend suggested trying GoodRx, a pharmacy cost-comparison site, to see if she could get a better price elsewhere. Success! A nearby RiteAid was selling the same medication for $183 for the first month, then $153 for subsequent doses. Total savings for her three-month supply: $3,111.

“I was surprised by how much prices fluctuated from place to place,” says Cochran, a retired human resources manager. “I walked out of that RiteAid feeling on top of the world.”

Those cost differences can easily run to hundreds of dollars, sometimes even thousands, for the same medication and dosage, says Rich Sagall, founder of NeedyMeds, a nonprofit that tracks money-saving prescription programs and also offers a drug-price comparison tool. That’s partly because there isn’t a standard price that all pharmacies pay for the prescription drugs they sell; instead, individual pharmacies and drugstore chains negotiate prices directly with middlemen (called pharmacy benefits managers), then impose their own mark-ups. No single pharmacy consistently offers the best price and costs change frequently, Sagall says, so check regularly—on both new prescriptions and meds you take on an ongoing basis—to make sure you have the lowest price.

Hunt for discounts

GoodRx and NeedyMeds are also among a number of sites that offer discount coupons to reduce drug costs, in some cases by as much as 80%. Other sites that provide discounts include Mark Cuban Cost Plus Drug Company, RxSaver, SingleCare, Blink Health, and WebMDRx.

You can also nab discounts by joining a retailer’s prescription drug plan. Amazon’s RxPass program, for example, allows Prime members to purchase more than 50 common medications for a flat fee of $5 a month. GoodRx Gold ($9.99 a month; $19.99 for families) provides discounts of up to 90% on thousands of generic and brand-name drugs. Costco, Walmart, and supermarkets such as Shoprite have programs as well.

Important to note: you can’t combine pharmacy discounts and health insurance to pay; it’s an either-or proposition. And if you use the discount, your outlay won’t count toward your deductible, when better coverage kicks in. But the savings can be worth those drawbacks, says Dusetzina: “You may find you can get your drug for much, much less money if you pay cash.”

One other place to look for coupons: your drug manufacturer’s website. When Bob Parant, 71, a retired health insurance sales executive from Westbury, N.Y., was prescribed Entresto to treat heart failure in 2020, his first month’s bill came to $765, even with his Medicare Part D drug coverage. A one-time-use coupon for Medicare recipients from Novartis, the drug’s manufacturer, reduced the cost to zero. He has also used coupons to help manage spending to control his Type 1 diabetes.

“As a retiree on Social Security with no other income, it’s been stressful to see my savings whittled down each year by the cost of living with diabetes and heart failure,” says Parant, who now volunteers with a nonprofit called Patients for Affordable Drugs. “Every dollar I save helps.”

Seek help from the drug maker

Many pharmaceutical companies also have financial assistance programs that help with copays for patients who have commercial or private insurance (people on Medicare are usually not eligible) or provide drugs at low or no cost to patients who meet certain income requirements. The limits are often fairly generous, Sagall says, noting that a maximum of 400% above the poverty level—$60,240 for individuals and $103,280 for a family of four in 2024—is not uncommon, and some programs may be even higher. (Find a list of programs here and here.)

Using a drug maker’s assistance program has helped Jacquie Persson, 35, sharply cut her out-of-pocket costs for the medications she takes for frequent migraines and Crohn’s disease, a chronic inflammatory bowel condition. A graphic designer from Waterloo, Iowa, Persson has good insurance through work but faced a co-pay of around $200 a month for a drug called Stelara (list price: $27,843 for a monthly shot) to manage Crohn’s; a manufacturer’s program brought her copays down to $5. She recently switched to an assistance program for specialty meds offered by her insurer that has brought the costs down even further, to zero. Still, she says, “Not a day goes by that I don’t worry about the what-ifs: What if my insurance changes at work or what if I lose my job?”

Persson knows first hand how quickly things can change when it comes to her meds. In past years, she was able to get a monthly 16-tablet supply of Nurtec (list price: $2,123), a migraine medication, for free from the manufacturer. But that program was discontinued and her insurer initially declined coverage. Eventually she got approval from her insurer, but for only half the previous dosage, forcing Persson to bridge the gap with samples from her doctor and ration her usage; she waits to take the drug, she says, until her pain becomes unbearable. “All this just ends up running your whole life,” Persson says. “All my career moves and personal financial decisions are dictated by making sure I can pay for the drugs I need to function.”

Get a hand from nonprofits

Grants from health care foundations and associations that specialize in particular diseases can also be hugely helpful, as Janet Kerrigan, 68, a former critical care nurse from Myrtle Beach, S.C., has learned. (Check out a database of charitable organizations that offer financial assistance with drugs and other healthcare costs here.)

Kerrigan, who has multiple myeloma like Jackie Trapp, faced similarly staggering costs for the cancer drug Revlimid. After being diagnosed in 2011, Kerrigan’s first monthly co-pay for the drug came to $11,000, setting off a multi-year struggle to find ways to make her medications more affordable. “I’d spend eight hours a day researching, like a full-time job, while I was tired and drained from the cancer,” she says.

That work has paid off. Over the years, Kerrigan has gotten grants, averaging $11,000 each, from the PAN Foundation, the HealthWell Foundation, and the Leukemia & Lymphoma Society. She’s also gotten financial help from Revlimid’s manufacturer.

Still, these efforts have not been able to stave off financial hardship. To help pay for her meds, Kerrigan has also run through her 401(k), cashed in a small pension and life insurance policy, and sold her grandmother’s silver. “I’m grateful I’ve been able to live many years with a disease I was told was terminal,” she says. “But no one should have to live with this constant worry, wondering if the drugs keeping you alive will be covered.”

Lean on government aid

Some good news for patients: measures designed to help lower prescription drug costs, passed as part of 2022’s Inflation Reduction, have started to kick in. That includes, for the first time, a cap on out-of-pocket spending for anyone with prescription-drug coverage under Medicare Part D—$3,300 this year, $2,000 in 2025—plus a $35 monthly out-of-pocket cap for insulin. Starting in 2026, Medicare will negotiate directly with drug companies to lower prices on the first 10 of an eventual 60 medications.

“The savings for patients is going to be life-changing,” says Merith Basey, executive director of Patients for Affordable Drugs, a Washington D.C. nonprofit. “Medicare negotiation is the biggest lever we have to pull to help lower drug prices.”

States are also taking action. AARP reports that last year states passed nearly two dozen bills to make prescription drugs more affordable, with another 45 bills in 17 states in play this year. The 2023 measures included moves to import cheaper medications from Canada, impose caps on out-of-pocket spending, and expand statewide drug savings programs. To find out what you might qualify for in your state, check this database from the National Conference of State Legislatures and the status of recent and pending state laws from the National Academy for State Health Policy.

It was a state law requiring insurance parity for certain oral cancer medications that gave Trapp the ammunition she needed to successfully fight the initial denial of coverage for the drug that’s helped keep her alive over the past nine years. As a result, her prescription for Revlimid was processed as a medical benefit, instead of a pharmaceutical benefit. She says she feels like she’s been fighting ever since.

That’s tough to do, especially when you’re not feeling well, but patients say the potential payoff is worth the fight. “My advice is not to give up,” says Jacquie Persson, who pushed back against three denials of coverage before her latest prescription for migraine meds was approved by her insurance company. “Sometimes it feels like you hit a roadblock or you’re out of options, but if you just keep at it, all of sudden you find out about a new program or strategy, and somehow it all works out.”