Prescription drug costs are a barrier to care for many patients, but especially so for the nine of 10 Medicare beneficiaries who report taking prescription drugs regularly. In fact, 14% of beneficiaries age 65 or older say they skip taking or sometimes do not even fill their prescriptions because of the expense.
Policymakers name prescription drug costs as a top issue of concern for their constituents, and both federal and state officials are interested in lowering costs for Americans. The Inflation Reduction Act (IRA) of 2022 included multiple provisions aimed at making drugs more affordable and accessible for Medicare beneficiaries, including a $2,000 yearly limit on beneficiaries’ out-of-pocket costs for Part D prescription drugs. Understanding patient and provider experiences with drug costs could help policymakers further promote more timely and affordable access to medicines.
To get a better sense of patient and provider perspectives, we partnered with public opinion research firm PerryUndem and convened 10 focus groups: eight with Medicare beneficiaries and two with providers from a variety of specialties. The participants represented a diverse set of ages, genders, races, ethnicities, and geographic locations. They shared their experiences with prescription drugs and their strategies for accessing and affording their medications. (For focus group details, see “How We Conducted This Study.”) Below we present key themes and beneficiary insights from the focus group discussions.
Highlights
- Concerns about prescription drug costs have led Medicare beneficiaries to delay filling prescriptions and pursue other cost-cutting strategies that could affect their care.
- Medicare enrollees are becoming increasingly savvy at tracking their plan’s list of covered drugs and determining how changes to coverage affect their out-of-pocket costs.
- Medicare beneficiaries are turning to providers for help finding affordable drugs, but some providers aren’t comfortable with this role.
- Those providers who do have these conversations say having accurate drug cost data in their electronic health records can help them direct patients to more affordable drugs.
Focus Group Findings
Prescription Drugs Are Essential to Many Beneficiaries’ Well-Being
Many Medicare enrollees described their need for prescription drugs as non-negotiable — even a matter of life and death — particularly for treating chronic physical and mental illness. While many said they would prefer not to take any medication, they acknowledge the important role prescription drugs play in their health and quality of life, especially as they have aged and have had to rely on them more. They also view having access to prescription drugs as especially important.
- “[I]t took me some 20-odd years to get my correct diagnosis. I absolutely love my medication because my life is no longer a train wreck. It’s fantastic.”
- “To me, medications represent quality of life.”
“The medicines are important…to feel the best that I can feel and be able to enjoy the day.”
With Costs Top of Mind, Patients Use Several Strategies to Save Money on Medications
While most Medicare beneficiaries can manage their drug costs over the long term, many still go through periods where access and affordability are an issue, especially those on multiple medications or high-cost branded drugs. Even if focus group participants didn’t currently struggle to afford their drugs, they worried that they might in the future depending on a new diagnosis or life event that required new medication. When pricing issues arise, patients will use a variety of strategies to ensure access to the medications they need and to lower out-of-pocket costs.
Use of Generic Drugs
Almost all patients reported relying on generic drugs at some point and had very favorable opinions about them. Their primary concern was whether the drug works, and largely believed that generics worked as well as their branded counterparts. Overall, they considered generics the cheaper and better alternative, trusting their doctors and pharmacists to maintain the quality of their care. Some even proactively asked their providers if a generic alternative was available. Most participants reported nominal or no cost-sharing for their generic drugs.
- “The pharmacist will tell me this is just as good as the name brand, and it’s lower cost. So of course I’m going to take that.”
“I’m good with the generics… they cost practically nothing. That’s the best part.”
Reviewing Formularies
Participants were also attuned to their formularies, which are lists of prescription drugs approved for coverage by their plan. Patients reported checking their plan formularies each year during open enrollment to understand if their drugs were covered and what their cost-sharing would be. While other factors also contributed to plan selection (such as whether their primary physician was in their plan’s provider network), prescription drug coverage was also a factor that many mentioned. For patients on name-brand drugs, this was a bigger factor. Yet most participants reported good coverage of their generic drugs for little cost.
- “I just want to make sure… as [I] get ready for the next year… that [my insurance plan’s] not changing it up… I don’t want to be caught in that situation [where my drug isn’t covered].”
Drug Discount Programs
When patients experienced cost-related problems with their drugs, a popular workaround was using online discount pharmacies like GoodRx or Mark Cuban Cost Plus Drug Company, either of which may provide lower-priced medicines than Medicare prescription drug plans. Patients learned about these alternatives from their friends and family as well as their physicians, and those who had used them reported good experiences. Several participants who were not familiar with these companies reported significant interest in learning more and seeing if they could save money by using them.
- “I used GoodRx once and found out that I saved considerably over the cost of what I would have normally paid.”
Delaying or Forgoing Care
In some cases, cost-related problems led patients to delay filling their scripts, stretch out their prescriptions to make them last longer, try over-the-counter medications, or look for alternative sources for their medications. Any of these actions can carry serious health risks.
- “[M]y doctor actually prescribed [a drug]…and they wanted almost 300 dollars for the pills. And there was absolutely no way that I could afford that. And so, I tried the over-the-counter, and nothing over-the-counter has that many milligrams. And just trying to take the number of pills to get to that…I was nauseous all the time and it brought on migraines.”
- “But now what I do is that to stretch it; instead of taking [it] twice a day, depends on what I eat or how I feel, I take maybe one at lunchtime and then go to the next day, and then kind of play with it.”
“I cut one of my prescriptions down to half dosage just to see if it would work.”
Many Patients Rely on Their Regular Providers to Help Them Navigate Drug Cost Issues
Across our focus groups, many Medicare enrollees spoke of their trust in their providers to help them find solutions to high drug costs. While physicians were the most common providers participants spoke to about their prescription drug costs, some beneficiaries also reported long-standing relationships with their local pharmacists, who were considered a go-to resource for these issues. Participants preferred relying on providers, whether physicians or pharmacists, with whom they had developed relationships over long periods of time and who understood their specific needs.
In contrast, Medicare enrollees in these focus groups said they were more cautious about taking advice about managing prescription drug costs from physicians treating them during a hospital stay or specialists they see only occasionally. Regardless, most patients were open to providers discussing costs during health care visits, no matter their relationship. They felt positively about these discussions — many focus group participants said it shows that their providers care. At the same time, several focus group participants said while cost remains a primary concern, obtaining the “right” drug also remains the top priority.
- “You should have a good working relationship with your doctor so he or she knows your financial situation… You don’t want a doctor that just gives you the most expensive drug and says this is what you have to take… you have to have that relationship where they know you’re on [a] limited budget.”
- “[With] a specialist that I might not see real often… I don’t have the same kind of relationship. They would be less likely to be concerned about the price.”
- “If my doctor said to me, you’re going to need this drug and it’s going to be expensive… we would discuss how we were going to make that happen.… But I don’t think she’d ever not tell me about a drug because she knows I wouldn’t want an expensive one.”
Providers See Cost as a Major Issue Driving Medication Compliance
We also spoke with providers to understand their impressions of how drug costs affect access to medications and the provision of care. The physicians said Medicare patients are feeling overwhelmed in their efforts to afford medications and are increasingly mentioning costs as a concern during office visits. As a result, providers and their staff spend more time helping patients address costs. At the same time, some providers consider cost a determining factor in whether patients will follow treatment plans that involve prescription drugs. Some also noted that middle-income Medicare patients who are not able to access the protection of Medicaid coverage or low-income subsidies, which reduce premiums and copayments for patients, are the most likely to bring up cost as an issue. Ultimately, these cost issues affect compliance with the prescribed drug protocol.
- “When you start adding up seven, eight medications for one patient, while their cost of living is also going up, that’s something they bring up with me. It’s like, well, I can’t really afford the medications because my rent went up, or it’s the cost of food.”
- “[I]f they’re dual eligible [covered by both Medicare and Medicaid] or low-income subsidy [a Medicare program that helps people pay for prescription drugs], then they’re paying lower costs for their drugs. So those middle-income or lower middle-income families and patients are definitely the ones that are taking the brunt of it. They’re on fixed incomes, and they can’t afford their meds.”
“The biggest obstacle to compliance besides side effects is cost. You know if they can’t afford it, they won’t take it. And they may not tell you unless you ask them, and then that’s probably the number one reason they’re not on the drug.”
Providers Are Conflicted on Whether Their Role Should Involve Drug Cost Counseling
Many providers agreed they feel an obligation to help their patients navigate drug costs. When possible, these providers said they try to find medications that are covered by Medicare and prescribe generics whenever possible to keep drugs affordable for their patients. When cost barriers arise, they will explore alternative options so patients can afford their medications. Some providers discussed how an electronic health record (EHR) that has real-time cost data was helpful to support patient cost navigation. Providers who had accurate, up-to-date drug cost data through their EHRs were most comfortable and felt most effective addressing patient cost concerns.
- “I think it’s our job to meet them where they are and work together to find the best path forward... I think that from a cost perspective, that is one example of what we need to do when we serve our patients, and that’s really hard.”
- “When I’m with my patient in the room… I’ll tell them… I’m looking for a medicine that’s gonna be most effective for you but still is gonna be a reasonable, affordable cost for you. And I think patients appreciate that consideration.”
“Sometimes I’ll tell patients: if you get to the pharmacy and the copay is really high, call me. Let me speak to the pharmacist and see if I can work something out to put you on something else that’ll be more affordable.”
Some providers saw factoring cost into prescribing decisions as an essential part of patient care. Yet others felt that it was too big of an issue for them to address appropriately and they didn’t have the knowledge, time, or resources to manage cost considerations effectively. Some thought that the provider’s role with regards to cost of care has more to do with billing and prior authorizations.
Some providers also felt uncomfortable considering cost in their treatment decisions and worried that patients would feel they weren’t getting the best care. These providers spoke of cost discussions as one of many systemic problems that negatively impact their relationship with patients. Additionally, those who didn’t have real-time formulary and cost information in their EHR or found the data to be out of date or incorrect felt they could not have effective cost conversations.
- “To tell you the truth, we play a minimal role in helping the patients find more affordable options. So, really, we kind of ask them to identify any cheaper pharmacies or programs themselves and then we’re more than happy to reroute the prescription.”
- “There’s not enough time in the day to take care of the number of patients that you’d be taking care of. There’s a massive shortage of physicians and it’s getting [worse]… to think that physicians [would] take over the responsibility of also navigating what is such a complex process… think about how many hours are being given away for free to do this work with no reimbursement. Absolutely not!”
“I can totally relate to the idea of being… a used car salesman and having to discuss prices [with patients]… to me it’s disgusting.”
Conclusion
Patients and health care providers are increasingly having frank discussions about drug costs during care visits — sometimes looping in pharmacists as well — and working together to navigate alternative paths to getting needed medications. Still, some providers are reticent to bring up the cost issue. In the coming years, it will be important to understand the impact of Medicare’s new price negotiations, the expansion of the low-income subsidy, and the cap in catastrophic costs on patients’ ability to afford their medicines. Efforts to boost competition, such as patent reform and accelerating generic and biosimilar drugs to market, could also improve patient affordability.
Our focus group findings suggest that having affordable drug pricing and an assurance that prices will be predictable month-to-month could alleviate some of the concerns that Medicare beneficiaries have. Addressing these issues could also improve patients’ adherence to needed medications.
How We Conducted This Study
Arnold Ventures and the Commonwealth Fund teamed up with PerryUndem to convene focus groups of Medicare beneficiaries and health care providers to discuss prescription drug costs and how they impact quality of care. Ten focus groups of six to eight participants each were held in January and February 2024. The groups represented a mix of ages, genders, races, and ethnicities; one group comprising Latino and Latina beneficiaries was conducted in Spanish.
Of the 10 focus groups, six were conducted with beneficiaries ages 65 and older who take two or more prescription medications regularly. Another two groups were held with beneficiaries younger than age 65 who take two or more medications. (For those beneficiaries who could not attend, their caregivers were invited to participate instead.) Finally, two groups were held with health care providers, both primary care physicians and specialists, who prescribe prescription drugs to Medicare beneficiaries.
This article was co-written by: Erin Jones, Health Care Manager, Arnold Ventures; Andrea Noda, Vice President of Health Care, Arnold Ventures; Kate Young, Director of Health Care, Arnold Ventures; Faith Leonard, Program Associate, Advancing Medicare, The Commonwealth Fund; Gretchen Jacobson, Vice President, Medicare, The Commonwealth Fund; and Lovisa Gustafsson, Vice President, Controlling Health Care Costs, The Commonwealth Fund.
