Influence of policy, regulation, and insurance on clinical decision making.

Journal of Affective Disorders 281 (2021) 41–50

Available online 15 October 2020 0165-0327/© 2020 Elsevier B.V. All rights reserved.

Research paper

Experiences of health care costs among people with employer-sponsored insurance and bipolar disorder

Jeanne M. Madden a,b,*, Carina Araujo-Lane b, Phyllis Foxworth c, Christine Y. Lu b, J. Frank Wharam b, Alisa B. Busch d, Stephen B. Soumerai b, Dennis Ross-Degnan b

a Northeastern University School of Pharmacy, USA b Department of Population Medicine, Harvard Medical School and Harvard Pilgrim Health Care Institute, USA c Depression and Bipolar Support Alliance, USA d McLean Hospital and Department of Health Care Policy, Harvard Medical School, USA

A R T I C L E I N F O

Keywords: Bipolar disorder Cost-sharing Health insurance Access to health care Medication nonadherence Psychotropic drugs Psychiatry Psychotherapy Quality of life Qualitative research

A B S T R A C T

Background: Cost-sharing disproportionately affects people with chronic illnesses needing more care. Our qualitative study examined lived experiences navigating insurance benefits and treatment for bipolar disorder, which requires ongoing access to behavioral specialists and psychotropic medications.

Methods: Forty semi-structured telephone interviews with individuals with bipolar disorder and employer- sponsored health insurance, or their family caregivers, explored health care needs, coverage details, out-of- pocket (OOP) costs, and perspectives on value. An iterative analytic approach identified salient themes.

Results: Most individuals in our sample faced an annual insurance deductible, from $350-$10,000. OOP costs for specialist visits ranged from $0-$450 and for monthly psychotropic medications from $0-$1650. Acute ep- isodes and care for comorbidities, including medication side effects, added to cost burdens. Medication non- adherence due to OOP costs was rare; respondents frequently pointed to the necessity of medications: “whatever it takes to get those”; “it’s a life or death situation.” Respondents also prioritized visits to psychiatrist prescribers, though visits were maximally spaced because of cost. Psychotherapy was often deemed unaffordable and forgone, despite perceived need. Interviewees cited limited networks and high out-of-network costs as barriers to specialists. Cost-sharing sometimes led to debt, skimping on nonbehavioral care or other necessities, exacerbated or prolonged mood symptoms, and stress at home.

Limitations: Volunteer respondents may not fully represent the target population. Conclusions: Many people with bipolar disorder in US employer-sponsored plans experience undertreatment,

hardship, and adverse health consequences due to high cost-sharing. More nuanced insurance benefit designs should accommodate the needs of individuals with complex conditions.

1. Introduction

Bipolar disorder (BD) is a serious mental illness affecting over 4% of Americans, (Merikangas et al., 2007) characterized by abnormal shifts in mood, energy, and activity level. (Diagnostic and Statistical Manual of Mental Disorders, 2013) Episodes remit and usually recur. Poor out- comes are common and include low quality of life, disability, suicide attempts, and death. (Judd et al., 2002; Judd et al., 2003; Grande et al., 2016) Individuals with BD can live satisfying, productive lives especially if they can access appropriate, evidence-based treatment, including chronic psychotropic medications with monitoring of outcomes.

(Janney et al., 2014) In the US context, most patients require two specialist providers. Psychiatrists primarily focus on evaluating and treating BD, monitoring for recurrences, identifying and treating com- mon co-occurring psychiatric conditions (e.g., anxiety and substance use disorders), addressing medication side effects, and ensuring day-to-day functioning. “Medication management” visits may be 15–30 min every 1 to 3 months during maintenance periods. Even with pharmaceutical treatment, patients may have residual symptoms that impair func- tioning. (Samalin et al., 2016) Psychosocial treatments can improve outcomes; psychotherapy visits (usually with non-physician providers such as psychologists or clinical social workers) may be as long as an

* Corresponding author. E-mail address: [email protected] (J.M. Madden).

Contents lists available at ScienceDirect

Journal of Affective Disorders

journal homepage: www.elsevier.com/locate/jad

https://doi.org/10.1016/j.jad.2020.10.033 Received 29 April 2020; Received in revised form 2 September 2020; Accepted 12 October 2020

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hour and occur 1 to 4 times monthly. Therapist visits focus on psycho- education about BD, understanding feelings and behaviors, and building skills to address residual symptoms and prevent future episodes. (Grande et al., 2016; Geddes and Miklowitz, 2013; Connolly and Thase, 2011; Swartz and Swanson, 2014)

A salient feature of US health care (Tikkanen et al., 2020) is the predominance of commercial, employer-sponsored insurance among nonelderly adults; there are wide variations in its coverage generosity and structure, complex contracting arrangements, and pervasive use of economic incentives. Substantial patient cost-sharing requirements in some types of insurance are meant to discourage discretionary use of nonessential health care services and to reduce overall health care costs. [For further details on US health insurance, see Footnote A.] In the last two decades, high deductibles (~$1000–7000 annually) have become common features in US commercial plans. Covered services that are subject to a deductible must be paid 100% out-of-pocket until the annual deductible has been met, after which those services have much lower levels of cost-sharing. All cost-sharing disproportionately affects plan members who have chronic illnesses that require continuous care. (Collins et al., 2019; Rice et al., 2018).

This qualitative study used in-depth interviews to explore personal experiences navigating and paying for BD care. It was nested in a larger project with a separate quantitative study of insurance claims data that estimated the impacts of being switched by one’s employer from a low- deductible to a high-deductible health plan. (Lu et al., in press; Wharam et al., 2020) The interviews study aimed to capture a diversity of ex- posures to different employer insurance plans and foster a real-world understanding of patient cost-sharing, beyond the observations of dif- ferential utilization and payments by plan type that are possible using claims data.

2. Methods

We conducted 40 semi-structured telephone interviews with in- dividuals with BD (n = 28) or family members closely involved in the care of someone with BD (n = 12). All 40 individuals with BD were nonelderly adults enrolled in employer-sponsored insurance plans. We recruited respondents nationally through the Depression and Bipolar Support Alliance (DBSA), the largest US advocacy organization focused on depression and BD. (Depression and Bipolar Support Alliance, 2020) Our DBSA co-investigator distributed paper and electronic flyers to leaders of approximately 300 local DBSA chapters and performed pre- liminary screening of potential respondents. The flyers used neutral language, expressing our interest in how people “obtain mental health care and manage the costs of care.” A skilled research assistant carried out secondary screening, consenting, and interviews between May 2016 and April 2017.

To the extent possible within our volunteer pool, we sought diversity across characteristics that we expected would affect individuals’ ability to access care: age group; presence or absence of major somatic comorbidities; high deductible versus low/zero deductible health plan; and US region. In practice, little selection was necessary because vol- unteers were fairly diverse along these dimensions; however, our final call for volunteers targeted underrepresented regions. We deliberately included family members among the respondents because they often play prominent roles in BD care and in the DBSA community, and to ensure inclusion of cases with potentially greater severity. One-hour interviews probed key domains developed a priori, including satisfac- tion with care, current health care routines, costs and affordability, navigating systems of care, and decision-making in the face of cost constraints. Based on prior research, we anticipated that costs and administrative complexity could pose barriers to care for some in- dividuals, but the real-world character of such concerns and how people cope were open questions. Emergent themes within our study domains were pursued further in subsequent interviews, when appropriate, with refined probing. Respondents received a $50 gift card in appreciation.

Interviews were recorded and transcribed verbatim. Results were developed by two researchers (JMM, CAL) through an iterative immersion-crystallization (Borkan J. Immersion/crystallization, 1999) process that included multiple cycles of independently listening to re- cordings and reading transcripts followed by reflection and discussion. Through this process, assisted by coding in Nvivo [QSR International Pty Ltd] and Excel [Microsoft Corporation], we identified, elaborated, syn- thesized, and organized themes from interviews. These thematic ana- lyses (Borkan J. Immersion/crystallization, 1999; Braun and Clarke, 2006) began early during the interviews and saturation of major themes was achieved prior to completion of the 40 interviews (a predetermined target intended to be generous enough to ensure saturation). In our pragmatic, descriptive approach, respondents’ reports were largely taken at face value. Regular feedback from the larger project team, a stakeholder advisory panel, and community outreach on DBSA social media platforms further informed our analyses and interpretation of results. (Depression and Bipolar Support Alliance, 2020; Forsythe et al., 2019; Madden et al., 2020) Filler words have been removed, without ellipses, from the quotations presented. The study was approved by the Harvard Pilgrim Health Care Institutional Review Board.

Table 1 Characteristics of the interview respondents and the individuals with bipolar disorder.

Total study N 40 Characteristics of the interview respondent n Individual with bipolar disorder 28 Family caregiver 12

3 fathers, 2 mothers, 4 husbands, 3 wives US state: 13 IL, 5 CA, 4 NJ, 4 VA, 2 MA, 2 MD,

1 each from GA, IN, MI, NC, NY, OH, PA, SC, TX, WI Characteristics of the individual with bipolar disorder n Female 32 Male 8 Aged 18–30 y 13 Aged 31–50 y 14 Aged 51–64 y 13 White, non-Hispanic 29 Asian American 5 African American 2 Other* 4 Major somatic** comorbidity, yes 18 Major somatic comorbidity, no 16 Major somatic comorbidity, uncertain 6 High deductible plan (included $1000 and higher) 18 Low deductible plan ($350 to $800) 11 Zero deductible plan ($0) 11 PPO plan*** 26 HMO plan*** 9 Other or unknown plan type 5 Currently using psychiatric medications 35 Currently seeing a psychiatric prescriber 36 Currently seeing a therapist 26

Notes: * Other race/ethnicities reported included Native American, Hispanic, Middle Eastern, and mixed race/ethnicity. ** Interviews did not explicitly inquire about psychiatric comorbidities, but rather, only “other illnesses” being treated. Psychiatric comorbidities were frequently discussed during interviews but are not included in the enumerations above. *** A PPO is a “Preferred Provider Organization,” which has a list or “network” of approved providers contracted at discounted payment rates and available to members at lower cost-sharing; higher cost-sharing applies to “non-network” providers. A “Health Maintenance Organization” or HMO generally has lower monthly premiums than a PPO, but limited or zero coverage of non-network providers.

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3. Results

3.1. Study population

Interview respondents (including individuals with BD, spouses, and parents) were unrelated to each other. Table 1 summarizes the charac- teristics of the respondents and the 40 individuals with BD they repre- sented. The caregivers were asked only about their relationship to the individual and state of residence. Of the individuals with BD, who were the focus of our interviews, 80% were female. We achieved approximate balance by age, comorbidity status, and presence of an annual deduct- ible in the insurance plan. Examples of comorbid somatic conditions categorized as “major” were cancer, kidney disease, and diabetes; other conditions ("uncertain") included musculoskeletal pain, essential tremors, and sleep apnea. Sixty percent of individuals with bipolar illness had somatic comorbidities requiring recent health care and many had multiple comorbidities.

3.2. Satisfaction with care and priorities among types of care

Interviews opened asking if respondents were generally satisfied with the care received for BD. We summarized “satisfaction” based on that exchange and related passages throughout the subsequent inter- view. Each story was unique and complex, with clinical, insurance, and personal issues often entangled. Many respondents maintained a steadfast positive outlook despite tough circumstances. An illustrative quote:

“That was definitely one that I am in debt over. When I was discharged, I had no idea there was a fee that I had to pay. … Then I got another unexpected bill for what wasn’t covered. … about $1700. … I had never experienced that before, and I’ve had years and years of hospitalizations. And they just explained to me, this is [new insurer]. So, you know, there really wasn’t much I could do about it. At least, I did have coverage, that’s the way I look at it. … There’s just a lot of people who can’t even afford meds, or doctors. So, I still feel quite fortunate.”

Overall, half of respondents were satisfied with their health care and insurance coverage situations, while a quarter were clearly dissatisfied, and another quarter expressed mixed feelings. A frequent theme was the importance of having insurance in order to access care for BD:

“Because without the insurance, one month was about $3000. And that was just for one medication. So, I was adamant that we be on health insurance. There’s no way we’d be able to provide – and that was extremely scary, knowing that.” “If I did not have insurance, I would be an unmedicated person with a very serious mental disease, and I would be sucking the medical system. I would be in the hospital for all kinds of reasons. … I can stay proactive in my care. … I can get the help I need, when I need it, and there is con- sistency in that treatment. I see the same doctor. I see the same therapist. I know what my costs are going to be. I see the same pharmacist. And if it doesn’t work, then I can go back. These are all blessings to me … I’m very blessed to have insurance.”

Asked what was most important for their care and well-being, re- spondents offered wide-ranging replies, including factors beyond the formal health care system, such as, “preventative measures … making sure that I sleep enough … eat healthy … do meditative practices.” However, the majority prioritized medications for BD and/or access to a psychiatrist who could prescribe these medications:

“… Because without my meds, iI would not be able to live” “That’s one of the house rules now. You have to be on meds. And I assured him at that point, there will always be money for medication.” “Psychiatric and medication would be right at the top of the list. Those two I would not compromise on.”

“We have always filled every prescription and my wife has taken her pills very faithfully … It’s extremely important that we get the medications and we will continue to do whatever it takes to get those medications.” “The psychiatrist would be first. … because I need my medication. … the only way to get it is through him.”

3.3. Cost burden, affordability, and underuse of care

The burden of health care costs varied greatly, as did individuals’ ability to meet these costs. Health insurance plan benefit designs also varied widely, consistent with our sampling strategy. For example, de- ductibles in our sample, when present, ranged from $350 to $2500 per year in individual plans, and up to $5000 for a family and $10,000 for out-of-network care. What fell subject to the deductible also varied, for example: specialists only (which for some included behavioral health therapists and for others did not); procedures only; and, out-of-network care only. Medications were sometimes subject to the deductible and sometimes not. Several respondents reported meeting their deductibles predictably each year. Deductibles were occasionally confused by re- spondents with out-of-pocket maximums.

Most respondents routinely took psychoactive medications and re- ported using generics for which they paid less than $100 per month total, with no difficulties affording these costs. We asked if individuals ever went without medications due to costs while on their current in- surance plan. Respondents answering in the affirmative included 4 in- dividuals who had not filled prescriptions for expensive branded medications, specifically: a somatic treatment; an overdose rescue drug; and, three antipsychotics. One of the antipsychotics was not covered by the respondent’s plan. A different respondent had just changed to a new plan with drugs subject to a high deductible and she could no longer afford her two antipsychotics (totaling $1650 per month). A fifth indi- vidual ran out of generic lamotrigine after her psychiatrist adjusted her dose and she could not afford to refill because she had reached her plan’s monthly quantity limit. Five more respondents volunteered that they had not filled prescriptions due to cost in a previous insurance plan. Separately, five individuals were not currently taking any medication for BD. In one of these cases, the person was untreated because of problems accessing a psychiatrist; the others went untreated by choice. (Addi- tional reported examples of underuse of care appear in Table 2).

The reported out-of-pocket patient cost of a mental health specialist visit ranged from $0 to $450; payments between $20 and $200 were more typical. An HMO enrollee reporting that she faced zero copay- ments for psychiatrist and therapist visits stated that a California- specific policy change resulted in all her visits being deemed “follow up” and therefore not subject to copayment. The $450 copayment re- ported by a different respondent was after partial plan reimbursement for an out-of-network psychiatrist seen twice annually. Psychiatrist visits were typically costlier than therapist visits and more likely to be out-of-network or subject to a deductible, thus increasing visit costs to individuals. However, non-psychiatrist therapy visits, when needed, occurred more frequently, increasing the annual cost burden from these services.

Inadequate access to mental health specialists in-network was among the most prominent themes emerging from interviews. Respondents expressed specific concerns about a shortage of psychiatrists, providers refusing to deal with insurance and its hassles, and the lack of genuine mental health parity either within their own health system or nationally. Many respondents perceived a choice between suboptimal in-network providers and out-of-network providers who had to be paid 100% out of pocket. Individuals made different choices about out-of-network care, weighing their financial circumstances, plan network adequacy, clinical complexity, and stage of recovery.

“This particular psychiatrist, it would be nice if he was covered. I feel very confident going to him, and I know I’m not going to be getting the same

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quality of care, going to somebody else. … I’m not going to be seeing somebody who’s known me since before I took medication, and who’s traveled with me along the journey of finding the right medications, and who has the expertise about medications and behavior with this illness. I’m going to somebody who I’m sure doesn’t have the same qualifica- tions.” (individual in recovery about to go in-net due to costs) “My therapist before this one, and the reason I had to switch, even though the earlier one was much better, she wasn’t with the network. And it was almost $200 versus $40. She’s really good and definitely really helped me. … but it’s not feasible, financially speaking. So, it’s affected the quality of my care, for sure.”

Three individuals were not currently seeing a psychiatrist because they did not want medications, while another had faced cost-related delays getting the primary care referral needed for coverage of a psy- chiatrist visit, and she was still awaiting her initial psychiatrist appointment. Of 14 respondents reporting no current therapist, 8 indi- cated this was personal preference, while 6 said network or cost barriers were the reason. In all, compared to perceived need, 18 respondents reported current underuse of psychiatrist or therapist visits due to costs.

Half of the 28 respondents with recent acute or post-acute care (including hospitalizations, emergency department visits, and intensive outpatient programs) reported struggling with these costs. Acute events

Table 2 Adverse consequences of the burden of high costs of care described in interviews, with illustrative quotes

Type of Adverse Consequence (numbered example in right column) Illustrative quotes from interviews

Underusing care for bipolar disorder • Minimizing psychiatrist visit frequency (1,4) • Quitting therapy or reducing therapy frequency (2,3,4,5) • Delaying needed care until next paycheck or deductible is met (2) • Not filling prescriptions or taking less medication than needed

(6,7,8) • Faking wellness to avoid or shorten hospitalizations (10) • "Hoarding" (not using) needed visits when annual visits are capped

1 “I have tried to stretch out the psychiatrist appointments as much as I can. [The consequence is] just more added stress. ... sometimes you just feel more secure checking in on someone more frequently than three months.”

2 “If it was before the deductible and I had some issue going on, I would find myself holding it together and being like, it’s OK, I can wait until I see him next ... I would talk myself down and be like, I’ll just wait, it’ll be OK. But if it was after my deductible, because it’s so much significantly lower, I don’t even think twice, I would reach out. [The consequence of not reaching out is] my depressive episodes could last a little longer. ... In that moment, I’m suffering more or longer.”

3 "If I had my way right now, she would be going to individual therapy, but it’s just not possible now. We can’t do anything until the new year starts again. And even then, 25 visits, that’s once every 2 weeks. With a therapist, that’s really barely enough. Probably not adequate.” (A few months after daughter’s suicide attempt; capped therapy benefit through a public sector employer)

4 “I see my doctor, therapist, less than I would if I didn’t have such a high deductible plan. But luckily, I’m in a maintenance mode that I can just see my psychiatrist every three months. Right now, I haven’t been seeing a therapist because of the cost.”

5 “I wish that I could go to therapy every week, and I wish that, as I talked about, that, I was suicidal, that I could get the help that I needed, and not have to worry about it. There have been times where the bills that I have put on my parents, or on myself, that would make me want to kill myself. It’s not just being bipolar; it’s the whole accumulative process.”

6 “I was actually working in a restaurant out there and living paycheck to paycheck. I did run out of my medication I was on then and couldn’t pay for it. ... There’s definitely repercussions. When I don’t take the quetiapine, I can’t sleep. I’ll get maybe one hour of sleep – and then just feel like crap. ... The lamotrigine, I ran out of one time. That’s a mood stabilizer. When I didn’t take that for a few days, I felt like much more irritable and up and down. It was much harder to regulate my emotions.” (On parent’s insurance)

7 “About three months ago, I did that [due to cost]. I lowered the dose, was disregarding the dosage for Lamictal. And for Vraylar, I just didn’t fill it. And that caused me to go into a manic episode.”

8 “[Not filling my prescription due to cost] was detrimental to my health. It increased suicidal thoughts.” 9 “When I got the notice in the hospital that the insurance had been changed and that I was going to owe this other

amount I just about had a new nervous breakdown and I went crying to my case manager that I was talking to in the hospital. And I said, ‘Oh my God, I can’t pay this, I might as well kill myself.’ And she said, ‘No, the hospital will work it out with you. We have payment plans.’ “

10 “Now I’m just really good at hiding when I’m depressed or manic... [The cost of a hospital visit] makes you scared to talk to people about actually feeling bad. I think people with bipolar and other personality disorders hide that kind of feeling. Because doctors are legally bound to respond, which is a good thing, but also if you don’t have insurance, or if it’s so expensive even with insurance, you just end up suppressing all of your emotions. Even to therapists and doctors, who are supposed to be the one people can talk to.”

11 “Money is the number one thing that my parents fought about. ... [Paying for my care] definitely contributed to a heck of a lot more stress, a lot more fighting ... and that stress negatively impacted my mental health ... made it harder to go after treatment, because I didn’t want to get into fights with my parents about spending too much money. ... Definitely a lot of bickering and fighting ... which didn’t help my mental health and probably made it a bit worse.”

12 “We put off for her some of her routine medical care. She’s interested seeing her regular doctor, seeing the gynecologist. But, that’s an extra $25 here $25 there. Again, it doesn’t sound like a lot, but tacked onto the hundreds of dollars of therapy and medication, it’s just been more than we can handle.”

13 “I’m now on the fixed income and retirement. We’ve spent, in the past few years, almost 50 percent of my fixed income on her medical expenditures. So, yeah, it cuts into savings quite a bit. … We make the choices elsewhere, not in the care. … [Her mental and somatic conditions] are all fatal. So, it’s a life or death situation.”

14 “I had to take a loan ... for medication, my old hospital costs, since I had to pay my mom back right now. And it’s still not enough, the frequency of my therapy and psychiatric visits.”

15 “Just to see an orthopedic doctor for five minutes cost me $110. So, you wait and hold off on treatment because of how high you have to hit before you get to the deductible. … The pain really had brought me down quite a bit. So, I was feeling some low-level depression. Not bipolar depression but just from the pain holding me back from being able to exercise and being as active with the kids.” (Waited 9 months in before seeking treatment for continuous hip and back pain.)

16 “In 2014 my out-of-pocket costs for medical were over $14,000 and, at that time, I had talked to some family members about helping us through that financial difficulty, but I ended up picking up enough overtime and other things at work.”

Inadequate care for bipolar disorder • Seeing providers perceived as underqualified • Disrupted continuity of care Cutting back in other spending areas • Underusing health care for somatic illnesses or for other family

members (12,15) • Cutting back on housing, education, groceries, heat/AC, work

clothing • Cutting back on restaurant meals, socializing, gym membership,

vacations; not replacing old car • Moving to city with cheaper housing • Renting out the family’s second home Financial problems • Medical debt, paying in installments (9) • Credit card debt • Working overtime or second jobs (16) • Borrowing money from family members (14) • Taking out loans for treatment (14) • Withdrawing from savings or saving less than planned (13) • “Job lock” (staying in suboptimal employment for the employee

benefits) Increased life stress • More stress (1,11) • Reduction in quality of life • Family arguments (11) • Guilt about being a burden on family or on providers who give

financial breaks (5) • Shame of not being able to afford what one needs • Worrying about future health declines or bipolar episodes, costs of

care, and decreases in insurance coverage Worse health • Increased anxiety • Increased depressive symptoms (15) • Increased manic symptoms (7) • Mood dysregulation (6) • Increased suicidal thoughts (5,8,9) • Longer episodes (2) • Unadjusted medications

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are unplanned and respondents described difficulties controlling costs during a crisis, especially when the individual may have diminished capacity, when families lack key information, or when plans restrict use of affiliated institutions and providers. People frequently felt swept along by care processes.

“I was in the waiting room, and the therapist insisted that [my daughter] needed to go to the emergency room and she would escort us there, and she thought [my daughter] needed to be admitted to the hospital. So, we went to the nearest hospital. I didn’t have a choice, if it was in our plan or not. And that was a really stressful thing, not knowing what would be covered or what wouldn’t. … In an emergency situation, … you can’t say ‘Well, … I’m going to take a cab to the other hospital. I don’t think we need an ambulance.’ They think you need an ambulance, they’re going to … make you take on those costs. … I really felt like a lot of things are out of our hands, and there’s no person to negotiate with, and you’re not in a good position to negotiate.”

We did not summarize cost burdens for acute care episodes because most respondents who discussed these were still paying in installments or disputing the portion owed. Several reported that their plans had refused to cover needed post-acute services, resulting in undertreatment.

Many respondents faced additional costs for treating comorbid conditions. The comorbid conditions were often tied by respondents to their BD, particularly medication side effects, such as metabolic conditions.

“I have an ophthalmologist that I see … The psychotropics, that I’ve been on for years, have caused several things. I have dry eyes. And I’ve had dry mouth, to the point, it caused my gums to shrink. And now I have cavities at the bottom of my teeth. To fill those cavities … $300 a tooth, or more. I’ve got about $1000 worth of dental work that I need done, that I don’t have the money to do. That’s all because of the psychotropics … So, I’m looking at trying to go over to the dental school in [city] and seeing if I can get some of the work done by a student. That’s not a thrilling prospect. But neither is walking around with black holes in the bottom of my teeth, where my gums used to be.”

Several respondents reported no problems at all affording their care, while others indicated that they were getting by despite difficulties in affordability. Being able to afford necessary care appeared at times a point of pride:

“I have never allowed cost to interfere with doctor visits or medication or hospital stays. We live within our means.” “[Your study is] looking for different kinds of families. So that you have a variety of input. And we’re not a family who cannot afford good medical care for our son when it’s necessary … we would just pay, if we have to. If we weren’t covered, we would still have to pay. Because those are our values. And frankly, it’s because we’re fortunate.”

3.4. Adverse consequences of high health care costs

Given the high priority respondents placed on mental health care, it is unsurprising that many responded to cost burdens by cutting back in other spending areas (Table 2). Some of these trade-offs clearly threat- ened well-being.

“You don’t eat out as often. You stop having the AC on when the heat index rises. You turn the heat way down in the winter, much more so, before the pipes burst.” “I can only afford so much for healthcare. And I have to take care of myself, and I have to take care of her. So, if I have to make a sacrifice, I usually make a sacrifice in terms of my own healthcare: dental, MRIs,

endoscopies, cat scans. That hasn’t worked out so well. I was hospitalized and quite near death earlier this year, so I kind of have to revisit that policy.” (father of woman with BD)

For some individuals, high costs of care resulted in worsened per- sonal finances (e.g., debts or inadequate savings) or major lifestyle im- pacts. One young woman changed to a less expensive graduate school and city as her treatment costs accumulated, while another was planning a hasty marriage to secure insurance before aging out of her parents’ plan. Respondents described extra stress stemming from high costs of care, or guilt or shame about their inability to afford needed care on their own. People shared vivid bad experiences from earlier in their lives when they could not afford care, which made the dangers of forgoing or delaying care obvious to them. Further, several respondents expressed a sense that their financial, employment, or insurance situation was fragile, and things could fall apart suddenly with dire impacts.

“The atorvastatin? … I’m stocking up on it, actually … since it’s only $3.60. I can afford it now, and who knows? In the future, I may not be able to, if the insurance drops out.” “Thus far, we haven’t had to forgo anything, or you know, make any of those really difficult decisions on whether to get care or to not get care due to what we can afford, but it doesn’t seem that far off either. Just the way our finances are, and the way our insurance seems to be covering less and less every year.”

Individuals’ health was directly threatened by underuse of care due to costs. Respondents told stories of cost-related skipping of medications or visits that led to prolonged episodes or dangerously worsened symptoms. In addition, many respondents explained that their acute episodes were triggered by stress, highlighting potential indirect harm due to cost pressures.

“I haven’t cut it out completely, but I have had to reschedule because something came up and I had to use that $30, or I had to plan for the next paycheck – to see them then. … It does make it harder sometimes to manage my stress level or, when things are going on at work, something is going on at home. … In my recovery I’ve learned that I need to have that sort of check-in with somebody every other week. If I have to skip that, that adds more stress and frustration.” “I do that [skip visits due to cost] with therapy, all the time. Every couple of weeks I do that. And when I’m in a depressive state – the therapist charges for phone calls, even. So, I’m left on my own and hope that I don’t dip way too far. Because it’s ridiculous to pay $40 for a phone call. … When I was back in school, in a depressive state, and I couldn’t reach out to a therapist, I had to come back to [home state] and undergo ECT, because my depression reached such scary levels. And I had a suicide attempt. So, yeah, definitely.”

3.5. Impacts of specific insurance benefit design features

We were especially interested in understanding how people navi- gated the annual deductible feature in many plans. Some respondents described these matter-of-factly, as part of a yearly rhythm of cost- sharing. However, several reported that the deductible affected their decision to seek care.

“I do see us occasionally, things that are not critical, delaying some of that stuff. And then we are always, once we hit our deductible, which for us has typically been in the fall, scrambling to get everything in November and December if there’s stuff that we need to have done … procedures.” “[Before the deductible] I may choose to go to my family care physician and see if he can – if I’m taking a certain medication for a medical

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Table 3 Strategies that interview respondents described for coping with high costs of care for bipolar disorder, with illustrative quotes

Type of Cost-Coping Strategy (numbered example in right column) Illustrative quotes from interviews

Medication-specific • Drug manufacturer assistance/discount programs (1) • Requesting free drug samples from prescriber • Checking drug formulary on smart phone at moment of prescription (2) • Requesting a less costly medication option from prescriber • Mail order prescription fills • Obtaining only partial fills until money is available • Buying from Canadian pharmacies (4) • Stockpiling medications after deductible is met

1 "For the Vyvanse, I get that one for free because the manufacturer – I’m on their assistance program because the co-pay for that one is so high. The other three I can get at the generic level for my $10 co-pay.”

2 “There is a formulary. I don’t know if he knows, but I definitely bring it up. Like, I’ll check it when he prescribes.”

3 “When they started making generic [Abilify] last year, my insurance required me to take generic. So I did, and then I ended up in the ER because I was allergic to it. So my doctor has to go back and say I have an allergy, and that I have to take brand, and then they have to approve that. ... And then, if I want to say, ‘Well, I shouldn’t be penalized because I have to take a brand outside the formulary,’ then he has to fill out another form that requests a fee reduction.”

4 “She is on 60 milligrams of Abilify a day and the maximum dose is 30 milligrams per day. So we have been challenged by the insurance companies that they would only approve up to 30 milligrams. And so we had to work with our physicians hard, to get an exception approved. ... We had to go to a Canadian pharmacy to get Abilify, because the list price here in the United States was just outrageous, while we were going through all of the appeals process. ... It took about maybe two months to get it cleared up.”

5 “We haven’t tried to see anybody outside of our insurance network because I just know it’s going to be prohibitive.”

6 “His bill was $142 for one follow-up visit. They adjusted it to the managed-care rate, and then I had to pay $65, out-of-pocket and applied to the deductible, whereas my physical health, they allow a copay. ... I believe they’re in violation of the Parity Act ... They have a copay for physician assistants, primary doctors, even specialists, they’ll take $30 copay. But if I see my psychiatrist, I have to pay the managed-care rate toward the deductible. That’s just not right. I don’t think it’s legal. So, I filed a complaint. ... I can afford it, but on behalf of others, unlike me, who don’t have the knowledge and skills and financial ability to deal with this mess, I’m kind of doing a good deed here.”

7 “I’m planning on switching to an HMO in open enrollment in December. Now that I have secured my doctors in network, I will probably switch to an HMO to save money on my plan.” (Had taken PPO plan option from employer during her transition to a new city.)

8 “It came to about $700 that I owed them, and it took me two years to get that straightened out between my insurance company and the hospital and me. Was turned over to collection agencies three times and I owed nothing. And the hospital could not get it corrected in their records that I owed nothing and when I would talk to them and they would look at it, they would say, ‘Oh, yes. I see a coding error here. Someone punched in the wrong code.’ ... And I just couldn’t get it corrected. It just took forever, and it was a terrible struggle.”

9 “I found when I get into those situations, almost the only way to get it resolved is to get on a three-way call with both the provider and the insurance company. Because otherwise they’ll tell you, oh, we did everything right, and then call the insurance company, and they say no, this is wrong.”

10 “We have a lot of outstanding bills from her hospitalization last year that we haven’t been able to cover. We’ve just been kind of letting them ride, because we have these continuing costs for the therapists that we have to pay.”

11 “I dislike that it doesn’t cover everything. I’ve been in the hospital a number of times, and I’ve been left with some pretty large bills afterwards. So, many times I’ve had to apply for charity care – bills that were left over. ... That’s through the hospital.”

12 "It’s five free EAP per person in your family per incident. So, the number of times I’ve seen her were probably 12 a year. … [The experience has been] very good, because I didn’t have to find a new therapist."

13 “There are drop-in centers that are alternatives to ER visits that are free with professionals. Which are really helpful.”

14 “My daughter had been in the hospital at her school, and she had a lot of bills, and it was going to be hard to pay them, and I called, and I was able to get a reduced rate. And I wouldn’t have done that if I hadn’t heard from other individuals that that was something that was possible.”

15 “Luckily for this basket case, I have a really awesome boyfriend with a really great job who has really great insurance plans, so I guess we’re just going to get married, which is really romantic – married for insurance. But that’s kind of my plan. Just from one man to another man.” (Lives with parents, approaching 26)

Navigating insurance coverage • Checking providers’ network status and always staying in-net (5,7) • Assessing options, making plans for emergency care in advance • Requesting exemptions from insurance restrictions (e.g. network-level copayment for

a non-network provider, coverage for a non-formulary drug, access to post-acute programs) (3)

• Asking providers to press for exemptions from insurance rules (4) • Delaying discretionary care until after the deductible or out-of-pocket maximum is met • Filing a complaint about lack of mental health parity (6) Financial management • Rigorous personal budgeting • Using HSAs & FSAs • Spacing specialist visits in different months • Selecting a more generous/flexible PPO plan • Selecting a lower-premium HMO plan (7) • Selecting an employer based on health benefits • Learning provider billing and insurance payment procedures • Rigorous self-advocacy to resolve billing irregularities (8,9) • Prioritizing payment for ongoing care over old medical debt (10) Other strategies • Negotiating discounts from providers (14) • Applying for charitable coverage of care at hospitals (11) • Using public programs (13) • Obtaining free therapy visits through an employee assistance program or EAP (12) • Seeking alternatives to professional therapists, such as peer counseling • Seeking new cost-coping strategies from peers, professionals, and on-line • Moving to an area with more providers • Marrying for insurance (15)

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condition, see if he can extend that for me, ‘til I can get back in to the specialist. I may pause and not go to the specialist right away.”

One woman confronting a high deductible for the first time reported that she had just cut back on therapy and stopped all medications, despite her history of frequent “traumatic … scarring” hospitalizations. Another had gone without therapy for most of the year, but anticipated that a somatic concern which required treatment would soon push her over the deductible threshold, after which she could resume therapy. She also expressed relief that her childbirth the previous year had pushed her past that year’s deductible and allowed extra postpartum visits to her psychiatrist, which she believed prevented a manic episode like the one that followed an earlier childbirth. A man explained that his wife’s high out-of-network deductible meant that psychiatrist visits were always 100% out-of-pocket, because her psychiatrist was her sole non-network provider.

Some individuals discussed employer benefits that helped pay for care, particularly in the deductible phase, such as Health Savings Ac- counts (HSAs, which sometimes included employer contributions) and Flexible Savings Accounts (FSAs). [See Footnote A.] Several individuals volunteered that they liked how pre-paycheck account deposits were not taxed as income, and how paying for care from these accounts did not feel so “out-of-pocket.” However, others eschewed HSAs or FSAs as not worth the hassle of learning and managing them.

"I love [my HSA]. Every month I get almost $250 at the beginning of the month, and it’s met by my employer as well, and I’m able to pay on our medical expenses using that.” “My wife bought her glasses on [her FSA]. We’ll put her copays on it for her therapy visits. … Super easy. It comes on a Visa. I will say this, I do have to keep copious documents in case they go, ‘Hey, can you send us the bill for this?’ “ “We did have an FSA. However, that was only for vision and dental. And it was extremely difficult to get the money out of it. So, I just nixed it"

Some respondents appreciated that, even when paying full cost for services during the deductible phase, they paid reduced rates negotiated by their plans. Those who hit annual out-of-pocket maximums appre- ciated the subsequent free services, though one man complained that his maximum did not apply to medications. Several individuals described Employer Assistance Programs (EAPs) that had helped them with a few free therapy visits each year or to identify a new provider.

3.6. Cost-coping strategies

Respondents reported a wide range of personal strategies for relieving cost pressures (Table 3). Many educated themselves about health insurance and payment systems so they could better navigate to obtain what they valued most. For example, some individuals chose a more generous plan with a higher premium in order to access better providers, whereas others preferred to save on premiums if they could still see an acceptable provider. Respondents learned how to navigate using information furnished by insurance plans (e.g., printed packets, call-in lines, websites), from other internet-based advice such as on DBSA’s website, and from experiences shared in peer support groups. Both peers and providers were helpful in informing them about options such as requesting discounted visit rates, charitable care or installment plans for acute services, and getting exemptions from a plan’s coverage restrictions. Cost-coping strategies often reflect difficult decisions made under pressure; accordingly, there is some overlap between the strate- gies in Table 3 and the adverse consequences of costs in Table 2. For example, skimping on a necessity or making a non-preferred life choice in order to afford care may preserve health, but be detrimental in other respects.

4. Discussion

This study explored health care cost burdens affecting 40 individuals with BD who have employer-based commercial health insurance and how they manage these costs. While employer-sponsored insurance plans can be generous compared to self-purchased plans, (Gabel et al., 2015) we identified substantial problems affording care in our interview sample. Nearly half of respondents reported underusing mental health specialist care due to cost barriers, and several reported recent cost-related underuse of medications. People who underused care described negative consequences for their health, and many individuals reported stress due to cost burden or skimping on other basic needs.

The experiences reported in these interviews are perhaps unsur- prising given the modern US health care landscape, which is charac- terized by bewildering variation in insurance designs and reimbursement arrangements, with growing cost burden on people who require chronic care. Individuals with BD face particular challenges: an illness which is difficult to treat effectively and which can severely interfere with one’s ability to navigate the systems; a mental health specialist shortage; poor integration of behavioral with other health services; and social marginalization. (Geddes and Miklowitz, 2013; Michalak et al., 2007; Kupfer, 2005; Hawke et al., 2013) To our knowledge, there are few published qualitative studies about navigating health care, insurance benefits, and patient costs, and none focused on a population with serious mental illness. (Rasmussen et al., 2001, George et al., 2018; Goins et al., 2005)

Qualitative research is essential for understanding how individuals respond to specific aspects of the health care and insurance landscape. Quantitative studies using insurance claims can measure changing pat- terns of utilization and payment but cannot convey what happens to patients as they navigate care, including the barriers and trade-offs confronted and ripple effects in daily lives. People who live with BD are at especially high risk for poor outcomes, including hospitalization, disability, and death. They recognize the hazards associated with forgone or inadequate care for their condition. However, scarce personal resources and high out-of-pocket costs can force hard choices between obtaining needed care or other life essentials.

Our interviews provided some evidence that individuals living with bipolar illness, while requiring continuous care, generally do not over- use affordable services. Respondents described being glad when they could reduce visits or medications that eventually became unnecessary. They also described the time costs associated with arranging and receiving care as a separate burden representing a disincentive to overutilization.

Based on our interview findings, there are multiple ways that em- ployers and insurers could better address the needs of people with complex conditions like BD. Insurance benefits are challenging to navigate; better materials describing benefits at the point of plan se- lection, or guiding people toward potential cost savings when seeking care, might ease out-of-pocket cost burdens. Patients should be encouraged to discuss out-of-pocket costs and affordability of different services and medications with their providers. (Perez et al., 2019) Customer service and information resources vary widely in user-friendliness; plan members would benefit from assistance by pro- fessional navigators and paid peer counselors. (Natale-Pereira et al., 2011; Parker et al., 2010; Duckworth and Halpern, 2014; Moran et al., 2013) Members need education from their insurers or employers about potentially helpful resources and financial tools (e.g., EAPs, HSAs, FSAs). Employers could offer lower-income employees with complex conditions additional HSA funding or a more generous plan design.

Mental health provider shortages and insurance network inadequacy have emerged as prominent modern barriers to mental health care ac- cess in the US. (Bishop et al., 2014; Bishop et al., 2016; Xu et al., 2019) Complex mental illnesses like BD require specialist care. Prior research has shown that primary care practitioners typically do not treat BD and, when they do, patients are less likely to receive evidence-based

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pharmacotherapy. (Olfson et al., 2014; Kilbourne et al., 2010; Kilbourne et al., 2012) Broadening mental health provider networks would reduce what are often major challenges obtaining care. When networks are short on appropriate specialists willing to accept additional patients, allowing out-of-network providers to be accessed at in-network rates through waivers could greatly reduce disruptions in care.

Some flexibility exists about which services get defined as “preven- tive” and thus potentially exempt from cost-sharing or deductibles; preventive drug lists that include key medications for bipolar illness, or exemptions for regular maintenance visits to psychiatrists, might be wise plan design options allowing patients with BD more affordable access to care. (Beronio et al., 2014; Erb, 2019) Likewise, defining essential psy- chiatric services and medications as “high value” in value-based insur- ance plans (Fendrick, 2006) could reduce patient out-of-pocket costs for these services and incentivize higher use.

Health care needs for people with BD are diverse and evolve over time. Insurance plans that accommodate varied individual needs would be beneficial, such as through tiering exceptions that lower out-of- pocket costs during high-risk periods. High-risk periods might include the early stages of BD when intensive outpatient services are necessary to develop insights and strategies for managing illness, or following acute care episodes, or when prescribers are working through trials of medications for refractory illness.

Public policymakers can use funding and regulatory levers to push for improvements in the above areas. Stronger monitoring and enforcement of compliance with mental health parity laws could bring relief in some settings. (Borkan J. Immersion/crystallization, 2018)

Our study has several limitations. Respondents were volunteers and may not be fully representative of the targeted population – adults with BD and employer-sponsored insurance. Our sample was disproportion- ately female, which we attribute to previously demonstrated (Wharam et al., 2020; Galdas et al., 2005; Wilson, 2012; Sylvia et al., 2018; Madden et al., 2015) greater willingness among women to seek care for behavioral health concerns and to participate in voluntary organiza- tions. We expect that our sample was biased toward those who accept their diagnosis, value treatment, are comfortable discussing their private lives and health, and are well enough to do so. About 15 respondents described working in mental health or another health profession or taking on an advocacy role such as public speaking or leading a peer group; thus, our sample may have been especially well-informed and more capable of navigating care and costs than other patients. Further, because our sample had employer-sponsored insurance, they were likely better-off economically, less disabled by BD, and/or more likely to have family supports than the general population of US adults with BD. For all these reasons, it is plausible that the problems we identified are more severe and widespread in other US settings. For example, people self-purchasing coverage through insurance exchanges, if ineligible for public subsidies, typically face higher deductibles and out-of-pocket maximums; (Gabel et al., 2015) if they have HSAs, their HSAs are self-funded only. It is also well-documented that Medicaid enrollees have difficulty accessing mental health providers due to lower reim- bursement rates. (Burns et al., 2016) We did not systematically collect data on the income, education, jobs, and family roles of individuals in our sample; these factors merit deeper exploration in future research on access to behavioral health care.

Despite these limitations, we collected a broad spectrum of experi- ences. Inclusion of family caregivers diversified these perspectives. Concerns about underrepresentation are partially tempered by an appreciation that unique, information-rich data were attainable through our practical methodological approach. We find our data compelling and internally consistent. For example, respondents clearly indicated prioritizing medications and psychiatrist care and, compared to therapy visits, these were less often forgone due to cost pressures. Hundreds of additional personal stories shared with us through DBSA platforms were fully consistent with our in-depth interviews.

5. Conclusion

Individuals living with BD and caregivers assisting them reported a range of experiences accessing care, coping with high costs, and navi- gating commercial insurance benefits. Despite employing a variety of proactive cost-management strategies, many respondents described underuse of essential care due to high costs or poor provider availability, resulting in increased life stress and threats to well-being. More studies are needed that include the voices of individuals with serious mental illness to illuminate the challenges they face obtaining care and inform future solutions.

6. FOOTNOTE OR ENDNOTE *A* [More on insurance coverage in the US]:

Patients with commercial insurance in the United States typically share the costs for specific services such as medications or health care provider visits. Cost-sharing may take the form of copayments or coin- surance (fixed patient fees and percentage amounts, respectively) whereby the patient/member pays a portion of the total amount the provider is paid for the covered service and the insurance plan pays the rest. A deductible is a predetermined annual amount that a member must pay out-of-pocket before insurance coverage for services subject to that deductible begins. Some plans have no deductible, but others can specify deductibles in the range of several hundred to several thousand dollars per year. Commercial insurance plans vary in which specific types of services are subject to the deductible; specialist care, medical and surgical procedures, hospital and emergency room services, and laboratory tests are commonly targeted; a range of preventive services such as annual primary care visits or immunizations may be exempt from the deductible. Until the annual deductible has been met, services subject to the deductible are paid 100% by the member.

Patients often are required to pay at the time a service is received, but providers may allow patients to pay later. Some providers refuse to submit claims to insurance companies because of the administrative burden, so their patients must pay in full and later submit a claim to their insurance company for reimbursement. Some US employers offer in- surance plans that have associated accounts that allow patients to pay for services with pre-tax dollars. Some employers, especially larger ones, contribute to these accounts to help offset patient cost-sharing. Most commercial plans have an annual "out-of-pocket maximum” amount, protecting high-utilizing patients from catastrophic costs; after paying that specified dollar amount in a single year, patients pay no further cost-sharing for covered services in that year.

An Employee Assistance Program (EAP) is a benefit offered by some employers outside of health insurance. EAPs are meant to assist em- ployees with confidential personal problems (e.g., behavioral health issues, care for dependents, relationship or legal problems), usually free of charge. Employees typically contact their EAP (an outside vendor organization) using a telephone hotline and the EAP may connect them to other outside services.

Most nonelderly US adults have health insurance through their employer; monthly plan premiums are usually paid by a combination of employer and member pre-tax contributions. A plan that covers family members is more costly than one that covers an individual employee. Subsidized public health insurance plans (e.g., Medicare, Medicaid, Children’s Health Insurance Plan, Veterans Administration) are avail- able for select groups such as the elderly, disabled, very low income, children, or military veterans. Some individuals self-purchase a com- mercial health insurance plan. Starting in 2014, US federal law estab- lished on-line “marketplace exchanges” to facilitate self-purchase of commercial insurance coverage, with standards for plan adequacy and new government subsidies that reduce premiums and cost-sharing for lower-income people. (Tikkanen et al., 2020)

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Contributors

Dr. Madden designed the protocol for this qualitative study and designed the stakeholder engagement components of the parent grant. She led the parent grant submission to PCORI. She led this qualitative study, was its primary analyst, and fully drafted the manuscript including the literature review. Ms. Araujo-Lane screened and consented our interview respondents, conducted the interviews, and was a primary co-analyst of the study. Ms. Foxworth was a major contributor to the protocol for this study and led recruitment of interview respondents. She was essential to interpretation of results and co-led our supportive pa- tient engagement activities. Dr. Lu was co-PI on the parent grant and a co-investigator on this qualitative study contributing toward all activ- ities, in particular acquisition of funding and interpretation of results. Dr. Wharam was co-PI on the parent grant and a co-investigator on this qualitative study contributing toward all activities, in particular acqui- sition of funding and interpretation of results. Dr. Busch was a co- investigator on this qualitative study contributing toward all activities, in particular in her capacity as a psychiatrist researcher and in the interpretation of our findings. Dr. Soumerai was a co-investigator on this qualitative study contributing toward in all activities, especially inter- pretation of findings. Dr. Ross-Degnan was a co-investigator on this qualitative study contributing toward in all activities, in particular protocol development using his expertise in research design and quali- tative methodologies.

Data statement

Authors elect to not share the confidential interview transcripts.

Declaration of Conflict Interest

The authors all declare that they have no conflicts of interest.

Acknowledgements

We thank the members of our Stakeholder Advisory Panel (Kimberly Allen, MS, LCDC, PRS, CPSS, Gregory E. Simon, MD, MPH, Francisca Azocar, PhD, Denise D’Aunno, MBA, Kenneth Dolan-Del Vecchio, MSW, Kristin A. Olbertson, JD, PhD, Ken Duckworth, MD, and James Sabin, MD) for their continuous engagement with and support for this study. We thank many hundreds of members of the DBSA on-line and advocacy community who contributed additional experiences and perspectives about accessing mental health care. Francesca Napolitano, PharmD, contributed analyses of interview data specific to medications and comorbidities, while quantitative study team members (Fang Zhang, PhD, Robert LeCates, MA, and Xin Xu, MS, of HPHCI/HMS) provided insights and corroborating analyses of utilization and costs from other settings. This research was funded through a Patient-Centered Outcomes Research Institute (PCORI) Award (HIS-1408–20393). The statements in this publication are solely the responsibility of the authors and do not necessarily represent the views of PCORI, its Board of Governors, or its Methodology Committee.

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