Today’s health insurance system is far from perfect. Although Medicaid, Medicare, state exchanges, and employer-based health plans generally meet most individuals’ needs, unfortunately, approximately 31 million Americans find themselves underinsured.

 Many of these individuals live with life-threatening, chronic, and rare diseases, and struggle with access and affordability issues because of limited networks, restricted formularies, and high out-of-pocket costs.

For those who are underinsured, independent charitable foundations, such as the Patient Access Network (PAN) Foundation, provide an important safety net by paying for a portion of their out-of-pocket costs. The need for such assistance has significantly grown over the past few years. In fact, over the past 2 years, with the generous support of our donors, the PAN Foundation has provided over $1.7 billion in charitable assistance to nearly half-a-million seriously ill patients.

Much of the assistance provided by the PAN Foundation has benefited Medicare beneficiaries. Today, approximately 16 million, or 40%, of Medicare Part D beneficiaries fall between 150% and 400% of federal poverty level, so their incomes are too high to qualify for the Low-Income Subsidy, and many cannot afford their critical medications without some form of assistance. The need for the safety net will continue to grow given the increasing number of Medicare beneficiaries; the likelihood of cutbacks in health insurance coverage under the Affordable Care Act (ACA), which affect individuals of all ages; possible cutbacks in Medicare and Medicaid; and the upward trend in the cost of treatment.

With the concern for the safety net as a backdrop, the PAN Foundation is pleased to have continued our partnership with 

) for the second year in a row, and to have together sponsored the 2017 PAN Challenge. The PAN Challenge included a call for papers (summer 2016) titled, “Beyond Charitable Assistance: Sustainable Strategies for Providing Access to Critical Medications.” The national competition solicited papers that propose ways to reduce or eliminate barriers and disparities that Medicare and ACA enrollees face in obtaining medications to treat life-threatening, chronic, and rare diseases. The 2 winning papers of the PAN Challenge are featured in this supplement and we are also happy to include 2 case studies on the topic of innovative programs to mitigate financial toxicity for patients. We hope that these papers and case studies will continue to stimulate a dialog about how to ease the financial burden and improve the quality of life for millions of patients and their families.

1. Collins SR, Rasmussen PW, Beutel S, Doty MM. The problem of underinsurance and how rising deductibles will make it worse—findings from the Commonwealth Fund Biennial Health Insurance Survey, 2014. Commonwealth Fund website. http://www.commonwealthfund. org/publications/issue-briefs/2015/may/problemof-underinsurance. Published May 20, 2015. Accessed February 2017.

Articles

INTRODUCTION

This supplement showcases the winning papers and case studies from the PAN Challenge, which aimed to stimulate a dialogue on ways to reduce or eliminate the barriers and disparities that Medicare and ACA enrollees face in obtaining medications to treat life-threatening, chronic, and rare diseases.

The Increasing Need for the Safety Net: An Introduction to the Patient Access Network Foundation and AJMC® Collaborative Supplement

To identify how peer-to-peer support programs empower patients by improving health literacy and providing education on important patient issues, including increasing access and reducing barriers to life-saving medications and how these programs improve patient outcomes.

A review of current literature, identification of gaps in research, and case studies.

An analysis of data collected from the cluster sample and a review of secondary data from patient case studies were used to create a theoretical framework of community-based, peer support services. The research examines how peer-to-peer support services empower and educate patients to improve access and adherence to critical medications. Mended Hearts is made up of such peer support groups, comprising heart patients and caregivers; it studies patient populations in addition to piloting new programs.

Patients who receive peer-to-peer support services are more empowered and educated, and as a result, are able to make better healthcare choices and access resources that reduce many of the barriers that Affordable Care Act exchange and Medicaid participants face.

 Peer-to-peer support and education models reduce barriers to accessing medications and improve medication adherence, which subsequently improve patient outcomes.

Am J Manag Care. 2017;23(3 Suppl):S54-S57

According to CMS, in 2016, 72.8 million Americans had health coverage through state Medicaid programs

; another 20 million Americans were covered by the Affordable Care Act (ACA) exchange programs. Not only do these Americans face specific barriers to accessing healthcare, but in many cases, they also lack access to external resources and social supports. Medication adherence is a problem that plagues many of the nation’s most vulnerable, and with 90 million-plus Americans falling under these programs, the social and economic costs are staggering. Individuals who are prescribed self-administered medications typically take only about half their prescribed doses; thus, efforts to assist those patients with adherence to medications might improve the benefits of prescribed medications.

 Understanding how a community-based approach could improve medication adherence through peer-to-peer support could establish a system of support for all Americans that would benefit the overall outcomes and reduce morbidity and mortality without burdening the healthcare industry with high-cost programs.

Peer-to-peer support is vital to improving the lives of individuals across multiple social platforms. These social platforms can take shape in hospitals, through local chapter support groups, or with community events, advocacy events, or online support groups. The most commonly recognized peer-to-peer support organization, Alcoholics Anonymous, uses an individualized “been there, done that” theory of support to help individuals recover from addiction.

 How exactly peer-to-peer support works has not been effectively studied to date, but it is generally understood that social influence seems to be the key. As an individual is attempting to make a lifestyle change (eg, weight loss, addiction, recovery from a medical event, medication adherence), surrounding himself or herself with others who encourage and support new and positive behavior may improve long-term outcomes of success.

, keys to social habits and why they are important. According to Duhigg, a movement starts because of the social habits of friendships and strong ties to close acquaintances; it grows through the habits of the community, and it endures because individuals give each other new habits that create a fresh sense of identity and a feeling of ownership over their well-being.

 In personal health, individuals must be educated, empowered, and supported to make changes in their own care, and they should also feel they have some semblance of control. However, these habits are difficult for the healthcare industry to ingrain in such a fast-paced, impersonal world, as clinicians are often overwhelmed with caring for the complex medical needs of patients, which leaves them little time to provide personal support.

Social support systems are more likely to produce the social networks that can encourage an individual to adhere to treatment and make positive lifestyle changes, and provide additional resources for services for patients. This is where peer-to-peer support enters into the healthcare equation: peer supporters can be the social system that patients need to become educated on the importance of medication adherence and to provide encouragement for lifestyle changes that will impact their healthcare outcomes. It is easy to tell someone what they should do, but providing real-life answers to the question “How?” is where the social support especially comes into play. Establishing these important community support groups in local areas to work with clinicians to support patients could change outcomes. Building those positive social structures within communities is vital to empowering patients—an empowered patient is more engaged in their healthcare and more likely to make the right healthcare decisions.

Mended Hearts, a peer-to-peer support organization for cardiovascular patients has been providing this support for 65 years. The ability to educate and empower patients and caregivers is the cornerstone of the success of the community-based chapters. In a landmark study completed in 2014, hospitals with a Mended Hearts visiting (peer-to-peer support) program were significantly more likely to have fewer readmission rates for heart failure than a hospital without, based on national averages.

 The results of this study showed that peer-to-peer support gives patients the ability to feel in control of their situation. Involving them in social support systems can encourage lifestyle changes and health benefits. Emotional health is an important part of this process, and the ability to support patients from a peer perspective is the cornerstone to success.

When discussing the barriers to medication adherence, it is important to examine the social and community programs that could be accessed. These programs could enhance the care that is provided to patients from the medical community while focusing on patient satisfaction and the quality of care they receive. The cost of the programs would be relatively low for the healthcare industry, yet incredibly effective in reducing the overall cost burden on the healthcare system.

Causes of medication nonadherence are multifaceted with no clear answers. Some successful interventions are reportedly complex and unlikely to be implementable in routine clinical settings.

 Therefore, looking outside of the clinical setting to community based programs, such as peer-to-peer support services, is a first step in a new generation of healthcare management.

It is well documented that peer support programs are effective in the areas of mental health, addiction recovery, and weight loss. Developing evidence-based programs for support to enhance the healthcare system is a viable option, and the research shows this to be correct. What is noted throughout the review is that peer support programs need to be developed within communities, with specific guidance, oversight, and training to be successful. Guidelines and program development must be structured.

In 2006, the California Healthcare Foundation released models for successful peer support integration within the healthcare community; these case studies provide an in-depth look at how peer led interventions are successful. Using peer-led self-management programs, patients can learn about problem-solving skills, treatment adherence, and the health system.

Peers who are living with chronic conditions and have been trained can execute support group meetings, provide 1-on-1 support, and develop communitystrengthening activities that improve outcomes.

Heisler studied 1 program—Project Dulce&mdash;that provided a peer support program in San Diego, California, for Latino patients living with diabetes. The program participants showed significantly improved outcomes compared with those who were not engaged in the support program. More impressively, a 100% adherence to the American Diabetes Association guidelines for follow-ups and testing was documented.

 This is significant to the theoretical platform that peer support improves adherence and self-managed care.

In 2011, the National Institutes of Health (NIH) conducted a systematic review of barriers to medication adherence in the elderly population. Throughout the study, it came to light that very little was known about the nonfinancial barriers to adherence; common patient-related factors found to be associated with adherence included sociodemographic factors, the psycho-social profile, comorbidities, cognitive ability, and health beliefs.

 Health literacy also plays a role in this equation. If patients are unaware of the importance of the medication or lack basic disease education, they will be less likely to adhere to the treatment.

The patient—prescriber relationship and lack of social support were also noted within the NIH review as causes for nonadherence. One study within the review focused on medication adherence in the elderly population and reported factors outside of cost to be notable. It was reported, through a telephone survey of 202 individuals, that patients with hypertension who gave lower priority to discussing their hypertension with their physician were significantly more likely to be nonadherent to their blood pressure medication.

 Building relationships with providers and social support systems would likely improve adherence to the treatments prescribed.

Another review of evidence shows that there are 3 basic contributions of peer support that seem to be unique to, or at least especially well-suited for, peer staff: 1) instillation of hope through positive self-disclosure, 2) role modeling to include self-care of one’s illness, and 3) the nature of the relationship between peer provider and recipient, which is thought to be essential for the first 2 components to be effective.

 It is well noted that an individual who can speak from personal experience can be powerful in providing this hope. Peer support organizations within the local community can do this effectively.

A small pilot study with stroke survivors who received peer support was completed in 2013. Although further research is needed to determine the preferred format and timing of peer support, the study showed that this type of support can potentially enhance the experience for both the survivor and the peer supporter. One key finding from the research was that information received from a peer regarding the experience of living with the effects of a stroke was generally regarded with more significance than that received from a healthcare professional.

 With the notion that patients value peer perspective and guidance, community-based peer support programs for medication adherence would be beneficial to the overall patient experience.

Another study looked at targeted training in illness management (TTIM) to improve outcomes for patients with mental illness and diabetes. Peer support was shown to be an important route to empowerment that improves health and is a particularly successful method for disseminating patient-level self-care innovations to those with costly chronic diseases.

 Peers with chronic health conditions have access to lay expertise that is typically inaccessible to healthcare providers; therefore, peers are perfectly poised to provide guidance toward self-empowerment.

Throughout the weeks and months of the TTIM study, the group became very cohesive and members began to regard each other as “almost like family.” This is an important feature of the peer support system: having the ability to receive support and feel empowered can be a life-changing experience to individuals who are facing chronic disease. It is important patients want to adhere to the treatments, however. Once the patient desires adherence, the other steps will be easier to accomplish.

At Memorial Healthcare System in Hollywood, Florida, Memorial Regional Hospital has implemented an intensive patient education program at their Cardiac and Vascular Institute that includes a discharge class that all cardiac patients must go through before being discharged from the hospital. Mended Hearts is a part of this educational program. Within this 2-hour program—offered in English and Spanish, with other translators available if needed&mdash;the patient learns from a pharmacist, a nutritionist, and a cardiac rehab specialist about the important parts of their recovery plan.

The patient also learns from a peer supporter who discusses topics like depression, the art of positive thinking, and the importance of taking care of themselves and adhering to the treatments and medications they are prescribed. The patient is sent home with a lot of information, including practical tools, such as a medication card (and extra copies) to fill in about their medications and when to take them.

The Mended Hearts peer supporter follows up with the patients, provides 1-on-1 support, and invites them to meetings and other community events to keep them involved. These steps have helped the hospital to be in the top 1% of cardiac care in the nation and receive a 3-star rating from the Society of Thoracic Surgeons. Scoring above average in all areas of patient satisfaction is also something that Memorial Healthcare System has achieved; in areas like access to care, follow-up care, and communication, the hospital performs higher than the state average in all areas.

With Broward County being home to a high rate of underserved patients, it is important that this hospital takes the time to provide such outstanding patient education and support throughout their hospital stay and beyond. Embracing the total heart and total healthcare of the patient is working well in this hospital.

CaroMont Regional Medical Center in Gastonia, North Carolina, much like Memorial Regional Hospital, is a top-ranking cardiac care hospital system. 

ranks the hospital as "above average" in areas such as survival and patient services.

 An additional similarity to Memorial Regional Hospital is that CaroMont also has a strong peer support network with a Mended Hearts chapter. At this hospital, Mended Hearts has over 60 peer supporters who provide in-patient visits to patients who are recovering from cardiac events. Providing education and support to patients is so important to CaroMont that their hospital system sought out Mended Hearts and helped to get the chapter running in the hospital. Understanding that support systems are critical to their patients’ success, CaroMont provides support to the Mended Hearts chapter with in-kind services that include meeting room space, newsletter distribution, and meals for meetings.

These small things can make a big difference in the success of the local support group chapter. The chapter spreads awareness through a monthly newsletter that includes a heart-healthy recipe, a heart patient story, visiting (peer-to-peer support) reports, chapter events, and ways to get involved.

The newsletter is distributed to each floor of the hospital and at each CaroMont facility in Gaston County.

The research shows that peer support that focuses on education and empowerment through a structured system is vital to improved outcomes in chronic disease management. With community-based programs that work closely with healthcare teams, medication adherence can be addressed in a cost-effective way. Disease-specific nonprofit organizations can be funded to execute their programs to provide peer support in a variety of settings in the community.

Support meetings and functions, 1-on-1 meetings and visits, social events, educational materials, and other support programs can be operated in the community at a fraction of the cost of healthcare professionals. Although the costs will vary depending on the community, the overriding costs can be absorbed by simple “in-kind” donations from health systems. Such items can include use of meeting space, free parking for volunteers, food and beverage for meetings and events, printing and mailing of organizational materials, and educational speakers. In return, health systems could see a reduction in readmission rates, lower healthcare costs across the spectrum, and adherence to treatments that will improve the health of the community. The cost of the programs is a minimal cost to the healthcare system and could enhance the ability of patients to truly be empowered to adhere to the treatments they prescribed.

There is a gap in notable research in medication adherence and peer-to-peer support programs, and patient reported outcomes are difficult to quantify. Creating a multicenter pilot program to follow patients over the course of a 12- to 18-month period to compare with patients who do not receive peer support services would be a valuable undertaking. In designing this study, one would need to work within that same hospital system and compare subgroups of patients within the same system to assure that the variables of care provided are controlled through the study.

For healthcare to truly be patient centered and to address the barriers of patient care that currently plague the healthcare system currently, peer support and personal empowerment of the patient are keys to success. When managing chronic disease, the socioemotional toll can be devastating on patients and their caregivers. Providing support and educational resources can provide patients with the ability to make better healthcare choices and become more adherent to treatment plans and can improve their overall emotional and physical health.

When patients are empowered and supported, barriers can be removed with critical thinking skills, lifestyle changes, and social services programs within the community. However, the first area to address must be the patient’s emotional health. Once their emotional health is cared for, patients can focus their energy on the desire to become healthy and adherent.

Reducing barriers and improving medication adherence can be done with a low-cost community strategy that focuses on patient support, education, and empowerment. These programs can help to improve the quality of the patient experience, reduce hospital readmission rates, and reduce overall healthcare costs. Investing in peer support programs in local communities could have a positive, long-term effect on the health of patients.

 Mended Hearts, Inc (AB, MB), Dallas, TX.

The authors report no relationship or financial interest with any entity that would pose a conflict of interest with the subject matter of this article.

Concept and design (AB, MB); acquisition of data (AB); analysis and interpretation of data (AB); drafting of the manuscript (AB, MB); critical revision of the manuscript for important intellectual content (AB. MB); provision of patients or study materials (AB); obtaining funding (AB, MB); administrative, technical, or logistic support (AB).

Andrea Baer, MS, Mended Hearts, Inc, 8150 N Central Expressway, M#2248, Dallas, TX, 75206. E-mail: andrea.baer@mendedhearts.org. Marcia Baker, MS Ed, Mended Hearts, Inc, 8150 N Central Expressway, M#2248, Dallas, TX 75206. E-mail: marcia.baker@mendedhearts.org.

1. Rudowitz R, Valentine A, Smith V. Medicaid enrollment & spending growth: FY 2016 & 2017. Kaiser Family Foundation website. http://kff.org/report-section/medicaid-enrollment-spending-growth-fy-2016-2017-issuebrief- 8931/. Published October 13, 2016. Accessed December 12, 2016.

2. Nieuwlaat R, Wilczynski N, Navarro T, et al. Interventions for enhancing medication adherence. 

. 2014;(11):CD000011. doi: 10.1002/14651858.CD000011.pub4.

3. McGreevey S. What makes AA work? new study points to social contacts as crucial to successful recovery. 

 website. http://news.harvard.edu/gazette/story/2011/09/what-makes-aa-work/. Published September 12, 2011. Accessed December 1, 2016.

The Power of Habit: Why We Do What We Do in Life and Business

5. Quantifying the value of peer-to-peer support: landmark survey results. Mended Hearts website. http://www. mendedhearts.org/Docs/2%20-%20QtV%20Fact%20Sheet.pdf. Published 2015. Accessed December 1, 2016.

. 2016;25(10):736-738. doi: 10.1136/bmjqs-2015-004886.

7. Heisler M. Building peer support programs to manage chronic disease: seven models for success. California Healthcare Foundation website. http://www.chcf.org/publications/2006/12/building-peer-support-programs-tomanage-chronic-disease-seven-models-for-success. Published December 2006. Accessed December 9, 2016.

CASE STUDY

How peer-to-peer, community support programs can educate and empower patients to become more adherent to treatments, which will improve outcomes and reduce healthcare costs.

Reducing Barriers to Medication Access and Adherence for ACA and Medicaid Participants: A Peer-to-Peer, Community-Based Approach

 Value-based insurance design has been suggested as an effective approach to ensure access to highvalue medications in health insurance markets. Premera Blue Cross, a large regional health plan, implemented a value-based formulary (VBF) for pharmaceuticals in 2010 that explicitly used cost-effectiveness analysis to inform medication co-payments. This study assesses the impact of a VBF on adherence and patient and health plan expenditures on 3 chronic disease states: diabetes, hypertension, and hyperlipidemia.

 Interrupted time series design of employer-sponsored plans from 2006 to 2013. Beneficiaries exposed to the VBF formed the intervention group, and beneficiaries in similar plans without any changes in pharmacy benefits formed the control group.

We measured medication expenditures from member, health plan, and member-plus-health plan (overall) perspectives and medication adherence as proportion of days covered. We conducted an exploratory analysis of medication utilization classifying medications according to whether co-payments moved up or down in the year following VBF implementation.

For the diabetes cohort, there was a statistically significant reduction in member and overall expenditures of $5 per member per month (PMPM) and $9 PMPM, respectively. For the hypertension cohort, there was a statistically significant reduction in member expenditures of $4 PMPM and an increase in health plan expenditures of $3 PMPM. There were no statistically significant effects on hyperlipidemia cohort expenditures or on medication adherence in any of the 3 disease cohorts. Exploratory analyses suggest that patients in the diabetes and hyperlipidemia cohorts were switching to higher-value medications.

 A VBF can ensure access to high-value medications while maintaining affordability.

Am J Manag Care. 2017;23(3 Suppl):S46-S53

A value-based formulary (VBF) estimates the value of individual medications and aligns medication co-payments with value. We evaluated the impact of a formulary on adherence and patient and health plan expenditures in 3 chronic disease states: diabetes, hypertension, and hyperlipidemia. 

For the diabetes cohort, member and overall expenditures decreased.

For the hypertension cohort, there was a cost shift from member to plan. 

There were no statistically significant effects on hyperlipidemia cohort expenditures or on medication adherence in any of the 3 disease cohorts. 

A VBF can ensure access to high-value medications while maintaining affordability.

Rising prescription drug expenditures in recent years have prompted healthcare payers to look for ways to achieve greater value in pharmaceutical care. Some proposed solutions have included the adoption of frameworks for assessing value,

 varying payments to manufacturers based on the effectiveness of a drug according to each clinical indication (indication-specific pricing),

 and aligning medication utilization with value through cost-sharing redesign.

 This last policy, known as value-based insurance design (VBID), advocates for the redesign of cost sharing such that patient out-of-pocket expense aligns with the value—both health benefit and cost&mdash;of an intervention rather than solely on the cost of the intervention.

Recently, there has been federal interest in the exploration of the effects of VBID for patients with particular chronic conditions.

 Beginning in January 2017, the Center for Medicare & Medicaid Innovation (CMMI) began granting Medicare Advantage plans in 7 states the ability to pilot VBID for enrollees with at least 1 of 7 chronic conditions, including diabetes, hypertension, and certain cardiovascular diseases. One of the approaches permitted by CMMI for these pilot programs is the reduction of cost sharing for high-value services, including pharmaceuticals. In 2018, this pilot program will expand to 3 additional states and 2 additional chronic conditions

; there also is current Congressional discussion to expand the pilot to all states.

According to CMMI, the goals of these pilot programs are to improve health outcomes and attain healthcare cost savings or cost neutrality. Specifically, applicants are required to actuarially demonstrate “net savings to Medicare and no net cost increases to enrollees over the course of the model test.”

 However, findings from previous trials of VBID implemented among patients with chronic diseases suggest that co-payment reductions alone may not necessarily reduce plan costs. The Post-Myocardial Infarction Free Rx Event and Economic Evaluation trial was a randomized trial to solely test the effect of targeted medication co-payment reduction on expenditures.

This study randomized health plans to offer co-payment waivers for certain cardiovascular medications for patients who had been discharged from a hospital with a diagnosis of a myocardial infarction. The study found that although adherence improved moderately (4%-6%) and there were improvements in certain secondary cardiovascular health outcomes, plan medication expenditure increased significantly while plan nonmedication health expenditures were not significantly reduced. The results of other observational studies also show that co-payment reduction alone improves adherence (by 1.5%-9.4%) but increases health plan medication expenditures and has no significant effect on health plan nonmedication expenditures.

A value-based formulary (VBF) is a fuller realization of VBID that incorporates both increases in co-payments for some drugs and decreases in co-payments for other drugs according to value estimates generated by cost-effectiveness analyses. Drugs that have higher estimated value are placed in lower co-payment tiers to incentivize use, and drugs that have lower estimated value are placed in higher co-payment tiers to disincentivize use. In 2010, Premera Blue Cross, the largest private health plan in Washington state, implemented a VBF for their employees and dependents. Details regarding the design and implementation of the VBF have been reported previously.

 A 3-year analysis of the impact of the Premera VBF has shown that the VBF is able to shift plan members toward higher-value drugs and decrease health plan and total (health plan plus member) medication expenditures while not having any measurable adverse effects on hospitalizations, emergency department visits, or nonmedication expenditures.

 Given the interest in value-based approaches among patients with chronic diseases, we evaluated the 3-year effects of the VBF on medication adherence and expenditures among individuals with diabetes, hypertension, or hyperlipidemia.

The study population comprised employees and dependents aged 0 to 64 years who were covered under employer-sponsored preferred provider organization plans administrated by Premera Blue Cross. The intervention group consisted of employees and dependents of Premera in a plan that implemented the VBF on July 1, 2010. The control group included employees and dependents of 5 employersponsored plans administered by Premera that did not have any changes in pharmacy benefits over the entire study period. These plans were chosen based on similarity to the intervention group prior to VBF implementation in industry classification, member geography of residence, and medication co-payment tiers.

The analysis was performed at the individual-member level. For each member in our sample, we obtained monthly measures on demographics (age, sex, zip code of residence, relationship to employee), prescriptions fills (National Drug Code, generic code number, number of days’ supply, date dispensed, place of purchase [retail or mail order pharmacy]), expenditures (amount paid by member, amount paid by health plan), and plan characteristics (benefit renewal month and medical benefit relativity value). The medical benefit relativity value is an index of medical benefit generosity commonly used in health insurance actuarial analyses that takes into account a large number of plan cost-sharing and utilization characteristics (eg, deductibles, co-payments, co-insurance, out-of-pocket maximums, prior authorization, quantity limits).

 The values range between 0 and 1; a value of 0.75 indicates that a health plan pays 75% of medical expenses and the member pays the remaining 25% for a typical market basket of healthcare interventions.

Because the VBF benefit change was implemented across the entire population of members, we aimed to assess the effect of the VBF on this population by constructing prevalent disease cohorts. For these cohorts, individuals were not required to have been given a new diagnosis or to be newly initiating a drug of interest to be included. We identified disease cohorts using 

International Classification of Diseases, Ninth Revision, Clinical Modification

 diagnosis codes (diabetes mellitus: 250.xx; hypertensive disease: 401. xx-404.xx; disorders of lipoid metabolism: 272.xx).

Patients were included in the analysis if they had a diagnosis of interest in the 4-year period prior to VBF implementation and if they had filled a retail or mail order drug of interest based on the American Hospital Formulary Service system of therapeutic classification—the most widely used drug classification system in the United States and Canada.

 The drugs of interest for the diabetes cohort were oral antidiabetic agents: alpha-glucosidase inhibitors (68:20.02), biguanides (68:20.04), dipeptidyl peptidase IV inhibitors (68:20.05), meglitinides (68:20.16), sodium-glucose cotransporter 2 inhibitors (68:20.18), sulfonylureas (68:20.20),thiazolidinediones (68:20.28). Nonoral antidiabetic agents, such as insulins, were not included in the analysis because there is no valid approach to measuring adherence of the nonoral agents using claims data. The drugs of interest for the hypertension cohort were oral antihypertensive agents: central alpha-agonists (24:08.16), beta-adrenergic blocking agents (24:24), calcium-channel blocking agents (24:28), renin-angiotensin-aldosterone system inhibitors (24:32), loop diuretics (40:28.08), potassium-sparing diuretics (40:28.16), thiazide diuretics (40:28.20), and thiazide-like diuretics (40:28.24). The drugs of interest for the hyperlipidemia cohort were antilipemic agents (24:06:xx). The first claim for a drug of interest was considered a patient’s index date, and both adherence and expenditure were measured beginning from this date. Patients were followed until they lost insurance eligibility or the study period ended.

We measured medication adherence using the proportion of days covered (PDC) metric for each of the 3 disease cohorts.

 The PDC is defined as the proportion of days that a given cohort member in a given month had at least 1 disease cohort—specific drug of interest based on the initial prescription fill date(s) and the days’ supply.

 Specifically, the denominator was calculated as the sum of days from the index date or first day of the month (whichever occurs last) to the last day of the month or date of disenrollment from the plan (whichever occurs first). The PDC numerator was calculated as the sum of the days that a member had at least 1 disease cohort—specific drug of interest during the period defined in the denominator. This results in a continuous PDC measure between 0 and 1.

Consistent with standard PDC calculations, in the case of early refills, we assumed that the prior supply was taken fully before the new supply was initiated.

 Hence, the new supply is added to the prior supply in the calculation of the numerator, allowing for a “carryover” in the calculation. Drug supply extending beyond the end of 1 month was added to the drug supply for the following month. Drug supply extending beyond the end of the study period was truncated at the end of the study period such that the maximum PDC is 1. For expenditures, we measured member, health plan, and overall medication expenditures for the disease cohort—specific drugs of interest per member per month (PMPM).

Because we aimed to estimate the average effect of the VBF among those subject to the VBF policy, we sought to compare the observed outcomes among VBF members with the expected outcomes for the same group of VBF members had the VBF not been implemented. We obtained the expected estimate by using the contemporaneous observed outcomes in the 5 control plans that were not exposed to the VBF, after adjusting for the covariate distributions in both the groups. We confirmed the similarity of the control group to the intervention group in pre-VBF outcomes trends by examining both the statistical significance and magnitude of the regression coefficients that represented the differential trends in the groups prior to VBF implementation.

We generated expected outcomes by using generalized linear models. To model PDC, we used a binomial distribution with logit link with iterated, reweighted least-squares optimization of the deviance. To model medication expenditures, we used 2-part models. We first used binomial distribution and logit link to model the probability of incurring expenditures and gamma distribution with log link to model expenditures among those who have incurred expenditures. We assessed overall model fit by using the following goodness-of-fit tests: Pearson’s correlation test, Pregibon link test, and a modified Hosmer-Lemeshow test.

 We modeled correlations between monthly observations within members using robust variance estimators.

 We generated standard errors and confidence intervals for all estimates using 1000 bootstrap replications.

We adjusted for individual-level characteristics (sex, age), zip code—level characteristics (bachelor’s degree, household income, urban residence, African American race, Washington state residence), plan-level characteristics (medical benefits relativity value, benefit renewal month), fixed effects for calendar months (January to December), and study period (early pre-VBF period, late pre-VBF period, and post-VBF period).

 Because observation begins from the index date and adherence likely decreases from the time since that date, we also included an indicator of time since index date in our PDC models to control for potential differences in the start of therapy between the intervention and control groups.

All analyses were done with Stata version 13.1 (StataCorp, College Station, Texas). Estimates with 

 values less than .05 were considered statistically significant. This study was approved by the institutional review board at the University of Washington and the Premera data privacy board.

We utilized an interrupted time series design, with the interruption coinciding with the policy implementation date occurring on July 1, 2010. This design utilizes characteristics and outcomes of the intervention group in the pre-policy periods and the characteristics and outcomes of the control group in the pre-policy and postpolicy periods to control for confounding.

 We divided our analysis into 3 periods: 3 years before to 1 year before VBF implementation (early pre-VBF period: July 2006 to June 2009), 1 year before VBF implementation (late pre-VBF period: July 2009 to June 2010), and immediately after VBF implementation to 3 years after (post-VBF period: July 2010 to June 2013). This equals 84 months of observation. We conducted additional sensitivity analyses that excluded 1, 3, and 6 months immediately prior to and after VBF implementation to assess potential anticipatory or delayed filling of medications.

In the first month of the late pre-VBF period (July 2009), the intervention group had an increase of $5 in the pharmacy co-payment for 2 co-payment tiers. The pharmacy benefits in the intervention group are described in detail in eAppendix Tables A and B [

]. In contrast, there were no changes in the pharmacy benefits for the control group over the entire period. We controlled for all benefit changes other than the implementation of the VBF policy in our statistical analyses.

Exploratory Analyses: Association of the VBF and Medication Utilization by Change in Co-Payment Tier 

Because the VBF is expected to increase utilization of drugs moved into lower co-payment tiers and decrease utilization of drugs moved into higher co-payment tiers, we separately describe the association of the VBF with the days’ supply (PMPM) of medications moved into lower co-payment tiers, higher co-payment tiers, or no change in tier in the VBF. We limited these exploratory analyses to observations 1 year before and after VBF implementation to reduce potential tier misclassification. Occasionally, drugs may be reassigned to co-payment tiers on a quarterly basis after VBF implementation to reflect updated cost-effectiveness estimates. Over a longer duration, this may result in misclassification if medications are initially labeled as “no change” in co-payment tier when the drug was later moved into a lower co-payment tier.

We calculated the mean days’ supply PMPM in the intervention and control groups in the pre- and postpolicy periods by taking the sum of the days’ supply and dividing by the number of personmonths of observation in the respective groups and periods. The association between the VBF and these medication utilization measures was calculated as the difference between the mean days’ supply PMPM comparing the pre- and postpolicy periods for the intervention and control groups separately and then the difference between these pre-/post differences comparing the intervention and control groups.

The intervention and control groups included 230 (8634 membermonths) and 660 members (23,330 member-months), respectively, for the diabetes cohort; 844 (36,315 member-months) and 2592 members (104,139 member-months), respectively, for the hypertension cohort; and 606 (19,485 member-months) and 2269 members (71,015 member-months), respectively, for the hyperlipidemia cohort. Individuals in the intervention cohorts were, on average, younger and resided in zip codes with higher median household incomes (

). As specified a priori, we adjusted for these and other demographic and socioeconomic characteristics. Rates of enrollment or attrition (results not shown) did not differ between VBF and control groups in the pre- and postpolicy periods.

Changes in Mean Co-Payments Due to the VBF

The VBF reduced mean co-payments for antidiabetic and antihypertensive medications by $5 (standard deviation [SD] = $8) and $6 (SD = $8), respectively, and increased mean co-payments for antihyperlipidemic medications by $6 (SD = $21), comparing the year before and after VBF implementation (eAppendix Tables C-E). Antidiabetic medications were either moved into lower co-payment tiers or had no changes in co-payment tier. Antihypertensive and antihyperlipidemic medications were moved up or down or had no change in co-payment tier.

Changes in Medication Adherence and Expenditures After Adjusting for Secular Trends 

The VBF policy had no statistically significant impact on adherence in any of the 3 disease cohorts (

). Comparing the observed expenditures in the intervention group with the expected expenditures in this group had the VBF policy not been implemented, we found that for the diabetes cohort, member expenditures decreased significantly by $5 PMPM (63%; 

 <.001), health plan expenditures decreased nonsignificantly by $4 PMPM (13%; 

 = .282), and total medication expenditures decreased significantly by $9 PMPM (24%; 

). For the hypertension cohort, member expenditures decreased significantly by $4 PMPM (103%; 

 <.001), health plan expenditures increased significantly by $3 PMPM (29%; 

 <.001), and total medication expenditures decreased nonsignificantly by $1 PMPM (7%; 

 = .118). For the hyperlipidemia cohort, member expenditures did not change (

 = .471), health plan expenditures decreased nonsignificantly by $3 PMPM (8%; 

 <.085), and total medication expenditures decreased nonsignificantly by $3 PMPM (7%; 

For the descriptive comparisons of mean days’ supply changes in the year before and after VBF implementation for the intervention and control groups in the diabetic cohort, we found that the intervention group had an increase in days’ supply PMPM for medications moved into lower co-payment tiers and a decrease in days’ supply PMPM for medications with no change in co-payment tiers (

). In the hypertension cohort, we found that the intervention group had an increase in days’ supply for medications moved into lower co-payment tiers and no change in days’ supply for medications with no change in co-payment tiers or that moved into higher tiers. In the hyperlipidemia cohort, we found that the intervention group had an increase in days’ supply for medications moved into lower co-payment tiers and a decrease in days’ supply for medications with no change in co-payment tiers or that moved into higher tiers.

We found that the VBF decreased overall co-payments for antidiabetic and antihypertensive medications but increased overall co-payments for antihyperlipidemic medications. These co-payment changes did not have a statistically significant effect on medication adherence as measured by pharmacy claims. However, the percentage changes in adherence for the hypertension and hyperlipidemia cohorts (3% and 5%, respectively) were in line with the improved adherence findings from other VBID studies.

One possible reason as to why this same magnitude of adherence change was not statistically significant was that, as an intervention that increased and decreased co-payments, adherence may have increased for patients on highervalue drugs and decreased for patients on lower-value drugs. This would tend to increase the variance of the estimates, potentially contributing to the nonstatistically significant adherence findings.

The VBF did have measureable effects on medication expenditures. For the diabetes cohort, we found statistically significant reductions in expenditures due to the VBF from the member and total medication perspectives. In contrast, for the hypertension cohort, member medication expenditures decreased while health plan expenditures increased significantly.

The different mean overall co-payment changes for each of the 3 disease cohorts, along with no significant effects on adherence, yet different effects on expenditures, prompted the additional exploratory analyses. The VBF is expected to increase utilization of medications moved into lower co-payment tiers and decrease utilization of medications moved into higher co-payment tiers; therefore, overall utilization may not change. Further, adherence primarily measures changes in the intensive margin of use, the level of utilization among users. In contrast, co-payment changes due to the VBF can also affect the extensive margin of use (an increase or decrease in the total number of users). Hence, for our exploratory analyses, we classified medications by changes in co-payment tiers and we utilized days’ supply PMPM as a more inclusive measure of changes in utilization.

In these exploratory analyses, we found that for the diabetes and hyperlipidemia cohorts, there was an increase in days’ supply for medications subject to lower co-payments (moved into lower tier) and decreased days’ supply for medications subject to higher co-payments (moved into higher tier or no change in tier). For the hypertension cohort, the days’ supply increased for medications subject to lower co-payments and did not change for medications subject to higher copayments. These exploratory results suggest that individuals in diabetes and hyperlipidemia cohorts may have decreased utilization of lower-value drugs and increased utilization of higher-value drugs.

Our results suggest that the expected impact of a VBF depends on 4 factors: 1) the magnitude and direction of co-payment changes, 2) the sensitivity of individuals to co-payment changes (ie, elasticity of demand), 3) the incremental effect of the change in medication utilization on costs and outcomes (ie, whether individuals are shifted toward medications with lower costs and better health outcomes or both), and 4) the relative number of individuals on high- versus low-value drugs prior to VBF implementation. The second, third, and fourth factors translate the direct effect of the VBF on co-payment changes into downstream effects on medication utilization, individual patient costs, and outcomes and population costs and outcomes, respectively.

In this study, among the diabetes and hypertension cohorts, mean co-payments were both reduced by the same amount. However, the diabetic members appeared to be more sensitive to the price changes and switched from low-value to high-value drugs. If, for the diabetes cohort, the higher-value drugs were less costly than the lower-value drugs, then a shift to higher-value drugs would explain the member and total savings. In contrast, despite the same mean reduction in co-payment, members with hypertension did not seem to be as price-sensitive: they continued to use the same amount of low-value drugs and slightly increased their use of high-value drugs. This could result in the observed cost shift from member to health plan if the increased health plan expenditure due to the increased utilization of high-value drugs more than overcomes the increased cost sharing for low-value drugs. This is particularly possible given that mean co-payments decreased overall for the antihypertensive drugs.

Because value in a VBF setting is measured as a ratio of costs relative to health benefits, the expected net effect of a VBF may be to reduce costs or improve health outcomes, or both. In this study, we measured medication adherence and expenditures; however, nonmedication expenditures and health outcomes were not measured. Yet, these are important outcomes that help to understand the overall impact of the VBF policy. Our previous work had analyzed the effect of the VBF on nonmedication health expenditures and emergency department visits, hospitalization, and office visits, and had found no clinically and no statistically significant effects. For this study among these smaller chronic disease cohorts, our preliminary power calculations revealed that we would be insufficiently powered to detect any differences in these nonmedication outcomes.

A second limitation is that the exploratory analyses that revealed associations between days’ supply changes and co-payment tier changes were descriptive in nature and were intended for hypothesis generation and to guide future analyses. Future analyses with larger sample sizes should consider inferential statistics in order to test the hypotheses generated from these exploratory analyses.

A third limitation is the use of pharmacy claims as a proxy measure of medication adherence. Medication adherence is a complex health behavior, making measurement challenging. However, current healthcare quality indicators, such as the CMS Star Ratings, use claims-based measures of medication adherence.

A fourth limitation is that our sample was drawn from a working- age population and their dependents; thus, our results may not necessarily be generalizable to other populations, such as the poor, elderly, or chronically ill. This is an important limitation in light of the CMMI VBID pilot studies that will be conducted in the Medicare population. The effect of a VBF on such a population will need to be validated.

POLICY

A value-based formulary was implemented that used cost-effectiveness analysis to inform medication co-payments. Diabetes cohort expenditures decreased by $9 per member per month.

Impact of a Value-Based Formulary in Three Chronic Disease Cohorts

 Although patients with cancer often face serious financial hardships, few studies have reported on strategies to mitigate this burden. Improving literacy about the financial aspects of cancer care may decrease the negative financial impact of cancer diagnosis and treatment. We obtained input from patient stakeholders on the perceived value and optimal design of a financial literacy program in the advanced cancer setting.

 A series of semi-structured interviews were conducted, during which patients with either colorectal or breast cancer were asked to describe the impact of cancer on their finances and employment, to state their preferences about discussing costs with their providers, and to give input on development of a financial literacy course.

Twenty-one patients (76% Caucasian) completed interviews, the majority of whom had Medicare or commercial insurance (71%). Lost income from early retirement or disability was the most financially burdensome experience for 67% of patients. The majority of patients (76%) reported that a financial literacy course would be helpful in navigating the cost of cancer care. Most preferred the course be administered at diagnosis in a live group format.

 Feedback from patients with cancer supported the development of a group financial literacy course that addresses barriers to discussing cost concerns, employment changes during cancer, and available resources for financial assistance.

Am J Manag Care. 2017;23(3 Suppl):S58-S64

We explored attitudes around the development of a financial literacy program for patients with cancer. 

		Lost income from early retirement or disability was the most financially burdensome experience for 67% of patients with breast or colon cancer in our study. 

		Over 75% of patients reported that a financial literacy course would be helpful in navigating the cost of cancer care. 

		Major topics to cover in the financial literacy course include employment issues, barriers to discussing costs, and resources for financial assistance.

The term “financial toxicity” has gained traction in the oncology community in recent years and captures the spectrum of financial hardships faced by cancer survivors (eg, loss of productivity, high out-of-pocket [OOP] spending, depletion of savings, medical debt, bankruptcy). Recent evidence suggests that patients who experience financial toxicity are at risk for decreased treatment adherence, poorer quality of life, and worse survival.

 The growing intersection between the financial and clinical aspects of cancer care thus represents an emerging challenge in oncology.

Despite an improved understanding of the problem of financial toxicity, there is a relative lack of research and guidance on how best to help families deal with the cost of cancer care. Organizations, such as the American Society of Clinical Oncology (ASCO), have called for increased communication between patients and oncologists about the cost of cancer care.

 We agree, but also believe that addressing this problem will require a comprehensive and multifaceted approach that targets various factors that contribute to financial toxicity: lack of awareness about how to navigate the costs of care, lack of budget planning, high OOP spending on cancer therapy, and difficulty in managing other fixed expenses (

). We propose that aligning patients with organizations and resources to help navigate the cost of their care may help to decrease and prevent their financial stress and burden.

In partnership with the nonprofit organization Consumer Education and Training Services (CENTS), which specializes in financial literacy and education for various groups throughout western Washington state, we are developing a financial literacy course targeted to patients with cancer. We intend for this course to provide not only basic information about health insurance, disability, and employment benefits, but also to provide 1-on-1 budget planning with a trained specialist. Because stakeholder input is important in the development of meaningful interventions, we conducted a qualitative survey-based study with the goal of obtaining feedback from patients regarding their financial experiences during treatment, interest level in a financial literacy course, desired course content, and perspectives on communicating about costs with their providers.

We conducted semi-structured, in-person interviews with patients with advanced cancer being treated at 2 University of Washington clinical sites (Harborview Medical Center [HMC] and Seattle Cancer Care Alliance [SCCA], both in Seattle). HMC is a county hospital with a large immigrant and uninsured population. SCCA is the outpatient clinical oncology arm of the University of Washington. The study protocol was approved by the institutional review boards at these institutions.

We identified patients 18 years or older with either metastatic breast cancer or colorectal cancer on active treatment at either HMC or SCCA. These cancers were chosen as they are both common diseases with many expensive treatment options.

The interview guide was developed in collaboration with CENTS, adopting many questions previously tested and used in a study assessing the financial experiences of patients with colon cancer.

 In order to maximize patient comfort and encourage feedback, an experienced nonclinical interviewer conducted all inperson interviews, transcribed them, and kept detailed field notes. Demographic and clinical information was obtained from review of the patients’ electronic health records. Participants received a $20 gift card incentive for their participation in the interview.

This was a qualitative study using descriptive statistics to understand characteristics of the study population. Means, medians, and proportions were used to describe the types of financial challenges patients faced, levels of pre- and postdiagnosis financial stress, barriers to communication with providers, preference for a financial literacy course, and desired course structure and content. To identify the major topics that would inform a financial literacy course, the principal investigator (author VS) actively reviewed and re-reviewed all transcripts and field notes in detail and identified recurring key themes by counting the frequencies of various constructs. Through iterative reading, provocative quotations and illustrative examples were established. Investigators then discussed the interview results with the CENTS project volunteers to inform the financial literacy course development.

A total of 21 patients across both institutions (HMC and SCCA) met eligibility criteria and completed in-person interviews. The majority of participants (mean age = 56 years) were women with breast cancer (76%) and were either commercially insured or had Medicare with a supplement plan (66%) (

). Most patients were also highly educated and married (57%).

Knowledge and Resource Gaps Identified Through Patient Interviews 

Key topics that were identified as important to address in developing the financial literacy course include: 1) implications of cancer on employment and income, 2) challenges in navigating and understanding health insurance plans and bills, and 3) barriers and fears about discussing costs with healthcare providers.

Implications of Cancer Diagnosis on Employment and Income 

The majority of patients in this study were employed prior to diagnosis (86%) and transitioned to unemployment, retirement, or disability as a result of cancer diagnosis (

). A significant proportion of patients (67%) reported lost income as one of the most burdensome financial aspects of treatment relative to other aspects (eg, costs associated with chemotherapy, diagnostics, transportation). Although there was some evidence of poor financial health in patients before diagnosis (19%), approximately 75% of all patients experienced a major financial hardship—including accrual of debt and nonadherence to cancer treatment due to cost concerns&mdash;following diagnosis as a result of cancer-related spending. The proportion of patients with total annual income greater than $50,000 was 62% before diagnosis and 48% following diagnosis. Financial stress was measured before and after diagnosis using a 5-point Likert scale. The mean financial stress level was significantly higher post diagnosis (3.5) compared with pre-diagnosis (2.05) (

Patients reported frustration with the inability to work during treatment and attributed many of the difficulties in paying the OOP expenses to the decline in income. Patients’ inability to advance their careers, invest in retirement, and accumulate savings for the family were seen as major stress factors. As one participant stated, “Even if I survive the cancer, my quality of life will not be as good because my retirement plan has suffered.” The inability to work also seemed to have an impact on patients from a psychological standpoint: “It has been hard to go from the ‘breadwinner’ in the family to having to rely on others.” From a logistic standpoint, several patients reported lack of transparency about the process of filing for disability and were unaware that they would qualify for Social Security disability benefits. At the same time, the process of filing for disability took longer than anticipated, during which period, several individuals faced significant financial hardship: one reported becoming homeless and staying in shelters during this period. Additionally, transitioning back to the workforce from disability was a deterrent for many who worried about a gap in insurance benefits during this time as they went from Medicare coverage back to an employer-based health plan.

Challenges in Navigating and Understanding Health Insurance Plans and Bills 

Most patients in this study had either commercial insurance or Medicare with a supplemental plan (66%); however, there were 6 patients (29%)—the majority from HMC&mdash;with either Medicaid or institutional charity care coverage. Patients consistently reported difficulty in understanding paperwork and feeling overwhelmed by Medicare and Medicaid applications, although social workers were usually able to provide guidance and support. Patients also described confusion understanding bills and explanation of benefits and perceived the frequent delays in rendering coverage decisions as “unfair.” Despite the recent Affordable Care Act legislation prohibiting health plans from instituting lifetime coverage limits, many patients also reported fears about hitting a “cap” in spending and being “kicked off” their insurance plan. Finally, many patients reported lack of knowledge about how to navigate between potential insurance plans and how to anticipate higher OOP spending in the “donut hole,” which created tension for some worrying about how to budget other monthly expenses. Switching between insurance plans (eg, moving to a spouse’s plan or transitioning to Medicare) was often associated with large changes in co-payments for chronic medications; these unanticipated changes led to financial difficulties for many patients.

Barriers and Fears About Discussing Costs With Healthcare Providers 

Patients were asked a series of questions about their preferences in communicating about costs with their oncologists. Only 12 patients (57%) actually discussed treatment costs with their physicians, which is consistent with previous studies.

 Of the 9 patients (43%) who did not discuss treatment costs, 6 reported a treatment-related financial burden of 3 or higher (on a 5-point Likert scale). Information about treatment costs was also not readily available to patients; only 2 patients (10%) reported having prior knowledge of expected costs prior to treatment. Interestingly, only 11 patients (52%) actually believed that physicians should discuss the anticipated costs of treatment with patients prior to making a treatment decision.

When asked more open-ended questions about these discussions, patient responses were mixed. Some patients felt that prior knowledge about anticipated costs would help with short-term and long-term financial planning (eg, monthly budgets, life insurance policy purchasing) and some were amenable to the idea of cheaper treatment alternatives as long as they were “similar in effectiveness” or talking to providers about how to “get the best treatment for less.” One patient stated that “the more information about costs that are exchanged, the more we feel in control.” Other patients viewed prior knowledge of treatment costs as a way of talking to their physicians about “spacing out CT scans” or “evaluating how to avoid duplicating lab draws and imaging tests…the costs of which can add up over time.”

Nevertheless, many patients were strongly against the idea of discussing costs with providers because: 1) cost information would have been overwhelming at diagnosis or 2) they were concerned that discussing costs could influence the physician to offer less-effective treatment. Provocative statements around these concepts include the following:

“Since there is no money and no way to afford the chemotherapy, it is too overwhelming to discuss costs.” “I prefer the doctor’s time to be spent focusing on the cancer and the treatment.” “At diagnosis, I knew that costs would be exorbitant, but I was more concerned at that point about receiving good care.” “I do not think it is the doctor’s responsibility to talk about costs or provide cost information. In fact, it is better for the doctors to be unaware of costs entirely since this information may sway their recommendation.” “When your financial status is not good, it is paralyzing to know the costs in advance.” “I want to survive cancer, so I kind of don’t care how much it costs.” “I don’t want to be shirked on a full diagnosis or full treatment. I will pay the price.”

Finally, many patients simply believed that physicians are a very poor resource for cost information. Patients expressed surprise at the fact that “not even the seller of the service is able to tell you how much it is going to cost you” and that “doctors have no idea about drug costs even when asked directly.” Despite physicians’ lack of knowledge about cost, patients did value recognition of the financial aspect of treatment: “I do not expect my doctor to be a financial wizard, but I would have liked some acknowledgement that the treatment will have an impact on my financial health as well as my emotional and physical health.”

Preferences for Financial Literacy Course Format and Content 

In addition to identifying challenges and barriers to dealing with the cost of cancer treatment, as discussed above, patients were also surveyed about their interest in a financial literacy course and their preferences for course content and timing. A total of 16 patients (76%) reported that a financial literacy course would be helpful, with 43% desiring the course to be administered live in a group setting. Of the 10 patients who did not prefer that physicians should disclose costs with patients prior to treatment, 50% still felt that a financial literacy course would be helpful. Many felt that it would be helpful to learn from others going through a similar situation and might generate discussion that could be relevant to them, and the majority (52%) felt that the course should be administered at the time of diagnosis. Potential course topics of greatest interest to patients are summarized in 

Realizing that patients often have thought of helpful strategies that providers, investigators, and organizations like CENTS may not have discovered, we asked patients to describe helpful ways in which they previously coped with the cost of cancer treatment. Patients described several strategies, including increasing life insurance policies; eliminating superfluous spending; asking friends for help with meals, transportation, and childcare; using food stamps; comparing pharmacy prices for the same medication; aggressively pursuing resources available through organizations like Cancer Lifeline, Patient Advocate Foundation, and Patient Access Network Foundation; accepting “donated” work leave; keeping careful records of medical expenses for tax purposes; and utilizing HopeLink transportation assistance. We decided that it would be important to include a discussion of these real-life successful strategies in the course.

Following the feedback obtained through the patient stakeholder interviews, the investigators held a meeting with the CENTS volunteers to debrief and discuss course development in greater detail. We observed that many patients were overwhelmed by treatment costs, but were unwilling to address these concerns at diagnosis due to various reasons. In particular, concerns about receiving lower-quality care were preventing many patients from managing their finances proactively. A required component of the course, therefore, would revolve around bridging the gap between patients and the clinical team about discussing costs.

This paper describes results from a patient survey regarding treatment-related financial experiences and interest in a financial literacy course.

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