Framework to Address High Cost Burden for People with Serious Chronic Conditions

Advocates for people living with serious chronic illnesses share concerns about increasingly unreasonable cost-sharing required of patients to access recommended and needed care.  To facilitate positive change, a group of concerned stakeholders is encouraging a national dialog to raise awareness of the critical challenges high out-of-pocket costs present to people living with serious illness and promote development of evidence-based, patient-centered solutions.  The Partnership to Fight Chronic Disease is releasing a framework to guide discussions and facilitate the development of patient-centered policy changes.
Positive Change Requires Evidence-Based, Patient-Centered Solutions: A Framework
Shifting costs onto people living with chronic conditions is not a solution to lowering health care costs, and, in fact, may increase spending as these individuals delay or avoid treatment and care-seeking needed to maintain and improve health.  Evidence-based, patient-centered solutions must enable people living with serious chronic conditions to have affordable access to needed care throughout the year.  To work, solutions must:

  • Capture the full and long-term benefits of health and wellbeing, reductions in disability, and economic gains to improve health care planning at all levels;
  • Provide much greater transparency of, and accessibility to, information on patients’ costs to allow informed decision-making when choosing among health plans, care providers, and treatment options; 
  • Recognize that compared to the general population, people living with serious chronic illnesses often have extraordinary, complex and high-cost care needs that can dictate or  restrict their treatment options, and that the ongoing financial burdens of chronic illness  seriously limit their ability to absorb high cost-sharing requirements;
  • Utilize consumer economic incentives in coverage models that protect and promote individual health and wellbeing; 
  • Require coverage-related decision-making be based on clinical evidence and patient preference and greater transparency and clarity on decision-making and criteria used for formulary design and utilization management tools, particularly for conditions without evidence-based treatment guidelines;
  • Enable affordable access to care by spreading cost-sharing requirements more evenly throughout the year; 
  • Address the provider network and other issues that lead to surprise medical bills for consumers;
  • Recognize and address how unreasonable consumer cost-sharing exacerbates socioeconomic differences in health outcomes, disease burden, and economic opportunity for people with lower incomes living with chronic illnesses; 
  • Understand that greater flexibility with Health Savings Accounts (HSA) and other potential pre-tax medical spending vehicles are helpful for some and not others, and are not sufficient to resolve the problem;
  • Work to provide small businesses and employers with additional coverage options that facilitate access to comprehensive care while maintaining affordability for both employers and those covered; and
  • Engage and involve health plans, employers, providers, patients, caregivers, and other stakeholders to develop holistic solutions.

Unreasonable Cost Sharing Restricts Access and Increases Burden and Costs of Illness
In response to high health care spending, employers and health plans are shifting more of the cost burden on consumers through high deductibles, coinsurance, and other cost-sharing requirements.  By doing so, plans and employers provide economic incentives to shop around for coverage and care, avoid less emergent or critical care, and lower health care utilization and costs whenever possible.  Research shows that higher cost sharing lowers utilization, in part because people not only skip optional care, but also delay and forego care needed to maintain and improve health.  Delaying care often leads to poorer outcomes and overall health and increases both short- and long-term disability.  Employers, employees and their families bear added costs associated with lost workdays, increases in disability costs and claims, and potential loss of employment.
The shift to higher consumer cost-sharing can have a devastating impact on individuals living with serious chronic conditions, including epilepsy, cancers, multiple sclerosis, and arthritis.  High out-of-pocket costs serve as a significant deterrent to obtaining care needed to maintain health.  These cost-shifting policies ignore the challenging reality that people with serious chronic illnesses already face the highest medical spending. The people with the least flexibility and most at risk are being called upon to make trade-offs and bear the burden both economically and physically.   Cost-sharing, particularly with respect to high deductibles, can vary dramatically during the year and often hits people and families in the beginning part of the year—forcing them to make difficult personal financial concessions and potentially foregoing needed care or treatments.
Long term, these trends to shift increasingly more costs to individuals through higher cost sharing may generate additional medical spending among individuals who need regular care to manage their conditions, prevent deteriorating health, and avoid related medical care spending.  Moreover, the benefits of uninterrupted treatment are undervalued and may not be factored into coverage and benefit design decisions, particularly when those benefits accrue outside the medical system.  For example, a more expensive treatment regimen that allows a person to maintain employment provides a value to the individual and the employer, but not necessarily to the health plan making the decisions on coverage.
Encouraging greater consumerism by people seeking care assumes the availability of accurate and useful information about options; comparability of quality between providers, treatments, products, and services; the freedom to make informed choices; and sufficient resources and health literacy to navigate among them.  For many, it is not just a question of affordability, but also a lack of availability and access of information to make those decisions.  Today, when consumers ask their provider or insurer how much something will cost, neither can reliably tell them how much they will be charged.  That makes informed decision-making impossible and leaves the consumer to discover how much he or she would owe only after care has been provided, a treatment plan determined, and a prescription ordered and/or referral made. These, again, are additional questions and hurdles comes in addition to the typical but expensive costs and stressors of living with a serious chronic condition.
Unreasonable Shifts in Cost-Sharing Take Many Forms
Shifting higher costs onto consumers in an attempt to manage them relies on cost as the primary criteria for health care decision making. It is a blunt tool that fails to adequately account for health and clinical outcomes in coverage.  Some examples of problematic consumer cost-shifting policies include:

  • Rising reliance on coinsurance and the growing numbers of plans offering coinsurance-only options and plans that base coinsurance on the list price of drugs and other products instead of the price the plan or PBM pays;
  • A lack of first dollar, pre-deductible coverage for needed care;
  • Growth in high deductible health plans offered by employers, or only offering such plans to employees;
  • Narrow provider networks and growth in balance billing/surprise medical bills; and
  • Copay accumulator policies that prevent consumer discounts or coupons from counting toward deductibles or other consumer cost-sharing requirements for medicines

Additional Study Is Needed to Define Additional Issues and Potential Solutions

  • Eligibility criteria for, transparency and reliability of patient assistance programs for diverse populations of chronically ill individuals;
  • Growth in number of specialist providers in opting out of contracts with public and private health plans and impact on patient access and costs;
  • Comparison of impact and perceived value of Health Savings Accounts for those with and without chronic illness. 
  • Impact of rising cost sharing on wage growth and economic opportunity, particularly for low- and middle-income individuals families.

We look forward to continuing this discussion and engaging in solutions-focused efforts with all interested stakeholders to lessen the burden and improve health outcomes of people with serious chronic conditions throughout the U.S.
[October 2019]