Contributor: American Patients vs Foreign Governments—A Tale of 2 Value Sets

Patients in the US currently benefit from faster access¹ to more innovations² compared with their ex-US peers. American patients consistently report valuing access to pharmaceuticals and the autonomy to choose, alongside their providers, from available treatment options that improve their lives and the lives of their loved ones. These perspectives highlight that US patients prioritize both faster access to effective treatment options and the long-term health benefits those medicines deliver. American policy makers³ have recently echoed this view, recognizing the importance of timely access while emphasizing that health care and medicines should be seen as a strategic investment in population health rather than a simple budgetary expense to be minimized.

National health technology assessment (HTA) bodies, funded by foreign governments, inform decisions for national health systems about which health products will be purchased and how they will be made available to patients. These HTA bodies are tasked with making health care allocation decisions,⁴ often under the assumption⁵ that health care spending is fixed and that spending on one treatment advance comes at the expense—or opportunity cost—of other beneficial interventions. Unlike countries with national HTA—including Australia, Canada, France, Germany, Japan, Switzerland, and the UK—the US does not have a centralized national authority determining what drugs should be made available to which patients and does not assume that spending on new treatments must be fixed regardless of a treatment’s long-term benefits to patients and society.

Pharmaceutical research and development is a global public good, and policies that ensure all nations fund the future of innovation based on their fair share warrant ongoing consideration.⁶ At the same time, to ensure that American resources continue to fuel the future of pharmaceutical innovation, medicines should be valued in alignment with the views of American patients, rather than the narrow, cost-containment decisions of foreign governments. As the world’s leader in biopharmaceutical innovation, the US should also lead in how medicines are valued. American perspectives on value should be aligned with what American patients consistently recognize, but what many foreign HTAs often overlook: that the long-term impacts of medicines warrant valuing medicines as an investment in future improvements for patients and society, not merely a fixed or short-term expense.

Here, we discuss what is known about American patients' values for pharmaceutical treatments and the ways in which foreign HTAs make access recommendations within government-determined frameworks. We compare American priorities and foreign processes across 2 key dimensions: patient access and autonomy, and the breadth of treatment impacts considered.

What Do American Patients Value?

Advances in pharmaceutical innovation over the past 2 decades have influenced how American patients perceive their health care. Today, US patients expect not only access to cutting-edge therapies but also meaningful involvement in decisions about their care. This combination of expectations for innovation and preferences for personal agency in treatment decisions is part of the American context.

Patient access and autonomy. Patient access to prescription drugs—a prerequisite for meaningful care—is determined both by regulatory approval pathways and payer coverage policies. Patient groups have advocated for programs that improve rapid access to innovation, such as the Accelerated Approval pathway⁷ and incentives for treatments for rare diseases.⁸ Simultaneously, they have challenged barriers that insurers erect, such as prior authorization and high patient cost-sharing,⁹ which limit patient access to safe and effective treatments, including those recommended by clinical guidelines and professional medical societies.

American patients similarly value the autonomy afforded when multiple treatment options are available. Treatment autonomy reflects the ability for patients and their families to take informed, active, and collaborative roles¹⁰ in designing individualized treatment plans with their health care providers, rather than passively consenting to purely directive, one-size-fits-all approaches to health care. Autonomy facilitates participation in shared decision-making that incorporates patient values for treatment alongside their desire and capacity for self-management.¹⁰ Interventions that promote autonomy are positively associated with clinical effectiveness,¹¹ quality of life,¹² and confidence in disease management.¹³ Autonomy in treatment decision-making is often one of the most important concerns for American patients, particularly in severe conditions like cancer¹⁴ and ALS.¹⁵

Treatment impacts. The ways in which therapies affect the lives of patients and their loved ones include broad effects on overall health and well-being, extending well beyond life extension and aggregated quality-of-life measures. American patients recognize—and value—a wide breadth of treatment impacts. For example, patients value treatments that reduce the severity and/or frequency of symptoms, including the physical¹⁶ and emotional¹⁷ impacts of disease. Notably, rankings of the importance of certain symptoms often differ between patients,¹⁸ underscoring the importance of the patient voice in treatment selection. Depending on the patient, an individual may primarily prefer the ability to complete basic activities of daily living,¹⁷ return to work,¹⁹ work productively,²⁰ or care for their family.²¹ During shared decision-making, these valued health benefits are weighed against the risk of adverse events. Studies across a variety of conditions have found that American patients express a willingness to accept substantial treatment risks²² that often exceed what their physicians believe they would be willing to accept.¹⁸

Patient choice for treatment extends beyond immediate physical considerations to characteristics of the treatment itself, as well as its impacts on caregivers and the patient’s longer-term future. American patients report that disease management—the workload in managing a condition and its treatment—often ranks as a top priority,²³ particularly in chronic conditions²⁴ and those affecting older patients.²⁵ Patients also prioritize the impact of their treatments on caregiver burden; this preference has been strongly expressed for rare childhood diseases²⁶ and those affecting older individuals.²⁷ When thinking about the long-term impact of drugs, patients—particularly those living with severe²⁸ and/or progressive conditions²⁶—often weigh the insurance value of treatments, recognizing the protection a treatment may provide from future physical and financial risk for themselves and their families. American patients similarly recognize option value—the value in a treatment today that extends their life, allowing them to take advantage of future new treatments29; option value is often reported as a priority for patients with diseases that cause high mortality alongside a high rate of pharmaceutical innovation.²⁶ Alongside the future-oriented concepts of insurance and option value, patients recognize the human value of their potential future with treatment¹⁴—or value of hope³⁰—a concept described as a priority for conditions that impact both children²⁶ and adults.³¹

Do Foreign HTA Bodies Incorporate American Patients’ Values for Prescription Drugs?

Foreign HTA is designed as a gatekeeper funded by government entities tasked with making short-run health care allocation decisions, typically by recommending whether national health systems should provide access to newly launched drugs in their countries. They have difficulty³² incorporating the values of the patients in their own countries (let alone those of American patients) into their recommendations. Instead, they emphasize population average clinical benefits and net costs,³³ often quantifying these benefits and costs using quality-adjusted life-years (QALYs),³⁴ a metric Congress has restricted³⁵ Medicare from using in coverage and reimbursement decisions in a manner that discriminates against the elderly, disabled, or terminally ill.

Both QALY- and non–QALY-based assessments employed by foreign HTAs have limited ability to account for individual patients’ unique needs and priorities³⁶ and are instead viewed as another hurdle to accessing care. At the same time, HTAs often cannot or do not incorporate methodological improvements,³⁷ likely reflecting the difficulty in distilling broad and heterogeneous treatment impacts to a single number.³⁸ Rather than viewing an innovative medicine as an investment toward improving health and health systems, HTAs often view an innovative medicine as an added constraint within a fixed and siloed budget.

Patient Access and Autonomy

Research consistently demonstrates that American patients have faster¹ and more robust² access to new drugs than those outside the US. Part of this difference is due to ex-US HTAs. In contrast to the ideal of the American system, which recognizes access to new medicines as an added benefit, HTA is often a time-intensive exercise funded by a single-payer national health system that primarily views access to new medicines as an additional cost.³⁹ In doing so, HTA practices minimize the importance of patient autonomy to select from a range of treatment options based on their preferences,⁴⁰ emphasizing aggregate benefits and costs across a national health system.

HTAs that focus on cost-effectiveness analyses necessarily consider impacts on patients in an aggregated way using special measures⁴¹ of health-related quality of life (HRQOL; eg, SF-36) or health state utilities (HSUs; eg, EQ-5D). In a targeted literature review, we did not find any studies demonstrating that American patients’ values can be fully expressed in such constructs. These are research constructs to simplify economic analyses, not optimal ways to incorporate patients’ or their preferences⁴² to inform HTA decision-making.

Treatment Impacts

The approaches used by foreign HTA bodies prioritize some impacts of treatment—generally, clinical efficacy and cost-effectiveness³³—while discounting many others that American patients prioritize in their treatments. Others report that European HTA decisions most often, and sometimes exclusively, focus on characteristics of the disease and technology, clinical effectiveness, economic aspects, and safety,³⁶ minimizing the role of patient, ethical, and societal aspects⁴³ of pharmaceutical impact.

Among the treatment impacts prioritized by American patients discussed above, HTA bodies are best positioned to capture aspects of symptom burden and physical functioning. However, experiences with symptoms and physical functioning vary greatly⁴⁴ by disease and across patients in ways that can be challenging to measure and are not fully reflected in the aggregate methods (eg, mean QALYs gained) required by HTA. Furthermore, how HTAs sum up the costs and benefits of new treatments may differ vastly from the risk tolerance of those choosing to take a treatment.⁴⁵ While some HTAs in certain conditions account for factors that commonly affect risk tolerance (eg, unmet needs and severity of disease), they often do so as a secondary or contextual concern.

Many other treatment priorities expressed by American patients are only minimally, if at all, incorporated into HTA.³² For example, HTAs may incorporate treatment burden if evidence demonstrates that factors such as route of administration or dosing frequency affect adherence and subsequent outcomes. Aside from that, treatment burden is, at best, a contextual consideration for most HTA, as is caregiver burden. The treatment-level focus of HTA constrains its ability to account for insurance and option value. At the same time, a heavy reliance on single, quantitative metrics, such as QALYs and cost, leaves little room to consider qualitative patient values, such as the value of hope.

A Call to Action

Fundamental differences in how value is conceptualized and measured create contrasting approaches to health care decision-making. The Figure illustrates this divergence: American patients prioritize access, autonomy, and diverse treatment impacts through market-based systems, whereas foreign HTAs constrain future investments in health within narrower government-determined frameworks. Foreign value frameworks capture some measures that matter to American patients, while missing many other measures supported by the literature. In some cases, these foreign approaches use a measure—the QALY—that federal law³⁵ prohibits Medicare from using in coverage decisions in a manner that discriminates against the elderly, disabled, or terminally ill. As pharmaceutical research and development policies evolve, it is crucial to embed American patient values in reimbursement deliberations and frameworks, rather than substituting them with the priorities and values of foreign governments.

The stakes in shaping future US pharmaceutical research and development policies are high. Importing foreign approaches risks sidelining the access and impacts that American patients value, including treatments that have meaningfully extended and improved lives.⁴⁶ In contrast, policy approaches that view pharmaceutical treatments as long-term investments in health, rather than short-term budgetary expenses, better reflect the stated priorities of American patients and support a system that delivers on what matters to them. By not importing decisions of foreign HTAs, we can pursue reimbursement that is aligned with the needs and priorities of American patients and accounts for the unique characteristics and heterogeneity of patient groups across the country.

Value assessment should be a multistakeholder deliberative process that incorporates patient perspectives while managing conflicts from both buyers and sellers. It should balance scientific evidence with transparent judgment, aiming to inform—not dictate—reimbursement and coverage decisions to payers and purchasers. Value in the US should reflect diverse patient needs, societal benefits, and local treatment contexts, recognizing that both quantitative and qualitative evidence are contributing factors. Cost-effectiveness models are one component of value assessment and should therefore be viewed as a tool, not a rule,⁴⁷ to support negotiations between payers and manufacturers in ensuring fair, patient-centered outcomes that enhance health care decision-making and system sustainability. By meaningfully engaging stakeholders, especially patients, we can ensure that assessments capture what truly matters to patients, foster trust, and promote sustainable and equitable access to health care.

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