This piece originally ran in Health Affairs on Oct. 26, 2025.
For more than 40 years, I have advocated against policies that discriminate against people with disabilities and other vulnerable populations.
For more than 40 years, I have advocated against policies that discriminate against people with disabilities and other vulnerable populations.
Recently, I've grown increasingly alarmed watching states prioritize short-term budget savings over patients' needs through Prescription Drug Affordability Boards (PDABs). These boards are relying on overtly discriminatory standards for judging the value of health and disability—either directly or by referencing decisions made by other countries that use these standards. While PDABs exist to reduce system costs, they're doing so at the expense of patients and people with disabilities.
The Fundamental Flaw: Optimizing for Cost, Not Health
One of the most pernicious tools PDABs employ are value assessments commonly used abroad. These cost-effectiveness analyses were created to ration healthcare. Traditional cost-effectiveness is a utilitarian construct to estimate the value of a drug or medical intervention. They rely on metrics like the quality-adjusted life year (QALY), which assigns a numeric value to a year of an individual's life—1 represents perfect health and 0 represents death. People with a disability or chronic disease typically fall somewhere in the middle, meaning a year of their lives is deemed worth less than a year lived in optimal health.
When healthcare interventions are evaluated primarily on financial criteria rather than their ability to preserve or restore health, they introduce disorder that manifests as increased risk for hospitalizations, emergency room visits, death, and a poorer quality of life. By devaluing interventions for people with disabilities based on arbitrary financial thresholds, PDABs create cascading failures in care delivery.
Beyond referencing these discriminatory assessments from European health technology assessment agencies and domestic organizations, PDABs have consistently ignored outreach from patients and people with disabilities through letters and testimony. Patients have urged PDABs to cease using discriminatory metrics and to include their voices more meaningfully as experts on their own health. Yet PDABs have responded by collecting discriminatory data based on QALYs and similar measures like the equal value of life year gained (evLYG), providing little transparency about how these metrics influence their decisions.
Real-World Consequences: Washington State
Washington State provides a clear example of these concerns. The state has openly relied on select organizations that publish data using biased cost-effectiveness analysis methods employing QALYs and similar discriminatory metrics. Washington explicitly calls for submission of data from governmental health technology assessments performed by countries outside the U.S. that rely on QALYs, despite recommendations from the National Council on Disability—an independent federal agency advising the administration and Congress--against doing so.
This approach creates direct misalignment between the biological needs of real-world patients and healthcare delivery. As a person with epilepsy, I am aware of the need for the right care at the right time for the right patient. When PDABs prioritize financial considerations over the reality of what a patient needs in that moment, they create artificial barriers that disrupt care. Healthcare should respond to patient needs—not the other way around.
The implications extend far beyond lowering drug prices for state governments. These policies put government bureaucrats and insurance companies between patients and their doctors, limiting access to treatments when they're viewed as "low value.” Patients are forced to either pay out-of-pocket for preferred drugs or face adverse health events from taking non-preferred alternatives.
Washington State is not alone. Maryland, Oregon, and Colorado are similarly referencing discriminatory cost-effectiveness standards with potentially wide-ranging detrimental consequences for patients when optimizing health outcomes fails to be the primary goal.
The One-Size-Fits-All Problem
Inherently, cost-effectiveness measures result in "one-size-fits-all" outcomes that omit critical input about how treatments benefit individual patients and improve their quality of life. Patients have different needs based on age, income, location, and disability. For example, someone with limited mobility who relies on public transit might prefer a daily pill over a monthly injection at a doctor's office. Others might prefer the convenience of the injection. No person is average, and standardized measures will always fall short of what patients need and deserve.
This standardization violates basic principles of effective healthcare. Systems should minimize unnecessary burdens for patients navigating care, providing pathways that are accessible and free of denials and delays not based on real-world biological needs. When systems impose standardized approaches that disregard individual circumstances, they disproportionately burden those with complex health conditions, particularly marginalized communities.
The Discrimination Built Into QALYs
The fact that the QALY devalues people with disabilities is well-known and reflected in laws and regulations protecting against their use. Analyses conducted by entities—both international and domestic—that use QALYs and similar measures place greater value on years lived in full health, while discounting health gains for individuals living with disabilities and chronic conditions. This results in conclusions that people with disabilities, serious chronic conditions, or older adults with fewer predicted life years may not be worth treating. These conclusions are reflected in denied coverage decisions or excessive utilization management barriers to access treatments prescribed by clinicians.
The value of health improvement is calculated the same for both QALYs and evLYGs, based on biased survey data that fails to capture the real-world value of health improvements for people living with conditions. QALYs and similar measures have been widely recognized as discriminatory against vulnerable groups and are therefore barred by federal nondiscrimination laws—namely the Americans with Disabilities Act which I authored during my time in Congress—and Section 504 of the Rehabilitation Act. Yet the mandate of PDABs and the tools they use run entirely contrary to these critically important protections.
Biased information drives PDAB decisions, resulting in loss of accurate information about treatment effectiveness that may never reach patients. Effective shared decision-making between patients and providers becomes impossible.
Lessons from Abroad
The QALY measure of cost-effectiveness was first developed as a tool to assist foreign governments seeking to limit spending by justifying restricted treatment access. As we've seen abroad, relying on evidence of cost-effectiveness—as opposed to clinical effectiveness studies that tell us what works for whom and when—ignores important patient differences, needs, and preferences.
Consider a recent Canadian example: a mother was told her nine-year-old daughter with Batten disease would no longer receive the medication that stopped her daughter's seizures and improved her quality of life because her province decided it wasn't worth covering. She's the only child with Batten disease in British Columbia, and the drug was approved by Health Canada in 2018. As someone who has epilepsy, I know the value of managing seizures for quality of life. If these foreign standards and restrictions are imported into the U.S., as some PDABs are attempting to do, patients will lose access to medicines they need because they have a rare disease or disability that diverges from the "average."
When healthcare systems deny access to treatments that effectively restore health for individuals based on population-level financial calculations, they create disorder that manifests as increased disease burden, preventable complications, and shortened lifespans. All people deserve to have their lives valued, and nobody should be considered too expensive to get the care they need.
Who Should Make Medical Decisions?
Decisions about health should be made by doctors and their patients—not bureaucrats with no experience with the disease in question. When we talk about the value of a treatment, we should be talking about value to the patient or person with a disability who relies on it to live their daily life.
In Germany, treatments clearly valuable to targeted patient populations have been deemed by their health technology assessment institute to have "no added benefit." German clinicians subscribe to budget limits that force them to prescribe care based on cost, not clinical benefit. If these decisions about value are imported into the U.S. through PDABs, patients and people with disabilities will face formularies that assume treatments are interchangeable. This means more utilization management, giving insurers more power to override physicians' clinical judgment, as seen in countries like Germany where government dictates care.
Healthcare interventions should work to restore health and promote wellness. When policies prioritize non-clinical considerations over patient wellbeing, they disrupt the care necessary for optimal health outcomes.
The Hidden Costs PDABs Ignore
Traditionally, cost-effectiveness analyses don't include important elements like lost productivity or caregiver burden. Over half of all working-age adults in the U.S. have at least one chronic condition. These patients and people with disabilities are two to six times more likely to miss work or be less productive at work. Caregivers too often miss work themselves without access to the care and accommodations that keep their loved ones as healthy and independent as possible. The majority of American caregivers—62 percent—are workers between the ages of 40 and 59.
Instead of putting up barriers to care, we should focus on increasing access to treatments necessary to prevent and manage chronic disease and improve quality of life for people with disabilities. By failing to account for the burdens and costs imposed on patients, families, and society when health is not properly maintained, these narrow approaches create inefficiencies that ripple throughout social systems. Patients ultimately expend significantly more energy managing payers and interacting with the healthcare system when decisions are driven more by cost than by delivering timely, effective care.
A Call for Oversight and Accountability
PDABs are contrary to bipartisan laws and regulations that exist to protect people with disabilities and older adults from being devalued in our healthcare system. They focus on reducing costs for state budgets by relying on value measures that negatively impact formulary placement and therefore increase out-of-pocket costs—in direct contrast to goals of affordability and accessibility. By relying on evidence of cost-effectiveness rather than clinical effectiveness studies that tell us what works for whom and when, we are putting a dollar value on a person's life.
The disability community has fought for over 50 years for protections that states are now gaming to find loopholes, leading to outcomes that defy logic and reality.
Healthcare policies should align with what we know gives us the intended outcome of improved health and wellness. When healthcare financing mechanisms operate in opposition to patient needs, they create disparities, excess morbidity and mortality, and shortened lives—particularly among vulnerable populations. By reorienting our healthcare system around what actually works for patients, we can develop policies that truly conserve human life while reducing unnecessary hardship and ensuring equitable access to effective treatments.
I recommend that the administration and Congress provide more oversight of states using PDABs to circumvent the laws and regulations that protect us from being deemed unworthy of care and treatment. We must ensure that patient health—not budget considerations—drives our healthcare system.
Join the conversation at http://conservelife.org for more information.
The Fundamental Flaw: Optimizing for Cost, Not Health
One of the most pernicious tools PDABs employ are value assessments commonly used abroad. These cost-effectiveness analyses were created to ration healthcare. Traditional cost-effectiveness is a utilitarian construct to estimate the value of a drug or medical intervention. They rely on metrics like the quality-adjusted life year (QALY), which assigns a numeric value to a year of an individual's life—1 represents perfect health and 0 represents death. People with a disability or chronic disease typically fall somewhere in the middle, meaning a year of their lives is deemed worth less than a year lived in optimal health.
When healthcare interventions are evaluated primarily on financial criteria rather than their ability to preserve or restore health, they introduce disorder that manifests as increased risk for hospitalizations, emergency room visits, death, and a poorer quality of life. By devaluing interventions for people with disabilities based on arbitrary financial thresholds, PDABs create cascading failures in care delivery.
Beyond referencing these discriminatory assessments from European health technology assessment agencies and domestic organizations, PDABs have consistently ignored outreach from patients and people with disabilities through letters and testimony. Patients have urged PDABs to cease using discriminatory metrics and to include their voices more meaningfully as experts on their own health. Yet PDABs have responded by collecting discriminatory data based on QALYs and similar measures like the equal value of life year gained (evLYG), providing little transparency about how these metrics influence their decisions.
Real-World Consequences: Washington State
Washington State provides a clear example of these concerns. The state has openly relied on select organizations that publish data using biased cost-effectiveness analysis methods employing QALYs and similar discriminatory metrics. Washington explicitly calls for submission of data from governmental health technology assessments performed by countries outside the U.S. that rely on QALYs, despite recommendations from the National Council on Disability—an independent federal agency advising the administration and Congress--against doing so.
This approach creates direct misalignment between the biological needs of real-world patients and healthcare delivery. As a person with epilepsy, I am aware of the need for the right care at the right time for the right patient. When PDABs prioritize financial considerations over the reality of what a patient needs in that moment, they create artificial barriers that disrupt care. Healthcare should respond to patient needs—not the other way around.
The implications extend far beyond lowering drug prices for state governments. These policies put government bureaucrats and insurance companies between patients and their doctors, limiting access to treatments when they're viewed as "low value.” Patients are forced to either pay out-of-pocket for preferred drugs or face adverse health events from taking non-preferred alternatives.
Washington State is not alone. Maryland, Oregon, and Colorado are similarly referencing discriminatory cost-effectiveness standards with potentially wide-ranging detrimental consequences for patients when optimizing health outcomes fails to be the primary goal.
The One-Size-Fits-All Problem
Inherently, cost-effectiveness measures result in "one-size-fits-all" outcomes that omit critical input about how treatments benefit individual patients and improve their quality of life. Patients have different needs based on age, income, location, and disability. For example, someone with limited mobility who relies on public transit might prefer a daily pill over a monthly injection at a doctor's office. Others might prefer the convenience of the injection. No person is average, and standardized measures will always fall short of what patients need and deserve.
This standardization violates basic principles of effective healthcare. Systems should minimize unnecessary burdens for patients navigating care, providing pathways that are accessible and free of denials and delays not based on real-world biological needs. When systems impose standardized approaches that disregard individual circumstances, they disproportionately burden those with complex health conditions, particularly marginalized communities.
The Discrimination Built Into QALYs
The fact that the QALY devalues people with disabilities is well-known and reflected in laws and regulations protecting against their use. Analyses conducted by entities—both international and domestic—that use QALYs and similar measures place greater value on years lived in full health, while discounting health gains for individuals living with disabilities and chronic conditions. This results in conclusions that people with disabilities, serious chronic conditions, or older adults with fewer predicted life years may not be worth treating. These conclusions are reflected in denied coverage decisions or excessive utilization management barriers to access treatments prescribed by clinicians.
The value of health improvement is calculated the same for both QALYs and evLYGs, based on biased survey data that fails to capture the real-world value of health improvements for people living with conditions. QALYs and similar measures have been widely recognized as discriminatory against vulnerable groups and are therefore barred by federal nondiscrimination laws—namely the Americans with Disabilities Act which I authored during my time in Congress—and Section 504 of the Rehabilitation Act. Yet the mandate of PDABs and the tools they use run entirely contrary to these critically important protections.
Biased information drives PDAB decisions, resulting in loss of accurate information about treatment effectiveness that may never reach patients. Effective shared decision-making between patients and providers becomes impossible.
Lessons from Abroad
The QALY measure of cost-effectiveness was first developed as a tool to assist foreign governments seeking to limit spending by justifying restricted treatment access. As we've seen abroad, relying on evidence of cost-effectiveness—as opposed to clinical effectiveness studies that tell us what works for whom and when—ignores important patient differences, needs, and preferences.
Consider a recent Canadian example: a mother was told her nine-year-old daughter with Batten disease would no longer receive the medication that stopped her daughter's seizures and improved her quality of life because her province decided it wasn't worth covering. She's the only child with Batten disease in British Columbia, and the drug was approved by Health Canada in 2018. As someone who has epilepsy, I know the value of managing seizures for quality of life. If these foreign standards and restrictions are imported into the U.S., as some PDABs are attempting to do, patients will lose access to medicines they need because they have a rare disease or disability that diverges from the "average."
When healthcare systems deny access to treatments that effectively restore health for individuals based on population-level financial calculations, they create disorder that manifests as increased disease burden, preventable complications, and shortened lifespans. All people deserve to have their lives valued, and nobody should be considered too expensive to get the care they need.
Who Should Make Medical Decisions?
Decisions about health should be made by doctors and their patients—not bureaucrats with no experience with the disease in question. When we talk about the value of a treatment, we should be talking about value to the patient or person with a disability who relies on it to live their daily life.
In Germany, treatments clearly valuable to targeted patient populations have been deemed by their health technology assessment institute to have "no added benefit." German clinicians subscribe to budget limits that force them to prescribe care based on cost, not clinical benefit. If these decisions about value are imported into the U.S. through PDABs, patients and people with disabilities will face formularies that assume treatments are interchangeable. This means more utilization management, giving insurers more power to override physicians' clinical judgment, as seen in countries like Germany where government dictates care.
Healthcare interventions should work to restore health and promote wellness. When policies prioritize non-clinical considerations over patient wellbeing, they disrupt the care necessary for optimal health outcomes.
The Hidden Costs PDABs Ignore
Traditionally, cost-effectiveness analyses don't include important elements like lost productivity or caregiver burden. Over half of all working-age adults in the U.S. have at least one chronic condition. These patients and people with disabilities are two to six times more likely to miss work or be less productive at work. Caregivers too often miss work themselves without access to the care and accommodations that keep their loved ones as healthy and independent as possible. The majority of American caregivers—62 percent—are workers between the ages of 40 and 59.
Instead of putting up barriers to care, we should focus on increasing access to treatments necessary to prevent and manage chronic disease and improve quality of life for people with disabilities. By failing to account for the burdens and costs imposed on patients, families, and society when health is not properly maintained, these narrow approaches create inefficiencies that ripple throughout social systems. Patients ultimately expend significantly more energy managing payers and interacting with the healthcare system when decisions are driven more by cost than by delivering timely, effective care.
A Call for Oversight and Accountability
PDABs are contrary to bipartisan laws and regulations that exist to protect people with disabilities and older adults from being devalued in our healthcare system. They focus on reducing costs for state budgets by relying on value measures that negatively impact formulary placement and therefore increase out-of-pocket costs—in direct contrast to goals of affordability and accessibility. By relying on evidence of cost-effectiveness rather than clinical effectiveness studies that tell us what works for whom and when, we are putting a dollar value on a person's life.
The disability community has fought for over 50 years for protections that states are now gaming to find loopholes, leading to outcomes that defy logic and reality.
Healthcare policies should align with what we know gives us the intended outcome of improved health and wellness. When healthcare financing mechanisms operate in opposition to patient needs, they create disparities, excess morbidity and mortality, and shortened lives—particularly among vulnerable populations. By reorienting our healthcare system around what actually works for patients, we can develop policies that truly conserve human life while reducing unnecessary hardship and ensuring equitable access to effective treatments.
I recommend that the administration and Congress provide more oversight of states using PDABs to circumvent the laws and regulations that protect us from being deemed unworthy of care and treatment. We must ensure that patient health—not budget considerations—drives our healthcare system.
Join the conversation at http://conservelife.org for more information.
