The United States is considering policies that would import overseas pricing and reimbursement for health care – this time for medicines – from other countries. These foreign countries differ greatly from the U.S. in many ways, and perhaps most fundamentally, in the value they place on disabled lives.
The U.S. has been the model for other nations in enacting laws and policies supporting the inclusion of people with disabilities in communities and society, rooted in an ethic that disabled lives are valuable. American laws protecting people with disabilities from discrimination, often rooted in bias and stigma, extend to our health system. The Partnership to Improve Patient Care (PIPC) and over 100 organizations like us believe that all lives, including disabled lives, are of equal and intrinsic worth, and that one’s value should never depend on a government-calculated metric.
Our health system and policy must continue to uphold this fundamental American belief. Therefore, we believe it is imperative to avoid modeling foreign health systems that do not share this ethic.
Key Takeaways:
Overview of U.S. Laws
The U.S. has a long history of enacting laws to protect people with disabilities from being devalued, including in how they receive medical care. In 1973, Congress passed the Rehabilitation Act (Rehab Act) which prohibits discrimination on the basis of disability in programs conducted by federal agencies, in programs receiving federal financial assistance, in federal employment, and in the employment practices of federal contractors. More specifically, section 504 of the Rehab Act ensures that people with disabilities will not be “excluded from participation in, be denied the benefits of, or otherwise be subjected to discrimination,” under any program offered by any Executive Agency, including Medicare.
In 1990, Congress passed the Americans with Disabilities Act (ADA), making discrimination against people with disabilities illegal, requiring employers to provide employees with reasonable accommodations and imposing accessibility requirements on public spaces. Title II of the ADA extended the Rehab Act protections to programs and services offered by state and local governments. Based on this, in 1992, the George H.W. Bush Administration established that it would be a violation of the ADA for Oregon’s state Medicaid program to rely on cost-effectiveness standards devaluing disabled lives to establish its prioritized list of services, as this could lead to discrimination against people with disabilities. The Office of Technology Assessment stated, “The passage of the Americans with Disabilities Act in 1990 (Public Law 101-336) presents another potential avenue by which the Oregon proposal might be challenged.”
In 2010, the Affordable Care Act (ACA) codified similar protections in the context of Medicare, directly stating that the Secretary of Health and Human Services has no authority to deny coverage of items or services “solely on the basis of comparative effectiveness research” nor to use such research “in a manner that treats extending the life of an elderly, disabled, or terminally ill individual as of lower value than extending the life of an individual who is younger, nondisabled, or not terminally ill.”[1] Additionally, the ACA specifically prohibits the development or use of a “dollars-per-quality adjusted life year (or similar measure that discounts the value of a life because of an individual’s disability) as a threshold to establish what type of health care is cost effective or recommended” and clarifies that, “The Secretary shall not utilize such an adjusted life year (or such a similar measure) as a threshold to determine coverage, reimbursement, or incentive programs under title XVIII” (Medicare).”[2]
U.S. Response to the Rise of the QALY
Despite the 1992 administrative decision against allowing use of QALYs in Medicaid, policymakers have grown concerned about the use of value assessments devaluing disabled lives, particularly QALYs and similar measures, in their policy decisions – which is frequently not transparent or well understood. When HHS more recently updated the regulations implementing Section 504 of the Rehab Act, the agency was aware of this problem and was encouraged to address it. Additionally, the department seemed to be positively influenced by the efforts of the first Trump Administration to protect people with disabilities against Crisis Standards of Care that put people with disabilities at the back of the line for care in a shortage during the COVID-19 pandemic. In 2024, the final regulations made it clear that people with disabilities may not be denied or limited medical treatment based on bias or stereotypes, potential burden on others, or belief their lives have lesser value or are not worth living. The rule also explicitly barred use of any “measure, assessment, or tool that discounts the value of life extension on the basis of disability” to deny care or provide unequal care.
In its explanation of the final rule, CMS stated, “The Department interprets recipient obligations under the current language of § 84.57 to be broader than section 1182 of the Affordable Care Act, because it prohibits practices prohibited by section 1182 (where they are used to deny or afford an unequal opportunity to qualified individuals with disabilities with respect to the eligibility or referral for, or provision or withdrawal of an aid, benefit, or service) and prohibits other instances of discriminatory value assessment.” This language implies that the final rule holistically is intended to be interpreted in a manner that is consistent with, and broader than, the law barring the use of QALYs and similar measures in Medicare. CMS also clarified that discounting quality of life based on disability to deny or limit care would likely violate § 84.56, stating too that methods of utility weight generation, which are part of the algorithm for determining a QALY or similar measure, are subject to section 504 when they are used in a way that discriminates.
Other Countries Fall Short of Modeling U.S. Laws Safeguarding Equal Access to Health Care
While many other countries have modeled America’s leadership on accessibility of public spaces and accommodations to enable people with disabilities to work and to live in communities, they fall short of equal health care. Though the United States has not joined the 162 countries that are signatories to what is known as the Disability Treaty (The Convention on the Rights of Persons with Disabilities adopted in 2006 at the United Nations), the treaty was largely modeled on U.S. existing laws, particularly the ADA. The Convention adopts a broad categorization of persons with disabilities and reaffirms that all persons with all types of disabilities must enjoy all human rights and fundamental freedoms. It is stated to “reaffirm that every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others.” While the laws of countries signing onto the Convention tend to align with the ADA’s call for inclusiveness, accommodations and accessibility, they do not provide the same protections related to access to medical care.
International Barriers to Disability Equality in Medical Care
In stark contrast to the U.S., other countries embrace rationing of care by using cost effectiveness benchmarks determined through the use of QALYs. The concept of a QALY originated in the United Kingdom, where it quickly transitioned from being a side show of health economics to driving health care resource distribution. Its use as a benchmark for determining pricing and coverage spread to other countries – but was stopped from infiltrating the U.S. in 1992 when the administration determined it to be a violation of the ADA. Other countries embrace the use of QALYs as an indirect means of devaluing disabled lives in the interest of cost savings. Yet while much of the world has embraced the QALY to ration health care resources, the U.S. has consistently enacted laws and regulations to prevent their use from driving reimbursement and coverage decisions, consistent with the Rehab Act and the ADA.
In 2002, during the Bush administration, policymakers sought for the U.S. to be different from other countries. In a report on drug coverage, before drugs were covered in Medicare Part D, the HHS Office of Assistant Secretary for Planning and Evaluation acknowledged rationing in foreign countries and the inaccuracy of government calculations stating, “Fixed prices based on a government-calculated ‘efficacy’ of an existing drug would necessarily fail to capture newly-identified benefits.” Importing foreign pricing structures based on QALYs threatens to undermine the U.S. safeguards for people with disabilities created to prevent such an outcome.
As the National Council on Disability stated in its 2019 report, “The coverage denials and loss of access to care faced by people with disabilities in these countries illustrate what might happen if the United States made a similar choice.”
Cost Effectiveness of Death
QALYs can even have negative utilities, meaning that the quality of life experienced with a disease or condition is considered worse than death. The cost effectiveness of treating such conditions becomes very difficult using a QALY-based algorithm as life extension would not be valued at all and health improvements are difficult to demonstrate. While the literature is full of examples of public perceptions that death is preferable to living with a disability, we also know that hedonic adaption – how people adapt – leads many people living with disabilities to view their quality of life as good, especially if they have access to high quality health care and accommodations. Providing care and accommodations, while not always the cost-effective choice, is certainly the more ethical choice.
The difference between the U.S. and other countries is apparent in countries that have enacted expansive laws that promote the use of assisted suicide as a cost-effective alternative to coverage of needed treatments. In these countries, we find stories of patients with disabling conditions denied coverage for care and accommodations, while assisted suicide becomes more easily accessible even to individuals who are experiencing aging. These countries make clear that they are willing to pay for the drugs to die while denying coverage for the care to live. Cost effectiveness of assisted suicide has become a consideration in countries that have extended access to assisted suicide to disabled populations. Even disabled infants are at risk, a public policy that has long met with strong opposition from disability policy experts. Views on assisted suicide laws vary – regardless it should not be easier to get the drugs to die than the treatment to live.
Therefore, it is unsurprising that other countries have avoided providing legal protections against discrimination to individuals with disabilities in the context of medical care. To do so would undermine the processes in place to ration health care and to promote a speedy death.
Alignment of American Values Safeguarding People with Disabilities
Thankfully, in America conservative and progressive stakeholders generally agree on a distinctly American ethic that is less utilitarian and more compassionate. Politicians across the political spectrum align in the fight for people living with disabilities and older adults not to be disadvantaged in their ability to receive the health care they need to live at the highest quality of life possible. This uniquely American value system would surely be undermined by importing decisions from other countries where people with disabilities and older adults are assumed less worthy of care.
“The true measure of any society can be found in how it treats its most vulnerable members.” -Mahatma Ghandi
[1] 42 USC Sec 1320e.
[2] 42 USC Sec 1320e.
Our health system and policy must continue to uphold this fundamental American belief. Therefore, we believe it is imperative to avoid modeling foreign health systems that do not share this ethic.
Key Takeaways:
- The U.S. has a long history of laws and regulations (Rehab Act, ADA, and ACA) protecting equal access to medical care for Americans with disabilities;
- More recent regulatory steps have been taken by U.S. agencies to address the increasing influence of quality-adjusted life years (QALYs) in coverage and reimbursement of health care, including important steps taken in the first Trump administration against Crisis Standards of Care that would have put people with disabilities at the back of the line for care in a shortage;
- Other countries have followed the U.S. lead, modeling our rules on accessibility of public spaces and accommodations to enable people with disabilities to work and to live in communities. However, they fall short in providing protections for people with disabilities specific to access to health care;
- In other developed nations, patients face barriers to equal access to health care due to their use of QALYs and rationing of care, as recognized by previous administrations and the National Council on Disability;
- QALY metrics used outside the U.S. rate some states of disability as of lower value than death, reflecting starkly different cultural values in these nations compared to the U.S.;
- The value Americans place on health care that protects the most vulnerable – including people with disabilities – crosses the political spectrum (from progressive to conservative). Policymakers must not undermine these American values by relying on health policy decisions made by foreign governments that rely on QALYs and similar metrics of “cost effectiveness” to ration health care.
Overview of U.S. Laws
The U.S. has a long history of enacting laws to protect people with disabilities from being devalued, including in how they receive medical care. In 1973, Congress passed the Rehabilitation Act (Rehab Act) which prohibits discrimination on the basis of disability in programs conducted by federal agencies, in programs receiving federal financial assistance, in federal employment, and in the employment practices of federal contractors. More specifically, section 504 of the Rehab Act ensures that people with disabilities will not be “excluded from participation in, be denied the benefits of, or otherwise be subjected to discrimination,” under any program offered by any Executive Agency, including Medicare.
In 1990, Congress passed the Americans with Disabilities Act (ADA), making discrimination against people with disabilities illegal, requiring employers to provide employees with reasonable accommodations and imposing accessibility requirements on public spaces. Title II of the ADA extended the Rehab Act protections to programs and services offered by state and local governments. Based on this, in 1992, the George H.W. Bush Administration established that it would be a violation of the ADA for Oregon’s state Medicaid program to rely on cost-effectiveness standards devaluing disabled lives to establish its prioritized list of services, as this could lead to discrimination against people with disabilities. The Office of Technology Assessment stated, “The passage of the Americans with Disabilities Act in 1990 (Public Law 101-336) presents another potential avenue by which the Oregon proposal might be challenged.”
In 2010, the Affordable Care Act (ACA) codified similar protections in the context of Medicare, directly stating that the Secretary of Health and Human Services has no authority to deny coverage of items or services “solely on the basis of comparative effectiveness research” nor to use such research “in a manner that treats extending the life of an elderly, disabled, or terminally ill individual as of lower value than extending the life of an individual who is younger, nondisabled, or not terminally ill.”[1] Additionally, the ACA specifically prohibits the development or use of a “dollars-per-quality adjusted life year (or similar measure that discounts the value of a life because of an individual’s disability) as a threshold to establish what type of health care is cost effective or recommended” and clarifies that, “The Secretary shall not utilize such an adjusted life year (or such a similar measure) as a threshold to determine coverage, reimbursement, or incentive programs under title XVIII” (Medicare).”[2]
U.S. Response to the Rise of the QALY
Despite the 1992 administrative decision against allowing use of QALYs in Medicaid, policymakers have grown concerned about the use of value assessments devaluing disabled lives, particularly QALYs and similar measures, in their policy decisions – which is frequently not transparent or well understood. When HHS more recently updated the regulations implementing Section 504 of the Rehab Act, the agency was aware of this problem and was encouraged to address it. Additionally, the department seemed to be positively influenced by the efforts of the first Trump Administration to protect people with disabilities against Crisis Standards of Care that put people with disabilities at the back of the line for care in a shortage during the COVID-19 pandemic. In 2024, the final regulations made it clear that people with disabilities may not be denied or limited medical treatment based on bias or stereotypes, potential burden on others, or belief their lives have lesser value or are not worth living. The rule also explicitly barred use of any “measure, assessment, or tool that discounts the value of life extension on the basis of disability” to deny care or provide unequal care.
In its explanation of the final rule, CMS stated, “The Department interprets recipient obligations under the current language of § 84.57 to be broader than section 1182 of the Affordable Care Act, because it prohibits practices prohibited by section 1182 (where they are used to deny or afford an unequal opportunity to qualified individuals with disabilities with respect to the eligibility or referral for, or provision or withdrawal of an aid, benefit, or service) and prohibits other instances of discriminatory value assessment.” This language implies that the final rule holistically is intended to be interpreted in a manner that is consistent with, and broader than, the law barring the use of QALYs and similar measures in Medicare. CMS also clarified that discounting quality of life based on disability to deny or limit care would likely violate § 84.56, stating too that methods of utility weight generation, which are part of the algorithm for determining a QALY or similar measure, are subject to section 504 when they are used in a way that discriminates.
Other Countries Fall Short of Modeling U.S. Laws Safeguarding Equal Access to Health Care
While many other countries have modeled America’s leadership on accessibility of public spaces and accommodations to enable people with disabilities to work and to live in communities, they fall short of equal health care. Though the United States has not joined the 162 countries that are signatories to what is known as the Disability Treaty (The Convention on the Rights of Persons with Disabilities adopted in 2006 at the United Nations), the treaty was largely modeled on U.S. existing laws, particularly the ADA. The Convention adopts a broad categorization of persons with disabilities and reaffirms that all persons with all types of disabilities must enjoy all human rights and fundamental freedoms. It is stated to “reaffirm that every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others.” While the laws of countries signing onto the Convention tend to align with the ADA’s call for inclusiveness, accommodations and accessibility, they do not provide the same protections related to access to medical care.
International Barriers to Disability Equality in Medical Care
In stark contrast to the U.S., other countries embrace rationing of care by using cost effectiveness benchmarks determined through the use of QALYs. The concept of a QALY originated in the United Kingdom, where it quickly transitioned from being a side show of health economics to driving health care resource distribution. Its use as a benchmark for determining pricing and coverage spread to other countries – but was stopped from infiltrating the U.S. in 1992 when the administration determined it to be a violation of the ADA. Other countries embrace the use of QALYs as an indirect means of devaluing disabled lives in the interest of cost savings. Yet while much of the world has embraced the QALY to ration health care resources, the U.S. has consistently enacted laws and regulations to prevent their use from driving reimbursement and coverage decisions, consistent with the Rehab Act and the ADA.
In 2002, during the Bush administration, policymakers sought for the U.S. to be different from other countries. In a report on drug coverage, before drugs were covered in Medicare Part D, the HHS Office of Assistant Secretary for Planning and Evaluation acknowledged rationing in foreign countries and the inaccuracy of government calculations stating, “Fixed prices based on a government-calculated ‘efficacy’ of an existing drug would necessarily fail to capture newly-identified benefits.” Importing foreign pricing structures based on QALYs threatens to undermine the U.S. safeguards for people with disabilities created to prevent such an outcome.
As the National Council on Disability stated in its 2019 report, “The coverage denials and loss of access to care faced by people with disabilities in these countries illustrate what might happen if the United States made a similar choice.”
Cost Effectiveness of Death
QALYs can even have negative utilities, meaning that the quality of life experienced with a disease or condition is considered worse than death. The cost effectiveness of treating such conditions becomes very difficult using a QALY-based algorithm as life extension would not be valued at all and health improvements are difficult to demonstrate. While the literature is full of examples of public perceptions that death is preferable to living with a disability, we also know that hedonic adaption – how people adapt – leads many people living with disabilities to view their quality of life as good, especially if they have access to high quality health care and accommodations. Providing care and accommodations, while not always the cost-effective choice, is certainly the more ethical choice.
The difference between the U.S. and other countries is apparent in countries that have enacted expansive laws that promote the use of assisted suicide as a cost-effective alternative to coverage of needed treatments. In these countries, we find stories of patients with disabling conditions denied coverage for care and accommodations, while assisted suicide becomes more easily accessible even to individuals who are experiencing aging. These countries make clear that they are willing to pay for the drugs to die while denying coverage for the care to live. Cost effectiveness of assisted suicide has become a consideration in countries that have extended access to assisted suicide to disabled populations. Even disabled infants are at risk, a public policy that has long met with strong opposition from disability policy experts. Views on assisted suicide laws vary – regardless it should not be easier to get the drugs to die than the treatment to live.
Therefore, it is unsurprising that other countries have avoided providing legal protections against discrimination to individuals with disabilities in the context of medical care. To do so would undermine the processes in place to ration health care and to promote a speedy death.
Alignment of American Values Safeguarding People with Disabilities
Thankfully, in America conservative and progressive stakeholders generally agree on a distinctly American ethic that is less utilitarian and more compassionate. Politicians across the political spectrum align in the fight for people living with disabilities and older adults not to be disadvantaged in their ability to receive the health care they need to live at the highest quality of life possible. This uniquely American value system would surely be undermined by importing decisions from other countries where people with disabilities and older adults are assumed less worthy of care.
“The true measure of any society can be found in how it treats its most vulnerable members.” -Mahatma Ghandi
[1] 42 USC Sec 1320e.
[2] 42 USC Sec 1320e.
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