In his latest "Chairman's Corner" blog, PIPC Chairman Tony Coelho explains why the "Most Favored Nation" approach to drug pricing will only serve to increase costs for patients and people with disabilities.
Since it was first advanced by CMS in 2019, I’ve staunchly opposed proposals for so-called foreign reference pricing or Most Favored Nation pricing for drugs – not because I don’t want to see lower drug prices, but because this approach exacts too high a price on patients and people with disabilities. I was proud to be the author of the Americans with Disabilities Act (ADA), and I continue to advocate for more robust disability protections, partnering with both Democrats and Republicans to do so. It is what drives me to caution against efforts to model foreign countries that devalue disabled lives.
In the early days of COVID-19 when many states proposed to put people with disabilities at the back of the line for care in a shortage through Crisis Standards of Care, I was very outspoken against those who sought to advance these concepts. At the time, we had strong bipartisan and bicameral support for the Trump administration’s enforcement of existing disability rights laws that, in many ways, distinguish America from other countries by recognizing the equal value of all Americans. States responded by rescinding the provisions of their Crisis Standards of Care that were discriminatory. And ultimately, that work was translated into new regulations protecting people with disabilities from similar threats in the future. Thankfully, the first Trump administration stood with the disability community in that key moment. I hope the President will see the opportunity to work with me again in this moment.
Despite this strong history of supporting the dignity of all lives, the administration continues to raise Most Favored Nation as a strategy for lowering prescription drug costs. This approach undermines critical protections for patients and people with disabilities by importing discriminatory value standards from outside the U.S. It does so primarily by referencing decisions that reference the quality-adjusted life year or QALY and similar metrics that governments outside the U.S. use to ration care for people with disabilities and older adults The QALY measure was created for the purpose of rationing care based on cost effectiveness. It is overtly discriminatory against people with disabilities. As an appalling example, one academic report on QALY found that the score of an individual living with Down syndrome was the same as a miscarriage. The U.S. banned the use of the QALY in Medicare, yet Most Favored Nation would circumvent those protections by importing their use from other countries. Similar to the debate around Crisis Standards of Care, there is widespread agreement across the political spectrum against the use of QALYs.
This issue is not hypothetical. An analysis by the Office of Health Economics (OHE) – the world’s oldest independent health economics research organization – reviewed Health Technology Assessment (HTA) practices across Organisation for Economic Co-operation and Development (OECD) countries, finding that almost 90% of countries – 33 out of 38 – reference QALYs. In these countries, people with disabilities and older adults are not valued equally. They experience health care delays and denials that impose added burdens on themselves and their families. For example, life-altering treatment for cystic fibrosis available in the U.S. for many years is still restricted in Canada and other countries. That’s one example among many in wealthy countries like the United Kingdom, Australia, South Korea, and Canada. Too often we see a mischaracterization that other countries provide more access to care than the United States. Yet, for many populations internationally that need specialized care and may not benefit from a one-size-fits-all health care system, access and health outcomes are far from ideal. In fact, in some of the countries that would be referenced, it is easier to get drugs to die than treatment to live. In these systems, assisted suicide policies are gaining traction due to their cost savings. No person should be denied the care and accommodations needed to live an optimal life or feel coerced to give up on living due to care denials.
This proposed approach also imports medical and health care values that conflict with those of patients in the U.S. At PIPC we have always advocated for empowered, well-informed choices by doctors and patients. Doing so lies at the heart of patient-centered care. Many foreign health care systems don’t hold this same value, instead empowering national government decisions that too often conflict with the needs of patients and their caregivers. Policymakers and patient advocates must oppose so-called solutions that reference foreign values and instead work with our community on alternatives centered on patients and people with disabilities and the strengths of American health care.
I urge President Trump to remember and embrace his prior administration’s commitment to value disabled lives. We all want affordable health care. But we also want the innovations that most improve our quality of life to be accessible to all Americans.
In the early days of COVID-19 when many states proposed to put people with disabilities at the back of the line for care in a shortage through Crisis Standards of Care, I was very outspoken against those who sought to advance these concepts. At the time, we had strong bipartisan and bicameral support for the Trump administration’s enforcement of existing disability rights laws that, in many ways, distinguish America from other countries by recognizing the equal value of all Americans. States responded by rescinding the provisions of their Crisis Standards of Care that were discriminatory. And ultimately, that work was translated into new regulations protecting people with disabilities from similar threats in the future. Thankfully, the first Trump administration stood with the disability community in that key moment. I hope the President will see the opportunity to work with me again in this moment.
Despite this strong history of supporting the dignity of all lives, the administration continues to raise Most Favored Nation as a strategy for lowering prescription drug costs. This approach undermines critical protections for patients and people with disabilities by importing discriminatory value standards from outside the U.S. It does so primarily by referencing decisions that reference the quality-adjusted life year or QALY and similar metrics that governments outside the U.S. use to ration care for people with disabilities and older adults The QALY measure was created for the purpose of rationing care based on cost effectiveness. It is overtly discriminatory against people with disabilities. As an appalling example, one academic report on QALY found that the score of an individual living with Down syndrome was the same as a miscarriage. The U.S. banned the use of the QALY in Medicare, yet Most Favored Nation would circumvent those protections by importing their use from other countries. Similar to the debate around Crisis Standards of Care, there is widespread agreement across the political spectrum against the use of QALYs.
This issue is not hypothetical. An analysis by the Office of Health Economics (OHE) – the world’s oldest independent health economics research organization – reviewed Health Technology Assessment (HTA) practices across Organisation for Economic Co-operation and Development (OECD) countries, finding that almost 90% of countries – 33 out of 38 – reference QALYs. In these countries, people with disabilities and older adults are not valued equally. They experience health care delays and denials that impose added burdens on themselves and their families. For example, life-altering treatment for cystic fibrosis available in the U.S. for many years is still restricted in Canada and other countries. That’s one example among many in wealthy countries like the United Kingdom, Australia, South Korea, and Canada. Too often we see a mischaracterization that other countries provide more access to care than the United States. Yet, for many populations internationally that need specialized care and may not benefit from a one-size-fits-all health care system, access and health outcomes are far from ideal. In fact, in some of the countries that would be referenced, it is easier to get drugs to die than treatment to live. In these systems, assisted suicide policies are gaining traction due to their cost savings. No person should be denied the care and accommodations needed to live an optimal life or feel coerced to give up on living due to care denials.
This proposed approach also imports medical and health care values that conflict with those of patients in the U.S. At PIPC we have always advocated for empowered, well-informed choices by doctors and patients. Doing so lies at the heart of patient-centered care. Many foreign health care systems don’t hold this same value, instead empowering national government decisions that too often conflict with the needs of patients and their caregivers. Policymakers and patient advocates must oppose so-called solutions that reference foreign values and instead work with our community on alternatives centered on patients and people with disabilities and the strengths of American health care.
I urge President Trump to remember and embrace his prior administration’s commitment to value disabled lives. We all want affordable health care. But we also want the innovations that most improve our quality of life to be accessible to all Americans.
