The SPEAK Foundation sent a letter to the Florida House and Senate expressing concerns about a pair of bills that would import discriminatory value assessment metrics.
Dear Representatives Jonsson and Franklin and Senators Grall and Simon:
As a person with a rare, progressive neuromuscular disease called Limb-Girdle Muscular Dystrophy (LGMD), I am writing to share my deep concerns related to a section of legislation introduced in the Florida legislature that threatens to devalue disabled lives. I am also the founder and president of The Speak Foundation, the largest patient-led organization dedicated to individuals and families living with LGMD.
Patients and people with disabilities have long opposed policies that devalue disabled lives. Yet the Prescription Reduction Incentives and Competition Enhancement Act, HB697 and SB1158, would tie drug prices to those in other countries, presenting Florida beneficiaries with the same challenges as patients in those countries who struggle to access the latest innovations to treat their disability or serious chronic disease. These other countries reference measures of cost effectiveness called quality-adjusted life years (QALYs) that devalue disabled lives by attributing a lower value to a year lived with disability and using a formula for calculating health improvement that fails to account for meaningful quality of life improvements achieved with treatment. The National Council on Disability, an independent agency advising Congress and the administration on disability policy, has recommended policymakers avoid referencing other countries’ QALY-based pricing, stating, “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.”[1]
In Congress, Republicans and Democrats have stood against referencing QALYs in federal health programs, with many seeking to extend Medicare’s existing ban on the use of this measure to all federal
health programs. In fact, the National Right to Life applauded the introduction of the Protecting Health Care for All Patients Act in Congress that would prevent the use of QALYs or similar metrics in health coverage and called it a “life-affirming, dignity-enhancing legislation."[2] Other organizations representing patients and people with disabilities, including the Partnership to Improve Patient Care (PIPC) led by former Congressman Tony Coelho (the original author and sponsor of the Americans with Disabilities Act) have similarly called on Congress to extend Medicare’s ban on the use of QALYs.[3],[4]
For patients and families—especially children—delays in development of new treatments, approval, and access are not abstract policy issues. Many individuals living with rare diseases such as LGMD have no approved treatment options at all. When potentially life-saving therapies are not valued and therefore not developed, patients do not have time to wait for systems to catch up. For a muscular dystrophy patient, time is muscle that we cannot get back.
The legislation also includes provisions related to pharmacy benefit managers and prescription drug formularies that are more appropriately focused on the real access challenges facing patients and people with disabilities. I would encourage the legislature to engage with the patient and disability communities in efforts to advance meaningful legislation that improves access to affordable care, instead of modeling other countries with health systems that systematically fail to value care for people with disabilities.
Thank you for your consideration.
Sincerely,
Kathryn Bryant Knudson
Founder and President, The Speak Foundation
[1]NCD Report on QALYs, https://www.ncd.gov/report/quality-adjusted-life-years-and-the-devaluation-of-life-with-a-disability/
[2] House E&C Committee, https://energycommerce.house.gov/posts/chairs-rodgers-smith-and-reps-burgess-wenstrup-introduce-legislation-to-ban-qal-ys
[3] Open Letter, https://files.constantcontact.com/e7a90be4701/2e199106-a152-4598-838b-1b08dce510c2.pdf
[4] Bipartisan Joint Opinion, Roll Call, see https://rollcall.com/2026/01/15/congress-should-ban-metric-that-devalues-people-with-disabilities/
As a person with a rare, progressive neuromuscular disease called Limb-Girdle Muscular Dystrophy (LGMD), I am writing to share my deep concerns related to a section of legislation introduced in the Florida legislature that threatens to devalue disabled lives. I am also the founder and president of The Speak Foundation, the largest patient-led organization dedicated to individuals and families living with LGMD.
Patients and people with disabilities have long opposed policies that devalue disabled lives. Yet the Prescription Reduction Incentives and Competition Enhancement Act, HB697 and SB1158, would tie drug prices to those in other countries, presenting Florida beneficiaries with the same challenges as patients in those countries who struggle to access the latest innovations to treat their disability or serious chronic disease. These other countries reference measures of cost effectiveness called quality-adjusted life years (QALYs) that devalue disabled lives by attributing a lower value to a year lived with disability and using a formula for calculating health improvement that fails to account for meaningful quality of life improvements achieved with treatment. The National Council on Disability, an independent agency advising Congress and the administration on disability policy, has recommended policymakers avoid referencing other countries’ QALY-based pricing, stating, “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.”[1]
In Congress, Republicans and Democrats have stood against referencing QALYs in federal health programs, with many seeking to extend Medicare’s existing ban on the use of this measure to all federal
health programs. In fact, the National Right to Life applauded the introduction of the Protecting Health Care for All Patients Act in Congress that would prevent the use of QALYs or similar metrics in health coverage and called it a “life-affirming, dignity-enhancing legislation."[2] Other organizations representing patients and people with disabilities, including the Partnership to Improve Patient Care (PIPC) led by former Congressman Tony Coelho (the original author and sponsor of the Americans with Disabilities Act) have similarly called on Congress to extend Medicare’s ban on the use of QALYs.[3],[4]
For patients and families—especially children—delays in development of new treatments, approval, and access are not abstract policy issues. Many individuals living with rare diseases such as LGMD have no approved treatment options at all. When potentially life-saving therapies are not valued and therefore not developed, patients do not have time to wait for systems to catch up. For a muscular dystrophy patient, time is muscle that we cannot get back.
The legislation also includes provisions related to pharmacy benefit managers and prescription drug formularies that are more appropriately focused on the real access challenges facing patients and people with disabilities. I would encourage the legislature to engage with the patient and disability communities in efforts to advance meaningful legislation that improves access to affordable care, instead of modeling other countries with health systems that systematically fail to value care for people with disabilities.
Thank you for your consideration.
Sincerely,
Kathryn Bryant Knudson
Founder and President, The Speak Foundation
[1]NCD Report on QALYs, https://www.ncd.gov/report/quality-adjusted-life-years-and-the-devaluation-of-life-with-a-disability/
[2] House E&C Committee, https://energycommerce.house.gov/posts/chairs-rodgers-smith-and-reps-burgess-wenstrup-introduce-legislation-to-ban-qal-ys
[3] Open Letter, https://files.constantcontact.com/e7a90be4701/2e199106-a152-4598-838b-1b08dce510c2.pdf
[4] Bipartisan Joint Opinion, Roll Call, see https://rollcall.com/2026/01/15/congress-should-ban-metric-that-devalues-people-with-disabilities/
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