Color of Gastrointestinal Illnesses (COGI) sent a letter to the Florida House and Senate expressing concerns about a pair of bills that would import discriminatory value assessment metrics.
Dear Rep. Jonsson, Rep. Hinson, Sen. Grall and Sen. Bradley:
We are writing on behalf of Color of Gastrointestinal Illnesses (COGI) and as a Florida constituent to urge the Florda legislature to oppose HB697 and SB1158, the Prescription Reduction Incentives and Competition Enhancement Act. COGI represents communities affected by inflammatory bowel disease (IBD), digestive disorders, gastrointestinal cancer and associated chronic illnesses and who experience health disparities due to health system failures.
COGI was founded based on lived experiences. As patients with Crohn’s disease, we have each endured years of delayed diagnosis, treatment denials, and forced medication cycling before finding therapies that allowed us to regain stability and quality of life. One of us began experiencing symptoms at age 13 and was not diagnosed for nearly 30 years, cycling through 16 medications before finally accessing an advanced therapy in 2023. The other experienced symptoms at age 17 and was not diagnosed until age 32, after more than a decade of untreated disease that led to severe complications, multiple bowel resections, disability, and extended hospitalizations. In both cases, delayed diagnosis and delayed access to appropriate therapy resulted in permanent health consequences. Finding a treatment that works, and being allowed to maintain access to it, has changed our lives for the better.
To achieve optimal health outcomes, policymakers must consider how their actions may unintentionally create more barriers for patients to access treatments. Due to the historic misconception that people of color are not impacted by IBD, it often takes far too long for patients in our community to receive an accurate diagnosis. Given this delay, it is essential that once we are diagnosed, we are able to quickly and efficiently access the medications we need — additional delays only enhance the disparities in care that patients already face.
Therefore, we have real concerns that this policy referencing international prices may lead to Florida patients experiencing the same care denials and delays that are seen in other countries. Other countries treat less effective and older drugs as therapeutic alternatives, despite evidence that shows they are not necessarily interchangeable for patients in the real world. Patients with Crohn’s disease are often forced to cycle through many treatments before finding the one that works for them. The experience of patients in other countries should be a warning not to model their systems of health care.[1] [2] [3]
The proposed legislation would import foreign reliance on quality-adjusted life years (QALYs) and similar measures known to devalue people with disabilities and serious chronic conditions. It is widely understood that QALYs and measures devalue people living with disabilities and chronic conditions as part of the formula or “math” used to calculate cost effectiveness.[4] Yet these are the studies used in other countries to ration health care against people with disabilities and serious chronic conditions. [5] In light of the implications for devaluing disabled lives, the National Council on Disability, an independent federal agency advising policymakers on disability policy, has recommended avoiding QALYs and similar measures in decisions related to coverage and reimbursement, including by avoiding reference to prices in other countries.[6]
We appreciate your consideration of our concerns and hope that this bill will not advance. We urge state policymakers to focus their work on addressing the egregious use of utilization management and adverse formulary placement of certain drugs by payers that is at the heart of affordability and access challenges for patients. America should not model its health systems on those of foreign nations that do not value care for people living with disabilities and serious chronic conditions.
Sincerely,
Melodie C. Narain-Blackwell
President & Founder
Color of Gastrointestinal Illnesses (COGI)
Kristie Hill
3714 NW 5th Blvd. Apt. 106
Gainesville, FL 32607
[1] NHS Can’s Keep me Alive, https://urlisolation.com/browser?clickId=40ACFB1B-C01F-4DA5-B81A-521FF512C561&traceToken=1768663684%3Bphrma_2_hosted%3Bhttps%3A%2Fwww.mirror.co.uk%2Fnews%2Fhea&url=https%3A%2F%2Fwww.mirror.co.uk%2Fnews%2Fhealth%2Fnhs-cant-keep-alive-son-35582859
[2] Canada, https://urlisolation.com/browser?clickId=3C0D25B4-4498-4681-BD61-BAAC1AEDCFB1&traceToken=1768664055%3Bphrma_2_hosted%3Bhttps%3A%2Fwww.cbc.ca%2Fnews%2Fcanada%2Fsa&url=https%3A%2F%2Fwww.cbc.ca%2Fnews%2Fcanada%2Fsaskatoon%2Fbiologic-pharmaceutical-drugs-medications-biosimilars-patients-1.6721293
[3] New Zealand, https://urlisolation.com/browser?clickId=A6277C7A-5C21-4FCD-95D0-20E968E1F859&traceToken=1768663924%3Bphrma_2_hosted%3Bhttps%3A%2Fwww.rnz.co.nz%2Fnews%2Fnation&url=https%3A%2F%2Fwww.rnz.co.nz%2Fnews%2Fnational%2F536416%2Fkiwis-call-for-wider-access-of-newly-funded-cancer-drug
[4] Browne J PhD, Cryer DR JD, Stevens W PhD. Is the QALY Fit for Purpose? [Internet]. AJMC; 2021 Jul 13; Available from: https://www.ajmc.com/view/is-the-qaly-fit-for-purpose-
[5] Undark, Is the Medication You’re Taking Worth Its Price?, January 27, 2020. https://undark.org/2020/01/27/medicine-qaly/
[6] National Council on Disability. Quality-Adjusted Life Years and the Devaluation of Life with Disability [Internet]. National Council on Disability; 2019 Nov. Available from: https://www.ncd.gov/assets/uploads/reports/2019/ncd_quality_adjusted_life_report_508.pdf
We are writing on behalf of Color of Gastrointestinal Illnesses (COGI) and as a Florida constituent to urge the Florda legislature to oppose HB697 and SB1158, the Prescription Reduction Incentives and Competition Enhancement Act. COGI represents communities affected by inflammatory bowel disease (IBD), digestive disorders, gastrointestinal cancer and associated chronic illnesses and who experience health disparities due to health system failures.
COGI was founded based on lived experiences. As patients with Crohn’s disease, we have each endured years of delayed diagnosis, treatment denials, and forced medication cycling before finding therapies that allowed us to regain stability and quality of life. One of us began experiencing symptoms at age 13 and was not diagnosed for nearly 30 years, cycling through 16 medications before finally accessing an advanced therapy in 2023. The other experienced symptoms at age 17 and was not diagnosed until age 32, after more than a decade of untreated disease that led to severe complications, multiple bowel resections, disability, and extended hospitalizations. In both cases, delayed diagnosis and delayed access to appropriate therapy resulted in permanent health consequences. Finding a treatment that works, and being allowed to maintain access to it, has changed our lives for the better.
To achieve optimal health outcomes, policymakers must consider how their actions may unintentionally create more barriers for patients to access treatments. Due to the historic misconception that people of color are not impacted by IBD, it often takes far too long for patients in our community to receive an accurate diagnosis. Given this delay, it is essential that once we are diagnosed, we are able to quickly and efficiently access the medications we need — additional delays only enhance the disparities in care that patients already face.
Therefore, we have real concerns that this policy referencing international prices may lead to Florida patients experiencing the same care denials and delays that are seen in other countries. Other countries treat less effective and older drugs as therapeutic alternatives, despite evidence that shows they are not necessarily interchangeable for patients in the real world. Patients with Crohn’s disease are often forced to cycle through many treatments before finding the one that works for them. The experience of patients in other countries should be a warning not to model their systems of health care.[1] [2] [3]
The proposed legislation would import foreign reliance on quality-adjusted life years (QALYs) and similar measures known to devalue people with disabilities and serious chronic conditions. It is widely understood that QALYs and measures devalue people living with disabilities and chronic conditions as part of the formula or “math” used to calculate cost effectiveness.[4] Yet these are the studies used in other countries to ration health care against people with disabilities and serious chronic conditions. [5] In light of the implications for devaluing disabled lives, the National Council on Disability, an independent federal agency advising policymakers on disability policy, has recommended avoiding QALYs and similar measures in decisions related to coverage and reimbursement, including by avoiding reference to prices in other countries.[6]
We appreciate your consideration of our concerns and hope that this bill will not advance. We urge state policymakers to focus their work on addressing the egregious use of utilization management and adverse formulary placement of certain drugs by payers that is at the heart of affordability and access challenges for patients. America should not model its health systems on those of foreign nations that do not value care for people living with disabilities and serious chronic conditions.
Sincerely,
Melodie C. Narain-Blackwell
President & Founder
Color of Gastrointestinal Illnesses (COGI)
Kristie Hill
3714 NW 5th Blvd. Apt. 106
Gainesville, FL 32607
[1] NHS Can’s Keep me Alive, https://urlisolation.com/browser?clickId=40ACFB1B-C01F-4DA5-B81A-521FF512C561&traceToken=1768663684%3Bphrma_2_hosted%3Bhttps%3A%2Fwww.mirror.co.uk%2Fnews%2Fhea&url=https%3A%2F%2Fwww.mirror.co.uk%2Fnews%2Fhealth%2Fnhs-cant-keep-alive-son-35582859
[2] Canada, https://urlisolation.com/browser?clickId=3C0D25B4-4498-4681-BD61-BAAC1AEDCFB1&traceToken=1768664055%3Bphrma_2_hosted%3Bhttps%3A%2Fwww.cbc.ca%2Fnews%2Fcanada%2Fsa&url=https%3A%2F%2Fwww.cbc.ca%2Fnews%2Fcanada%2Fsaskatoon%2Fbiologic-pharmaceutical-drugs-medications-biosimilars-patients-1.6721293
[3] New Zealand, https://urlisolation.com/browser?clickId=A6277C7A-5C21-4FCD-95D0-20E968E1F859&traceToken=1768663924%3Bphrma_2_hosted%3Bhttps%3A%2Fwww.rnz.co.nz%2Fnews%2Fnation&url=https%3A%2F%2Fwww.rnz.co.nz%2Fnews%2Fnational%2F536416%2Fkiwis-call-for-wider-access-of-newly-funded-cancer-drug
[4] Browne J PhD, Cryer DR JD, Stevens W PhD. Is the QALY Fit for Purpose? [Internet]. AJMC; 2021 Jul 13; Available from: https://www.ajmc.com/view/is-the-qaly-fit-for-purpose-
[5] Undark, Is the Medication You’re Taking Worth Its Price?, January 27, 2020. https://undark.org/2020/01/27/medicine-qaly/
[6] National Council on Disability. Quality-Adjusted Life Years and the Devaluation of Life with Disability [Internet]. National Council on Disability; 2019 Nov. Available from: https://www.ncd.gov/assets/uploads/reports/2019/ncd_quality_adjusted_life_report_508.pdf
| cogi_florida_bills.pdf |
