The Color of Gastrointestinal Illnesses (COGI) recently penned a letter to Maryland Prescription Drug Affordability Board (PDAB) Director Andrew York that outlines concerns with the Board’s ongoing cost review activities.
The letter highlights that the Board has not provided "assurances that setting Upper Payment Limits (UPL) will not impact patient access to care, that the affordability review process will not rely on value assessment measures known to discriminate against people with disabilities and serious chronic conditions such as quality-adjusted life years (QALYs) and similar measures, nor that there is a process to handle unintended consequences for patients in a timely and efficient manner.” COGI also highlighted that the NAACP recently passed a resolution as part of its 116th Convention calling on policymakers to reject determinations of care that are based on QALYs, underscoring the implications on health equity.
"As we have stated in letters and opinions, attached, we continue to have deep concerns about the Prescription Drug Affordability Board’s (PDAB) process and potential for unintended outcomes," wrote Melodie Narain-Blackwell, President & Founder of COGI. "It has been troubling that the PDAB is unresponsive to the concerns of patients and people with disabilities."
The letter in its entirety can be read below:
"As we have stated in letters and opinions, attached, we continue to have deep concerns about the Prescription Drug Affordability Board’s (PDAB) process and potential for unintended outcomes," wrote Melodie Narain-Blackwell, President & Founder of COGI. "It has been troubling that the PDAB is unresponsive to the concerns of patients and people with disabilities."
The letter in its entirety can be read below:
Dear Mr. York:
I am again writing on behalf of the Color of Gastrointestinal Illness (COGI) to comment on the Board’s ongoing cost review activities. COGI represents black, indigenous and other people of color (BIPOC) who are affected by inflammatory bowel disease (IBD), digestive disorders, gastrointestinal cancer and associated chronic illnesses. As we have stated in letters and opinions, attached, we continue to have deep concerns about the Prescription Drug Affordability Board’s (PDAB) process and potential for unintended outcomes.
It has been troubling that the PDAB is unresponsive to the concerns of patients and people with disabilities. To date, we have received no assurances that setting Upper Payment Limits (UPL) will not impact patient access to care, that the affordability review process will not rely on value assessment measures known to discriminate against people with disabilities and serious chronic conditions such as quality-adjusted life years (QALYs) and similar measures, nor that there is a process to handle unintended consequences for patients in a timely and efficient manner. The affordability challenges we face are all too often associated with formulary placement and utilization management that lead patients to experience delays in receiving personalized care. We were very pleased that the NAACP recently passed a resolution as part of its 116th Convention calling on policymakers to reject determinations of care that are based on QALYs, underscoring the implications on health equity that the National Council on Disability and others have been raising consistently for many years.1
COGI recently wrapped up its own 5th annual Equity in GI conference, where patients shared their stories. We learned from their stories that what academics may think of as a therapeutic alternative is often not really an alternative for a real-world patient. Patients respond differently to the same medications and often need a particular medication or treatment that uniquely works for them. Forcing patients to take a medication that will fail them before they can access the medication that will optimize their health should not be the goal. If the Board’s process exacerbates how payers prefer certain medications and impose barriers to care, whether by preferring the drug selected for a UPL or a so-called therapeutic alternative, we fear the outcome may be fewer options and higher out-of-pocket costs for patients.
Attached are the prior letters we have shared on this issue, as well as an opinion piece that I drafted for Maryland Matters. I hope that the Board will prioritize avoiding use of discriminatory value assessments and advance policies that assure us as patients of a meaningful and enforceable process for addressing any resulting barriers to care in a timely manner.
Thank you for your consideration.
I am again writing on behalf of the Color of Gastrointestinal Illness (COGI) to comment on the Board’s ongoing cost review activities. COGI represents black, indigenous and other people of color (BIPOC) who are affected by inflammatory bowel disease (IBD), digestive disorders, gastrointestinal cancer and associated chronic illnesses. As we have stated in letters and opinions, attached, we continue to have deep concerns about the Prescription Drug Affordability Board’s (PDAB) process and potential for unintended outcomes.
It has been troubling that the PDAB is unresponsive to the concerns of patients and people with disabilities. To date, we have received no assurances that setting Upper Payment Limits (UPL) will not impact patient access to care, that the affordability review process will not rely on value assessment measures known to discriminate against people with disabilities and serious chronic conditions such as quality-adjusted life years (QALYs) and similar measures, nor that there is a process to handle unintended consequences for patients in a timely and efficient manner. The affordability challenges we face are all too often associated with formulary placement and utilization management that lead patients to experience delays in receiving personalized care. We were very pleased that the NAACP recently passed a resolution as part of its 116th Convention calling on policymakers to reject determinations of care that are based on QALYs, underscoring the implications on health equity that the National Council on Disability and others have been raising consistently for many years.1
COGI recently wrapped up its own 5th annual Equity in GI conference, where patients shared their stories. We learned from their stories that what academics may think of as a therapeutic alternative is often not really an alternative for a real-world patient. Patients respond differently to the same medications and often need a particular medication or treatment that uniquely works for them. Forcing patients to take a medication that will fail them before they can access the medication that will optimize their health should not be the goal. If the Board’s process exacerbates how payers prefer certain medications and impose barriers to care, whether by preferring the drug selected for a UPL or a so-called therapeutic alternative, we fear the outcome may be fewer options and higher out-of-pocket costs for patients.
Attached are the prior letters we have shared on this issue, as well as an opinion piece that I drafted for Maryland Matters. I hope that the Board will prioritize avoiding use of discriminatory value assessments and advance policies that assure us as patients of a meaningful and enforceable process for addressing any resulting barriers to care in a timely manner.
Thank you for your consideration.
| cogi_md_pdab_letter_july_2025_.pdf |
