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Due to Stakeholder Engagement Barriers, Many Patient, Community and Industry Groups Express Multiple Concerns Over Oregon Prescription Drug Board's Approach (Photo) - 06/21/24

(Note to editors and reporters: The full media kit can be found here - https://drive.google.com/drive/folders/1IUUwmx9odio5dMvIsKllZLkTUloQSOhf?usp=sharing) 

FOR IMMEDIATE RELEASE - Friday June 21, 2024 

CONTACT: Dianne Danowski Smith, info@answer2cancer.org (503-201-7019)  

Due to Stakeholder Engagement Barriers, Many Patient, Community and Industry Groups Express Multiple Concerns Over Oregon Prescription Drug Board’s Approach 

PORTLAND, OREGON – A group of community-based disease and patient health organizations have come together to share their concerns about the Oregon Prescription Drug Affordability Board’s (PDAB) direction and work plan to create meaningful impact in lowering the cost of prescription drugs or improving patient access. These organizations, who work on behalf of people living with challenging, chronic and sometimes life-changing health conditions including disabilities and chronic health issues, call for the PDAB to increase incorporation of patient input, experiences, and voices in their decision making. 

The groups have come together to highlight Oregon board’s lack of clinical expert review, equitable board representation, engagement opportunities, transparency of deliberations, emphasis on patient experience in affordability reviews, and more. 

Fourteen patient and health organizations, community groups, and many patients, together submitted a letter last December to Oregon’s PDAB expressing worries about board’s processes (here, see pages 19-21).  Now additional groups have enjoined their concerns to Oregon PDAB’s strategy. 

The concerns highlight Oregon board’s lack of clinical expert review, equitable board representation, engagement opportunities, transparency of deliberations and emphasis on patient experience in affordability reviews. 

“Nowhere in the data currently being provided for its deliberations is there any way for the PDAB to know that its work will reduce patients’ out-of-pocket costs for their needed medications and therapies,” said Lorren Sandt, executive director of Caring Ambassadors. 

Feedback from patients, families, caregivers, advocates, medical professionals and health organizations is crucial to fix Oregon’s PDAB process. Those interested can click here now to participate:  https://dfr.oregon.gov/pdab/Pages/public-comment.aspx. 

Marcia Horn, President and CEO of ICAN, International Cancer Advocacy Network, stressed that, “It’s imperative that the voices of patients and advocates are heard and respected in these critical discussions about the true mechanisms and impact of drug pricing.”  

The groups working together on this important issue include ALS Northwest, Answer2Cancer Inc., Caring Ambassadors Program, Chronic Disease Coalition, Cystic Fibrosis Research Institute, Disability Rights Oregon, Eastern Oregon Center for Independent Living, HIV Alliance, International Cancer Advocacy Network (ICAN), National Bleeding Disorders Foundation, National Psoriasis Foundation, Oregon Bioscience Association, Pacific Northwest Bleeding Disorders, Partnership to Improve Patient Care, Project Access Northwest, Project Access NOW, The Community for Positive Aging, Biomarker Collective, MET Crusaders, Exon 20 Group and PDL1 Amplifieds. 

The community-based advocates are deeply concerned that the Oregon PDAB has no representation of patients or people with disabilities on the board and no stakeholder advisory council or approach. They are also worried about the absence of a formal and specific mechanism for patient and provider engagement in the affordability reviews. In their own regulations, the PDAB board highlighted the need for gathering a diversity of experience among patients from different socioeconomic backgrounds, but to date, they have done nothing to engage diverse communities in the affordability review process or even attempt to solicit input from those who have lived experience with the drugs they selected. 

Many health organizations and patients who have spoken out believe the board needs to create opportunities for genuine stakeholder engagement in the affordability reviews, not just public comment. The only available option for patients is a virtual portal that requires them to answer fourteen questions about their affiliations before being able to provide a letter or 1-3 minutes of comments during the monthly meeting, held in the middle of the workday. This lack of direct patient engagement is starkly different from other states' PDAB operations, such as Washington state's PDAB, where stakeholder and patient inclusion is a specified key priority.  

Sandt emphasized the urgency for immediate action. “We have been told if we want an advisory board, the legislation needs to be fixed. We can’t wait for the 2025 legislative session because in the meantime, the Board will review ten more drugs.” 

Said Madonna McGuire Smith, “As community-oriented and patient-led organizations that assist and support patients, we are all united in our deep concern about the cost of prescription drugs, but the Oregon prescription board’s lack of adequate representation, engagement and transparency with the public is troublesome. It’s imperative that the voices of patients and advocates are heard and respected in these critical discussions being had about the true mechanisms and impact of drug pricing.” McGuire Smith is executive director of the Pacific Northwest Bleeding Disorders.  

“Without meaningful involvement from those directly impacted, the board’s decisions may fail to address the real-world challenges faced by Oregonians. We call on the board to prioritize inclusivity and transparency to ensure that the needs of the communities we represent are met effectively,” added McGuire Smith. 

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This news release and other advocate letters can be found here - https://drive.google.com/drive/folders/1IUUwmx9odio5dMvIsKllZLkTUloQSOhf?usp=sharing.  #oregon #healthcare #pdab #mymedsmychoice #mymedsmyvoice

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