Value Frameworks

Assessing the Value of Therapies

Bringing Patient Insights, Preferences, and Priorities into the Process

NPF Advocacy

When the National Psoriasis Foundation was founded in 1967, individuals living with chronic conditions including psoriasis and psoriatic arthritis had few options to effectively manage their disease. Fortunately, over the last few decades, scientific advancements have led to the development of many life saving and life altering therapies. The psoriatic disease community is one community that has benefited from this progress. Today, individuals with psoriasis and psoriatic arthritis at all levels of disease severity have numerous safe and effective choices to manage their disease.

NPF Leads in Bringing the Patient Voice into Discussions of Value

NPF is one of a handful of patient organizations leading the cry that any efforts which calculate value must consider what is truly meaningful to individuals living with these diseases. Patient insights, preferences, and priorities must be more than background contextual considerations. They must be data inputs in value calculations. Just as we have made significant improvement in engaging patients in drug development, we must also engage the patient community in this work. Only then will value assessment lead to improved patient health outcomes. In the last several years, NPF has been at the forefront of bringing this message to value modelers by participating in two Institute for Clinical and Economic Review (ICER) value assessments for psoriasis therapies (in 2016 and 2018), to health insurers and pharmacy benefit managers via five years of payer roundtables and numerous individual dialogues, and to academics and others engaged in expanding the role of value assessment through collaborations, partnerships, and summit dialogues.

In 2019, NPF’s Chief Operating Officer, Leah Howard J.D., presented at a National Health Council conference on the Foundation’s work in this area. During the meeting she offered insights on how the Foundation has approached this work.

On the Record

When in 2016 ICER announced plans to view eight psoriasis therapies, NPF put years of advocacy and government relations regulation comment writing to good use! Over the next several months, NPF dialogued with ICER and submitted comment letters addressing key areas of concern. Ultimately, ICER concluded that all eight of the reviewed systemic treatments were “of good value” and recommended that insurers expand access to these treatments. This was a great result for our community! When in 2018 ICER conducted a psoriasis condition update, NPF again sprung in to action.

Some of the comment letters submitted during these efforts is found below.

New: NPF Comments on ICER Proposed Updates to 2020 Value Assessment Framework Methods and Procedures

10/18/2019

Oral Remarks Offered by Leah Howard J.D., NPF Chief Operating Officer, During July 12, 2018 ICER Meeting

7/12/2018

National Psoriasis Foundation Comment Letter to ICER on Psoriasis Condition Update Draft Evidence Report

5/25/2018

Avalere Formulary Analysis of Systemic Psoriasis Therapies Across Multiple Markets

2015 - 2017

NPF COO Leah Howard Comments on Engaging in Value Assessments

During a May 23rd panel on Defining Value as part of The Atlantic’s The State of Care: Patient Access & Affordability event.

Further Reading

12/22/2017 - National Psoriasis Foundation Comment Letter to ICER on the Psoriasis Condition Update Read more

1/4/2017 - ICER Blog on Including the Patient Perspective Focuses on the Work of the National Psoriasis Foundation to Inform the Recent ICER Asessment of Psoriasis Therapies Read more

12/5/2016 - Leah Howard, NPF’s Chief Operating Officer, provides an overview of the Final Report and Meeting Summary, and answered questions on the significance of the report findings and policy recommendations, and what comes next. Read more

10/27/2016 - Q&A with National Psoriasis Foundation’s Chief Operating Officer on why ICER decided to target psoriatic disease treatments, why value frameworks matter to patients, and more. Read more

9/29/2016 - National Psoriasis Foundation’s Official Response to ICER’s Draft Evidence Report on Treatments for Psoriasis Read more

7/8/2016 - National Psoriasis Foundation Response to ICER’s Draft Scoping Document on the Psoriasis Review Read more

1/17/2016 - National Psoriasis Foundation’s Summary of Concerns Raised at the Outset of the Review Read more

9/12/2016 - National Psoriasis Foundation’s Response to ICER’s Open Call for Feedback on the Value Framework Model Read more

8/1/2016 - National Psoriasis Foundation’s summary of comments on a possible joint Rheumatoid Arthritis and Psoriatic Arthritis review. ICER elected after public comments were received to move forward with a Rheumatoid Arthritis review only. Read more

Check back here frequently for updates and additional information about NPF’s value assessment efforts. To discuss this issue with NPF staff, please email Leah Howard, Chief Operating Officer.

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