NPF For Legislators

Thank you for meeting with advocates from the National Psoriasis Foundation. We appreciate your time! As discussed, we hope your office will:

  1. Provide $6 million for the CDC Chronic Disease Education and Awareness Program, as well as report language on psoriatic disease, in fiscal year 2025.
    House offices: Please join a sign-on letter led by Representatives John Joyce (R-PA-13), and Debbie Wasserman Schultz (D-FL-25).
  2. Cosponsor HR 2630/S 652, the Safe Step Act, and pass it in PBM reform
  3. Cosponsor HR 830/S 1375, the HELP Copays Act

For more information on NPFs 2024 legislative asks, please contact Sarah Buchanan at sbuchanan@psoriasis.org. In addition, below are brief summaries of each ask.

1. FY 25 Psoriatic Disease Appropriations

Psoriatic disease poses a significant public health burden. These chronic conditions include psoriasis and psoriatic arthritis, and affect over 8 million Americans. People living with psoriatic disease are more likely to develop co-occurring conditions such as diabetes, heart disease, depression, and anxiety. Unfortunately, despite treatment advances, many people living with psoriatic disease experience delays in diagnosis and are undertreated. 

In 2013, the Centers for Disease Control and Prevention (CDC) published a psoriatic disease public health agenda. In 2020, Congress created the CDC Chronic Disease Education and Awareness (CDEA) Program which enabled CDC to support work on psoriatic disease.

While the CDEA has made progress on psoriatic disease, more needs to be done. For example, updated survey instruments present the opportunity to analyze and promulgate new data. The CDEA also piloted interventions that are ready to be scaled, particularly in rural communities and those underdiagnosed. NPF encourages members of Congress to include in their fiscal year 2025 appropriations requests:

  • $6 million for the CDC Chronic Disease Education and Awareness Program (CDEA)
  • Report language supporting psoriatic disease public health activities

We also ask house offices to join the Joyce (R-OH-13)/Wasserman Schultz (D-FL-25) appropriations letter.

Key links:

2. Cosponsor HR 2630/S 652, the Safe Step Act

Insurance-mandated step therapy is when a health plan requires patients to try and fail one or more insurer-preferred treatments before the plan will cover the treatment originally selected by the patient and their provider. Also known as “fail first,” these protocols can delay needed treatment and lead to severe or irreversible health outcomes.

The Safe Step Act is based on legislation that has passed in 36 states and would:

  • Ensure employer plans offer a step therapy exceptions process to patients and providers
  • Establish circumstances when a step therapy exception should be granted
  • Require plans to respond to an exceptions request within 24-72 hours

The Senate HELP Committee included the Safe Step Act in S 1339, the Pharmacy Benefit Manager (PBM) Reform Act. The Safe Step Act is the only patient- and provider-driven bill under consideration in the PBM reform package. Congress must include it to ensure that PBM reform extends directly to patients.

The NPF encourages all members of Congress to cosponsor the Safe Step Act, and to work with leadership to include the Safe Step Act in the final PBM reform package

 Key links:

3. Cosponsor HR 830/S 1375, the HELP Copays Act

Copay accumulator adjustment programs are utilization management protocols in which insurers accept third-party copay assistance for a plan member’s prescription without counting that assistance towards the plan member’s cost-sharing obligations (i.e., deductible and out-of-pocket maximum).

A 2020 NPF survey found that 65.4% of people with psoriatic disease could not afford their treatment without copay assistance. This is because deductibles and out-of-pocket maximums are high and difficult for many to afford year after year.

HR 830/S 1375, the HELP Copays Act is based on legislation that has passed in 19 states and would:

  • Ensure that copay assistance is counted towards a patient’s cost-sharing obligations, including their deductible and out-of-pocket maximum
  • Close the “essential health benefit loophole” which would prevent similar schemes in the future

The NPF encourages legislators to cosponsor HR 830/S 1375, the HELP Copays Act.

Key links:

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