Federal Advocacy

What We're Doing at the Federal Level

The NPF advocacy team and its volunteers engage our policymakers on the issues that matter most to those with psoriasis and psoriatic arthritis.

 
Photograph of the capital building.

Decades ago, the National Psoriasis Foundation (NPF) appeared before Congress and federal agencies to speak on behalf of a community that was just beginning to find its voice: people with psoriasis and psoriatic arthritis.

Today, the NPF advocacy team and its volunteer advocates engage our elected representatives and policymakers on the issues that matter most to our community: health insurance, increased funding for research, new drug approvals, removing barriers to care, the challenges of living with psoriatic disease, and the disabilities that can result if individuals living with the disease do not have access to safe, effective, affordable treatments.

Below are some of our current priorities.

Access to Comprehensive Health Coverage

Patient Protections in Insurance Markets

We advocate for key patient protections in insurance markets, such as essential health benefits, coverage for pre-existing conditions, and bans on annual and lifetime limits through our work both independently as well as working with federal coalitions.

One example of our work: NPF advocates against the use of short-term, limited-duration health care plans that often do not cover all essential health benefits and can deny coverage for pre-existing conditions.

Medicare

NPF works to ensure that protected classes of patients retain their Medicare coverage. We also respond to yearly rule-making guidance in Medicare that updates Medicare prescription drug coverage, reimbursement, and other issues.

Federal Step Therapy Reform

Step therapy is a health insurance practice that requires patients to fail on one or more medications before the insurer will approve the therapy originally prescribed by their health care provider. Step therapy can lead to delays in care, increased disease activity and possibly irreversible disease progression.

NPF leads a coalition of patient and provider advocacy groups that advocate for federal step therapy reform. Our bill, the Safe Step Act, has been introduced for consideration in both the House and Senate. The Safe Step Act seeks to permanently implement step therapy protections by ensuring patient safety and transparency for both patients and health care providers. This bipartisan legislation does not ban step therapy. Instead, the bill puts guardrails in place to ensure that the patient receives the most medically appropriate treatment.

Research and Public Health

In 2009, we were pleased to work with members of Congress to secure funding for the development of a public health agenda by the Centers for Disease Control and Prevention. That document, which was published in 2013, outlines current gaps in and priority areas for public health research for our community.

Since the agenda’s publication, we have actively advocated with Congress to dedicate additional funds to close the gaps research funding and foster a more robust public health research portfolio for psoriatic disease. In 2019, a bipartisan group of 54 representatives and 17 senators supported our request.

NPF continues to work with federal agencies and Congress to promote psoriatic disease research alongside NPF funded projects.

Out-of-Pocket Costs

Many people with psoriatic disease require high-cost treatments to control their medical conditions. Many of these treatments can expose people to high cost-sharing – making the treatments unaffordable.

We support reining in and limiting the maximum co-insurance, out-of-pocket expenses, and deductibles for people with psoriasis and psoriatic arthritis to give them affordable access to their medications. This includes prescription drug costs in general and also reform of Medicare Part D.

Insurance Barriers to Care

NPF supports the use of copay assistance programs and their ability to limit health care expenses and other insurance barriers. One issue we focus on in this area is the use of copay accumulators by insurance plans. In 2020, the Centers for Medicare and Medicaid Services finalized guidance that allows employers and exchange plan insurers to exclude manufacturer coupons from counting toward out-of-pocket maximums for all drugs, whether there is a generic version available or not. NPF joined the All Copays Count Coalition in expressing concern over this new rule.

Prescription Drug Costs

People with psoriatic disease rely on specialty-tier medications to control their condition and associated comorbidities, but high out-of-pocket costs often prevent them from filling their prescription. Prescription drug costs were a huge focus of proposed legislation in Congress in 2019 and a priority for the current administration.

Medicare Part D Reform

A 2019 NPF survey of people with psoriatic disease found that more than four in ten Medicare beneficiaries experience financial strain due to the cost of their biologic treatment.

Currently, Medicare Part D is one of the only health plans without an out-of-pocket maximum. Capping out-of-pocket costs for Medicare Part D would reduce the patients’ financial burden and help them adhere to critical treatments. NPF supports legislative efforts to cap annual out-of-pocket costs while also addressing extraordinary up-front costs in Medicare Part D by spreading the costs across the benefit year.

Learn More in Our Letter Archive

Visit our letter archive for recent NPF comments on federal policies.

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