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Patient Care Extends Beyond the Clinic

NPF advocacy events like Capitol Hill Day connect the medical community and patient advocates in a shared effort to bring about positive, substantive change in access to care.

Supporting our scientific and medical community with the funding and information needed to carry out transformative psoriatic disease research is one piece of the NPF pie. We also know that the medical breakthroughs of today can only work to make a difference tomorrow when a patient can access the care and treatment they need.

That is why advocacy is so important. We want the work you are doing in the office or lab to be as effective as possible, so with your help, we make sure issues like step therapy reform and manageable health care costs are being discussed with policymakers.

Through NPF advocacy events, NPF makes sure that the psoriatic disease community is heard in lawmaker offices at the state and federal level. One key example for federal advocacy is the annual NPF Capitol Hill Day, where patient volunteers, researchers, health care providers and the NPF advocacy team convene in Washington D.C. to meet with elected officials about the issues affecting our community. While the 2021 event has gone virtual, the importance of bringing the medical perspective is as important as ever before.

On April 20 and 21, we will present key asks to Congress, ranging from establishing an out-of-pocket maximum for Medicare Part D to championing the Safe Step Act – which looks to bring commonsense guardrails and transparency to step therapy.

The advocacy work of NPF patients, providers and researchers goes beyond Capitol Hill. When members of Congress leave D.C. during August recess, advocates can visit them “in district” for meetings close to home. NPF advocacy also occurs at the state level, where over two dozen states have passed step therapy protections that mirror the federal Safe Step Act and researchers and providers can play a role locally.

“Experts in the medical community provide the necessary background, clinical context and expert testimony that is coupled with compelling patient stories to present lawmakers with the strongest cases for the needed changes in accessing affordable, comprehensive health care,” says board-certified dermatologist Seemal R. Desai, M.D., FAAD who is the Founder and Medical Director of Innovative Dermatology and Clinical Assistant Professor of Dermatology at the University of Texas Southwestern in Dallas, Texas. “By engaging with lawmakers and federal agencies like the CDC and FDA, providers and researchers can make sure that patient-focused outcomes are incorporated in public health research and drug development.”

Pediatric dermatologist Lara Wine Lee, M.D., of the Medical University of South Carolina, says that providing her time and expertise to advocacy work is an important extension of her care to patients. “My role in caring for patients does not start and stop at my office door,” she says. “If I’m going to provide patients with the best care available, that also means working to improve access and affordability of the treatments they need.”

Lisa M. Arkin, M.D., at the University of Wisconsin-Madison, first got her start with NPF advocacy in Madison, Wisconsin, advocating for step therapy protections. That year, thanks to her help, Wisconsin passed what is now Act 12. Dr. Arkin has continued her advocacy work, with a determination to bring the same protections to more patients through the Safe Step Act. She says that working on legislative issues that impact patients helps fuel her passion for her own work.

“Advocacy takes the passion I have for my patients beyond the clinic. As providers, we have a unique opportunity to show lawmakers how the policies they are considering can impact their constituents: our patients,” says Arkin. “Standing side-by-side with our community as they share their stories helps motivate me and also helps to improve the chances that people can access the treatments we work so hard to develop and prescribe.”


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