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Timeline: Modern Advocacy Efforts of NPF

A look at the evolution of working for access to care and treatment for people with psoriatic disease.

2004

MAY 16: The National Psoriasis Foundation (NPF) launches its inaugural Capitol Hill Day.

George W. Bush was in the Oval Office as the volunteers and staff of NPF descended on Washington, D.C., for the first Capitol Hill Day. It has since become an annual event that has grown tremendously in its scope and impact. Some key NPF advocates like Mike Kammer and Rick Seiden have taken part in more than a decade’s worth of Capitol Hill Days.

“In the earliest days of my advocacy, in 2004, it seemed to me that our primary goal was to raise awareness of psoriatic disease in Congress,” Seiden says.

2007

FEB. 16: The Psoriasis and Psoriatic Arthritis Research, Cure, and Care Act of 2007 is introduced in the U.S. House of Representatives by Rep. David Wu, D-Ore.

This milestone piece of legislation, commonly referred to as PPARCCA (“parka”), had 82 cosponsors. It focused on calling attention to the severity of psoriasis and psoriatic arthritis (PsA) while providing the research funding necessary to find a cure. This disease-specific legislation would be brought before the U.S. House and Senate many times over the next five years.

MAY 23: The Psoriasis and Psoriatic Arthritis Research, Cure, and Care Act of 2007 is introduced in the U.S. Senate by Sen. Robert Menendez, D-N.J., with 15 cosponsors.

2009

FEB. 10: The Psoriasis and Psoriatic Arthritis Research, Cure, and Care Act of 2009 is reintroduced in the U.S. House by Rep. David Wu, this time with 117 cosponsors.

MARCH 11: The Psoriasis and Psoriatic Arthritis Research, Cure, and Care Act of 2009 is reintroduced in the U.S. Senate by Sen. Robert Menendez. This version of the bill has 17 cosponsors.

DECEMBER: Congress passes an omni-bus bill appropriating $1.5 million for psoriasis at the Centers for Disease Control and Prevention (CDC). The House of Representatives Labor, Health and Human Services, Education, and Related Agencies Committee provided funding to support data collection in order to better understand the comorbidities associated with psoriasis, examine the relationship of psoriasis to other public health concerns such as the high rate of smoking and obesity among those with the disease, and gain insight into the long-term impact and treatment of psoriasis and psoriatic arthritis.

“The recent funding is a good start, but we must continue to press for an ongoing commitment from the federal government to support this vital collaborative research,” said Rep. David Wu in a Cision PR Newswire release from Jan. 25, 2010.

2010

MARCH 23: The Affordable Care Act (ACA) is signed into law, establishing new state exchanges for health care and changing the way health care is handled at the federal level.

In early 2010, the CDC received federal appropriations to begin developing a public health agenda addressing the assessment function for psoriasis and psoriatic arthritis.

NIAMS advocates gather outside a meeting.

2011

MAY 26: Back again for one final valiant effort, the Psoriasis and Psoriatic Arthritis Research, Cure, and Care Act of 2011 is reintroduced in the U.S. House by Rep. Jim Gerlach, R-Pa. This time around, the bill has 51 cosponsors.

MAY 26: The Psoriasis and Psoriatic Arthritis Research, Cure, and Care Act of 2011 is reintroduced in the U.S. Senate by Sen. Robert Menendez. It has eight cosponsors.

2013

FEBRUARY: The CDC publishes its Developing and Addressing the Public Health Agenda for Psoriasis and Psoriatic Arthritis report.

2014

JAN. 1: Leah Howard, who at the time served as NPF's vice president of government relations and advocacy, begins a two-year stint as cochair of the National Institute of Arthritis and Musculoskeletal and Skin Diseases coalition, commonly referred to as NIAMS.

JUNE: NPF takes the lead in forming the State Access to Innovative Medicines (SAIM) Coalition. SAIM works at the state level to protect and improve access to care. Patrick Stone, who serves today as NPF’s vice president of government affairs and advocacy, would later serve as chair of the coalition from 2016 to 2018.

OCTOBER: NPF expands advocacy efforts to include a dedicated role for state policy through creation of a state government relations manager position. With passage of the ACA in 2010, NPF moved many advocacy efforts to the statehouses as they played an increasing role in health care availability and access after the creation of state exchanges.

Gov. Inslee signs a bill into law with NPF advocates in the room.

2015

JANUARY-DECEMBER: NPF works with the CDC as the agency develops a professional judgment on psoriatic disease that identifies two high priority areas for public health research: self-management interventions for psoriatic disease ($500,000) and next-level research on psoriatic disease ($1 million).

JAN. 1: NPF president and CEO Randy Beranek serves a one-year term as chair of the board of the National Health Council.

JUNE: Leah Howard, serving as NPF vice president of government relations and advocacy, serves as co-chair of the National Health Council Health Care Reform Action Team until August 2017.

OCTOBER: The Advocacy Action Networks are created. 

Today, NPF has three Advocacy Action Networks in different regions of the United States – East, Central, and West – that meet monthly to discuss advocacy updates and opportunities for members to engage with their elected officials. 

OCT. 8: California step therapy protections are signed into law by Gov. Jerry Brown.

Step therapy is a process by which a patient is required to try and fail insurer-selected medications and treatments before moving on to the one their doctor originally pre-scribed. This “fail first” process puts patients in the challenging position of having to try many ineffective treatments before finally being allowed to access the option their doctor thinks will work best.

NOVEMBER: The Institute for Clinical and Economic Review (ICER) announces plans to review eight psoriasis therapies.

NPF put years of advocacy and government relations experience to good use and engaged with ICER to represent the interests of people with psoriatic disease. When ICER announced plans to review eight psoriasis therapies, NPF dialogued with ICER and submit-ted 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.

2016

JANUARY: NPF and International Dermatology Outcome Measures (IDEOM) partner on first payer round-table in Atlanta, Georgia.

Payers, or insurance companies, write the policies that determine what a person with psoriasis or PsA will pay for treatment and provider visits. NPF works on behalf of our community to try to ensure that costs for psoriatic disease treatments and provider visits are covered by payers. It’s one of many examples of NPF’s collaborative spirit working in the best interests of our patient community.

“One of the things we’ve heard for the last several years is that the more information payers can have as they approach their decision-making process, the better it is in order to develop patient-friendly policies and approaches,” said NPF chief operating officer Leah Howard in a National Health Council video interview.

MARCH 17: The Food and Drug Administration (FDA) holds a patient focused drug development (PFDD) meeting on psoriasis.

To ensure that the FDA understood the experiences of people with psoriasis, NPF conducted significant outreach to our community to make them aware of the opportunity to tell their stories directly to the FDA.

Because of these efforts, this is the largest and most successful of the PFDD meetings to date. NPF and its community owe a debt of gratitude to those volunteers.

MARCH 21: Indiana Gov. Mike Pence signs step therapy protections into law.

MAY 16: Kansas Gov. Sam Brownback signs step therapy protections for Medicaid into law.

JUNE 8: Missouri Gov. Jay Nixon signs step therapy protections into law.

AUG. 12: Illinois Gov. Bruce Rauner signs step therapy legislation into law.

DEC. 31: New York Gov. Andrew Cuomo signs a step therapy bill into law.

Thank you, NPF advocates Todd Bello, Melissa Leeolou, Clarissa Michalak, Frank Doris, Frank Morano and Jim Snedden.

2017

FEB. 10: The District of Columbia passes a copay cap for specialty tier drugs: the Specialty Drug Copayment Limitation Act of 2015. Signed by Mayor Muriel Bowser, the act caps copays at $150 for a 30-day supply of a specialty drug.

FEB. 28: New Mexico Gov. Susana Martinez signs step therapy protections into law.

MARCH 30: West Virginia Gov. Jim Justice signs step therapy protections into law.

APRIL 6: The first federal legislation to protect patients from step therapy is introduced in the U.S. House of Representatives.

Known as the Restoring the Patient’s Voice Act, it was introduced by Rep. Brad Wenstrup, R-Ohio, and Rep. Raul Ruiz, D-Calif. The bill had 88 cosponsors.

MAY 10: Iowa step therapy legislation is signed into law by Gov. Terry Branstad.

Thank you, NPF advocates Cynthia Heaton and Tom “EZ” Goen.

MAY 23: Texas step therapy legislation is signed into law by Gov. Greg Abbott.

Before he could receive the treatment originally prescribed by his health care provider, Michael Wood, a teen-ager at the time, was required by his insurance company to go through a step therapy treatment regimen. This process lasted more than a year, during which Wood experienced lupus-like symptoms due to side effects and significant deterioration of his joints due to his PsA.

In March, Michael had appeared before the Texas Senate Committee on Business & Commerce to testify in support of this step therapy reform legislation.

Thank you, NPF advocates John Earley and Michael and Jodi Wood.

JUNE 2: Colorado step therapy legislation is signed into law by Gov. John Hickenlooper.

NPF advocates gather in Iowa's capitol for a bill signing ceremony.

2018

JAN. 4: Ohio Gov. John Kasich signs step therapy legislation into law.

Columbus, Ohio, area advocate Jason Lichten, M.D., who serves on NPF’s board of directors, and his wife, Rachel, participated in a television interview for NBC’s Columbus affiliate. They shared the moving story of their son’s struggles with psoriasis and step therapy.

Thank you, NPF advocates Jason and Rachel Lichten.

MAY 19: Minnesota Gov. Mark Dayton signs step therapy legislation into law

JULY: NPF engages once again with ICER for a “Psoriasis Condition Update.”

NPF advocate Marc Boas in an advocacy training.

2019

MARCH 12: Virginia Gov. Ralph Northam signs step therapy legislation into law.

Thank you, NPF advocates Stephen Keat and Sarah Truman.

APRIL 16: Oklahoma Gov. Kevin Stitt signs step therapy legislation into law.

APRIL 25: Georgia Gov. Brian Kemp signs step therapy protections into law.

Thank you, NPF advocates Cheryl Gentile and Ellie Trinowski.

APRIL 29: Washington Gov. Jay Inslee signs step therapy legislation into law.

Thank you, NPF advocates Lisa Bayautet and Kim Patton.

JUNE 13: Maine Gov. Janet Mills signs step therapy protections into law.

This bill was five years in the making. A Maine-specific coalition was formed in an effort to pass the legislation. NPF partnered with ACS CAN (American Cancer Society Cancer Action Network) to lead the coalition of more than a dozen member organizations, including the Arthritis Foundation and the National Multiple Sclerosis Society.

JUNE 18: Delaware Gov. John Carney signs step therapy protections into law.

JULY: NPF expands its advocacy team to include a dedicated grass-roots role.

JULY 9: Wisconsin Gov. Tony Evers signs step therapy legislation into law.

Thank you, NPF advocates Samantha Espinosa and Jordan Ellefsen.

SEPT. 25: NPF plays a leadership role in the introduction of the first step therapy legislation in the U.S. Senate, known as the Safe Step Act.

Alaska advocate Marc Boas met with Sen. Lisa Murkowski, R-Alaska, at the 2019 NPF Capitol Hill Day. This led to the senator becoming a sponsor of the bill.

Thank you, NPF advocate Marc Boas.

2020

MARCH 24: South Dakota Gov. Kristi Noem signs step therapy protections into law.

South Dakota advocate Gay Murphy had written her state representative, saying, “It has been a long, hard fight to find and be successful with the treatment my doctor and I have agreed on. That is why […] I really believe the doctor and the patient need to be the principal players in finding a treatment. Serious, hard-to-treat psoriasis, or other chronic disease, is exhausting enough with-out an extra step.”   

Thank you, NPF advocate Gay Murphy.

APRIL 21: NPF hosts its first-ever virtual Capitol Hill Day, as the pandemic halts the usual in-person efforts.

JUNE 11: Louisiana Gov. John Bel Edwards signs strengthened step therapy protections into law.

Thank you, NPF advocates Vickie Wilkerson and Debra Mike.

JULY 1: North Carolina Gov. Roy Cooper signs step therapy protections into law.

Thank you, NPF advocates Brian Lehrschall, Julie Greenwood and P.J. Leery.

 

Patrick Stone of NPF meets with Connecticut's federal representatives.

Photos by Patricia Fischer, David Hathcox, Diana Yepez, NPF staff and volunteers

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