Building coalitions for better health

| Amy Prentice

NPF’s government relations and advocacy team recently attended our fourth annual National Conference of State Legislators (NCSL) Legislative Summit.

NCSL was founded to support, defend and strengthen state legislatures. The Legislative Summit is one of NCSL’s signature events. State legislators, legislative staff, government officials, business representatives, educators and others interested in public policy attend the event.

The 2018 Summit, hosted in Los Angeles, included 129 policy sessions, 393 speakers, 212 exhibiting organizations, and 5,310 attendees, including more than 1,500 legislators and legislative staff. Throughout the week, attendees browsed the large exhibition hall and viewed hundreds of educational booths manned by staff eager to discuss their work and potential partnership opportunities.  

Strength in numbers

Unlike past years, NPF staff attended NCSL on behalf of the State Access to Innovate Medicine (SAIM) Coalition with partners from the Crohn’s & Colitis Foundation and the National Organization for Rare Disorders. 

The SAIM Coalition, which is composed of patient advocacy organizations, health care provider societies and biopharmaceutical companies, develops state-based policy solutions to improve patient access to innovative medicines. As an active member of the coalition, we work in states across the country to advance laws and regulations that protect and improve patient access, allowing us to amplify NPF’s mission and work on step therapy and out-of-pocket costs.

Together with the Crohn’s & Colitis Foundation and the National Organization for Rare Disorders, we took advantage of the opportunities to speak with lawmakers and raise awareness around the SAIM Coalition and NPF. We hosted a booth in the exhibit hall, attended policy sessions and participated in various networking events for NCSL attendees.

Attending NCSL with the SAIM Coalition allowed us to expand our message and highlight our efforts as an organization and coalition. Over the course of four days, we were able to speak with a great number of lawmakers from states across the country, as well as organizations from differing sectors, and share how lawmakers can partner with us to better serve the patient population. We are excited to report many expressed interested in supporting our efforts. 

NPF and fellow SAIM Coalition members are in the process of sharing information gained and strategizing follow-up actions to build on and amplify our NCSL presence. Prior to the start of our 2019 legislative efforts, we will follow up directly with those lawmakers to continue discussions. We will also utilize social media to acknowledge these new relationships and thank lawmakers for their support.   

Get involved

NPF’s government relations and advocacy team continually works to change the policies that will improve the health of those living with psoriatic disease. Identifying opportunities to partner with and educate lawmakers on barriers to care is critical. 

NPF works to achieve this goal in various ways, including coalition work at the state and federal level, state advocacy days, email and social media. 

The patient advocate voice and support is vital to our efforts! NPF staff continues to identify patients who are interested in working with us, lawmakers, providers and fellow patient advocates to increase awareness and influence policy change leading to better access to care.  

You can also stay up-to-date on our advocacy work by following us on Twitter via @NPF and #npfadvocacy. Please share upcoming Twitter posts as we thank lawmakers for their support at NCSL. Please visit our webpage for more information or contact Amy Prentice at aprentice@psoraisis.org or 503-546-5551 to discuss the different ways you can get involved.


Driving discovery, creating community

For more than 50 years, we’ve been driving efforts to cure psoriatic disease and improve the lives of those affected. But there’s still plenty to do! Learn how you can help our advocacy team shape the laws and policies that affect people with psoriasis and psoriatic arthritis – in your state and across the country. Help us raise funds to support research by joining Team NPF, where you can walk, run, cycle, play bingo or create your own fundraising event. If you or someone you love needs free, personalized support for living a healthier life with psoriatic disease, contact our Patient Navigation Center. And keep the National Psoriasis Foundation going strong by making a donation today. Together, we will find a cure.

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