Ensuring Affordable Access to Care
As a rare disease community, those living with PI may find it difficult to get the lifesaving treatment they need through affordable rates and flat fee only co-pays. IDF works on the issues of co-pay and affordability on both a Federal and State level, but often the State level is where the issue gets met head-on and why IDF leads the charge for our community in states like Iowa.
Since the summer of 2017, the Iowa Co-Pay Choice Coalition, lead by IDF, has had the aim of introducing and ultimately passing legislation in 2018. This legislation, SSB 3004, ensures that people with chronic conditions, like primary immunodeficiency disease (PI), in need of expensive treatments have a choice of health insurance plans that offer affordable co-pays for treatments on all tier levels. On February 6, 2018, IDF held an Advocacy Day in Des Moines, IA that brought together patient advocates to lobby Iowa legislators to pass SSB 3004.The aim of the day was to bring together coalition partner organizations, including IDF who led the coalition, along with patient representatives to advocate for the Co-pay Choice Legislation, SSB 3004. This legislation will ensure that people with chronic conditions in need of expensive treatments have a choice of health insurance plans that offer flat fee only co-pays with no deductibles for medications on all tier levels.
The bill was introduced by Senator Segebart, Chairman of the Human Resources Committee, and championed by Senator Greene who chairs the three-person subcommittee that met on January 23 at which IDF presented in support of SSB 3004 on behalf of the Coalition. After agreeing to a modest amendment, the subcommittee recommended passage to the full committee. The role of advocates on February 6 was to lobby the full Human Resources Committee to ensure that the bill would pass and then go to a vote by the full Senate. Advocates also focused on the House of Human Resources Committee members who would be important once the bill passed the Senate.
Participants at the advocacy day included representatives from IDF, the National Psoriasis Foundation (NPF), the National Alliance on Mental Illness (NAMI) and the National Multiple Sclerosis Society (NMSS). Other coalition members including, the Alliance for Patient Access (AfPA), Arthritis Foundation (AF), Hemophilia Federation of America (HFA), Leukemia & Lymphoma Society (LLS), the U.S. Pain Foundation and the National Organization of Rare Disorders (NORD) supported the efforts through sponsorship and participating in action alerts and social media. The day’s activities included a grassroots advocacy training breakfast where participants learned information on the Iowa legislative process, tips on telling their story to legislators while incorporating bill talking points and then hearing from one individual who is living with PI.
After the training, participants spent the day meeting with key legislators and sharing our message in support of SSB 3004. The day wrapped up with an ice cream social with Iowa legislators and staff that provided another opportunity for Coalition members to meet with key decision makers and to share written materials. After the event, IDF has continued to advocate for SSB 3004 to ensure that it moves through the process. For those living in Iowa, please sign up for Co-pay Choice Alerts to stay informed.
For those living in others states, sign up for IDF Action Alerts to support co-pay choice bills in other states as well and other important policy issues impacting the PI community.
This article originally appeared in the IDF monthly e-newsletter, Primary Immune Tribune. Click here to subscribe.