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IDF State Advocacy in the New Year

December 13, 2017

IDF State Advocacy in the New Year

With the new year approaching, many state legislatures will convene to consider thousands of potential new laws. IDF will continue its state policy work during the upcoming legislative sessions by focusing on efforts in multiple states addressing barriers to medication access, including Iowa, Massachusetts, Michigan, Nevada, New Jersey, Ohio, Oregon and Pennsylvania. 
We will also continue our SCID Newborn Screening efforts, focusing on Indiana and Louisiana, and hope to achieve statewide screening in all 50 states by the end of 2018.

Access to Care Coalitions

Over the years, IDF has worked with other like-minded patient organizations supporting state legislation that stops the use of increased cost sharing through specialty tier coinsurance practices. To this end, IDF established Affordable Co-pays and Treatments (ACT) for Nevada, a coalition of patient organizations formed to address, through legislation, the issue of discriminatory health insurance practices in Nevada in which people with primary immunodeficiency diseases (PI) and other chronic illness are being forced to pay unfair portions of healthcare costs.

While the legislation did not pass during Nevada’s 2017 legislative session, IDF is continuing its efforts to address this issue in 2018 through advocacy with the Nevada Commissioner of Insurance and the Health Insurance Exchange Board to urge for regulatory and policy change. You can learn more about IDF’s Nevada efforts here.

Building on our efforts in Nevada, IDF organized the Iowa Co-Pay Choice Coalition in 2017. The aim of this is introducing legislation in 2018 that ensures that people with chronic conditions in need of expensive treatments have a choice of health insurance plans that offer pre-deductible flat fee only co-pays for medications on all tier levels.

During Iowa’s legislative session, which begins January 8, 2018, IDF, along with the Iowa Co-Pay Choice Coalition, will be working toward passage of this legislation. As part of this effort, the coalition will be holding an advocacy day in Des Moines, IA on February 6. Here, coalition member organizations will bring advocates from their respective patient communities to advocate for this legislation to lawmakers in their state capital. Follow the Iowa Co-Pay Choice Coalition on social media to stay informed on this effort.

In addition to leading coalitions in Nevada and Iowa, IDF has been active in state access to care coalitions in six other states that will likely be proposing legislation in 2018 to address barriers to medication access through similar co-pay choice efforts or co-pay cap proposals: Massachusetts, Michigan, New Jersey, Ohio, Oregon and Pennsylvania.

IDF SCID Newborn Screening Campaign

In the new year, IDF will continue its campaign for all 50 states to add Severe Combined Immune Deficiency (SCID) to their newborn screening panels. As of November 2017, Kansas has implemented statewide screening for SCID, bringing the number of states currently screening up to 46. Of the four states that have not implemented full statewide screening, two (Alabama and Nevada) are taking significant strides to be fully screening by early 2018. IDF is continuing its efforts in the upcoming year in Indiana and Louisiana with the aim of having all 50 states screening by the end of 2018. Learn more about IDF’s SCID Newborn Screening Campaign here

Sign up for IDF Action Alerts to be alerted when your action is needed to support these, and other policy efforts in the new year.

Interested in advocating for issues affecting the primary immunodeficiency (PI) community in your state? Apply to be a Health Access Advocate today!

This article originally appeared in the IDF monthly e-newsletter, Primary Immune Tribune. Click here to subscribe.

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