A Year of Advocacy Movement!

The Infusion Access Foundation Advocacy Team kicked off 2023 with a new legislative tracking and advocacy software. Utilizing digital grassroots advocacy technology, the Infusion Access Foundation was able to map, track, report, and activate patient advocates from all over the country. The team offers tiers of involvement for patient advocates from letter writing to participating in an in-person Hill Day in Washington, D.C. and joining our team of “Patient Champions.” The team ended the year with over 3,500 actions taken by our advocates, a successful Hill Day, and nine pro-patient bills enacted by state lawmakers.  We supported OVER 46 bills and helped the passage of 12 Bills directly impacting infusion access for patients!

The Infusion Access Foundation Advocacy Team held its first Hill Day in Washington, D.C. on April 27. Seven star advocates from across the country represented the Infusion Access Foundation and the infusion and injection patient community. Our discussions focused on three federal bills – the Safe Step Act (S.652/H.R.2630), the Help Ensure Lower Patient (HELP) Copays Act (H.R.830), and the Improving Seniors Timely Access to Care Act – as well as pharmacy benefit manager reform. The day before the team left for Capitol Hill, the Infusion Access Foundation sent out an action alert to all patient advocates asking to send a letter to their Senators requesting their sponsorship of the HELP Copays Act–close to 300 advocates took action. In a separate action alert, we asked our advocates to send letters to the Senate Committee on Health, Education, Labor and Pensions (HELP) ahead of their upcoming markup–a formal meeting where Senators can debate, amend, and rewrite proposed legislation. For this campaign, we had 1,000 participants. During the markup, the committee discussed both the Safe Step Act and the HELP Copays Act, with a few members noting how much they had been hearing from their constituents about step therapy – a sure sign of advocacy at work! Following Hill Day, the HELP Copays Act boasted 105 cosponsors, seven of which signed on after our day on the hill and the Senate HELP committee ultimately voted to include the Safe Step Act in the Pharmacy Benefit Manager Reform Act (S.1339).

Champions Weekend is a patient advocate retreat that trains future Infusion Access Foundation Champions on various advocacy skills in a supportive and collaborative environment. This retreat is a “train the trainer” style program that provides our Champions with the tools they need to become fierce and savvy advocates to assist their respective communities. To amplify the patient voice, our team curated professional videos of each Champion Weekend patient story to add a face to our successful advocacy campaigns and further mobilize their stories. This empowering weekend fostered a dynamic cohort of Infusion Access Foundation community leaders standing together for treatment.

The Infusion Access Foundation advocate network is home to over 80,000 advocates. This year our advocacy campaigns reached over two million viewers and brought educational videos directly to patients.

The Infusion Access Foundation keeps advocates informed of the intricacies and movement of policy through our monthly Policy Corner newsletter. Each month, the newsletter breaks down a particular policy or subject into digestible chunks with the goal of helping our advocate community understand our healthcare system. During the legislative season, our advocacy team monitors key legislation and creates action campaigns to collect patient testimony and send letters to key lawmakers. While writing a letter to your state representative or giving your member of Congress a call may not seem like much, these small advocacy actions can make a huge impact on the healthcare policies enacted by our state and federal government, saving patients thousands of dollars and protecting access to lifesaving medications. This year over 3,500 advocacy actions were taken by Infusion Access Foundation patient advocates, and as a result we witnessed nine different pro-patient bills passed on the state level and significant movement on federal legislation.

As a national organization, the Infusion Access Foundation advocates for patients on both the federal and state levels, partnering with 20 coalitions across the country. From our work with the New England-focused Patients for Prescription Access Coalition to helping the California All Copays Count Coalition and non-medical switching efforts, our work spans across the U.S. The foundation does its best to remain abreast of the issues ailing patients in every state and the laws that could protect from further harm.

A number of coalitions are bill and state specific, while some are focused on tackling a specific patient access issue. This year, the Infusion Access Foundation served as non-profit lead for the Texas All Copays Count Coalition, created to champion HB 999, a bill that would outlaw copay accumulator policies for medications that do not have a generic equivalent. The coalition put together a Lunch & Learn where the Infusion Access Foundation Advocacy Director Kindyl Boyer moderated a Q&A for Texas lawmakers and staff. The event was followed by a successful Texas Patient Access Advocacy Day at the Texas capitol, where a dozen patient advocates from around the state met with Texas lawmakers. A few weeks later, Boyer testified before the House Select Health Care Committee, sharing the story of Patient Champion Megan Ryan. The committee passed HB 999 several days later, and the bill was signed into law by the Texas governor on June 10. Ultimately, the foundation’s experience with the Texas All Copays Count Coalition demonstrates the power of coalition partnerships and amplifying the patient voice.