Alicia Barron, LGSW, the Executive Director at the Infusion Access Foundation, introduces IAF and how it is making a difference in the infusion industry. This organization is a community of patients and advocates united to protect access to provider-administered treatments, such as infusions and injections. Read more about the Infusion Access Foundation below and how you too can partner with them to make a difference.
Who Are We?
As an infusion center professional, you know that patients are the heart of your business. At the Infusion Access Foundation, patients are the heart and soul of our work too. We work tirelessly to ensure that patients can access the medications they need in order to live their best and healthiest lives. That’s our mission.
The Infusion Access Foundation is a 501(c)(3) patient advocacy organization that envisions a world where provider-administered therapies are accessible and successful for everyone who needs them. Our team works tirelessly to ensure that patients have the resources to live vibrant, fulfilled lives and have an uplifting community to support them along the way. Our programs and passions are targeted at expanding access to provider-administered therapies because we know the right treatment at the right time changes lives.
The Infusion Access Foundation delivers unique value in the complex infusions space as an advocacy organization that is inclusive of all disease states and diagnoses. We have a broad view of the treatment landscape and are able to see the issues that impact all patients using provider-administered medications.
Our staff is a small but mighty, creative, and unique group of people who are all incredibly dedicated to our community. Most of us are personally impacted by autoimmune diseases. We’re passionate about improving the healthcare system to serve people living with chronic illnesses more effectively and compassionately. Those of our staff who don’t have a direct personal connection have formed deep professional relationships with people living with chronic conditions and genuinely understand the obstacles that they face in trying to access care.
The Foundation was formed to amplify the voices of people impacted by chronic illness relentlessly. We identify daunting healthcare hurdles and fight to change them. We identify and leverage partnerships and possibilities amongst our community of patient organizations and infusion partners. We work to convene and connect our community.
We recognize the need for education not only on recommended treatments but also on advocating for yourself or your loved ones in the healthcare system, the halls of Congress, and beyond. We understand the fundamental human need to belong and to find others who know what we’re going through, and we help to build community. We give a voice to the people who need it most.
What Do We Do?
The work of the Infusion Access Foundation falls into three categories- Educating, Empowering, and Engaging.
Educating
One of our main focuses is educating patients and their care partners. We educate folks on how to prepare for an infusion and how to talk to their healthcare providers about their treatment choices. We provide information about insurance terms and utilization management techniques, such as prior authorization, that they may face as they navigate the healthcare system. We educate people impacted by chronic illnesses about how to participate in grassroots advocacy, the legislative issues that may impact their care, and how to advocate for their needs within the healthcare system.
Empowering
We empower patients with tools to decipher insurance terms that insurance companies use to block access in our Health Term Dictionary. We enable patients to find resources that may help them access their treatments with our Infusion Resource Wizard, an online tool that includes streamlining the search for foundation and manufacturer patient assistance programs such as copay and cost-share assistance. We assist patients looking for a new treatment path or who want to advance research in finding clinical trials. We provide hope and encouragement through our blogs and patient stories. We’re incredibly proud of our patient stories and the brave individuals who shared them with us. These stories are deeply meaningful and allow others living with chronic illnesses to connect with the personal accounts of those who have been able to achieve a better quality of life by finding the best treatment option for them. We capture these stories at Champions’ Weekend, our patient retreat program where we bring a small group of people living with chronic illnesses together. Our training enhances self-advocacy skills and bolsters our grassroots advocacy, story-telling, and social media. This train-the-trainer style program allows us to help each person learn to share their story in an impactful way and to use their story to advance personal and systemic change in healthcare. We bring people together from condition areas to encourage collaboration across communities.
Finally, through our outreach efforts, we gather a group of advocates to attend our annual Infusion Access Foundation Hill Day. During Hill Day, we take a group of advocates to Washington, D.C. to have them speak to their legislators about how the health insurance industry and healthcare system impact them. Our focus has been on step therapy, known as fail-first policies; copay accumulators or maximizer policies; Pharmacy Benefit Managers; and Medicare reform. This program has been instrumental in helping patients feel empowered. It has helped them see how much of a difference their story can be in helping to shape legislation to support the patient community.
Engaging
The Infusion Access Foundation is a disease-agnostic organization. Instead of focusing on any specific disease state, our work ensures access to all provider-administered treatments. We work and search for partnerships with other nonprofit organizations and companies in healthcare.. We maximize our collective impact without duplicating efforts. We also strongly believe that our voices can push policy change faster together. Thus, we’re active on many coalitions and have even been the lead on the All Copays Count initiatives in Texas and beyond.
This year, in addition to engaging with many nonprofit partners, we invited a select group of ambulatory infusion center (AIC) providers to join our Industry Perspective Panel (IPP). The IPP has been made up of our biotechnology and life science partners, but we recently decided to expand this group to encompass our AIC partners as well. This group engages with us to help us understand what’s happening politically, economically, and culturally in the infusion landscape. Our AIC partners have been instrumental in helping us understand the needs of the patients being treated in infusion centers every day. This new partnership has brought such a new perspective to our IPP and helped shape some of the education and advocacy work that we’ve undertaken.
Patients are at the heart of what we do, and we continue to actively reach out and engage with people living with chronic illnesses. To further our reach via social media, we actively reach out to advocates to promote their content relevant to our cause, and to work with them to share our services. We’ve also undertaken a campaign to highlight the chronic illness journey. Online and offline, we provide tips and tools for our patients to improve their quality of life. These posts have garnered incredible engagement and have allowed us to reach so many more patients.
How Can We Help and Partner with Infusion Providers?
Our partners vitally amplify our work! As an infusion provider, we would love to work with you and your staff to help promote our materials and services. Our videos, infusion guides, dictionaries, and more are so helpful to patients learning to navigate a complicated system. Help us get them into the hands, phones, tablets, and computers of your patients.
We would love for you and your staff to sign up for our Advocacy Action Alerts. This will allow you and your staff to help us advance legislation that will allow patients to have better access to the treatments they need to live their best and healthiest lives. It may make it easier for you too! If your patients have been impacted by step therapy, a copay program, an alternative funding program, or a PBM issue, we want to hear about it. Connect us to your patient. We are always seeking out patient stories to illustrate the harm that these utilization management programs or policies cause.
If you want to add your AIC to our IPP, please reach out so we can tell you more! We have been so pleased with the conversations and collaboration that this has garnered that we would like to expand this group.
Finally, if you run into an issue with a patient or a group of patients, we may be able to help. Please contact us, and we will work with you to resolve the issue.
We are excited to partner with you to help serve our community. Please visit our website to sign up for our newsletter and action alerts, follow us on our socials, and stay in touch: www.infusionaccessfoundation.org.
Guest Authors: Alicia Barron, LGSW is the Executive Director at the Infusion Access Foundation and has more than 20 years of experience working with people affected by chronic illnesses and the healthcare providers who treat them. She cares deeply about the ways in which living with chronic illness impacts a patient in all areas of their life – from physical healthcare to psychosocial health.
Knowing that better outcomes for patients require teamwork, Alicia builds relationships with everyone involved in patient care – healthcare providers, pharmaceutical companies, other patient organizations, elected officials, and of course, patients themselves.
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