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Leveraging a Lame-Duck Session As the Infusion Access Foundation looks ahead to 2025, the changing political landscape following the election will likely bring both opportunities and challenges for infusion patients. Rest assured that the Infusion Access Foundation will continue to advocate for infusion patients and work with state and federal leadership to support access, equity, […]

Some new changes coming to Medicare Part D in 2025 could benefit Medicare-eligible individuals who rely on prescription medications. Medicare is health insurance for folks ages 65 or older. Individuals with disabilities or those with End-Stage Renal Disease (ESRD) or ALS (Lou Gehrig’s disease) may also qualify for Medicare before turning 65. If you are […]

The Policy Corner discussed Prescription Drug Affordability Boards (PDABs) in April. As an Ensuring Access through Collaborative Health (EACH) Coalition member, the Infusion Access Foundation is interested in learning more about PDABs and the impact upper payment limits (UPLs) could have on infusion and injectable access, cost-sharing responsibility, and health equity. As we previously reported, […]

As Project and Fundraising Manager at the Infusion Access Foundation, I bring over five years of nonprofit experience in fundraising, communications, project management, and event planning. Every day, I am motivated by a deep commitment to making a positive impact. My Background Growing up in a family of doctors, I was surrounded by fascinating medical […]

Help Us Advocate for Patients The Infusion Access Foundation is gearing up for its second annual Hill Day on July 24 in Washington, D.C. The foundation is bringing together 10 patient advocates and staff members to meet with federal offices on Capitol Hill. This event is an opportunity for patient champions to directly engage with […]

An Introduction to INS In May, I had the privilege of speaking at the Infusion Nurses Society (INS) 2024 Annual Meeting. INS is “an international nonprofit organization representing infusion nurses and other clinicians engaged in the specialty practice of infusion therapy.” The organization has been around since 1973, bringing resources and learning opportunities to the […]

Medicaid In the News State Medicaid plans have been in the news recently, from “Medicaid Unwinding” to Texas’s plan to drop nonprofit children’s health plans from Medicaid to potential Medicaid expansion in Mississippi. What is Medicaid?  Medicaid was first enacted In 1965. President Lyndon B. Johnson signed the Social Security Amendment into law, establishing Medicare, […]

Reliving the Joy of Last Year’s Toast Event: Highlights, Achievements, and Exciting Silent Auction Preview We’re still reveling in the joy and connections made at last year’s Toast event! Beyond the festivities, this event was pivotal in helping participants celebrate our accomplishments. It was also a perfect kick-off to our sister organization, NICA’s annual conference. […]

In 2017, the National Academy for State Health Policy (NASHP) published model language for states seeking to address high drug prices through Prescription Drug Affordability Boards (PDABs). They define a PDAB as a committee independent of the state’s government, composed of five members appointed by the Governor and confirmed by the state’s Senate. The PDAB […]

This part of my life is called finding acceptance and moving forward:   My name is Krystel El Koussa. I’m a 27-year-old filmmaker, and I LOVE LIFE! However, at 26, I got a diagnosis that changed my life. I am a Myasthenia Gravis Warrior. Here’s how I found acceptance and why I started sharing my story: […]

We are so excited for our upcoming TOAST Together for Treatment Fundraiser!! Set to coincide with the NICA 2024 annual conference, you can get tickets now for TOAST on June 20th, 2024 at the MGM Grand. Mingle with industry thought leaders while enjoying an effervescent evening packed with dinner, libations, and fundraising. With the inaugural 2023 […]

Living with a chronic illness takes a tremendous amount of energy every day. Under the immense pressure that comes from chronic illness, it’s easy to feel isolated. The truth is that chronic illness requires you to adjust and adapt to a unique and new reality. Giving yourself grace and accepting that your journey may look […]

Cyberattack on Change Healthcare  On February 21, a cyberattack on Change Healthcare, a subsidiary of UnitedHealth Group, put the U.S. healthcare system in a tailspin. The medical technology company, which specializes in revenue and payment cycle management under the Optum umbrella, handles approximately 15 billion healthcare claims transactions per year. Given the footprint of the […]

State Legislative Sessions Underway The patient advocacy community ended 2023 with 19 states and Puerto Rico having protections against copay accumulator programs, 35 states with step therapy protections, and 15 states with protections against mid-year formulary changes. Already a month into 2024, state legislative sessions are well underway with state lawmakers assessing bills that will […]

Last night a friend posted about making the important decision to have a preventative mastectomy because she held a 1 out of 3 chance of developing breast cancer. Always grateful for others opening the door to health education through their own brave stories, I was simultaneously happy for her and then selfishly filled with a […]

In December 2023, I attended the Advances in Inflammatory Bowel Diseases (AIBD). The conference brings together leading healthcare providers and stakeholders across the gastrointestinal and inflammatory bowel disease space. The event is a remarkable opportunity to get an inside look at how the latest research is shaping the future of healthcare for generations of patients […]

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 […]

A Year of Progress  2023 has been a year of progress for the “All Copays Count” movement. To date, 19 states and Puerto Rico have passed legislation protecting patients from copay accumulator programs. And on September 29, the U.S. District Court for the District of Columbia ruled in favor of patients, vacating the 2021 U.S. […]

With seven proposed bills and legislative packages pending in both the House and Senate, it seems pharmacy benefit managers (PBMs) are no longer anonymous drug middlemen, but almost a household name – and one that’s found itself in the cross hairs of Congress. While we’re grateful there is bipartisan enthusiasm behind reining in PBM practices, […]

As a disease-agnostic organization, the Infusion Access Foundation is on constant watch for new payor policies that impact any of the numerous infusion patient populations we support. From adding an unnecessary or harmful step in a step therapy protocol to forced non-medical switching, it seems no disease community is safe from these headaches. This month, […]

Written by Kindyl Boyer, Infusion Access Foundation Advocacy Director. To reach out about advocacy partnerships, please reach out to kindyl.boyer@infusionaccessfoundation.org Color of Crohn’s & Chronic Illness’s (COCCI) conference – Equity in GI Last month, I had the privilege of attending the Color of Crohn’s & Chronic Illness’s (COCCI) conference – Equity in GI. The conference, […]

Writing is my passion. Often, I am unaware of my most complex thoughts and feelings until my fingers grace a keyboard. For me, writing tends to take on a life of its own as words weave themselves into a symphony of syntax, finally dancing to their own beat. The keyboard calms me. Although I always […]

1. “Serenity” by Kajal Patel My name is Kajal Patel and I have been living with Crohn’s disease since I was 12 years old. I’m currently in my last year of medical school, and my passion for medicine was driven by my diagnosis. It was with painting that I truly began to understand “the art […]

Whac-A-Mole Policies At the Infusion Access Foundation, we often relate our fight for patient access to the game of Whac-A-Mole – an arcade game where the player repeatedly “whacks” a mole that pops up randomly through one of five holes. But instead of walking away from the game with mild amusement or annoyance, the insurance […]

The Infusion Access Foundation Advocacy Team held its first Hill Day in Washington, D.C. on April 27. As discussed in the last Policy Corner, the team brought along seven star advocates from across the country to advocate for the infusion and injection community. Our discussions focused on three federal bills – the Safe Step Act […]

Last month, a group of volunteers and staff members traveled to Washington, D.C., for the Infusion Access Foundation’s first-ever hill day. Together, we met with representatives from across the country to discuss and advocate for healthcare reforms and policies that will help improve access to treatment and strengthen patient protections for patients with chronic and […]

The Infusion Access Foundation Advocacy Team will arrived on Capitol Hill in Washington, D.C. on Thursday, April 27 for their first ever Hill Day. We brought along seven star advocates from across the country to advocate for the infusion community–talking to key members of the U.S. House and Senate about the importance of federal reforms […]

The start of 2023 has been a busy one for the Infusion Access Foundation Advocacy Team. As a national organization, we advocate for patients on both the federal and state levels and work with coalitions and partners across the country. From our work with the New England-focused Patients for Prescription Access Coalition to helping the […]

President Biden gave his second State of the Union (SOTU) address February 7, 2023. This was the president’s first time addressing Congress after the midterm elections, and more importantly, after the Republican party (i.e., the side of the chamber not cheering) took control of the house. The President addressed the elephant (and donkey) in the […]

The internet has revolutionized how people connect, collaborate, and express themselves. With  more creativity, information, and inspiration than an individual could consume in a lifetime only a finger tap away, it’s no wonder that this technology has impacted not only individuals, but entire communities. In fact, fandoms around pop-culture TV shows and movies often bubble […]

From fully-insured, self-funded, employer-sponsored, state-regulated, to ERISA; health plans have plenty of names and confusing classifications, but what does it mean for you, the insured? If your state passes a step therapy reform bill, are you protected under the new law? Is your health plan required to count your copay assistance toward your deductible now […]

It’s the end of the year, and whether you are coasting until the holidays or scrambling to get it all done, 2023 will be here before we know it. What to Expect in Advocacy 2023 The IAF Advocacy Team has a lot to look out for in 2023. Given the odd-numbered new year, all 50 […]

I plan to spend an upcoming Wednesday getting my IVIG (or army as my daughter calls it).  Every time I go – every. single. time. I’m touched by the biggest reminder of what matters most in life.  It would cause you to pause as well and think about your life in a new and different […]

I live Just under the surface of the world I walk with you I laugh with you But my world has more darkness Like there is a film between us That cannot be fully seen But when we hold hands We never quite touch. The sun shines on me I can see it But I […]

Embarking on the college journey is a huge accomplishment, but it’s also a time of significant transition. From new independence, and responsibilities, to the excitement of the college campus, there’s truly so much for new students to discover during the four years of university study. With work, school, and social life to balance, it takes […]

There’s been some buzz around a particular character in the healthcare industry and their influence over drug prices…but it’s not who you think. It’s not pharma, and it’s not your insurance company (or maybe it is…we’ll get to that later). To be honest, you may have never heard of them before. This shady character we […]

The Power of the Patient Voice It is imperative that all players involved in mediating patient access, navigation, and reimbursement come together to discuss how to improve and increase patient access to their prescribed treatments. However, it is the power of the patient advocate voice, backed by training and resources, that drives discussion and ultimately […]

Have you been impacted by a natural disaster? Not sure if you can access your infusion treatment? Use our LOCATOR tool to get updates from your provider and find your closest location. In the wake of the devastating impacts of hurricane Ian, many are scrounging for resources, including access to their life saving medications. When […]

As the Digital Content Specialist for the Infusion Access Foundation (IAF), my job is to help guide the communications and content strategy for the organization, both internally and externally. I bring not only my professional background in writing, design, video, and creative strategy, but also my personal experience as a patient, to craft meaningful content […]

Three patient advocacy groups are taking a stand against copay accumulator programs for Affordable Care Act (ACA) or “Obamacare” plans. Copay accumulator programs prevent patients from using cost assistance, like copay cards, for medication purchases (for a more in-depth explanation of copay accumulator programs check out IAF’s explainer video). The HIV+Hepatitis Policy Institute, the Diabetes […]

Unless you’ve successfully avoided all news and social media over the last month, you’ve probably heard something about the Inflation Reduction Act (IRA). The IRA, not to be confused with your individual retirement account, will have a pretty significant impact on Medicare and the overall healthcare industry. How will it impact you? First let’s take […]

Lately social media has been filled with pictures of kids heading back to school. For parents of children with chronic illnesses, back-to-school preparation can be a bit more involved. For these parents it may mean talking with the school administrators about a 504 plan or an Individualized Education Plan (IEP) for their child. Or talking […]

Step Therapy Step Therapy is a strategy that insurance companies use to make patients try and “fail” a cheaper medication before the health plan will cover the medicine their doctor prescribed. This insurance tactic, also known as “Fail First,” is harmful to patient health and safety. Imagine you are a vegetarian and order a delicious […]

Change is like waves Change can be beautiful, clear, and peaceful It can be choppy and cloudy It can be chaotic and gloomy It can be hostile and dangerous too Change can be big, it can be small It can be scary and intimating   Regardless of what comes our way, We must face it […]

Pharmacy Benefit Managers, or PBMs, are third party entities that contract the management of pharmacy benefits for government programs and employer-sponsored health plans. PBMs develop and maintain drug formularies, contract with pharmacies, negotiate rebates and contracts with manufacturers and oversee the processing and payment of pharmacy benefit claims. Recently, many healthcare professionals and advocates have […]

Living with invisible disease often has consequences that can be embarrassing to talk about. In advocacy, even when legislation is passed, it is often simply a first step. Social acceptance and awareness can be a separate movement all together. For patients with Crohn’s Disease or other digestive disorders, access to a restroom is a human […]

By, Haley Duff I know you want to help. I hope you want to help. I can see it in your eyes, “she’s back”. You’re sorry you don’t know how to fix my broken. You let me confide though into the 10 minutes that I am allotted… 10 minutes? To explain to you the tens […]

by Erin Mitchell   pain looks different than I thought it would it changes shapes fitting in to the narrowest of groves sliding into the nooks not yet discovered   hope too looks different coming in undulations and waning just the same   this body though is the most surprising of all a work horse […]

An integral piece of the Infusion Access Foundation mission is building out an advocacy platform where patients can utilize their voice to effect lasting change as we work toward treatment access for chronic disease patients. From affordability to eligibility, the fight for patient access is ongoing and ever changing. As we close out the end […]

from spot on the brain to chronic pain there was no way I was ready for these life changes but through a lot of prayer and a bit of hope it made it easier for me to cope cause never been the one to take life as a joke that’s why MS won’t drive me […]

it’s hard trust me, i know especially the beginning you were going about your daily life and you were striving to become all that you have wanted to become the future was looking bright and finally working in your favor you were thriving then suddenly the whole world comes crashing down like you were high […]

Austin, TX. October 26, 2021. In a bright sunlit atrium, on an unusually breezy day, the winds of change blew through a group of individuals just yesterday were strangers. Traveling across the country, these patient advocates entrust their stories with the Infusion Access Foundation (IAF) team as they share their journey of strength, spirit, chronic […]