Patient Advocacy 101.
1. What is patient advocacy?
Patient advocacy is getting the word out. Many infusion patients look healthy, so people sometimes don't understand their struggles. Access to life- and ability-preserving treatments depends on others understanding what it means to have good treatment. You get to pick what you feel comfortable doing. It could be simple, like sharing a post on social media, or something more in-depth like meeting with a legislator. Whatever you are willing to do, we will support you.
2. How does IAF advocate for patients?
We know you are busy with life. That's why we are here listening to what you need. We are working on your behalf so that you can keep living your life. We contact your legislators to share your stories and work with other groups to make sure people making decisions hear from infusion patients. We work hard to make sure you can get your treatment when you need it.
3. Why should we advocate together?
Your stories matter. A lot of people have no idea what you go through, and when they hear about it, they want to help. So we are gathering all the stories we can and putting them in front of people when and where they ring out loud and clear: in outreach campaigns, letters to lawmakers, formal documents and papers, and official in-person testimony. Legislators will listen, and our job is making sure they hear you. We can help you become a better advocate, and your stories help us make an impact.
From affordability to eligibility, the fight for patient access is ongoing and ever changing. Below are some issues that we think are important for patient participation. Take a look, and if you want to take part in the advocacy campaigns, go for it!
This common practice happens when insurance companies force patients to change medications for non-medical reasons like cost, disregarding doctor recommendations and patient needs.
Insurers use Copay Accumulators to limit how much a patient’s out-of-pocket expenses can count toward their deductible, meaning patients have to pay even more.
340B Drug Pricing Program
Enacted in 1992, the federal program 340B was intended to stretch cost savings to protect vulnerable patients, but is now being exploited in some places to generate profit.
You likely know this as “fail first,” and it’s when your insurance company requires you to try and fail at using a less expensive (and often less effective) medication before paying for a more expensive option.
Specialty Pharmacy Mandates
If you have been told that your provider may not be able to continue treating you because of an insurer-requirement, you may be a victim of a specialty pharmacy mandate.
People experience health care, treatment, and their diseases differently due to who they are and where they live.
Your support means the world to us.