About the Eosinophilic & Rare Disease Cooperative
ERDC’s focus – 100% of the time is improving access to quality care and treatments. Full stop. We do this through our Rare Candor podcasts and through our flagship tool, the Hospital Emergency Advocacy & Treatment Kit (HEAT Kit) available at no cost and livestream interactive education.
Small and intentionally scrappy – we keep it real! Because we are patients and care partners we understand the pain points of living with this disease! Engage – order a HEAT Kit. Follow our Rare Candor Podcast on Apple and Spotify.
We see you. We hear you. Because we are you.
Phone: 520-690-4233
Email: [email protected]
Resources
Step-By-Step Roadmap to Accessing (New) Medications & Treatments
Getting healthcare covered—especially for new medications or procedures—can feel overwhelming. But remember it’s a process, and a “no” from your insurance company is not always final. Also remember if you get a letter in the mail that says it is denied and may not be on formulary, read the whole letter. It is often about proving your rare disease and not an issue of it being unavailable. That little nugget of priceless information is often buried in the letter!
This guide breaks down each stage of that process and gives you tools, tips, and sample letters to help you move forward confidently. A printable checklist is at the end of this page.
Also, we know this is A LOT of spoons to use. So pace yourself. But remember, do not give up. This is your healthcare. We, like you, are living with the complexity of rare disease. We see you. We hear you. Because we ARE you.
Using Product Information Pamphlets to Assist Prior Authorization for New Meds
For people living with rare diseases, accessing the right medication can sometimes feel like navigating a maze. One common challenge arises when a medication is approved for a new indication.
A new indication means that the FDA has officially approved a medication to treat a condition it wasn’t originally prescribed for. This often happens after clinical studies show that a drug is effective for a different disease or a different patient population. While this is great news for patients, it can sometimes create delays in insurance coverage.
Even after FDA approval, insurance companies may take several months to update their systems to reflect the new indication. During this time, coverage can be inconsistent or denied, which can be frustrating and stressful.
One way to smooth the process is to provide your physician and insurance team with the FDA-approved product information sheet. This sheet includes the specific disease the medication is approved to treat and the recommended dosing. Because it is published at the time of FDA approval, it is always available and can be a critical tool to support your access to treatment.
By understanding what a new indication means and leveraging official documentation, patients and healthcare teams can better navigate insurance challenges and ensure timely access to the therapies they need.
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About Advocacy Partners
The information above is provided by our partner. Learn more about our advocacy partners here.
