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While facing barriers to medication can be frustrating, there are resources available to help you navigate these challenges.

Below you’ll find a list of patient assistance programs to help cover the cost of various medications, interactive resources with step-by-step guides on how to overcome hurdles with insurance coverage and specialty pharmacies, and resources specifically for seizure rescue medications.

Assistance programs

Many medications have co-pay assistance programs for those who qualify. Generally, co-pay assistance is for commercial insurance plans. However, drug manufacturers may also have patient assistance programs (PAPs) for those who are still in need of financial assistance. While these programs often limit the total amount that an individual can utilize per year, it is helpful to know what options are available. Co-pay assistance programs are typically for medications that are brand name with no generic equivalent available. Often, your prescribing provider or specialty pharmacist can help direct how to get set up for this type of program, but they cannot do everything for you because personal financial information such as tax returns may be required.

Overcoming hurdles

Webinar

In January 2021, the TSC Alliance hosted an educational webinar with Greenwich Biosciences titled “Overcoming Hurdles: Insurance, Scripts and Specialty Pharmacy.”  You may watch it below or at this link on YouTube.

This e-webinar was sponsored by Greenwich Biosciences, which also created a companion interactive tool to help you overcome potential hurdles that you may find on your tuberous sclerosis complex (TSC) journey.

DOWNLOAD THE COMPANION INTERACTIVE PDF

Podcast

In the March 2021 episode of TSC Now titled “Overcoming Hurdles with Health Plans and Specialty Pharmacies” a TSC parent shares the challenges she faced navigating the healthcare system to refill a prescription and how she ultimately got resolution, and two former payers provide advice on managing your health plan, dealing with changes in coverage and communicating effectively with your pharmacy. This episode was sponsored by Greenwich Biosciences.

LISTEN NOW

Seizure rescue medications

A seizure is a medical emergency that may require intervention with a rescue medication. Therefore, it is important to have a plan on how to respond during a seizure, based on the patient’s medical history. Below are some resources on common rescue medications as well as how to develop a seizure action plan.

Reviewed by Ashley Pounders, MSN, FNP-C, Director of Medical Affairs, TSC Alliance, November 2023.

Thank you to our TSC Navigator supporters:

Northstar Sponsors

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