ABOUT THE BILL

The PROTECT Rare Act (H.R. 6094) aims to improve access to treatments for rare diseases by ensuring that certain medications used to treat these conditions are covered under Medicare, Medicaid, and private health insurance plans. The bill specifically targets drugs for rare diseases or conditions that affect 200,000 or fewer individuals, conditions considered rare.
To qualify for coverage, these drugs must be supported by peer-reviewed research or medical expert recommendations and must not have been reviewed unfavorably in specified medical compendia or used in a manner that contradicts approved labels. 
By establishing these criteria, the PROTECT Rare Act seeks to enhance the availability of essential treatments for rare disease patients and address gaps in coverage that can prevent them from receiving necessary care.

CURRENT SITUATION & ISSUE

Currently, many individuals with rare diseases face challenges in obtaining insurance coverage for treatments. 
Despite the availability of effective medications, patients often encounter barriers such as inadequate insurance coverage, high out-of-pocket costs, and limited access to necessary drugs. 
These issues can result in delays in treatment, increased health complications, and overall reduced quality of life for those affected by rare conditions.

HOW THE BILL FIXES IT

The PROTECT Rare Act addresses these challenges by mandating that Medicare, Medicaid, and private health insurance plans cover medications for rare diseases that meet specific criteria. 
By requiring that these drugs be supported by credible research or medical expert opinions and ensuring that they are not used inappropriately according to their labels, the bill aims to improve coverage and access for rare disease patients. 
This ensures that essential medications are available to those who need them, reduces financial barriers, and enhances overall treatment accessibility.

WHAT IT SEEKS TO DO

The PROTECT Rare Act seeks to improve insurance coverage and access for medications used to treat rare diseases by establishing clear criteria for drug coverage under Medicare, Medicaid, and private health insurance plans.
Expanded Coverage: Ensures that drugs for rare diseases affecting 200,000 or fewer individuals are covered.
Criteria for Coverage: Requires drugs to be supported by peer-reviewed research or medical expert recommendations and used according to approved labels.
Improved Access: Aims to enhance patient access to essential treatments by addressing coverage gaps.

HOW THIS LEGISLATION BENEFITS OUR COMMUNITIES

NEXT STEPS TO ADVOCATE FOR IT

1.

Find the Legislation and Check the Status
To begin your advocacy efforts, it’s essential to know the current status of the bill. This involves identifying the bill numbers and checking the progress which you can do by clicking on the button below which will take you to our “Search & Track Legislation” page. Understanding where the bill stands—whether it has been introduced, is in committee, or is up for a vote—will help you tailor your advocacy efforts accordingly. Okay now don’t close the tab with this open, you will need it for step 3.
FIND THE BILL

2.

Find & Get Contact Info For Your Representatives
Identifying your federal and state representatives is crucial for targeted advocacy. You can use our “Find Your Representatives” page by clicking the button below to find your representatives’ contact information, including their phone numbers, email addresses, and office locations.
FIND YOUR REPRESENTATIVES

3.

Check If Your Representatives Are Cosponsoring the Bill
Cosponsoring means that a representative or senator has added their name in support of the bill, indicating their endorsement and helping to build momentum for its passage. Remember that page from step 1 that you pulled up with the information about the bill? That is where you can also look up your representatives on the bill’s page to see if they are listed as cosponsors. If they are already cosponsors, then you don’t need to do anything since they already support it, (if you want to though you thank them for their support). If they are not co-sponsors, then continue on through the steps which will help guide you to encouraging them to become cosponsors.
CHECK COSPONSORSHIP

4.

Create A One-Pager
Now that you know that your representative is not already supporting this bill, you can create a one-pager prior to contacting them so that you have it ready to go should you need it quickly. If you have not heard of a one-pager before, a one-pager is a concise document summarizing the key aspects of the bill. This should include a brief summary of the bill, its benefits, relevant statistics, and a personal story to humanize the issue. The one-pager should also contain a clear call to action, specifying what you want the reader to do. It might seem intimidating, but don’t worry we created a template and guide over on our one-pager page which you can access by clicking the button below.
CREATE A ONE-PAGER

5.

Contact Your Representatives
Now that you have all the info and one-pager, it is time to contact your representatives! You can learn all about this process and access resources and guides as to what to do on our, “Contact Your Rrepresentatives” page by clicking the button below. You can prepare your talking points using your one-pager, then reach out to your representatives via email, phone calls, or by scheduling a meeting. You can then explain why this bill is important to you, how it impacts you or those you care about, and request their support. You can then provide them with your one-pager for them to have and reference after.
CONTACT YOUR REPRESENTATIVES

6.

Share About The Bill On Social & Mainstream Media
Personal stories can be powerful advocacy tools. You can use our social and mainstream media toolkits to help you share about the bill, about your own experiences with the issue and how the passage of the bill would improve your healthcare. You can then go on to highlight the broader impact on patients with chronic, complex, and rare diseases. You can do this on social media as well as mainstream media to help make others aware of the legislation. While sharing about it, you can also provide resources, like this page, to help them each take action with their own representatives. This can help to get more representatives involved and move the process of the bill getting passed forward.
MEDIA TOOLKIT