--- title: Protect Rare Disease Treatments and Medication Affordability - Patients Rising description: Learn how the Creating Hope Reauthorization Act and Patent Integrity Act protect rare disease treatments and ensure affordable medications. image: https://www.patientsrising.org/hubfs/Dear-Congress-1-1080x630.png --- [![Patients Rising](https://www.patientsrising.org/hs-fs/hubfs/raw_assets/public/PatientsRising-u4m/templates/images/patients_rising_logo.png?width=120&height=900&name=patients_rising_logo.png "Patients Rising")](https://www.patientsrising.org/) - Policy Center - - [Policy Framework ](https://www.patientsrising.org/policy) - [Affordability ](https://www.patientsrising.org/policy/affordability) - [Accountability ](https://www.patientsrising.org/policy/accountability) - [Innovation ](https://www.patientsrising.org/policy/innovation) - [Federal Healthcare Policy ](https://www.patientsrising.org/policy/federal) - [Learning Center ](https://www.patientlearningcenter.org/) - - [LEAD Education ](https://www.patientlearningcenter.org/lead) - [Our Community ](https://www.patientsrising.org/our-community) - [Patient Senate ](https://www.patientsrising.org/patient-senate) - Insights - - [All Posts ](https://www.patientsrising.org/advocacy-updates) - [PR Magazine ](https://www.patientsrising.org/pr-magazine) - [Patient Stories ](https://www.patientsrising.org/advocacy-updates/tag/patient-stories) - [Medical Bankruptcy in America ](https://www.patientsrising.org/medical-bankruptcy-america) - [State of the Patient Podcast ](https://www.patientsrising.org/state-of-the-patient-podcast) - Get Involved - - [Share Your Story ](https://www.patientsrising.org/storyshare) - [Become an Advocate ](https://www.patientsrising.org/become-an-advocate) - [Join the Patient Senate ](https://www.patientsrising.org/patient-senate) - [Join Our Community ](https://www.patientsrising.org/community) - [Events ](https://www.patientsrising.org/events) - - [State of the Patient Summit & Rise Awards ](https://www.patientsrising.org/events/summit-and-rise-awards) - [Advocacy Fly-ins ](https://www.patientsrising.org/patients-rising-fly-in) - [Virtual Lunch n' Learns ](https://www.patientsrising.org/events) - Virtual Town Halls - About Us - - [Our Mission ](https://www.patientsrising.org/about-patients-rising) - [Our Principles ](https://www.patientsrising.org/patients-rising-principles) - [Our Team ](https://www.patientsrising.org/team) - [Our Board of Directors ](https://www.patientsrising.org/board) - [Our Advisory Councils ](https://www.patientsrising.org/advisory-council) - [Partners and Coalitions ](https://www.patientsrising.org/partners) - Corporate Partnerships - [Funding & Financial Reports ](https://www.patientsrising.org/financial-transparency) [Donate ](https://patientsrising.org/?form=support-patientsrising) This is a search field with an auto-suggest feature attached. - There are no suggestions because the search field is empty. [Rare Disease](https://www.patientsrising.org/advocacy-updates/tag/rare-disease) Sep 24, 2024 Protect Rare Disease Treatments and Medication Affordability Written by [Admin](https://www.patientsrising.org/advocacy-updates/author/admin) SHARE Link copied! **Protecting the Future of Rare Pediatric Disease Treatments and Ensuring Medication Affordability** To **protect rare disease treatments** and **ensure medication affordability,** Congress must pass the **[Creating Hope Reauthorization Act of 2024](https://www.congress.gov/bill/118th-congress/house-bill/7384) ([S. 4583](https://www.congress.gov/bill/118th-congress/senate-bill/4583?q=%7B%22search%22%3A%22S.+4583%22%7D&s=1&r=1))** and the **[Medication Affordability and Patent Integrity Act](https://www.congress.gov/bill/118th-congress/house-bill/5429) ([S. 2780](https://www.congress.gov/bill/118th-congress/senate-bill/2780))**. These bills, if passed, will have a profound impact on the lives of countless patients and their families. Together, these bills strike a balance between driving innovation and keeping medications affordable for patients. **UPDATE**: Earlier today, the U.S. House of Representatives took an important step in supporting innovation for rare pediatric diseases by passing **H.R. 3433, the Give Kids a Chance Act**. Passed by voice vote, this marks a key victory for families and children who rely on life-saving treatments for rare conditions. Additionally, the **Continuing Resolution** includes a critical provision that extends the **FDA Priority Review Voucher (PRV) program** for rare pediatric diseases until **December 20, 2024**. This *temporary extension* gives Congress time to finalize a full reauthorization of this essential program before the year ends. ### Protecting Innovation for Rare Pediatric Diseases: The Creating Hope Reauthorization Act of 2024 (S. 4583) **First**, the **Creating Hope Reauthorization Act of 2024** is crucial for continuing life-saving innovation for children with rare diseases. This bill reauthorizes the **Rare Pediatric Disease Priority Review Voucher (PRV) program**, a vital initiative that has already led to treatments for over 200,000 children across 39 rare conditions. Remarkably, many of these diseases had no FDA-approved treatments before the PRV program was introduced. However, without reauthorization of S. 4583, the future of **rare disease treatments** is at serious risk. As a result, millions of children may lose access to new and innovative therapies. Therefore, to **protect rare disease treatments**, Congress must act quickly. ### Ensuring Affordability: The Medication Affordability and Patent Integrity Act (S. 2780) In addition to protecting innovation, affordability is equally important. The **Medication Affordability and Patent Integrity Act (S. 2780)** addresses this critical challenge. Specifically, it tackles patent misuse, which can delay affordable generics and biosimilars from reaching the market. This bill ensures **rare disease treatments** remain affordable by preventing unnecessary exclusivity extensions. S. 2780 improves transparency in the patent system and holds companies accountable. Moreover, by supporting this bill, Congress can help **protect rare disease treatments** and reduce drug prices for patients. Ultimately, it promotes a fairer marketplace, benefiting both patients and the healthcare system. ### Why These Bills Matter Taken together, the **Creating Hope Reauthorization Act (S. 4583)** and the **Medication Affordability and Patent Integrity Act (S. 2780)** will: - **Foster Innovation**: S. 4583 ensures the continued development of **rare disease treatments**. - **Ensure Affordability**: S. 2780 promotes fair competition, allowing affordable alternatives to enter the market. - **Give Patients Hope**: These bills ensure access to affordable, innovative treatments for millions of Americans struggling with chronic and rare illnesses. ### Time is Running Out In conclusion, Congress must act now to **protect rare disease treatments** and ensure affordable healthcare. The reauthorization of the PRV program and patent reforms are essential for continued innovation and patient access. Therefore, immediate action is needed to pass both the **Creating Hope Reauthorization Act of 2024 (S. 4583)** and the **Medication Affordability and Patent Integrity Act (S. 2780)**. The future of healthcare innovation and affordability depends on it. [OUR LETTER TO SENATE LEADERSHIP](https://www.patientsrising.org/wp-content/uploads/2024/09/Senate-HELP-PRV-and-Patent-Integrity-Patients-Rising-Support-Letter.pdf.) #### Join Us at the Patients Rising Town Hall Want to stay updated and get involved? Patients Rising will host a Town Hall on Federal Issues on **September 26 at 7:00 PM ET**. Join us to discuss these key legislative efforts and learn how you can make a difference. [REGISTER HERE](https://www.patientsrising.org/event/patients-rising-town-hall-meeting-federal/). #### Your Advocacy Matters Ultimately, Congress’s work this week could have a lasting impact on patient access to life-saving treatments. At Patients Rising, we rely on passionate advocates like you to stand with us and help drive the change patients need. By joining our community, you can stay informed, engage with other advocates, and take action to ensure every patient has access to the care they deserve. Your voice matters, and together, we can make a difference. [Join us today](https://patients-rising.circle.so/c/welcome/) and become a part of the movement to improve healthcare for all!  Tags: [Rare Disease](https://www.patientsrising.org/advocacy-updates/tag/rare-disease) ## Related Posts [View All News ](https://www.patientsrising.org/advocacy-updates) [News](https://www.patientsrising.org/advocacy-updates/tag/news) Apr 29, 2025 [Unlocking Hope: New White Paper Calls for Faster Access to Rare Disease Treatments](https://www.patientsrising.org/advocacy-updates/white-paper-rare-disease-treatments-innovation) [Read More ](https://www.patientsrising.org/advocacy-updates/white-paper-rare-disease-treatments-innovation) [Rare Disease](https://www.patientsrising.org/advocacy-updates/tag/rare-disease) Sep 17, 2024 [Rare Disease PRV Reauthorization](https://www.patientsrising.org/advocacy-updates/rare-disease-prv-program-reauthorization) [Read More ](https://www.patientsrising.org/advocacy-updates/rare-disease-prv-program-reauthorization) [Rare Disease](https://www.patientsrising.org/advocacy-updates/tag/rare-disease) Jun 20, 2024 [Patients Rising Signs onto LEAD Coalition Letter in Support of Drugs Such As Donanemab](https://www.patientsrising.org/advocacy-updates/patients-rising-signs-onto-lead-coalition-letter-in-support-of-drugs-such-as-donanemab) [Read More ](https://www.patientsrising.org/advocacy-updates/patients-rising-signs-onto-lead-coalition-letter-in-support-of-drugs-such-as-donanemab) ## Get Updates In Your Inbox Sign up for updates about our patient education, support and advocacy programs and initiatives. 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