One of the best ways to begin advocating is to understand the importance of self-advocacy. By learning the basics of current Alport syndrome information, you’ll be best prepared to educate other patients, your caretaker and physicians, and lawmakers. It’s also vital to help dispel the spread of misinformation within and beyond the Alport community. You can read this article for tips on how to best advocate for yourself. Lastly, remember to share Alport syndrome treatment guidelines with your physicians.
Many individuals affected by a rare disease such as Alport syndrome want to help but aren’t sure where to start. Advocacy can seem intimidating, especially to newly-diagnosed patients, but it’s critical to remember to start where you feel most comfortable and gain experience by meeting others who share the goal of spreading Alport Awareness. It’s important to note in-person and virtual advocacy events include training so you’re never left unprepared!
“You do not have to go to Washington, DC, to advocate. All you have to do is tell your story and make your voice heard. Tell others what it is like to live with Alport syndrome and what we want to see for the future. We do not want another generation of our families to experience kidney failure and hearing loss. To effect change we must speak up – each in our own way.”
Sharon Lagas, Alport Syndrome Foundation Co-Founder and former President
Current Bills You/Your Legislators Can Support:
- H.R. 7506 – New Era for Preventing End-Stage Kidney Disease Act (View a Summary of H.R. 7506)
- H.R.2923 – Living Donor Protection Act of 2023
- S.373 – The BENEFIT Act
- H.R.1730 / S.670 -The STAT Act
- H.R. 5989 – The Precision Medicine Answers for Kids Today Act
Current Alport syndrome advocacy topics include, but are not limited to:
- Early Alport syndrome diagnosis and treatment
- Expanding Alport syndrome research
- The critical importance of organ donation
- The burden of immunosuppressant costs/coverage
- Hearing aid costs/coverage
In the video below, Shannon von Felden, Director, Rare Disease Legislative Advocates, provides tips so YOU can partake in critical, ongoing advocacy efforts no matter your experience level. She is later joined by Andrew Fullerton (National Kidney Foundation), Erin Kahle (American Association of Kidney Patients), Ben Shlesinger (American Kidney Fund), and Taylor Kane (Remember the Girls) who provide additional advocacy insights.
Recent Advocacy Efforts:
Alport Patients Meet with Legislators Virtually
On March 2, 2022, Alport Syndrome Foundation (ASF) staff members Kevin Schnurr (NY) and Afton DeLucca (AL) joined ASF Board members Janine Reed (MI) and Marty Dunleavy (NJ) and patient/advocate December West (OH) to participate in National Kidney Foundation’s 9th Annual Kidney Patient Advocacy Summit. After training sessions, collectively they joined 200+ advocates from all over the U.S. to virtually meet with legislators and staffers.
Meetings involved educating policymakers on the Living Donor Protection Act (S. 511/H.R. 1224), the Improving Access to Home Dialysis bill (H.R. 5466), and the need for greater funding of kidney disease research and awareness/educational programs.
Awareness/Advocacy Efforts During COVID-19
Throughout 2021, ASF Staff and Board members participated in variety of virtual conferences including, but not limited to: NKF’s Kidney Patient Advocacy Summit, NORD’s Rare Summit, Global Genes’ RARE Patient Advocacy Summit, and RDLA’s Rare Disease Week. Staff and Board members also worked closely with National Kidney Foundation and American Kidney Fund (AKF) on projects related to kidney disease genetics and genetic testing. A copy of AKF’s “Unknown Causes of Kidney Disease Project Roadmap,” featuring input from ASF’s Associate Director, Kevin Schnurr, can be found on this page.
Renal Roundtable Recap and Recording
Collaborating with other patient groups NephCure and the American Association of Kidney Patients, and industry partner, Retrophin, ASF Executive Director Lisa Bonebrake and Medical Advisory Committee member Dr. Howard Trachtman presented to congressional policy leaders at a virtual roundtable entitled “Revolutionizing Kidney Care Through Novel Therapies in Rare Nephrology” on September 23, 2020. Leaders from the U.S. Department of Health and Human Services and Congress listened to the challenges and potential solutions put forth by groups of rare kidney disease advocates, nephrologists, and industry representatives working together. A recording of the event can be viewed on NephCure Kidney International’s Facebook Page. Lisa and Dr. Trachtman’s remarks begin at the 36:20 mark. Additionally, download the finalized roundtable recommendations at this link.
Click here for a full summary of ASF’s 2020 Advocacy Efforts.
The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2020, commonly known as the “Immuno Bill,” was signed into law by the President of the United States on December 28, 2020, as part of a larger pandemic-centric legislative package.
Currently, Medicare coverage for renal transplant patients has a 36-month expiration. The new law, which goes into effect in 24 months (January 2023), will help eligible post-kidney transplant individuals gain access to limited Medicare Part B drug coverage for their costly, life-sustaining immunosuppressant medications if they lack other insurance past the 3-year-mark. Exact details of the law will be revealed in an upcoming Centers for Medicare and Medicaid Services (CMS) integration fact sheet. In the meantime, National Kidney Foundation has put together a FAQ on the Immuno Bill.
ASF appreciates all the persistent advocates in the larger renal community who helped make this shared victory possible. It is of great importance to kidney patients and families.
ASF's Patient Engagement Coordinator Afton DeLucca (top right) Virtually Advocates for Kidney Patient Care
No Limits to Advocacy
It’s important to remember advocacy isn’t limited to a select few dates annually. Opportunities to help at the local and state levels and accompanying advocacy tools can always be found on the Rare Disease Legislative Advocates’ website, National Kidney Foundation’s Advocacy website, and at EveryLife Foundation. Be sure to follow ASF social media for upcoming advocacy opportunities as well.
“I have been politically active for more than 50 years and have found that direct contact with our legislators by email, phone, and especially in person has a profound effect on their Interest in issues and policy support. I encourage everyone to take hold of issues that are important to you and your family, and take action to better the kidney community.”
– Janine Reed, ASF Board of Directors
Interested in participating in an advocacy event or have an event suggestion? Do you know a policymaker or legislator looking to raise Alport Awareness? Email [email protected] with the subject line “Advocacy.”