Policy decisions shape the future of Alpha-1 Antitrypsin Deficiency diagnosis, treatment, and research funding. When you contact your elected representatives and government officials, you become a powerful advocate for the millions of people affected by AATD—both diagnosed and undiagnosed.
Your advocacy matters. Policymakers need to hear from constituents like you.
Your advocacy can influence critical policy areas:
Universal Newborn Screening
Advocate for legislation requiring Alpha-1 testing for all newborns, enabling early diagnosis and intervention before symptoms develop.
Research Funding
Support increased federal funding for Alpha-1 research through the NIH, CDC, and other agencies focused on rare diseases and genetic conditions.
Healthcare Access
Promote policies ensuring insurance coverage for Alpha-1 testing, augmentation therapy, and specialized care regardless of employment status or pre-existing conditions.
Rare Disease Recognition
Expand recognition of Alpha-1 as more than a "rare disease"—it's a rarely diagnosed condition affecting millions who remain unidentified.
Medical Education
Support requirements for Alpha-1 awareness training in medical schools and continuing education for healthcare providers.
Personal stories from patients, families, and caregivers are the most compelling form of advocacy. When you share how Alpha-1 has affected your life, policymakers understand the human impact behind the statistics.
U.S. House of Representatives
Find and contact your Representative:
https://www.house.gov/representatives
Why contact? Representatives introduce and vote on legislation affecting healthcare, research funding, and insurance regulations.
U.S. Senate
Find and contact your Senators:
https://www.senate.gov/senators/senators-contact.htm
Why contact? Senators serve on committees that shape healthcare policy and appropriate funding for medical research.
The White House & President
Contact the President:
https://www.whitehouse.gov/contact
Why contact? The President sets national health priorities and can direct federal agencies to prioritize Alpha-1 initiatives.
State Governors
Find your Governor:
https://www.usa.gov/state-governor
Why contact? Governors can implement state-level newborn screening requirements and direct state health departments to prioritize Alpha-1 awareness.
State Legislators
Contact your state representatives and senators through your state government website.
Why contact? State legislatures control state healthcare regulations, insurance mandates, and public health initiatives.
U.S. Government Departments & Agencies
A-Z Directory:
https://www.usa.gov/federal-agencies
Key agencies for Alpha-1 advocacy:
State, Local, and Tribal Governments
Find government contacts:
https://www.usa.gov/state-tribal-governments
Be Personal
Share your Alpha-1 story. Explain how the condition has affected you, your family, or your community. Personal narratives resonate far more than statistics alone.
Be Specific
Clearly state what action you're requesting:
Be Concise
Respect their time. Keep letters to one page and calls to 2-3 minutes. State your request clearly and explain why it matters.
Be Local
Emphasize that you're a constituent. Mention your city or county. Explain how Alpha-1 affects your local community.
Be Respectful
Even if you disagree with their previous positions, maintain a respectful, professional tone. You're building a relationship for ongoing advocacy.
Be Persistent
Follow up. Send thank-you notes when they support Alpha-1 initiatives. Continue the conversation over time.
Use these key messages in your advocacy:
✓ "Alpha-1 Antitrypsin Deficiency is not rare—it's rarely diagnosed. Millions may be living with undiagnosed AATD."
✓ "Universal newborn screening could identify Alpha-1 patients decades before symptoms develop, preventing irreversible organ damage."
✓ "Early diagnosis allows for life-saving interventions and helps families make informed decisions about genetic risks."
✓ "Alpha-1 research is underfunded relative to its prevalence and impact on multiple organ systems."
✓ "Many Alpha-1 patients endure years of misdiagnosis, accumulating unnecessary healthcare costs before receiving proper treatment."
✓ "Insurance coverage for Alpha-1 testing and treatment must be protected and expanded."
1. Choose Your Target
Start with your own Representative and Senators. They're most responsive to constituents.
2. Select Your Method
3. Craft Your Message
Use the talking points above, but personalize with your own story and specific asks.
4. Follow Through
Track responses. Follow up if you don't hear back within 2-3 weeks. Thank those who respond positively.
5. Stay Engaged
Join the Mark Egly Foundation's advocacy network to receive alerts about timely opportunities to contact policymakers on Alpha-1 issues.
Letter Templates
[Coming soon: Downloadable letter templates for various Alpha-1 policy issues]
Call Scripts
[Coming soon: Talking points and scripts for phone advocacy]
Meeting Guides
[Coming soon: How to prepare for and conduct in-person meetings with policymakers]
Subscribe for Advocacy Alerts
Receive notifications when time-sensitive legislative opportunities arise requiring immediate constituent action.
Connect With Other Advocates
Join our community of Alpha-1 advocates to share strategies, celebrate victories, and coordinate campaigns.
Policy change doesn't happen overnight, but it does happen—one phone call, one letter, one meeting at a time. When thousands of Alpha-1 patients, families, and supporters make their voices heard, policymakers listen.
Your advocacy today creates a better tomorrow for everyone affected by Alpha-1 Antitrypsin Deficiency.
"Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has."
— Margaret Mead