Contact Your Policymakers

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:

• National Institutes of Health (NIH) - Research funding
• Centers for Disease Control and Prevention (CDC) - Public health initiatives
• Food and Drug Administration (FDA) - Treatment approvals
• Health Resources & Services Administration (HRSA) - Healthcare access programs

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:

• "Please support H.R. [number] which funds rare disease research"
• "Please co-sponsor legislation requiring universal newborn screening for Alpha-1"
• "Please ensure Alpha-1 augmentation therapy remains covered under insurance regulations"

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

• Phone calls often have the most immediate impact
• Emails create a written record and can be forwarded to staff
• Letters show serious commitment and effort
• In-person meetings at district offices are most powerful but require advance scheduling

1. Craft Your Message Use the talking points above, but personalize with your own story and specific asks.

2. Follow Through Track responses. Follow up if you don't hear back within 2-3 weeks. Thank those who respond positively.

3. 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