Mark Egly Foundation

Work & Financial Considerations

Living with Alpha-1 Antitrypsin Deficiency (AATD) can present unique challenges in the workplace and create financial concerns for individuals and families. Understanding your rights, available resources, and the importance of early diagnosis can make a significant difference in maintaining both your health and financial stability.

The Critical Importance of Early Diagnosis

Early detection changes everything. When Alpha-1 Antitrypsin Deficiency is identified early in life and properly managed with appropriate treatment, individuals have the opportunity to:

  • Maintain normal or near-normal life expectancy
  • Live with vitality and energy
  • Continue working in their chosen careers
  • Avoid or minimize disease progression
  • Plan proactively for their health and financial future

When Diagnosis is Delayed

Unfortunately, many people with AATD remain undiagnosed for years—sometimes decades—often receiving misdiagnoses of common conditions like asthma or COPD. Delayed diagnosis can lead to:

  • Advanced lung or liver disease before treatment begins
  • Reduced work capacity and potential disability
  • Increased medical expenses
  • Limited treatment options
  • Emotional and financial stress for families

Workplace Considerations

Your Rights as an Employee

If you have been diagnosed with AATD, you may be protected under various employment laws:

  • Americans with Disabilities Act (ADA): May provide protections and require reasonable accommodations
  • Family and Medical Leave Act (FMLA): Allows eligible employees to take unpaid, job-protected leave for medical reasons
  • State disability laws: Additional protections may exist depending on your location

Reasonable Accommodations

Depending on your condition, reasonable workplace accommodations might include:

  • Flexible work schedules for medical appointments
  • Remote work options to avoid respiratory irritants
  • Modified duties to reduce physical strain
  • Clean air environments free from dust, fumes, or chemicals
  • Additional break time for breathing treatments or rest

When to Disclose

The decision to disclose your AATD diagnosis to your employer is personal and depends on many factors. Consider disclosure when:

  • You need workplace accommodations
  • Your condition affects your job performance
  • You require time off for medical treatment
  • You're seeking protection under disability laws

Financial Resources and Support

Insurance Coverage

  • Health Insurance: Understanding your policy's coverage for AAT replacement therapy and related treatments
  • Life Insurance: Obtaining coverage before diagnosis or through guaranteed issue policies
  • Disability Insurance: Both short-term and long-term disability options
  • Medicare/Medicaid: Eligibility and coverage for AATD treatments

Financial Assistance Programs

Multiple resources may be available to help manage the costs of AATD:

  • Patient assistance programs from pharmaceutical companies
  • Non-profit organizations offering financial aid
  • State and federal assistance programs
  • Clinical trial participation (which may provide free treatment)
  • Disease-specific foundations and advocacy groups

Planning for the Future

Consider working with financial and legal professionals who understand chronic illness to:

  • Create comprehensive health and financial plans
  • Establish advance directives and healthcare proxies
  • Explore Social Security Disability Insurance (SSDI) if appropriate
  • Plan for potential career transitions
  • Maximize available benefits and tax deductions

The Mark Egly Foundation's Mission

The Mark Egly Foundation is dedicated to transforming the standard of care for Alpha-1 Antitrypsin Deficiency. Our vision is a future where:

  • Universal screening identifies AATD early, before significant damage occurs
  • Every person with AATD has access to proper diagnosis and treatment
  • Patients can maintain their careers, financial stability, and quality of life
  • Innovative treatments prevent disease progression entirely

Early diagnosis is life-altering. By advancing research, advocating for improved screening protocols, and supporting patients and families, we're working to ensure that no one faces the devastating consequences of delayed diagnosis.

Resources and Next Steps

If you're facing work or financial challenges related to AATD:

  1. Speak with your healthcare team about your work environment and any needed accommodations
  2. Connect with AATD advocacy organizations for peer support and resources
  3. Consult with a social worker who can help navigate benefits and assistance programs
  4. Document everything related to your diagnosis, treatments, and workplace needs
  5. Know your rights and don't hesitate to advocate for yourself

The Mark Egly Foundation is here to support you. Together, we can ensure that Alpha-1 Antitrypsin Deficiency is detected early, treated effectively, and managed in ways that allow everyone to live full, productive lives.