Why We Asked the American Thoracic Society to Strengthen Patient Education for Lung Disease Care

At the Lung Transplant Foundation (LTF), advocacy means speaking up early, before preventable complications take hold, and before patients are left learning critical information too late in their journey.

That’s why our Advocacy Committee recently sent a formal letter to the leadership of the American Thoracic Society (ATS), requesting the development of a comprehensive guideline document or educational path to support pulmonologists in providing early, standardized patient education in four critical areas:

• Skin cancer prevention and screening
• Bone density support and Osteoporosis screening
• Fertility preservation for patients of childbearing age
• Vaccination timing and optimization

These topics are central to long term health and quality of life for people living with advanced lung disease and those who may one day require a lung transplant.

Why This Matters—Before Transplant Is Ever Mentioned

Through our work supporting lung transplant recipients, caregivers, and families, Lung Transplant Foundation consistently hears a troubling pattern: patients often learn about the long-term consequences of immunosuppression and steroid use only after they are referred for transplant evaluation.

By that point, many individuals have already been exposed for years to high-dose corticosteroids and other immune modifying therapies—without adequate education or referral to specialists who could help mitigate risk.

The data is clear:

• Solid organ transplant recipients face dramatically higher rates of skin cancer compared to the general population
• Osteoporosis is common even before lung transplant, increasing fracture risk and post-transplant complications
• There is little consistency in how fertility and family planning are addressed for lung transplant candidates and recipients
• Vaccine responses are significantly reduced after transplant, making early immunization critical

Yet education and prevention strategies for these risks are often delayed.

Our Ask: Start These Conversations at Diagnosis

In our letter to ATS leadership, we asked for guidance that encourages pulmonologists to begin education and referral at the time of diagnosis for lung diseases that:

• Require long-term immunosuppression or corticosteroids, or
• Are likely to progress to lung transplant

Starting these conversations earlier can:

• Reduce preventable complications like aggressive skin cancers and severe bone loss
• Preserve future family-building options for patients who want them
• Improve protection against vaccine-preventable illnesses
• Ultimately lead to better lifelong outcomes, whether or not a patient ever undergoes transplant
  

This approach supports not only transplant patients but all people living with serious lung disease.

Advocacy Rooted in Patient Experience

This letter reflects what the lung transplant community has shared with us time and time again: patients deserve proactive, transparent education, not reactive care after harm has already occurred.

We are grateful to the American Thoracic Society for its longstanding leadership in pulmonary medicine and for considering this request. Lung Transplant Foundation remains committed to partnering with professional societies, clinicians, and patient advocates to ensure that care models evolve alongside patient needs. Because when education starts earlier, outcomes can be better.