12/11/2025
Access to pulmonary hypertension (PH) treatments remains critically
limited—often due to a lack of PH expert centers and specialists, late
diagnosis, inadequate insurance coverage, low patient health literacy, and
restricted availability of advanced therapies.
Today, we advocate for change.
Every PH patient deserves access to a specialized PH center equipped to
provide comprehensive diagnostics and therapeutics. This can include
genetic testing and mechanical interventions for the treatment of chronic
thromboembolic pulmonary hypertension (CTEPH). Transplant options
must also be prioritized, especially for patients with pulmonary arterial
hypertension (PAH) who fall into higher-intermediate risk categories. To
ensure holistic care, patient-reported outcome measures should guide
treatment decisions, encompassing psychological support and
rehabilitative services.
Supportive care is essential. Many PH patients face significant barriers to
employment and self-sufficiency due to the nature of their condition. Job
loss, financial hardship, and bureaucratic obstacles further erode their
ability to live a meaningful life—even when their disease is medically
managed.
Patient associations and peer support networks are vital. They improve
access to care, therapies, and clinical trials, while offering patients a
chance to connect, share experiences, and advocate collectively for
access and better outcomes.
Access means life - let’s make it universal.
