ICCAC Blocks LVADStrong, Undermining Patient Trust

LVADStrong and its founder were recently blocked from ICCAC’s social media after speaking out about a Halloween-themed post from the organization. ICCAC, the International Consortium of Circulatory Assist Clinicians, shared a virtual event promoting “the grossest, scariest, and goriest LVAD patient stories” to be shared among VAD coordinators. While intended for professional discussion, this post raises serious questions about patient trust, empathy, and the culture of care in the LVAD community.

For patients living with a left ventricular assist device (LVAD), trust in healthcare teams is essential. Every day, patients rely on their coordinators, nurses, and clinicians to manage complex medical devices, monitor their health, and provide guidance during crises. A post like ICCAC’s — celebrating frightening or gruesome patient experiences — does not inspire confidence. Instead, it risks alienating patients and caregivers, who may wonder whether the people responsible for their safety truly respect their humanity.

LVAD patients face unique challenges that go far beyond the medical management of their devices. Many experience long-term physical discomfort, emotional isolation, and mental health stressors. Studies have shown that LVAD patients are at higher risk of depression and, in some cases, suicidal thoughts, highlighting the urgent need for supportive, empathetic care. When organizations focus on shocking or sensationalized stories rather than addressing these real challenges, patients are left feeling unseen and undervalued.

The blocking of LVADStrong and its founder underscores a larger issue: the importance of accountability and transparency in healthcare advocacy. Speaking out against practices that undermine patient trust is not an attack — it is part of the work necessary to improve care and ensure that patient voices are heard. Advocacy organizations, patients, and caregivers must be able to raise concerns without fear of censorship. The silencing of advocates only emphasizes why patients may lose faith in their healthcare teams.

LVADStrong’s mission is to amplify patient and caregiver voices at national conferences and public forums, ensuring that their experiences inform clinical practice, industry discussions, and policy decisions. This work includes advocating for better mental health support, improved patient education, and access to resources for those living with mechanical circulatory support. By providing a platform for patients to share their stories in a respectful, educational, and empathetic environment, LVADStrong seeks to restore trust and foster understanding among clinicians, coordinators, and the broader medical community.

The LVAD community relies heavily on support systems, including caregivers, social services, and sometimes government assistance. Many patients face financial and logistical challenges, making empathy and practical support from healthcare providers even more critical. Events that prioritize entertainment over compassion, or that mock patient experiences, undermine these support networks and risk deepening the isolation many patients already feel.

Living with an LVAD is about far more than the device itself. It is about navigating the challenges of daily life while managing a complex medical condition, often alone in the quiet of night. Patients need to know that their care teams are trustworthy, responsive, and compassionate. LVADStrong believes that patient-centered care must place humanity, empathy, and respect at the center of every interaction. Silencing voices that call attention to lapses in these values is unacceptable.

LVADStrong will continue to advocate for patient voices, share real stories, and hold organizations accountable. Patients and caregivers deserve platforms where their experiences are honored, their challenges addressed, and their trust restored. By supporting LVADStrong, donors and allies help ensure that patient advocacy, empathy, and accountability remain at the forefront of LVAD care.

💚 Support patient voices and advocacy today: https://givebutter.com/LVADLives