Petition to the Cystic Fibrosis Foundation: Protect CF Patient Rights to Care and Treatment Without Threats

 

To the Leadership of the Cystic Fibrosis Foundation (CFF),

 

We, the undersigned, write to express our deep concern about the current practices at some CF-accredited clinics, which threaten to withhold vital medications, such as Trikafta, or terminate care for cystic fibrosis (CF) patients who do not attend clinic appointments on a rigid schedule.

 

We believe that these punitive practices harm patients and violate their rights to autonomy and equitable access to life-saving treatment. We call on the CFF to take immediate action to ensure that accredited CF clinics across the country adopt policies that protect patients from such threats.

 

Our concerns are as follows:

 

 1. Patient Autonomy: CF patients and their families are best positioned to understand their individual needs. Forcing patients to attend appointments on a rigid schedule fails to account for personal circumstances, such as transportation challenges, work responsibilities, or feelings of stability. Patients should be empowered to make informed decisions about their own care schedules without fear of punishment.

 2. Access to Life-Saving Medication: Trikafta is a revolutionary treatment that has improved the lives of many with CF. Withholding this essential medication as a penalty for missed appointments is unethical and endangers the health and well-being of patients who rely on it for survival.

 3. Mental and Emotional Health: CF patients already face significant emotional, psychological, and physical challenges in managing a lifelong chronic illness. Threats of losing care or treatment create additional stress and may lead to avoidance of healthcare altogether, exacerbating health disparities and furthering negative outcomes.

 

We, therefore, request that the Cystic Fibrosis Foundation:

 

 • Mandate that all CF-accredited clinics refrain from threatening to withhold Trikafta or other essential medications as a punishment for missed appointments.

 • Establish clear guidelines that protect patients from the threat of care termination based on non-compliance with a rigid appointment schedule.

 • Promote patient-centered care by allowing patients to attend appointments according to their individual needs and circumstances, rather than adhering to a universal three-month requirement.

 

We believe that every person with cystic fibrosis deserves access to compassionate, patient-centered care that supports their overall well-being. Punitive measures that threaten essential treatment or care undermine the values of trust and support that should be at the core of CF healthcare.

 

We respectfully urge the CFF to take immediate action to protect the rights and health of all CF patients by ensuring that accredited clinics adopt patient-friendly policies that prioritize care over punishment.

 

Thank you for your attention to this critical issue.