Due to the possible harm and the lack of medically proven benefit to those with the disease, we strongly recommend that people with CF not participate in any stem cell or cell therapy treatments unless conducted in a clinical trial approved by the U.S. Food and Drug Administration (FDA).

Although there have been recent advances in stem cell research, very little is known about the safety and effectiveness of stem cell therapies in treating CF or any other lung disease. Experimental procedures conducted in some countries may not meet FDA safety standards for approved therapies and closely monitored clinical trials.

The claims from companies offering stem cell treatments to treat CF have not been validated by experts in the medical or research fields or by regulatory agencies responsible for ensuring that drugs and medical procedures are safe and effective. Our concern about the inaccuracy of these claims is shared by others in the medical and research community who are committed to improving the health and longevity of people living with CF.

Potential risks associated with experimental procedures, such as stem cell treatments, include rapid worsening of lung disease, the development of serious complications, including stroke and the possibility of death, and the lack of proper follow-up should medical complications arise.

We encourage people with CF and their families to discuss the potential risks and benefits of all CF treatments with a doctor and care team who have specialized CF training.

For those who would like to learn more about research on stem cells and the potential future use of stem cells for treating lung diseases like CF, the following health organizations provide reliable information:

• International Society for Stem Cell Research (ISSCR)
• National Institutes of Health  
• International Society for Cellular Therapy  
• California Institute for Regenerative Medicine