Public policy

Research on the Apolipoprotein L1 (APOL1) Gene and its Impact on African Americans

The American Society of Transplantation would like to call your attention to an emerging need that may impact access to kidney transplantation for African American patients with end stage renal disease (ESRD).

 

What is the problem?

African Americans have higher rates of chronic kidney disease (CKD) and end stage renal disease (ESRD) than individuals of European ancestry[i]. While many factors have been linked to this higher risk of kidney disease, studies published in 2010 have specifically linked non-diabetic kidney disease with two variants in a gene called apolipoprotein L1 (APOL1). More research is needed in this area to determine the impacts of the presence of the APOL1 gene on both organ donation and transplantation, and if other elements or events must be present for disease to occur.

 

Why is this important?

People with ESRD face several significant hurdles on their path to successful kidney transplantation. Timely referral for evaluation and listing for a kidney transplant is critical. Once listed for a transplant, candidates face an acute shortage of donor organs. This means long waits, all the while on dialysis, with increased risk of death and increased cost.

OPTN data indicates that, as of March 8, 2017, there are 32,500 African American candidates awaiting kidney transplantation. Understanding how the APOL1 gene impacts kidney health in African Americans will help the transplant community:

  • Better understand the impact of the presence of the gene in African Americans who wish to become living donors or who consent to deceased donation
  • Better predict the development of CKD and ESRD in these individuals and their outcomes both pre- and post-transplant

The NIH is currently working to establish a multi-center, multi-disciplinary study group, the APOL1 Long-term Kidney Transplantation Outcomes (APOLLO) Research Network, that will focus on the outcome of transplanted kidneys from African Americans and follow recipient outcomes in an effort to learn more about what other factor(s) may lead to the development of kidney disease. Funding for this type of study is critical to informing clinical practice and establishing resources for future studies in this area.

 

How Can We Solve This Problem?

  • Support NIH research on the APOL1 gene, to learn more about the impacts of this gene on the African American population
  • Increase the percentage of research dollars from the NIH spent on kidney disease and transplantation to match the percentage of the Medicare spent on ESRD care. More research will improve outcomes of patients with chronic kidney disease and those with transplants.

 

 

Approved by the AST Executive Committee on April 4, 2017

 

For a printable PDF version of this document, please click here.

 

 

[i] Kiberd BA, Clase CM. Cumulative risk for developing end-stage renal disease in the US population. J Am Soc Nephrol 2002; 13: 1635–1644.