Understanding Dialysis Patient Perspectives on Advocacy.

Iapplaud the study by Schober et al in this issue of AJKD, which focuses on patients treated with dialysis to assess their attitudes and overall potential to engage in advocacy related to chronic kidney disease (CKD). As the study states, even though more than 25 million Americans live with CKD and more than 400,000 require maintenance dialysis therapy for kidney failure, funding for CKD research is relatively low and public awareness of the impact of the disease is limited. Although the Renal Support Network (RSN)—a national, patient-led, nonmedical support and advocacy group for individuals with CKD—was not mentioned by Schober et al, its members have first-hand knowledge of the advocacy limitations voiced by participants in this study. As founder and President of RSN, I believe that understanding dialysis patient perspectives on advocacy requires consideration of group dynamics, institutional support, and characteristics of the illness. RSN has focused specifically on nonmedical (eg, personal, relational, and social) patient experiences, needs, and grass-roots group organization. I founded RSN in 1993 with the main objective of providing hope, connection, and education tomy peers. RSN affirms the current study’s contention that “patients who are more active in their care are more successful in self-management behaviors, such as medication adherence, and have better outcomes, including greater quality of life and fewer hospitalizations, compared with less activated patients.” Having lived with CKD since 1968, when I was diagnosed at 2 years of age, I have had many opportunities to witness peers advocate for the best care and others not take the initiative to improve their well-being. The latter attitude almost always leads to a worse outcome! I believe people treated with dialysis are encouraged to take steps toward greater involvement in advocacy when they are appropriately recognized and rewarded for meeting basic obligations, which pose a significant burden. They should feel a sense of accomplishment and appreciation for showing up for dialysis treatments and physicians’ appointments, taking medications on schedule, adhering to fluid and diet regimens, scheduling early fistula placements, inserting their own needles, and doing their part to stay out of the hospital or to get on the kidney transplant list. In addition, home dialysis and in-center self-care should always be the favored options for dialysis therapy initiation, rather than the usual default of assisted in-center