14 Ways to Help Fellow Patients Available in PDF About 400,000 patients in the United States have chronic kidney disease (CKD), requiring either ongoing dialysis treatments or a kidney transplant to sustain life. Many patients who enter the Medicare End-Stage Renal Disease Program are apprehensive or even frightened about the prospect of living the rest of their life with a chronic disease. The good news is that the therapies used to treat CKD have improved dramatically, and many patients live long, productive, and extremely rewarding lives. weKAN strongly believes that patients need to be knowledgeable about both CKD and the life-saving treatments that they are receiving. A knowledgeable patient is able to actively participate in the decisions that affect their own care, which often leads to more independence and a happier and healthier quality of life. The challenge that faces many patients is how to find educational information that is developed by patients for patients. Some dialysis facilities have “patient-to-patient” programs in which experienced patients share their knowledge and experience with new patients. Such programs can help to decrease the fears and anxieties that most new patients experience, while also providing them with knowledge from the most valuable perspective—a fellow patient! If a “patient-to-patient” program is not available, speak with the health care professionals at your facility and volunteer to discuss CKD with new patients. Free and experienced assistance with patient education is generally welcomed! In addition to helping fellow patients adjust to CKD, patients can also educate lawmakers, the media, and the public about dialysis and kidney transplantation. The best way for others to learn about CKD is from us—the patients who are affected! You can help shape how others view CKD, and potentially have a positive influence on the individuals who make decisions about the care that patients receive. The following are 14 ways your efforts can help fellow patients who have chronic kidney disease. 1. Educate Lawmakers State and national legislative bills can have a profound effect on the quality of care that is provided for patients on dialysis, thereby positively (or negatively) affecting their quality of life. Like the general public, many lawmakers at the local, state and national levels know little about the dialysis process. A knowledgeable patient can be very influential in helping these elected officials learn about CKD and the impact that their votes have on the care and quality of life experienced by patients with CKD. There are many ways that you can help to educate your elected officials. Letters and e-mails that provide lawmakers with an overview of important issues that affect patients with CKD—and you in particular—can be very influential. In-person meetings are also very effective. One good way to meet elected officials face-to-face is to attend Town Hall meetings, which are often held locally to allow constituents the opportunity to talk with their elected officials. You can also call the local office of your elected officials and arrange an appointment to discuss important issues that affect the lives and health of kidney patients who are constituents in that lawmaker’s district. (Many members of Congress set aside regular times to meet with their constituents.) Remember—lawmakers are elected officials who represent you, and they need to know what issues you feel are important! Contact information for your congressional representatives along with samples of letters you can write is available at www.RSNhope.org. 2. Educate the Media Patients and family members can act as “local CKD media representatives” to make sure the local media provides information to the public about dialysis and kidney transplantation. The following are some tips on how to educate the media: Use a variety of methods to get the word out about dialysis and transplantation (TV, radio, print). Let your passion and concern about improving the lives of kidney patients guide you. Obtain a current media directory from the library or Internet. Make phone calls to discover the names of health, feature, city or assignment editors of local newspapers and journals. After getting a reporter on the phone, introduce yourself and explain that your objective is to make sure the public understands dialysis and kidney transplantation. Ask the person if he or she has time to talk now, or if you should call back later (set a date and time). Let the person know you are aware of his or her time limitations. Ask how you can help get a story written and printed. Let reporters and assignment editors know that CKD is a major health epidemic in the United States, especially among African-Americans and other minorities. To catch their attention, offer accurate statistics about the number of patients with CKD in the United States, and how many individuals die each year because of an inability to get a kidney transplant. Offer data (press releases, articles, websites, etc.) that you believe would be helpful to educate the reporter. Build a good relationship with reporters and editors. Become known as a reliable source of timely and important information about CKD. If you are interviewed, call or write a letter to the journalist within 24 hours to express your appreciation and ask them to contact you if there are further questions. 3. Educate the Public It is important for the general public to know about the risks of kidney disease, including the importance of early detection of diabetes and high blood pressure (the two leading causes of kidney disease), and how to keep these conditions under control. There are many ways that you can get involved in helping to educate the public about kidney disease. Many public service organizations such as the Kiwanis Club or hospitals welcome guest speakers (like you!) that provide education about important public health issues such as CKD. You can also write letters to the editor of your local newspaper, particularly if you are responding to an article, film, or television show that mentioned kidney disease. In the letter you can either confirm or correct the information that was presented, relate your own experiences about CKD, and provide advice for others (especially those who are at high risk for CKD). Remember that you are writing about yourself—patients are the best role models for letting others know about CKD. 4. Get Involved in Professional Organizations so the Voice of Patients with Kidney Disease is Heard. There are many local and national organizations that welcome patient participation, including the American Association of Kidney Patients (AAKP), local ESRD Networks, and the National Kidney Foundation (NKF) to name only a few. Please visit our web site at RSNhope.org for a more complete listing of professional organizations. 5. Organize “Meet and Greet” Coffee Meetings or a Support Group A restaurant or coffee shop is often an ideal place to organize “meet and greet” coffee or patient support group meetings. Other no-cost places where you could hold a meeting include a patient’s home or a local community center. These informal gatherings can be especially valuable for new patients, who are eager to hear useful tips on everything from caring for a vascular access to diet and exercise. 6. Attend and Participate in Educational Meetings for Patients Some professional groups partner with patients to organize patient-focused educational meetings. These meetings typically offer an opportunity for patients, family members, and other interested individuals to come together for a full day, share a meal, and hear expert speakers on a variety of topics. Patients are often welcomed as speakers who can share their firsthand experiences with dialysis and transplantation. 7. Realize that “One Friend Can Make a Difference” Sometimes just being a friend to one or two fellow patients and sharing with them what you know about dialysis and/or kidney transplantation is enough to make them feel more comfortable about becoming a patient with CKD. New patients in particular often benefit just by knowing that they are not alone and that others share their same worries and concerns. Take the initiative and introduce yourself to a new “patient friend.” Remember, “One friend can make a difference.” 8. Encourage Organ Donation There are more than 90,000 individuals on the nation’s waiting list for life-saving organs, and 17 people die each day before they can be transplanted. The need to educate the public on the importance of organ donation and its benefits is greater than ever, and you can be a role model and educator to friends, family, lawmakers, the media, and the public. 9. Participate in Fund Raising Find creative ways to raise funds for educational programs and services that improve the quality of life for patients with kidney disease, many of whom are unable to participate due to income constraints. If you can help offset the costs of educational materials, patient meetings, and other opportunities through local fund raising activities, more patients can benefit from these services. 10. Determine if a Clinical Trial is Right for You A clinical trial is a research study that is used to test new therapies. A clinical trial can be the safest and fastest way to discover treatments that will improve the health of patients with CKD—now and in the future. A typical medical center is often participating in several clinical trials, and some of these trials involve patients with CKD. Your health care team will be able to tell you about any clinical trials at your facility. However, before you agree to become involved in a clinical trial, understand what the trial is trying to accomplish, the potential benefits of the new therapy, and the potential side effects. Make sure that the clinical trial is right for you! 11. Become an Author Many kidney-related trade journals, Internet sites and newsletters are willing and even eager to print articles that are written by patients. Kidney-oriented publications are especially receptive to articles that contain helpful tips that will help improve the quality of life of other patients. Renal Support Network welcomes patient-writers for our newsletter, weKAN Live & Give, and for our health information website, KidneyTimes.com. See RSN’s writer’s guidelines at www.RSNhope.org. 12. Become a Speaker Sharing your story and point of view can have a dramatic effect on how others view CKD, and many organizations welcome hearing a presentation given by a patient. If you have limited experience speaking to a group, it is normal to feel a bit anxious. However, you can overcome anxiety and learn how to be a more effective speaker by joining an organization such as Toastmasters (www.toastmasters.org), where you can receive great tips and practice public speaking in a friendly, non-threatening environment. 13. Remember to Always Vote We see our elected leaders on television, read about them in the newspapers, and occasionally encounter them in person. Most of the time our elected officials are doing the talking: They tell us about themselves, their plans, their policies, and their problems. Election season turns things around. Now it’s our turn to speak, and our leaders need to listen. They know that to get our votes they need to understand and respond to our interests and concerns. Make sure that your voice is heard at the ballot box! 14. Take Care of Yourself Becoming involved in your own care and improving your own health often inspires others to do the same. Learn all you can about kidney disease and be an active participant in your day-to-day health decisions. Long-term patients know that knowledge is power. Remember that although we are individuals who happen to have a chronic disease, our lives are not defined by disease, but by hope.