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Patient Perspectives on Self-Advocacy

The most important members of your health care team are you and your family. One way to ensure you and your loved ones are receiving the best care possible is for you to take an active role in your care by working with your medical team and learning about your treatment.Sometimes it may also be necessary to enlist the help of a family member or friend to help advocate for your health. Below Diane and Tim tell their personal stories of advocating for improved health for a loved one with Alport syndrome.

Medical Care Advocacy
One of the best things any renal patient can do is begin to network immediately upon diagnosis. Speaking with other kidney patients, doctors and health professionals is a great way to educate yourself. Do not be afraid to spread word of your condition. It will help raise awareness and may lead you to meeting someone of immense value, such as your life-saving kidney donor!

Tony and Diane’s Story
My best friend received the gift of life this week.  Through his experiences I have learned the importance of telling your story/situation, far and wide, to everyone you know and meet, every stranger on the street or grocery store. Tony found out he had Alport syndrome ten years ago and has been on dialysis for nine years.  Tony and I met through an online dating site three years ago.  He described his need for a transplant and said he was looking for friends.  I responded, “I understand. Let’s meet for coffee”.  I’ve been his partner and health advocate ever since. He thought he was getting good care, but I could see his health was declining two years ago.  I got involved with the doctor and dialysis center and we started asking questions. Changes were made that were best for Tony. Don’t get too settled or think the way things are is the way it has to be.  Don’t accept answers that don’t make sense. Don’t give up.  Don’t be afraid to ask questions about your health. Be your own advocate. Have a friend or loved one be your advocate. They can ask the hard questions like I did.  Tony was ready to give up back then but by not accepting things as they were Tony became healthy again. The doctor and dialysis centers do not always prepare you for transplant. Tony has seen this after nine years of treatment and now receiving a transplant.   

Tony received a call on Wednesday from a friend who let us know her brother-in-law had passed away.  She wanted Tony to receive one of Mike’s kidneys. Wow! After waiting for nine years on dialysis life is amazing. Tony was at the best health last week.  His September labs were perfect. The kidney was a perfect match and he is doing well today. Keep telling your story. Ask questions. Get an advocate if you need help.  Tony took control of the situation and his health.  Don’t accept what you don’t understand. The road to transplant can be long and painful, but hang in there. The perfect kidney is out there for you, just like it was for Tony.

Medication Advocacy
Most renal patients are used to taking multiple prescriptions in order to maintain optimal health. Dialysis patients normally take daily blood pressure medication and “binders” with their meals to keep phosphorous levels in check. Renal transplant eliminates the need for some pills, like the binders, but introduces the necessity of others, most notably, immunosuppressants. These medications are absolutely essential to the longevity of your new kidney as they prevent your body from rejecting the newly transplanted organ.

The biggest difference between prescriptions before and after transplant is the cost. Some immunosupressants are not covered by insurance and can cost as much as $2,000 a bottle so it is vital to work and advocate closely with your renal team and social worker to ensure a happy kidney AND wallet.

Lisa and Tim’s Story
After getting married, Lisa’s disability Medicare insurance was taken away, leaving us to pay a large copay for her anti-rejection meds. At the time she was taking Rapamune, which has a very large price tag – the copay was about $1,000 every three months! After struggling for months and looking every direction for help, I contacted Pfizer (the manufacturer) and they had many different copay assistance programs. Many were based on income and we did not qualify because I made too much money (about $70K a year). After numerous calls I found one that would help, and they picked up the remainder after insurance! We received this help for all of one month before Lisa received the kidney transplant from me and we went back on Medicare for 3 years. Now that period has again expired and again we scrambled to afford the copay for Myfortic and Prograf, a total of about $1,200 every three months.  I contacted the social worker at our transplant hospital, who gave us medical assistance cards for help with the copays. These programs also come from the manufacturers of the meds and cover enough monthly to leave us not having to pay anything out of pocket.


These are just a few examples of ways patients use self-advocacy to ensure they receive the best treatment possible. Don’t be afraid to tell your doctor about problems you experience, either physically or with access to the prescribed treatments. Your willingness to speak up can have a significant impact on the outcomes of your care.