As my husband and I traveled from Mooresville to Washington, D.C., last month, the phrase, “We, the people” resonated. My husband and I were “the people” as we prepared to visit our members of Congress as representatives of the PKD (Polycystic Kidney Disease) Foundation.Polycystic kidney disease has ravaged my family. Nine family members have died of it, including my mother. My sisters now battle the disease; in April one of my cousins died suddenly of PKD complications, his three children at his deathbed, and each of them has inherited the disease. There are now 19 family members with the disease.PKD causes fluid-filled cysts to grow in the kidneys, eventually leading to kidney failure. It is the most life-threatening genetic disease and does not skip generations. If one parent carries the gene for PKD, the child has a 50 percent chance of inheriting it. One in 500 people has the dominant form of PKD (autosomal/dominant PKD). Ten percent of cases of PKD are caused by gene mutations. There is no cure. The only treatments are dialysis and/or transplantation. I am the only one of my parent’s children not to have inherited the disease. Many people ask me whether I feel guilty. I don’t. I feel blessed. Gratitude propels me to help be a voice for people with this disease. The mission statement of the PKD Foundation is “to promote programs of research, advocacy, education, support and awareness in order to discover treatments and a cure for polycystic kidney disease and improve the lives of all who are affected by it.”In a nutshell, that’s why we went to Capitol Hill: to talk about legislation that would help people suffering from kidney disease. I telephoned and emailed N.C. Sens. Richard Burr, R-N.C., and Kay Hagan, D-N.C., and also my congressman, Rep. Robert Pittenger, R-N.C., asking for appointments. Along with hope for a cure, one of the issues important to us is the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2013. It would improve the quality of life for people who suffer from kidney disease, but not just PKD patients.Untreated high blood pressure and diabetes are the leading causes of kidney failure. Losing access to medications that suppress the immune system’s responses places patients at a higher risk for losing their new kidney and being placed back on dialysis. That situation has a higher cost to taxpayers and does not improve the patient’s quality of life. Transplant patients receive anti-rejection drugs for three years, but must take them for the rest of their lives. After the three years, they are on their own or their insurance pays for the medication. One of my sisters pays $900 per month for her medication, and that’s after insurance has paid its part. It costs about $19,000 per year for the medication a transplant recipient takes. If a patient cannot afford his medication and loses his transplanted kidney, he goes back on dialysis, which costs Medicare between $60,000 and $100,000 per year. Another transplant would be needed. That would cost more than $110,000. And that’s not even to mention the contribution to society that a successful transplant patient makes. Our goal was to point out to our elected federal officials that it is more cost-effective to continue coverage of the medication.The day before our visit to Capitol Hill, the PKD Foundation provided professionals to train 77 of us, representing 21 states. My husband and I were the only representatives from North Carolina. Retired Rep. Stokes, D-Ohio, “play-acted” a sort of dress rehearsal with volunteers about what to expect and how to present our stories. In his thoughtful and kind manner, he reminded us over and over again not to feel intimidated but to remember that our congressmen work for us. That is the crucial part of this experience, and the one I’d most like to pass on. Remember, he told us: “They work for you.”Each N.C. senator’s and representative’s office received my husband and me with gracious interest.After returning from D.C., I thanked each office we met with for listening to our story. Visiting Capitol Hill gave us an opportunity to tell our story, make a difference and feel like we were a part of something bigger than any of us can imagine.The most amazing thing was the email reply from Joshua Teitelbaum, staff director at Sen. Hagan’s office: “Thank you for following up after our meeting last week, and for coming to D.C. to share your story. I’m glad to tell you that just this week, Senator Hagan became a cosponsor of the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act. “Your visit made a difference, and helped us support the bill.”
Thursday, Jul. 25, 2013
Mooresville couple’s D.C. trip yields meetings in congressional offices
Suzanne Ruff is a freelance writer for Mooresville News and a kidney donor. Have a story idea for Suzanne? Email her at firstname.lastname@example.org.
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