Alport syndrome patients are joining nearly 150 advocates, representing from six patient organizations, on Capitol Hill to meet with lawmakers during the 4th Annual Kidney Patient Summit. The two-day event, organized by the National Kidney Foundation and concluding today, has as its slogan “My Kidneys, My Life” to emphasize how vital are these organs.
Organ donors and kidney recipients are today’s focus, as they share their stories on the importance of kidney health, research and treatment, and organ donations. More than 100,000 Americans are currently waiting for a kidney transplant, the Foundation reports.
Groups taking part in the summit include the Alport Syndrome Foundation, as this condition is marked by progressive loss of kidney function leading to end-stage kidney disease, as well as hearing loss and, possibly, vision problems.
The Alport foundation has participated in the summit in each of its four years, informing lawmakers “about issues affecting all kidney patients, such as increasing available kidney transplants and prolonging coverage for transplant medication to name a few,” Sharon Lagas, the Alport Syndrome Foundation’s president and co-founder, said on its website.
“Alport syndrome tends to get lost in the kidney community because of other diseases that affect so many. … Alport is not as high a priority in the rare disease community because the life-saving treatments of dialysis and/or transplantation do exist, though less invasive options are still needed,” Lagas said of the challenges facing the community. But, she added, “On the positive side, the syndrome has similarities to other diseases, such as fibrosis and scarring, and because it is rare it offers special incentives for drug companies to develop therapies.”
Lagas, who has Alport — as does her mother, and two of her children and two nieces — also notes that the event takes place each year in March, both Alport Awareness Month and National Kidney Month in the U.S.
She encourages everyone affected by the disease to help raise awareness, contacting local newspapers and using social media to share stories in their immediate circules, and calling their state and federal lawmakers to voice their needs. Among her goals, she said, is preventing another generation from the kidney failure and hearing loss that marks the syndrome.
“You do not have to go to Washington, DC, to advocate. All you have to do is tell your story and make your voice heard. Tell others what it is like to live with Alport Syndrome and what we want to see for the future,” she said. “To effect change we must speak up — each in our own way.”
Among the Alport patient advocates at this year’s summit is Janine Diebel, who was working as a nurse when she was diagnosed in the 1974. She switched her career focus to kidney disease, and went on to develop a number of dialysis programs and be named director of dialysis services for a healthcare center in her home state, Michigan. Now retired, Diebel works in political advocacy for the National Renal Administrators Association.
Alport, an inherited disease that affects about 1 in 50,000 children, involves glomerulonephritis, or inflammation in kidneys’ small filters. It is caused by a defect in type IV collagen family of proteins — important to structures called basement membranes that are found in tissues of the ears, eyes, and kidneys.