Kidney Awareness Advocates Push for Research and Treatment Act

NORTH CAPE MAY – Pete DiGennaro wanted to put a face on kidney disease when he participated in last week’s Kidney Action Day on Capitol Hill, advocating for the passage of The Chronic Kidney Disease Improvement in Research and Treatment Act. As one of a dozen patient advocates from across the nation who met with local representatives, he not only gave it a face, but shared information about the 31 million people estimated to have chronic kidney disease.
“There was so much to take in,” DiGennaro said about the events, which ranged from advocacy training the day before, to a full 12-hour day meeting with the sponsors of the bill, local representatives and staffs. “I wanted to really focus on the bill so it gets passed, but it was also great to learn everyone’s stories and why they are involved with this bill.”
The bill, (H.R. 1130, S.598) has been introduced into the House by Rep. Tom Marino (R-Pa.) and Rep. John Lewis (D-Ga.) and in the Senate by Senator Mike Crapo (R-Id.) and Senator Ben Cardin (D-Md.). It seeks to address improvements in the research, treatment and care of chronic kidney disease.
“One of the aspects the bill promotes is allowing individuals with kidney failure who have commercial health insurance through an employer to retain that insurance as primary coverage for 42 months,” DiGennaro said. “Current law requires patients with kidney failure to switch to Medicare for primary coverage after only 30 months. In many cases, commercial insurance provides more coverage and benefits than Medicare. This bill would promote patient access and choice by giving them the option to retain commercial coverage for an additional 12 months.”
Patient advocates believe that termination of Medicare eligibility, for those under age 65, following a kidney transplant – which also ends coverage for necessary immunosuppressive drugs – discourages many patients from pursuing this preferred treatment option. The bill would require the Secretary of Health and Human Services to conduct a study identifying and quantifying any disincentives in the Medicare’s structure that creates barriers to kidney transplants.
“After I had my transplant, I was basically told that there wasn’t any help for the medicines I needed to help my immune system accept the new kidney after 30 months,” DiGennaro said. “I would have been better off, they told me, if I was on dialysis. Patients should be able to get help if they need it.”
DiGennaro was diagnosed with a streptococcal infection at age 12 that eventually led to kidney disease. He had hoped to join the Navy, but began dialysis just before his 21st birthday. After almost nine years on dialysis, and after having a kidney transplant that lasted 13 years, he is back on dialysis, receiving treatments three times a week. He’s also waiting for another kidney transplant.
“The only cure for kidney failure is dialysis or transplant,” he explained. “People who have had a transplant are still considered to have kidney failure. However, when some one has kidney failure, there are no visible signs. I wanted to put a face to kidney disease and raise awareness within Congress to get this bill passed, and I think I absolutely did just that.”
According to Tamara Ruggiero, vice president of public affairs, American Kidney Fund, DiGennaro did an “amazing job telling his story to lawmakers. By sharing all that he has been through, he made the compelling point that this legislation is critically important to people who are affected by kidney disease.
“We were thrilled that Pete was able to join us for Kidney Action Day and he should feel proud of the way he helped to increase lawmakers understanding and awareness of kidney disease,” she added.
DiGennaro met with the health legislative assistant in the office of Senator Cory Booker (D-N.J.) and with Congressman Frank LoBiondo (R-N.J.). He also met with two of the senators sponsoring the bill. “It was interesting to hear why these people were sponsoring the bill,” DiGennaro said. “There is often an emotional attachment because someone has diabetes which eventually affects the kidneys, or they know some one who died from kidney disease.
“Because there are no symptoms in early stages, nine out of 10 people with chronic kidney disease don’t know they have it,” DiGennaro said. “Left untreated and undiagnosed, it can lead to heart attack, stroke, kidney failure or death.”
A meeting with a representative from the office of Senator Robert Menendez (D-N.J.) was “a bit disappointing, so we need to do some follow up with him,” DiGennaro said.
Part of DiGennero’s efforts to raise awareness includes encouraging people to join the American Kidney Fund’s 31 for 31 Campaign. See the web site at http://goo.gl/1NWPPo (case sensitive).
“There are 31 million Americans living with kidney disease,” DiGennaro said. “In March, we celebrate 31 days of National Kidney Month. We hope people will donate $31 to help patients in need and to programs that help prevent kidney disease, and get their family and friends to donate.”
Now that DiGennaro has been certified as an American Kidney Fund Health Educator, he also can perform screenings at health fairs. “Many people with kidney failure live with several other illnesses, such as diabetes or hypertension, which impacts their care and health outcomes. Oftentimes, just tracking your blood pressure for a period of time can lead to diagnosis of kidney failure,” he said.
“A lot of times, you don’t have a full health work up until something is already wrong with you,” he added. “If people could have their kidneys checked while they are doing a yearly physical exam, they might catch something earlier and address it.”
DiGennaro said it’s easy for him to talk about kidney disease because he is so passionate about it. “If anyone wants me to come and talk to their group, or have a fundraising event, I’d love to help them,” he said.
To contact Karen Knight, email kknight@cmcherald.com.
For previous coverage, go to:
– Area Kidney Awareness Advocate Heads to D.C.: http://goo.gl/MKErJN.