Donna Jones testified in front of The House Subcommittee on Labor, Health & Human Services and Education on Tuesday, April 9, 2019. Donna, an adult from California with Spina Bidia advocated for $8 million in funding for the Center on Birth Defects and Developmental Disabilities (NCBDDD) at the Centers for Disease Control and Prevention (CDC). The program has been funded at $6 million, a number that has been constant for the past five years.
Watch Donna’s testimony and read it below.
Distinguished Committee Members thank you for the opportunity to provide you with testimony of my experiences as a person living with Spina Bifida. My name is Donna Jones and I am here to represent the Spina Bifida Association. We are requesting $8 million dollars for the National Spina Bifida Program, housed at the National Center on Birth Defects and Disabilities at the Centers for Disease Control and Prevention.
As a former Capitol Hill staffer, I understand how essential committee hearings are to the appropriations process.
When I was born on the island of Guam in 1976 the doctors told my parents, “She will never walk, never talk, and will be a vegetable the rest of her life. You already have one healthy daughter; you should focus on her and institutionalize the other one, just walk away.” This April 20th, I will be 43 years old. I love birthdays because with every passing year I defy all the negative predictions about what my life would be. I am happy to say I’m part of the first generation to survive to adulthood. The big obstacle to this is that adult care doctors do not have protocols in place to treat our myriad of issues. Most have never had a patient with Spina Bifida. The majority of the Spina Bifida population remain under the care of multiple pediatric specialists, these doctors are the only ones who have treated a large number of us. I may never transition to adult care.
Under the auspices of the Centers for Disease Control and Prevention, the National Center for Birth Defects and Developmental Disabilities and the Spina Bifida Association have developed the National Spina Bifida Patient Registry. The registry stores data on patients from 24 Spina Bifida clinics in the United States. Its primary purpose is to collect information on health issues patients are experiencing, the treatment they received, and will ultimately be studied to determine the effectiveness of the treatment. My medical information is part of the Registry. My doctors at Duke University run a stellar program for treating patients with Spina Bifida, and I hope my medical history will help develop sound medical treatments so people with Spina Bifida can live longer, healthier, lives. Even though I live in California, I travel to the Duke University Pediatric Spina Bifida clinic to receive care. I’m lucky that I can afford this luxury.
I don’t live in fear of my Spina Bifida, but, as I age, I do worry about my urologic issues. The majority of people with Spina Bifida are incontinent of bladder and bowel. I do my best to keep my bladder and kidneys healthy. I drink a lot of water, I catheterize myself regularly, and I have yearly check-ups with my urologist. I’ve had more bladder infections than I can count, and some have sent me to the hospital. Now, the medicine I take to control my bladder spasms is no longer working, and this leaves me vulnerable to bladder infections. I have multiple friends who developed a bladder infection, that spread to their shunts, and they died as a result. I’ve also had friends who died very quickly from kidney failure. Typical of my fellow Spina Bifida community members, kidney failure, is my greatest concern.
Like 80% of people with myelomeningocele (the most common and most severe type of Spina Bifida), I have a pump, called a shunt, installed in my head that drains cerebral spinal fluid off of my brain. My shunt is basically my second heart, I cannot live without it. Excess fluid on the brain, called hydrocephalus, is incredibly dangerous. It can lead to irreparable brain damage or death if not treated. Unfortunately, there is nothing that I can do to keep my shunt functioning. I am basically at its mercy, and if it does malfunction, I need brain surgery to have it replaced. The recovery from shunt revision is long and painful, I count myself lucky that I have only had 14 shunt revisions throughout my life. I have friends, younger than I, who have endured 50 shunt revisions. But, as a result of my many shunt revisions, I have developed seizures caused by scarring on the brain. I take very powerful anti-seizure medicines to keep them under control, and I’m happy to say this medicine is working very well.
I know I have painted a bleak picture of my life and that of my friends with Spina Bifida. It was not my intention to shock you. The truth is, I don’t sit at home bemoaning my health problems, and I absolutely do not allow myself to be sorry that I have Spina Bifida. I am too busy training in Los Angeles to break the woman’s US bench press record, June 28th of this year. The current record stands at 242 pounds, I intend to break the record with a 260-pound lift. My best bench press so far has been 235 pounds. I have a long way to go; however, I am determined to break this record. Just as exciting my trainer was approached by a producer, who wanted to film a documentary about my journey to break the record, as well as the Spina Bifida community. We started filming as soon as I arrived in Los Angeles. Finally, I have been using a wheelchair for the last 6 years, but I am now taking physical therapy because I am determined to walk again.
I don’t ever want anyone to pity me, I have a wonderful life. I truly believe I am not a mistake and I was born with Spina Bifida for a reason. I’m very blessed to have only three surgeries in the last six years. I am doing extremely well, I love who I am as a person with a disability, I have zero regrets. That being said, I hope to see in my lifetime a cure for Spina Bifida. As much as I love my life, do I want another child with Spina Bifida to have 32 surgeries as I’ve had or 60 surgeries like some of my friends? No, I do not want that.
My dear friend and mentor, Tom Baroch, died last November at the age of 58. I miss him more every day, but I take comfort in knowing he didn’t die of a Spina Bifida related problem. He died from a blood clot, like so many other people who don’t have Spina Bifida. Tom got to grow old with Spina Bifida. I know most adults don’t consider 58 as old. By Spina Bifida standards I am old as was Tom. My neurosurgeon jokingly tells me every time I see him, “Now try to behave, Donna, because you are old with Spina Bifida.” He is right, I am old, but I want the opportunity to grow old enough to look in the mirror and see wrinkles on my face and more gray hairs on my head than I can count. This is a dream I never allowed myself to have until I was in my 30’s. I respectfully ask you to increase funding for the National Spina Bifida Patient Registry as well as additional funding for a hydrocephalus protocol development. These funds will help those who come after me live healthier lives and help us all live long enough to see wrinkles on our faces.
Thank you again for this great honor of giving my testimony. I hope I have shed light on the value of increasing funding for the great work that currently is being done by the CDC, it has a direct effect on my life and that of my community. I want to thank the Committee and my fellow Californians, Representatives Roybal-Allard and Lee, for the opportunity to share my story. I hope you will support this year’s funding request for the National Spina Bifida program.