Lawyer turned rare liver disease advocate and Paradise Valley resident Cynthia Buness was recognized by the National Patient Advocate Foundation in May for her longtime volunteer efforts.
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Lawyer turned rare liver disease advocate and Paradise Valley resident Cynthia Buness was recognized by the National Patient Advocate Foundation in May for her longtime volunteer efforts.
The foundation spotlighted her volunteer patient advocacy work that initially began with her seeking medical information and treatment for an incurable disease her daughter was diagnosed with as a child. In 2012, her then 14-year-old daughter was diagnosed with a rare liver disease called Primary Sclerosing Cholangitis, which is an incurable, progressive liver disease.
Many patients with PSC, Buness said, will eventually die or require a liver transplant due to complications, have progressions that may include end-stage liver disease and develop bile duct cancer often associated with inflammatory bowel disease, or ulcerative colitis.
“My husband and I were told that the disease had no treatment, that our daughter would need a colectomy, and that she would progress to liver failure in 10-12 years,” Buness said.
She and her husband of 34 years, Randy, found a story in a Stanford University magazine about a Stanford pediatrician who treated such diseases with a “an existing generic antibiotic,” which was noted to resolve symptoms when taken orally.
“We started her on this therapy and she immediately responded; both her liver and colon normalized and have remained so now for 10 years as long as she takes this drug,” said Buness. “My daughter’s successful treatment of her PSC with oral Vancomycin motivated me to make this treatment available to other PSC patients.”
Although this therapy was successful in resolving PSC symptoms, and stopping disease progression, she learned that only a few doctors treated with the medication. Buness even connected with retired Mayo Clinic physician and Paradise Valley resident, Dr. Keith Lindor, who founded the Arizona State University College of Health Solutions.
Determined to learn about her daughter’s medical condition, Buness was mentored by Lindor. He encouraged her to attend some gastroenterology and hepatology medical conferences to educate herself in certain areas of medicine.
She learned about steps involved with getting any therapy accepted including researching, having proven effective results from a randomized placebo controlled clinical trial, securing funding for a trial requiring data, working with major universities/medical institutions, writing/applying for grants and more.
Buness started volunteering for the National Patient Advocate Foundation in 2013. A member of NPAF’s advisory group, she is passionate about patient advocacy and fighting on behalf of those with rare liver disease, which affects many children who she wanted to ensure access to therapies and information for improving their quality of life.
“Vulnerable patients often do not have access to information about their disease or new therapies. They want to understand their health issues and will spend the time and energy to do so if they are given information. They are eternally grateful for help and I so pleased to be able to help them. Receiving an emails and posts from those whose lives or children’s lives I helped has made my life more meaningful,” Buness said.
“Helping people navigate their health issues has been the most rewarding work I have ever done.”
Being an advocate allows her to challenge the system like she would on cross examination while a lawyer. Buness served as a commercial litigator for nine years and in-house senior counsel for Motorola for five years, managing toxic tort class actions lawsuits.
The Princeton, New Jersey, native, who moved to Arizona in 1976, has an undergraduate degree in zoology, a master’s of business administration and a law degree, all from Arizona State University.
She is on the Global Liver Institute Pediatric and Rare Liver Diseases Council and Chair of Research Working Group, and Parent Leader for Stanford University, Autoimmune Liver Disease Network for Kids.
She dedicates her time to educating patients about PSC disease and treatment options. She has developed a database of physicians willing to consider the tested and proved therapy, refers patients, speaks with patients’ physicians and even helps with insurance appeals for denied medication or procedures.
“By educating patients on their disease and therapeutic options, I empower them to better manage their own care,” Buness said.
“My work has made me a more compassionate and caring person. Not being a physician allows me to be a bit like ‘Switzerland’ in bringing researchers and institutions together to help move forward our understanding of the mechanics of this disease and opportunities to develop therapies and/or cures.”
When asked how her daughter is doing, Buness said “her disease is under control and her colon and liver remain healthy, so long as she continues her therapy,” consisting of taking her medication and monitoring her monthly bloodwork. Her daughter, Areta, 25, is a Stanford University graduate who is a microbiologist.
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