Families with rare disease fight for coordinator laid off at Marshfield Clinic
MARSHFIELD, Wis. (WSAW) - Patients are beginning to speak up following the second round of layoffs at Marshfield Clinic in 2023. Of the 222 positions listed on the WARN notice, one had a very specific title that stands out and hits a community of people with a rare disease.
While many of the positions are difficult to determine the individual people behind the title like “nurse practitioner,” this position was “Coordinator - Treatment Center for Bardet-Biedl Syndrome.”
“I saw the list of layoffs, and that position was... being cut, it was like a dagger, dagger to my heart,” Melanie Ryterski said. She is one of the few in the country that has a family member with Bardet Biedl Syndrome; in her case, her daughter Grace “Ray” Ryterski.
Ryterski said the coordinator for the BBS program has made so many tough elements of this disease into something she does not have to worry about. The coordinator, Sonia Suda who 7 Investigates tried to reach but did not hear back from, puts together a week-long clinic every year to allow patients to see all of their many doctors in a matter of days, among other duties.
This means the world to patients like Ryterski who do not live near Marshfield. Her family is 500 miles away in Columbia, Ill. Others live even further away, as far as Puerto Rico, and Marshfield Clinic’s center is the only dedicated place for BBS treatment in North America.
“I’m quite sure that the Center of Excellence will disintegrate without having Sonia involved because she holds all together,” Dr. Bob Haws, the founder and former director of the BBS Center of Excellence told 7 Investigates.
Marshfield Clinic declined and interview, but responded to some email questions and provided a statement. The senior media relation specialist, Jeff Starck said a registered nurse that has been coordinating the special needs clinic for the past several years and provides support at the child development center will take the BBS 40 patients on her coordination caseload. He did not say how many patients were on her current load. This RN has worked with past BBS clinic weeks as an escort and liaison.
I understand that concern and the emotional response. But, this doesn’t change Marshfield Clinic Health System’s commitment to the Bardet-Biedel Syndrome Center of Excellence and the BBS clinics we offer. There will be no disruption in the communications or coordination with the families. In fact, it aligns caregiving coordination across all of our programs for children and adults with special needs. This would include approximately 40 patients we see in clinic yearly with the BBS program. We have amazing staff, led by three providers who are BBS specialists, as well as coordinators with extensive experience and who work with hundreds of children and adults annually with special needs. That care will expand to the BBS center as we continue to build on the program.
1 in 250,000
According to the Bardet Biedl Syndrome Foundation, the disease impacts one in 250,000 people around the world. Some areas of the world have higher instances than others. In North America, about 3,000 people have been diagnosed with the disease. BBS is a genetic condition that can lead to issues like blindness, intellectual impairments, obesity, and chronic kidney disease. Due to its rarity, patients do not always receive good information and there are limited resources.
“We’ve fought very, very hard for our kids to get the right kind of treatment and usually the parents are the ones educating the doctors in our local areas because nobody’s heard of it,” Ryterski said.
That began to change after one pediatric nephrologist working in Texas encountered his first patient with BBS. That doctor was Haws. He got involved in the BBS community and saw a gap.
“I became aware of the need for a specialized program led by physicians and nurses and staff that really understood the condition.”
By the early 2000s, Dr. Haws sought out work at Marshfield Clinic for its small-town community and renowned reputation for excellence in care. He joined the system in 2004. Then, with some research and preparation completed, he pitched the idea of filling that BBS gap.
“At first there was apprehension because it’s something completely new to the clinic, but I received the support of the leadership. They were fantastic.”
By 2013, they opened the Bardet Biedl Syndrome Center of Excellence inside the main Marshfield Clinic campus. The center pulled together all of the specialties the patients need to see and educated all of those involved on this rare disease.
“When Bradley was born, he tripled his weight in three months. He was born with a six toe very unusual. Things kept occurring, cognitively that did not fit,” said Merry Evans, speaking on behalf of her son, Bradley. In the late 1980′s, Merry took Bradley to a genetic counseling center in Madison where he was manually diagnosed with BBS. “Fast forward to 2013, I’ve spent at least 10 years on the internet researching, educating teachers, educating people, family and friends. I found Dr. Bob Haws.”
“Our families are so used to fighting and advocating for our children, and like, that’s the one place where we can just,” Veronica Arvidson, a mother of a daughter with BBS took a deep breath, “you know, we have people fighting for us there.”
The center brought on a coordinator for the program in 2015, Sonia Suda. Patients and their families say she is like family, an “angel” as Mayra Carrión and her daughter Ámbar Fernández Carrión from Puerto Rico call her. When they need help with appointments, coordination with insurance, questions about symptoms, or really anything, they call or email Suda.
She puts together the week-long clinic for patients, setting up hotels for them, ensuring they have everything they need, down to a sandwich if appointments run into lunchtime. She also coordinates recreational meet-ups so these one-in-250,000 can feel comfort, in getting to know someone else like them.
“Physicians would never be able to do it,” Dr. Haws admitted. “I’ll speak for myself, it’s just beyond what we could do because we don’t have the time to do that.” He said the same for the other medical providers like nurses and medical assistants.
She also contacts patients and their families when clinical trials are available through the research center. That work helped recruit patients like Zack Paff and many others for a drug trial to address patients’ hunger, a drug that received FDA approval this summer.
“We’ve developed a therapy that’s important for a very important component of the disease, which is severe hunger and obesity,” Dr. Haws said. “And now there’s an effective therapy because of what Marshfield Clinic offered.”
“He’s lost a ton of weight. He’s doing great, you know, now he’s waiting for a clinical trial for vision for gene therapy, because he’s legally blind,” Zack’s mom, Renee Paff exclaimed.
“I cannot express enough how irreplaceable Sonia is,” Arvidson said, tearing up.
These families say the BBS diagnosis is isolating and scary, especially for families who received diagnoses before the internet was in people’s pockets and finding resources was particularly challenging. Suda -- which Dr. Haws said was the only full-time member of the BBS team, as others saw patients without BBS too -- was patients’ lifeline.
“I could relax you know and, and breathe because I didn’t have to constantly worry about the unknown with him,” Merry Evans expressed.
Now, she and others in the BBS community are uncertain. Bradley Evans said with a smile, “We’re high-maintenance.”
Ryterski said Ray will soon be attending UW-Stevens Point for college, in part so she can be closer to the BBS center’s services. She is blind, so the Ryterskis were counting on having Suda to help coordinate transportation to ensure she can get to any appointments when living on her own.
“I wouldn’t be able to do that from 500 miles away from the clinic,” Ryterski expressed.
“I am appalled in Marshfield Clinic,” Merry Evans stated, “that they would take somebody so valuable and dismiss her like her job isn’t necessary.”
“Very lightly,” Bradley Evans added.
Merry Evans continued saying as the BBS center supported the families, the families supported the center too through fundraisers to help the clinic with whatever it needed.
“I know they have to cut there’s, this is a budget issue, but they cut the wrong person.”
“Sadly, the people who in the leadership that made the clinic possible years ago, 2013, have all left the clinic,” Dr. Haws said. “There’s not a single one that continues to lead the clinic. And so with that, it’s these decisions will be made by individuals who are more interested in business practice than in quality care.”
He forecasted that the center will not be around within the next 12 months, despite his efforts to set the center up for longevity after his retirement last year.
Echoing the concerns of the other BBS families, Merry Evans concluded “We don’t have anywhere else to go.”
Marshfield Clinic wanted to assure patients there will be no disruption in future communications, scheduling, and consultation as Suda transitions out of her role by May 19, and that the center is not closing.
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