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Spectrum Health Helen DeVos Children’s Hospital
in Grand Rapids, Michigan has more than 350 pediatric specialists and subspecialists, 10 years of U.S. News & World Report national rankings, and innovations that attract pediatric patients from around the world. As the only children’s hospital within the Spectrum Health system, it has a Level I pediatric trauma center and regional pediatric intensive-care unit and neonatal intensive care unit.
While they were looking to see what innovations were on the horizon in pediatric medicine, administrators at Spectrum Health Helen DeVos Children’s Hospital learned of Rady Children’s Institute for Genomic Medicine’s (RCIGM) advancements in rapid whole genome sequencing (rWGS®). Intrigued and wanting to learn more, they brought in RCIGM founder and CEO, Dr. Stephen Kingsmore, for Grand Rounds, and then asked Caleb Bupp, MD, FACMG to lead their efforts to bring this technology to the hospital.
“This was an exciting opportunity that most physicians have to beg for, and as a geneticist, it was the cutting-edge technology you dream of,” said Dr. Bupp, Genetics Division Chief to the hospital.
The children’s hospital needed a solution that would allow its healthcare providers, who were sometimes unfamiliar with genetic testing, to quickly diagnose critically ill infants and children whose condition remained a mystery, despite running multiple tests. In order to diagnose and inform treatment decisions using rWGS®, the hospital partnered with RCIGM and reported its first case in July, 2018.
Kids are sick without explanations and we’re doing our very best to take care of them, but we don’t have a good ‘why.’ Rapid WGS is the tool we’ve never had on our belt before, but now that we do, we need to use it aggressively and early to determine ‘why’ a child is sick.”
— Caleb Bupp, MD, FACMG, Genetics Division Chief at Spectrum Health Helen DeVos Children’s Hospital.
“Partnering with RCIGM has given our genetics team an incredibly powerful tool to advocate for the growth of genetic testing and precision medicine in our health system,” said Dr. Bupp. “Because of their fast turn-around-time, we get the results quickly and this can be life-changing for families. We can also dialogue with their geneticists about the results in real time over the phone, ask questions and learn from their expertise.”
“Our physicians learn something from every single rWGS case we do and from a culture standpoint, I think it’s really been a game changer for our hospital,” added Dr. Bupp. “When you have heart surgeons thinking, maybe we should do genome sequencing, that’s a pretty big win.”
This partnership has proven to be a tremendous leap forward in genetic disease detection for the hospital and has helped to position it as a leader among Michigan hospitals. As it was one of the earliest adopters of rWGS® in the state, Spectrum Health Helen DeVos Children’s Hospital now provides telehealth to other, smaller children’s hospitals in Michigan to help them with return of results from rWGS. It continued to work with RCIGM on state projects, like Project Baby Deer, and payor engagement that resulted in the groundbreaking Michigan Medicaid rWGS coverage policy.
Dr. Bupp helped spearhead Michigan’s Project Baby Deer (PBD) initiative – a collaboration between RCIGM and the Michigan Health & Hospital Association (MHA) Keystone Center – to bring rWGS to hospitals across the state. Since the hospital had been offering rWGS for several years, it served as one of the pilot sites for Project Baby Deer.
“Ever since we were up and running with rWGS at the hospital, we’ve had people from other institutions ask us about how they can do this and how can we work together,” said Dr. Bupp. “It has been a journey here in Michigan and I think we are fast setting up a paradigm where we’re either going to take care of kids and know why they’re sick, or we’re going to take care of kids and not know why they’re sick. The solution is fairly straightforward.”
All medical centers across the state, not just those involved in Project Baby Deer, now have rWGS as a tool on their belt and can learn why a child is sick to determine the best course of treatment.”
— Caleb Bupp, MD, FACMG, Genetics Division Chief at Spectrum Health Helen DeVos Children’s Hospital.
In September 2021, Michigan became the first state to establish Medicaid coverage of rWGS for critically ill infants who meet certain criteria through a carve-out reimbursement separate from the Diagnosis Related Group (DRG) payment.
“Ever since the legislation passed, I’ve been particularly touched by the number of calls that I am getting from other physicians, working in states like Oregon and Washington, wanting to know the connections and conversations we had, as well as the evidence that was most impactful, to make this a reality,” said Dr. Bupp. “It has really started to snowball!”
Now Dr. Bupp and others are moving on to the next phase of Project Baby Deer. They recently completed an implementation study to determine how much healthcare providers understood about genomics and rWGS, if they felt the testing was useful, and whether it changed their care management. Views about rWGS were generally positive and greatly influenced by a provider’s knowledge about the testing. Based on survey results from the study, published in the March 2022 issue of Children, the PBD team plans to focus on providing state-wide targeted education to providers and track to see if their level of understanding and utilization has increased. Additionally, Dr. Bupp is collaborating with medical centers throughout Michigan to learn how they are handling the reimbursement process for rWGS, because this has never been done before, and develop a standardized workflow to optimize the process.
“When you think about health equity, it shouldn’t matter where a kid is born as to whether they can get lifesaving testing like rWGS – it should be available for kids everywhere,” said Dr. Bupp.
Franck LS, Scheurer-Monaghan A, Bupp CP, Fakhoury JD, Hoffmann TJ, Deshpandey M, Arenchild M, Dimmock DP.
Children. 2022; 9(3):357.
doi.org/10.3390/children9030357
Caleb Bupp spoke at Frontiers 2020 about Project Baby Deer. (RCIGM Learning Network login required.)
© 2024 Rady Children's Institute for Genomic Medicine.
