Tony and Kelly Mantoan, with their boys Teddy and Fulton, who both suffer from SMA, a genetic disorder that makes walking, swallowing, and breathing progressively difficult.
Kelly Mantoan was nursing her newborn son, Teddy, in the NICU in a Philadelphia hospital when her doctor came in and silently laid a hand on her shoulder. Immediately, Kelly knew what the gesture meant and started to sob: Teddy, like his one-year-old brother, Fulton, had just tested positive for a neuromuscular condition called spinal muscular atrophy (SMA).
The boys were 8 and 10 when Kelly heard about an experimental new treatment, still being tested in clinical trials, called Spinraza.
"We knew that [SMA] was a genetic disorder, and we knew that we had a 1 in 4 chance of Teddy having SMA," Mantoan recalls. But the idea of having two children with the same severe disability seemed too unfair for Kelly and her husband, Tony, to imagine. "We had lots of well-meaning friends tell us, well, God won't do this to you twice," she says. Except that He, or a cruel trick of nature, had.
In part, the boys' diagnoses were so devastating because there was little that could be done at the time, back in 2009 and 2010, when the boys were diagnosed. Affecting an estimated 1 in 11,000 babies, SMA is a degenerative disease in which the body is deficient in survival motor neuron (SMN) protein, thanks to a genetic mutation or absence of the body's SNM1 gene. So muscles that control voluntary movement – such as walking, breathing, and swallowing – weaken and eventually cease to function altogether.
Babies diagnosed with SMA Type 1 rarely live past toddlerhood, while people diagnosed with SMA Types 2, 3, and 4 can live into adulthood, usually with assistance like ventilators and feeding tubes. Shortly after birth, both Teddy Mantoan and his brother, Fulton, were diagnosed with SMA Type 2.
The boys were 8 and 10 when Kelly heard about an experimental new treatment, still being tested in clinical trials, called Spinraza. Up until then, physical therapy was the only sanctioned treatment for SMA, and Kelly enrolled both her boys in weekly sessions to preserve some of their muscle strength as the disease marched forward. But Spinraza – a grueling regimen of lumbar punctures and injections designed to stimulate a backup survival motor neuron gene to produce more SMN protein – offered new hope.
In clinical trials, after just a few doses of Spinraza, babies with SMA Type 1 began meeting normal developmental milestones – holding up their heads, rolling over, and sitting up. In other trials, Spinraza treatment delayed the need for permanent ventilation, while patients on the placebo arm continued to lose function, and several died. Spinraza was such a success, and so well tolerated among patients, that clinical trials ended early and the drug was fast-tracked for FDA approval in 2016. In January 2017, when Kelly got the call that Fulton and Teddy had been approved by the hospital to start Spinraza infusions, Kelly dropped to her knees in the middle of the kitchen and screamed.
Spinraza, manufactured by Biogen, has been hailed as revolutionary, but it's also not without drawbacks: Priced per injection, just one dose of Spinraza costs $125,000, making it one of the most expensive drugs on the global market. What's worse, treatment requires a "loading dose" of four injections over a four-week period, and then periodic injections every four months, indefinitely. For the first year of treatment, Spinraza treatment costs $750,000 – and then $375,000 for every year thereafter.
Last week, a competitive treatment for SMA Type 1 manufactured by Novartis burst onto the market. The new treatment, called Zolgensma, is a one-time gene therapy intended to be given to infants and is currently priced at $2.125 million, or $425,000 annually for five years, making it the most expensive drug in the world. Like Spinraza, Zolgensma is currently raising challenging questions about how insurers and government payers like Medicaid will be able to afford these treatments without bankrupting an already-strained health care system.
To Biogen's credit, the company provides financial aid for Spinraza patients with private insurance who pay co-pays for treatment, as well as for those who have been denied by Medicaid and Medicare. But getting insurance companies to agree to pay for Spinraza can often be an ordeal in itself. Although Fulton and Teddy Mantoan were approved for treatment over two years ago, a lengthy insurance battle delayed treatment for another eight months – time that, for some SMA patients, can mean a significant loss of muscular function.
Kelly didn't notice anything in either boy – positive or negative – for the first few months of Spinraza injections. But one day in November 2017, as Teddy was lowered off his school bus in his wheelchair, he turned to say goodbye to his friends and "dab," – a dance move where one's arms are extended briefly across the chest and in the air. Normally, Teddy would dab by throwing his arms up in the air with momentum, striking a pose quickly before they fell down limp at his sides. But that day, Teddy held his arms rigid in the air. His classmates, along with Kelly, were stunned. "Teddy, look at your arms!" Kelly remembers shrieking. "You're holding them up – you're dabbing!"
Teddy and Fulton Mantoan, who both suffer from spinal muscular atrophy, have seen life-changing results from Spinraza.
(Courtesy of Kelly Mantoan)
Not long after Teddy's dab, the Mantoans started seeing changes in Fulton as well. "With Fulton, we realized suddenly that he was no longer choking on his food during meals," Kelly said. "Almost every meal we'd have to stop and have him take a sip of water and make him slow down and take small bites so he wouldn't choke. But then we realized we hadn't had to do that in a long time. The nurses at school were like, 'it's not an issue anymore.'"
For the Mantoans, this was an enormous relief: Less choking meant less chance of aspiration pneumonia, a leading cause of death for people with SMA Types 1 and 2.
While Spinraza has been life-changing for the Mantoans, it remains painfully out of reach for many others. Thanks to Spinraza's enormous price tag, the threshold for who gets to use it is incredibly high: Adult and pediatric patients, particularly those with state-sponsored insurance, have reported multiple insurance denials, lengthy appeals processes, and endless bureaucracy from insurance and hospitals alike that stand in the way of treatment.
Kate Saldana, a 21-year-old woman with Type 2 SMA, is one of the many adult patients who have been lobbying for the drug. Saldana, who uses a ventilator 20 hours each day, says that Medicaid denied her Spinraza treatments because they mistakenly believed that she used a ventilator full-time. Saldana is currently in the process of appealing their decision, but knows she is fighting an uphill battle.
Kate Saldana, who suffers from Type 2 SMA, has been fighting unsuccessfully for Medicaid to cover Spinraza.
(Courtesy of Saldana)
"Originally, the treatments were studied and created for infants and children," Saldana said in an e-mail. "There is a plethora of data to support the effectiveness of Spinraza in those groups, but in adults it has not been studied as much. That makes it more difficult for insurance to approve it, because they are not sure if it will be as beneficial."
Saldana has been pursuing treatment unsuccessfully since last August – but others, like Kimberly Hill, a 32-year-old with SMA Type 2, have been waiting even longer. Hill, who lives in Oklahoma, has been fighting for treatment since Spinraza went on the U.S. market in December 2016. Because her mobility is limited to the use of her left thumb, Hill is eager to try anything that will enable her to keep working and finish a Master's degree in Fire and Emergency Management.
"Obviously, my family and I were elated with the approval of Spinraza," Hill said in an e-mail. "We thought I would finally have the chance to get a little stronger and healthier." But with Medicare and Medicaid, coverage and eligibility varies wildly by state. Earlier this year, Medicaid approved Spinraza for adult patients only if a clawback clause was attached to the approval, meaning that under certain conditions the Medicaid funds would need to be paid back. Because of the clawback clause, hospitals have been reluctant to take on Spinraza treatments, effectively barring adult Medicaid patients from accessing the drug altogether.
Hill's hospital is currently in negotiations with Medicaid to move forward with Spinraza treatment, but in the meantime, Hill is in limbo. "We keep being told there is nothing we can do, and we are devastated," Hill said.
"I felt extremely sad and honestly a bit forgotten, like adults [with SMA] don't matter."
Between Spinraza and its new competitor, Zolgensma, some are speculating that insurers will start to favor Zolgensma coverage instead, since the treatment is shorter and ultimately cheaper than Spinraza in the long term. But for some adults with SMA who can't access Spinraza and who don't qualify for Zolgensma treatment, the issue of what insurers will cover is moot.
"I was so excited when I heard that Zolgensma was approved by the FDA," said Annie Wilson, an adult SMA patient from Alameda, Calif. who has been fighting for Spinraza since 2017. "When I became aware that it was only being offered to children, I felt extremely sad and honestly a bit forgotten, like adults [with SMA] don't matter."
According to information from a Biogen representative, more than 7500 people worldwide have been treated with Spinraza to date, one third of whom are adults.
While Spinraza has been revolutionary for thousands of patients, it's unclear how many more lives state agencies and insurance companies will allow it to save.
In this episode of Making Sense of Science, my guest is Raina Plowright, a leading researcher when it comes to how and why viruses sometimes jump from bats to humans.
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Raina Plowright, a disease ecologist at Cornell University, is taking blood and urine samples from hundreds of animals and using GPS tags to follow their movement.
Kelly Gorham
Companies such as Wave and Magment offer a variety of approaches for charging vehicles without plugs while they're being stored or even used, but costs stand in the way of broader adoption.
Patented by Esguerra, the “magnetizing concrete” is able to target the charge quite precisely. The batteries will be mounted in a box underneath the vehicles such as the retrofitted public buses. “Look, here’s one passing by,” says Esguerra, pointing out the window as a blue city bus rides past his office.
An invention finds its purpose
Esguerra grew up in Bogotá, studied physics at the Technical University Munich where he fell in love with a German woman, and started a family in her home country. For 15 years, he developed magnetic products, including the magnetizing cement, for Siemens, Europe’s largest industrial manufacturing company. The patent belonged to Siemens, of course. “But there were hardly any electric vehicles yet,” Esguerra says, “and Siemens didn’t quite know what to do with this invention.”
Esguerra changed companies a few times but, in 2015, he got an offer from Siemens. The patent for the magnetizing cement was expiring and Siemens wasn’t interested in keeping it. Would he, as the inventor, want it back? “I did not hesitate a second,” Esguerra remembers with a smile. “I’m a magnetician at heart.” That same year, he founded Magment to finally make use of the technology he created 20 years ago.
To demonstrate how his cement is made, he opens the lid of a plastic bucket filled with cement powder. Mixed in are fingernail-sized black pieces, so-called ferrites, mainly consisting of three ceramic oxides: iron, nickel and zinc. Conventionally, they are used in electronics such as cell phones, computers and cables. Molded in concrete, ferrites create a magnetic field that can transport charge to a vehicle, potentially eliminating range anxiety for EV drivers.
Molded in concrete, ferrites create a magnetic field that can transport charge to a vehicle, potentially eliminating range anxiety for EV drivers.
Magment
“Ferrites have extremely high rejection rates,” Esguerra adds. “It’s comparable to other ceramics: As soon as there is a small tear or crack, the material is rejected. We are talking about a rejection pile of 500,000 tons per year worldwide. There are mountains of unused materials.”
Exactly this fact was the starting point of his research at Siemens: “What can we do with this energy-intensive material? Back then, it was crushed up and mixed into the cement for building streets, without adding any function.” Today, too, the Magment material can simply be mixed with the conventional material and equipment of the cement industry. “We take advantage of the fact that we don’t have to build factories and don’t have high transportation costs."
In addition to saving resources, recycled ferrite also makes concrete more durable.
No plugs, no charging breaks
A young intern in the office next door winds cables around a new coil. These coils will later be lowered underground in a box, connected to the grid and encased in magnetizing concrete. The recipient box looks similar; it’s another coil but smaller, and it will be mounted underneath the carriage of the vehicle. For a car, the battery box would be 25 by 25 centimeters (about 10 inches), for a scooter five by five centimeters (about two inches).
Esguerra pushes an electric scooter into a cemented scooter rack next to his office. The charging pad is invisible. A faint beep is the only sign that it has started charging. “Childs play!” Esguerra says. “Even when someone puts in the scooter a little crooked, the charge still works. Our efficiency rate is up to 96 percent.” From this summer on, hotel chains in Munich will try out this system with their rental scooters, at a price of about 500 Euros per charging station.
Compared to plug-in charging, Magment’s benefits include smaller batteries that charge slower and, therefore, gentler, so they may last longer. Nobody needs to plug in the vehicles manually anymore. “Personally, I’ve had an EV for six years,” Esguerra says, “and how often does it happen that I forgot to plug it in overnight and then start out with a low charge in the morning? Once people get used to the invisible charging system, it will become the norm.“
There are also downsides: Most car companies aren’t ready for the new technology. Hyundai is the first carmaker that announced plans to equip some new models with inductive charging capability. “How many cars are electrified worldwide?” Esguerra asks and gives the answer himself: “One percent. And how many forklifts are electrified? More than 70 percent!” Therefore, Magment focuses on charging forklifts, e-scooters and buses.
Magment has focused most of its efforts on charging forklifts and other vehicle types that are entirely or predominantly electric, unlike cars.
Magment
On the morning of my visit to Esguerra’s office, a developer of the world’s third-biggest forklift manufacturer is there to inspect how the technology works on the ground. In the basement, a Magment engineer drives an electric forklift over a testbed with invisible charging coils, turning on the green charging light. Esguerra opens the interior of the forklift and points out the two batteries. “With our system, the forklift will only need one battery.” The savings, about 7,000 Euro per forklift, will pay for the installation of Magment’s charging system in warehouses, Esguerra calculates. “Less personnel and no unnecessary wait times for charging will lead to further savings,” he says.
To implement the new technology as efficiently as possible, Magment engineers began recording the transport routes of forklifts in warehouses. “It looks like spaghetti diagrams,” Esguerra explains. “Soon you get the areas where the forklifts pass or wait most frequently. This is where you install the chargers underground.” The forklifts will charge while in use, without having to pause for charging breaks. The method could also work for robots, for instance, in warehouses and distribution centers.
Roads of the future could be electric
Potential disadvantages might become apparent once the technology is more broadly in use. Therefore investors were initially reluctant, Esguerra admits. “Some are eager to be the first but most prefer to wait until the technology has been extensively used in real life.”
A clear hurdle today is that electrifying entire freeways with induction coils would cost at least 1 to 1.5 million Euros per kilometer. The German Department for Transportation even calculates overall costs of 14 to 47 million Euros per kilometer. So, the technology may only make sense for areas where vehicles pass or dwell the longest, like the Oberhaching train station or a busy interstate toll booth.
And yet, Magment is ramping up to compete with other companies that build larger inductive charging pads. The company just finished the first 20 meters of a testbed in Indiana, in partnership with the Purdue University and the Indiana Department of Transportation. Magment is poised to build “the world’s first contactless wireless-charging concrete pavement highway segment,” Purdue University announced.
The project, part of Purdue’s ASPIRE (Advancing Sustainability through Powered Infrastructure for Roadway Electrification) program, is financed by the National Science Foundation. “Indiana is known as the Crossroads of America, and we’re committed to fortifying our position as a transportation leader by innovating to support the emerging vehicle technology,” Governor Eric J. Holcomb said. If testing is successful, including the concrete’s capacity to charge heavy trucks operating at higher power (200 kilowatts and above), Indiana plans to identify a highway segment to install Magment’s charging pads. The earliest would be 2023 at best.
In the meantime, buses in the Californian Antelope Valley, trams at Hollywood's Universal Studios and transit buses in Tampa, Florida, are already charging with inductive technology developed by Wave, a company spun out of Utah State University. In Michigan, Governor Gretchen Whitmer announced plans to build a test route for vehicles to charge while driving, in collaboration with the Israel-based company Electreon, and this year contracted to build the first road-based charging system in the U.S. The state is providing support through an innovative grant program.
Costs remain one of the biggest obstacles, but Esguerra’s vision includes the potential that toll roads could charge a premium for inductive charging capabilities. “And in reverse, a driver who has too much energy could feed his surplus into the grid while driving,” Esguerra dreams.
Meanwhile, Wave’s upcoming big projects are moving trucks along a route in Southern California and running a UPS route between Seattle and Portland. Wave CTO Michael Masquelier describes the inductive power transfer his company champions as “similar to a tuning fork. By vibrating that fork, you sent energy through the air and it is received by another tuning fork across the room. So it’s similar to that, but it’s magnetic energy versus sound energy.”
He hopes to partner with Magment, saying that “the magnetizing cement makes installation easier and improves the energy efficiency.” More research is needed to evaluate which company’s technology will prove to be the most efficient, practical, and cost-effective.
Esguerra’s vision includes the potential that toll roads could charge a premium for inductive charging capabilities. “And in reverse, a driver who has too much energy could feed his surplus into the grid while driving,” Esguerra dreams.
The future will soon arrive in the idyllic town of Bad Staffelstein, a quaint tourist destination in the Upper Franconia region of Germany. Visitors will be taken to and from the main station and the popular thermal bath by driverless shuttles. Together with the University of Wuppertal, the regional government of Upper Franconia wants to turn its district into “the center of autonomous driving.” Magment is about to install inductive charging pads at the shuttle stations and the thermal bath, eliminating the need for the shuttles to stop for charging times. No more drivers, no cable, no range anxiety. Masquelier believes that “wireless and autonomous driving go hand in hand.” Science fiction? It will become science reality in spring 2023.
CORRECTION: An earlier version of the story erroneously mentioned that Electreon required overhead cables.