A Race to Rethink Care After a Dire Diagnosis

      In August 2017, Brian Wallach’s notion of time changed forever. Mr. Wallach, then 36 and a federal prosecutor in the middle of a firearms …

      A Race to Rethink Care After a Dire Diagnosis

      In August 2017, Brian Wallach’s notion of time changed forever.

      Mr. Wallach, then 36 and a federal prosecutor in the middle of a firearms trafficking case in Chicago, had spent months trying to ignore persistent muscle spasms and a worsening cough.

      When he finally visited a neurologist — just a few days after the birth of his second child — the news was grim: The doctor believed he had amyotrophic lateral sclerosis, or Lou Gehrig’s disease. In a few years, he would most likely be robbed of the ability to walk, speak, eat and ultimately breathe.

      Even so, Mr. Wallach was fortunate: His diagnosis, which took a few months and trips to neurologists all over the country to confirm, came comparatively early. He had time — and a chance to get into clinical trials that have added to doctors’ understanding of the lethal disease.

      Today, Mr. Wallach and his wife, Sandra Abrevaya, lead a company that aims to help other A.L.S. patients make the most of their time — and, ideally, give them more of it.

      Their company, Synapticure, believes telemedicine and data aggregation will help A.L.S. patients and researchers deal with challenges caused by the disease’s rapid progression. Between 20,000 and 30,000 people in the United States have A.L.S., according to Centers for Disease Control and Prevention estimates, and most are expected to live for just two to five years after diagnosis.

      While there are multidisciplinary A.L.S. treatment centers in almost every state, patients may have to drive for hours to reach them while travel grows increasingly difficult. And doctors at many clinics say they can serve at most 300 patients a year because of their extensive needs.

      At the same time, clinical trials that could help slow the disease’s progress are generally open to patients only within 18 months of the onset of symptoms — a brief window if early signs were ignored or missed.

      Navigating it all can get a little harder each day. Mr. Wallach, who ran on Yale University’s track and field team, uses a wheelchair. He cracks jokes and rattles off reams of information about research, genetic sequencing and the business rationale for pharmaceutical companies to work on A.L.S., but he also struggles to pronounce words and often relies on Ms. Abrevaya to repeat them so others can understand.

      “We’re stuck in a burning house with the doors locked,” Ms. Abrevaya said. “It’s your responsibility to track all of this and make sure you’re organized and know about everything.”

      Chicago-based Synapticure closed a $6 million round of seed funding last fall from GV, formerly known as Google Ventures, and a host of well-known tech investors and founders. They included Ben Silbermann, the chief executive of Pinterest, and Ron Conway, who was among the earliest backers of Facebook, Airbnb and Twitter.

      Mr. Wallach, who left his job as an assistant U.S. attorney in 2018, and Ms. Abrevaya, who left her job as president of Thrive Chicago, an education nonprofit, in 2020, want to use the new funding to attract more patients and specialists as well as to build out Synapticure’s technology platform.

      Mr. Wallach said he and his wife were able to read reams of research papers and consult a number of doctors to sniff out the best treatments and studies, but others are not so fortunate.

      “If we succeed, it will be because every patient will have the opportunities I’ve had,” he said. “That would be an amazing success both from a human standpoint and from a business standpoint.”

      The couple at home in Kenilworth, Ill. Their goal is to give other A.L.S. patients the opportunities that Mr. Wallach has had.Credit…Taylor Glascock for The New York Times

      Synapticure’s timing is auspicious: Mr. Wallach said that more than 100 A.L.S. clinical trials were in the pipeline, far more than a decade ago, and that the pandemic had accelerated the use of telemedicine. Medicare has expanded the types of remote services it covers, and the Department of Health and Human Services temporarily relaxed enforcement of HIPAA, the federal patient privacy law, when providers use everyday platforms like FaceTime or Skype.

      And a growing group of companies have proved there’s a business model for improving disease-specific care. One of the most successful, the diabetes-treatment company Livongo, went public in 2019 at a roughly $4.4 billion valuation and was sold to a competitor a year later for about $18.5 billion.

      Livongo “unleashed a belief that you could build these kinds of companies,” said Hemant Taneja, a managing partner at the venture capital firm General Catalyst, one of Livongo’s initial investors.

      Investors have taken note, pouring money into so-called health tech deals. U.S. investors put roughly $32 billion into private health care technology companies last year, a record, and nearly double the amount from 2020, according to PitchBook data.

      Dr. Krishna Yeshwant, a managing partner at GV who is leading its Synapticure investment, learned of the company through a colleague, Graham Spencer, who has A.L.S. Although Dr. Yeshwant, who is a physician, and others at GV have sought ways to help their colleague, he said the firm wouldn’t have invested in Synapticure unless it was a clear opportunity for big returns.

      “You can lose a lot of money solving complex issues for friends,” Dr. Yeshwant said.

      Synapticure makes money much the way a typical doctor’s office does, billing insurance companies for its services, including neurological consultations and counseling. It does not charge patients any additional fees.

      The company’s nurses, counselors, neurologists and medical assistants help patients sort through their existing care and connect them with providers who can fill any gaps. The company also monitors current and pending clinical trials to see which of its users might qualify. With a database of clients who are eager to share their health records, Synapticure hopes to make it easier for biotech start-ups that conduct these trials to find potential research subjects, a costly and time-consuming endeavor.

      “That is a clear need,” said Dr. Eva Feldman, the director of the A.L.S. Center of Excellence at the University of Michigan. She and her team spend roughly four hours with each patient at each visit — about the maximum they can handle — leaving no time to talk about outside research.

      “Right now we only discuss the clinical trials we’re doing, and that’s what every center does,” Dr. Feldman said.

      Mr. Wallach and Ms. Abrevaya — who met while working on Barack Obama’s 2008 presidential campaign and later worked in his administration — began their advocacy by starting a nonprofit, I AM ALS, in 2019 to help advocate for research and government funding. President Biden thanked them in December when he signed a bill known as the ACT for ALS, which expanded federal research and gave patients earlier access to treatments still being reviewed by the Food and Drug Administration.

      But the nonprofit, even with about roughly 50,000 members, didn’t have the capacity to address the problems that Mr. Wallach and Ms. Abrevaya observed.

      “We have pieced together for ourselves what we think is the best care,” Ms. Abrevaya said. “We knew we needed to build a systemic platform that’s available for everyone.”

      “We knew we needed to build a systemic platform that’s available for everyone,” Ms. Abrevaya said.Credit…Taylor Glascock for The New York Times

      Evan Campa, a 40-year-old mother of two who learned she had A.L.S. three years ago, was part of Synapticure’s pilot program. Ms. Campa, of Nashville, had finished one clinical trial and was enrolling in a second one when a team from Synapticure visited her to take a DNA sample that will be continually crosschecked with coming genetic research around A.L.S.

      Ms. Campa no longer dreads visits with doctors. “They always made it clear there was nothing they could do for you,” she said. “Synapticure represents hope. The conversations are always about the next steps and a continued focus on exploring all options that are on the table.”

      Some A.L.S. doctors worry, however, that offering patients too many potential treatments could cause confusion. “A concern of mine is fragmenting patients’ care,” said Dr. Zachary Simmons, director of the A.L.S. Center at Penn State Health. “Ultimately, people will have to decide who is directing their care and whether receiving different types of input is a good thing.”

      Mr. Wallach, however, brims with optimism about what Synapticure can do, even as he’s articulating the challenges he faces personally. His Twitter feed, which has more than 100,000 followers, is an endless stream of gratitude, inspiration and hope.

      “Even after I was diagnosed with a 100% fatal disease I have had high hopes for this life I’ve been given to live,” he wrote on Jan. 8. “That ain’t never gonna change. In fact, every day they get a bit higher.”


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