Beyond Neurotech: Limits of BCI For People With Disability
Beyond Neurotech: Limits of BCI For People With Disability
Neurotech can't fix a broken safety net. That's on us.
Tabi Haly is a victim of her own success: She got so good at living and working with a disability that the government took away her healthcare.
None of it makes sense, but her recent story in NPR is crystal clear in summing up the state of the US disability care market: Broken but navigable by some, but dehumanizingly backwards when it comes to policy and payment.
Her saga is not just a call to action for policymakers, but a lighthouse for BCI and neurotech evangelists who talk nobly about helping those with disability, but whose efforts, experience, and realms of influence still exist largely outside of the healthcare markets representing these people today.
American Dream, American Nightmare
As a 40 year old software engineer living in NYC, Haly works as a team leader on development and coding projects at JPMorgan Chase & Co. She also happens to have spinal muscular atrophy, which prevents her from moving her arms, legs, and body. But once a home health aide sets up her hands on a keyboard with a trackpad, she routinely runs meetings with consultants and colleagues. None of them “have any idea how disabled she is.”
That aide costs $300k per year. Her motorized wheelchair costs $35,000, not including ongoing repair costs. In addition to “tens of thousands of dollars a year in physical, occupational and speech therapy,” Haly is taking a “new, breakthrough medication” that costs $350,000 a year.
Back of napkin that’s a tidy $800k. So who’s paying?
JP Morgan - the biggest bank in America - says their corporate insurance “might pay for some or all of the medicine,” but nothing else. So, Haly has enrolled in New York’s Medicaid program, which covers all of the above costs.
A web search suggests people in Haly’s role earn in the low six-figures, which would normally disqualify her from being eligible for Medicaid. But as a disabled person, Haly gains eligibility through an obscure program called Supplemental Security Income, or SSI.
SSI was launched in 1972 as a safety net program for the disabled and elderly that pays monthly benefits to 7.5 million Americans at a rate of $943 for individuals, or $1,415 for couples. Most SSI beneficiaries qualify for Medicaid, but as per NPR, this 50 year old program “failed to keep up. SSI was started with the assumption that recipients couldn’t or wouldn’t work in jobs where they could support themselves. As a result, its out-of-date rules discourage work. Today, fewer than 10% of people on SSI do work.”
Due to her income, which is above the 1972-calculated monthly threshold of just $65, SSI prevents Haly from starting a 401k or receiving any financial benefits. Therefore, she receives no payments, and only uses it to qualify for Medicaid. However, in July, she got a notice from SSI that kicked her off the program for earning too much.
The Productivity Paradox
Haly’s future is snagged in a heartbreaking and maddening plot twist, one that may seem all too familiar in our Kafkaesque healthcare system. But her tale is not just a story about the safety net in America.
It’s about untapped innovation markets that could emerge from common-sense reforms. “Value” generated from the economic web of treatment, technology, and human care is an umbrella concept, covering how well people with disabilities can live, work, study, and otherwise exist in their day-to-day lives.
Her plight raises critical questions for the future of the BCI field, both for companies building wearable assistive technology, and the numerous players taking their implantable solutions through the FDA and CMS as a class III medical device with the promise of restoring digital autonomy to enable communication, and if they desire, the ability to work.
In an interview with BCI Pioneer Ian Burkhart in The Atlantic six months ago, the writer S.I. Rosenbaum remarked that “the people who receive the first generation of medical implants may find themselves…functionally required to stay unemployed, poor, or even single as a condition of accessing the services keeping them alive.”
It’s not a stretch then to imagine Haly’s story reoccurring to someone else five years down the line, but with the addition of an implanted BCI that enables this person to run team meetings and fulfill white-collar job responsibilities as well as anyone else.
Will that story have the same disastrous ending? Questions abound:
If BCI helps someone generate non-fungible economic value, i.e. it lets them operate as valued and autonomous members of the traditional workforce, or advance their career through education or professional training, or earn prize money through e-gaming, revenue from social media, or even trading crypto, who should pay for the device? The person, a company, an insurer, the government, or some other entity?
As different companies coin metrics of how well their systems help people, from Bits Per Second to Digital Motor Outputs, what is the industry’s collective endgame for demonstrating effectiveness and value? If JP Morgan doesn’t care about assistive technology or caregiving costs today, will they start caring about bits and clicks tomorrow?
Whether or not the employer pays, isn’t the goal to deliver a value proposition that’s a “no brainer?” How can BCI leaders imagine and build a world in which employers eagerly underwrite a disabled employee’s BCI-related expenses? How could this be done ethically, protecting privacy and co-option of user data?
If BCI enables someone to generate a six figure salary by performing the responsibilities of a desk job, does that mean the BCI’s pricetag should go up, because it creates economic value for companies and workers? Or, should pricing be insulated from economic value generation, given the moral hazards of disenrolling disabled people from health insurance for earning too much?
BCI technology alone cannot mitigate hundreds of thousands of dollars per person per year in expenses related to caregiving, medication, and other assistive technologies like motorized wheelchairs. So, how can public and private payers determine value? I’d caution against moving quickly to a world where most BCI companies preferentially build for certain “market segments” in Medicare like ALS or Parkinson’s, but not those covered by Medicaid due to aforementioned challenges.
Last month’s NIH/FDA workshop about Clinical Outcomes Assessments may represent the yellow brick road here. As per remarks on the payer coverage panel from Anthony Sutphin, the acting ombudsman overseeing some of this work at CMS, the agency is looking for functional outcomes, patient experience, improvements to activities of daily living and overall quality of life with regards to BCI.
There are many more unanswerable questions about BCI’s value proposition. One underdiscussed area involves the future of “write” applications of BCI to treat Parkinson’s symptoms like a deep brain stimulation (DBS) device does, or in the more distant future, deliver a jolt of what Neuralink’s Head Surgeon Matthew MacDougall refers to as “electric caffeine.”
Bringing it back to today: If we’re promoting “productivity,” we need to talk about the fine print. To be fair, the conversation around working, eligibility, and disability are much more complex than reimbursing a voluntarily implanted medical device.
If BCI could soon grant the wishes of disabled people who want to work, what else needs to be done, and can be done, to support these individuals at a system level?
Unstoppable Force Meets Immovable Object
Earlier this year, I jokingly asked a commercial officer at a leading BCI startup for an example of a half-baked idea in neurotech. He didn’t blink and said that all neurotech ideas start out half-baked.
So, here’s one for the oven: What if the emergent class of BCI leaders used their brains, money and hearts to champion the cause of Social Security and Medicaid reform to shape the markets for BCI as work-enabling platforms?
We’ve entered an era wherein these 21st century companies - powered by decades of breakthroughs in electronics miniaturization, materials science innovation, manufacturing disruptions, cutting-edge machine learning methods, and who are working with an FDA that is more progressive about commercial success than it has ever been - will soon be selling into legacy markets defined and limited by the faceless bureaucracy of comically low income caps, backwards eligibility criteria, and probably some fax machines.
Neither neurosurgeons nor robots can fix this. The good news is, they’re not alone.
My optimism is that BCI companies will rise to the occasion and leapfrog gaps in policy rather than letting their users boil in the waters of broken health coverage.
It will take more of the dialogue begun by BCI Pioneers and disability advocates like Burkhart, ongoing company demonstration of clinical excellence and user value, sustained effort of the FDA’s iBCI collaborative community, as well as the continued emergence of stories from people like Tabi Haly, Alexis Ratcliff, Noland Arbaugh, Christopher Reeve, and many more.
When the world’s longest active BCI user Nathan Copeland says, “BCI Can Do Better,” he is not just talking about a neuroprosthetic.
For better or worse, the enormous public momentum behind this technology has been impacting offices at all corners of the federal government. BCI for movement disorders are taking root in public imagination and private markets at an accelerated pace, with ground softening from the unbridled consumer revolution of Bluetooth, voice UI, LLM, AR/VR, gaming, and productivity software. This frontier will expand to vision restoration for the blind, speech decoding for the locked-in, and other applications spanning cognition to depression and beyond.
Over the coming years, we’ll be living alongside a class of people with restored ability to invest in pursuing their hopes, dreams, and goals. Some of them will want to go to school, create art, or find a job where they can contribute to a mission, like fixing the dang government, or like Haly, lead a team.
Commercial leaders driving this field forward must be more than surgeons, scientists, and engineers; they must push themselves to be visionaries outside of their domains of expertise. BCI represents both a category of medical device, and a techno-social compact. Will these companies’ policy-shaping interests stop after they unlock reimbursement codes in a few years? Or will they throw their momentum behind real market reforms that could transform society and change the world?
Originally published in Forbes on October 22, 2024.