Indu Navar, founder of Everything ALS, speaks with Pharm Exec about how she lost her husband to the disease and how she's trying to improve the way its diagnosed.
Diagnosing ALS is a difficult process for patients experiencing symptoms. After the death of her husband, tech entrepreneur Indu Navar founded Everything ALS, and organization she hopes will refine and improve the way ALS and other neurological conditions are diagnosed.
(Pharm Exec:) What inspired your work with Everything ALS?
Navar: My background is technology and I have electrical engineering and computer science masters. I really came in from the technology perspective I was on the founding team of what today is known as WebMD. I started my own company about 20 years ago when manufacturing was taking off and the tech infrastructure helped manufacturers accelerate their products.
My husband, Peter, was at Amazon for 18 years. He was there very early, joining in 1997, and he helped build the Amazon Cloud. Years later, I exited my company and Peter celebrated his early retirement and we really focused on investing and advising start-ups, along with traveling. Peter’s first symptom was foot drop and his ankle wasn’t working properly. We went to the neurologist very early and what we heard was come back after eight or nine months, we’ll know whether its something simple or fatal. This could be a progressive disease and you would have two-to-five years to live.
Can you imagine the shock that? First of all, you could have a fatal disease. He was 49 at that point, and he found out he might die in a few years. Secondly, we just had to wait for months to see how it progresses. He said, “is there anything we can do in the midterm?” They said no. It’s the same answer regardless of what hospital you go to.
Our takeaway was that a lot neurological diseases have a wait-and-see approach, even when you go to the doctor early. A lot of patients don’t have the privilege to go early, whether it's because of denial, a lack of time, or family commitments. By the time you go, you’re already degrading.
(Pharm Exec:) What struggles do ALS patients face during the diagnosis process?
Navar: Fast-forward two-and-a-half years and Peter was diagnosed with ALS. We realized that all the mechanisms we use are 50 to 70 years old, there’s no real change in terms of how we diagnose or the method of elimination (where they test for other diseases to rule them out). I remember hoping he had a brain tumor because at least we would know what it was and avoid an unending diagnosis journey.
There is a diagnosis fatigue that happens after several years. We have over 5,000 families we support in Everything ALS and each one has the same story. When you ask them when they got diagnosed, they know the exact date and sometimes, even the time, because that is the death sentence.
It happens after several years of tests and even surgeries, hoping that it was Carpal tunnel. Our medical system is set up in a way where it’s like a hammer looking for a nail. If you go to a chiropractor, it’s a chiropractic issue. If you go to orthopedic, it becomes an orthopedic issue. A lot of patients get surgeries, but they don’t heal and it escalates into needing a neurologist.
(Pharm Exec:) How is your approach different than the traditional pharma industry?
Navar: We came from the data world and we did a lot work with Peter. We collected a lot of videos, his stats, and his progression. He was shocked that when we were doing trials and therapies, they often didn’t even know if the therapy was working. They just had to wait and see.
There was a lot of “we don’t know,” and that’s a great opportunity to apply what we knew from technology, machine learning, and AI to know these things.
(Pharm Exec:) Did your husband contribute to this approach?
Navar: Time wasn’t on Peter’s side. He passed away in August 2019. He was such a brilliant person and we would brainstorm what we would do if we had known this problem existed. Following that, we started Everything ALS, and the goal is to bring technology innovations to ALS and if we crack ALS, these methods would be applicable to other neurological diseases.
We keep thinking that we understand more science and biology, but we all know that if you don’t know how to measure it properly, it’s really hard to prove something. Again and again, ALS patients are put into trials who are in the equivalent stages of the disease to stage four cancer and hope that a miracle will happen.
(Pharm Exec:) What were some of the problems with the way data was being collected?
Navar: It’s really hard to diagnose at stage and the measurements we use are self-reported outcome, where we ask the patients how they feel from zero-to-four on various factors (salivation, speech, etc.) The problem is that people don’t often know what a two or a three is in these areas. Covid-19 taught us how people can be unreliable with medicine.
Self-reported data hasn’t been proven to be accurate, but we take it as a gold standard today for FDA approval. When Peter and I were looking at it, we said there is no light at the end of the tunnel here if we don’t fix the infrastructure. That’s our mission here, working on citizen-led research and open innovation.
We’re changing the process as well. We recruit people from our own advocacy, such as social media, and bring in a lot of people and expediting recruitment. We’re bringing people into our studies at a faster rate than in the traditional institutions. We are confident that we can accelerate the rate that we are bringing people in and also the improve the diversity of the test subjects.