Please be dying, but not too quickly, part 2: The patient's perspective

The right hand doesn't know what the left hand is doing: from investigator calls to taking back (almost) all the bad things I've ever said about New Jersey

Part 1 is here: A clinical trial story. This is Part 2.

Part 3 is here: The end of the journey.

If you need help finding a clinical trial or you’d like to get in touch to talk more about how we can make this process better please reach out to DrBStillman@gmail.com. I’d love to talk.

First investigator call: Moderna

Now that Eileen, Jake, and I had a viable list, I needed to find a way to go from “we want this trial” to “Jake is now getting the trial medication.” Based on the opaqueness of the process so far, and the slow-moving nature of hospital systems, it felt safe to assume that getting the study medication into Jake wouldn’t be quick or easy. It felt like Jake’s clock was ticking. Without direct guidance from an oncologist running a trial, it wasn’t clear what the steps to getting the study medication even were. I decided to reach out to every primary investigator running a study of interest to find out if Jake was eligible, if there were spaces available, and what we needed to do to enroll. Eileen focused on the treatments themselves. Now, I had to figure out how to navigate the actual healthcare system.

I decided to start with Jake’s find first: Moderna. Moderna’s ClinicalTrails.gov listing for mRNA-2752 provided the names of hospitals hosting the study (Mass General, Providence St. John’s Medical Center in Santa Monica, Yale, University of Colorado—Denver…), but no contact information. The Moderna website listed a clinical trials help line, and I needed help. I called. During the call, a woman said that yes, Moderna had a list of phone numbers and e-mails for each trial site and would be happy to provide them, but she wasn’t allowed to send an email, or fax, or even a carrier pigeon. The information was printed out in a binder, and she could only read the contents aloud to me—a process which took a half an hour, and seems representative of the ways basic technology isn’t being adequately harnessed.

Armed with my list of mRNA-2752 sites, I began calling. University of Chicago was the first to pick up, and I spoke with the primary investigator (PI). He reviewed Jake’s case and agreed that the Moderna study sounded like a good fit after we discussed Jake’s clinical picture; the PI mentioned that the study was filling up fast, but they still had a few spots, and why didn’t he go ahead and hold one for Jake while we worked out the next steps, which included Jake coming to Chicago for in-person consent and eligibility and screening tests?

Yes, why don’t we? I agreed, feeling a surge of dopamine bathe my brain, satisfied that the second part of the process was going to be much simpler.

The feeling didn’t last. It turns out that the U Chicago PI was uncommonly helpful. Most other Moderna sites weren’t responsive to my initial queries, so I decided to keep going through the other trial possibilities. For each of the top thirty trials on my spreadsheet, ClinicalTrials.gov listed around 10-12 actively recruiting sites with either a phone number, an e-mail or both.

A number of less-encouraging things happened as I called and emailed every site contact trying to get more information about eligibility and secure a spot:

• Only U Chicago would request a trial slot be held (pending an eligibility screening period prior to being offered an official place) for Jake based on the data provided and a phone conversation. And only a small (but incredibly helpful) percentage of clinical site coordinators or primary investigators (PI’s) would even tangentically  discuss eligibility without Jake first showing up at the hospital for a (paid) doctor’s appointment to  “establish care.” . Telemedicine? No: on May 11, the feds declared an end of the “public health emergency” that allowed telemedicine across state lines.  We couldn’t even confirm which studies could still request new participants and how soon they were likely to be full Just allowing telemedicine for clinical trial work would alone help the patient experience enormously. This turns out to be one of the key inefficiencies with the system, and we’ll talk about it in the next section

• E-mails and phone numbers were often wrong, so I wasted time trying to find the right person to contact. One phone number for a clinical trial directed me to a pizza parlor in New Jersey. Their Yelp.com reviews were terrible, and I have no commentary on the curative powers of their pepperoni. 

• Phone numbers routed me to the right hospital, but not the right department, and no one could forward me to anyone who had ever heard of the clinical trial.

• Studies listed as “recruiting” were no longer recruiting, or had just closed, but might be recruiting again soon, but no, the person on the phone didn’t know when. There was no way to get on a waitlist. You know how shopping sites will let you enter your email and get an alert when the item you want is back in stock? Almost no one in the clinical trial space will do such a thing. Want to get a pair of pants from Outlier that are out of stock? You can ask for a notification:

         Want to get in a clinical trial that might save your life? Keep calling every week.

• Investigators and coordinators alike seemed confused that we were calling to find out about specific studies, since we weren’t already in the area. “Isn’t there anything closer to you?” many asked, as if promising trials were so commonplace that proximity could be used as a reasonable deciding factor. Unfortunately, there had been only one study, low on our final list, in Arizona (where we live), and that study wasn’t recruiting. If moving somewhere for a trial raises the odds of saving Jake’s life, then we want to move. Many were confused by this desire. I was confused by their confusion. Aren’t a lot of people in our position? Don’t a lot of people want to substantially raise their likelihood of living, and their loved ones’ likelihood of living?

• Questions about efficacy, tolerability or other study benchmarks, even to clarify already-published early phase data were mostly stonewalled, though regretfully, as “I’m not allowed to discuss that.”

A number of encouraging things happened too, mostly by e-mail. Many sites wouldn’t discuss trial eligibility without Jake showing up in person, though some would. Since every study had anywhere between 1–15 sites, and I was contacting every site for every promising study, I only needed one helpful, humane person per study to help me generalize and confirm my evaluation of Jake’s eligibility, and, preferably, a few more to discuss availability in various geographic regions to narrow down the potential locations.

If we could be closer to home for the same study, or in a place with friends and family, that would be preferable—but we were ready to move. Moving isn’t possible for everyone, but note that many studies also appeared “commutable,” with treatments occurring every few weeks or every month once underway, allowing the patient  to travel to receive the dose of study drug, and then return home.

Usually, the contact person listed for the trials wasn’t the primary investigator. When I could get the primary investigator’s contact information, though, and e-mail the PI directly, they were much more likely to show curiosity about Jake’s case.[1]

I crafted a standard “ask:” the body of the email shared a few relevant pieces of Jake’s medical information, as well as a personal story. I attached a clinical summary I’d written, which included my one-page description of relevant history, imaging, pathology and labs, along with PDFs of recent imaging, genetic sequencing, labs and pathology reports. The reader could answer most of the eligibility questions across sites by opening a single, simple zip file.

This is another spot where being a doctor came in handy: I did the work analyzing and providing the medical information the PIs otherwise would have had to spend picking out from a 500-page chart (cancer patients have voluminous medical histories). Normally, I presumed, picking out medical information was part of the “establishing care” doctor visit, but, since I was a doctor and knew Jake’s medical history better than anyone, it seemed much more efficient and would, hopefully, save a lot of wasted time and disappointing appointments. The clinical trial process already wastes a lot of time, as you’ve likely inferred by now.  

Doctors spend our careers taking exams that involve quickly synthesizing short bits of organized clinical information to answer a question, so that’s how I organized the email: The closer it looked to a United States Medical Licensing Examination® (USMLE) board question, the more I figured it would be answered by reflex. The strategy worked. I too could be baited by USMLE-style questions. I had almost a 10:1 response rate for e-mails, and if a single sympathetic PIs was willing to, if not offer a trial slot the way U Chicago had, at least let us know if a study were closing, a poor match, would be waitlist-only, or that Jake was unlikely to meet some previously unclear eligibility criteria, they could save us so much wasted time and energy. With the exception of U Chicago, UC—San Francisco (who was willing to discuss Jake’s case in tumor board prior to scheduling an appointment), and University of North Carolina (who placed Jake on a waitlist for a trial and told us not to wait because a slot was unlikely to open), there weren’t “official” recommendations or promises.

Once I was able to have the digital equivalent of a private moment alone with a receptive PI, it finally felt like small secrets were being whispered in my ear and, if I could just put all the data together, I could narrow the search to fewer trials, and therefore, fewer hospitals where we might have to establish care

I developed a Pavlovian response to the sound of my Outlook email inbox alert. I used the address for nothing but Jake’s trial search, and, whenever I heard the soft chime, my heart sped up and I’d rush to the phone. When I opened the e-mail, if it contained even the smallest amount of good news (“I’ll pass your e-mail to our PI,” “we may have a slot opening up,” a suggestion of who to contact next), I’d flush and my body tingled. I felt invincible, flooded with endorphins, like I could save Jake solely through the power of information gathering. It was one of the most unexpectedly pleasurable things I’d ever felt. I hadn’t been prepared for that feeling.

Suddenly, I fully understood people addicted to gambling, sex, or online shopping. If I could reliably get that kind of dopaminergic hit from putting down a little money on cards, I’d do it to the detriment of my entire life. Motivated by chemicals and love, I kept a spreadsheet of every piece of communication, to make sure that I didn’t miss a single trial opportunity. There wasn’t room for error.

Now where do we go?

I’d hoped to find a few large sites each hosting multiple trials of interest. This would make choosing where to go simple. Things didn’t work out that way: while large, academic centers hosted many trials (most of them phase 1 first-in-human studies), few hosted multiple compelling trials.

But there was no reason to travel just for quantity. Most regions have at least one center that hosts multiple phase 1 trials. Since early phase-1 trials are largely a gamble without much supporting data, we could establish care at the local Honor Health Research Institute, which had a large phase 1 program.

As I was contacting seemingly every HNSCC research center in the United States (which felt like canvassing the galaxy), Dr. Katherine Price got in touch with us again (you may remember her from earlier in this monster essay / guide: “I called another doctor we’d seen, named Katherine Price, who is at Mayo Rochester. She reviewed the case and was (and is) incredibly helpful—one of the heroes of this story.”)

Dr. Price had reached out to UC-San Diego, Memorial Sloan Kettering and MD Anderson on our behalf. She confirmed my suspicion about quantity: MD Anderson did have a lot, but no trials on our top 15 list, and no especially promising phase 1 trials. Also, we couldn’t get an appointment at MD Anderson until the end of August. Because there’s a 28-day screening period for a trial, the longer we had to wait for an appointment to establish care, the later that period started. We bumped MD Anderson to the bottom of the list.

Dr. Price recommended two studies in particular at UC-San Diego: one for BCA101, an attack on a protein commonly over-expressed by tumors, and another for MCLA-101 / petosemtamab, which also attacks EGFR as well as an additional pathway called LGR5. She thought the target was promising and early phase data looked good. The petosemtamab study was closed, but I emailed the PI at UCSD and found out that new spots would open “probably in a few weeks.”

Dr. Price recommended MSK in New York be one of our in-person visits, but there hadn’t been any highly-ranked studies on our list there. We learned, however, that MSK also had the BCA101 study. Although BCA101 was low on Eileen’s list, Dr. Price thought we had under-estimated it, and her friend, who was the PI at MSK, would call us to discuss and help us set up an appointment.

This was a moving target.

Our hospital list looked like this:

• University of Chicago

• UCSD

• Memorial Sloan Kettering

• UCSF

• University of Colorado

• Sarah Cannon in Denver

The top three sites were spread across the country. Would Jake be able to stop over in Chicago on the way to New York? Would we even be able to schedule appointments that way? Should we use a visit for the U Chicago study, because a spot was at least held, even though, over the week, it had begun to seem less promising than others? Was it better than being left with nothing but a local phase 1? Except for UCSD, no sites had more than one promising study, and UCSD’s second study was currently closed, so quantity alone wasn’t much of a deciding factor.

I wished I’d studied game theory.

The obvious solution—telemedicine for the initial appointment—came with complications. As I mentioned above, during Covid, telemedicine could be practiced across state lines; this means that a doctor in NY with a NY license, could see a patient who was sitting in Arizona, even if the doctor didn’t have an AZ license. There was no difference in how you examined, spoke to, and treated a patient on video, no matter where either party was sitting. I know, because I treated patients via an online urgent care all across the country during Covid, and managed to provide nearly identical care to patients across multiple states. The telemedicine restrictions had nothing to do with quality of care, and were really just a question of state medical licenses and liability. Suspending them during Covid had only resulted in an increase in convenience for telemedicine patients. As of this writing, if you aren’t physically in a state your physician is licensed in, they can’t see you via video. Telemedicine is clearly most useful to the people who need to see a particular physician but don’t live nearby, but I don’t make the rules (or the money from those rules).

Establishing Care: Or, this meeting could have been an email

It seemed obvious to me that the University of Chicago’s willingness to pre-screen, hold a spot, and then have Jake fly out with a clear plan forward was the most humane. But no one else was willing to do it. There was a consensus among other sites: Jake had to be seen in person before trial options could be officially disclosed, and slots requested.

Jake, battered by chemotherapy, didn’t have the energy to travel, fly, and establish care at multiple hospitals.

“I really only have one or two trips in me,” he said. His look and affect implied even one trip would be brutal. He was just two to three months out from a massive surgery that could have killed him.

What did we have to base a decision on so far?

• I had an Excel spreadsheet ranking existing studies, most but not all of those studies found by Eileen.

• I’d deleted a few studies that had seemed promising but, thanks to PIs who were willing share information, had learned that that the trials were soon going to be shut down for ineffectiveness—a reminder that we were making educated guesses, but still guesses.

Another spreadsheet ranked studies that Jake appeared eligible for, and that showed at least oneof the following good features:

1.     Positive feedback or suggestions that the early data was promising from the PI

2.     Open slots (or anticipated some soon)

3.     The geographic locations of the top 15 trials based on distance from home (Arizona), and

4.     A note if two or more studies on that list were hosted at one site.

There were 15 hospitals at which we could establish care, although our top six from the previous section remained.

We also had two important confounding factors:

1. Jake was too exhausted to commit to more than two different out-of-state trips, and we had to schedule them around his brutal chemotherapy schedule.

AND

2. Just because a spot was open now, didn’t mean it would be later. Trial spots opened and closed regularly, and, in the time between now and a “care establishing” doctor’s appointment, the spots might be gone.

Working with Eileen and Dr. Price, I found some other promising sites.

Now our list looked like this:

• University of Chicago

• UCSD

• Memorial Sloan Kettering Cancer Center (MSKCC)—NYC

• Mt. Sinai—NYC

• UCSF

• UCLA

• City of Hope—Duarte, CA

• University of Colorado

• Sarah Cannon Research Center in Denver

• University of Oregon

• Fred Hutch in Seattle

• University of Michigan

• University of Pittsburgh Medical Center

• Dana-Farber Institute in Boston

• Hackensack Medical Center

Why couldn’t we just request official remote screening appointments that were based on Jake’s data, then see what trials could be offered? This would circumvent the problem of Jake being seen via telemedicine, as only his data (which he signed consent via the electronic medical record to have shared), would be evaluated by a physician. If the PI or clinical trial team evaluated Jake’s data, they could screen him for initial eligibility, inform us if the study was open, if they had spots, and hold one for him contingent on his arriving within a set number of days to officially establish care.

Jake could then compare available studies within a certain decision timeframe and commit to showing up for the required in-person appointment to officially screen for the study. Official screening, including (possible) biopsies, imaging and blood work would then be completed before a finalized slot offer. We couldn’t do that because hospitals don’t offer remote screening appointments or almost any other options that would streamline the process for both patients and for researchers. That would be too easy and too convenient for everyone involved. What is offered, then?

Bear with me here, some of this explanation is going to sound nonsensical because the process is nonsensical. I didn’t make the system. I’m going to explain how the process works, from what I have experienced, what the real reasons I think there are for it, and how you can work within the system.

To officially be screened for a clinical trial, and matched with one you appear eligible for, you have to “establish care” with a given hospital system. “Establishing care” means, again, making a doctor’s appointment with an oncologist at the hospital. Before the appointment, the new hospital will ideally request your medical records from your previous hospital (a process that can take between 2 minutes and 2 weeks), and—most importantly—a chart is opened for you at the new hospital. The chart is created when you make the appointment and speak to a new patient coordinator who puts your information in the system and takes your insurance card. Hospitals are crippled without the chart. Without the chart, you don’t exist in the system, and therefore you don’t exist. It’s very, very difficult to get hospitals to speak to people who don’t officially exist, which is why all those emails and phone calls to investigators were only a backdoor way to try to narrow the options.

Once the chart has been made, and your insurance has been run, you are a person who exists in the system, but, until you’ve had a first conversation with the physician you’re scheduled to see, the physician can’t officially do anything for you, or offer you any advice, even though they can now pull your old medical records. Although you will be able to send questions to your physician via the electronic chart one day, this doesn’t become an option until after you’re first appointment. Pulling your medical records allows the doctor who will see you to review your history, lab results, and imaging—and create a summary of who you are and what you might qualify for. This is what I had done for Jake and sent out to the investigators when I was e-mailing for help, so that they could review his information quickly and easily, without a chart.

If you don’t have a chart and an insurance card? You’re not a person. You say you’re a person without those things? Sorry, not according to hospitals.  

What happens at this initial, in-person appointment that’s so important that people on chemo have to fly across the country to achieve it? Not that much, based on our experience of doing about ten of these intake processes: the oncologist or coordinator looks at your chart and then finally reveals what trials are open and which you might qualify for. More on that shortly. Telemedicine rules allowing appointments across state lines had been rescinded, but some hospitals allowed telemedicine appointments as long as the patient—Jake—would be within state lines at the moment of the visit. So, we decided that we were going to be within state lines and booked the appointments. We visited many states, but we were always visiting in places that were not close to the medical center. This worked out surprisingly well. I think most oncologists realized what was happening and, for obvious reasons, didn’t care.

The Appointments

Some hospitals didn’t give us the telemedicine option, even if we were going to be in state—just another part of the state. UCLA and MD Anderson, for example, won’t consider telemedicine, period. City of Hope in Duarte, who had initially scheduled us for a telemedicine appointment, messed up and put us with the wrong provider. They canceled the morning of our telemedicine visit and couldn’t reschedule us for weeks.

MSK didn’t allow telemedicine, either. But they had a promising study, and we’re from New York. If we went to New York we could also visit Mt. Sinai. Mt. Sinai had a study on our list, though it was closed to new patients. MSK and Mt. Sinai would let us attack two studies with one visit. While in New York, we could also try to establish at NYU. We decided it was worth the flight for these reasons. Luckily, in late July the MSK PI called me (the doctor-network saved us: she’d gotten my cell from one of Jake’s oncologists) and said that their study arm was closed, not to waste Jake’s energy on a flight, and that she’d call us if a spot opened. Coming would net us no new information. Bless her.

I was so grateful to her for this basic kindness that I cried. Instead of risking a flight during the week Jake was at his most immunocompromised (one week after chemo), we could get the answer we needed from her with a simple call. I thanked her so many times by text she asked me to stop. But these kinds of seemingly simple, easy to accomplish interactions, saved Jake from unnecessary stress, and saved us from losing out on other options.

Incredibly, University of Colorado, Sarah Cannon, UCSF, UCSD, Hackensack, and Fred Hutch were all willing to do virtual visits, all within two weeks of my initial approach. We scheduled Jake’s in-person screening tests at U Chicago for later in August in the event that turned out to be the best final-option, waited for the phone visits, and started establishing care locally.

Our first visit was to Honor Health in Scottsdale, a 15-minute drive away. We had a telemedicine visit on July 25 with someone who just wanted to gather information and then an in-person visit on July 31. The in-person visit confirmed my suspicions: This meeting could have been an email. The physician was nice, and he had gone through Jake’s chart. He reviewed the clinical summary he’d made for Jake with us, asking us to fill in any blanks. So, I offered to send him the one I’d written, which he looked at in real time, and seemed satisfied. He was missing the genetic sequencing, which is a key component of identifying certain trials, so I forwarded that by email. At the end of the visit, he said he’d look through the available trials, thought there were a few that fit, and would get back in touch with us. Once we chose a clinical trial, then we’d started the screening process.

The screening process is defined as up to a 28-day period of in-person imaging, testing, and any necessary biopsies that confirms eligibility for a trial. The screening process doesn’t start the day of the initial visit, though a consent could be signed that first day if you had a trial to decide on. But the screening trial can’t start until you have the initial visit and then sign consent (University of Chicago remains the outlier in making the pre-screening process easy).

Can anyone give me a compelling reason why this had to be an in-person visit? I can’t.

But Honor Health was local, quick, and easily scheduled, so going through the Honor Health in-person process felt like a free square on our bingo card. The strangest part about it was that our local oncologist, once we found out (through our own search) that there were no in-house trials for Jake, never thought to refer us to (or even mention) Honor Health or any of the other local hospital that might have trials. We had to find that on our own.

Telemedicine: “Why yes, we happen to be in your state.”

The next visit was via telemedicine with University of Colorado on August 3. Colorado was hosting the same Moderna study as the University of Chicago, and Colorado was one of the sites we were told had “a large number of research studies.” Prior to getting the telemedicine visit, we were struggling with whether this should be one of Jake’s in-person visits.

The visit was similar to the one at Honor Health: A very nice doctor came on the screen, explained what a clinical trial was, confirmed receipt of medical records and said Jake would be eligible for a few Phase 1 trials. She said she’d email us in a few days with the names of the studies that might be a good fit, and discussed a few she was already familiar with. When we asked about the Moderna study, she offered to put in a request for a slot. We’d hear back within a few days, and it was nice meeting us. You too, we said, and closed the video.

It was a brief, succinct visit.

It was…fine. It wasn’t terribly enlightening. We wouldn’t even hear back about potential open spots in the Moderna studies for days. For that reason, thinking that we might have been made to show up in person was also infuriating.

I talked about these struggles with my friend Kate, a psychiatrist who had, a decade ago, lugged her dying father to various hospitals around the northeast in pursuit of a clinical He’d been suffering from end-stage esophageal cancer and was vomiting in the car from chemo. Kate and her dad were asking the same exact questions we are now.

“Twelve years later, I see nothing’s changed,” Kate said, when I told her what we were going through. Which is a terribly depressing thing to say. Why are we punishing the patients who make scientific progress possible?

When I brought up the madness of the current system with an oncologist from UCSF during our appointment she said, “It’s not an efficient system. I know you had to go through a lot to talk to me. I agree, there should be a better way.” The doctors, once we were able to access them in an official appointment, were sympathetic to our predicament.

The physicians are, for the most part, not the enemy and acknowledge that how things have evolved make no sense. The physicians show up to see the patients on their schedule, and usually have no say about how the hospital system assigns those patients to them, or if they can take telemedicine. The patients want to be taken care of. The doctors want to take care of patients. Most of what people hate about healthcare is created by the hospital and insurance systems- and the doctors hate it too. This situation might (though I suspect it actually doesn’t) benefit someone. The drug companies should want to get faster data by filling trials quickly with the right patients. Making it harder for those ideal patients to get into the trials is bad for them too.

I really can’t see who benefits from the current situation, except for regulatory agencies, perhaps. Is the measly copay for a doctor visit the reason the hospital system won’t do those initial consults via Zoom or Teams or Facetime? That seems pennywise and pound-foolish, but maybe hospitals don’t realize what’s going on, or that they should eat the cost of the initial consult if it means more easily gaining a clinical trial patient. Is there liability somewhere? The feds should suspend telemedicine restriction in general, but especially for clinical trials. That would be a federal solution, so we’ll probably be waiting a while, unless the right person reads this essay.

Interregnum: I know this sounds crazy

Maybe you’re reading this and thinking: “This isn’t real, this sounds insane, maybe it’s fiction, she’s clearly missing some key pieces of information that would make sense of this process.” I wondered that, too. I thought there’s no way that clinical trials work like this. I also kept repeating “you’ve gotta be kidding me” over and over at different moments.

I wish I was kidding. My mission is to try to make it better.

Colorado: Just kidding on that Moderna spot!

Two days after our telemedicine visit with U Colorado, we were informed that the Moderna study, for which we would have flown to Colorado, had met its quota of U Colorado patients and wasn’t accepting more.

Had we traveled to MSK or Colorado, the outcome of days of flying and thousands of dollars would have been Jake being told the two trials of interest were closed. Information that could have been given remotely just as well (and had been), would have, instead, been given in person, and used up limited energy and cash. His only option, then, would have been to join a local early Phase 1 trial, or just die.

Don’t travel for phase 1 trials

We continued to have similar conversations at the hospitals on our list via telemedicine. An appointment with University of Michigan on August 24 was useful, but they didn’t have any promising phase 1 expansion or phase 2 studies. “Don’t travel for an early phase 1,” the doctor said, “You have just as good a shot at responding to an early phase 1 down the street from where you live. No one has any idea if one is any better than another at that point.” This was (mostly) in line with what we had learned with Eileen. I appreciated his honesty.

Things looked up with our telemedicine visit with Hackensack on Aug 14. It was easy to schedule, detailed, and promising. Their best HNSCC clinical trial, RAPA-201, was #9 on our list, phase 2, and they were prepared to offer us a spot to start screening. U Chicago and Hackensack were the only places that, were we to travel to them, it would be to start the screening process, saving us from wasting a trip just to establish care. New Jersey was far from home, from family, and a long flight. But Hackensack’s was an invaluable offer. Hackensack went to the top of our list. In a moment, I took bad every bad thing I ever said about New Jersey, apart from the fact that they still need to build more subways.

Part 1 is here: A clinical trial story. This is Part 2.

Part 3 is here: The end of the journey.

If you’ve gotten this far, consider the Go Fund Me that’s funding Jake’s ongoing care.

If you need help with the clinical trial process reach out at DrBStillman@gmail.com

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[1] Getting the contact information, if it wasn’t listed, involved sending impassioned emails to listed site coordinators, but also, when that didn’t work, calling the clinic and explaining that I needed to discuss a patient with Dr so-and-so, or calling the physician line, or using my academic email address, which, I’m certain, made a huge difference). Most physicians who run trials aren’t in it for the money, and, ostensibly, they’re interested in moving medical science forward and filling up their trials (poor sign-up rate means losing the trial, high attrition, I learned along the way, is also a problem.