The Seliger Act (HB701): Testimony for a New Law
My infant daughter is asleep, my husband Jake is dead, and the drug that might have kept him alive long enough to meet her languishes on a shelf—out of reach of other dying husbands and fathers.
I have some very exciting news! Thanks to connections made from Jake’s and my writing, and my appearance on
’s podcast, I’ve had the opportunity to help craft a bill greatly improving access to clinical trials and experimental therapies for terminally ill patients in New Hampshire.My latest essay (below) is the testimony I’ve submitted to the New Hampshire House Committee for Health and Human Services. But it’s more than just a testimony for the state of New Hampshire. It’s a plea: lawmakers and change-makers everywhere, please reach out to me at DrBStillman@gmail.com We can and should improve access to clinical trials and innovative care for terminal patients in every state. It’s good research. It’s good business. It’s good for everyone who is at risk for dying one day. So, it’s good for everyone. I will help in any way I can.
This bill was born from parts of my care-reform wish list, including some really big, but very doable, asks. Bill HB701 - The Seliger Act - would make New Hampshire the leading state for “right-to-try”.
The bill will:
Create a cutting-edge waiver of civil liability (for treatments provided by allopathic and osteopathic physicians and their partner labs and facilities).
Establish telemedicine pre-screening for clinical trials regardless of the location of the patient (patients must currently be within state lines).
Establish remote signing of consent forms, further reducing the travel burden on sick patients seeking care.
Enact a broad pro-treatment, pro-innovation construction provision
Create a right to injunctive relief against regulatory authorities, decreasing the ability for regulatory or law enforcement authorities to obstruct treatment.
The complete text of HB701 can be found here
Please help our fight to improve access to clinical trials and experimental therapeutics for terminal patients, by clicking here and letting the New Hampshire House of Representatives know you support HB701. You can live in any state and show your support. No need to write a testimony, you can just click through. You’ll be asked for the following information:
Hearing date: 3/5/2025
Committee: House Health and Human Services
Bill: HB701
The Seliger Act (HB701): Testimony for a New Law
i. Why is it riskier to keep Jake alive than it is to let him die?
In 2024, an estimated 611,720 people died of cancer, yet only 4% of patients participate in clinical trials. Meanwhile, drugs that have passed Phase 1 trials sit on shelves, waiting up to two decades to be approved for market, while real human beings die because they can’t access them. HB 701 will change that.
I’m writing this testimony while my infant daughter is asleep, my husband Jake is dead, and the drug that might have kept him alive long enough to meet her languishes on a shelf—out of reach for other dying husbands and fathers.
When Jake was first diagnosed with tongue cancer, his doctor clapped a hand on his shoulder and said, “Don’t worry, this won’t be what kills you.” We were assured that the standard of care would likely leave Jake without a small piece of his tongue and maybe some radiation burns. He had a long, generative life ahead of him. We were optimistic. We were about to start a family.
But just a few months after completing radiation, Jake’s cancer recurred.
There are very few options for recurrent head and neck cancer. Surgery is one. A combination of chemotherapy and Keytruda—an immunotherapy drug that works for only 20% of patients with head and neck cancer, but works extremely well when it does—is another. Jake did both.
By the time Jake had surgery to remove the recurrent tumor, his aggressive cancer had spread. His entire tongue had to be cut out.
Two months later, before Jake had even healed from that devastating surgery, doctors found six new tumors in his neck and two in his lungs. The surgeon couldn’t cut out any more cancer. Jake wasn’t responding to Keytruda. The median life expectancy for a patient with recurrent metastatic head and neck squamous cell carcinoma (R/M HNSCC) is six months.
Six months.
We were willing to do anything.
But as we quickly discovered, there was very little we could do—and even less we could do easily.
For a patient on their third line of treatment, the standard of care is:
Spend a few extra months suffering through a brutal chemotherapy regimen and then die.
Or go immediately into hospice and die.
We didn’t like either of those options.
As a biochemist and physician, I immediately began researching alternatives. Keytruda was still an R/M HNSCC patient’s best chance at a durable response. But Jake wasn’t a responder. Could he become one?
Although I’d found a treatment that might do just that, it became quickly apparent that the physician’s and hospital’s fear of lawsuits and regulatory pressure were going to prevent them from helping us:
Research at the University of Pittsburgh (and multiple other institutions around the world) showed that melanoma patients who didn’t initially respond to Keytruda could become responders after receiving a fecal transplant—a procedure in which a patient receives a special enema containing healthy, disease-free feces from another person to change the recipients gut microbiome. An incredible forty percent of Keytruda non-responders in the study became responders.
Jake didn’t have melanoma, but the principles of change your gut bacteria, change your response might still apply. It was certainly a better option than a gruesome death by strangulation as the tumors in his neck rapidly expanded.
I approached a gastroenterologist colleague. I explained that the University of Pittsburgh had completed a proof-of-principle Phase 2 trial. Fecal transplants are FDA-approved only for certain bacterial infections of the gut, but Jake was happy to sign a consent form for off-label use. The risks were minimal—far lower than the certainty of death. We had even found a known Keytruda responder who was willing to donate feces, saving the time and cost of screening new donors.
The gastroenterologist agreed. We would do it–but only after the hospital’s Institutional Review Board approved it and the FDA authorized a single-patient Investigational New Drug (IND) application for compassionate use.
The entire process could take longer than Jake’s life expectancy. We didn’t have time.
We begged. We offered to pay for the procedure out of pocket. That got us slightly closer, but fear of regulation stopped the doctor. He refused to use our donor’s Keytruda-responder stool. We could only use stool meant to treat intestinal infections (for which the procedure was FDA approved)– even though there was no research to suggest that a random healthy donor would have any influence on Jake’s Keytruda response. The doctor said it was our only choice. What if Jake had a complication and the donor stool was blamed?
It was too professionally risky.
Somehow, the law made it less risky to let Jake die.
We begged some more. Jake would consent to all risks. The donor would sign additional waivers. I would sign a legal release. Jake was already going to die, and fast. We just wanted a chance for him to live.
Then the physician rescinded their willingness to perform any off-label fecal transplant at all.
They didn’t have time to fight the red tape. They understandably feared censure and risk to their license. We would have to find another way.
ii. The Kafka-esque search for a clinical trial
While we searched, Jake underwent another round of chemo. The side effects were devastating—he lost weight, grew weak, was constantly nauseated, and struggled to get through the day. We needed an alternative, but one rooted in science. I suddenly understood why quack cancer clinics promising miraculous “alternative” cures like high-dose IV vitamin infusions thrived on the dollars of desperate patients. We were willing to try anything. But we wanted to try something that actually had a chance of working.
Our only option was to fight our way into a clinical trial.
I’ve been a physician for 13 years. I’ve worked in hospitals, cared for thousands of patients, and coordinated care. I was unprepared for the bureaucratic and personal nightmare of navigating the clinical trial system.
The first shock? Ill patients, many undergoing chemotherapy which leaves them, vomiting and immunocompromised, must physically show up at most hospitals to establish care—often hundreds of miles away—just to learn whether a matching trial even has an open slot.
We tried calling hospitals first, asking if a trial had space before traveling. The answer was always the same: No one could tell us anything until Jake had an appointment.
We’d have to get Jake —who could barely walk to the bathroom—on a plane. First, for the screening appointment. Then again, to sign consents, which occurs separately from the screening appointment. Alternately, we’d have to pause his chemo, which was only barely beating back the rapidly advancing cancer.
“I only have two, maybe three trips in me,” Jake said.
I didn’t know how he could even do that much.
I wasn’t just about to lose my husband, and our future baby wasn’t just about to lose her father. Science was about to lose a data point.
I don’t say this to be crass or cynical. Data points—real sick people trialing drugs—are what keep other people’s husbands and fathers from becoming statistics.
The biggest bottleneck in the clinical trial system is recruitment and retention. It’s hard to get patients, and it’s hard to keep them. According to JAMA, the clinical stage (phases 1, 2, and 3) accounts for 68% of total trial costs. The longer a trial takes, the more sites shut down due to poor recruitment. The longer it takes for a drug application to reach the FDA, the harder it is for patients to participate, and the more expensive the process becomes.
Why do we make it so hard for dying patients to access the only treatments that might save them?
Thankfully, some hospitals allowed telemedicine-based screening. But there was a catch: to legally use telemedicine—even just for a clinical trial screening, not for diagnosis or treatment—a patient had to be physically within the same state as the hospital.
These telemedicine restrictions had been lifted during COVID without issue, yet they were reinstated just before Jake became ill.
Of the twenty trial sites we found, eight allowed telemedicine screenings. Thanks to those, we were able to schedule all Jake’s appointments within a week.
Even getting that far—knowing how to find compelling trials, what to ask for, connecting with the right coordinators—required a level of expertise I had only after nearly twenty years in medicine. How would the average patient manage this? They wouldn’t.
Neither of our top two trial sites had slots available for Jake. If not for telemedicine-based screenings—an option not available at all at many hospitals due to outdated laws—we would have missed Jake’s last chance. Instead, during screening appointment #7, Jake was able to secure an open spot at a trial at UCSD, pending eligibility testing.
Two days later, Jake had another dose of chemo and signed the consent forms to join the study, all in the same day. If not for UCSD also allowing remote consent signing—a rarity amongst hospitals, but another simple change that could save lives—Jake would have lost his spot in the study. Instead, he provided a quick signature via Docu-Sign after a thirty minute phone call
iii. Hope in a bottlstuck on a shelf
The trial drug, Petosemtamab, halted Jake’s cancer almost immediately. It had none of the brutal wasting effects of chemotherapy.
Suddenly Jake could think again. We took walks, started writing a book, even went to the gym. I got pregnant with our daughter via IVF.
Jake was lucky. At the time, Petosemtamab was only available in the U.S.A. to a handful of patients, and only at the UCSD study site.
70% of trial patients had a similar, positive response. Petosemtamab was lengthening the lives of patients with advanced, metastatic disease by a median of six months, with some patients still on the drug at two years. That number is revolutionary for metastatic head and neck cancer patients. For comparison, the last big breakthrough in treatment was a brutal chemo regimen that extended patient’s lives, and their suffering, by only two months.
Why was Petosemtamab,such an incredible option, unavailable to most?
Petosemtamab is currently languishing in additional trials. Merus, the makers of Petosemtamab, start new phase 2 studies that may take years to complete before an application for approval is even filed.
If Petosemtamab had been available under right-to-try laws, we wouldn’t have wasted precious time navigating a broken system. It might have halted Jake’s cancer sooner. It might have saved part of his tongue. It might have made surgery successful. He might have gained years. He might still be alive. Yet the drug sits on the shelf collecting dust while the patients who would benefit die.
The story of Petosemtamab is the story of dozens of promising drugs for terminal diseases that exist but remain out of reach.
HB 701 will change that.
Jake wrote:
When I am dead and buried, at least those who I love and who love me will know the FDA protected me and millions of others like me from ourselves. Thanks, FDA. But the dead do not vote and do not agitate for change, so the system is likely to grind on.
Jake’s voice isn’t silenced just because he’s dead. His arguments for why we need clinical trial improvements and his plea for a better “right to try system” and the tragedy of the invisible graveyard can be read on his website.
And those like myself who still love the dead—who know the dead could have suffered less, could have spent their last months with family instead of fighting bureaucracy—will keep agitating for change.
I won’t stop.
Not until terminal patients are given more opportunities to live than they are given opportunities to die.
We can do better.
Simple, easily enacted changes—like allowing telemedicine screening for clinical trial slots and remote consent signing—would help the system work more efficiently. Expanding right-to-try access would give dying patients the chance to live better right now.
This testimony isn’t just about love for my husband. It’s about love for progress and innovation.
Jake wanted his death to mean something. Part of that meaning came from pushing science forward.
HB 701 won’t just save lives. It will improve the quality of the lives being saved.
In the end, the best argument for change comes from Jake, who died waiting for it:
"It’s too late to save my tongue, but it may not be too late to save the tongues and lives of others."
How do we all go support this everywhere
Fascinating and devastating and somehow still full of hope. I love reading your work because I learn so much! And at the same time my heart breaks for everything you’ve had to endure to learn this yourself and share it with the world