I love to hear your voice, Holbrook.
(slides and audio from Holbrook Tribute at SITC 2016)

/dan 

As seen in the Chattanooga Times Free Press, March 21, 2016, by Steve Johnson

http://www.timesfreepress.com/news/local/story/2016/mar/21/childrens-doctor-mourns-loss-own-child/356292/

"I believe people who go into pediatrics have a calling and not a job," Dr. Alan Kohrt said as he stared out the window of his office off Third Street.

Pediatricians treat children, and most children have a long future ahead of them, he said.

"We don't have as many who die, fortunately, but the ones who do, it's that loss of potential — who could that child have become?"

Kohrt is not just any Chattanooga pediatrician, nor is the child he is thinking about just any child.

He has worked all of his professional life as a children's doctor, most recently for seven years as chief medical officer at Children's Hospital at Erlanger and chairman of the pediatrics department at the University of Tennessee College of Medicine Chattanooga.

But for 38 years, he had his own sick child, Brook, who was born with hemophilia, a rare disease in which the blood refuses to clot. For someone with hemophilia, every minor cut or bruise can be life-threatening.

When you have an often-fatal disease, "you don't make assumptions about your life, that you will live a long time," said Kohrt, a soft-spoken man who often pauses to choose just the right word. "For Brook, especially as he got older, death was sort of his constant companion."

Top of his class in high school and college, Brook Kohrt graduated from Stanford Medical School and became one of the leading cancer researchers in the world, touted by his peers and profiled in The New York Times.

His specialty was the cutting edge of cancer studies — finding ways to stimulate the body's immune system to fight the tumors that threatened to overwhelm it.

And when his illness threatened his own life, Brook used his skill to craft his own treatment, a custom drug he hoped would overpower his body's own antibodies that were rejecting the blood-clotting factor that kept him from bleeding to death.

But he failed, and his father had no way to save his child. And so on this March day, Alan Kohrt is grieving.

Hemophilia is a rare illness. Its victims are almost always men, and it strikes only one in 5,000 male births, said Dr. Jennifer Keates, a specialist in cancers of the blood in children at Children's Hospital at Erlanger. It is caused by a missing gene that should produce a coagulant that causes blood to clot and stop the bleeding.

It has been called the "royal disease" because Britain's Queen Victoria passed it on to at least three of her children who, in turn, intermarried with other royalty and spread it to Russia, Germany and Spain. It caused the deaths of several royals who were involved in what normally would have been minor auto accidents.

While the threat from cuts is obvious, bleeding in the joints can be crippling.

"One of the common things that happens with severe hemophiliacs is that they often develop a joint that bleeds spontaneously," Keates said.

The worst threat is bleeding in the brain, difficult to stop and often unnoticed until it is too late.

Hemophilia ranges from mild to severe. Mild hemophilia is almost a chronic disease, with life expectancy near normal. But severe hemophilia is often fatal before adulthood if not constantly monitored.

Alan Kohrt can still feel the shock when he and his wife heard the news that Brook's hemophilia was severe.

"I can remember hearing the diagnosis for the first time; it just totally changes your life," he said.

From the beginning, there were problems.

Brook suffered his first bleed, in an elbow, when he was 2 or 3 months old. When his parents took him to a hospital, a social worker at first accused his mother of child abuse because there seemed to be no other explanation in such a young child.

The Kohrts lived in rural Pennsylvania, many miles from the nearest hospital, so Alan Kohrt became his son's doctor, injecting him regularly with Factor 8, the blood-clotting agent his body was not producing.

"If you have ever put an IV in your own kid," he said, "it became pretty ominous."

They took all of the normal precautions — Brook wore a helmet to school and occasionally used an elbow or knee brace. Still, because of bleeding in his joints, he needed surgery on a knee, an ankle and a shoulder as a child.

But the greatest threat came from the medicine he was taking.

A new, concentrated form of the blood clotting factor was introduced that gave hemophiliacs the ability to inject themselves with the drug at home.

"The big pot from which it was taken was a pot combining plasma from tens of thousands of donors," said Dr. Alan Cohen, former head of pediatrics at Children's Hospital in Philadelphia and the doctor who treated Brook at the time. "If you had any contamination in any of the blood, when you put 10,000 or 20,000 donors in the pot, you would contaminate all of the vials."

And that is exactly what happened, first with Hepatitis B and C and then with HIV, which was not even identified until 1981. Nationally, 90 percent of all severe hemophiliacs contracted HIV, including Ryan White, whose case highlighted the AIDS epidemic and the importance of blood screening. Many of them died, including White.

"It absolutely wiped out a generation of men and boys with severe hemophilia," Cohen said.

Brook went to a summer camp for hemophiliacs.

"As kids in other parts of Pennsylvania developed HIV, the number of kids at camp every year decreased," his dad remembered. Fortunately, doctors at Children's Hospital were among the first in the U.S. to realize HIV was spreading through the blood supply, and Brook's parents went back to using the older, nonconcentrated form of Factor 8.

"That was a scary time," Kohrt remembered. "[Brook] was very fortunate."

Brook did not cope with his disease by retreating from the world. Instead, he developed a drive to make something of his life, no matter how long it lasted.

"I've never known anybody in my life as focused as Brook," Kohrt said. "My father was stubborn, and I'm stubborn, but Brook was tenacious on what he was trying to achieve."

Very early on, that was clearly going to be medical school. He was 10, his dad said. That was not unusual. His older brother would become a physician and all of his siblings ended up with graduate degrees. But Brook wanted to make a difference.

"The giving back was the most important thing, making a difference," Kohrt said. "While he had fantastic relationships with other people, he basically had no personal life."

Brook married twice, but divorced twice, and there were no children.

"He decided not to have children because he felt he really wanted to do his research and give back to the world that way," Kohrt said. "He and I had incredible disagreements over that. I felt family would give him all that support."

But his son said he had seen how often his father's medical practice took him away from his family.

"'I know how much you've been gone, Dad,'" Kohrt remembered Brook saying once. "'I'm gone even more than you've even thought of being gone.'"

Brook started out studying cancer, and in particular, what are called monoclonal antibodies, cells that will bind to specific other cells. If such a cell can be found that will target a specific cancer cell, it can be used to block a key part of a tumor's cell's functioning or attach something toxic to that cell and kill it. Where traditional chemotherapy kills many cells, cancerous and noncancerous, a monoclonal antibody can attack only the bad cell.

There has been rapid progress as researchers have discovered more and more ways of targeting specific tumor cells, either with drugs or by stimulating the body's immune system to attack cancer cells.

Brook was a leader in the field, working on lymphoma — a cancer of the blood — an appropriate research topic given his own experience with less-than-perfect blood.

"I feel like my experiences have prepared me to provide some level of empathy for my patients who are newly diagnosed with cancer," Brook Kohrt told Stanford Medicine magazine in 2013. "I can really feel how scared they can be because I remember what it was like to be in that situation. What I'm doing now, all of it, is fueled by my personal background with hemophilia."

But Brook's own medical problems worsened.

He had taken increasing doses of Factor B as he got older, and when he needed an operation to repair a fractured leg, replace a knee joint, and put a pin in his femur, he took even more, Kohrt said. His body slowly started to reject the very drug that was keeping him alive.

"He had to have larger and larger doses," Kohrt said. "The specter of death was ever closer."

Brook tackled the problem head-on: If his body was rejecting the cure, he would himself design a monoclonal antibody that would overcome his body's resistance. He succeeded, with help from researchers in Europe, but the side effects were too severe.

"It caused an immune reaction throughout his body, so it didn't work," Kohrt said.

He turned to a new experimental treatment, called bispecific monoclonal antibodies, a way of clotting the blood that did not require Factor 8, and moved to Europe to participate in clinical trials that had not yet begun in the U.S. The treatment seemed to be working, so he took a break a month ago and headed to the Caribbean for a therapeutic retreat.

But things went wrong. Brook developed a staph infection that spread to his blood. He returned to Miami for treatment, but then suffered massive bleeding in his brain, something he had always feared.

He died Feb. 24 at age 38.

In an obituary, The New York Times called him "a hemophiliac who transformed his own chronic condition into a personal and public crusade for medical cures."

In announcing his death, the president of the Society for Immunotherapy of Cancer praised his "significant impact on the field" and said he had "brought his considerable scientific insights and incredible energy to every project."

There is a fund in his memory for Erlanger's new Children's Hospital.

"I have to have an incredible sense of gratitude, that he had the years he had," Kohrt said. "I have to be grateful for all he has accomplished, and how he moved cancer therapy forward."

But there is still the sadness of his loss, made deeper by the knowledge the field is changing, that new cures are being discovered and that his son might have found them himself, if only he had had more time.

There is love and loss in his voice as he tries to explain how it feels to be a doctor of children and to not be able to save his one special child.

"Probably no parent who looks at their child's death, whether it is in a car accident or whatever, wouldn't say if he had just waited five more minutes, he would have been somewhere else but that has to spur us to provide better care to do more research, and that's what it's all about."

And then he adds, softly, "Life is tenuous."

By Robert Koenig, Brandon Kohrt, & Holbrook Kohrt

Conducting research in medical anthropology, one would think that we had a broader view of illness and its socioeconomic context. However, that was not the case when we started filming the documentary The Wrestler’s Second: Mongolia’s Struggle with Yadargaa. Fresh from our undergraduate training, this was our first attempt independently conducting anthropology research and making a documentary. We traveled to Mongolia in 1999 to observe how the shift from communism to capitalism a decade earlier had impacted health and wellbeing. We studied a fatigue related disorder, yadargaa, part of the Mongolian traditional medicine nosology. We wanted our documentary to follow one person with yadargaa as he or she went through treatment for the condition.

After interviewing people with the condition in traditional and allopathic hospitals, we selected Tsoodol, an older man who had recently suffered a stroke and had been diagnosed with yadargaa. We met Tsoodol on the yadargaa ward in a hospital in Ulaanbaatar where he was receiving acupuncture treatment. We were told that the 69-year-old man was famous in the athletic community.  He was a wrestling coach whose wrestlers had won at the famous Naadam competition held ever year in Mongolia. Tsoodol was admitted after suffering from a stroke leaving him with facial paralysis and left-sided weakness. His stroke was blamed not on hypertension, high cholesterol, or an arrhythmia, rather his primary diagnosis was yadargaa.

Tsoodol’s physician said that he needed further treatment and that she was recommending a trip to Khujirt, a health spa in the countryside. Tsoodol said that he planned to follow the doctor’s recommendation. We thought this would be an opportunity to follow the course of treatment on film.

We interviewed Tsoodol and his wife in their felt tent in a crowded impoverished section of Ulaanbaatar. Both Tsoodol and his wife said that chronic worry over their family’s economic state caused the yadargaa.  “I have had yadargaa since 1990 when the economy changed.  After 1990 the government no longer gave us enough money for healthcare.  Before 1990 they paid healthcare costs.  But, now my pension is so low that I must work very hard at selling things at the Black Market,” Tsoodol told us.

Tsoodol could do little to alter the economic structure of his nation.  The social factors impacting his yadargaa were not under his control.  At the moment the only care Tsoodol received was acupuncture. Khujirt, the recommended health spa, was a day’s drive south of Ulannbaatar and was famous for treating yadargaa.  Patients stay for a few weeks.  They relax in the countryside, and enjoy sulfur springs, mud baths, and hot stone massage.  Therapy includes acupuncture and herbal medicines.

As we began the plan to travel with Tsoodol to Khujirt, the issue of compensation arose. We did not want to pay cash to Tsoodol directly. We worried that paying him would be coercion to get the treatment. After lengthy discussions among ourselves and with Tsoodol’s family, we found that the cost for a 14-day treatment at Khujirt would be approximately $100. Under the new healthcare system, Tsoodol was required to pay half of this. This was more than a month’s earning for the financially concerned man. 

We decided that paying for Tsoodol’s cost of the treatment would partially compensate him for participating in the documentary. We had heard of other filmmakers paying for the costs of rituals and ceremonies so that they could film them. This, at the time, seemed comparable in our minds.

A few weeks later we traveled with Tsoodol to Khujirt.  We met with doctors who developed a fourteen day treatment for Tsoodol. That afternoon Tsoodol took a bath in the naturally hot mineral water that flows underneath the resort.  After his bath Tsoodol showed us his hand.  The sulfur water had turned his silver wedding band a metallic yellow.  “Today, my ring became gold from silver.” Then he surprised us by saying, “It is too bad I cannot stay here.  If I stay here for fourteen days, my ring will become real gold.  After that mineral bath, I feel very happy. I should stay, but I have to go to my family in the countryside.” Tsoodol explained that he needed to go visit his relatives in a nearby region of the Gobi. We tried to encourage Tsoodol to do the treatment, but did not want to force the issue.

The next day we traveled with Tsoodol to visit his hometown. While with his family in the countryside, Tsoodol decided that he would receive the treatment at Khujirt after all.  He said that a family member was traveling to Khujirt the next day and could take him back. He suggested that we meet him later to film him as the treatment progressed. We then gave him the $50 to pay for his treatment. Our plan was to return to Ulaanbaatar then meet with Tsoodol again at Khujirt after his treatment was underway. Then, we would go with him to the Naadam festival in his village.

Only three days later, to our surprise, we saw Tsoodol back in Ulaanbaatar selling bowls at the Black Market. Our reaction was a rapid sequence of emotions spanning anger, frustration, to eventual realization of our own misconceptions. The health spa and alchemy of Khujirt like most of the therapy for yadargaa is palliative. It does not correct the underlying problem. Massage and acupuncture was not going to stop him worrying about his families’ money. However, our $50 temporarily helped Tsoodol’s financial stress. Tsoodol revealed our ignorance to the root socioeconomic cause of Tsoodol’s yadargaa. Eventually, we did finish the film, and included in it this encounter with Tsoodol. In the end, documenting these events provided a more realistic picture of the contingencies of illness and economics. When working with documentary participants such as Tsoodol, the ethics of finances and filmmaking similarly cannot be extracted from the immediate socioeconomic conditions of illness and wellbeing.  

SAN JOSE MERCURY NEWS

http://www.mercurynews.com/health/ci_29586201/stanford-oncologist-dies-at-38-complications-from-hemophilia
 
STANFORD - A 38-year-old Stanford Medicine oncologist died last week of complications from hemophilia after falling ill while vacationing in the Bahamas, university officials said Tuesday.

Dr. Holbrook Kohrt, who sought new ways to arm the immune system to fight cancer, died Wednesday in Miami, Stanford officials said.

Kohrt, an assistant professor of oncology at the university's School of Medicine, had a life-long struggle with hemophilia, a disorder that prevents blood from clotting properly, Stanford officials said.

"Holbrook knew that his time here on Earth would be short, and he worked tirelessly to accomplish as much as possible," Dr. George Sledge Jr., a professor and chief of oncology, said in a statement.

"He was an exceptional human being, unparalleled in his brilliance, dedication and persistence. He was passionate about research and making a difference for cancer patients. This is such a loss for his friends, colleagues and the field of medical oncology," Sledge said.

Kohrt arrived at Stanford as a medical student in 2000 and completed his residency, fellowship and a PhD program at the university, Stanford officials said.

His research focused on the idea that the immune system could be trained to recognize and fight cancer and he devised clinical trials to learn whether vaccinating a patient with small pieces of cancer-specific proteins could help prevent the recurrence of solid tumors, according to the university.

A celebration of Kohrt's life will be held March 11 in Hawley, Pennsylvania. A memorial at Stanford will be held at a later date.

ALLENTOWN MORNING CALL

http://www.mcall.com/news/local/burbs/mc-hemophilia-pioneer-muhlenberg-grad-atv-20160303-column.html

The teachers and advisors who spent time with Holbrook Kohrt at Muhlenberg College knew he would go on to great things, and he did.

They also knew he might not live very long, and he didn't. Kohrt, a physician and a faculty member at Stanford University in California, was just 38 when he died Feb. 24 from complications of hemophilia.

Wretched disease. It's a genetic disorder that keeps the blood from clotting, so even a minor wound can become a deadly threat. Kohrt, born in Scranton, channeled his experience with the disease into a career as an oncologist and hematologist and a crusader for hemophilia research and awareness.

The New York Times and other journals published substantial obituaries of the young doctor, who had been researching ways to harness the immune system to fight cancer and other diseases.

"I advised all the pre-med students and he quickly stood out among all the hundreds of them as a superstar," said Lori Provost of Allentown, who was Muhlenberg's health professions adviser when Kohrt, a class of 2000 alum who earned a degree in molecular biology, attended the Allentown school.

"Brook was so engaging on so many different levels," Provost said. "He wasn't one of those people who knew a little about a lot. He knew a lot about a lot. Books were his best friends growing up."

That's true for many hemophiliacs, who are precluded from sports and other physical activities because they have to be careful not to cut themselves. Kohrt, a Scranton native, wore a helmet until he was 7 as a precaution. He also had to learn to inject himself with Factor 8, the clotting element his body lacked.

That wasn't the worst of it.

In the early 1980s, before the advent of blood screening for HIV, hemophiliacs acquired AIDS at an astonishing rate. Kohrt, who had attended a camp for hemophiliacs as a boy, once told his Muhlenberg classmates he was the last survivor among the children in his group. The rest had been claimed by the immune disease.

"When we get to the segment on hemophilia in my course, I still tell that story," said Bruce Wightman, a biology professor who was Kohrt's research mentor.

It was one of many stories Kohrt shared to convey the hardships of the disease.

His parents, for example, a doctor and nurse, were investigated for child abuse when Kohrt was a baby, because he bruised so easily and had so many bleeding episodes that required medical attention.

His teacher and several classmates fainted when, at age 8, he demonstrated how he injected Factor 8.

His neighbors, who had religious objections to blood transfusions, mocked and teased him.

Wretched.

But the indignities and anxieties Kohrt endured over the years only fueled his passion to enter medicine and turn his keen mind to finding cures.

"Brook would produce work when he was a sophomore that was at the level a graduate student would produce," Wightman recalled. "He was on a different plane in terms of his intellectual sophistication and drive. He would lift up other students, too. Other very talented students who might have been perfectly happy to do what the professor asked for would do more when they were working with Brook."

Wightman said Kohrt distinguished himself not only by his intelligence but by his drive and energy.

"He had that in spades," Wightman said. "One project he did that's sort of famous — he basically designed his own research project from scratch to study a rare disease in Mongolia. He got the funding and went to Mongolia. I don't know anyone else who would have thought to do something like that and actually tackled it."

Provost said Kohrt chose Muhlenberg over Harvard for undergraduate studies because he liked the smaller school's familial feel. He passed over Harvard again for medical school, picking Stanford because the program offerings better suited his ambitions.

"What a brilliant mind," Provost said. "A humanitarian, a selfless giver. It's hard. I am still stunned."

STANFORD MEDICINE NEWS CENTER

http://med.stanford.edu/news/all-news/2016/03/stanford-oncologist-holbrook-kohrt-dies-at-38.html

Kohrt, an assistant professor of oncology who suffered from hemophilia, was remembered for his passion for helping patients and advancing research in the use of the immune system to fight cancer.

Holbrook Kohrt, MD, PhD, a noted clinician-researcher at Stanford Medicine dedicated to finding novel ways to arm the immune system to fight cancer, died Feb. 24 in Miami of complications from hemophilia. He was 38.

Kohrt was vacationing in the Bahamas when he became ill. He was flown to Jackson Memorial Hospital in Miami, where he suffered an intracranial hemorrhage on Feb. 22. He died two days later.

His colleagues say they will remember Kohrt for his brilliant mind, his thoughtful and impassioned care of cancer patients, and his unique ability to forge rapid and lasting personal connections with people from all walks of life.

An assistant professor of oncology at the School of Medicine, Kohrt struggled all his life with hemophilia, a disorder that prevents blood from clotting properly. He was open about his disease and how it motivated his research and patient care. In recent years, he had become resistant to the clotting factor used to treat his hemophilia.

“Holbrook knew that his time here on Earth would be short, and he worked tirelessly to accomplish as much as possible,” said George Sledge Jr., MD, professor and chief of oncology. “He was an exceptional human being, unparalleled in his brilliance, dedication and persistence. He was passionate about research and making a difference for cancer patients. This is such a loss for his friends, colleagues and the field of medical oncology.”

‘A true Stanford loyalist’

Kohrt had been a member of the Stanford community since he arrived as a medical student in 2000. He completed his residency and fellowship and a PhD program of his own devising at the university. Described as “a true Stanford loyalist,” he touched the lives of colleagues, trainees and patients with his openness about his own disease and his sincere desire to help others.

 “A compassionate physician and an innovative investigator, Holbrook exemplified the best of Stanford Medicine,” said Lloyd Minor, MD, dean of the School of Medicine, in an email to faculty, staff and students. “Holbrook was among the most brilliant translational researchers of his generation who worked tirelessly to put his findings to work for cancer patients. His bench research on novel therapies to enhance anti-tumor immunity regularly entered the clinic. But to many of us, Holbrook was much more than a brilliant mind; he was a warm and caring friend.”

Kohrt was born Dec. 14, 1977, in Paupack Township in Pennsylvania. The mutation that caused his hemophilia occurred spontaneously and his parents — pediatrician Alan Kohrt, MD, and nurse MaryLou Kidd — were surprised when their newborn son developed severe, unexplained bruising. But after some adjustment, the family took the diagnosis in stride and set about providing as normal a life as possible for their son, while also navigating the very real possibility that the blood products needed to keep him alive could be contaminated with viruses such as HIV and hepatitis.

‘A unique perspective’

 “As he grew older, Holbrook had to inject himself, sometimes on a near-daily basis, with blood clotting factor,” said Ronald Levy, MD, professor of oncology. “This gave him a unique perspective. He was never able to forget his own mortality. He was acutely aware that he was a beneficiary of advances in medical science, and he was determined to give something back to others.”

Kohrt’s research focused on the idea that the immune system could be trained to recognize and fight cancer. He was the co-principal investigator for many Stanford-based trials exploring whether anticancer antibodies such as rituximab, which was developed in Levy’s lab to treat non-Hodgkin’s lymphoma, could synergize with other antibodies to provide an improved immune response.

He also devised clinical trials to learn whether it is possible to prevent the recurrence of solid tumors, such as cervical or ovarian cancers, by vaccinating a patient with small pieces of cancer-specific proteins to help the immune system immediately attack any remaining cancer cells.

“Holbrook was struck by the potential power of the immune system to treat cancer,” said Levy. “He made some very important discoveries in this field and designed some critical clinical trials which have directly benefited patients.”

Outpouring of emails

In the hours after Kohrt’s death, Sledge and Levy received an outpouring of emails from researchers around the world expressing their grief and sorrow.

“Holbrook was widely known and respected,” said Sledge. “Even senior researchers in the field of medical oncology have commented that they learned a lot from their interactions with him.”

In a 2013 Stanford Medicine magazine profile, Kohrt reflected on his unique situation as both a doctor and a person with a life-threatening disease:

“What it really underscores for me is that, in some parts of your life, things are under your control, and in others they are not. Initially there is a very high level of fear when you realize that the outcome is out of your hands. You have to choose whether you’re going to perseverate on that and feel that fear every day, or if you’re going to hope and move forward.”

Kohrt is survived by his parents, Mary Louise Kidd and Alan Kohrt; siblings Brandon, Barret and Brie Kohrt; stepmother Lois Kohrt; stepsiblings Jennifer Baldwin, Katherine Czapla and Ryan Baldwin; sisters-in-law Christina Chan and Angie Kohrt; nephew, Ceiran Kohrt-Chan; and girlfriend Kendra Cannoy.

A celebration of Kohrt’s life will be held March 11 in Hawley, Pennsylvania. Details about the memorial can be found at http://www.forevermissed.com/holbrook.

A memorial at Stanford will be held at a later date.

In lieu of flowers, donations in Kohrt’s memory may be made to the Holbrook Kidd Kohrt Cancer Immunotherapy Fund at Anticancerfund.org; to a fund at Stanford University being set up to support the training of fellows in medical oncology (contact Ron Levy at levy@stanford.edu); or the Children’s Hospital Foundation (contact Julie Taylor at julie.taylor@erlanger.org).

....so, at the time we did not know that HK would develop a practical preference for shellfish (shrimp)....but, this was an amazing experience with Holbrook and Kendra and her friends in Saratoga....one of so many day trips around the Bay Area!

....this is the last time I saw one of my best friends, Holbrook, alive....right before his birthday in December 2015....I came out from St Louis and we typically hung out in his Ham Yard hotel apartment, mostly working on things....grants, papers, lab projects, etc...he - as always - was tireless...literally...I would have to sleep, but he - in the super-human way that he did - continued to work - literally tirelessly - on one of his many trials, experiments, patents, companies, consultant projects, etc, etc....I had to leave Sunday to go back for clinic, but he wanted to go out Saturday night to go see this particular DJ...he knew music like nobody's business and of course I had not heard of this DJ, but as always knew his selection would be excellent. 

We left his place late, stood in line in the cold London mist...and of course he struck up quick conversation with the London locals - exactly the kind of guy he was....extraordinary and yet as ordinary and relatable as anyone....that was one of his amazing qualities....here was a guy that by all accounts could be as arrogant and stuck up as he wanted to be, and yet he had this connection with people, and never "talked down" to them...that's why his talks were always amazing and people very much connected with them - he made the most complex science understandable and meaningful....a gift very few physician-scientists as bright as he have....

So, despite his chronic knee and new ankle pain, we danced and enjoyed the music and had an amazing time at an amazing show.....took this selfie (in poor light)....I told him I loved him like a brother and missed him...was ready for him to come back to the US and get better....

I left the next morning for the airport.....that was the last time I saw him.

Perhaps we all take life a bit for granted....I think Holbrook had a different view....he lived the *hell* out of life - extracting every moment to its limit - perhaps because of his hemophilia....but, I'd like to think he also just understood life and living...he impacted so many in such a short time...I will miss him horribly and his memory and lust for life will help me and countless others (I'm sure) live without taking life for granted, and help us live perhaps at least a fraction as passionately as he lived.  

http://sanfrancisco.cbslocal.com/2016/03/01/dr-holbrook-kohrt-dedicated-stanford-oncologist-dies-at-38/

STANFORD (CBS/AP) — A 38-year-old Stanford Medicine oncologist died last week of complications from hemophilia after falling ill while vacationing in the Bahamas, university officials said Tuesday.

Dr. Holbrook Kohrt, who sought new ways to arm the immune system to fight cancer, died Wednesday in Miami, Stanford officials said.

Kohrt, an assistant professor of oncology at the university’s School of Medicine, had a life-long struggle with hemophilia, a disorder that prevents blood from clotting properly, Stanford officials said.

“Holbrook knew that his time here on Earth would be short, and he worked tirelessly to accomplish as much as possible,” Dr. George Sledge Jr., a professor and chief of oncology, said in a statement.

“He was an exceptional human being, unparalleled in his brilliance, dedication and persistence. He was passionate about research and making a difference for cancer patients. This is such a loss for his friends, colleagues and the field of medical oncology,” Sledge said.

Kohrt arrived at Stanford as a medical student in 2000 and completed his residency, fellowship and a PhD program at the university, Stanford officials said.

His research focused on the idea that the immune system could be trained to recognize and fight cancer and he devised clinical trials to learn whether vaccinating a patient with small pieces of cancer-specific proteins could help prevent the recurrence of solid tumors, according to the university.

A celebration of Kohrt’s life will be held March 11 in Hawley, Pennsylvania. A memorial at Stanford will be held at a later date.

Obituary featured in The New York Times, March 1, 2016

 http://nyti.ms/1REQzjE

Dr. Holbrook Kohrt, a hemophiliac who transformed his own chronic condition into a personal and public crusade for medical cures, died last Wednesday in Miami. He was 38.

The cause was complications of hemophilia, his brother Brandon said.

“A lot of physicians say that being sick opened their eyes to what it means to be a patient,” Dr. Kohrt told San Francisco magazine in 2014. “For me, that doesn’t really resonate — I’ve had hemophilia my whole life.”

Inspired by his own body’s ability to suppress disease, even as fellow hemophiliacs died from tainted blood transfusions, he pursued a medical career that coupled basic science with a clinical practice.

“It’s difficult to see cancer patients for whom effective therapies don’t yet exist,” he said in an interview with Stanford Medicine magazine in 2009. “So to be able to come back to the lab and work on what I was wishing for a few hours earlier, there can’t be anything more rewarding than that.”

Dr. Kohrt, who was known as Brook, had no family history of hemophilia — a disorder in which blood does not clot normally — but his parents became alarmed shortly after he was born when he developed mysterious bruises and bled profusely after his circumcision.

Child protection workers investigated, wondering whether he was being abused. Doctors discovered that his gene for a clotting protein known as Factor 8 was not functional.

Dr. Kohrt wore a helmet to guard his head against injury until he was 7. He began giving himself infusions about the same time, injecting himself with a lifesaving blood-clotting factor. (His second-grade teacher fainted when he demonstrated the process at show and tell one day, he said.)

Classmates ridiculed him. People with religious objections to transfusions spat at him. “To this day, I’ve never encountered so much bias and irrationally steadfast antagonism about a person doing what he needs to do to stay alive,” Dr. Kohrt said.

When he was 8, he began attending a summer camp specially equipped for hemophiliacs.

“About 80 percent of these kids got H.I.V.,” he told Stanford Medicine in 2013, referring to the human immunodeficiency virus, the virus that causes AIDS. “As a result, there are about 50 percent fewer hemophiliacs alive today than there would have been without H.I.V.”

The camp disbanded after eight years because only he and one other camper were left. (Since then, doctors have found ways to purify donated blood and to engineer the clotting factor genetically without depending on human donors.)

Holbrook Edwin Kidd Kohrt was born in Scranton, Pa., on Dec. 14, 1977, the son of Dr. Alan Kohrt, a pediatrician, and the former Mary Louise Kidd, a nurse. Both parents survive him. Besides his brother Brandon, he is also survived by his sister, Brieanne Kohrt; another brother, Barret; his stepmother, Lois Kohrt; his stepsisters, Jennifer Baldwin and Katherine Czapla; his stepbrother, Ryan Baldwin; and his girlfriend, Kendra Cannoy.

Dr. Kohrt earned a degree in molecular biology from Muhlenberg College in Allentown, Pa., and graduated from Stanford University School of Medicine. At Stanford, he was an assistant professor, conducted research at the Levy Laboratory on Lymphocytes and Lymphoma, and started his own laboratory in 2012 to study immune oncology.

He lived in San Francisco. He was undergoing treatment in the Caribbean last month when he developed an infection and was flown to a Miami hospital, where he died.

He recalled in an interview with The New York Times in 2013 that his immune system had naturally cured him of hepatitis C. “I wondered if there might not be ways to get the immune system to respond to cancer in that same way,” he said. “Today, that’s the focus of my research.”

He was asked whether anything about his condition drove him.

“Oh, yes, but it’s more philosophical than physical,” he replied. “I realized early on that I have to do everything I want to do as soon as possible, because I didn’t know what the future could be.”

I knew Holbrook Kohrt (I liked to call people by their last name and I used to just call him Kohrt) from medical school. We started the same year and struggled through the first year studying hard and learning about medicine. At that time I knew about his hemophilia but not to the extent I do now. Kohrt was always daring and did everything we all did, I never saw him shy away from anything because of his disease. During that first year of medical school he got into a car accident- he was unharmed but his car got dented on the side panel. Shortly after he wanted to sell his car but felt bad about the dent, so he asked me to help him fix it. So there we were in the parking lot of the dorm pounding at the metal, him holding it itches away from where I was pounding! Thinking back I feel so stupid that I allowed him to put himself in such danger, but that was Kohrt nothing was out of reach. We kept in touch through the years but lost touch because we were both busy with life and distance. I last saw him in 2014 when he came to Los Angeles for a vacation and had a wonderful breakfast just the two of us in a cafe by the beach. We talked about his life and all the exciting things he was doing and he seemed very happy. At the end of our breakfast we hugged and he stayed back in the cafe working on a grant. He was always working and now I understand why. Thank you for being a good friend and so giving to our society. I will miss you dearly but you will always be alive in my brain and in the wonderful work you leave behind. Edgar Chavez

I was first introduced to Holbrook by a common colleague in the fall of 2011, when I was in the process of forming Jounce therapeutics, a new start-up to be focused in cancer immunotherapy.  We had already identified the primary academic founders, so I was in the process of trying to meet bright emerging stars in the field to potentially get involved in the company.  Almost no one made the initial impression that Holbrook, made, I was so impressed with the scientific creativity that was used to learn how to use a drug that failed in the clinic in a more productive way.  Our company was funded in early 2013 and I had kept in contact w Holbrook though the phone and common meetings we would attend.  I knew he had to be involved in Jounce.  Holbrook became involved in Jounce in 2014 as our main clinical advisor, a potential prelude to potentially joining the company one day. 

An interesting aside was, in April of 2014, we were supposed to have a coffee on the 1st day of the annual AACR meeting when I had to cancel as I ended up in an emergency room with a fractured pelvis.  When, after my surgery and rehab we finally met up again did I learn he was healing from a fractured leg, but only then fully appreciated all the details of his personal condition. I found us becoming closer over the course of this time, only difference was it was easier for m to heal.  I learned about the complications he was having from the anti-factor VIII antibodies and how scared I was for his health and survival.  What amazed me about Holbrook is that he took on his own condition with the same tenacity that he showed in his own work; was more focused on his quest to help others and many of where hoping that there would be some amazing case study to talk about. 

I would say his passing does not make his story any less amazing; he often stated that he felt lucky to have been around as long as he was, what he did to keep himself going while continuing to be productive during the last year of his life was heroic and inspirational on so many levels.  Jounce will have its first drug in the clinic later this year, and he did put his stamp on the design of that emerging clinical study. 

He put his stamp on so many things, I feel that I am a better person having known him and all I can do now to honor his legacy is keep on going with the same tenacity that he showed, no matter what is going on. 

This is what I owe you Brook; hope I am up to the task.

 You will be forever missed and forever in our hearts

This is a photo that my wife Stephanie took of Holbrook, Josh Brody, and I during a trial in 2011, just after Holbrook had given me an injection.  I shared it with him last year, after he told me how dire his health had become, and it will always be one way that I remember him.  I’ll also remember the power of his presence when we first met him, the time he slipped the happy news that he was now a faculty member into the middle of a sentence, him scribbling notes about future treatment possibilities on the paper covering of the exam table, and his moving email messages during the last year.  It was a gift to know him.

https://m.youtube.com/watch?v=zWu_eJTlngs

What happens when a physician becomes a patient – forced to view the health-care community through a different lens? Some physicians may have difficulty relinquishing control of their treatment to the hands of another, while others gain a new appreciation for the patient experience.

For some physicians, though, the experience of being a patient begins well before they have completed medical school, motivating them to study their particular disease. ASH Clinical News recently spoke with three hematologist/oncologists who have a unique perspective on practicing medicine and conducting research: Each is both a physician and a patient with a hematologic disorder.

Holbrook Kohrt, MD, PhD

Holbrook Kohrt, MD, PhD, is an assistant professor of medicine at Stanford Cancer Institute. He was diagnosed with severe hemophilia as an infant and his condition has been a part of his day-to-day life for the last 38 years, influencing his decision to become a physician.

ASH Clinical News: You were diagnosed with hemophilia at a young age. When and how were you diagnosed?

Holbrook Kohrt, MD, PhD: For most hemophiliacs, the diagnosis occurs after having a bleeding episode as a very young child. For me, at about two months old, I was having multiple episodes of bruising and joint bleeding, and they actually thought that my mother was abusing me.

My hemophilia diagnosis was made when doctors discovered that I had the spontaneous mutation, an inversion in the Factor VIII gene. There were no risk factors and no reason to suspect that I had hemophilia – hence, the allegations of some type of physical abuse were not viewed as absolutely crazy. Unfortunately, that process took a toll on my mother.

How did your diagnosis affect your childhood and the rest of your family?

The diagnosis of any chronic medical condition, where there is need for additional attention and focus, creates a complex environment for both a child and his or her relationship with siblings and parents. My father, as a pediatrician, felt like he should have been able to make the diagnosis earlier. He was also out there trying to help heal kids while his own child was home with frequent joint bleeds; I think he wanted to be able to take away the pain of the joint bleeds and to be able to help me more, as a physician should.

My mother and I spent an incredible amount of time together. The hospital I went to was three hours away, so we would have six-hour day trips in the car to visit the hematologist. That was a lot of bonding time, and we have remained close ever since.

Growing up, my three siblings probably felt a little bit slighted because they weren’t getting as much attention – like when I was hospitalized with hepatitis C after a blood transfusion and the joint destruction caused by so many repeated joint bleeds.

Now, though, we are incredibly close. It is impossible to get a word in edgewise when we get together. In the end, it has been something that brought us together and strengthened our bonds.

What initially prompted you to become a doctor? What field did you envision going into?

Since my dad was a pediatrician, I spent time in his clinic on the weekends. I always thought I would end up in some form of medicine. It was my dream as a kid. I considered going into pediatrics because that’s what my dad did, and he made it seem like that was the only form of medicine. Unfortunately – or fortunately – he did not get his wish. When I was in medical school, I realized the path I wanted to go down was hematology/oncology.

Where does your health stand today? What is your current treatment regimen?

I have severe hemophilia and have received most standard therapies, but I recently developed an inhibitor to Factor VIII. I have multiple treatment options, but, unfortunately, none is working.

I am on an experimental therapy, ACE910, that is only available through a very specific law in Belgium. The “urgent case law” allows a physician there to write a prescription for an investigational drug still in development. That is how I get my care today, but it means I have to go to Belgium once a week to receive treatment. I have been living outside of the United States since May 2015 and dealing with my inhibitor since August 2014. It has been a year and a half, and it has been challenging.

How would you say your ongoing experience with hemophilia has shaped you as a physician?

As a physician and a patient, one always remembers the power and the capacity to be trusted. I think that patients come in the door and trust us immediately; I came into my own physician’s room and I trusted him immediately. We have to respect that because it is a type of trust that is given to us completely and blindly.

It helps me maintain perspective that what I do has great weight in patients’ lives. I need to put in 150 percent because what I do will have a clear impact.

It is amazing how children develop relationships with a specific person who personifies the role of “doctor.” That was true in my case. My first hematologist was African American, and my second was Caucasian. I told my second hematologist, who became chief of staff at the Children’s Hospital of Philadelphia, that he wasn’t allowed to be my hematologist because he wasn’t black. I think this is true for adults, too. We presume that those people are out there as our best advocates. Therefore, we, as doctors, should always treat our job with that much respect.

As seen in Stanford Medicine Special Report by Krista Conger

http://sm.stanford.edu/archive/stanmed/2013spring/article7.html

Not many second-graders manage to clear the school with a single show-and-tell project. But 8-year-old Holbrook Kohrt had a knockout demonstration. Literally. 

Kohrt, a hemophiliac, was showing his class how he had learned to give himself lifesaving injections of a blood-clotting factor that his body was unable to make naturally. Engrossed in the performance of what was for him a routine occurrence, he was startled by the reaction of others in the room. 

“Halfway through, my teacher passed out, as did many of the other students,” he says. Because his rural Pennsylvania school was both remote and minimally staffed, the entire school was dismissed for the afternoon. 

Kohrt, now an assistant professor of medicine at Stanford with an MD and a PhD to his name, is keenly aware of the importance of healthy blood — mostly because he doesn’t have any. He tells the show-and-tell story in a wry tone, acknowledging the inherent comedy in the scene. But it’s a rare light-hearted moment in a childhood that was, by any measure, harrowing. As a child in the early ’80s, he, like other hemophiliacs, was forced to rely on transfusions from apparently healthy donors to prevent bleeding to death from even minor injuries. But these treatments carried a significant risk of lethal infection.

“From when I was about 10 until I was about 15 or 16, I was very aware that my risk of contracting HIV and other pathogens increased with each transfusion,” recalls Kohrt. “I was also very aware, though, that without the transfusion, I would die. I watched some of my best friends become infected in this way, and saw them go through the process of dying from AIDS and the stigma the disease carried at that time. The whole experience was very shaping.”

All told, about 80 percent of people with severe hemophilia during the early 1980s were infected with HIV, according to the National Hemophilia Foundation. Many of these people died as a result. In 1998, the federal government set up a system of restitution through the Ricky Ray Hemophilia Relief Fund Act for those affected by the slow or inadequate screening of the nation’s blood supply.

Kohrt’s story is a scrapbook of how treatments for a blood disease have gone from being nearly universally fatal to treatable with routine, safe injections of a recombinant form of the clotting factor. Recent advances in gene therapy, including an ongoing clinical trial at Stanford and elsewhere, have researchers cautiously optimistic that it may one day be possible to provide a permanent cure for patients like Kohrt.

It’s also what’s led Kohrt to a career in hematology and oncology, and a rare dual understanding of what it’s like to be both a bedridden patient and a bedside caregiver. Kohrt has parlayed his experience into a burgeoning career as a physician-scientist with an intensely personal mission: to help patients with life-threatening conditions in any way he can.

 “Holbrook has the unique ability to see clinical problems from the patient’s perspective as well as a clinician’s,” says Ronald Levy, MD, director of Stanford’s lymphoma program with whom Kohrt has worked to design new clinical trials for patients with that blood cancer. “He’s acutely aware that he himself has been the beneficiary of this type of clinical research, and he’s eager to bring similar advances to other patients who are suffering.”

Hemophilia is firmly anchored in the annals of human history — a fact for which we can thank the British royal family. Queen Victoria passed the mutation that causes the blood disorder, which is carried on the X chromosome, to at least three of her eight children. Those children went on to intermarry with the royal and notable families of Europe and spread the disorder to many descendants, including Victoria’s great-grandson Alexei Nikolaevich Romanov.

Hemophilia is a recessive trait, meaning that female carriers of just one defective copy are asymptomatic carriers of the disorder. These women have a 50 percent chance of passing the mutated gene to their children; boys like Kohrt who receive this copy will display symptoms because they have only one X chromosome. There are two main types of hemophilia, categorized by the gene that’s disrupted, and the disorder can occur in varying degrees of severity. Kohrt has a severe form of what’s known as hemophilia A; his gene for a clotting protein known as Factor 8 is completely non-functional.

But Kohrt’s parents, Alan Kohrt, a pediatrician, and MaryLou Kidd, a nurse, knew nothing of Brook’s (as they call him) genetic destiny when he was born in 1977. Kohrt’s mutated Factor 8 gene had occurred spontaneously; they had no family history of hemophilia. So they were alarmed when their newborn son began to develop large, unexplained bruises all over his body and bled profusely after his circumcision.

“We experienced the same kind of shock and denial when he was diagnosed that all parents feel: This can’t be happening to our child,” recalls Alan Kohrt, MD, who now chairs the department of pediatrics at the University of Tennessee College of Medicine in Chattanooga and is the senior medical director of the Children’s Hospital at Erlanger. At the time, the family was living in a remote area of Paupack Township in Pennsylvania, where Alan Kohrt was working as part of his enrollment in the National Health Service Corps.

“The most difficult thing to accept was that Brook didn’t just have hemophilia, he had severe hemophilia,” says the elder Kohrt. “This changed everything for our family, from planning where to go to vacation to learning how to deal with him as an infant crying in the night. Was he hungry, or was there something more serious, like a bleed, happening? And things became even more challenging when Brook became a toddler and started crawling and falling.”

Until relatively recently, most people with severe hemophilia died young — sometimes as infants. The best treatment was preventive, and patients sought to avoid any injury or trauma that could cause life-threatening internal or cerebral bleeds. Many sufferers experience spontaneous bleeding into the joints that can cause debilitating pain, swelling and lasting damage. Kohrt wore a helmet to protect himself from injury until he was about 7 years old, and frequently used a splint after a joint bleed. He quickly became a spokesperson for the condition.

“Brook was always a trouper,” says Alan Kohrt. “He’d explain to the other kindergartners about his helmet and his condition. After he was born, his mother went to work for the local branch of the Red Cross and in middle school Brook was often featured in ads explaining the benefit of donating blood.” At the time, blood, or blood components, from healthy people was the only source of the clotting factors missing in hemophilia patients.

In 1840, physicians at St. George’s Hospital Medical School performed the first successful whole-blood transfusion on a person with hemophilia. Whole, healthy blood contains minute amounts of the clotting factors made by the liver of the unaffected donor. This type of transfusion can be slow, dangerous and painful, however, even if the blood types of the donor and recipient are carefully matched. In the late 1950s, physicians began to use fresh, frozen blood plasma — the pale yellow liquid that remains behind after blood cells are removed by centrifugation — which eliminated many of the unpleasant side effects in the recipient. But neither whole blood nor plasma contains a concentration of clotting factors sufficient to completely prevent bleeding, and physicians had to transfuse large volumes for any effect.

In 1977, however, there were other options for Kohrt and his family: a powder called cryoprecipitate, which is collected from the plasma of between one and four blood donors, or purified clotting factor isolated in large quantities from the pooled plasma of hundreds or thousands of donors.

Cryoprecipitate was discovered accidentally in 1964 when Stanford researcher Judith Pool, PhD, tested the composition of the residue left behind in a bag of thawed plasma. It had a high concentration of Factor 8, and it allowed physicians to treat patients with much smaller volumes. In the late 1960s, physicians and researchers had learned to isolate from large batches of plasma purified clotting factors, which were even more convenient to use.

These advances freed for the first time patients and their family members to administer appropriate treatment at home.

“Before this, or if a parent didn’t know how to transfuse their child, the family would have to go into the hospital or clinic as often as every other day,” says Kohrt. “But when I was about 6 years old, my parents taught me how to give myself infusions. Other families in our small town might have meat or groceries delivered to their homes; we had blood-delivery trucks pulling up filled with giant coolers of cryoprecipitate.”

His parents’ choice of cryoprecipitate over the purified factors was deliberate.

“We were doing everything we could to make sure that the product Brook received was the safest possible choice,” says Alan Kohrt. “We stayed with cryoprecipitate for as long as possible, in part because that comes from one donor, or a limited number of donors. And we treated him only when he had a bleed, instead of giving it on a regular basis.”

His parents would keep the cryoprecipitate as a powder in the freezer until Kohrt experienced a bleed. As an infant, Kohrt’s parents injected him with about 10 to 30 milliliters of the cryoprecipitate-containing solution — a process that could take as long as an hour. As he grew, the volume of the injection grew to around 100 milliliters and Kohrt began treating himself. Eventually Kohrt, who by then was experiencing chronic joint pain and problems, had to accept regular, prophylactic therapy to head off bleeds before they occurred.

“Basically the treatment involved taking in a lot of unpurified blood product,” says Kohrt. He relied on cryoprecipitate, which contained multiple blood components other than the Factor 8 clotting factor, and as a result eventually triggered severe allergies. But when he switched to the purified, concentrated form of the clotting factor, the risk of infection was much higher because it was purified from the blood of many more people.

Although the cryoprecipitate and purified clotting factor were lifesaving for Kohrt and others with hemophilia, both carried an unavoidable risk of exposure to blood-borne diseases. By the early 1980s it was clear that hemophilia patients across the nation were contracting hepatitis C and HIV from the pooled plasma, and Kohrt and his parents knew they were playing a deadly game of roulette.

“There was always that apprehension,” says Alan Kohrt. “We never knew if that day’s treatment was going to be contaminated. But we tried to give him as normal a childhood as possible. I don’t know how much of how we all handled it was denial, and how much was us simply praying he didn’t get it.”

The uncertainty lasted until the mid-1980s, when physicians began to heat the plasma to kill viral contaminants. In March of 1985, however, blood banks across the country implemented new screening techniques that vastly improved the safety of the nation’s blood supply. [To learn about Stanford’s pioneering role, see page 18.] In 1984 researchers cloned the gene for Factor 8, and in 1992, the Food and Drug Administration approved the use of what’s called a recombinant form of Factor 8. This recombinant form is made by specially engineered hamster cells under laboratory conditions, and eliminates any exposure to the blood of other people.

These changes didn’t come soon enough for many of Kohrt’s friends, however. As an adolescent, he attended a yearly, weeklong summer camp outside of Philadelphia for children with hemophilia. The camp had hundreds of attendees, and Kohrt made many close friends by teaching his peers how to perform their own transfusions, practicing on oranges and other thick-skinned fruits. As the years passed, however, attendance dwindled.

“About 80 percent of these kids got HIV,” says Kohrt. “As a result, there are about 50 percent fewer hemophiliacs alive today than there would have been without HIV. That was a horrible time. It was incredibly difficult at a young age to see all those people who were not as lucky as I was.”

Kohrt switched to the recombinant form of Factor 8 as soon as possible, but he didn’t escape those early years of uncertainty unscathed. When he was 13 he contracted a severe case of hepatitis C and was hospitalized for six weeks with nearly full liver failure. His immune response rallied and eradicated the virus — an outcome that happens in only about 20 percent of patients with active hepatitis C.

Kohrt’s experiences as a patient with hepatitis sparked an interest into how clinicians might jumpstart a patient’s immune system to fight other diseases such as cancer and fueled his entrance into medical school, then research. Today Kohrt, together with lymphoma program director Levy, is focused on several ongoing clinical trials for patients with lymphoma. In 1997 the FDA approved the use of an antibody called rituximab developed in Levy’s lab for these patients. Now Levy, a professor of medicine, and Kohrt are designing ways to help the antibody work even better.

“Essentially, we’re working on developing a second antibody that, in combination with rituximab, can help the immune system respond more vigorously to the cancer,” says Levy. “In animals the results are very synergistic and quite remarkable. We hope that it will do as well in people.”

Not one to do things halfway, Kohrt crafted his own PhD program focused on clinical trial design, and the treatment is now being tested in several small groups of patients.

“I feel like my experiences have prepared me to provide some level of empathy for my patients who are newly diagnosed with cancer,” says Kohrt. “I can really feel how scared they can be because I remember what it was like to be in that situation. What I’m doing now, all of it, is fueled by my personal background with hemophilia. I want to give the benefit of this type of translational research to other people. That is the fuel to my fire and my inspiration. Without recombinant Factor 8, I would likely not be here today.”

“Learning how you can help other people is the best gift you can receive in life,” says Alan Kohrt. “That’s the one thing that’s going to give you the most back. Brook has been able to focus on this idea and say, ‘This is what I want to do.’ He’s always been that kind of person, and I think he was truly meant to do the work that he is doing.”

It’s not known exactly why Kohrt remained uninfected. Research conducted by the Centers for Disease Control on him and others who escaped HIV didn’t turn up any molecular cause, like an underlying resistance to the virus, for his good fortune.

“Essentially I just got really, really lucky,” says Kohrt. “What it really underscores for me is that, in some parts of your life, things are under your control, and in others they are not. Initially there is a very high level of fear when you realize that the outcome is out of your hands. You have to choose whether you’re going to perseverate on that and feel that fear every day, or if you’re going to hope and move forward.”

As seen in San Francisco Magazine, Dec. 14, 2014, by Elise Craig

http://www.modernluxury.com/san-francisco/story/when-doctors-need-doctors-after-dodging-death-sentence-look

A lot of physicians say that being sick opened their eyes to what it means to be a patient. For me, that doesn’t really resonate—I’ve had hemophilia my whole life. I had a lot of bleeding episodes as a newborn, and the doctors couldn’t figure out why. Child Protective Services came to my house and evaluated my mother to make sure that I wasn’t being abused. It took almost a month to realize that I had a bleeding disorder, and a month more to understand what it was. It wasn’t until I was at Children’s Hospital of Philadelphia that I was finally diagnosed with hemophilia. My parents were absolutely shocked—it came from a genetic mutation.

I grew up next door to Jehovah’s Witnesses who actually believed that people who get transfusions are going to hell. They ridiculed me on the bus, and they spat in our faces when we opened the front door. I was between three and nine years old when these people were really accosting my family, and it was one of the most directly confrontational experiences that I’ve ever had. To this day, I’ve never encountered so much bias and irrationally steadfast antagonism about a person doing what he needs to do to stay alive.

From the time I was about six until my young teens, I went to a camp outside Philadelphia called Hart Scout Camp. Hemophiliacs took over a portion of the camp for part of the summer to experience what it was like to be with other people like us. There’s nothing more welcoming than seeing other people who have the same chronic illness you do. Camp gave me the sense that I was normal.

But my camp years were at the height of the HIV epidemic, and every year, fewer and fewer of us came back. Back then, every time that you got clotting factor, you got exposed to thousands of people’s blood at one moment in time. Of kids born my year with severe hemophilia, 98 to 99 percent got HIV or AIDS. At camp, we would talk about our symptoms—swollen joints, frequent colds—almost humorously, because that’s what you do. But when we’d come back the next year, there were questions about who hadn’t showed up, what were the kids who did actually sick with, and how sick were they? Then the question became, who had died?

When I came back as a teen, we began to see that some of these symptoms were not symptoms of hemophilia, but of HIV and AIDS. When I was a mid-teen, the camp was stopped entirely because too few of us were coming back. We were talking about hundreds of kids initially. By the end, it was just a few kids. That was striking.

The infection rate was so high that they looked at the rest of us to see if we had genetic mutations for resistance. The Centers for Disease Control did a study of people my age with severe hemophilia, and it found that a bunch of us had mutations that provide natural resistance to HIV from an important receptor of the virus called CCR5. That’s why a subset was able to escape. I was part of the CDC study, but don’t have a mutation. I guess I just got lucky.

As I was growing up and deciding what to do when I was going to college, the impact of being a physician was very clear. The connection that I had to my hematologist was as close a connection as I had to my siblings and my parents. My doctors were integral to my day-to-day life, helping me to be optimistic through really challenging periods. I knew at a young age that there’s something really unique about bonding with patients. I wanted that same opportunity to make a big impact on people’s lives. I was also fascinated by how our bodies work: I wondered why I didn’t get HIV, and why, when I got hepatitis C, my body was able to fight it off. The intricacies between the immune system and the virus were intriguing, and they led to my interest in the immune system and cancer, which is what my career focuses on now. I saw two patients today, and I got a hug from each of them. How many jobs are there where the people you interact with, your customers, hug you because you play such a meaningful role in their lives and, hopefully, they play an equally meaningful role in yours? That’s what I love about being a physician.

As seen in the New York Times, Dec. 23, 2013, by Claudia Dreifus

http://www.nytimes.com/2013/12/24/science/a-doctors-intimate-view-of-hemophilia.html

Dr. Holbrook Kohrt is a physician and researcher who has spent a lifetime as a patient. A 36-year-old hematologist at the Stanford University School of Medicine, he has an extreme form of hemophilia, the bleeding disease. We spoke about his life and work for two hours in person, and later by telephone. An edited and condensed version of the conversations follows. 

Hemophilia is thought to be hereditary. Do other members of your family have it?

No. None. When I was born in 1977, my parents didn’t even know I had it. After circumcision, I bled profusely. And then, during the first month of life, I kept bleeding. Though my father was a pediatrician and my mother a nurse, they didn’t even consider hemophilia. 

They took me to the hospital, where the doctors thought my mother was abusing me — I had all these unexplained bruises. After some testing, it was determined that I had a very unusual type of hemophilia that comes from a random mutation. 

Once that was known, my parents became centered on taking care of a child with severe hemophilia. So I grew up in a room that was padded so I wouldn’t bleed to death if I fell. I wore a helmet every day. There were frequent trips to the children’s hospital for emergencies, three hours from where we lived, in Lake Wallenpaupack, Pa.

Was it possible to have a normal childhood under those circumstances? 

I wouldn’t say so. We lived in a small town. Many people there did not understand about hemophilia. 

To stay alive, I had to have transfusions of a blood product — clotting factor — every other day. We had neighbors who were members of a religion that opposed transfusions. People from that family would ring our doorbell and scream that we were going to hell. 

On the school bus, the others made fun of me. This got even worse during my adolescence because people first began reading about AIDS. To uninformed people, AIDS and hemophilia were the same thing. 

To make the situation even worse, large numbers of hemophiliacs developed H.I.V. At the beginning of the H.I.V. epidemic, the blood banks didn’t test their donors for the virus. To stay alive, hemophiliacs often require transfusions of the clotting factor. It’s a protein that our bodies can’t make naturally, and it’s made up from the blood of hundreds, perhaps thousands of donors. Well, if one of those donors had H.I.V., it could be transmitted to anyone who received the blood product. In those years, of the severe hemophiliacs, 95 percent died after contracting H.I.V. from transfusions.

I remember, from the time I was 8 years old, I went to this special summer camp for hemophiliac children. The first year I attended, there were about 200 campers. Eight years later, they stopped having the camp altogether because there were just two of us left.

I think that there’s something very strong about the fact that I was a teenager at the time when all this was happening. When young kids encounter death, you don’t understand the full magnitude of it. You experience it, but then you feel like life goes on. 

Why didn’t you contract H.I.V. like the others? 

I was lucky. I did, at the age of 13, get hepatitis C, from contaminated blood. I was in the hospital for two months. And then something truly fortunate occurred. I had what’s called a “full antibody response,” which means that my immune system naturally cleared the infection. 

Today, happily, the blood products hemophiliacs take are safer. Scientists have figured out a way to produce an engineered version of the clotting factor. That means that we don’t have to go to hundreds of human donors for blood anymore. They take the protein we need, insert it into the ovary of a tiny hamster and make the clotting factor from that.

Did your childhood experiences lead you to become a hematologist? 

Oh, absolutely. In my childhood, it was doctors who I related to more than my peers. 

The thing that really attracted me, though, was seeing translational medicine happen in my lifetime. By the time I applied to medical school in 2000, the H.I.V. epidemic had become a chronic disease in the developed world. Breakthroughs in biochemistry promised the same for hemophilia. I wanted to help with that. 

As you recall, I had this experience where my own immune system had naturally cleared a hepatitis C infection. I wondered if there might not be ways to get the immune system to respond to cancer in that same way. Today, that’s the focus of my research.

Tell us about your research. 

A few years ago, I joined the Stanford laboratory of Ron Levy, who developed the antilymphoma chemotherapy Rituxan. My focus there has been to try to get it to work better against non-Hodgkin’s lymphoma by adding Rituxan to another antibody in the hope of finding a combination that attacks the cancer. 

The experiment has been to inject mice with lymphoma, go down a couple days later, give the mice Rituxan, and then a couple days later, give them whatever molecule I choose. About four years ago we did this, and we had a whole cage full of mice where the tumor completely melted away.

Recently, we gave that combination to a human patient. And now, almost a year later, she has no evidence of the lymphoma whatsoever. Of course, one patient isn’t enough to make for a clinical trial. So now we are going for full-scale trials to show that it is not only effective for lymphoma but, hopefully, for other cancers, too.

You’ve been doing a clinical trial in Cuba. Is that for the same therapy?

No. In Cuba, we’ve been taking little portions of cancer cells — the peptides — and vaccinating patients against them. Actually, we’ve taken this idea and applied it to cervical cancer in Cuba, ovarian cancer in Australia, leukemia in Europe, and at Stanford. 

Our goal is to ultimately use this approach to teach transplanted bone marrow what the cancer looks like so when cancer attempts to come back, the immune system is smart enough to recognize and attack it. 

Why study this in Cuba?

There is a large population of underserved patients with cervical cancer there. They had doctors there who wanted to work with us. Right now, we’re in Phase 1 of trials there, which means that we’re testing for safety and the immune response. Patients who already have cancer receive the vaccine, and we’ll see if the immune system responds and mobilizes. 

Is there anything about your own condition that pushes you forward?

Oh, yes, but it’s more philosophical than physical. I realized early on that I have to do everything I want to do as soon as possible because I didn’t know what the future could be. That’s been useful in terms of the research and the science. I have the stamina and the commitment to keep trying things. 

It’s not been so good in terms of personal relationships. I’ve been married twice. But that knowledge forces me to take the time I have to give the maximum to science and to my patients. Research requires great tenacity. When you’ve had a serious illness since infancy, you know to make the most of every single day.