Listen to Geoff’s narration of this blog

 

This is a wrenching, disturbing blog. It’s putatively about the war on cancer, but it’s really about medicine and all the weirdnesses that goes into fighting a disease. You might think that in cancer – that deadliest of foes – egos would take a second seat, but no – not at all.

To provide some relief – the story does end well – but on the way to ending well, we get a good look at the underbelly of what goes on in the medical research and treatment fields at major institutions like the National Institutes of Health and major treatment centers.

The sausage making is not pretty, but it can help us understand why diseases like chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), Lyme Disease, and even long COVID are in the fix they are in – and how they can get out of it.

The blog is on “The Death of Cancer: After Fifty Years on the Front Lines of Medicine, a Pioneering Oncologist Reveals Why the War on Cancer Is Winnable–and How We Can Get There“ by Vincent DeVita, a former leader of the National Cancer Institute, the Chief Physician at the Sloan-Kettering Cancer Center and the leader of the Yale Cancer Center.

There from the beginning of the federal fight against cancer, DeVita has seen it all and he doesn’t pull any punches. In fact, he was encouraged by his colleagues NOT to write this book. The public, his colleagues said, don’t need to know. DeVita thought it did and it’s a shocker.

The book is instructive for diseases like ME/CFS, FM, post-treatment Lyme Disease and long COVID because cancer as a field of study – particularly the chemotherapeutic part of it, which DeVita played a prominent role in – had to battle against hidebound beliefs and outdated treatment approaches.

DeVita showed, though, that however bad things got, the curve ultimately did bend upwards. Even in that most dreaded of diseases – where making a mistake meant death for the patients – there was plenty of pettiness to go around. The book is a good lesson for anyone interested in how medical research and treatment work. In the foreword, DeVita cited something James Watson wrote:

“Science seldom proceeds in the straightforward logical manner imagined by outsiders. Instead, its steps forward (and sometimes backward) are often very human events in which personalities and cultural traditions play major roles.”

As we’ll see, personalities and traditions will play a huge role in the fight against cancer.

The Death of Cancer, by Vincent DeVita

DeVita got involved in cancer in 1963 when the only options were surgery and radiotherapy. Things weren’t going so well. It was a brutal time to have cancer. The most prominent treatment for breast cancer – called the Halsted procedure – removed the breast, the lymph nodes associated with it, and all the muscles covering the chest wall.

Head and neck cancer surgeons would at times remove neck muscles, the jawbone, and even the tongue at leaving patients horribly disfigured. Cervical cancer could call for the removal of a woman’s entire pelvis leaving her with a permanent colostomy bag.

Radiotherapy – the use of radiation to kill cancer cells – went a similar route as doctors prescribed heavier and wider toxic radiation treatments in an attempt to cure their patients.

In the end the surgeons and radiotherapists had it backwards. The problem wasn’t that the cancer had spread to the surrounding tissues. The problem was that as soon as it left its original site it was traveling through the lymph nodes and blood and getting let loose in the body. Those big extensive surgeries weren’t doing any good.

That realization led to the development of chemotherapy which used chemicals to track down and eliminate those cells. Chemotherapy was particularly rough in those days but without chemotherapy, even cancer patients who had been successfully operated on or had radiotherapy were doomed: their cancer was destined to reappear in another organ.

The ever-present possibility of a cancer reoccurrence made the idea of a complete remission anathema in the field.

MOPP Gets Whacked

Skip forward to the young oncologist named Vincent DeVita trembling with excitement as he presented the first evidence that a new combination chemotherapy protocol called MOPP was producing “complete remissions” in Hodgkin’s cancer patients.

DeVita excitement quickly waned when he was attacked by Karnovsky – a leader in the oncology field – because “complete remissions were impossible”. Once the alpha male – Karnovsky – got on DeVita’s case, the pack followed suit: a potentially major breakthrough in the cancer field was ignored and the conference went on without a beat.

DeVita and colleagues put their heads down and pumped out another study. Four years later, he returned to announce that the new protocol had produced complete remissions in 80% of the patients.

DeVita was told again and again, though, that his protocol didn’t work. He found out why when he gave a talk at one of the preeminent cancer centers of the day – Memorial Sloan Kettering.

Told by leading oncologists of the day that his data must be wrong, DeVita questioned them. In a remarkable case of institutional arrogance, it turned out that the mighty oncologists at Sloan Kettering weren’t using his carefully worked out protocol at all – they’d decided they knew better. They’d substituted drugs that had originated at Sloan Kettering for parts of his protocol, had cut the dose of one drug in half because it made their patients nauseous, and changed the timing of the drugs given.

The same thing happened at Stanford where, instead of using body size to determine the dose of a toxic drug called vincristine – as the protocol called for – doctors simply capped the dose at 2mg. DeVita saw this happen so many times he began to wonder how many oncologists were reading the paper.

(Workwell got a similar response when they published results of their two-day exercise tests in ME/CFS: your data, they were told, by other exercise physiologists, must be wrong.)

The good news is the cancer field ultimately did come round and Hodgkin’s lymphoma is considered one of the most treatable of all cancers. The MOPP protocol developed by DeVita and colleagues is no longer the standard of care but is still used in some cases. Even in severe cases, the five-year survival rate of Hodgkin’s Lymphoma is 85%.

Adjuvant Chemotherapy Gets the Cold Shoulder

The next step was something called “adjuvant chemotherapy” which involved treating patients who appeared to be free of cancer with chemotherapy. Adjuvant chemotherapy was appealing because patients who appeared free of cancer after surgery or radiation often came down with it later.

DeVita ran into a wall again when he tried to recruit patients for their trials. The major cancer centers – which were dominated by surgeons – refused to participate in trials. Never mind that many of their patients would later die of the cancer, they appeared to be cancer-free at the time.

Unable to get the study done in the U.S., DeVita had to go to Europe to get it done. It worked and adjuvant chemotherapy (and other adjuvant treatments) are now considered standard care for many cancers.

Bernie Fisher’s Bad News

Even the medical journals got involved in the turf battles. DeVita recalled how a study by a pioneering cancer researcher named Bernie Fisher got hung up in the New England Journal of Medicine for almost a year. The study examined the difference in the outcomes for mastectomy (often the full removal of the breast) and lumpectomy (the removal of the tumor and the area around it).

The study was an uphill battle from the beginning. As with the adjuvant chemotherapy study, it had difficulty getting off the ground because it had trouble finding surgeons who would participate.

By the time the study finished its findings – no difference in survival rates between lumpectomies and mastectomies – meant that many women could be spared the total removal of their breasts, their lymph nodes, and their chest muscles.

That might have been good news for women, but it was not for the surgeons who dominated the cancer field. The study had been sent out to two big-name surgeons – who unilaterally rejected it – causing it to be sent out to others for review. The holdup lasted so long that DeVita published the findings in the NCI’s Clinical Alerts section to get them out as quickly as possible before the study was published.

When the study was finally published years later, it changed how breast cancer surgery was done. DeVita blamed economics for the holdup. The arguments against the approach (“we’ve been doing it this way for 75 years”; “it needs more study”) were so specious that DeVita believed money had to be behind it. Surgeons made 90% of their money from doing extensive breast surgeries and didn’t want that to stop.

When it became clear that radiation therapy wasn’t always warranted, radiotherapists revolted and began to refuse to cooperate in large studies unless radiation therapy – whether it was needed or not – was included.

Fisher was ultimately called a “a medical hero” and an “iconoclastic figure” who brought about “far reaching changes…in the understanding of cancer and its treatment”. He was awarded the Albert Lasker Award for Clinical Medical Research in 1985 “for his pioneering studies that have led to a dramatic improvement in survival and in the quality of life for women with breast cancer.”

Personalities Matter: Mary Lasker and the National Cancer Act of 1971

Personalities matter. Strong personalities like DeVita, DeVita’s mentor Emil Freireich, and Mary Lasker survived vicious attacks from within the medical field but ultimately prevailed. Freireich, the originator of the combination chemotherapy approach that is now standard in the field “was chastised, ridiculed, questioned on the veracity of his publications and called a murderer”.

DeVita recalled that his associates “had been warned by their professors not to get too close to Freireich who felt that [the NCI] was a good place to go to stay out of Vietnam but stay away from Freireich.” Freireich came close to being fired three times while at the National Cancer Institute (NCI) but survived because he had the support of upper management. He went on to become one of the seminal leaders of the field.

Mary Lasker was the wife of Albert Lasker, an advertising executive whose firm’s ironically written ads “L.S.M.F.T.—Lucky Strike Means Fine Tobacco” promoted smoking for women. Together, they created the Lasker Foundation in 1942 and the Lasker Award – which, over time, became second only to the Nobel Prize in prestige.

After the Laskers failed to get Eisenhower’s national health insurance bill passed, they focused on research and transformed the “sleepy” “American Society for the Control of Cancer” into American Cancer City. They played a major role in vastly increasing funding for the National Institutes of Health, but Mary Lasker’s major focus, though, was in cancer, where she was the brainchild of the National Cancer Act of 1971.

Ironically, she wanted to get the National Cancer Institute (NCI) as far away from the NIH as possible. Lasker believed the NIH was too focused on basic research and not enough on research that benefited patients.

To that end, Lasker was able to isolate the NCI as much as possible. Today, the NCI is funded not from within the NIH but by Congressional appropriations. The NCI’s leader is appointed by the President – not the NIH. The NCI runs its own clinical trials, funds over 70 cancer centers, has a physician training program, and besides doing basic research, awards contracts which it gives to companies to provide specific results.

One area Lasker failed in, though, was to get the NCI to create Cancer Centers outside of the university setting. Lasker believed the universities were too focused on producing basic research and shied away from the clinical research that directly helped patients. She turned out to be right.

Turf Battles at the National Cancer Institute

The earlier iterations of the National Cancer Institute where DeVita and colleagues had made their discoveries were a mess. The so-called “Division of Cancer Treatment” only included chemotherapy. The two other main approaches to cancer treatment – surgery and radiation – were in other departments – and they wanted it to stay that way.

Despite the fact that it was becoming clear that no one approach worked best and that treatments worked best when used together, DeVita describes departments more focused on defending their turf than on producing the best patient care. With each department running their trials – and each often at war with the other – finding the best approach for patients was impossible.

Patients with cancer tended to get surgery, radiation, or chemotherapy depending on which doctor they saw. Most only got one choice, but when more were added, the lack of studies on multiple therapies meant that patients often got huge doses of each – leading to sometimes awful outcomes. To add more mischief, two national clinical trial groups were outside the entire process and were doing, in DeVita’s words “boring, repetitive and wasteful clinical studies”.

DeVita was asked to take over the Division of Cancer Treatment, and agreed to if all the cancer treatment efforts were put under one roof. In 1980, he became the National Cancer Institute Director and remained there for 8 years, where he instituted various reforms. During that time, DeVita brought an empirical approach to cancer that emphasized patient health.

To that end, he brought in a public health specialist called Peter Greenwald, MD, DrPH, who later stated, “we needed to change the whole climate, the whole staff […].” Cancer prevention, for instance, became a focus for the first time, and the NCI actively engaged in efforts to reduce smoking and improve diets.

The Not-So-Memorial Sloan Kettering Cancer Center

In 1988, DeVita became Physician-in-Chief and Attending Physician at one of the oldest and probably the most famous cancer center in the world – the Memorial Sloan Kettering Cancer Center (MSKCC).

People came from all over the world to get treated at the famous MSKCC but – too often, DeVita asserted – they got substandard treatment. Instead of using its immense endowment to explore new approaches to cancer, the MSKCC had become sclerotic as the “old guard” running it “reflexively rejected” new approaches.

Even though it was clear by 1988 that lumpectomies were now considered the standard of care for women with small tumors, every woman with breast cancer at the MSKCC received a radical mastectomy.

Because MSKCC didn’t believe in adjuvant or post-surgical chemotherapy, nobody got that either, with the inevitable result that some women’s cancer would return in a different organ and they would likely die. Nor were patients likely to get radiotherapy – the most prominent cancer center in the world had gone all in on surgery – when it was clear to everyone else that combination therapies were the most effective.

DeVita recalled a presentation at the MSKCC where Bernie Fisher was screamed at by a surgeon who was advocating “super-radical mastectomies” and called “a traitor to his profession”.

If a drug or treatment protocol hadn’t been developed at the MSKCC, it was automatically suspect, and if an MSKCC drug or protocol was available, it was used. The huge research department was isolated from the clinical wing, with the result that while a lot of basic research was being done, little of it had application to the patients.

Plus, the patient facilities were rundown, the radiotherapy department was using out-of-date machines, and a crumbling administration was inefficient – leading to long lines of sick patients waiting for their care.

DeVita began by bringing in new leadership and instituting grand rounds conferences that brought leading cancer researchers to the hospital to speak. Eight years later, after clashing the President of the MSKCC, he was out – and headed to Yale to become the Dean of Yale School of Medicine. He left behind, however, a strategic plan that would ultimately serve the MSKCC well.

Yale Gets Its Lifeline – and More

DeVita found that Lasker had been right to distrust academia – the universities and the NCI’s Cancer Centers were almost wholly centered on basic research. Yale – which contained one of the NCI’s Cancer Centers – was floundering, and was in danger of losing its designation and the funding that came with it as an NCI Cancer Center.

DeVita reported that he was stunned by what he found. Twenty years after becoming a National Cancer Center, Yale didn’t even have a physical building devoted to cancer care. “Nothing,” he said, was going on. Focused research was a “joke” and Yale’s clinical trials program was housed in a closet.

Things were in such disarray that a breast cancer patient who had a biopsy would have a needle put in her chest and then wheeled three blocks to the building where the biopsy took place. No signs directing patients to the “cancer center” existed because there was no “Cancer Center”.

Part of the problem is the tenure system at universities. To earn tenure, researchers are expected to turn out dozens of research papers, but because clinical trials take years to complete and get published, budding professors stay away from them.

Before he left the NCI, DeVita had spent six years driving through stricter guidelines for the Cancer Centers that required viable clinical trial programs, and greater authority of the Directors concerning research, clinical trials, etc. In effect, the goal was to get the Centers out from under the university’s thumb and back to their original mission – to help patients.

Yale was the first Center to be assessed under the new guidelines. DeVita made it clear that it did not pass muster, but with the former head of the NCI in charge, Yale was given a lifeline.

DeVita called getting an actual clinical center built at Yale “maddening”. The hospital didn’t want anything to do with research and the University didn’t want anything to do with clinical care. It wasn’t just Yale – these problems permeate the NCI’s cancer centers found at academic institutions across the country.

Hope

It’s been a pretty grim story so far; by the end of the book, though, DeVita has some good news. Despite all the problems, the trend has been steadily upward. After a slow start, the NCI’s cancer centers have improved.

Ten years after he left, Sloan Kettering had acted on all ten items of the strategic plan he’d left beyond and he now considered it an excellent center. Yale now has a physical cancer center and is actively integrating its cancer research and clinical programs.

When this book was written, DeVita stated that the Memorial Sloan Kettering once again had world-class breast, pediatric, urologic, and neurological cancer programs (but still lagged in lymphomas). Yale was best in class at treating cutaneous T-cell lymphomas) but was behind the times in urologic cancers.

The Mayo Clinic was great at treating “common tumors”, but he would never send a difficult case there. NYU’s Perlmutter Center is an ace at brain tumors but not much else. The list goes on – for adult leukemia to go to MD Anderson in Houston; for myeloma – check out Dean Farber; for difficult cases of breast cancer – the University of Pittsburg was the best place to be.

How effective a Center is at treating a kind of cancer depends upon its resources, its staffing, and its organizational capabilities. DeVita said the PDQ (Physician Data Query) can help patients find the best cancer care. It’s rarely needed, though, as the vast majority of cancers are perfectly well treated at community hospitals. Only the 15% of cancer patients with particularly difficult cancers should be seen by specialists at the big centers.

Cancer, of course, is still a major killer, but five-year cancer survival rates are up 50% since DeVita began his work, and overall mortality rates are declining by a remarkable 2% a year. The hundred billion dollars or so that’s gone into cancer research has more than paid its way economically.

DeVito sees the day when most cancers will be considered chronic diseases that can be managed over time. Chronic myeloid leukemia, for instance – a death sentence in the 1970s – is now perfectly managed by taking a pill a day. The cancerous cells are not gone – they’re simply no longer growing and the patient effectively has a chronic disease.

Some cancers will be managed with long-term low doses of easily manageable chemotherapy. Targeted chemotherapy treatments based on the genetic makeup of the tumor are increasing survival rates. Vitamin A derivatives plus standard cancer protocols have turned acute leukemia – formerly a death sentence – into a 70% curable one. Even the dreaded melanoma is susceptible to treatment in many cases.

The Curve and ME/CFS, Fibromyalgia, Post-Treatment Lyme Disease and Long COVID

What could DeVita’s saga through the upper reaches of our medical system mean for us? Cancer is a big deal, and the National Cancer Institute at the NIH will get $7.2 billion of funding this year. ME/CFS, FM, and most post-viral diseases get a fraction of that and are still struggling to break into the medical mainstream.

Cancer had a reputation similar to that found in ME/CFS today – it was considered unbeatable, a black hole for research when DeVita started out. Propelled by figures like Mary Lasker, cancer received the funding it needed and progress was steadily made.

Building a more efficient field and uncovering the best practices of care was challenging. At each step of the road, pioneering figures like Emil Freireich, Bernie Fisher, and Vincent DeVita faced steep challenges from the “old guard” – the purveyors of received wisdom – and from doctors and researchers who cared more about their incomes than their patients’ lives.

The good news is that despite the horror stories, the pioneers won out in the end, and the barriers that so hobbled the field in the beginning have mostly been overcome. While the field continues to evolve and still has its warts, it’s in better shape than ever.

ME/CFS, FM, and post-viral diseases are not in such a different state as cancer was in the 1960s. If Ron Davis is right, the problem is not so much that these diseases are disbelieved but more that they are perceived as impenetrable problems. They face the same resistance from the “old guard” the pioneering cancer researchers did.

DeVita’s book, however, shows the way to beat ME/CFS, FM, long COVID and the like. The good news is that these fields are on board. Enough with siloed research. Enough with small, inconclusive studies. The advocates at the Solve ME/CFS Initiative, the Long COVID Alliance, the Patient-Led Long COVID Research Collaborative, and others are seeking to replicate DeVita’s path. It isn’t rocket science. It isn’t anything that anyone doesn’t know. Research flourishes when it’s comprehensive and well-organized. That’s why these organizations are trying to create an NIH institute of post-viral diseases.

We’ll see what happens, but whatever happens, we should know that no matter how slowly it moves or what dips it may take, in the end, the curve has always bent upwards – and it is bending upwards right now.

The RECOVER Initiative, as problematic as it is right now, still demonstrates what a different era we’re in now. RECOVER first received $1.15 billion from Congress and then another $500 million from the Biden administration recently to study a kind of disease – a post-infectious disease – that was completely ignored four years ago. The importance Congressional action played in the NCI’s emergence as a major institute and in long COVID cannot be overstated.

Note that while the RECOVER Initiative may be in trouble, so were the National Cancer Institute and its Cancer centers at their inception.

The curve is bending upwards. The only question is how much time it will take to bend enough.

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