Cancerous
The Essentials Newsletter, Forty-fifth Edition
I just finished reading a book written by my close friend, Cheryl Stratos, about her successful battle against Stage IV melanoma. You read that right; she beat melanoma at that deadly stage. Her book, entitled Terminal Hope, details how she survived to write about it 16 years after being given a prognosis of six months to live. After getting through the first several years of her treatment, Cheryl has since immersed herself and used much of her considerable energy to help prevent and, ultimately, cure melanoma.
What does this have to do with the reason behind this newsletter? As a reminder, healthcare is a critical infrastructure (CI) sector, even though it is one that I, admittedly, have the least interest in from a public policy perspective. Don’t get me wrong, I admire the people who dig into it, but it’s just not my thing. So much so that I steered clear of it while doing my tour of duty on Capitol Hill many years ago, even as I managed to support my bosses on many of the other CI sectors’ policy issues, at least at a high level.
Even with only a cursory knowledge of the sector, however, Cheryl’s book illustrates what we already know intuitively, whether we have a background in healthcare policy, are in the industry as a practitioner, or have experienced it as a patient – the system itself can produce incredible innovations through dedicated and brilliant researchers and doctors as well as investments from the private and public sectors, but these very innovations are often difficult to access, especially for patients given weeks or months to live.
Because of my deep aversion to the healthcare policy arena, my context and knowledge is very limited in terms of the barriers to solving this foundational issue. Therefore, I will only offer some high-level observations related to the healthcare CI sector. However, on the issue of cancer specifically, there is an impact on CI sectors more broadly that I want to note and that could be a reason for, you guessed it, cross-sectoral collaboration.
My high-level observations about why people don’t gain access to critical clinical trials or treatments, whether for cancer or other thorny diseases, are:
Lack of knowledge by the practitioners themselves. Doctors, even - oncologists, sometimes don’t have the resources or bandwidth to keep their fingers on the pulse of every potential clinical trial or new drug while faced with treating patients who are suffering or even dying. This knowledge deficit is also true for rare diseases, such as the one my stepfather had, a brain disease called normal pressure hydrocephalus (NPH), for example. Many neurologists aren’t familiar with the disease and, therefore, misdiagnose it as Parkinson’s Disease. The crucial difference is that NPH is treatable, such that symptoms can be eliminated, while Parkinson’s is a progressive disease. If NPH is left untreated, it is deadly.
Lack of knowledge by the patient or the patient’s advocate (whether a spouse or other close family member, or friend). If you don’t even know what’s possible, how can you advocate for it? The internet has given patients more tools to educate themselves, which is a good thing. However, it can still take precious time that some people dealing with a cancer diagnosis and the barrage of scans, chemo/radiation treatments and/or surgeries just don’t have.
Lack of communication/silos amongst key researchers and practitioners. Even those with the knowledge don’t always communicate well with each other, for whatever reason – could be sheer overload, could be ego, could be a host of reasons. That lack of communication creates blind spots, which in turn limit treatment options for certain patients.
Ridiculous bureaucracy/power trips. It made my blood boil reading in Cheryl’s book about one of the “gatekeepers” at a key cancer hospital who was super unresponsive and difficult. Why? Feels like a “mall cop” situation – a small amount of power going to someone’s head with real-world, life-or-death consequences.
Dealing with healthcare insurance providers whose knee-jerk reaction is to not approve expensive clinical trials or even approved medications. While these insurers sometimes come around, again, it takes time and effort to fight that fight.
Some of these observations are inherent aspects of human nature that are hard to overcome. Still, on the points about making it easier for patients and doctors to access information about what’s out there, Cheryl and one of her friends (who lost her husband to melanoma) joined forces to develop a website that is intended to make some of this information more easily accessible – 1104health.com, “bridging the gap between cutting-edge research and real-world patient care.” I’m sure other people are working to provide this needed transparency and help in other channels as well. Keep it up, all of you!
Now, on to the point of why other CI sectors beyond healthcare should care about improving cancer death rates and treatments and, ultimately, finding a cure for all cancers. Beyond the very personal, tragic loss experienced by the loved ones of those who have lost their lives to cancer, which is the main reason we should, as a society, continue to invest in its eradication, from a pragmatic perspective, there is the very real drain on our workforce. One of the main themes I’ve heard from the energy sector over the last decade is the workforce constraints created by the retirement of the massive baby boom generation, as well as the dwindling pool of highly skilled workers in younger generations. That squeeze is impacting other CI sectors as well.
According to the CDC, cancer deaths in 2024 were the second-highest cause of death in the U.S., at 619,812, with the highest incidence of death going to heart disease, at 683,037. The third highest cause of death was not even close to the top two – “unintentional injury” accounted for 196,488 of fatalities in 2024. Of cancer deaths, approximately half are those over 70 years old, and most of the other half are those between ages 15 and 69, with a significant portion of those people being in the 50-69 category – the age where many achieve the pinnacles of their career and are critically needed to pass along their knowledge and wisdom to the next generation. With about 250,000-300,000 cancer deaths in this category, all industries, but especially those in the CI sectors, should be sitting up and taking notice.
It would take a lot more research and correlation to precisely derive the subset of these people who worked in CI sectors, but a back-of-the-envelope look at the Bureau of Labor Statistics’ data shows that, conservatively, about half of the U.S. workforce is employed by the 16 federally designated CI sectors. If you take half of the annual cancer deaths in this key 50-69 age demographic, you have about 125,000-150,000 people in these sectors succumbing to cancer each and every year – adding up to well over a million in a decade. With these CI sectors employing in the ballpark of 80 million people, that is a significant portion of their workforce being wiped away by this horrible disease.
As noted above, heart disease is the primary cause of death in our country – as such, prevention and treatment of this disease should continue to be supported by us all, of course. The reason I am highlighting cancer as opposed to heart disease is that the underlying risk factors for certain cancers are still not well understood, and the known treatments can be frustratingly inconsistent in terms of efficacy. Contrastingly, heart disease risk factors are well understood and can be alleviated or treated in many cases. The treatments for heart disease can also be applied broadly – i.e., lowering cholesterol through a healthier diet, exercise, and/or medication can improve heart health. In the case of cancer, the myriad ways it manifests means cancer treatments and potential cures focus on specific cancers rather than cancer as a whole. Even within particular cancer types, like Cheryl’s melanoma, the treatments can help some people and harm others. It makes investments difficult, reminding me a bit of “whack-a-mole.”
Interestingly, cancer researchers, whether intentionally or not, have discovered that some cancers are caused by viruses and can be prevented through simple vaccinations. Other cancers can be alleviated, if not eradicated, by avoiding certain behaviors, such as smoking, in the case of lung cancer. But with cancer, there are always exceptions to the rule – non-smokers can still get lung cancer and people with no apparent family history can still get breast cancer, to cite a couple of examples.
Back to the reason why CI sectors should focus on cancer prevention, treatments, and cures. The humanitarian element is obvious, as this disease often targets people in the prime of their lives – this is devastating to their families, friends, work friends, and colleagues. It can also take a toll on the culture and on the mission of CI organizations. So if all the CI sectors linked arms to focus, and I mean focus, on the gamut of cancers impacting our coworkers and friends, it could finally tip the scales to achieving a cure. It would also be a positive way for these critical sectors to focus on such a critical and awful disease. The people in these CI sectors, including healthcare, are used to achieving what some deem impossible. Miracles of engineering, design, and innovation have come out of these sectors. Could helping to cure cancer lead to the biggest miracle of all?