Scarlet Letters and Healthcare

When I was in high school in the 1970s, one of our reading assignments was The Scarlet Letter by Nathaniel Hawthorne. Though subtitled “A Romance”, I doubt any high school boy was interested in love per se; rather, we were consumed with the forbidden thrill of sex outside of marriage and the subsequent public humiliation of the offenders – at least the young Hester Prynne in the story, who was both imprisoned and forced to parade in public, forever wearing an embroidered scarlet “A” (for adulterer) over her breast. Nothing like the threat of guilt (or disease!) to keep a young boy “pure,” or so we were raised to believe.

Then there was Mary Mallon, an Irish immigrant and domestic worker and cook in New York City in the early 1900s. She was also an asymptomatic carrier of Salmonella typhi, bacteria that infect the gastrointestinal tract and blood. Seven of the eight families she worked for contracted typhoid fever, which at the time had a 10% fatality rate. She refused to believe she was the source of disease – she wasn’t sick herself, and the concepts of germs and hygiene disease were in their infancy at best – and she continued to work and evade authorities for quite some time. She ultimately was forced to live in quarantine for decades and died alone. She will forever be known as Typhoid Mary.

There have been times in history when labels like “Typhoid Mary” or Hester Prynne’s scarlet “A” have carried an even more sinister meaning. As part of the Nazi extermination program during World War II, Jews were forced to wear a yellow Star of David on their outer clothing with the local language word for “Jew” inscribed in the star. According to the United States Holocaust Memorial Museum, “[The Nazis] used the badge not only to stigmatize and humiliate Jews but also to segregate them, to watch and control their movements, and to prepare for deportation.” For six million Jews and millions of others, including homosexuals and the disabled, that meant death. January 27 was International Holocaust Remembrance Day. I was reminded that day by an old friend of her parents, who were some of the few survivors of Auschwitz. They bore the forearm prisoner identification tattoos they received in the concentration camp as teenagers for the rest of their lives.

Being reared in a conservative and deeply religious community, my formative sense of morals in high school was very black and white. An ethic where actions are only right or wrong leads to equally black and white decisions to punish or not (and, obviously, wrongdoing should never go unpunished!) – in other words, not unlike the Puritan ethic in The Scarlet Letter. There was little room for nuance or grace. 

Healthcare shaming is not unique to Typhoid Mary. Think of the AIDS crisis, when just being gay was considered a disease. Now the COVID-19 pandemic – especially with the ubiquity of social media – has taken public shaming into a new and different realm. To die from COVID-19 now that vaccines are available is practically to have a scarlet “C” affixed to your name and legacy, forcing some families to keep COVID-19 deaths a secret in order to protect them from shame and social stigmatization. Some are separating victims into the vaccinated – worthy of our sorrow – and the unvaccinated – deserving only of disgrace. Websites have sprung up shaming victims with great vitriol. As The Atlantic noted, “With the arrival of vaccines, compassion for COVID-19 deaths began to dry up, sometimes replaced by scorn.” Facebook and Instagram accounts of the deceased and their relatives can be flooded with mocking comments. It is public COVID-19 shaming as blood sport. One family, while acknowledging their loved one who died from COVID-19 was not vaccinated, nonetheless pointed out that vaccination decisions have been quite difficult for some. “We think he was a victim of misinformation,” the deceased’s daughter lamented. She was pleading for understanding and grace.

Unfortunately, we have more of a Puritan mindset all around than we care to admit. Legalism and judgmentalism are increasing on both sides of the political spectrum, with some on the right fighting to have government enforce their preferred religious beliefs and some on the left want to cancel those who they deem to be bigoted. Neither extreme allows dissent or disagreement. Despite our talk of tolerance, we only tolerate that with which we agree. Black and white. Judgment only. No grace. Depeche Mode sang about it in their 1984 hit: People are people / So why should it be / You and I should get along so awfully / So we're different colours / And we're different creeds / And different people have different needs / It's obvious you hate me / Though I've done nothing wrong / I've never even met you so what could I have done. 

We cannot minimize the incredible number of deaths in this pandemic – nearly one million so far – or deny that choices (both societal and individual) have consequences. As I started this column, a good friend’s unvaccinated 20-something niece was on a ventilator with respiratory and liver failure due to COVID-19. She, too, is a victim of misinformation as well as COVID-19, in her case pervasive and false information about vaccine effects on fertility. No amount of gentle urging on the part of relatives could convince her once that doubt was seeded. She was one of the fortunate ones who came off the ventilator and was discharged home, but she still has a lengthy recovery ahead. This family needs prayer and grace, not a scarlet “C.”

Though we are understandably tired of the pandemic – tired of masks, tired of vaccines and boosters – we cannot allow ourselves to tire of compassion, even as we fight to educate and persuade. The Puritans in The Scarlet Letter were so busy judging that they could not feel empathy. Compassion for others forbids us from placing a scarlet letter on anyone’s chest. We don’t know – and don’t need to know – the back story of the injured traveler in the Parable of the Good Samaritan. What was he doing on that road at that time of day? Shouldn’t he have known better? We are simply commanded to have mercy, loving our neighbor as ourselves.

Rosie the Riveter and Dolly Parton

The time was the early 1940s. America was at war. The aircraft and munitions industries heavily recruited women to take up important jobs in support of the war effort. In 1942, artist J. Howard Miller created the iconic, yellow background “We Can Do It!” poster of Rosie the Riveter, dressed in blue and wearing a red bandana, flexing her arm and looking straight at you. There is a power of iconic images like Rosie the Riveter to motivate people and to effect change.

We are engaged in battle again today, this time against a deadly virus. The nation needs a modern-day Rosie to recruit for the COVID-19 vaccine war effort. Who better than Dolly Parton, who not only rolled up her sleeve to get vaccinated, she donated $1 million to Vanderbilt early in the pandemic, which helped lead to the Moderna vaccine. To be precise, Ms. Parton did not have to roll up her sleeve when she got vaccinated. Her sparkly “cold-shoulder” top allowed her to get her shot without a wardrobe adjustment. Now it’s a fashion trend. I’d like to nominate her for sainthood.

I’m not sure even a Saint Dolly could increase vaccination rates enough to reach herd immunity. Vaccine hesitancy is astonishingly high. Though political leanings play a role, it is certainly not as simple as Trump supporters versus all others. Jonah Goldberg, writing for The Dispatch, noted that when the COVID-19 pandemic began, very few conservatives and Republicans disagreed that the government had a role to play: “pandemics, like wars, are supposed to be tackled by the government.” Even the staunchest libertarian – focused on “autonomy and political freedom” – can understand that preventing the spread of communicable disease is a necessary and worthy role of government, even as certain means to control disease (government shutdowns, for example) are questioned.

But the libertarian forfeits their principled position when their personal right to act becomes a belligerent and ignorant – not to mention community-harming – stand. So went Custer. Some are even wearing the decision not to be vaccinated as a badge of honor.

When you combine a growing libertarian streak with the individualism and sense of invincibility common among Millennials (aka “Generation Me”), it is easy to see why vaccination rates trail off dramatically the younger you look. A cynical person might suggest that Millennials just want the excess number of Baby Boomers to die from COVID-19 so they don’t have to support them in retirement. Plus, they’ll get their inheritance sooner. After all, those old people were going to die anyway. (Yes, I have heard it said on more than one occasion that COVID-19 didn’t really kill older people; they were going to die anyway.)

Young adults aren’t invincible, despite podcaster Joe Rogan telling them they don’t need to get vaccinated. (He later walked back that comment, stating, "I'm not a doctor. I'm a f---ing moron.") It sells more papers (or internet and social media ads) to play up the rare vaccine side effects than to tell the stories of young people who suffered or died from severe COVID-19. But those stories are out there. Serious cases are on the rise in younger adults, creating a create a "reservoir of disease" that eventually "spills over into the rest of society." Without a doubt, President Biden should order US military personnel to get vaccinated. Our military must be fit at all times.

I have had many thoughtful discussions with people who have not yet gotten vaccinated. Outside of conspiracy theories, I have yet to hear an argument that is not based ultimately on either fear or self-centeredness. The most sensible argument made against the COVID-19 vaccines is that we don’t have enough long-term safety data. (The original argument was that they were developed too quickly, but that was a false argument from the start. Years of advance research laid the groundwork for COVID-19 vaccine development.) But with hundreds of millions of doses given – and only extremely rare serious side effects seen – the safety of the vaccines being given in the United States is unquestioned. Pregnant women can get vaccinated, and there is no evidence any of these vaccines affect fertility.

True anti-vaxxers are a lost cause. They are crazy. You can’t reason with a conspiracy theorist. But there are many honest folk who have heard so much misinformation that they either don’t know what to believe or just can’t get rid of their doubt. These are the people who need to step up and take responsibility for more than just themselves. Otherwise, we are left with pure selfishness. Rosie would not approve.

Though vaccine hesitancy is seen across the nation, rural and conservative areas are the worst. Once again, as with almost every health metric from smoking to obesity, from education level to income, rural America comes in last. One may have different political beliefs and still unite in caring for the poor, the vulnerable, the least of these. Love and justice demand it. The New York Times argues that vaccine hesitancy isn’t a knowledge problem; it is about gut beliefs or “moral intuitions”. Vaccine hesitancy among evangelical Christians is pathetically high. What amazes me is that the folks who claim the moral high ground and purport to be concerned for the eternal welfare of others apparently don’t care enough about others’ lives here on earth to take a simple shot.

So, for the freedom loving, anti- big government individualists out there, hear me: You can mistrust authority and love your neighbor. You can hate Dr. Fauci and still protect your grandmother. You say you love your country? Then protect her and end this pandemic. It boils down to “where your treasure is”. Is your core motivation the “moral preference for liberty and individual rights”, or is it “love your neighbor as yourself”? Maybe one choice honors both. Rosie the Riveter rolled up her sleeve. So did Saint Dolly. You should, too. 

OpenNotes Mandate: A Box of Chocolates

Sometimes cans get kicked so far down the road that we forget about them. Such is the case with a 2016 federal Health Information Technology mandate known as the 21st Century Cures Act Info Blocking Rule, advocated by a non-profit organization known as OpenNotes. The Final Rule ostensibly is designed to give patients secure and free access to almost all of their electronic health information (EHI). The deadline for implementation of the “Information Blocking” rule was set for last November, but was delayed at the request of the American Medical Association and other medical organizations until April 5, 2021, primarily due to the COVID-19 pandemic.

 

The rule states that eight types of clinical notes can’t be “blocked” and must be made immediately available to patients: consultation notes; discharge summary notes; history and physical; imaging narratives; lab report narratives; pathology report narratives; procedure notes; and progress notes. Some notes, such as psychotherapy notes and information “compiled in reasonable anticipation of, or use in a civil, criminal or administrative action or proceeding,” are exempt.

 

It is certainly not a bad idea for patients to have access to their medical records. The OpenNotes organization promotes research showing that when health professionals offer patients and families ready access to clinical notes, the quality and safety of care improves, costs are lower, and communication and engagement are enhanced.

 

So how does this OpenNotes concept of immediate access to medical records work in my clinic? Though my Cancer Center electronic medical record (EMR) has allowed patient access via an online portal since 2014, I can count on one hand each year the number of patients who actually care to access their chart. In a rural, less educated region where computer savvy and broadband access are limited – especially in a typically older cancer patient population – patients often don’t have the means or the knowledge to look up their records on a computer. Many don’t even have a smart phone.

 

Still, some patients are quite computer literate. In the best of circumstances, I have patients who come from other hospitals – facilities in the Texas Medical Center in Houston, for example – who can access outside lab and x-ray reports on their iPhone while sitting in my office. That can be such a timesaver, especially when calling physician offices and medical records departments is a hit-or-miss, time-consuming operation. Fax machines, an unreliable relic of the last century yet still the main means of sharing documents in a HIPAA-compliant fashion, are too often offline or busy.

 

But this OpenNotes mandate is like Forrest Gump’s proverbial box of chocolates: “You never know what you're gonna get.”

 

Scott MacDonald, MD, an internist and electronic health record medical director at UC Davis Health, notes that there are sensitive issues, such as with adolescents and reproductive health, where "we know that some parents have sign-in information for their teen's portal." With clinical notes now on full display, potential problems "may be out of our control."

 

To illustrate, I have a patient who recently had a biopsy that I ordered. Realistically, I would expect a preliminary result in perhaps 48 hours. Often, particularly detailed pathologic studies can take days longer, sometimes even a week or two. My standard practice is to have the patient come in to discuss pathology results as soon as I receive a printed, finalized copy from the pathologist. In this instance, the patient called my office in a panic the very next morning after his biopsy because he received a text notification on his cell phone – thanks to the OpenNotes mandate – that a new medical record had been uploaded to the EMR access app on his smart phone. He clicked on the link to find his pathology report stating he had cancer. Not knowing how to interpret a pathology report, he assumed from what he read that he had four different types of cancer. Ironically, I was not yet able to access that very report on the hospital’s system. In other words, the patient – and only the patient – had access to some very scary information without the benefit of the customary and compassionate face-to-face discussion where we could explain what it all meant. The doctor-patient relationship was utterly – possibly dangerously – circumvented.

 

Information Technology has become the tail that wags the healthcare dog. Global IT spending is expected to exceed $4 trillion in 2021. The most common complaint I hear from patients about other physicians’ offices is that the doctor never looks at them – their back is turned to them as they face a computer instead of the patient, often charting so-called “quality” indicators that have nothing to do with the current patient visit. I do not have a computer in my exam rooms for this very reason: the patient is here to see me, not the back of my head. Granted, that is a luxury many providers don’t have, given time constraints and crowded schedules. Regardless, providers must remember to keep the patient literally in front of them.

 

How we chart – what language and phrases we use, how we describe complex concepts and procedures – may change as a result of the OpenNotes mandate, as we now are speaking not only to our medical colleagues but to our patients as well. Some would argue – rightly, I believe – that we should have been talking to and writing for our patients and not above their heads all along.

 

Will the OpenNotes mandate end up being a positive thing for patients and doctors? On the whole, I believe so. I appreciate when patients comment that they have read their records. They ask more questions, which lets me know what I have explained well and what needs work. An engaged patient is a good thing. But with every box of chocolates comes the unwanted dud (anything with coconut, in my opinion). We must anticipate these unintended consequences and be proactive with our patients, always educating and ever ready to comfort. Our role as healer may not have changed, but how we do it always will.

Bruised Arms and Bruised Egos – They Will Heal

I have never seen people so grateful to feel flu-like before! Those who have been able to get their COVID-19 vaccinations are happy people. They are proud of their bruised arms and temporary achiness. They walk around with their head a little higher, with a little more spring in their step. It is as if a huge weight has been lifted off their shoulders, even though they still need to be safe.

A sore arm and temporary flu-like symptoms are a small price to pay for extraordinarily effective and safe vaccines. It turns out the Pfizer and Moderna vaccines are virtually 100% effective at preventing hospitalization and death from COVID-19. Out of more than 30,000 trial participants who received either vaccine, only one person became ill enough from COVID-19 to be hospitalized. The Johnson & Johnson vaccine looks to be equally effective at preventing severe illness and hospitalization. For those who have been reluctant to get vaccinated, this excellent news should be quite reassuring.

We are still in the midst of a severe outbreak in Angelina County. As February began, Texas was seeing a 20% decrease in coronavirus cases. However, Angelina County remains in the midst of an “extraordinarily severe outbreak” and at an “extremely high risk” level. Governor Abbott even surged a Department of Defense team to Lufkin to help with our high rate of hospitalizations. Angelina County has had more than 7,350 cases of coronavirus infection since the pandemic began with225 deaths, more than twice the death rate as Texas. Eighty-one of those deaths have been this year.

Unfortunately, most people have yet to get their first shot. They wonder when that day will come for them. The simple fact is, in order to vaccinate more people, we need more vaccine. Much has been made of the delay in getting Lufkin designated as a hub for coronavirus vaccinations, a designation that allows the state to send vaccine in greater numbers than we have been receiving thus far. Our collective frustration arises from the fact that we consider ourselves a healthcare hub for deep East Texas. We have high standards. We know what we can accomplish when we put our mind to it and work together.

Early vaccination efforts were scattershot based on who got vaccine. Each individual entity that received doses – hospitals, clinics like Urgent Doc, the Angelina County & Cities Health District, pharmacies – barely had the manpower to administer the vaccine they were allocated, much less the large volume needed going forward.

As this paper pointed out in last weekend’s frank editorial, we are frustrated that we weren’t one of the first places to be designated a vaccine hub. The hub designation “delay” clarified that communication and cooperation across organizations is an absolute must going forward. Egos have been bruised, not just vaccinated arms. No single person or organization bears all the blame. Lessons have been learned and it is time to move on.

While we were pointing fingers over the hub designation, we overlooked the fact that we are actually vaccinating people at a faster rate than the state and national averages. As of February 4, the day before Lufkin was designated as a vaccine hub, 8.2% of the US population had received at least one shot. Texas was at 7.2%, embarrassingly behind our neighbors New Mexico, Louisiana, Arkansas, and Oklahoma. Yet, 6,384 people in Angelina County had received at least one dose – 9.46% of the eligible population. Even before hub designation, more than 11,000 doses had been shipped to Angelina County since the start of vaccinations. That’s a good start, and a credit to both hospitals, various pharmacies, Urgent Doc, and the health district. But the demand for vaccine is astronomical. Brookshire Brothers – God bless them! – stopped taking names on their vaccination waiting list when an astounding 130,000-plus people had signed up.

Can we do better? Of course. We must. We need to be vaccinating several thousand a week, every week. A fabulous local volunteer effort, organized by Jane Ainsworth and Patricia Jones, will help Sharon Shaw and the Angelina County & Cities Health District get there. Angelina College is organizing staff and student volunteers and offering student nurses to assist with vaccinations. AC’s Krista Brown and Sarah Alvis will help with website and social media marketing efforts once registration and reporting software has been obtained. The TLL Temple Foundation has stepped up to help with that purchase. Rep. Trent Ashby is making sure the state gets more vaccine allocated to us, now that we have hub designation. The more we know, the more we realize this absolutely was going to require everyone’s support. It takes a village to vaccinate a village!

Still, the public needs ongoing information and reassurance. We expect transparent, timely, and reliable pandemic information. The health district, city and county need a designated pandemic spokesperson whose job it is to share facts and educate the public; otherwise, we will be consumed by rumor and fear. What exactly is “the plan” that got us the hub designation? How many are expected to be vaccinated over what period of time? Who goes when? How do people get on “the list” and have confidence that they won’t be forgotten when their appropriate time comes? What are we doing to assure equitable distribution to Black and Hispanic communities and to those who don’t have access to social media and online registration? Tell us, then tell us again; don’t make us beg for information.

I am grateful a more comprehensive vaccination machine is getting ramped up and ready to go, in the end due to the very cooperation, communication, volunteer spirit and get-it-done attitude that make Lufkin and Angelina County a special place to live. We shine as a city and county when we all work together toward common goals for all our citizens. That’s a #LufkinStrong shot in the arm we all need!

Will a Coronavirus Vaccine Be the Answer?

The novel coronavirus has changed our lives. Just about everything we do is affected by mask-wearing and social distancing. The economy has been reeling, although you wouldn’t know it by looking at the stock market. There have been more than 6 million cases in the US and closing in on 200,000 deaths so far. Thankfully, scientific knowledge around coronavirus is expanding at an unprecedented pace. Everyone is looking for a silver bullet against coronavirus. Many hope a vaccine will be that bullet.

Development of a coronavirus vaccine is an urgent priority of the federal government. Since its inception in May, Operation Warp Speed – the collaborative effort between the U.S. Department of Health and Human Services (HHS) and pharmaceutical companies to develop and produce hundreds of millions of doses of coronavirus vaccines – has helped identify well over one hundred vaccine candidates and implement dozens of trials. Nine vaccines are in large scale phase 3 trials. Projections of when a vaccine will be available have ranged from October (per President Trump in the early days of the vaccine development) to the end of 2020 or, more likely, early 2021, according to recent comments by Dr. Anthony Fauci, Director of the National Institutes of Health’s National Institute of Allergy and Infectious Disease. Dr. Fauci seriously doubts we will have to rely on an international vaccine (think Russia or China), having openly criticized the Russian President Vladimir Putin-promoted effort as “bogus”.

Obviously, the sooner we have a vaccine, the better. The Centers for Disease Control and Prevention (CDC) is calling on states to have vaccine distribution sites fully operational by November 1, a gargantuan task. That does not mean a vaccine will be delivered on November 1. We need to temper our expectations of what will happen – and how quickly – once a vaccine becomes available.

The goal of any vaccination campaign is “herd” (community) immunity, where a sufficient proportion of a population is immune to make disease spread from person to person unlikely. In general, 60% or more of a community or population needs to have either had a particular infectious disease or be vaccinated against it in order to provide sufficient community immunity. Sounds easy enough.

According to the Centers for Disease Control and Prevention (CDC), only 45.3% of adults got a flu vaccination for the 2018-2019 season, ranging from a low of 33.9% in Nevada to only 56.3% in Rhode Island. Twenty percent of Americans already say they will refuse to get a COVID-19 vaccine, and with another 31 percent unsure, reaching herd immunity could be that much more difficult. On a cautiously optimistic note, there is some speculation that the herd immunity level with the COVID-19 coronavirus might be as low as 43%. That shouldn’t make us think twice about getting vaccinated, however, especially when that vaccine will be effectively free and, if all goes as promised, readily available. The more the merrier, when it comes to people getting vaccinated.

I do worry how long it will take to get 300 million doses of a vaccine delivered and administered in our communities. In the 2009 H1N1 pandemic (caused by a more seasonal flu virus than the novel coronavirus), vaccine doses were first distributed to state and local health departments and then further out to mass clinics, employers, schools, hospitals, pharmacies, and doctor’s offices. Even so, only about a quarter of all Americans got vaccinated before the pandemic played out. The coronavirus vaccination effort will have to be larger and faster, and this pandemic is not expected to fizzle like a flu season does. (We already know that optimistic predictions of a summer lull did not happen.) All that is to say, it may be awhile before we reach herd immunity.

There are other logistical uncertainties as well. Will the vaccine require cold storage? (Probably.) Will a single dose be effective? (Probably not.) How will distribution and dosing be prioritized? (Health care workers? Elderly? Racial disparities?) With so many vaccines in development, “the first” vaccine may not be “the best” vaccine for the long run. I would still take it… and whatever follows as well, if that is what is recommended by the medical experts.

Politics continues to tussle with Science, most recently in the “breakthrough” announced from the White House regarding convalescent plasma as a COVID-19 treatment. FDA Commissioner Stephen Hahn sheepishly had to backtrack misleading comments made about convalescent plasma therapy while defending against Trump’s accusations that the “deep state” at the FDA was making it hard for drug companies to test coronavirus treatments. Thankfully, Politics is funding Science to an incredible extent during this pandemic. I suppose in any dance one partner may step on the other’s toes on occasion. As long as the dance continues, we have hope.

While we wait on a coronavirus vaccine, we should stay current with other vaccinations and definitely get the flu shot this fall. There is some speculation that vaccinations might help “train” or boost our overall immune system. Who knows? And we need to continue to slow the spread of coronavirus by wearing masks (mouth AND nose, please), washing our hands, and social distancing. Remember, this is a community effort.

One final thought. When a coronavirus vaccine does become available – one that is determined to be safe and effective – I would like to see President Trump, Speaker of the House Nancy Pelosi, and other major political and scientific leaders hold a news conference and all get vaccinated together on live television. Lead by bipartisan example! What better way to reassure the public and encourage all of us to follow suit. A vaccine may or may not be a silver bullet, but I am hopeful one (or more) will be a great tool in the fight. 

Coronavirus Information and Misinformation

As a physician, I have been fascinated by the rapid acquisition of knowledge about the novel coronavirus and the deadly disease it causes, COVID-19. True, that knowledge may not be coming as fast as we like. But the pace of vaccine development, for example, is remarkable. But along with knowledge come ignorance, misinformation, and deception.

First, a bit of ignorance. At a rally in Phoenix, in June, President Trump fired up his audience with anti-China rhetoric. In doing so, he displayed his lack of understanding of how COVID-19 got its name. “I said, ‘What’s the 19?’” Trump said. “COVID-19, some people can’t explain what the 19, give me, COVID-19, I said, ‘That’s an odd name.’” Trump apparently thought names like kung flu, Wuhan virus, and Chinese flu were more appropriate.

We can all be forgiven for not knowing something like how COVID-19 got its technical (and not intuitively obvious) name. First, the virus that causes COVID-19 is the novel (meaning new) coronavirus SARS-CoV-2, which stands for severe acute respiratory syndrome coronavirus 2. The first coronavirus caused an outbreak of SARS in the early 2000s. This new coronavirus appeared in 2019; hence, the disease it causes, COVID-19 – CO for corona, VI for virus, D for disease – carries the number 19 for the year it started (2019), not because it is the nineteenth disease (it is not). There’s your – and Trump’s – science lesson for the day.

On to misinformation and deception. Some misinformation is due to inaccurate information. For example, this paper published that while the number of COVID-19 cases has exploded in Texas nursing homes last month, Angelina County is bucking that trend. That turned out to be based on either inaccurate or delayed information, as local physicians are aware of many local nursing home cases. The paper has updated the story as more information has come available. What is certain, however, is that our case count continues to rise.

Lack of information or incomplete information is different from deception. I have written previously about the importance of wearing masks. But mask wearing took another hit recently when our own Congressman Louie Gohmert (TX-01) not only caught coronavirus, he released a video suggesting it was the mask that gave it to him. In his own self-deception, he believes he wears a mask often, but many eyewitnesses (not to mention ever-present news media) suggest otherwise. Gohmert loves history, but history will not be on his side on this one. Deception to support a false narrative is no different than writing history to support a political agenda. Our country has seen too much of that.

When it comes to treatment, President Trump famously has advocated for unproven therapies, from bleach to the anti-malaria hydroxychloroquine. Regarding hydroxychloroquine, the results are in. With strong data that hydroxychloroquine is not effective either as therapy or as postexposure prophylaxis, the Food and Drug Administration (FDA) recently revoked its Emergency Use Authorization, saying it is “unlikely to be effective in treating COVID-19” and that “in light of ongoing serious cardiac adverse events and other serious side effects, the known and potential benefits … no longer outweigh the known and potential risks” for authorized use. Our national coronavirus guru, Dr. Anthony Fauci, minced no words in saying, "The overwhelming prevailing clinical trials that have looked at the efficacy of hydroxychloroquine have indicated that it is not effective in coronavirus disease.” 

This has not stopped President Trump from practically practicing medicine without a license. 

Trump literally is the most famous and influential person in the world. He is not alone in equating personal or anecdotal experience (I did X and Y didn’t happen; therefore, X prevented Y) with rigorous scientific study. My patients do it all the time. However, they do not have an international bully pulpit. His hubris throughout the pandemic in suggesting treatments (like bleach) is jaw-droppingly astounding. (Bleach works on your countertop, right? Why wouldn’t it work inside your body?) Not only is his medical advice suspect at a minimum, it has been dangerous. And just this last week, Trump had his election campaign Twitter account temporarily blocked and a Facebook post deleted when he posted that children are “almost immune from this disease.” When it comes to your health, listen to the doctors.

But don’t listen to quacks, especially those with pseudo-religious and anti-scientific claims. The bleach treatment claim (touted by a family of swindlers who formed a “church” in Florida) falls into that category. But the icing on the cake – so far – has to go to a true charlatan, Dr. Stella Immanuel, a Houston physician of questionable medical training and even more dubious religious authority. She famously believes in alien DNA, demon sperm and that the government is run in part not by humans but by “reptilians” and other aliens. That didn’t stop Donald Trump Jr. declared a video of hers a “must watch,” while President Trump himself retweeted the video.

Unfortunately, attempts to set the record straight regarding coronavirus misinformation by referencing scientific data are considered by far too many to be “fake news” or viewed as a conspiracy theory. Just look at Facebook for examples. I implore you to use this information for how it is intended. Educate yourself on the facts of coronavirus. There is much we don’t yet know, of course. And the vast majority of us – anti-vaxxers excepted – eagerly await a vaccine. In the meantime, please DO wear your mask – over both your mouth AND nose, please! – and DO social distance. DO use hand sanitizer or soap and water often. Together – caring for each other – we can get through this. 

Pandemics and Personal Responsibility

We have been dealing with the COVID-19 pandemic for many months now. What an emotional roller coaster ride it has been. Early thoughts of “flattening the curve” have not panned out in Texas. In Angelina County, there has been a steady rise in cases since early April.  From a healthcare standpoint, much has been written of the way the virus – as if it had a mind of its own – discriminates against minority populations. Of course, the virus itself is colorblind. However, many of the social and economic factors that affect health are not.

The Economist, in a column titled Black America in peril , quotes WEB DuBois, an African American sociologist, who said that the “most difficult social problem in the matter of Negro health” was that so few white Americans were bothered by it. He wrote that in 1899. This “indifference” to human suffering continues today and is perpetuated by a broken procedure-oriented, insurance-driven system of healthcare that is vastly too expensive for everyone, not just those without insurance. The answer is not so simplistic as providing insurance coverage for everyone (although expanding Medicaid coverage is Texas would have significant positive health and economic benefits for the state).

In the United States, these health inequities extend beyond racial classification. The attainment and maintenance of health is a multifactorial and heavily socioeconomic phenomenon.  Enter COVID-19, the illness caused by the novel coronavirus. Once again, we see higher death rates in vulnerable populations. In the middle of a pandemic, we are not going to solve systemic inequities in healthcare.

But that does not mean we are helpless.

Ironically, the most effective prevention intervention – wearing masks – has become one of the most political, with some rights-obsessed conservatives (who presumably wear seatbelts in their cars) selfishly preferring to risk harming others rather than donning a minimally irritating face covering. Why is it that those shouting “personal rights and responsibility” from the rooftops are the ones rejecting the singularly individual action that can save lives?

In a recent interview, Dr. Francis Collins, director of the National Institutes of Health and former head of the Human Genome Project (and, incidentally, a committed Christian, which should be of some comfort to those who are inclined to conflate religious and political viewpoints), was asked, “As someone who is both an acclaimed scientist and a public Christian, what’s your perspective on the pandemic as a cultural issue?” His reply is both compassionate and pragmatic. “Your chance of spreading the coronavirus to a vulnerable person has nothing to do with what culture you come from or what political party you belong to. Your responsibility is to try to prevent that from happening to vulnerable people around you. But our country’s polarization is so extreme that it even seems to extend into a place like this — where it absolutely doesn’t belong. That is really troubling because it’s putting people at risk who shouldn’t be.” 

In times of great social and political upheaval, we can become despondent and feel there is nothing we as individuals can do to fix anything. (Frankly, we put too much hope in elections.) It just so happens that in the middle of this coronavirus pandemic it is exactly individual action that is going to make all the difference. Whatever your personal ethical or religious motivation, we can all follow the Golden Rule. We can follow the command of Jesus – “Love your neighbor as yourself.”  – who undoubtedly would be wearing a mask right now. Go and do likewise. Do it for the least of these. Wear your masks. Save lives.

Finding a New Normal with Coronavirus

We have been self-distancing through the COVID-19 pandemic for a few months now. What a wild ride it has been! Despite the number infected – over 1.25 million – and more than 75,000 deaths, many still question the legitimacy of the extraordinary measures that shut down our economy. Uninformed proclamations comparing COVID-19 to the seasonal flu are an affront to anyone who has been sickened or died from this disease. The average length of stay of those hospitalized (especially those requiring ICU care and ventilator support), not to mention the number of deaths, is far greater than with the flu.

Still, should we have shut down the economy? Professors at the Kellogg School of Management at Northwestern University called it a “brutal trade-off: inducing massive economic suffering in order to save human lives.”  Their research concludes that not closing the economy ultimately would be much costlier to society, potentially tens of trillions of dollars in addition to major loss of life. Consider it a “damned if you do; damned if you don’t” choice. I am grateful we chose to flatten the curve and save lives.

How do we recover from this mess? Many states are starting to loosen restrictive measures to reopen our economy. Trillions of dollars have been designated for businesses and individual taxpayers. That will help ease some of the financial suffering. But, we have paid a collective price psychologically as well.

The unpredictable factor in this recovery is going to be people. What are we willing to do when we emerge from isolation? Some never really changed their behavior to begin with. For those who did take the pandemic seriously – and still do – it is not as easy as flipping a switch and going back to a pre-coronavirus routine. Predictions for a rapid economic boom assume we will all be hitting the malls and restaurants as if nothing ever happened.

Me? I think I have PCSD – Post Coronavirus Stress Disorder. My habits have changed. My sense of personal space and need for barriers is heightened. I avoid people. It will take me months or longer before I go back into a store and don’t wonder whose germy fingers have been on everything. Interacting with strangers – or even friends I haven’t seen in a while – has a more dangerous feel to it. Consciously or not, we are figuring out what our personal risk tolerance is. Are there too many people in that store? Are the employees at that restaurant being careful enough? We decide with our feet and our pocketbooks.

Some will emerge sooner and more confidently than others. Peggy Noonan, columnist for the Wall Street Journal, called for patience and grace when other people are moving faster or slower in the recovery process than perhaps we think they should. “What will hurt us is secretly rooting for disaster for those who don’t share our priors.”  In the church, we refer in jest to some theological differences as “non-salvation issues” over which we can agree to disagree. As we emerge from our coronavirus self-isolation, we should respect that not everyone will be either as cautious or as cavalier as we may be. Extend grace.

The ideal conditions for me personally to feel truly comfortable again would be a) I have been infected (and recovered), and am proven immune, or b) I have been vaccinated. Only then will I regain my more nonchalant attitude toward life. Either of these conditions is imperfect assurance; only time and testing – and good science – will provide clarity on the true COVID-19 status of any of us.

In the meantime, I will continue my new habits (obsessions, really): self-distancing and cleanliness. I will avoid crowds for the foreseeable future. When I attend church services – at least in the beginning – I am at a minimum going to mask myself on entering and exiting, if not the entire service. The last thing I want is to be an undiagnosed carrier who infects an elderly or at-risk fellow church member. In public, I carry disinfectant wipes for use in the grocery store, at the gas pump, etc. Finally, I wash my hands. No, I really scrub them. Lots of bubbles all around. Often. (Admittedly, I still have trouble not touching my face.)

One more thing. Once we have a vaccine, we cannot let the anti-vaxxers and conspiracy theorists have their way. Legislators must remove conscientious and religious exemptions from vaccination requirements.

Eventually – hopefully next year sometime – enough of us will have recovered or been immunized and life truly can return to the pre-coronavirus routine… at least until the next pandemic comes along. Please, can we wait another century for that?

End-of-Life Implications of the Coronavirus Pandemic

We are early in this coronavirus game of social distancing and hand washing. We haven’t quite become weary of it. We joke about it. And yet, I am starting to see – among my friends – some very real concern about our elder parents and grandparents. But we don’t allow ourselves to linger on those thoughts much. We should.

The United States has been accused of being late to respond to the coronavirus pandemic, late to test our US population compared to other countries (South Korea, for example), and “doomed” in our response. Even so, we are just beginning the initial rise of the now well-known bell curve of the Coronavirus Disease 2019 (COVID-19) pandemic. Known cases are doubling every day, it seems. Deaths are increasing as well.

As a cancer physician with additional hospice and palliative medicine (end-of-life care) certification, I view the coronavirus pandemic with increasingly darkened lenses. Coronavirus is a new and immediate threat to life, and we are not ready for what that means. If we don’t succeed in slowing the spread of coronavirus and suppressing new cases – now widely known as flattening the curve – 2.2 million people in the US could die. We are not talking openly – publicly –about how we are going to handle this massive number of deaths with COVID-19.

If the coronavirus epidemic is as bad as some predict it will be, discussions about end-of-life care with this disease will soon become front and center. There may not be enough ventilators for everyone who “needs” ventilator support. Italy has been forced to triage sick coronavirus patients based on age, given that the death rate among the elderly is so high. Italian doctors have admitted that there were simply too many patients for each one of them to receive adequate care. They describe a “tsunami” of patients and a more than 7% death rate (though researchers have lowered the calculated death rate in Wuhan, where the pandemic started, to 1.4%). Preliminary outcomes of patients with COVID-19 in the US show death is highest in persons aged ≥85, ranging from 10% to 27%, followed by 3% to 11% among persons aged 65–84 years.

The Italian society of anesthesiologists issued fifteen recommendations of ethical and medical criteria to consider if ICU beds are exhausted, saying doctors may have to adopt more wartime triage criteria of gauging who has the best chance of survival versus “first come, first served.” Those who are chronically ill with pre-existing lung disease, even if they survive a serious coronavirus infection, are likely to be left with even further reduced lung function and poorer quality of life.

Unlike a localized disaster – most memorably Hurricane Katrina, in New Orleans in 2005, where healthcare decision-making received intense scrutiny and prompted legal action – we are experiencing a global, acute healthcare emergency that may require historic moral and ethical decisions that impact who lives and who dies. We will be rationing healthcare on the fly. Are we ready for that? As family members? As a community? As a nation? Are our hospices ready for the number of patients needing immediate, short-duration, and contagion-related end-of-life care?
Perhaps the most terrifying aspect of the coronavirus epidemic in countries where death has become frighteningly common is the loneliness of the death. Hospitals in the US are already limiting or even forbidding visitors. In Italy, seriously ill coronavirus patients are isolated from family and often die alone. Families are not allowed to have a proper burial, and not just due to restrictions on gathering – morgues have an enormous backlog to work through. That is certainly not what we would call a “good death” and not what those of us in the hospice care field want for any patient.

Trump has labeled himself a wartime president, declaring we are at war with an invisible enemy. "Now it's our time. We must sacrifice together, because we are all in this together, and we will come through together," he said. What is not stated – and what I am afraid will happen – is the wartime sacrifice analogy will extend to real lives lost. In an ironic twist of fate, it very well may be that the remnants of the Greatest Generation are once again on the front lines. Even down to the Baby Boomers, our nation’s elders will bear the brunt of the coronavirus disease, certainly, but likely the financial catastrophe surrounding the pandemic as well. (I wonder if the economic collapse will kill as many or more people than coronavirus does.)

The time is now to have discussions with our older/elderly parents and grandparents about the very real risk of serious illness and death from COVID-19. Wills need to be written and advance directives and durable powers of attorney completed now – before our loved ones hit the hospitals. This is not morbid; it is both pragmatic and necessary. If we emerge from this battle relatively unscathed, we are no worse off for having had the discussions and done the planning. Patients and families should be driving end-of-life care decisions. We owe it to our hospitals and healthcare workers not to overburden the system with trying to care for those who neither want nor would benefit from aggressive measures.

DETCOG, Broadband and Health

Can you hear me now? That phrase, made popular by Verizon Wireless in the early 2000s, epitomizes the frustration of rural America over lack of reliable cell phone coverage. To this day – despite what cell phone carriers like AT&T, Sprint, and Verizon advertise – coverage in many areas (including at my house inside the Lufkin, Texas city limits) is suboptimal. AT&T’s answer? Just use WiFi calling! That may work for me; I have adequate internet access. But what about the majority of deep East Texans? More than just being an inconvenience, poor cell phone coverage and inadequate broadband access are harming our health.

Broadband is the infrastructure and information technology network that delivers high speed connectivity to the internet. Think of broadband as a pipeline of information. As with any pipeline, the rate of flow (water, gas, data, etc.) can depend on the number of users, time of day, and reliability of service. But you have to be able to connect to the pipeline.

In the early days, the internet was accessed through slow, often expensive dial-up connections. Today, high speed or broadband internet access is via DSL (or Digital Subscriber Line), fiber-optic, wireless, cable, and satellite services, often bundled with phone and TV subscriptions.

Broadband access is about more than faster access to Facebook and Instagram. Increasingly, reliable and high-speed internet access is important for community health. The Federal Communications Commission (FCC), which is responsible for regulating the radio, television and phone industries, established a Connect2HealthFCC Task Force to raise consumer awareness about the value of broadband in the health and care sectors. You may know about heart-healthy diet and recipe apps and wearable fitness trackers, but did you know that we now have medical devices like pacemakers, defibrillators, glucose monitors, insulin pumps, and neuro-monitoring systems that can utilize wireless technology to control or program a medical device remotely and monitor and transmit patient data from the medical device to the healthcare team? Those without internet access can get delayed and inadequate care.

Maps showing lack of broadband coverage look just like maps of poor, rural America where healthcare is also lacking. In Kentucky, for example, the same areas where higher rates of lung cancer are seen are those with limited broadband access. These county-by-county maps are similar to what we see in deep East Texas with cancer deaths and health outcomes. This does not mean that lack of broadband access causes lung cancer, obviously! But the social determinants of health (such as education level and income) that are associated with smoking, lung cancer, heart disease, obesity, and overall health outcomes, are more pronounced in areas with limited broadband access.

So how could access to broadband increase the health of a community? The FCC believes that “broadband-enabled technology solutions can help us meet the health and care challenges of today and tomorrow by connection people to the people, services and information they need to get well and stay healthy.” Possible solutions that are especially important in deep East Texas include telehealth and telemedicine for improved access to physicians and specialists (including mental health services), health information technology and access, fall detectors, pharmacy connectivity, personal health data upload capability, and connectivity to hospitals and emergency rooms. With a growing and aging population compounded by a shortage of primary care physicians nationwide estimated in the tens of thousands –especially pronounced in rural areas – remote connectivity options for healthcare become even more important.

The Deep East Texas Council of Governments (DETCOG), under the leadership of Executive Director Lonnie Hunt, recently received a report titled Deep East Texas Broadband Growth Strategy, which detailed the potential economic growth (10,300 new jobs and $1.4 billion in GDP growth over 10 years) and growth in median household income associated with near complete broadband access, a loft goal. In IT, education, and telehealth alone, investments have the potential to impact the region with 2,500 jobs and $300 million in GDP over the next ten years.

DETCOG’s goal is to support development of a regional fiber optic-based broadband network throughout its twelve-county region. They hope to do this through creation of a non-profit or other entity that would manage the project, bring the necessary partners together to accomplish the goals, and oversee planning, financing, and implementation of the regional broadband network. Full implementation realistically will cost hundreds of millions of dollars. But it doesn’t have to all come at once.

In February, with support from the TLL Temple Foundation, DETCOG started the process to contract with a major law firm with offices in Washington, DC, to create an entity to manage broadband in East Texas. Funding such an entity and project will not be easy. Other COGs have tapped into grants like the FCC’s Rural Health Care Program, which provides funding to eligible health care providers for telecommunications and broadband services necessary for the provision of health care. Electric and telephone cooperatives, public utilities, internet providers, local, state, and federal entities, and foundations can and should play a role.

Do you hear me now? We must support DETCOG’s vision for a fiber optic network for all of deep East Texas. This will be a long term project requiring many players, both public and private, to accomplish. We need – we must have – high-speed broadband access in our entire region for jobs, for the economy, and for our health.

An Accurate Census – Our Health Depends on It!

When I was a skinny, naïve teenager, I worked the summer of 1980 for the US Census Bureau going door to door, pencil in hand, filling out census forms. Or rather, I went trailer park to trailer park in the outskirts of Odessa, Texas, where I was assigned to work. Do you know how many pit bulls and Doberman pinschers live under the steps of trailer houses in West Texas? I do. Fortunately, that was not one of the census questions.

The US Census counts each resident of the country, where they live on April 1, every ten years ending in zero. The count is mandated by the Constitution to determine how to apportion the House of Representatives among the states.  The US has counted its population every ten years since 1790. Households will be able to respond to the 2020 Census online, over the phone, or through a paper questionnaire. Results are anonymous and confidential; answers cannot be used against you by any government agency or court.

My appreciation for the US Census has grown tremendously since my days walking trailer parks. Far beyond being a simple head count, an incredible $1.5 trillion in federal dollars are distributed according to census counts. Myriad local and state governments, businesses, and community groups rely on US Census data to determine needs, guide investments, provide services, and lobby for state and federal funding.  If the count isn’t accurate, the distribution of funds isn’t fair. We have one shot every ten years to get it right.
Healthcare in particular has much at stake if the US Census does not get accurate information. As I love to mention, the healthcare sector drives our local economy. The State of Texas cannot ignore the healthcare sector either. Elena Marks, president and CEO of the Episcopal Health Foundation, states, “No sector is as dependent within the state budget in drawing down federal funds than the health sector, and those funds are based on population that's determined by the Census. Health clearly stands the most to gain, and the most to lose if there's an undercount.”  In fact, experts estimate that a 1% undercount in the Census could cost Texans about $280 million per year for health programs alone. Current forecasts predict anywhere from a 4%-8% undercount in Texas.

From political representation to federal funding for clinics, Medicaid, the children's health insurance program and much more, a complete and accurate Census count is crucial for community health – especially for low-income and vulnerable populations like many in deep East Texas.  The $1.5 trillion in federal money guided by census data helps fund the Children’s Health Insurance Program (CHIP), Medicaid, Medicare, the Supplemental Nutrition Assistance Program (SNAP), the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC), and community health centers funded through the Health Resources and Services Administration Health Center Program. Indivar Dutta-Gupta, co-executive director of the Center on Poverty and Inequality at Georgetown Law, notes that the groups that tend to be undercounted at the highest rate, unsurprisingly, are also the ones that would probably most benefit from greater access to and provision of health care and coverage.

The Census is also fundamental for population health data, including calculation of death rates, birth rates, and fertility rates.  A recent journal article titled Census 2020—A Preventable Public Health Catastrophe  points out that population counts provide denominators used to derive disease prevalence and rates. Inaccurate counts limit our ability to understand and track disease over time. If we cannot accurately stratify our populations by social factors such as education and race/ethnicity, we cannot assess their relationships to health.  Rural populations with spotty Internet connectivity are also likely to be undercounted.  Simply put, if we can’t measure social disparities in health, we are hindered in working to reduce them. Given our history of hurricanes, we need to understand that a flawed Census will compromise efforts to track and effectively manage natural disasters and emergent public health threats (coronavirus?), which require geographically focused provision of food, water, and shelter.

Lately, it seems as if politics gets in the way of everything. We must understand that federal dollars follow people. More people counted equals more funding coming our way. Whether or not we like with the ways those dollars are raised or spent, we should all agree that we deserve our fair share of whatever dollars are distributed. An accurate US Census is something we should all be able to count on and get behind!

Vaping Dangers are Frightening

Over the last few months, a rapid rise of vaping related acute lung disease has come to light. Both the CDC and the Food and Drug Administration (FDA), which regulates electronic nicotine delivery systems (ENDS, which includes products known as “e-cigarettes”), are actively engaged in investigating this outbreak, which some are calling an epidemic.  Certainly, vaping is epidemic among our youth.

As of the end of September, the number of confirmed or probable cases of life-threatening vaping-related lung disease has risen to 805 across 46 states and the US Virgin Islands. About three-quarters of the reported cases are male; nearly 4 in 10 are age 21 or younger.   Most importantly, all reported cases have a history of e-cigarette product use or vaping. Patients often require ICU and ventilator support. Thirteen people have died so far.

Authorities don’t know which chemical(s) are responsible for these vaping-related illnesses. An early idea was that only illicit THC products (black market marijuana oils) were to blame, but this evidently is not the case. Yes, these illnesses are more prevalent among THC vapers than users who self-report using only nicotine products, but vapers who don’t use THC are also getting sick. Vitamin E acetate is also being considered as a potential cause, but no single chemical has been consistently identified in all of the samples tested. At the present time, no particular device, brand, flavor or substance has been definitively linked.

According to the Centers for Disease Control and Prevention (CDC), symptoms of lung injury reported by some patients in this outbreak include  cough, shortness of breath, and chest pain, nausea, vomiting, or diarrhea, fatigue, fever, or abdominal pain. These symptoms usually have a rapid onset over a few days, but some patients have reported that their symptoms developed over several weeks. A lung infection does not appear to be causing the symptoms. NPR reports that in all confirmed cases, patients reported vaping within 90 days of developing symptoms, and most had vaped within a week of symptom onset. 

What should you do?

If you vape, stop. There are other ways to control nicotine addiction. Playing Russian roulette with your lungs is not smart and not cool. Certainly, anyone who vapes should not buy products off the street or add any substances, like THC or CBD oils.  If you have recently vaped and you have symptoms, see a healthcare provider, and let them know of your concern. They can notify the health department or CDC if necessary.

Vaping is not a harmless fad. Our lungs are elegant, fragile, life-giving organs that don’t react kindly to smoky chemicals, whatever the source. The acting head of the FDA admitted recently in testimony before a House subcommittee that the FDA “should have acted sooner” to contain the youth vaping epidemic.  And the CEO of Juul, maker of vaping products that targeted kids with enticing flavors like mango, grape, and strawberry lemonade, stepped down amid intensifying scrutiny of the brand’s marketing practices.  His replacement, unfortunately, is a seasoned tobacco executive, so don’t expect Juul to give up the fight. Too much money is at stake.

But our kids’ health and future is at stake as well. We must remove flavored e-cigarettes from the marketplace. And any marketing practices that target kids with addicting and dangerous products are unacceptable. E-cigarette products flooded the marketplace and were never appropriately reviewed. Frankly, the FDA dropped the ball on this, and people are dying as a result. Finally, until and unless sales to kids can be prevented, online sales of e-cigarettes should be stopped.

Let’s hope our federal agencies can act quickly and forcefully both to identify what is causing these illnesses and deaths and to regulate access to e-cigarette products. If the federal government won’t act, our state legislators should. The health and safety of our kids is at stake.

Achieving Equitable Cancer Care Access in Texas

Much is known about what influences the health of a community, including individual health behaviors as well as social and economic determinants of health.[1] Health equity has been defined to mean that everyone has a fair and just opportunity to be as healthy as possible.[2] Being un- or under-insured puts people at serious disadvantage when it comes to access to healthcare and potential for positive health outcomes.

The Affordable Care Act (ACA, or Obamacare) provides an opportunity for states to expand health coverage to low-income families through the Medicaid program. Multiple recent analyses demonstrate that Medicaid expansion is having an especially positive impact in rural areas in expansion states.[3] Many expansion studies point to improvements across a wide range of measures of access to care.[4] Finally, research shows that Medicaid expansions result in reductions in uninsured hospital or other provider visits and uncompensated care costs, whereas providers in non-expansion states have experienced little or no decline in uninsured visits and uncompensated care.[5]

Texas is one of thirteen states that has chosen not to expand Medicaid. The majority of states not participating in Obamacare expansion are in the Deep South,[6] and these states are also the states in the lowest quintile in overall health as ranked by United Health Foundation.[7] (The State of Texas ranks 37th in overall health in the United States.[8])

That’s not to say the State of Texas doesn’t spend a lot of money on healthcare. According to the Comptroller’s office,[9] healthcare spending represents nearly half the state budget - $42.9 billion in fiscal 2015 – spread across various agencies. Seventy percent, or $30.3 billion, went to spending for Medicaid and CHIP. That spending also includes direct support of various institutions.

For example, the University of Texas MD Anderson Cancer Center, which markets itself heavily as “the nation’s top hospital for cancer care for 14 of the past 17 years”[10] and “one of the nation’s top two hospitals for cancer care every year since the [US News & World Report America’s Best Hospitals] survey began in 1990,”[11] has an operating budget of $5.2 billion and over 20,000 employees.[12] Of that $5.2 billion, 4% - $210.1 million – is general revenue appropriated by the State of Texas.[13]

As a radiation oncologist, I practice in the shadow of MD Anderson, even though I live 120 miles north of the Texas Medical Center. It is a long shadow. That shadow is often comforting, like an old friend. But it is a shadow that discriminates with strict financial barriers and selective insurance contracts. There is a joke in the medical community that the first and most important biopsy you get at MD Anderson is a wallet biopsy – no pay, no play.

MD Anderson does participate in the Texas Medicaid Program and has a financial assistance program for cancer patients who meet residency and certain financial eligibility requirements.[14] Uncompensated care in fiscal year 2018 at MD Anderson totaled only $170.4 million,[15] certainly less than the $210.1 million appropriated by the State of Texas and less than 3.3% of their operating budget. Modern Healthcare looked at the proportion of charity care provided by the country's 20 biggest not-for-profit hospitals and hospital systems by revenue in 2015 and 2016 and found that the average proportion of operating expenses devoted to charity care was 5.21%.[16]

In fiscal year 2017, MD Anderson provided care to a mere 420 people who primarily had no insurance and who met their financial assistance program requirements.[17] That is barely one unique patient a day at an institution that sees 141,600 patients a year.[18] MD Anderson’s first core value[19] is: “Caring: By our words and actions, we create a caring environment for everyone.” But not everyone gets in.

MD Anderson has a huge and wealthy donor base as well. As just one example, their Moon Shots Program,[20] launched in September 2012, has received $464 million in private philanthropic commitments so far.[21] In 2018 alone, 9.5% of their budget – $498 million – came from restricted grants and contracts and philanthropy.[22]

Let me say, I am in awe of the research that comes out of MD Anderson. They have every right to be proud of their #1 ranking and of having a Nobel Prize-winning scientist on staff.[23] The knowledge that comes out of an institution that sees 141,600 patients a year is staggering. The training of health care providers, including at Harris Health System facilities, is excellent. But I grieve when Texas residents who need the care MD Anderson can provide are prevented from going there.

Ultimately, quality health care is not just about rankings; it must be about access to care as well. As a state-supported institution, MD Anderson needs to loosen its requirements for providing uncompensated care and be willing to negotiate and accept reasonable contracts with insurance providers, especially Medicare Advantage and Obamacare plans. After all, a hospital cannot be “best” if it isn’t best for all. (That is not to let insurance providers off the hook. I have no doubt they shy away from contracting with MD Anderson, knowing less expensive care can be had elsewhere.)

The State of Texas should require minimum levels of charity care and insurance plan participation when hundreds of millions of state dollars are being allocated. State legislators, in view of the substantial economic[24] and health[25] benefits associated with the expansion of Medicaid, should invest in increased health insurance coverage in Texas via the Affordable Care Act. And finally, health care ranking organizations like US News & World Report should include access to care and charity care metrics when ranking hospitals.[26] These are the right – and equitable – things to do.

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[1] https://www.angelinaradiation.com/blog/county-health-where-do-we-begin

[2] https://www.rwjf.org/en/library/research/2017/05/what-is-health-equity-.html accessed 7/5/19

[3] https://www.kff.org/medicaid/issue-brief/the-effects-of-medicaid-expansion-under-the-aca-updated-findings-from-a-literature-review-march-2018/ accessed 7/5/19

[4] https://www.kff.org/medicaid/issue-brief/the-effects-of-medicaid-expansion-under-the-aca-updated-findings-from-a-literature-review-march-2018/ accessed 7/5/19

[5] https://www.kff.org/medicaid/issue-brief/the-effects-of-medicaid-expansion-under-the-aca-updated-findings-from-a-literature-review-march-2018/ accessed 7/5/19

[6] https://familiesusa.org/product/50-state-look-medicaid-expansion accessed 7/4/19

[7] https://www.americashealthrankings.org/learn/reports/2018-annual-report accessed 7/5/19

[8] https://www.americashealthrankings.org/learn/reports/2018-annual-report/findings-state-rankings accessed 7/5/19

[9] https://comptroller.texas.gov/about/media-center/news/2017/170131-health-care-spending.php accessed 7/3/19

[10] https://www.mdanderson.org/newsroom/md-anderson-ranked-no-1-for-cancer-care-in-national-survey.h00-159226512.html accessed 7/1/19

[11] https://www.mdanderson.org/patients-family/becoming-our-patient/why-md-anderson.html accessed 7/1/19

[12] 2019 Quick Facts report of fiscal year 2018 data https://www.mdanderson.org/documents/about-md-anderson/about-us/facts-and-history/quick-facts.pdf accessed 7/1/19

[13] 2019 Quick Facts report of fiscal year 2018 data https://www.mdanderson.org/documents/about-md-anderson/about-us/facts-and-history/quick-facts.pdf accessed 7/1/19

[14] https://www.mdanderson.org/about-md-anderson/business-legal/office-of-health-policy/uncompensated-care-program.html accessed 7/5/19

[15] 2019 Quick Facts report of fiscal year 2018 data https://www.mdanderson.org/documents/about-md-anderson/about-us/facts-and-history/quick-facts.pdf accessed 7/1/19

[16] https://www.modernhealthcare.com/article/20170424/BLOG/170429935/how-much-charity-care-do-not-for-profit-hospitals-provide accessed 7/7/19

[17] https://www.mdanderson.org/about-md-anderson/business-legal/office-of-health-policy/uncompensated-care-program.html accessed 7/4/19 How does MD Anderson serve the low-income population?

MD Anderson has a long tradition of providing quality cancer care for many low-income residents of Texas.

In FY17, MD Anderson provided care to 420 people who primarily had no third-party insurance and who qualified for partial or full financial assistance under MD Anderson’s patient financial assistance program. The estimated unreimbursed cost associated with these patients was $17.5 million.

In addition, MD Anderson provided care to 3,717 people whose primary source of insurance coverage was a state or locally sponsored governmental program such as Medicaid, CHIP, Harris County Hospital District or other Texas county-specific indigent program. The estimated unreimbursed cost associated with these patients was $12.5 million.

MD Anderson’s combined estimated unreimbursed costs for these two categories of patients in FY17 was $30 million.

For the past 23 years, MD Anderson also has provided cancer services at Lyndon B. Johnson General Hospital for low-income Harris County residents. This program is staffed by MD Anderson faculty physicians, nurses and others at an annual cost to MD Anderson of $4 million. The MD Anderson program at LBJ General Hospital more than 1,000 new patients and had more than 12,000 follow-up patient visits in FY13.

[18] https://www.mdanderson.org/documents/about-md-anderson/about-us/facts-and-history/quick-facts.pdf At MD Anderson, everything we do revolves around our patients. In Fiscal Year 2018, more than 141,600 people sought the superior care that has made MD Anderson so widely respected — 45,000 of whom were new patients.

[19] https://www.mdanderson.org/about-md-anderson.html accessed 7/4/19

[20] https://www.mdanderson.org/cancermoonshots.html accessed 7/5/19

[21] https://www.mdanderson.org/documents/about-md-anderson/about-us/facts-and-history/quick-facts.pdf accessed 7/5/19

[22] https://www.mdanderson.org/documents/about-md-anderson/about-us/facts-and-history/quick-facts.pdf accessed 7/5/19

[23] https://www.mdanderson.org/newsroom/nobel-prize.html Jim Allison, PhD

[24] https://www.perrymangroup.com/media/uploads/reports/perryman-economic-benefits-of-expanding-health-insurance-coverage-in-texas-03-2019.pdf accessed 7/7/19

[25] https://www.kff.org/medicaid/issue-brief/the-effects-of-medicaid-expansion-under-the-aca-updated-findings-from-a-literature-review-march-2018/ accessed 7/5/19

[26] Why did U.S. News adjust for socioeconomic status? In 2014, the National Quality Forum, an influential standard-setting body, recommended considering socioeconomic status in certain evaluations of hospital performance. Since our objective is to enable a patient who is consulting our ratings to make apples-to-apples comparisons among hospitals, it follows that we should adjust for patient attributes such as age, sex and socioeconomic status. https://health.usnews.com/health-care/best-hospitals/articles/faq-how-and-why-we-rank-and-rate-hospitals accessed 7/4/19