Letter to The NonMask Wearers

This letter was submitted to us by a member of the hemophilia community, who wishes to remain anonymous. We promised to print it, and we offer our deepest condolences on her loss.

Dear non-mask wearers,

You know that the government of New Mexico mandated that we need to wear masks for a reason. The reason is to protect not only you but your family as well.

To the rebel who decided that it was not important to wear a mask and that it was okay to put other families at risk, you tore apart MY family. My dad, who had moderate to severe hemophilia A, contracted COVID-19, and despite the many trials and tribulations that he went through he was not able to overcome it.

His parents were told that he was not going to live past being a teenager. He defied all odds and lived to be 61. He had a lot of problems in his life, but overcame those as well. He had blood transfusions which gave him HIV and hepatitis C. He was able to beat both of those. He was able to get HIV and hepatitis C to an undetectable level. He also was able to raise his only child, me, pretty much by himself. He was able to meet his grandchildren and play a big part in their lives.

He became sick with bronchitis for some time and then had an allergic reaction to one of the antibiotics. He went to the hospital for extreme pain in his leg due to the antibiotic. They tested him for COVID-19, and he tested positive. He was life-flighted to a different hospital and put in the ICU. While in the hospital, they did a CT scan and found that he had two bleeds, one in his back and one in his leg. Later, he was also diagnosed with bleeding in the belly by venous bleeds which were really hard to contain. He continued to bleed so much that medics gave him six units of blood. He got to the point where he was combative because of him being in so much pain that he refuses to let anyone touch him. I remember how I use to have to tiptoe around the house because he would have a bleed and the vibrations would just hurt him so bad. He was placed on a ventilator and lapsed into  a coma. His body just eventually gave out on him.

Due to COVID-19, I was unable to see him in the hospital, but I was able to talk to him on the phone. I have to say this was maybe the hardest part in my whole life because I was unable to see him in person. I never realized how important that last moment was to be able to see them and be able to tell him how important and loved he really was. Growing up, we did not say that we loved each other very much. I just wish that one last time I would be able to hold his hand, tell him that I love him, and to be able to kiss him on his cheek.

This is what you risk when you do not wear a mask. You not only don’t protect yourself, but you risk infecting other families as well. My dad was too young to die but because someone who was so inconsiderate to not wear a mask got my dad sick, and he died.


A grieving daughter

The Hemophilia Community: Unmasked

Last night Doug and I watched the 2019 movie “Midway,” which had spectacular CGI aircraft battles. We somberly recognized the extraordinary sacrifices made by the young men who served. This after we also watched the Ken Burns’ series on Vietnam on Netflix. Different eras, different situations but what remains constant is the incredible sacrifice of Americans to serve and protect fellow Americans.

Which is why it’s hard for me to comprehend why some Americans are resistant, almost militant, to wearing a mask in public to protect against coronavirus. Even more, why anyone in the hemophilia community would resist. Of all people, we know what it’s like to be caught in an epidemic, to be victims of public health breaches. We’ve had horrific sacrifices, and those of us who escaped HIV by a year or so are forever grateful and respectful to those who lost their lives.

But lately on Facebook some hemophilia colleagues questioned what good would wearing a mask do, and others defiantly claimed they would not wear one in public. “I’m an American,” one woman wrote; she had worked for a hemophilia specialty pharmacy. “It’s my constitutional right not to wear one.” This, in white letters on a screaming red background. Another, an industry rep in Florida, wrote that he didn’t know anyone with COVID, thought it was overblown, didn’t see any difference in life in his corner of the world, so he was not going to wear a mask in public.

Beyond the actual act of going in public without a mask was the “unmasked” attitude: I’m an American and I’m doing whatever I want.

This led to a barrage of replies and comments about what it means to be an American, especially that it’s not always “about you.” The woman replied, “You do you and I’ll do me.” An extremely selfish comment to make during a pandemic, with over 125,000 Americans dead in a few months (more than twice the number that died in nearly two decades of fighting in Vietnam).

I kept thinking about our Hemophilia Holocaust. HIV is much less contagious than COVID. You can only catch it in certain ways. COVID is incredibly contagious. Yet during the HIV era, you did not hear from people screaming about their rights to do what they wanted, and not be inconvenienced by taking precautions. It made me wonder, what if we substitute the word mask with condom?

“I’m an American and it’s my constitutional right not to wear a condom if I don’t want to!” True, but what do you risk? Disease, unwanted pregnancy, spreading disease to others. Spreading the disease to babies. You never hear anyone talk like that about condoms. Why are we even applying constitutional rights to something that is about protecting public health? This was never done before. Is it because it’s an election year? Has politicizing a public health crisis changed the way people view public health now?

Well, Florida is now being considered an epicenter of COVID-19. It had almost 10,000 new cases in a single day, the highest in the country. Florida is going backwards, because it reopened, and people did not take precautions. A good friend of mine there took advantage of the reopening, got together with her family for the first time in months at a restaurant for just a couple of hours. Almost everyone got COVID, and some are very sick. She has completely changed her mind about wearing masks; it’s now imperative.

And 36 states have escalating cases. My state, Massachusetts, is holding steady, but we should be declining, with all that we know about this virus. Look at New Zealand: it’s considered virus free now, because it locked down, people wore masks and social distanced, and they united as a country to fight this common enemy.

Why is America now the leading country with the highest number of cases of COVID? Because so many are not taking precautions, like wearing a mask. A simple sacrifice that certainly does not infringe on any of your freedoms. It’s a lot less inconvenient than using a condom. And the simplest of sacrifices compared to those who fought–and died–for our freedom.

To be an American to me means honoring the sacrifices made by those who died protecting our freedoms: in World War II, in Vietnam, the doctors and nurses who have died recently, the patients and yes, babies, who have died. Remember the famous words: It’s not about what your country can do for you, but about what you can do for your country. Wearing a mask protects you, but it’s not about you. It’s about protecting others, stopping the spread. Sacrificing a slight inconvenience to help preserve the common good. Uniting and adopting known ways to stop the spread of this virus. With the freedom and rights of being an American come responsibilities.

What does it mean to you to be an American in a pandemic? What have you learned from the HIV holocaust? What can you do to stop the spread of this insidious virus? Some things to really ponder over the upcoming fourth of July weekend. Appreciate what our medical community is enduring as more people require hospitalization; empathize with those who have lost loved ones. Watch “Midway,” “Pearl Harbor” or some other good war movie. You will see what real sacrifice is, and what being an American really is about.

Politics and Pandemic

Watching the rally in Tulsa, Oklahoma this past weekend makes for a chilling comparison to 1918. Current concerns about crowding and COVID-19 were fears about the Spanish influenza then. And like the political rally in Tulsa, Philadelphia hosted a huge parade, politically motivated, to attract thousands of people, even though the city was besieged by the pandemic. This influenza was virulent, hostile and swift. Why was a parade scheduled?

Parade of September 28, 1918

Politics… squelching the voice of science, muzzling the press, and placing political agendas above the safety of citizens. In many ways, we are facing similar challenges, with a public unsure of who to believe. The government? The scientists? The press? In 1918, schools, churches and businesses were shut. People wore masks and practiced social distancing. But it was also wartime, and the drafting of so many young men and crowding them into barracks and hastily made tents during the previous winter helped spread a virus that would kill four times as many Americans as soldiers in the World War II–the Great War.

John M. Barry, in his book The Great Influenza, describes a Philadelphia in 1918 as a steamy, overcrowded city of 1.7 million, with slums. A breeding ground for epidemics.  And for political machines: corruption was as widespread as the virus.

On September 7, 1918, 300 sailors arrived from Boston, where nearly 1,000 had already died. Philadelphia Public Health Director Dr. Wilmer Krusen did not quarantine the sailors. He announced that the ones who died did not die of influenza.  Why would he deliberately lie? Philadelphia had a quota to sell so many Liberty Bonds, to raise money for the war effort. The parade would kick this campaign off. Local doctors urged Krusen to cancel the parade. Influenza was spread in crowds.

By September 15, the virus had made 600 sailors sick enough to be hospitalized. On September 17, 5 doctors and 14 nurses in that same civilian hospital took ill. Krusen publicly denied that influenza posed any threat to the city, feared that taking any such steps might cause panic and interfere with the war effort. The parade went on.

Two days after the parade, Krusen announced, “The epidemic is now present in the civilian population.” Krusen, a political appointee, failed in his role as doctor and health commissioner.

All over the country, as young men gathered to report for war, they fell ill. Dr. William Welch, brilliant head of a new committee to handle the pandemic, wrote to the army to quarantine the new recruits. He knew that one of the best measures to stop contagion is avoiding crowding.

Most army officials ignored the warning. On August 8, a Col. Hagadorn took over Camp Grant. He allowed overcrowding. In six days the hospital went from 610 occupied beds to 4,102. From there, 3,108 troops took a train to Georgia—where 2,000 arrived ill. On October 8, Hagadorn committed suicide.

In Philadelphia, just 72 hours after the parade, every hospital bed in Philadelphia was filled with sick people. Nurses were dying. Corpses lay about everywhere.

But politics still overshadowed the truth. On October 5, doctors reported that 254 people died that day from the epidemic, and the papers quoted public health authorities as saying, “The peak of the influenza epidemic has been reached.” Then 289 Philadelphians died the next day, and the next day 428 people died. Dr. Krusen said, “Don’t get frightened or panic stricken over exaggerated reports.”

47% of deaths in US now were from the Spanish flu.

The civilian health care system was in trouble, as the government took as many doctors and nurses as possible for the war effort in Europe. Lab animals were unavailable for testing vaccines. Masks, protective gear was scarce. Everything went to equipping the war machine.

And politics went on. Back on January 1,1918 Tammany Hall regained control of New York City. Patronage determined jobs but most jobs in the Department of Health were not patronage positions. No problem. Tammany began to smear the best municipal health department in the world. Division chiefs were fired, and highly respected physicians on the advisory board were removed. The new health commissioner, Royal Copeland, was dean of a homeopathic medical school, and not even a doctor of medicine! Perhaps he was appointed because the bosses knew he would not cause trouble. They were right.

“The best municipal public health department in the world was now run by a man with no belief in modern scientific medicine and whose ambitions were not in public health but in politics,” writes Barry.  

On September 15, 1918, New York City’s first influenza death occurred. Commissioner Copeland assured the public “that the disease is not getting away from the control of the health department but is decreasing.” Eventually, the death toll reached 33,000 for New York City alone.

And what of the president?

Wilson took no public note of the disease. From neither the White House nor any other senior administration post would there come any leadership, any attempt to set priorities, any attempt to coordinate activities, any attempt to deliver resources,” writes Barry. “No national official ever publicly acknowledged the danger of influenza.”

In Philadelphia, the government not only did nothing to help, it lied to the public that the virus was not anything to worry about, when death was everywhere. During the week of October 16, 4,597 Philadelphians died from influenza or pneumonia. The wealthiest families who controlled the charities got to work, and brought aid, when the government didn’t. From corpse transport, to soup kitchens, they pitched in personally and with volunteers.

And the press was distorting the news, but they were muzzled as well by the national government, for the “war” effort, but it went far beyond that. “People could not trust what they read. ‘Don’t Get Scared!’ was the advice printed in virtually every newspaper in the country, in large, blocked-off parts of pages,” Barry notes. Politics interfered with freedom of the press perhaps greater than in any time in history.

Barry goes into great detail about the virus, and the many attempts to create a vaccine. Ultimately, the virus began to die out. There was a second wave, and even a third. Numbers spiked well into 1920.

He postulates on an interesting outcome, though there were many as a result of the feverish pace to identify the culprit, the source and a cure.

President Woodrow Wilson became very ill just before the Paris peace talks in 1920, which would lead to the Treaty of Versailles, to dictate the terms of surrender for Germany. Wilson and his American team had a set of standards and policies that were nonnegotiable. Did Wilson contract the virus? Was he that ill?

“Abruptly, still on sickbed, only a few days after he had threatened to leave the conference unless Clemenceau yielded to his demands, without warning to or discussion with any other Americans, Wilson suddenly abandoned principles he had previously insisted upon. He yielded to Clemenceau everything of significance,” Barry writes.

Four months later Wilson suffered a debilitating stroke. Was it from hardening of the arteries, or from the Spanish flu, which was known to affect people’s minds? What is known is that the Paris peace treaty helped foster the economic hardship, rising nationalism, and political instability that helped the rise of Adolf Hitler.

Barry ends his excellent 2004 book with prophetic statements. Think about these as we endure our own current pandemic.

• “The CDC estimates that if a new pandemic virus strikes, then the U.S. death toll will most likely fall between 89,000 and 300,000.”

• “An outbreak would quickly fill beds in intensive care units, so resources need to be available”

• “Public health officials will need the authority to enforce decisions, including ruthless ones.”

• “Officials must have in place the legal power to take extreme quarantine measures.”

• “But there is another lesson from 1918 that is clear. It is also less tangible.”

It involves the use of fear as a tactic: through the media and the way our elected officials deal with the public.

Pandemic: From Kansas to the World

John M. Barry, in his excellent book The Great Influenza, notes that it cannot be proven that the 1918 “Spanish” influenza originated in Kansas, but there is circumstantial evidence, and it sure didn’t originate in Spain. Why then was this influenza, which would kill an estimated 25-50 million people globally christened this? Because the press was muzzled in the US, mostly due to the war, but also because President Wilson did not want fear of the flu to keep young men from enlisting and serving their country. More would die at home, of the flu, than on the battlefield: 675,000 versus 115,000. A staggering difference. Only Spain, which was neutral during the war, kept its press free and open, and it warned of this deadly disease. So, it was dubbed the “Spanish flu.”

From one known case the influenza virus traveled to Camp Funston in Kansas in early 1918. Within three weeks 1,100 troops at Funston were hospitalized. From there it traveled fast and far. US troops were shipped to Boston. It spread quickly there. Troops were then shipped off to Europe: nearly 40% of the two million American troops who arrived in France disembarked at Brest, France. By early April, the flu had arrived there; later that month, it hit Paris and Italy. The British army recorded their first cases mid-April, and then… a full scale, raging pandemic. Even German troops in the field reported the devastating effects. General Ludendorff actually blamed the loss of one military initiative on the flu!

On June 30, 1918, the British freighter City of Exeter docked in Philadelphia, carrying influenza. But Rupert Blue, the civilian surgeon general and head of the U.S. Public Health Service, issued no instructions to the maritime service to hold influenza-ridden ships! Dozens of ill crew members were taken immediately to Pennsylvania Hospital, seemingly with pneumonia. When they died, two physicians publicly stated to newspapers that they had not died of influenza. They were lying. Why would health officials lie?

Politics. “Those in control of the war’s propaganda machine wanted nothing printed that could hurt morale. The disease did not spread,” Barry writes. So the disease continued to decimate soldiers as no war could. Soldiers continued to be shipped out, and with them, the real enemy–influenza.

All that summer of 1918 England, Scotland, and Wales reported surges in cases, and deaths. Denmark, Norway, Holland and Sweden. After a military transport arrived in Bombay, India, the number of cases soared. The virus hitched a ride on the railroads of India, and soon it reached Shanghai. New Zealand and Australia in September; and Barry reports that 30% of the population of Sydney became ill. But the disease was rather mild still; in the French army, fewer than one hundred deaths resulted from 40,000 hospital admissions. The journal The Lancet (so named after the blood-letting device) published a report that perhaps this was not even influenza! The disease was fatal within 24-48 hours, which didn’t match what was known about influenza then. And it was noted that in Louisville, Kentucky, 40% of those who died were aged 25-35; usually the flu hits the most vulnerable: the very young, the very old and the sick. What was this disease?

True in 1918, as in today

Then, oddly, it was gone. On August 10, the British high command announced the end of the epidemic. Life started returning to normal. Churches opened, schools started. People stopped wearing face coverings, and avoiding one another.

But the virus was not gone. It had only retreated, quietly mutating, like a stealthy enemy revising its attack strategy. On the same day the British army declared the pandemic over, French sailors stationed at Brest were hospitalized with influenza and pneumonia in such vast numbers that they had to close the naval hospital. The influenza virus, like many other pandemics, was mutating. And it was mutating into a killer of unimaginable proportions.

Next week: The world at war, the treatments, the outcome.

1918: The Perfect Storm

The year 1918 became a perfect storm of war, disease, advanced medical science, leadership–and lack of leadership. A pandemic about to strike, with rich, fertile breeding grounds in army barracks as America geared up for war. A government that downplayed the pandemic; American medical experts at long last, after America had lagged so far behind in medical science compared to Europe. A nation afraid.

John M. Barry, in his book The Great Influenza, provides a thrilling look into the gathering storm. He writes that throughout the history of war, more soldiers would die of disease than in battle or of wounds. And war was already underway. World War I (called The Great War then) began in 1914. The US was famously isolationist, preferring to stay out of other countries’ problems. Even in 1915, when the Germans sank the Lusitania, President Woodrow Wilson wanted to remain neutral. Even in 1917, when Germany announced submarine warfare against neutral and merchant ships. But then came the Zimmerman note, where Germany proposed that Mexico join her in war against US. Wilson rose to leadership: he spoke of America as “born to exemplify the elements of righteousness derived from Holy Scripture.”

What followed next set the stage for enormous failings in America for the pandemic that would soon strike. A lockdown on freedom of the press: Wilson controlled freedom of speech; Attorney General Thomas Gregory instructed the Library of Congress to monitor what books people read. A New Sedition Act made it punishable by 20 years in prison to speak or write anything “disloyal, profane, abusive towards the US government.” States outlawed teaching German; sauerkraut was even renamed “Liberty cabbage.” Postmaster General Albert Sidney Burleson refused to deliver any periodical he thought unpatriotic or critical.

People were encouraged to turn each other in for being unpatriotic. Wilson virtually nationalized the railroad industry; forced factories to produce war materials. Wilson created a Committee on Public Information, which demanded 100% patriotism. Any song that hurt patriotism was banned. And the press was carefully monitored and allowed to print only carefully selected facts. Barry writes, “Fear was ‘an important element to be bred in the civilian population. It is difficult to unite a people by talking only on the highest ethical plane. To fight for an ideal, perhaps, must be coupled with thoughts of self-preservation.’” This would have a huge impact later, when the pandemic struck.

Meanwhile, the government also mobilized nurses and doctors into the army, leaving the civilian public health system weakened. Recall from last week that American medicine had only just finally become modernized, thanks to the establishment of the Johns Hopkins Institute. In 1914, there were only 140,000 physicians in US; and of them, only 776 served in military. Now, even the military medical system wasn’t very equipped. Congress did not give “a penny” to the army medical department. Barry cites one camp of 60,000 soldiers had no microscope.

Wilson did make a wise decision by asking the amazing Dr. William Welch and Johns Hopkins University to help with war-related research. Welch is often called the “Dean of American Medicine,” and had helped it become science based. He had been first dean of the Johns Hopkins School of Medicine and was also the founder of the Johns Hopkins School of Hygiene and Public Health, the first in the country–this would play a huge role in combatting a pandemic. Now at 67 years old, he was needed more than he could know. It seemed all his life was preparing for this moment. But on opening day of the school he founded, October 1, 1918, he felt ill and could not attend. He had just returned from examining a strange, devastating epidemic.

Dr. William Welch

And the war machine revved up: a shortage of nurses for civilian hospitals; the press muzzled; an army expanding from a few tens of thousands of soldiers to millions in a few months. And where to put them all? In huge camps, in tents, each holding 50,000 men. Ready to be shipped to Boston, and then to the world.

And with them was an uninvited volunteer that would kill more than the war itself, ready to take advantage of wartime, of the bitter cold winter, of lack of freedom of the press, the reduced civilian nurses and doctors… influenza. A pandemic during a perfect storm.

Next week: The pandemic.

HemaBlog Archives