May 2020

The Great Influenza 2: American medicine finally catches up

These are notes taken from John Barry’s excellent book The Great Influenza. It’s a fascinating study in what is still the worst pandemic in history to strike humans. There are so many comparisons one can make to what is happening now—although I see so many on social media drawing the wrong conclusions about pandemics and how to protect against their spread. The amazing thing about the Spanish flu of 1918 is how its arrival happened at a great confluence of science, medicine and personalities.

Barry writes that the revolution of modern science and medical science began as science focused on what to how. In other words, methodology, research, empirical evidence. For most of history investigators into science relied too much on reason, on their own minds. They could know something if their logic followed a sound premise. Their premises were based primarily on observation. For example, I recall reading in another book on medical history how infusing an irrational, out-of-control man with calf’s blood should make him calm, because a calf was gentle by nature. (Probably it calmed him, right to his death)

This belief in reason alone actually blinded us. For 2,500 years medicine made almost no progress. The Hippocratic texts relied on passive observation and active reasoning, not scientific testing method. Doctors believed that natural processes should not be interfered with.

But in 1798, experimentation and methodology started to take root. The English doctor Edward Jenner, after overhearing a milkmaid say that she couldn’t get smallpox because she had had the cowpox, experimented with cows, and found that exposure to cowpox immunized one. Though this had been known in China and India for years, what made this a stand-out was his methodology and rigorous testing.

But this was late to come to the US. Dr. Benjamin Rush in Philadelphia, one of our premier physicians, still applied the observation method. He was advocate of venesection! (Read: “bleeding”) Meanwhile Pierre Louis (of the French School 1800-1850) created for first time a database by comparing cases. Disease began to be seen as something that entered the body, and not as something wrong with the blood. We so take this for granted now, but then, this actually was not realized till the mid-1800s.

Paris was the medical Mecca then. In 1853 Dr. John Snow applied mathematics as an epidemiologist, observing the cholera outbreak in London, and gathering data by going door to door, and interviewing the families of the dead—and basically gave birth to public health. (He also used anesthesia on Queen Victoria, when she gave birth to her ninth and last child! And we know she is the carrier of the “Royal Disease” –aka hemophilia) Only in 1830, did physicians began using a microscope in Europe. The Germans used it the most. In fact, Dr. Jacob Henle was the first to formulate the modern germ theory.

Johns Hopkins

Medicine was evolving and not soon enough. And not fast enough in America. We lagged behind Europe in all things medical. But that soon changed.

In 1873 Johns Hopkins, American entrepreneur died, and left a trust of a staggering $3.5 million to found a university and a hospital. He and his trustees were Quakers, and they decided to model the new institution after German universities. It opened in 1876 and by 1914 the American medical science caught up to Europe.

And it was just in time. A viral juggernaut was about to strike the US, and then, the rest of the world.

Next week: the Spanish flu starts in Kansas.

The Great Influenza

I always believe we can learn so much from history, and that’s one reason I enjoy reading about history so much, especially medical history. This is incredibly relevant now, as the pandemic dominates the news, and our lives.

A few years ago, I read a great book called “The Great Influenza,” by John M. Barry (Penguin Books, 2004). I decided to reread it, since so many people on social media are making comparisons to coronavirus and the Spanish influenza pandemic of 1918, particularly in how our government is handling it.

Tonight, I just want to set the stage for the pandemic. It’s incredible to see how far we have come medically since the early 1900s.

First, know that the Spanish flu to this day remains the worst disease in history. Nothing can compare, not HIV, not COVID-19. From just 1918 to 1920 from 21-50 million would die from it. It’s estimated that 8-10% of all young adults then living may have been killed by it.  

What I love about this book is that it’s also the story of science, and how our thinking changes in response to a medical crisis. We’re watching that in action even now, as politicians, physicians, the nightly news and even our own friends now social media battle it out for what are the right approaches to take.

First—and this is incredible–medicine was not held in high esteem in the US. Barry reports that as late as 1900 only 20% of medical schools required a high school diploma! Almost anyone could call themselves doctor. Most medical students attended lectures, took one test, and never even saw a patient until they started practicing.

Barry notes that when Union Surgeon William Hammond stopped the use of violent purgatives (to rid the patient of “bad humors” like bile), he was court martialed and condemned by American Medical Association! No institution supported any medical research, and at Harvard, one professor of surgery admitted most medical students could barely write! Harvard president Charles Eliot realized the entire medical system had to be updated and improved.

And so began a movement to improve the American medical system. To whom did we look? Europe. The best medical institutions in the world were in Germany and France.

And so on September 12.1876, Johns Hopkins University was founded to change the way medicine was researched, delivered, and taught in America. If you watch CNN, you’ll note in the right hand margin that its daily statistics on COVID-19, including number of cases and number of deaths, is from Johns Hopkins University.

Thomas Henry Huxley

During the opening celebration, keynote speaker and English scientist Thomas H. Huxley, said, “Sit down before a fact as a little child, be prepared to give up every preconceived notion. Follow humbly wherever and to whatever abysses nature leads, or you shall learn nothing.”

It’s unfortunately not what many people are doing these days: accusations of misleading the public for political gain are tossed around from the CDC to the White House to news outlets, leaving us confused and anxious. Huxley would rather we listen and learn with open minds. And we can learn from the Spanish flu pandemic. To be continued next Sunday…

The Lost Crown

Two months into the pandemic, and I have read 18 books so far this year. And… I’ve watched a ton of movies on iTunes! But I love reading. If you need to wean your teens away from the TV and video games, look into some interesting books for young readers. Here’s a historical novel, labeled juvenile fiction, about Alexis (also called Alexei, or Aleksei) the prince who had hemophilia.

The Russian Royal Family

The novel takes place in Russia, in the early 1900s. From August 1917 until the night of July 4, 1918, the four Grand Duchess daughters of Tsar Nicholas II and Empress Alexandra Feodorovna alternate documenting their lives at their castle called Tsarskoe Selo, in St. Petersburg, and then under house arrest at Tobolsk and Ekatininburg, in Siberia.

Each with a different perspective and their own distinct personality, Olga, Tatiana, Maria, and Anastasia relate daily occurrences in a diary format filled with much conversation, and some personal opinions. The four young women mention their younger brother, Tsarevich Aleksei Nikolaevich, who had hemophilia, on almost every page. They also comment frequently on their three dogs (Jemmy, Ortipo, and Joy), the staff and servants, and possible suitors. While maintaining a strong familial bond, the four Grand Duchesses, known as OTMA, also express their minor irritations of living in close proximity, and just being young adults. They were under constant watch by the guards, who were part of the Bolshevik revolution that eventually took over the largest country on earth. They thought they would eventually be released and allowed to leave Russia. But fate had another destiny for them.

Hemophilia is frequently mentioned, though not in great detail. Due to his hemophilia, Aleksei nearly died in Spala in 1912. Later in 1917, he had a swollen and knobby ankle. His illness is as “violent and temperamental as a volcano.” Aleksei had frequent pain and bruises. He moved about on his three-wheeled cycle and his wheelchair, or Nagorny, his sailor nanny, carried him. He had pain, cramps, and a hematoma on his hip in 1917. He can’t walk, so is carried or would sit in a wheelchair. In 1918 he bumped his knee, which became swollen. As Tatiana explained, “Hemophilia is not a disease that simply vanishes.” No indeed; thanks to the girls’ great-grandmother, Queen Victoria, hemophilia became known as “The Royal Disease.”

The book includes a two-page map, a four-page cast of characters, a two-page Russian Words & Phrases, one page for a note about dates, six pages of Romanov family photos, a four-page Author’s Note, and a bibliography. In the epilogue the author notes that DNA testing of Skeleton Number 6, one of a grand duchesses in the larger mass grave that was eventually found, was a carrier of type B hemophilia.

The Lost Crown was written in 2012 by the award-winning author of young adult fiction Sarah Miller, 2012. Get it for your young reader, and maybe even for yourself!

Thanks to our colleague and contributing writer Richard Atwood, from North Carolina.

Happy Hemophilia Mother’s Day!

When two mothers meet, whether they know one another or not, there is an instant bond and understanding. Thoughts, feelings and words flow easily, especially when it comes to the subject of children and childbirth, in other words, being a mother. For example, a man I worked with for two years never shared much personally. I happened to meet his girlfriend in passing; our eyes locked, we introduced one another and in 15 intense but pleasurable minutes covered children (we each have three), names, what their births were like in detail, school, how to juggle work and children, our divorces, how we handled dating… if we didn’t have appointments to get to, we would have chatted all night!

Add to motherhood hemophilia, and you have the ingredients for potent emotional bonding glue.

We all know hemophilia moms are pretty amazing. I’ve been meeting them for 30 years, all types: moms who are professionals, moms who are rich, moms who make minimum wages, single moms, moms of six children, moms of only children, moms who smoke, moms who are health fanatics, moms who are teens and moms in middle age. I’ve met them overseas: Africans, Asians, South Americans, both the rich and the deathly poor. When we meet, there is the bond of motherhood that instantly forms, but there is also the bond of motherhood of a child with hemophilia. We are not strangers to one another.

I thought back today to when I first became a mother: 1987, at the height of the public fear-frenzy and anger surrounding HIV. Our community was torn apart, and all eyes were on Washington DC and New York City, where the leaders were, deciding the fate of thousands. Thousands of mothers watched their sons died.

And other mothers like me were desperately fortunate not to have shared that fate. Yet we also took up roles in the aftermath. After all, a whole generation seemed gone; those young men who perished could have become hemophilia leaders in the community. Instead, it was the mothers who picked up the leadership mantle.

Think about it. About the roles of mothers then. There was a new generation of mothers who were called to serve the community, because so many young men with hemophilia could no longer do that. For the next fifteen years, I watched this new generation of mothers become leaders. You know their names: Michelle Rice and Dawn Rotellini of NHF; executive directors Debbi Adamkin, Michelle Kim, Heidi Forrester, Janet Brewer; and directors like Sonji Wilkes and Shari Luckey. Many others went to work for Pharma too.

The great thing about having mothers involved is that they can relate to the younger men as sons, and raise them up as leaders too. Some of their own sons have become leaders in the community. But someday, these mother-leaders will be retiring from the community, their mission completed, their children raised. The good news is that more and more, a new generation of patient leaders are coming of age and making their mark. That’s as it should be. From about 1987 to 2000 or so, we had no young men to learn leadership. The parents, mothers especially, had to step up. And now the boys and girls born during that era are here to learn…. And to lead.

Mother’s Day—not always happy, often bittersweet—is for the brave mothers who waged the war against HIV and whose sons were sacrificed, as well as for the mothers who became leaders to help steer the community into open waters of hope and a future where young men will be safe from harm. We thank you.

Climbing for Chris!

Chris Bombardier…. have you heard of him? He’s only the first person in history with hemophilia to have summited Mt. Everest (and the entire Seven Summits) and this is the third anniversary of his historic climb. Incredibly risky, incredibly rewarding. And he is now executive director of the nonprofit I founded, Save One Life.

Chris at the summit of Mt. Everest!

Chris has dedicated his life to helping those with bleeding disorders in developing countries. He even put his life on the line, to raise money and bring awareness of the plight of those with lack of access to factor.

Now all he is asking is for us to climb! Not Mt. Everest, but your stairs, in your home. Climb your stairs 29 times, to represent Everest (29,029 feet), donate $29 to Save One Life, and challenge 9 of your friends! So we are climbing for Chris (to honor his climb) but really climbing for the kids who suffer.

So today I did it! 38 steps, 29 times. After after I did that, I did it about two more times. And I’m going to keep doing it this whole month of May. How about you? Enjoy this 2-minute video to “Holiday” by Green Day, get motivated, and climb! I don’t know about you, but being in quarantine has not helped my waistline. I’m used to being super active. This will help! Learn more at!

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