Richard Atwood

Blood, Germs and Steel

Laurie Kelley December 8, 2024

December 1 is World AIDS Day; this blog today is dedicated to sharing more about that history through a book review by our esteemed historian Richard Atwood of North Carolina. The bleeding disorder community was deeply harmed and impacted by the spread of HIV through the nation’s blood supply in the late 1970s and early 1980s. We lost about half of our 20,000 population, with many more surviving with AIDS and/or hepatitis C.

Some statistics: About 88.4 million people have been infected with HIV and about 42.3 million people have died of AIDS. Globally, 39.9 million people were living with HIV by the end of 2023.

The book is Blood and Steel: Ryan White, the AIDS Crisis and Deindustrialization in Kokomo, Indiana, by Ruth D. Reichard. The 242-page book was published in 2021.

Richard writes:

Ryan White was born on December 6, 1971 in Kokomo, Indiana, a mid-sized American city. His mother, Jeanne White, had hemorrhaged and Ryan was subsequently diagnosed with hemophilia, so both were referred to hematologists in Indianapolis. A sister, Andrea, was born in 1973, the same year that Ryan became the poster child for the Howard County Hemophilia Society. Jeanne divorced, remarried, and moved to Windfall. Following a second divorce, Jeanne, as a single mother with two kids, moved back to Kokomo in 1984. Ryan attended Western Middle School in nearby Russiaville. He was diagnosed with AIDS in December 1984, becoming the 31st AIDS case in Indiana and the second case in Howard County. Rather than hide his AIDS diagnosis, Ryan bravely chose to be open about it. Ryan wanted to attend school, but some local activists wanted him barred from public schools. When Ryan returned to school on February 17, 1986, the Continental Steel Company locked its gates.

After 90 years as the largest employer on a 183-acre site in Kokomo, Continental Steel was bankrupt by 1980, then in Chapter 11 proceedings, that led to liquidation through Chapter 7 proceedings. Local residents were unaware that the former steel plant would become a Superfund toxic site due to massive chemical pollution that endangered the environment and the health of the workers. Certain citizens, instead, reacted to the “toxic” threat of a boy with hemophilia and AIDS wanting to attend school by bringing lawsuits to bar him. There was more national news about one boy than about an entire unemployed work force.

Ryan, the innocent and blameless victim, became a poster child for AIDS. Following reversed court decisions in 1986, Ryan entered the 8th grade at Western High School. Due to failing health and not being eligible for AZT, plus animosity at school, Ryan moved with his family to Cicero in 1987 to attend Hamilton Heights High School, where he was accepted. The Ryan White Story, a made for television movie, was shot in Statesville, North Carolina, then aired in January 1989. Ryan interacted with many celebrities. Ryan died on April 8, 1990 at age 18. Jeanne finished Ryan’s co-authored autobiography before she advocated in Washington for the Ryan White CARE Act of 1990. Jeanne remarried in 1992 and later moved to Florida. The Children’s Museum in Indianapolis created The Power of Children exhibit that preserved Ryan’s bedroom and told his story. Kokomo did not memorialize Ryan, while Cicero did. Kokomo turned the former Continental steel plant site into soccer fields.

Richard adds: This text, that compares and contrasts historical biographies of both a boy with hemophilia and AIDS and a failed steel factory, includes 27 pages for Chapter Notes, 10 pages for a Bibliography, 12 pages for an Index, and two photographs on the cover. The city of Kokomo reacted more to the toxicity of a boy with AIDS than to the toxicity of a polluted industrial site. For both Ryan and Continental Steel, there were multiple legal battles fought in the courts, the health system, and the educational system. Each chapter in the book contains sections on Blood, Steel, and Ryan White to reveal the ongoing events for both historical biographies, mainly from the 1980s, with updates to the present. The complex legal issues are clearly described and interpreted. The author, both an attorney and a historian, lives in Indianapolis, Indiana.

Black Gods

Laurie Kelley August 4, 2024

Race is back in the headlines: at the Olympics and in politics. How about some positive reflections on race and hemophilia?

Our exceptional archivist, Richard Atwood of North Carolina, has found another book that mentions hemophilia. This one was such a surprise to me, as it takes place in Boston, my home base.

Onaje Woodbine grew up in a Roxbury apartment, a predominantly black neighborhood. Onaje lived with both his parents, who were well educated. Still, Onaje grew up in the “streets,” where the way to escape from a poor environment was to become a gangster, rapper, ball player, artist, or student. Due to his natural talent, Onaje chose street basketball.

Source: https://www.bu.edu/bostonia/winter-spring17/onaje-woodbine-street-basketball/

At 17, he was recruited to a prestigious, private high school in New Jersey. Next, he enrolled at Yale University, playing basketball at an All Ivy League level for two years, before resigning from the team after his sophomore year. His resignation letter was published in 2000, in the Yale Daily News. After completing his Yale degree, Onaje enrolled at the Boston University School of Theology to earn his Ph.D. His dissertation research consisted of four years—from 2010 to 2014—of participant-observation for an ethnographic study of street basketball in the black neighborhoods of Roxbury, Dorchester, and Mattapan in Boston. He wrote daily field notes and conducted in-depth interviews with street basketball players, age 18 to 39. Not all of his professors at Boston University approved of his study on the religious dimensions of basketball.

Many street basketball players used the games as “lived religion” to take their minds to another place and time. The games had the patterned behavior of ritualistic and ceremonial components of religion, partially based on the history of the black church and Muscular Christianity from the YMCA that combined religion, health, and sports. While the streets provided the socializing spaces of community centers, street corners, and basketball courts, in additional to schools and churches, activities such as memorial basketball tournaments during the summer provided means to deal with premature death, violence, fatherlessness, illness, poverty and racism.

From age ten, and for the next seven years, Onaje had a constant companion and mentor named Marvin Barros Jr., who was four years older. Marvin was 6 feet 4 inches tall, skinny, and dark skinned. He also happened to have hemophilia. His swollen, painful, and fragile joints prevented him from playing basketball. He had bleeding gums at night. Instead of playing street basketball, Marvin mentored other young black men and focused on art and poetry. Before he died at age 21 due to complications of hemophilia and HIV, Marvin fathered a son named Daeshawn. The Yawkey Club named its teen center for Marvin Barros Jr. as a memorial.

You read about this fascinating mentorship and author in Black Gods of the Asphalt: Religion, Hip-Hop, and Street Basketball, by Onaje X.O. Woodbine (2016). Woodbine lives and teaches philosophy and religion at Phillips Academy in Andover, Massachusetts—right down the road from me. His LinkedIn account also lists that he is Associate Professor at American University.

Know This Superhero in Hemophilia

Laurie Kelley July 28, 2024

This weekend saw a record breaker. Not the heat. Not the Olympics. Not politics. It was the movie Deadpool and Wolverine, which grossed an astounding $205 million for its opening weekend. I confess I adore Deadpool, followed closely by Wolverine. My two favorite superheroes.

Someone on Facebook recently wondered if the newer generation of people with bleeding disorders will remember the superheroes who once broke records during our time: the late 1980s and early 1990s, fighting for justice and compensation from HIV infection in the blood supply. Our world is safer, thanks to them.

Our favorite researcher and archivist from North Carolina, Richard Atwood, shared with me a review of a book by one of our superheroes. Elaine DePrince, someone I met long ago, inspired me with her advocacy and energy. But her personal sacrifices, generosity and compassion reaches new level after reading about this new book, written by Elaine, called Mikey Speaks Out. You’ll see how Elaine welcomed the challenges of raising children with disabilities, even adopting them. The fighting for justice for them, and authoring two books about her experiences. Just incredible.

Richard writes:

Michael-Noah, called Mikey, was the first child born to a 21-year-old mother whose father had hemophilia. Mikey had not only severe hemophilia A, he also was deaf and had a cleft lip and palate. His mother gave Mikey up. He spent months hospitalized for his surgeries and medical issues. Fortunately, there was a hemophilia center located in the hospital. A foster mother in Buffalo, New York sedated Mikey daily with liquid Valium, which slowed his development. When Mikey was eighteen months old, a psychologist diagnosed him with autism, mental retardation, deafness, and blindness.

Charles and Elaine DePrince, from New Jersey, brought Mikey home with them. Elaine was a special education teacher. Mikey now had two older brothers. Mikey acquired a hearing aid, a padded leather helmet, and glasses, all of which were improvements for his senses and protection. At two, he acquired metal leg braces, that allowed him to walk for the first time. He developed bruises from his hemophilia, and began home treatment, rather than having to visit the hospital, for his factor VIII infusions. When he was three, Mikey attended a handicapped pre-school for half-days. Due to poor motor skills, he had trouble using sign language, yet he could read lips quite well. Audiologists could not determine his hearing loss. At age five, Mikey attended a communication handicapped school for two years. His family adopted two younger boys, named Teddy and Cubby, who also had hemophilia A. In 1986, Mikey, not wearing a seat belt, was in a school bus accident. He suffered a severe skull fracture that resulted in partial paralysis, damaged eyes, lost speech, and diabetes insidious.

In 1988, Mikey, Teddy and Cubby all had HIV tests. At age nine, Mikey, who read body cues of an audiologist, left the deaf school after faking some hearing tests. He began home schooling. During a CT test and an audiogram, Mikey was found to be totally deaf due to missing inner ears. His intelligence was not limited; in fact, he was a speed reader. Eventually, Mikey, Teddy and Cubby became sick with AIDS. The Children’s Hospital AIDS Program was 90 miles away. The monetary award from the school bus accident lawsuit helped to purchase an indoor, in-ground swimming pool and an RV. Mikey learned of prejudice, bigotry and hatred from reactions by misinformed adults. Cubby died of AIDS in 1993. The DePrince family helped to feed the homeless in Philadelphia. Mikey acquired measles, and later toxoplasmosis and cytomegalovirus encephalitis, that led to a seizure, a high fever, and eventually his death. Elaine DePrince, his adoptive mother, wrote Cry Bloody Murder (1997) as the legal theory for HIV transmission in hemophilia. At age 51, Elaine enrolled in law school and took part in the wrongful death lawsuits for her adoptive sons. Following Mikey’s wish, Elaine adopted six girls from Africa!

Elaine and Charles had two biological sons and adopted nine children. Sadly, the three adopted sons died of hemophilia and AIDS. Charles died of Parkinson’s disease in 2020. But nothing slowed Elaine down—her newest book is testament to that. To me, she’s a super mom and superhero. I hope our community remembers her.

Order Mikey Speaks Out here.

Maggots: A Treatment of Hemophilia?

Laurie Kelley June 15, 2024

I’ve been doing a lot of gardening this spring, and have come across helpful and lowly creatures like snails, earthworms and spiders.

This got me thinking of other helpful creatures, like… maggots.

I detest flies with all my heart. But I realize that maggots—the larva form of flies—have had many uses to both animals and humans. They break down carrion; they eat dead flesh from wounds when there is no other treatment. And they have been used historically to treat complications from hemophilia.

Excerpted from our national archivist, Richard Atwood, from North Carolina:

In 1937, Frederick J. Pohle MD and Stephen Maddock MD at the Thorndike Memorial Laboratory and Harvard Medical School in Boston, Massachusetts reported on the treatment of an infected wound with maggot therapy in a severe case of hemophilia. I.G. was a single, nineteen-year-old, 150-pound, Jewish youth who was first diagnosed as being a “bleeder” at age six when a small cut on the buccal mucous membranes bled for twelve days. The symptoms of easy bruising were followed by frequent hemarthroses in his knees, ankles, and elbows. There was no family history of hemophilia.

Earlier in 1932, an attempt to forcefully correct a bent left knee resulted in a severe hemorrhage that was controlled with three blood transfusions. Then a hemorrhage developed in the left calf muscles, the posterior skin broke down, and the extensive infected wound did not completely heal for one year even with constant care by the physicians.

I.G. had recurrent hemorrhages into both knees and had not walked for the previous five months. On January 18, 1937, I.G. was admitted to the hospital with the chief complaint of “swollen knees.” There was moderate effusion in both knee joints and restricted motion due to pain. An x-ray examination revealed chronic degenerative arthritis. With the patient confined to bed, the knees were treated with radiant heat and active and passive exercises. After a spontaneous hemorrhage into the right calf muscles on February 4, the leg was elevated, immobilized, and packed with ice. Then two transfusions totaling 500 cc. of whole citrated blood during the following 44 hours stopped the bleeding and opiates relieved the pain. The lower right leg was swollen to three times its normal size. After several large blisters containing brown fluid developed on the posterior side of the right leg, a sterile dressing was applied daily. The blisters ruptured on the twelfth day discharging large amounts of blood-tinged liquid. The calf developed a deep denuded area measuring 6 by 15 cm. and the back of the knee developed a lesion that refused to heal due to pressure necrosis and low-grade infection. The right knee, with a 25 degree flexion deformity, was treated with baking and massage, and the drop right foot was treated with electrical stimulation.

At five weeks after hemorrhage the infected wounds were not healing. There was a daily fever between 100° and 102° F. Maggots—yes, maggots— were then placed in the infected wounds with additional maggots added daily as necessary. The dressings were changed daily. One week later, the patient’s temperature dropped to normal and much of the old blood clot and necrotic material had been removed by the maggots. The wound measured 4.5 cm. in depth and exposed the gastrocnemius muscle. Maggot therapy continued for four weeks entirely clearing up the infection and rapidly healing the wound. A clean granulating area of 1 by 5 cm. remained that was treated with an application of warm boric acid packs and was healed in two weeks. There was no evidence of bleeding during maggot therapy. After three months of therapy, the wound was healed. I.G. became ambulatory and was discharged on May 8, 1937.

In 1963, C.B. Kerr MB at the University of Sydney, Australia, reported a case with R.D., a 32-year-old with mild factor IX deficiency. A rotary mower injured his right big toe. R.D. had bleeding from at least six lacerations and had a severe staph infection. Even with wound cleansing, local hemostatics, adequate plasma for 72 hours and appropriate antibiotic therapy, control of the hemorrhage and infection required 14 days in the hospital. After another 14 days, amputation was considered necessary. Then during a hot weekend, several maggots developed within the dressing and thoroughly cleaned the wound. Healing was complete in ten days.

Maggots helped clean wounds in people with hemophilia. The abominable fly was proven to have a place in helping those with injuries, hemophilia or not, and an important role in medicine.

References:

Kerr CB. 1963 The Management of Haemophilia. Glebe, New South Wales, Australia. Australasian Medical Publishing Company Limited.

Pohle FJ and S Maddock. 1937 Maggot therapy in an infected wound in hemophilia. Journal of the American. Medical Association 109:2055-6, December 18.

Hemophilia and Poetry

Laurie Kelley April 28, 2024

To finish up National Poetry Month, let’s consider two more poets with hemophilia.

by Richard J. Atwood

To me, poetry specializes in the efficient expression of emotions and descriptions. It condenses writing into a purer form. You might compare poetry to the fractionation and purification of blood plasma to get the purest factor proteins, but I guess that metaphor would be a stretch.

Though I’m not an expert, I admire well-written poetry. Take time to read the exceptional works by the following poets who happen to have hemophilia.

Read My Mind by Jerome Stephens

Kildanore Press, 1990

Jerome Stephens (1955–1993) was born in Ireland with mild factor VIII deficiency. As he grew up, he was careful to avoid physical injuries and unnecessary knocks, and became a strong and robust young man who enjoyed outdoor activities. Living in Dublin, Jerome married and had children. In 1982, he underwent an appendix operation and was treated with contaminated factor concentrate imported from America. He was diagnosed with AIDS in 1987.

Jerome was an artist who expressed himself through sculpture and poetry. But he is better known for speaking out publicly—the first to do so openly for a television camera—about how AIDS had ravaged his life and family. With encouragement from his hemophilia nurse, Jerome published Read My Mind, a collection of 52 poems that includes photographs of six wooden sculptures carved by the poet. He does not mention hemophilia. Instead, his poems emphasize his struggles, and how his love and religion, along with his family and friends, strengthened him to fight.

Jerome wanted to speak on behalf of all Irish people with hemophilia and AIDS. His poems still capture that desire. After he died, his daughter spoke on his behalf in 2000, giving emotional testimony at the Lindsay Tribunal, after which those infected with HIV or their families received a financial settlement.

4:56: Poems by Carlos Fuentes Lemus

Dalkey Archive Press, 2012

Carlos Fuentes Lemus (1973–1999) was born to a literary family: his father, Carlos Fuentes, was a Spanish-language Mexican novelist and ambassador to France; his mother, Silvia Lemus, was a journalist. Carlos was a Mexican citizen who grew up mostly in Princeton, New Jersey, with short stays in various American cities where his father taught.

Carlos was factor VIII deficient and was infected with HIV by 1985. Carlos was a bright student, but never finished high school. He immersed himself in literature (mainly English) and in music. His interest in pop culture and the arts led him to become a writer, poet, photographer, painter, and movie director.

Carlos wanted to publish his first book of poetry after E. Shaken Bumas solicited several of his poems for the Minnesota Review in 1999. Bumas helped to record over 50 of Carlos’s poems that were to be used as the soundtrack for Carlos’s unfinished movie Gallo de Pelea. Unfortunately, Carlos died before completing those projects. Instead, his poems were posthumously published in 4:56: Poems. Written in English with some Spanish words and syntax, the poems delve into imaginative interpretations of youthful experiences. There is no mention of hemophilia in these lively poems that seem almost experimental or unfinished. Carlos also collaborated with his father on the book Retratos en el Tiempo (1998), in which his father wrote profiles of famous people he knew and Carlos took their photographs.

Poetry is an international genre that appears in many forms. These two poets with hemophilia did not have to include their bleeding disorder in what they wrote, but having it possibly sparked their passion to write. Maybe you’d like to express yourself in a poem? Go ahead! Dream, compose, write.

This review originally appeared in the Parent Empowerment Newsletter, May 2016