Laurie Kelley

The Beatles’ Brush with Hemophilia

Laurie Kelley December 10, 2023

What do the rock bands the Doors, the Beatles and Pantera have in common?

December 8, just two days ago. It’s the birthday of the Doors frontman Jim Morrison (1943), and the assassination dates of both John Lennon (1980) and Pantera founder and guitarist Dimebag Darrell Abbott (2004). A very famous date in rock history. I’m a huge Doors fan and consider them my favorite group ever. In fact, I was to have seen last night our local Doors tribute band, “Through the Doors,” with the amazing Ernie Potter as Morrison, but my friend was ill and we canceled sadly. I never miss a chance to see the Doors tribute bands.

Interestingly, I learned back in 2011 that Stephanie, a hemophilia mom I’ve known since 1989, one of the first 50 who wrote to me for my book Raising a Child with Hemophilia had a connection to the Doors. Her husband Art is good friends with guitarist and songwriter of the epic “Light My Fire” Robby Kreiger. He also happened to write me favorite song “Touch Me.” Thanks to Art, I’ve met Robby (speechless!) several times now.

Anyway, while never a huge Beatles fan, a learned through our dedicated archivist and researcher Richard Atwood of North Carolina, that the Beatles had a brush with hemophilia!

In 1964, at the height of Beatlemania, on their first tour of the US, the lads from Liverpool were the main attraction at a small fundraiser for the Hemophilia Foundation of Southern California. This is the equivalent of having Taylor Swift show up for a private fundraiser of a few hundred for hemophilia.

The fundraiser was held on Monday, August 26, at the home of Alan Livingston’s mother-in-law. Livingston was the president of Capitol Records, and had a son, Peter, with hemophilia. He had just signed the Beatles to Capitol Records. Tickets cost $100 per adult and $25 per kid $25. Also present was future actress Peggy Lipton of Mod Squad fame; she fell in love instantly with Paul McCartney, passed him her number and they became lvoers—at least briefly. Megastars Tony Curtis, Lloyd Bridges, Kirk Douglas, Stan Freburg, Eddie Fisher, John Forsyth, Edward G. Robinson, Frank Sinatra and Dean Martin also attended.

Dean Martin’s daughters write in their memoir, “… we all had a chance to line up, say hello, and shake their hands. I didn’t wash mine for a week. The British legends seemed a bit bashful, and when they spoke, their Liverpool accents were impenetrable. John did most of the talking and everyone was laughing at what he said, but try as I might, I could barely understand a word.”*

Attendance was limited due to security issues. Guests are served lemonade and cookies, then introduced to the four Beatles who sat on stools under a Deodar tree.

It was probably the most successful fundraiser that HFSC ever had. Brian Epstein, genius manager of the Beatles, personally wrote a check for $10,000 (the equivalent of $98,610 in 2023 dollars); and they raised much more. Alfred Dubin, the president of HFSC, and father to hemo-hero Corey Dubin, looked very pleased when accepting the check in the official photo. Yet the dollar amount was nonetheless limited by attendance set at 400 guests —a number imposed by the police for security purposes.

Now… anyone know Taylor Swift?

See a few photos of the event: https://lamag.com/uncategorized/how-the-beatles-really-ended-up-at-a-garden-party-in-brentwood

Thanks also to Paul Clement for his additional research on this topic!

*Deana Martin with Wendy Holden, 2004, Memories Are Made Of This: Dean Martin through his daughter’s eyes. New York, NY: Harmony Books. 300 pages.

Justice for the Victims

Laurie Kelley December 3, 2023

December 1 is recognized as World AIDS Day—this one is number 35, since the day was designated. Social media lit up with remembrances for those we lost. The hemophilia community was especially hard hit, so much so that it has been called the “Hemophilia Holocaust.” Nearly half of the known patients in the US died. It was the worst medical disaster in US history and deserves to be remembered.

It was also a disaster worldwide. One of the best books on the subject is And the Band Played On, by the late Randy Shilts. It describes in detail how HIV spread, was identified and how it impacted different countries in the world.

Below is a review submitted by Richard Atwood of North Carolina, who probably has the largest collection of bleeding disorder and HIV publications in the world. The review is from a book about redress movements—specifically for HCV infection—led by victims in the hemophilia communities in both Japan and South Korea. Richard notes that we tend to forget that not only HIV, but also HCV, infections accompanied treatment for blood disorders around the world, and that victims in each country have different situations resulting in different responses.

Accidental Activists: Victim Movements and Government Accountability in Japan and South Korea byCeleste L. Arringtoncompares and contrasts, for both Japan and South Korea, the victim redress movements for blood products used to treat hemophilia that were tainted with hepatitis C (and also for survivors of harsh policy controls applied to those individuals with Hansen’s disease, and North Korean abduction cases). Following the HIV victim redress movements for hemophilia in the 1990s, the hemophilia organizations in both countries mobilized for HCV.

About half of all hemophilia patients in Japan and South Korea were infected with HCV from tainted blood products. Other patient groups, such as mothers at delivery and surgery patients, also became HCV infected. Of the 2,000 hemophilia patients in South Korea, 25 became infected with HIV from local factor IX concentrate. Fewer South Korean hemophilia patients used factor concentrate due to greater poverty, while 40% of Japanese hemophilia patients became HIV infected.

The HIV lawsuits eventually resulted in monetary settlements to those HIV infected, with greater amounts granted in Japan in 1996 than in South Korea in 2013. Using some of the same lawyers again, lawsuits for HCV were brought forward—Japan in 2002 and in Korea in 2004—to sue the government and pharmaceutical corporations. South Korea advocacy faced hurdles: it was difficult to prove causality; the statute of limitations was applied; the two hemophilia organizations were in disagreement; public support was difficult to arouse; and the government delayed an epidemiological study, so there was no redress. In Japan, there were five lawsuits, an official inquiry committee, bottom-up public support once victims revealed their real names, and a bill passed for compensation, though hemophilia patients were left out, so there was some redress.

This book includes 18 pages for a bibliography and nine pages for an Index (with hemophilia included). Chapter 4, “The politics of Hepatitis C-Tainted Blood Products,” focuses on hemophilia patients. For her research design, the author conducted 225 participant/observer interviews in both South Korea and Japan in 2007, 2009, 2012, 2013, and 2015. The author characterized the analysis of international victim redress movements as naming, blaming, claiming, and shaming for the process of redress. This is an over simplification of the construct, though one easier to remember. She summarized in Table 4.2 her analysis of the HCV victim movements in Japan and South Korea. In the table, the components of redress (official inquiry, apology, compensation and other assistance, and institutional reforms) were scored (0 – not at all; 1 – partially; or 2 – fully). Japan received a score of 7 for full redress, while South Korea received a score of 1 for no redress (p. 145). For specific hemophilia questions, the author consulted Dr. Jerry Powell at UC-Davis, who is cited in Footnotes 2 and 121 (pp. 109, 142). The title accurately depicts the victims, who did not choose their adverse medical consequences and decided to seek redress. The subtitle summarizes the book. The author is an assistant professor of political science at The George Washington University.

Accidental Activists: Victim Movements and Government Accountability in Japan and South Korea by Celeste L. Arrington, 2016, Ithaca, NY: Cornell University Press. 231 pages.

Giving Season… Within Reason

Laurie Kelley November 19, 2023

I don’t want to sound like Scrooge, but the Thanksgiving season, with its #GivingTuesday, turkey brigades and appeals for charitable giving, is ripe for savvy people to take advantage of those who have plenty and want to help. Not always in a bad way; not everyone who needs help is trying to scam us. Most of the requests I get are indeed from people who need either factor or money. But… at what point am I enabling someone to not solve their own problems and learn from the experience, or to be dependent, or to just be not clear with their request, wasting time and resources?

I’ll give you some examples. Just this week I was hit with multiple requests for help. Most popular request? Factor. People contact me via email, Facebook messenger, WhatsApp, text. I don’t always see the requests when it comes at me from all sides. Requests for factor often do not have a clear message: what dosing size is needed? Is the child under a hematologist care? Who is the hematologist? What’s their email so I can verify the request? What address do I ship it to? How about telling me what country are you from first?

Who else is the patient asking? A request to me, while I get busy trying to match assay size and prepare shipments, could also be made to others without my knowledge, and scarce resources end up with one person collecting a lot.

One request this week was made from a patient from overseas who I’ve known for about 20 years. He’s legit—and wonderful. And he’s now living in the US! Becoming a citizen. But while waiting for the paperwork to clear, he needs factor. That I cannot do. Sending prescription medicine over state lines without a license is illegal. So I direct him to his local chapter and a public hospital. He’s okay with that and understands.

Requests for money are increasing. One patient from a developing country this week needs money for a relative with cancer. Testing bills are mounting. Even though I’ve known this patient a long time, I need proof. Doctor’s reports, invoices from the labs, the works. He provides them but they are not in US dollars, and it appears to be like a million dollars! So again, repeated requests for clarification. When he converts it, it’s manageable, so I will wire the money, but I cannot support the full treatment sadly.

There was a request this year from a US charity for hemophilia for a donation. I like giving to our local hemophilia organization, New England Hemophilia Association, and will help support other ones sometimes, especially when patients I know are engaging in walks and such as fundraisers. However, this charity has not published an annual report. An annual report will reveal sources of income by category, and expenses by category. It’s a good way for donors to see where their money comes from and how they spend it. You can compare this info with other like charities to decide if they are being wise with the public’s money. Without an annual report, and accompanying financial statements, I’m not supporting any organization.

And I am always leery of “emergencies” as in send money right away! Speed is a killer. This week came such a request from someone who is not a patient, but used to work in the hemophilia community. I have met her only once. In my entire life. She contacted me years ago when a child relative was in a serious accident (in a developing country) and needed an operation ASAP. She didn’t know who to turn to, and she knew I gave a lot to charity, especially for kids. I checked it out and it was legit. I wired the money… to the hospital for the operation, not to her. The operation was successful. Five years later, with no further contact, a request this week for money. To help with living expenses, for her. To help pay off her bills. I’m wary of the words “You are the only one who can help” and any accompanying Bible quotations about charity. And multiple frantic calls. I have met this person only once: does she have a shopping addiction? Gambling? Drugs? Living day to day and knowing how to manage your money is a maturity problem, not a charity situation. And I’m done raising children.

Years ago I paid the rent for an immigrant hemophilia family who had just arrived in the US from a war-torn land, who just needed a boost. The request was verified by both the local hemophilia organization and the landlord. I paid the landlord three months’ rent. I received a heartfelt thanks and never heard from the family again. They were on track and doing well. No news is good news in this case.

So while it is a month of giving, be careful. Be extra careful when someone tries to FastTrack you. Ask for invoices, receipts, a third party, a hospital administrator in finance to verify, a doctor’s letter on letterhead to confirm diagnosis. A nonprofit should always have an annual report ready for download from its website. Read it. See what they spend their money on. Ask questions, lots of them. That way you can be assured that the money you donate goes to those who really need it.

Remembering Our Veterans: Renée Paper

Laurie Kelley November 12, 2023

This past week we honored our veterans for their service to our country. This past week I also received a message from someone in the von Willebrand disease community, surprised and saddened that no one seems to remember one of our great veterans—Renée Paper, RN. Her date of passing was November 7, 2007, at age 49. So young, but she made a huge impact. She was a pioneer in VWD care for all. She should be and needs to be remembered. So much of the care we receive today for VWD we owe to Renée. This includes my book on VWD, A Guide to Living with von Willebrand Disease, which I originally wrote with Renée.

Renée had von Willbrand disease, and was an emergency room nurse in Nevada. She traveled and lectured frequently. She was a powerhouse when lecturing. I saw her absolutely command a room full of nurses and doctors with her photographic memory, brilliant knowledge of VWD and her deep-seated passion. She spoke with authority, compassion and a call to arms, for everyone to find unidentified VWD patients, get them the treatment they deserve and need, to stop the silent suffering of women. She herself had had a hysterectomy in her early 20s, rendering her unable to have children, when doctors did not correctly diagnose her with VWD and sought to end her uncontrollable bleeding. I think in part her burning dedication and fiery style of lecturing was fueled by the embers of what was left of her ability to control her life, to have children. She didn’t want this to happen to any other woman.

Renée Paper and Laurie Kelley at national meeting

If you never heard a Renée Paper speech, you missed some great speeches. One of my favorite lines by her was when she blamed the medical community for misdiagnosing women who had VWD as being “hysterical,” or “imagining” their illnesses. “You know why this happens?” she would bark out. “Because men dominate the medical scene! And you know why they don’t take us seriously? Because men don’t have uteri!” Leave it to Renée to always use the correct Latin plural of uterus.

She traveled with me to Puerto Rico and the Dominican Republic on lecturing tours together, and she and I presented in places as close as Connecticut and far away as Australia. She was brilliant; she was fun-loving. She could be irreverent yet compassionate. She loved animals, and one of her favorite gifts to her friends was to send a photo of herself each New Year’s with a different animal from different parts of the world: kissing a dolphin in the Caribbean; draping a boa constrictor around her neck in Mexico; nuzzling an alligator in New Orleans; atop a camel in the Canary Islands. Renée knew how to grab life by the horns and tame it, and she wanted others to do that, too, regardless of whether they had a disorder or disability.

Renée walked the talk: her message was always to get educated about VWD. Don’t let it keep you from enjoying life. Play the hand you were dealt. (Yes, she was from the Las Vegas area!) Play it and win.

Renée was a visionary leader. As an emergency room nurse in Nevada, she saw the need for a patient-based hemophilia organization and an HTC. Nevada had neither when she first lived there. Typical of Renée, she saw the need and figured out how to meet it. She founded Nevada’s first patient organization and HTC, both of which continue to this day. In fact, November 1 is Renée Paper Day in Nevada! How many people can claim such an honor?

So we remember an inspiring and action-oriented leader as one of our veterans. As if she knew the clock was ticking, she made incredible accomplishments that continue to benefit patients to this day. A legacy like that is the mark of a true leader.

Know Thyself—and Thy Medical History

Laurie Kelley November 5, 2023

“Know thyself” is a philosophical maxim, inscribed upon the Temple of Apollo in Delphi. It’s also part of a quote from Socrates, “To know thyself is the beginning of wisdom.” True wisdom is knowing… but also recognizing what you do not know, and what you need to learn.

November is National Family Health History Month, according to the US Surgeon General. This is an important national public health campaign to encourage all Americans to share their family medical concerns with family members, and to learn more about their own family health history.

I just turned 66, and am keenly aware that some of my family members, and many friends, are undergoing health challenges now. Kidney disease, cancer (a big one), heart problems… all of these can have a genetic component.

Hemophilia did not seem to run in our family—ours is the first known case in several generations. But diabetes is rampant. From an early age I’ve been careful about monitoring this, keeping my weight down, and staying active.

Knowing about your family health history of a disease can motivate you to take steps to lower your chances of getting the disease. Good places to start? Stop smoking—now. Exercise regularly (hike, bike, walk, swim) and change your eating habits. Get rid of poisonous soft drinks, limit alcochol. Family history is considered one of the most important risk factors for health problems such as heart disease, stroke, diabetes, cancer and even certain psychiatric disorders.

Knowing whether hemophilia “ran” in your family was important in family planning. For us, it was a surprise, but now we know the chances of hemophilia being passed on—an important thing for each child to know, for themselves and for their future partners. There are several ways to test for hemophilia pre-birth, and post birth.

Umbilical cord blood is now used to treat more than 80 diseases and disorders, including some that are transmitted to newborns. If you know your family’s health history, you can decide whether or not to store your newborn’s cord blood at birth. The stem cells from this cord blood could possibly be used to treat future diseases in your family.

There are free tools on-line to help start recording your family history. But start with your primary care physician, who will know the right questions to ask. Know thyself, thy body, thy health!