Laurie Kelley

Hemo Nonprofit? Beware!

Laurie Kelley November 6, 2022

We had a real scare the week of Halloween… cyber thieves had raided our corporate bank account and were draining it. Luckily my bookkeeper and I noticed some odd and large withdrawals when reviewing the books, and we alerted our bank right away. It was a substantial amount for us—we are a small business—and yet we were not too worried. We had read that bank accounts were protected by the FDIC up to $250,000 and that we would be reimbursed our money. Right?

Boy, were we in for a shock.

The FDIC insures back account deposits up to $250,000 for private accounts. Not corporate. While we noticed about half the theft amount within 24 hours of it being withdraw, which the bank would return (because they could reverse the charges right away), the rest was not guaranteed. The bank assured us they were in their rights to not give us the stolen money.

Some research on-line confirmed it. The bank seemed to think we should have already known this as standard procedure. But I realized that if I thought we were insured, I bet many other business owners were also not informed of this. I began polling my local friendly businesses, and no one knew of this rule. Meaning, everyone was at risk of cyber thieves, who, as our bank told us, are getting more savvy and more bold.

GlobalSign cites a report Accenture and the Ponemon Institute that says the rate of breaches in the financial industry has tripled over the past five years. “The annual economic cost of cyber crime, as reported below, is now estimated at north of $1 trillion, a multiple of 2017’s record-year aggregate cost of approximately $300 billion from natural disasters.” And only 5% ever get caught.

I went to the local police to file a report, mostly as proof to the IRS, as I thought we would need to declare a loss. But fortunately, the bank’s fraud department reviewed our case and awarded us all the money back. I thought they would try to track down the thieves, but that would cost them more than was stolen, probably. I realized that their fraud department probably just wanted to ensure I was not the thief! I supposed that happens too.

So, I want to warn my small-business friends, and all our hemophilia nonprofits: please speak with your banks about protecting your assets from cybercrimes. If it can happen to me, it could happen to you. And I don’t want to ever have to deal with this again, if I can help it, and I don’t want you to either.

Call your bank this week!

Casting a Vote

Laurie Kelley October 30, 2022

“Every time you spend money, you’re casting a vote for the kind of world you want.”

Environmentalist Anna Lappe

Pritam of India

It’s voting season here in the US, and this quote above comes to mind, but not about our politicians or economy. My friend and colleague Usha, from India, from time to time alerts me to people in dire need of help. Not just charity, but a way to give that makes a long-term impact. Like buying a prosthetic for a person with hemophilia so they can regain their dignity and livelihood. I’m totally on board with that. Consider this call for help she shared:

“I’m Pritam Rudra Paul, from Agartala, Tripura, India. I’m 28 years old, and have severe hemophilia B.

I was diagnosed with hemophilia in my early childhood. But due to wrong treatment and unavailability of free factors, I was unable to continue my treatment. As a result of repeated bleeding in my joints, both my knees were damaged, and I was unable to walk. Somehow from home I continued my studies as I was unable to attend school.

“In 2007, I went through a very hard time. I visited Christian Medical Center (CMC) in Vellore, India for a severe bleed and the doctor advised an operation. I requested help from many organizations, societies, HFI and doctors from Vellore. Finally I was able to continue my treatment and had my operation in 2009. I was finally able to walk properly!

“Life went on. I completed my graduation from college, and joined in a private firm, earning my own money. This is important because I come from a poor family. My father owns a very small business, selling fast food in a thela (cart). My mother is a housewife, and I have also a sister who is also studying in college. Our income puts us below the poverty line.

“Then, on November 21, 2021 I was married! But the day before that occasion, I got a serious muscle bleed in my right leg. It was hurting tremendously. I had infused many shots of factors, but the situation was going worst day by day. I went back to Vellore on December 10, 2021. After a check up they told me to go for another operation as an infection was already spreading all over the leg. The medical team tried their best to save my leg, but unfortunately couldn’t save it. My life was at risk due to the infection. On December 24, 2021, my leg was removed.

“The worst part was the finances. Several times I had to go to Vellore. This required money for traveling, the operation cost, and medicine. it was near about $8,000 US, and we earn less than $3 a day. In total, my family and my wife’s savings have been spent. I had to borrow money from my friends and relatives to pay for my treatment. During this time, I lost my job too. I must now look for another.”

Pritam Rudra Paul is an impressive young man by all accounts. No self-pity, always including his family in his concerns, and I agreed to help. And now? He has a beautiful new leg and is walking again! Check out the photos and videos. This is the kind of voting I like best.

Pritam emailed me yesterday and said, “I’m very confident by walking with this. I hope I will return soon to my normal life again. Thank you for your support and blessing. We are always thankful to you and Usha.”

Medicare… Me?

Laurie Kelley October 23, 2022

Yup. This week I turn 65, and I am officially on Medicare! It makes turning 65 a joyous event. Really!

Switching healthcare policies over to Medicare was surprisingly easy. But partly this is due to my previous work on hemophilia and healthcare. Back in 2005, we were the ones to alert the community to the “Coming Storm” in insurance. We alerted the community that choice was going to start getting restricted; you would need to accept tiers of medicine, PBMs were going to dominate, and choice of factor may no longer exist. All this in the name of healthcare cost-cutting. And it all came to be.

We took our message out on the road, in a live-action form of our newsletter PEN’s Insurance Pulse, calling the workshops Pulse on the Road. We did this for 10 years. I must say that Michelle Rice, mother of two with hemophilia and formerly with the National Hemophilia foundation was our healthcare insurance guru, and taught me so much!

Glory days! Michelle Rice, Kelly Lynn Gonzalez and Laurie Kelley

And now I get to use it. Medicare is for anyone over age 65. It’s an entitlement program; you start contributing to it when you start working, kind of a forced saving plan. It’s made up of several parts. Part A is free of cost, but has limited healthcare coverage. It covers medically necessary inpatient hospital care (including rooms, meals, general nursing and drugs), skilled nursing facility care, some nursing home care (if following an inpatient hospital stay) and hospice care.

Part B is optional but I strongly urge everyone to get it; it doesn’t cost that much per month as an add on. It covers: medically necessary doctor services; outpatient medical care; durable medical equipment; some preventive care and other medically necessary services Part A doesn’t cover, such as ambulance services; cardiovascular, cancer and diabetes screenings; and laboratory services. Pretty important stuff, especially as you age.

Part D covers prescription drugs.

Our community is aging, which is good news! But people with hemophilia from previous generations, now in their 60s and 70s will have health issues, such as joint deterioration. It really pays to advocate, ask lots of questions and learn more about Medicare. You can enroll during the month you turn 65, but you should start researching it and apply for it three months before that. Go to https://www.medicare.gov/ to learn how to apply.

Until then, enjoy your youth! And stay on top of all insurance, Medicare or not.

The Curse of the Cobalt Moon

Laurie Kelley October 16, 2022

Excerpted from PEN, 11.20

Here’s another Halloween treat in hemophilia! The Curse of the Colbalt Moon by Lou Hernandez (Austin Macauley Publishers, 2019) is a fictional book for teens, that includes vampires and hemophilia!

Rodolfo Josue Puig, who goes by “Joshua” to fit in, is a high school junior living in South Miami. Born in Cuba, Joshua was only nine when he was specially airlifted with other Cuban children to America in 1960. With no family members to help him, Joshua lives in a foster home. He loves playing on the varsity baseball team. Like his grandfather, Joshua has hemophilia that he treats with a daily injection of fibrinogen. After a fight with a teammate, Joshua is suspended from the school baseball team for his hemophilia, not because of the altercation. From a classmate, also from Cuba, Joshua learns that he is a “docile” half-vampire because his human mother married a vampire.

On the hunt night of the cobalt moon, hostile half-vampires (having a human father and vampire mother) drain the blood from docile half-vampires to become full vampires. Joshua and his classmates (some are also docile half-vampires) make many fatal errors of judgment while fleeing for their lives, but they eventually escape. Apparently, being a docile half-vampire improves baseball skills and reduces the bleeding due to hemophilia! The treatment of hemophilia seems inappropriate for the 1960s, and the genetics of vampires is never fully explained.

But every vampire story is a bit different, isn’t it?

You Should Donate Blood (But Not Like This)

Laurie Kelley October 9, 2022

I missed promoting National Blood Donation Week, which was September 1-7. And International Plasma Awareness Week (IPAW) just ended and was held October 3-7. This is promoted by the Protein Plasma Therapeutic Alliance (PPTAglobal.org), which is also involved in hemophilia. There are still factor products made with human plasma, so it’s always good to donate!

But don’t think it’s like the following donation story! I love reading about medical history, especially about the men and women who discover cures and breakthroughs. One of my favorite stories is the history of blood, particularly how physicians and researchers employed it and through research and trial and error, learned how to properly transfuse. And since I wrote about vampires and vitalism (sort of like a blood transfusion!) last week, let’s visit this story.

The ancient Greeks saw all phenomena as the result of the interaction of four elements: air, fire, wind, earth. In the body, this manifested as “humors”: phlegm, choler, bile, and blood. The Greeks believed good health meant maintaining a balance in the humor, so draining blood (“blood-letting”) and purging the digestive system should help restore balance.

One of the first human blood transfusion first took place in Paris, in the 17th century. It took a wild and undiagnosed insane man, Antoine Mauroy, to help change the course of history.

One night in 1667, in a frenzy, he stripped off his clothes and ran through streets of Paris, setting fires. Dr. Jean-Baptitste Denis, physician to king Louis XIV, had been experimenting with transfusing blood from animals into humans. He had his “aha” moment: let’s try this on Mauroy.

He infused ½ cup of calf’s blood into the mentally besieged man. Why calf’s blood? He believed that since the calf was a calm animal, its blood would be calm. Infusing it into Mauroy should calm the wild man.

This belief was called “vitalism,” that the blood somehow carried the essence of the creature. A stag’s blood carried courage; a horse’s, strength. A calf, calm.

Prior to this experiment, other physicians had dabbled in transfusions with animals. Richard Lower, an English physician, tried transfusing blood from one dog to another: he figured out how to infused from an artery into a vein and it worked. His findings about the transfusion of blood are often ranked among the most important discoveries in medical history. And he is still remembered one of Oxford’s finest doctors. The English medical community worked on transfusions a year before Denis.

Dr. Denis had also tried transfusions in humans twice before, successfully.

So back to the madman. Unfortunately, Antoine Maury eventually died after the third infusion. Dr. Denis was accused of murder, and later acquitted, but it turned out that Maury’s wife poisoned Maury! He wasn’t the only wild one in that family. Human transfusions were stopped, and another 150 years would pass before they were attempted again.

And since it’s almost Halloween, I would add, unless you include vampires.