VWD and Vampires!

October is the month of Halloween, and it always gets me reading my classics, like the excellent “Dracula” by Bram Stoker and “Frankenstein,” by Mary Shelley. Even some H.G. Wells and Ray Bradbury, my favorites.

We’ve blogged about hemophilia and vampires before. But here’s a twist on vampires in literature from our literature reviewer at large, Richard Atwood of North Carolina, in a book called Orrora.

It’s the outset of autumn in New York City. Joel Powers, an independent film producer with blondish hair and blue-gray eyes, specializes in horror films. Now he’s gathering information for a book by visiting crime scenes to gain inspiration. In particular this one: the third victim of a serial killer called “The Bleeder,” who is found at 40th and Columbus. The killing is coded an unnatural or unattended death, which catches Joel’s attention. At the scene, he spots Ms. Orrora Dalca, a crime expert from Washington. Joel notices Orrora’s thick black hair and greenish-gray eyes. She notices his unusual blood scent. [Ed. Blood scent? Hint!]

The victims of the three ritualistic killings are all males, killed at night with slashed throats from claws, within 48 hours. Orrora meets up with Joel. He’s hungry (and seems attracted to her), so he takes her to a restaurant, where she eats a bloody rare steak [foreshadowing?].  He learns that Orrora was born in the U.S., but grew up in Slovenia, hence her accent. Her deceased father was from the U.K.

Later, a fourth victim is attacked on 11th Street, though Orrora interrupts the attack, and is beaten up. The victim dies. At the crime scene, Orrora finds a pure gold button with a crest that identifies The Bleeder as a Petrescu [a patronymic family name common in Romania… more hints!].

Joel later learns from Orrora that The Bleeder is a woman, because all vampires are female. Orrora reveals that she is 76 years old and a dhampir, or half-vampire, because her mother, who is 112, is a full-blooded vampire, and her father was human. Due to a resistant Y chromosome, a full- or half-blooded female vampire who mates with a male having the recessive gene creates a female vampire.

Now Orrora wants to taste Joel’s blood by pricking his finger; she notices a spiciness in his blood. Joel accepts that Orrora is a half-vampire. Her bruises from the attack heal quickly.

Soon victim 5 turns up; he is Soloman Esterhaus, who Orrora says has an odd blood smell with a rancid taste. Esterhaus, from Seattle, was recently diagnosed with von Willebrand disease, and was in New York City to see a specialist. His VWD causes increased blood splatter at the crime scene.

Orrora learns that The Bleeder is Piedra Olchescu from Bucharest, Romania. Orrora and Joel eventually spend the night together, after an ultra-rare beef dinner—of course! The police learn that all of the murder victims had some form of a blood disease. For vampires, blood diseases are a delicacy. Joel reveals that he has paroxysmal nocturnal hemoglobinuria (PNH), in which his red blood cells break down, and that the only treatment is a bone marrow transplant. But he has no donor matches and no insurance coverage for a transplant. Orrora believes she has found her blood-mate in Joel, as vampires are spiritually monogamous. While Orrora goes out to find the killer, Olchescu breaks into Joel’s apartment, biting his neck to drink blood from it, before Orrora returns to kill Olchescu. Waking up in the hospital, Joel is given hemoglobin to replace his red blood cells from blood loss and his PNH. Orrora realizes that if she drinks Joel’s blood, she will assume his blood properties, so that she can be his bone marrow donor. So Joel does not become the sixth victim, and, after the bone marrow transplant from Orrora, Joel’s blood smell has changed and he heals faster.

As Richard notes, “It is odd that an individual with von Willebrand disease has to travel from Seattle to New York City to see a specialist when there are experts in his hometown.”

Linda Mooney is a bestselling author and retired Kindergarten and music teacher who lives on the Texas Gulf coast. She writes paranormal romances as Linda Mooney, naughty humorous romance as Carolyn Gregg, horror as Gail Smith, and elementary teacher workbooks as L.G. Mooney. Orrora was self-published in 2017. At 150 pages, it’s a quick read!

Save One Life: Cheers for 20 Years!

No matter how many dozens of presentations I’ve given over 32 years, being on a TV set, with only cameras to look at, makes me nervous! I wasn’t alone last Thursday evening; Chris Bombardier confided he felt the same way—and this is the guy who did the Seven Summits, including of course Everest! I told him I had no problem once being asked to speak in front of 100 Japanese hematologists in Hiroshima; live audiences are great. But teleprompters?

No matter. We went live Thursday evening to celebrate 20 years of bringing funding, service and hope to over 2,000 families with bleeding disorders in developing countries. Two things made the evening unfurl without a hitch: the fantastic team we have in the Save One Life office, especially the untiring efforts of Jodi Weeks and Karen Serevitch, and having the irrepressible Michael DeGrandpre as emcee!

See the entire show here.

The evening was a hit. We met at Charles River Media Group near Channel 5 headquarters in Needham Heights, Massachusetts. Seeing the behind the scenes working of putting on a live show was fascinating.

I had not seen the behind-the-scenes videos that were show throughout the evening: our program partners, sponsors, donors, board members, and even some of the beneficiaries that I had known as children… all grown up and sharing their successes thanks to Save One Life.

I had tried contacting one person, Lisa O’Connor, who originally had given me the idea of Save One Life back in 1997! I still had the yellow lined paper with her idea on it that she had sent me. I had saved it all these years. I just wanted her to watch, so she would know we were crediting her. She never replied. How shocked I was when I saw suddenly a video of her, thanking us all! I was floored, and grateful.

And I wanted to surprise my mother, by thanking her for the gifts she has given to me when a child: raising us to love children, showing how to help one another, and above all, raising me in a faith that puts charitable giving to the poor and suffering above all things. Again, the team surprised me totally, when, after my thanks to her, she was in a video, offering cheers to us!

Watch the event here!

We covered our programs, and the videos highlighted the impact these have made on those who participated: young men who have become doctors or engineers through our scholarship program; families that benefitted from our micro-enterprise grant program; children who participated in camp; and of course, over 78 countries getting factor from Project SHARE.

The event was also a fundraiser. Thanks to Michael’s infomercial skill set, we raised over $36,000 with an additional surprise: a $100,000 gift from on donor, the Muir family of California (formerly from Massachusetts, who I had known when our sons with hemophilia were born).

It was truly time to celebrate. After the show, and we said our thank yous and good-byes on air, we retired to the prep room, where champagne and cake awaited! We were elated and happy the program went off without a hitch.

Me: I never would have organized such a thing. It just isn’t me. But I see how a celebration like this allows everyone to share in the joy we have brought to others, and to allows us to celebrate each other as a community. It pumps us up to do more, serve more, and be more.

To Jodi and Karen, to Michael, to the Muirs, to the two donors who provided matches (Eric and Rich) to all our sponsors and donors and program partners: a huge thank you! We could not exist without you. We could not provide the needed help overseas without you.

Cheers to you all! And to 20 more years!

Riding to Remember

Today we hosted a 36-mile ride through scenic and historic Newburyport, Massachusetts, out to Plum Island and back, to honor the memory of the beloved Barry Haarde, and to raise money for the children and young people we serve through Save One Life. Barry started this biking craze in hemophilia, as he rode across the United States six different times, and raised about $250,000 for our nonprofit. When he passed away, we thought to keep his dream alive: to raise awareness of the need of those with bleeding disorders in developing countries, to raise funds to keep our program alive to help them, and to bring our community together.

It threatened rain, and did rain early in the morning, but by the time the riders showed up around 9 am, the sun was struggling through. It was a small group, only six riders, but dedicated! I could not join them this time as I have been dealing with chronic back issues for months, and while on the rebound after medical procedures, didn’t want to risk a flare up. I stayed behind with our team from Save One Life. Fueled by donuts and coffee, the riders took off!

When they returned two plus hours later, we learned that one dropped out due to a health concern, and one—my brother—stopped the ride to assist a painted turtle across the road. Hey, it’s Save One Life, and he did!

Thanks to all who participated, to remember Barry, and to remember our community members overseas in need.

• 

When Insurance Help Doesn’t Help

Miriam Goldstein

Director for Policy, Hemophilia Federation of America

Ed.: Your factor manufacturer probably has an insurance assistance program, to help with expensive copays. What could go wrong? From your insurance company: Checkmate.

Drug manufacturer copay assistance programs help many in the bleeding disorder community. People who live with bleeding disorders rely on medications—clotting factor or other treatments—to control bleeding and preserve their health. These drugs are essential, but expensive, and are needed on an ongoing basis. As a result, many people with bleeding disorders face the prospect of hitting their health insurance out-of-pocket maximums each year, and can reach that limit all at once with one order of factor. Yearly out-of-pocket maximums include copays, coinsurance, and deductibles, with amounts varying from plan to plan. While the Affordable Care Act (ACA) places an annual cap on cost-sharing amounts, that ceiling, depending on plan type, is high—in 2020, between $6,900 and $8,150 for an individual, or between $13,800 and $16,300 for a family. And the prospect of hitting it every year is daunting, to say the least.

Manufacturer copay assistance programs protect patients from this financial burden, and sustain their access to essential medications, by covering patients’ drug-related copay, coinsurance, and deductible expenses. Many programs will cover $12,000 and up in cost-sharing expenses per year. Eligible patients typically must have third-party commercial insurance to participate in these programs.

Unfortunately, in recent years a growing number of health insurers and pharmacy benefit managers (PBMs) have begun claiming that copay assistance programs incentivize patients to demand pricey brand name drugs instead of using more cost-effective generics. Citing the need to counter these incentives and contain costs, some health plans have been taking steps to limit the value of manufacturer copay assistance to patients—while maximizing the amount that the health plans themselves collect from those programs—through the use of “accumulator adjusters.”

What are accumulator adjusters?

Accumulator adjuster programs are used by health insurance plans to limit the value of manufacturer copay assistance programs. When an accumulator is in place, the health plan accepts the manufacturer copay assistance—which is supposed to pay for the patient’s out-of-pocket drug costs—but then doesn’t credit that amount toward the patient’s deductible or out-of-pocket maximum. The health plan draws down the full value of the copay assistance as prescriptions are filled; but then it “adjusts” or resets what is credited to the patient’s cost-sharing obligations back to zero. As a result, a person with a bleeding disorder will still have to personally pay deductibles, copays, and other out-of-pocket expenses, up to the yearly out-of-pocket maximum. At the same time, the health plan appropriates the full amount of the copay assistance—assistance that was supposed to help the patient!

Accumulators leave bleeding disorder patients in a tough financial bind. If this happens to you, please check out the options listed in Hemophilia Federation of America’s (HFA) online Resource Library.¹ You may be able to get financial help with your copays from a third-party, charitable nonprofit patient assistance fund.² Health plans sometimes will not apply accumulators to copay assistance provided by charitable organizations, and will still credit the charitable assistance to patient deductibles and out-of-pocket maximums.

HFA is working with other patient advocacy groups to educate health plans and PBMs about the dangers of accumulators. We urged federal regulators to ban the use of accumulators, where patients don’t have the option to choose a generic drug (as is the case with bleeding disorder patients). Unfortunately, the US Department of Health and Human Services (HHS) rejected this request. In May 2020, HHS finalized a rule³ that allows health insurers to continue using accumulator adjusters for the coming plan year.

HFA and allied groups will continue to advocate for federal and state policies that prioritize patient access to their prescription medications. In the meantime, we need to hear from you! If you learn that your copay assistance will no longer be credited toward your deductible or out-of-pocket maximum, please share your story with HFA’s Project CALLS.⁴

Collecting data on the impact of accumulators allows us to make a case for change when we ask lawmakers to take action to protect patients from these harmful health plan tactics.

(Originally published in PEN’s Insurance Pulse, 2020)

Miriam Goldstein is director for policy at Hemophilia Federation of America, where her work includes monitoring and analyzing federal legislation and regulations impacting patient access to care; insurance, Medicaid, and Medicare issues; and blood and product safety. Miriam lives in Arlington, Virginia, and is the mother of two adult sons with hemophilia.

1. hemophiliafed.org/resource-library/additional-resources/navigating-patient-assistance-programs 2. Patient assistance funds that offer financial assistance to eligible bleeding disorder patients include the Assistance Fund, Patient Access Network (PAN) Foundation, and Patient Services, Inc. (PSI). 3. US Dep’t of Health and Human Services, Notice of Benefit and Payment Parameters for 2021, 85 Fed. Reg. 29164 (May 14, 2020). 4. projectcalls.org