Laurie Kelley

The Copay Surprise

Laurie Kelley June 25, 2023

The Texas Bleeding Disorders Coalition recently announced—with pride— that HB 999 passed unanimously, 31-0, in their Senate. This bill will eliminate copay accumulator adjuster programs on state health plans in Texas. Patients with many chronic conditions and no generic options will no longer be penalized by CAAPS and will have access to their life saving medication. This is the result of the hard work of so many over the last two legislative sessions.

What are accumulators, and why are they so important to those with bleeding disorders? Read a two-part article by Paul Clement to learn more.

Insurance Company Efforts to Thwart
Patient Assistance Programs

By Paul Clement

Hemophilia therapies—both factor and emicizumab—are extraordinarily expensive, potentially costing several hundred thousand dollars per year. Families must pay monthly premiums to buy health insurance coverage. They also must budget for the plan’s deductible (the amount you must pay before the plan starts covering some of your health care costs). And they must pay coinsurance on factor purchases (the percentage of the cost you must pay out-of-pocket [OOP], which may vary from 10% to 40%). These expenses must be paid until families reach their out-of-pocket maximum for the year, after which the plan picks up all costs.² For a family with a child with severe hemophilia, this means budgeting for as much as $18,000 out-of-pocket, often within the first three months of the year. Few families can afford this expense.

To help meet these OOP expenses, factor manufacturers offer financial assistance to patients using their product, with annual assistance limits varying between $12,000 and $20,000, depending on the company and the product. Assistance is typically offered in the form of a card, often referred to as a “copay card”, “copay coupon card” or “savings card.” The card is presented at the time of service—such as to the pharmacist when picking up factor. The pharmacist will process the prescription using your insurance information as the primary payer and the copay card information as the secondary payer.¹

Patient assistance programs are a godsend for families trying to make ends meet. So what’s the problem?

Insurers view these programs negatively, as a marketing tool for pharmaceutical companies to entice consumers to select more expensive brand-name drugs instead of lower-cost generic versions. This viewpoint may be valid for some drugs, but it doesn’t apply to factor or emicizumab, because there are no lower-cost generic forms of either type of drug. Insurance companies selling commercial insurance may also offer employers “cost savings” programs which thwart the use of patient assistance programs. And employers may opt to implement these programs, not realizing that, while saving money, they are also throwing some of their employees into financial ruin.

There are two insurance programs which target patient assistance:

Accumulator Adjuster Programs (AAP): The AAP are also known as copay accumulator programs. These insurance plan programs do not count a pharmaceutical manufacturer’s copay assistance payments towards the patient’s deductible or OOP maximum. The manufacturer copay card pays for prescriptions until the maximum value on the card is reached. Once it’s reached, your OOP costs begin counting toward your annual deductible and OOP maximum.

In a normal scenario involving copay assistance and no AAP in place, you would use the copay card to pay down your deductible and pay the coinsurance on your factor, both of which normally count toward the annual OOP maximum. Ideally, by the time the copay card is used up, you will have reached your OOP maximum, or be very close to it, and the insurance company will then pick up all costs for the year.

With an AAP in place, you would initially not see anything amiss, and the copay card would appear to be working as usual, and you would have no OOP costs for the first few factor shipments.

But then, usually around the third or fourth factor shipment, the copay card is used up and you are unexpectedly hit with the “copay surprise”—a bill for several thousand dollars. Only then do you learns that your deductible and coinsurance have not been paid down by the copay card and you are now on the hook for several thousand dollars in costs each month until you reach your out-of-pocket maximum for the year.

Many hemophilia patients report not knowing their insurance plan implemented an AAP until they experienced the copay surprise. That’s because most health care plans are not up front about implementing an AAP and often use deceptive language, describing the AAP as a “benefit,” when, in fact, it is just the opposite.³

Thanks to advocacy efforts by nonprofit foundations like the NHF and HFA, sixteen states have banned AAPs, and a few other states have similar legislation in the works. Because of pushback on AAPs, insurance companies over the last few years have been switching to a different type of program to limit copay assistance, called a copay maximizer.

Next week: Copay maximizers, and more

Some programs have restrictions, such as income limits, on who may qualify for their program. Assistance in meeting OOP expenses may also be covered by private organizations.
Some plans, usually HMO plans, may have no deductible or coinsurance. Most commercial health insurance plans have both an annual deductible and coinsurance.
BlueCross BlueShield of Texas calls it “Coupons for Individual Plan Members Only. ”CVS Caremark calls it “True Accumulation.” Express Scripts calls it “Out of Pocket Protection.” United Healthcare calls this “Coupon Adjustment: Benefit Plan Protection.”

Mental Health During [Post] Coronavirus

Laurie Kelley May 21, 2023

March is Mental Health Awareness Month. Here’s an article first published in PEN in 2020 that can help when you face stress.

by Debbie de la Riva

The collective pursuit to control the spread of coronavirus has resulted in an enormous challenge for the bleeding disorder community. The economic fallout of sheltering in place has affected our need for a steady income, health insurance, access to medical treatment, and—equally important—our access to each other. The degree of impact on our families is hard to determine, but it’s safe to say this pandemic has been very stressful.

But stress in not a new concept for the bleeding disorder community. In fact, our community has been dealing for years with the emotional angst of fighting for what is needed to manage our medical conditions. Remember our fight for safer products, or our fight for laws to protect us from job discrimination? Today’s battle, for our community, is to deal with the stress resulting from the pandemic. So let’s follow the same steps we have taken so many times before: get informed, find our resources, and stick together.

Get Informed

To learn to manage stress, we need to become familiar with how our central nervous system works. Our brain comes pre-wired with an intricate system that functions to keep the rest of our body alive. This is the limbic system, which provides the “fight-or-flight” response. If the brain determines that the body is in danger, it initiates a chemical chain reaction that gets the body ready to either fight the challenge or run from it. This response begins when sensory information is picked up by a part of the brain called the amygdala. If the amygdala determines there is a threat, it signals other parts of the brain and body to release hormones such as adrenaline and cortisol. These hormones instruct the heart and lungs to increase their output in order to create the energy needed to meet the challenge. This fight-or-flight response is extremely effective when a person needs physical energy to avoid a danger such as jumping out of the way of a car. But most of today’s challenges are emotional, and they don’t require the extra energy provided by the stress response. The result is a steady supply of stress hormones circulating in the body at all times. The image that comes to mind is a person standing next to an IV pole and steadily receiving drips of adrenaline and cortisol. In others words, our body remains in a constant state of high alert.

The good news: We do have the ability to slow down the stress response. Since we now know that the brain is constantly scanning our body and our environment to determine if it should go into stress or relaxed mode, we can intentionally offer cues to indicate that we’re not in danger. In fact, this is how meditation works. The first goal of meditation is to slow down your breathing rate. This is important, because once your brain receives the signal that your breathing rate is lowered, it will interpret this to mean that you’re not in danger, and will turn off the stress response. The second goal of meditation involves your focus. You want to be focusing on the present—instead of musing about the past or anticipating the future—and you want to intentionally focus on words or images that evoke feelings of peace or happiness.

You can bring up images of when you felt safe and happy, or you can think of words that reassure you. This tool is like anything else in life: it requires practice and commitment. But eventually, you’ll find that you can truly create a sense of well-being, no matter what’s going on in your life. Sound too good to be true? Do you need proof? Ask yourself how you feel when you’re watching a scary movie, and compare that to how you feel when you’re watching a romantic comedy. In other words, what we focus on creates how we feel inside. That same principle is at work when we intentionally think about what we are grateful for, as opposed to what we lack or what we don’t like about our lives.

Find Resources

National Hemophilia Foundation (NHF) and Hemophilia Federation of America (HFA) have created content to help people in the bleeding disorder community deal with both physical and emotional impacts of the pandemic and stress. Visit:

National Hemophilia Foundation hemophilia.org

Hemophilia Federation of America hemophiliafed.org

You can also purchase proven self-help workbooks on stress reduction at New Harbinger Publications: newharbinger.com

And yes, there is an app for learning to relax! Appropriately called the Calm app, it has hundreds of meditations and master classes on stress management: calm.com

You can find these resources and many others by visiting the Mental Health Matters Too website: mentalhealthmatterstoo.com

Seek Out Others

It didn’t take long for our community to figure out how to be connected virtually. Though it isn’t the same as being in a room together, it is nice to see familiar faces and get a chance to let someone know you are there for them.

Take a moment to check in with yourself, because it’s very easy to feel lonely in isolation. If you find that you’re exceptionally lonely, depressed, or anxious, it always helps to talk to someone trained to help you feel understood and supported. Online platforms like Talk Space and Better Help are reporting an exponential increase in the number of requests for counseling sessions right now.

Look for Purpose

One of the best ways to combat the feeling of helplessness that comes with a crisis is to look for a way you can help others. This sense of purpose gives people some control, and helps them feel productive and useful. For me, contributing to Save One Life is one way I fulfill my need to have purpose in my own life. Each month, I have a small sense of satisfaction knowing that there are three young people with hemophilia who feel that someone else on this planet sees them and cares about them.

So, whether it’s meditating, talking with someone, or just being there for another human, there are ways to combat stress. We will get through this pandemic as a community, the way we always have. We will get informed, find resources, and seek out each other.

Debbie de la Riva, LPC, has been an active member of the bleeding disorder community since the birth of her son with severe hemophilia 25 years ago. She served as executive director of the Lone Star Chapter of NHF, was a co-chair of an NHF Annual Meeting, received a Ryan White Award for Advocacy Excellence, and has presented on mental health issues to chapter and national organizations. In 2018, Debbie founded Mental Health Matters Too as a way of combining her degree as a licensed professional counselor with her passion for helping community members who struggle with mental health challenges. To contact Debbie: www.mentalhealthmatterstoo.com or debbie@mhmtoo.com

Originally published in the Parent Empowerment Newsletter (PEN) August 2020

©LA Kelley Communications, Inc. www.kelleycom.com Reprinted with permission.

A Mother’s Day Reflection

Laurie Kelley May 14, 2023

While flower gifs and happy photos abound today on Mother’s Day, and hemophilia moms wish one another a happy day, a couple of thoughtful mothers on Facebook remind us with kind words that it’s not that kind of celebratory day for many mothers. There are mothers who have lost their children to hemophilia, or HIV; some to suicide. I know one mother who lost her young man with a bleeding disorder in the Thousand Oaks mass shooting in California. And there is just the loss of babyhood… our children have grown up, moved away, no longer “need” us. Loss is loss.

I recall this wonderful essay from years ago, from Anna Quindlen, Newsweek columnist and author. It’s a great essay to remind us to enjoy the journey while we can. Tomorrow may be too late. And it’s never too late to enjoy now!

Anna Quindlen, from Loud and Clear, Ballantine Books; Reprint edition, March 29, 2005.

“All my babies are gone now. I say this not in sorrow but in disbelief. I take great satisfaction in what I have today: three almost-adults, two taller than I am, and one closing in fast. Three people who read the same books I do and have learned not to be afraid of disagreeing with me in their opinion of them, who sometimes tell vulgar jokes that make me laugh until I choke and cry, who need razor blades and shower gel and privacy, who want to keep their doors closed more than I like. Who, miraculously, go to the bathroom, zip up their jackets and move food from plate to mouth all by themselves. Like the trick soap I bought for the bathroom with a rubber ducky at its center, the baby is buried deep within each, barely discernible except through the unreliable haze of the past.

“Everything in all the books I once poured over is finished for me now. Penelope Leach, T. Berry Brazelton, Dr. Spock. The ones on sibling rivalry and sleeping through the night and early-childhood education, have all grown obsolete. Along with Goodnight Moon and Where the Wild Things Are, they are battered, spotted, well used. But I suspect that if you flipped the pages dust would rise like memories. What those books taught me, finally, and what the women on the playground taught me, and the well-meaning relations–what they taught me, was that they couldn’t really teach me very much at all.

“Raising children is presented at first as a true-false test, then becomes multiple choice, until finally, far along, you realize that it is an endless essay. No one knows anything. One child responds well to positive reinforcement, another can be managed only with a stern voice and a timeout. One child is toilet trained at 3, his sibling at 2.

“When my first child was born, parents were told to put baby to bed on his belly so that he would not choke on his own spit-up. By the time my last arrived, babies were put down on their backs because of research on sudden infant death syndrome. To a new parent this ever-shifting certainty is terrifying, and then soothing. Eventually you must learn to trust yourself. Eventually the research will follow. I remember 15 years ago poring over one of Dr. Brazelton’s wonderful books on child development, in which he describes three different sorts of infants: average, quiet, and active. I was looking for a sub-quiet codicil for an 18-month old who did not walk. Was there something wrong with his fat little legs? Was there something wrong with his tiny little mind? Was he developmentally delayed, physically challenged? Was I insane? Last year he went to China. Next year he goes to college. He can talk just fine. He can walk, too.

“Every part of raising children is humbling, too. Believe me, mistakes were made. They have all been enshrined in the, ‘Remember-When- Mom-Did Hall of Fame.’ The outbursts, the temper tantrums, the bad language, mine, not theirs. The times the baby fell off the bed. The times I arrived late for preschool pickup. The nightmare sleepover. The horrible summer camp. The day when the youngest came barreling out of the classroom with a 98 on her geography test, and I responded, “What did you get wrong?” (She insisted I include that.) The time I ordered food at the McDonald’s drive-through speaker and then drove away without picking it up from the window. (They all insisted I include that.) I did not allow them to watch the Simpsons for the first two seasons. What was I thinking?

“But the biggest mistake I made is the one that most of us make while doing this. I did not live in the moment enough. This is particularly clear now that the moment is gone, captured only in photographs. There is one picture of the three of them, sitting in the grass on a quilt in the shadow of the swing set on a summer day, ages 6, 4 and 1. And I wish I could remember what we ate, and what we talked about, and how they sounded, and how they looked when they slept that night.

“I wish I had not been in such a hurry to get on to the next thing: dinner, bath, book, bed. I wish I had treasured the doing a little more and the getting it done a little less.

“Even today I’m not sure what worked and what didn’t, what was me and what was simply life. When they were very small, I suppose I thought someday they would become who they were because of what I’d done. Now I suspect they simply grew into their true selves because they demanded in a thousand ways that I back off and let them be. The books said to be relaxed and I was often tense, matter-of-fact and I was sometimes over the top. And look how it all turned out. I wound up with the three people I like best in the world, who have done more than anyone to excavate my essential humanity. That’s what the books never told me. I was bound and determined to learn from the experts. It just took me a while to figure out who the experts were.”

Waste not, want not

Laurie Kelley May 7, 2023

According to Wikipedia, and many other sites, the US is the largest consumer group in the world, with spending about 69% of our GDP. We are the engine that drives global progress. With consumerism comes waste, of course, and we also reign in that. We generate more waste than any other nation with 4.5 pounds of “municipal solid waste (MSW)” per person per day.

When it comes to hemophilia, we produce the most factor, and we use the most factor. We represent only 4% of the world’s hemophilia population but consumer about 33% of the world’s factor. Do we also waste it?

I think we used to. But now, we have a means to recoup unwanted and unused factor. In 1996 I started collecting factor that normally would have been destroyed. What started as 30,000 IU (back then, about $30,000 worth) has grown exponentially. Save One Life, the nonprofit I founded, collects about 7 million IU annually. Its current market value must be about $14 million if the donations instead were sold commercially. And it’s shipped out to about 35 countries each year (70 different ones in total).

And I collect the rest.

I can’t bear to waste anything and am always looking for ways to provide value and keep from adding to our consumer waste. It was amazing to learn how much factor is out there that no one wants.

Why is that? New products primarily. It used to be donations from loved ones who died from HIV; families would donate their factor. Then it was inhibitors; if ITT didn’t work, if a standard factor didn’t work, people would send to me. Now it’s mostly new products, which are coming on fast and furious.

How fast and furious? When I returned home from two weeks in the Caribbean (where I hand delivered about 250,000 IU), I found I had another 1 million IU shipped to me. In two weeks.

In just two months, March and April, I was donated 2 million IU, all from specialty pharmacies, patients and a few HTCs. With the new products and gene therapy, this would be a banner year for donations.

And what do I do with it? I ship it to patients all over the world. To some countries where there are no hemophilia programs or national organizations at all (like many of the Caribbean islands). To places where factor is available, like in Vietnam, but only at the major cities and hospitals, far from where many of the patients live. Thanks to FedEx, we get the factor there in no time.

It has been a godsend for so many. So I want to thank all of you for your donations. With each donation, I send a personal thank you note and a photo of a child you helped, like these boys below.

Consumerism isn’t all that bad, when we can truthfully pledge, “Waste not, want not.” Lives depend on it.

The Poem of a Prince with Hemophilia

Laurie Kelley April 23, 2023

Prince Leopold (1853 – 1884), Duke of Albany. (Photo by Hulton Archive/Getty Images)

The first prince with hemophilia that we know of historically was Leopold, youngest son of Queen Victoria, and eighth of nine children. He was born on April 7, 1853. His birth was remarkable because he was the first royal child delivered with the aid of chloroform. This was administered by one of my personal heroes, Dr. John Snow, who also cracked the mystery of cholera in 1854 in London, during a savage outbreak, and pretty much launched the science of epidemiology and public health.

And because its National Poetry Month, we will publish a poem to Prince Leopold! This poem is from Colin S.K. Walker’s (Editor) 1993 book William McGonagall: A Selection. William McGonagall, born in 1825 in Edinburgh, published three collections of verses, and died in 1902. McGonagall is a terribly mocked Scottish poet. As the editor explained: “McGonagall’s poetry is undeniably dreadful, always sinking to new depths, just when you think you have hit rock bottom.” Ouch!

So yeah, it’s a pretty bad poem! But it is about Prince Leopold, a prince who had hemophilia, who died at age 30, after bleeding from a fall. At his funeral they played one of my favorite hymns (and that of Sir Ernest Shackleton), “Lead Kindly Light.” Let’s hope a better poem is written for King Charles III’s Coronation next month!

THE DEATH OF PRINCE LEOPOLD

ALAS! noble Prince Leopold, he is dead!
Who often has his luster shed:
Especially by singing for the benefit of Esher School,-
Which proves he was a wise prince, and no conceited fool.

Methinks I see him on the platform singing the Sands o’ Dee,
The generous-hearted Leopold, the good and the free,
Who was manly in his actions, and beloved by his mother;
And in all the family she hasn’t got such another.

He was of delicate constitution all his life,
And he was his mother’s favorite, and very kind to his wife,
And he had also a particular liking for his child,
And in his behaviour he was very mild.

Oh! noble-hearted Leopold, most beautiful to see,
Who was wont to fill your audience’s hearts with glee,
With your charming songs, and lectures against strong drink:
Britain had nothing else to fear, as far as you could think.

A wise prince you were, and well worthy of the name,
And to write in praise of thee I cannot refrain;
Because you were ever ready to defend that which is right,
Both pleasing and righteous in God’s eye-sight.

And for the loss of such a prince the people will mourn,
But, alas! unto them he can never more return,
Because sorrow never could revive the dead again,
Therefore to weep for him is all in vain.

‘Twas on Saturday the 12th of April, in the year 1884,
He was buried in the royal vault, never to rise more
Until the last trump shall sound to summon him away.

When the Duchess of Albany arrived she drove through the Royal Arch,-
A little before the Seaforth Highlanders set out on the funeral march;
And she was received with every sympathetic respect,
Which none of the people present seem’d to neglect.

Then she entered the memorial chapel and stayed a short time
And as she viewed her husband’s remains it was really sublime,
While her tears fell fast on the coffin lid without delay,
Then she took one last fond look, and hurried away.

At half-past ten o’clock the Seaforth Highlanders did appear,
And every man in the detachment his medals did wear;
And they carried their side-arms by their side,
With mournful looks, but full of love and pride.

Then came the Coldstream Guards headed by their band,
Which made the scene appear imposing and grand;
Then the musicians drew up in front of the guardroom,
And waited patiently to see the prince laid in the royal tomb.

First in the procession were the servants of His late Royal Highness,
And next came the servants of the Queen in deep mourning dress,
And the gentlemen of his household in deep distress,
Also General Du Pia, who accompanied the remains from Cannes.

The coffin was borne by eight Highlanders of his own regiment,
And the fellows seemed to be rather discontent
For the loss of the prince they loved most dear,
While adown their cheeks stole many a silent tear.

Then behind the corpse came the Prince of Wales in field marshal uniform,
Looking very pale, dejected, careworn, and forlorn;
Then followed great magnates, all dressed in uniform,
And last, but not least, the noble Marquis of Lorne.

The scene in George’s Chapel was most magnificent to behold,
The banners of the knights of the garter embroidered with gold;
Then again it was most touching and lovely to see
The Seaforth Highlanders’ inscription to the Prince’s memory:

It was wrought in violets, upon a background of white flowers,
And as they gazed upon it their tears fell in showers;
But the whole assembly were hushed when Her Majesty did appear,
Attired in her deepest mourning, and from her eye there fell a tear.

Her Majesty was unable to stand long, she was overcome with grief,
And when the Highlanders lowered the coffin into the tomb she felt relief;
Then the ceremony closed with singing “Lead, kindly light,”
Then the Queen withdrew in haste from the mournful sight.

Then the Seaforth Highlanders’ band played “Lochaber no more,”
While the brave soldiers’ hearts felt depressed and sore;
And as homeward they marched they let fall many a tear
For the loss of the virtues Prince Leopold they loved so dear. (pp. 89-93).