Laurie Kelley

“God has kept me alive…” to Serve

Laurie Kelley July 9, 2023

This essay was submitted by someone I have known since my first visit to Zimbabwe, in 2000. It is sad, and details a life of loss, and yet a life of hope. Please always keep in mind that in most developing countries, access to factor is almost impossible. If you think you have factor to donate, contact me, and I will help find a home for it. ~ Laurie, laurie@kelleycom.com

My name is Nqobizitha Ndlovu, which [is of Zulu origin] and means “Conqueror” in English. I’m 34 years old, living with hemophilia A since birth. I was born and live in Zimbabwe.

I was born into a family of four boys, of which I am the eldest. Growing up together with my siblings, life has not been rosy; it has been pain after pain, suffering because of hemophilia and life challenges as well. I am coming from a very poor family as my father used to do menial jobs to sustain us.

Zimbabwe’s economy is in shambles and the health system is in a very bad state. The government hospitals have no diagnostic or any other important machines, or they are not working, if there is any at a single hospital servicing the whole country. No painkillers; blood transfusion is very expensive and it cost more than $100 American dollars for a single pint of blood. Only private hospitals can offer such services as diagnostics at a very high cost. That is a life of hemophiliacs in Zimbabwe.

My young late brothers and I endured a lot of pain considering our condition. We have been friends of the hospital quiet often and countless times. We have been relying on donated factor VIII ever since, with the help of Laurie Kelley. It has been a struggle in our journey of life as my parents struggled very hard to cater for our needs.

My parents and we were sharing a single bedroom house. School was another challenge for us as we used to walk for almost four hours going and another four hours coming back. That contributed to bleeding easily. Regardless of that we were excelling at our studies.

In 1996 I lost one of my young brothers through tonsil bleeding; he was two years old and the third born. Mthokozisi was his name, which means “happiness” in English. After bleeding for three days from his tonsils, he unfortunately passed on.

The year 1998 was another bad one for me again. We had just knocked off from school. My young brother Khumbs and I, and other kids, were playing on our way home. Khumbs fell on his knee from high rocks. From there he couldn’t even move his leg as he had hit with a knee down. All the other kids left us there as I struggled to carry him on my back. We arrived home very late and Khumbs was in deep pain. He could not go to school anymore for at least two years. Khumbs’s knee developed an infection which resulted in his leg being amputated. Khumbs lost his leg like, just like that.

The year 2002 was another bad one for me again as I lost the person whom I had been relying on when I was not feeling well. My mom passed on as well. I was left broken and helpless at the same time.

In 2003 I was still digesting the pain of losing my mother, when my father passed on. It became sorrow on top of another sorrow. I was really affected psychologically, physically and socially, and it also affected my schoolwork at the same time. I lost concentration on my studies. My health dwindled badly.

In 2009 my younger brother Khumbs had an internal bleed which resulted in him passing on that year on November 9. Laurie Kelley had tried to source some factor VIII for him, which arrived in the evening. But he passed on in the morning. Now I had nowhere to go— no one to share my pain with as he was the closest to me.

In 2017 I was involved in a horrific incident where I lost one of my eyes. I was admitted for one and a half a months in the hospital and bled for 21 days nonstop. I almost lost my life, which became a miracle to be alive according to the doctors at Parirenyatwa, Zimbabwe’ s biggest hospital.

During the time at the hospital it was discovered that I had developed factor VIII inhibitors. Laurie Kelley has done a lot for us that I cannot count it all. I am now using the NovoSeven which I always get from Laurie Kelley.

Fast forward to January 2023. My one and only brother that I was left with also passed on through throat injuries and bleeding. He could not access factor VIII at the right time because he was in a remote area. That was the end of all my family members as I am now alone, with my son Brooklyn, a nonhemophiliac who is eight years old.

I was recently voted to be the Zimbabwe Haemophilia Association as vice president. It’s a nonprofit organization. I want to serve people with hemophilia in Zimbabwe and any other bleeding disorders with all my heart. I have seen it all and I believe the high God has kept me alive up to this far to do that. We are doing all possible ways to reach out to every corner, to save some souls out there.

Co-Pay Caveats

Laurie Kelley July 2, 2023

The Texas Bleeding Disorders Coalition announced recently with pride that HB 999 passed unanimously, 31-0, out of the 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 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 the second of a two-part article by Paul Clement to learn why.

Insurance Company Efforts to Thwart Patient Assistance Programs Part 2

By Paul Clement

Copay Maximizeris also known as variable copay program. Maximizer programs are a recent development in insurance, and are similar to Accumulator Adjuster Plans (AAP) in that they do not count the manufacturer’s copay assistance payments toward the patient’s deductible or out-of-pocket (OOP) maximum. They differ in that the maximum value of the manufacturer’s card is divided by twelve and applied evenly throughout the benefit year and there are no OOP costs for factor. Plan members are not hit with a “copay surprise” (see last week’s blog) with a maximizer program, but they are still on the hook for paying their annual deductible and coinsurance on all other drugs and services until they reach their OOP maximum for the year. And like AAPs, copay maximizer programs often use deceptive language in descriptions of the program, as insurance companies deliberately attempt to mislead plan members by claiming they are a benefit.

To implement an AAP or copay maximizer, the health plan requires a member to enroll in a separate AAP or copay maximizer program. The plan then deems certain specialty drugs, such as factor, to be “non-essential health benefits.” Non-essential drugs are still covered by the plan, but they are not subject to the Affordable Care Act (ACA) Essential Health Benefit requirements and can be removed from the OOP maximums required by the ACA, which in turn, enables the health plan to completely deplete all of the patient assistance funds!

Depleting all of the plan member’s assistance funds puts the sustainability of the patient assistance programs at risk. Although maximizer programs avoid the AAP copay surprise, they negate the intended benefit of patient assistance programs—and remove a safety net for patients who need expensive drugs like factor but cannot afford them.

What if you, a plan member, do not want to sign up for an AAP or maximizer program? Many plans make their AAP or maximizer program a “benefit” you can’t refuse. If you do not enroll, you are subject to a higher coinsurance, sometimes as much as 50%, and because the plan has deemed factor a non-essential health benefit, the coinsurance, along with your deductible, does not count towards the annual OOP maximum. This would potentially expose you to OOP costs exceeding $100,000 or more a year—not signing up is obviously not an option if you need factor. And even though this tactic would result in you paying many times more than the permissible annual OOP limits under the ACA, insurance companies are claiming the practice is legal. Their position is sure to be tested in the courts in coming years.

Both AAPs and maximizers reduce the health plan’s cost by shifting drug costs to manufacturers and plan members. High costs for drugs often lead to poorer health outcomes as a result of members avoiding use of the specialty drug—and this increases the risk of complications (like joint damage for people with hemophilia), potentially resulting in higher costs to the health care system.

And there’s one more threat to co-pay assistance.

Alternative Funding Companies (AFCs) are also known as patient advocacy programs or specialty carve-out programs. These companies include some pharmacy benefit managers (PBMs) and several third-party vendors which offer their services to health plan sponsors, such as employers that fund their own health coverage, promising to lower their drug costs. If an employer signs on, the AFC eliminates or “carves out” specialty drugs, like factor, from the health plan’s formulary and deems them “non-essential health benefits” to bypass ACA laws and regulations, including limits on OOP costs. Usually, the health plan member does not know this has happened until they place an order for their specialty drug and received a denial for the prescription or are charged a high coinsurance because the drug is now “non-essential.”

At this point, the AFC steps in and offers to “rescue” the plan member (from a problem the AFC itself created)—you‚— by providing them the specialty drug at little or no cost. They then collect detailed personal information from you and, using a database of copay assistance programs, enroll you in multiple assistance programs, both pharmaceutical and private patient assistance programs (which is not insurance), to help cover the cost of the drug. AFC vendors also usually require you to sign a patient authorization form certifying that you are not enrolled in a health care program that pays for any portion of your prescription drug costs, in order to qualify you for some types of patient assistance (a certification which is usually patently false). When the funding runs out or if you are denied assistance, the drug is then usually covered by the plan using a “formulary exception process.” This means you must petition the insurer to cover the drug once again. And like maximizers, the “offer” to enroll with the vendor is not one you can refuse: those that do refuse are hit with exorbitant coinsurance rates they cannot afford.

Alternative funding companies are widely viewed by patient advocacy organizations as unethical because they deplete funds that have been allocated for people who truly need them. They flout the intent of patient assistance programs, which were created to help patients who genuinely cannot afford the cost of care—not to save money for plan sponsors. In addition, the process of removing drugs from the formulary, denying prescriptions, collecting personal data, enrolling patients in assistance programs, arranging for delivery of specialty drugs and then, later, returning them to the plan, all involve delays in which patients cannot access their therapy—delays which can pose a threat to patient health and even their life. These companies also impact the sustainability of vital patient assistance programs, with some companies responding by reducing the amount of assistance they provide or eliminating their patient assistance programs altogether.

Like AAPs and maximizers, alternative funding vendors are not transparent: they use duplicitous, deceptive language, describing their programs as a “benefit” and “advocacy services”—and they deceive both employers sponsoring health plans as well as plan members. (Many employers do not realize what they are signing up for.)

If you suspect you are being asked to sign up for one of these programs, contact your local hemophilia organization, or the NHF or HFA for assistance. And if you have a commercial health insurance plan and are experiencing a disruption in services or exorbitant coinsurance, including your factor being labeled as “non-essential,” contact your employer and let them know what is happening and how it is affecting your life—they may not realize how their health plan choices affect you.

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

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.”