Teaching Your School-Age Child About Hemophilia

Published in August 2018 PEN

With the start of the school year comes new teachers, nurses, and caretakers for your child. You may be explaining to many adults what hemophilia is and how they should properly respond if your child has an issue. But, how do you go about teaching your child about their hemophilia? In this excerpt from our latest issue of PEN, we delve into how children understand their bleeding disorders and what you can do to help present information  for them to digest. 

Teaching Your School-Age Child About Hemophilia 

One of the biggest challenges we have as parents of children with hemophilia is teaching our children about their disorder. We often use words like hematoma, factor, and deficiency; and concepts like prophy, coagulation, and heredity. But children understand these words and concepts very differently than adults do.

If you don’t know how your child’s mind works at various stages of his development, then teaching him about hemophilia becomes hit-or-miss. But when you know how he thinks, you can tailor information in a way that he can easily understand. So to teach your child about hemophilia, you need to know how he processes his world in general, and hemophilia concepts in particular.

The School-Age Child’s Thinking Tools

Between ages 7 and 11, the school-age child is in a fascinating stage of cognitive development. “Cognitive” refers to how he thinks, how he processes incoming information about his world—basically, his ability to think logically. Just as he has a skeletal structure that develops as he grows, he also has a mental structure that develops as he matures, filtering information in a way he can grasp.

Your child’s mental structure is characterized by five major thinking tools that are constantly evolving:

Causal thinking: Figuring out when something causes something else, using a step-by-step process. A preschooler doesn’t typically think step-by-step.

Internalized thinking: Moving from understanding his world mainly through his senses—where things happen outside him—to realizing that things can happen inside him.

Gradient thinking: Knowing that the world isn’t just polar opposites, like good guys and bad guys. There are now shades of gray, degrees of intensity. A good guy might do something bad. Your child can also distinguish parts from the whole.

Empathic thinking: Starting to see the world from another’s point of view.

Time: Understanding that he doesn’t exist just in the present, but that he has a past and a future.

For understanding hemophilia, the most important of these five thinking tools may be causal thinking. Your child can now try to figure out how one thing causes another. Like…What causes bleeding? A blood clot? What is genetic transmission? It’s hard to explain these concepts when your child doesn’t understand causality. These are more sophisticated thinking tools than he had as a preschooler, yet a school-age child, ages 7 to 11, is most comfortable using his new thinking tools on things and places he knows best—the tangible, visible world. So let’s see how he uses these thinking tools on various topics in hemophilia, starting with blood.

How He Understands Blood

Unlike a preschooler, your school-age child understands the concept of the whole and its parts. So you can explain blood in terms of what it’s made of. Children between ages 7 and 9 believe that blood is a red liquid, but also that it’s composed of “stuff—water, food and energy.” Children between ages 9 and 11 tend to describe blood in more abstract terms. “It’s cells. Little roundish stuff. They’re red and blue.” A child develops from concrete to more abstract thinking, so this is perfectly acceptable!

Now you can introduce the idea that blood has components: white blood cells, red blood cells, and platelets. While preschoolers focus on things outside the body, mainly what they can see, hear, and feel, a school-age child realizes there are things inside him that he can’t see. So he’s ready to learn about simple blood components, especially those related to his hemophilia.

How He Understands Hemophilia

Because he understands a whole and its parts, your child can now categorize things. A preschooler might describe hemophilia as “blood,” or “something I have,” but a school-age child can classify hemophilia as a “blood disorder,” or “when blood doesn’t stop bleeding.”

He also progresses from describing hemophilia as his own specific injury (“It’s when I get a hurt knee”) to seeing it as a condition (“It’s when someone gets hurt and bleeds a lot”). This is the empathic thinking tool: he knows he is not the only one to have hemophilia. He now says that hemophilia is when “boys with hemophilia have to go to the hospital sometimes.” Compare this to the preschooler reply, “When I have to go to the hospital.”

Your child also has matured from an external to a more internal focus. A preschooler might say, “Hemophilia is bruises,” but a school-age child will say, “My blood doesn’t work right.” What is it that doesn’t work right? Well, he understands the concept of a whole and its parts, and he’s ready to know that blood is composed of parts. So he can deduce that hemophilia means “something’s missing” in his blood. Some children say that they have “lost” something, or that their blood is “too thin.” These answers reflect the “something’s missing” idea. For example, “It’s when you’re missing some factors that help to make it so if you slam your knee against something it doesn’t swell up as much. You’ll have to replace the factor.”

Misconceptions and medical inaccuracies abound as your school-age child struggles to understand hemophilia. “It’s a blood disease. You lose part of your blood and you need to get more blood.” At this stage, what’s important is not so much that his answers are right or wrong, but how he arrives at his interesting conclusions.

So teach your child that hemophilia is a “blood disorder.” Teach him that blood is made up of parts, and that he is “missing” a part. There’s no need to get too specific at first, for example by mentioning factor and proteins; just stick to general concepts and ideas. To help him visualize, use a concrete example, like the falling dominoes. Remember that a school-age child is increasingly able to understand more abstract terms, but he needs the help of concrete examples.

How He Understand Genetics

Learning about heredity is a great way to exercise the “missing step” concept in a step-by-step sequence. To a preschooler, hemophilia is just something he was born with. To a school-age child, something had to happen to cause hemophilia.

What is that something? His parents are usually the missing step. Your child possesses the thinking tool of time, so he may realize that hemophilia could have started in his family many years ago, even centuries ago.

But how exactly does hemophilia get from one person to another? Most school-age children name a causal agent—the thing or event that caused hemophilia to happen. This can be a parent, blood, a chromosome, sperm, or even “vibes,” as one boy phrased it.

Understanding often differs among younger children (ages 7–9) and older children (ages 10–11). When asked how they got hemophilia, younger children may simply reply, “Mom” or “Mom and Dad.” Some children name blood. “It streams through your family, through their blood. I got it when I was two or three. My uncle gave it to me.” This child is medically incorrect, but he’s trying to sort it out logically: a family member had hemophilia, I have hemophilia, and…maybe my uncle gave it to me?

School-age children may also understand or accept some basic heredity rules, such as “mothers are carriers.” This makes sense to them, because a “carrier” is a causal agent.

From ages 9 through 11, a child’s answers and thought processes become more sophisticated. The causal agent may be chromosomes, which only a few children can discuss at this stage. Remember that school-age children are still very concrete—more comfortable with things that they see, hear, feel, and smell. Chromosomes are abstract. Some children identify an “X thing” as the causal agent, but don’t understand the idea in purely scientific terms. To them, X and Y are not parts of the cells. They’re more like “germs” that other family members “catch.” One boy explained, “Mom’s a carrier. She has two little things inside her, little Xs. They’re like little eggs. She has a good X and a bad little X in her. My brother got the good carrier and I got the bad carrier.”

Ask your child, “Where did your hemophilia come from?” and let him figure it out on his own; don’t judge his answer at first or try to answer for him. You can work on the details later, supplying more accurate information once you’ve listened to his explanation and understood his thinking.

To read more on this topic download our August 2018 PEN today at

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“The journey is not easy…”

I’m writing from Arusha, Tanzania and tomorrow I start my hike up Mt. Kilimanjaro, the highest free-standing mountain in the world! This will be my third time. I summited in 2011 and 2016—no easy feat! Why, at age 61, do this again? To raise money for our mission—Save One Life. We’ve asked our community to help support our many programs in developing countries and donations are pouring in! Also, my fellow climbers are members of the community who want to experience a world vastly different from their own first-hand, at ground zero. To experience even for a day or two, the lives of the poor with bleeding disorders in a developing country. It is an experience they will never forget. So much so, that two of our climbers climbed with me in 2016 and have returned. And I thought I was the only crazy one!

I want so much to detail the trip right from the beginning, but there was been zero time to write or journal. A few hasty Facebook posts is all I could manage. After the climb, I will share so much more. But first, the most impactful—and unexpected—part of the trip.

Our in-country program partner, The Jose Memorial Haemophilia Society, established thirteen years ago by Maureen Miruka, mother of a child with hemophilia, took us to visit families in their homes. This idea is what distinguishes us from any other program in bleeding disorders and we not only insist on this, but we love it. But Saturday we did something different and new.

We drove to Gertrude’s Hospital, a stunningly beautiful, colorful and peaceful hospital in Nairobi. With my seven other companions, we attended a Women’s Group at 10 am, and a youth group simultaneously. The six guys took the children and young men into one room, while Wendie Chad and I, along with Maureen and assistant Sarah Mwangi, welcomed the women.

We were stunned as 28 women filtered into the room. And more kept coming over the next few hours. What was to be a 2-hour meeting stretched to over 4 hours as the women poured their hearts out. We sat in a big circle, and after a lovely prayer by Mrs. Mwangi (no relation), we went around the room. The women were a bit tentative to share. Usually all the attention is on the boys. One mother started by saying how her husband abandoned the family because he couldn’t deal with all the hospital stays. Now she has to work, cleaning houses and earning next to nothing.

Another mother optimistically said, “You have to have hope for tomorrow when you find that you are not the only one.” She lost four family members to untreated bleeds. While Kenya now has a steady though small supply of factor from the WFH and us, it is never enough.

One mother shared how her neighbors shunned her; another, how her own family turned on her. One mother was accused of witchcraft (yes, this is still a belief in rural parts of Africa).

More mothers and women kept coming in. A mother in a gray shirt shared how her first child died of a bleed. When her second son showed symptoms of hemophilia, her physician (at a major hospital!) told her son just needed more protein.

You almost didn’t need to know Swahili to know what they were saying: the pained expressions on their faces, the gestures to the elbows, knees, ankles as they spoke. One mother started to share and seconds later broke down in tears and sank back into her chair.

There was a rhythm to the conversation: the mothers started out quiet and shy as they shared. But each shared story empowered them to speak up. But the more they spoke up, the more emotional they became, and so started carrying, then reverted to being quiet. This would then encourage another mother to step up and share, and the rhythm started all over again. It was remarkable!

Maureen at last summarized the themes as the mothers shared: the need for social support; family planning; micro businesses (so the women do not have to be so dependent on men); stigmas of being different; becoming single moms as the husbands left.

The most powerful moment of the day was yet to come. Maureen presented sanitary kits provided by a nonprofit in Michigan called Days for Girls. Their motto: “Turning Periods into Pathways.” The kits were in pretty cloth bags and contained reusable menstrual pads. Some of the women present were not only mothers of children with hemophilia, but experienced heavy bleeding themselves. Physicians almost never diagnose mothers with hemophilia, but if their factor levels are below 50%, they could have mild hemophilia.

There is such a stigma around women and bleeding! We all know it, but we forget. I forget. I listened as woman after woman then shared their bleeding stories, how ashamed they feel, how isolated. It was so sad. They suffer a double blow of having a child with a serious medical issue, and then suffering themselves. Just to have them present and in a safe space where they could share, visibly empowered them! Maureen showed the contents of the kits and passed around many of them. The women checked them out and eventually all the kits found a home. The women were grateful and thrilled.

Maureen told us how women in Kenya in villages do not have access to pads often, and either use rags, or worse: they isolate themselves from their families, and stay in a corner of their thatched roof, mud hut or concrete home, and simply lie down and bleed into the sand for days. This is primitive and degrading.

What’s really amazing is my team, in cooperation with the Jose Memorial Haemophilia Society came up with this great idea and will work in partnership with Days for Girls to provide more kits and education. I am so proud of them!

The day ended with tears, smiles, laughter and of course tea! We hauled out suitcases filled with donated toys to distribute to the children. And before we disbanded for the day, the women all put a date on the calendar for the next support group meeting!

Let’s hope my climb tomorrow is as successful!

Aging Gracefully: How to Access Skilled Nursing Facilities

Marla Feinstein

Navigating insurance issues while you’re aging is a new field, particularly for our community. The good news is that bleeding disorder patients are aging—living longer—and can access more treatment options, including surgery. And they face the medical issues typically associated with aging, but sooner than people without a chronic condition. Complications from hemophilia can increase the likelihood of patients needing surgery for damaged joints or liver ailments. To help facilitate recovery while ensuring that their bleeding disorder and complications are adequately managed following surgery, a treating physician may recommend that some patients be placed in a skilled nursing facility (SNF) immediately after being discharged from the hospital.

            SNFs are ideal for patients because they provide short-term, intensive, inpatient rehabilitative services. And SNFs also have the medical and nursing expertise to provide a level of care far beyond what’s available to patients who are treated at home. These services are often critical for optimal recovery.

            Unfortunately, it has become increasingly difficult for some patients with bleeding disorders to get admitted into SNFs. The reasons for denial vary. Some SNFs have concerns about the type of specialized care that bleeding disorder patients require. Not surprisingly, the primary reason that SNFs deny access is the cost of and reimbursement for factor concentrates. This difficulty exists regardless of the type of insurance coverage (Medicaid, Medicare, or private) and doesn’t appear to be related to any other conditions patients may have, such as HIV or hepatitis C.

How to Pay for Skilled Nursing Facilities?

Understanding exactly how insurers reimburse for factor concentrates administered in SNFs is difficult. This is partly due to the limited number of patients needing the level of care provided at an SNF. It’s also partly due to lack of public information regarding how SNFs are reimbursed by private payers, while state-to-state variability makes it hard to understand Medicaid.

            In contrast, Medicare provides very specific guidelines for how SNFs will be reimbursed for factor for all beneficiaries. In general, Medicare pays for different types of care and services under Parts A, B, C, and D. The type of facility, and whether services are provided as inpatient or outpatient, defines how Medicare covers all patients.

            Generally, Medicare bundles reimbursement for all the services provided to a patient that are associated with an SNF stay, including nursing, therapy, drugs, supplies, equipment, room and board, and administration. This bundled, lump-sum payment is expected to cover all of the daily operating costs for running and staffing a post-acute care facility such as an SNF, but it doesn’t even come close to covering the high cost of factor concentrate (often exceeding $10,000 a day) for bleeding disorder patients during an SNF stay. Without receiving adequate reimbursement, the SNF will not be able to accept bleeding disorder patients.

Proposing a Partial Solution

It may be challenging for a patient to gain access to an SNF when there are limited or conflicting guidelines regarding how SNFs should bill for services. Though reimbursement for SNFs can be complex when working with any payer, for Medicare, at least, there is a legislative fix.

            The Medicare SNF statute allows certain costly, highly specialized services that SNFs do not typically provide to be billed separately under Medicare Part B.1 Services that can be billed separately include chemotherapy, radioisotopes, certain types of prosthetics, and erythropoietin for dialysis patients. National Hemophilia Foundation (NHF) seeks to add factor concentrate to the list of services that can be billed separately under Medicare Part B for patients with hemophilia and other related bleeding disorders during an SNF stay. The rationale is that providing factor concentrate to patients is comparable to the specialized services Medicare recognizes as needing separate treatment.

Advocating for Change

In 2014, over 300 bleeding disorder patients and families went to Capitol Hill in Washington, DC, to advocate and educate on behalf of Medicare beneficiaries unable to access SNFs. They came close to having bipartisan legislation introduced. Over the next year, NHF will continue to find legislators who are willing to introduce a bill that would change how factor concentrates are reimbursed for patients in SNFs, allowing people with bleeding disorders to access these facilities. We hope this will happen before NHF’s Washington Days in February 2016.

            It’s important to remember that passing legislation will take time, and will solve the issue of access only for Medicare patients who need to be placed in an SNF. Patients on Medicaid and private insurance (including employer groups, small and large group, and self-insured) may still have trouble accessing SNFs. We hope that once Medicare addresses the issue, Medicaid and private insurers will follow.

            Based largely on their experiences with Medicare, and fearing the astronomical costs of bleeding disorder patients, SNFs are reluctant to accept even patients who have other insurance. NHF has successfully placed patients with different types of insurance in a variety of facilities, when we can work with the facility and explain how to properly bill for factor. Though not ideal, educating facilities about the unique needs of the bleeding disorder community helps ensure that patients can get the care they need.

            Aging gracefully comes with its own set of challenges—especially for people with bleeding disorders. Coping with these challenges may be complicated, but the good news is that you’re not alone: there are resources to help. NHF’s public policy team has been hard at work trying to address how patients can best access the appropriate sites of care for the services they need. Although there isn’t always a clear path with simple answers, our goal is to facilitate and help ease transitions, allowing all patients to age gracefully.

Finding the appropriate skilled nursing facility takes time and resources, so be prepared. Educate yourself, payers, and the SNFs, keeping
these considerations in mind:
ACCESS
Post-acute care comes at a cost. When thinking about the type of care you need, determine who pays for what services, in what setting, and when.
1. Who pays: Types of insurance
Public
 Medicare
 Medicaid
 Dual
Private
 Individual plan
 Employer sponsored
Public–private combination

2. Type of care needed: Depends on the situation
Settings: Facility types and locations
Locations of acute care facilities include
 Hospitals
 Nursing homes
 Rehabilitation hospitals
 Hospice centers
 Long-term care hospitals (LTCH)
 Stand-alone facilities
 Determination of placement depends on
 Amount of rehab therapy patient gets
 Patient’s ability to perform activities of daily living
RESOURCES
Consider both financial and emotional resources. This process is hard on everyone: patients, families, and caregivers.
1. Financial
Short term
Long term
2. Emotional
Family, friends, caregivers
HTC social worker
Support groups
Assistance and support services
HTC providers (doctor, surgeon, physical therapist)
HTC case manager
Insurer
NHF’s public policy team

For additional information about Medicare coverage of SNFs: www.medicare.gov/coverage/skilled-nursing-facility-care.html

Marla Feinstein is a policy analyst for NHF. She is instrumental in advocating for the bleeding disorder community at the national and state level. Her current efforts focus on ensuring access to care for people with bleeding disorders. She has presented on behalf of NHF at numerous national- and community-based meetings of government and industry stakeholders.

  1. Centers for Medicare & Medicaid Services (CMS) Consolidated Billing Background: http://www.cms.gov/Medicare/Medicare-Fee-for-Service-Payment/SNFPPS/ConsolidatedBilling.html. CMS Overview on Skilled Nursing Facility (SNF) Consolidated Billing (CB): http://www.cms.gov/Medicare/Billing/SNFConsolidatedBilling/Index.html.

The Sacred Pint

The sacred pint alone can unbind the tongue. James Joyce

Following up on my blog of June 30, here’s more fascinating facts about blood. This time, what contribution war made to blood transfusion services. In Nine Pints: A Journey Through the Money, Medicine, and Mysteries of Blood , Rose George shares, in reference to World War II, how “London’s authorities had spent years readying for calamity on all fronts. But they had not thought it necessary to prepare any blood.” Below are excerpts from her excellent book!

  • In 1937, the English secretary of state for war had been asked what the nation proposed to do about a mass blood supply. He said, “It is more satisfactory to keep our stores of blood on the hoof.” He meant that the best way to store blood was how nature intended: inside a human body.
  • By World War II, blood transfusion had been fully accepted by the British military, which planned in prewar years to set up an efficient blood supply to its forces and operated it extremely effectively. Field Transfusion Unit trucks carried refrigerators containing 1,100 pints of fresh whole blood. [This had a very short life span!]
  • The actual emergency blood supply for London, a city of several million people, consisted of the stock kept by four London county hospitals for urgent maternity use: eight pints.
  • Yet in wartime Barcelona, Frederic Durán-Jordà, a Catalan physician, had successfully pioneered the mass collection, storage, and delivery of blood. He made blood mobile, transporting it to the front line in glass bottles in a converted fish van. Blood was withdrawn, mixed with citrate solution, then bottled. Barcelona’s blood was good for eighteen days.
  • We owe a lot to Percy Oliver: Oliver’s was the world’s first voluntary blood panel and the beginning of a shift to a model of altruistic blood donation in Britain that has endured one hundred years.
  • Dame Janet Maria Vaughan was a British physiologist, academic, and academic administrator. She researched in hematology and radiation pathology. In early April 1939, during World War II, she gathered some medical colleagues in her Bloomsbury flat; they would change modern medicine. She initiated creation of national blood banks in London, setting one up with Frederic Durán-Jordà. She used a modified milk bottle for blood collection and storage.
  • She used ice-cream vans full of her bottled blood through bombed and blacked-out streets. Most of the drivers were women.

• The war embedded the idea of blood donation in popular consciousness like nothing else had done.

• For British Major General W. H. Ogilvie, “the greatest surgical advance of this war, more important even than penicillin, is the development of the transfusion service.”

A departure from the topic of hemophilia, we are proud to promote…

This week we are taking a pause on the topic of bleeding disorders to share with you a very exciting project one of our team members has created!

Our editor of over 20 years, Sara Evangelos, has co-authored a young adult book titled Somewhere Besides Denver. We are so excited for Sara and this new book. Please read the synopsis below and check it out for yourself by visiting https://somewherebesidesdenver.com/

Denver, 1907: Three spirited teenage girls leave their homes on the prairie for a yearlong European Grand Tour. Violet and Marion, members of Denver’s social elite, yearn for more than society parties and safe marriages. Helen, a rancher’s daughter whose mother has abandoned the family, resents being an outsider. All three girls long to stretch the limits of what’s “suitable” for young women.

In Paris, the teens escape their chaperone and explore the city’s seamy side. Marion falls hopelessly in love with her drawing tutor, who has a history of breaking pupils’ hearts. Violet meets a chic clothing designer who encourages her to follow a career in fashion—and to ditch the corsets. In London, during the 1908 Olympics, Helen conducts a secret bicycle search for her long-lost mother, and the girls join the growing suffrage movement, barely escaping a melee at a women’s rights demonstration.

During their travels, the teens ride the Twentieth Century train and sail on the Lusitania. They meet a radical suffragette, two nosy gossips, a ground-breaking African artist, a fascinating photographer, and some fancy-dressed dogs in jeweled outfits. By the time they sail home to America, Marion, Violet, and Helen have found the confidence they need, at a time when women craved freedom—but men held the power. They decide to rebel against society’s rules, and to follow their own paths as women of the new century.

Visit https://somewherebesidesdenver.com/ for more information!