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Kilimanjaro: Undergoing Severe Exertion

Laurie Kelley August 19, 2019

“The mere animal pleasure of travelling in a wild unexplored country is very great. When one lands of a couple of thousand feet elevation, brisk exercise imparts elasticity to the muscles, fresh and healthy blood circulates through the brain, the mind works well, the eye is clear, the step is firm … the mind is made more self-reliant… No one can truly experience the charm of repose unless he has undergone severe exertion.” —Dr. David Livingstone

I don’t know about the mind working so well at high elevation, as mine seemed to work a bit against me just before the summit, of Kilimanjaro,  but I do know about the charm of repose, as I am writing this from the exotic island of Zanzibar, a place Livingstone knew well. This is where he ordered supplies and hired porters for his trips to the interior of the “Dark Continent,” so called because on maps it was largely unexplored. I thought about Livingstone’s biblical sufferings while I tried, for the third time, to summit Kilimanjaro, all to raise money for Save One Life.  I did summit twice before, in 2011 and in 2016. But this time seemed at once easier—been there, done that—and harder—that much older, and lacking the prep time needed.

Want to know what it was all like? Read on!

Monday August 5, 2019 DAY 1

Day 1 on the mountain is done! I’m lying in a dusty tent, snug in my 0° sleeping bag, everything organized and ready for tomorrow’s hike. My sleeping bag is an engineering marvel. It compresses down to a small package but traps heat so well that even in 0° weather you can sleep pretty much naked and not feel cold. I did the entire 4.5 hour climb today with no problem. I wasn’t wearing my pack this time and felt like I was cheating… but it was a good call. I had a two-month, off and on back spasm this spring, which finally resolved but not in enough time to really get strong for the climb. A knee injury May 6 forfeited all my running, which would have helped aerobically.

We had a long drive to Arusha, Tanzania, from Nairobi, Kenya. We were all up and ready by 7:30 am. The drive took about 8 hours by bus, which we thought might be easier than flying; I flew last time and some of our luggage didn’t make it in time for the climb. It’s just a bit nerve wracking! The bus was easier, and we saw the countryside, and made new friends! A group of Polish people hopped on too, and one of the guys, Michael, was quite the clown! Wiry with crazy blue eyes, he kept us laughing… and he was drinking something from his “water” bottle! In fact, we would see him and his team on the climb, and we were pretty sure he was drinking each night into the climb, which is insane!

Once we got through customs at the border of Kenya and Tanzania, we enjoyed the Tanzanian countryside. What a change from Kenya! There is a drought, and the landscape became dry, dusty, stripped. Dust devils swirled madly in anger on either side of our highway. My teammates were giddy with excitement; our trip was really starting.

We finally arrived at a place I know well—Kibo Palace hotel in Arusha. I really like Arusha—a small city at the foothills of Mount Meru and Kilimanjaro. We quickly checked in. Then the guides arrived: Jackson Tsui, a tall Tanzanian with a soft voice, and Edwin! I had Edwin as a guide three years ago! And Jacob Slaa, who climbed with me in 2011.  What are the odds?

Back at my hotel room, we had to pack for a 6-day climb; I finished my blog and saw that I hit my fundraising goal: $10,000! This helped me have a wonderful night’s sleep before the climb started.

Our team? Wendie and Ric Chadd from California. Wendie and I have known one another for 20 years. She and Ric have a son with hemophilia, and Wendie works for specialty pharmacy NuFactor, owned by FFF Enterprises, whose CEO and founder, Patrick Schmidt, is a longtime friend and supporter of Save One Life. Mike Adelman: senior vice president of Aptevo, which makes Xinity. He climbed and summited with me in 2016. His friend Jim Palmer, and son Sam (age 14). Jim is surgeon from Philadelphia—friendly and positive. He also summited with me in 2016—lots of suffering on the way down on that trip!  Myles Ganley, person with hemophilia B, age 25. Strong and fit! Shannon Peterkin, ex-Navy from Louisiana, big as a mountain himself. His red hair and prominent beard led the guides to nickname him “Simba,” which means lion.

We took a two-hour bus ride to the Machame Gate (5,718 ft), and waited for paperwork to be done, and for other groups to set off. Then through the gate and off we went! Through the rainforest we trekked, gaining altitude. The forest is thick and primeval, with trees and vines covered in green velvet. The air was thick and moist with growth and rot. We needed to go pole, pole (slow, slow), and Edwin set the pace. Jbiri was the young porter who carried my pack, which was light anyway. Mike and I were the first to stroll into camp, at Machame (9,927 ft). We signed in, then Edwin took us to our camp.

We didn’t eat till 8:30 pm but everyone was laughing and joking. The 30 porters carry everything we need for 6 days. Tonight we had fried tilapia, fries and spinach. Outside, the stars were shining bright. You could see the Milky Way streaking across the sky like a diaphanous scarf.

Tuesday August 5, 2019 DAY 2

It’s chilly! We were all awake at 5 am, from the rustling and chatting of the porters in the frosty air as they packed up camp.  We awake with hot tea in our sleeping bags, brought each morning by two of the porters, who carefully add sugar and milk, or whatever you like. A hot bowl of water follows, and since you cannot shower for 6 days, this little bowls becomes a very precious commodity! You quickly learn to appreciate the simple things. Breakfast was omelets, fruit, toast, and oatmeal. Jim and Sam look tired this morning, and are not feeling well.  So early in the trip, this does not bode well.

We started hiking after camp broke, and did the half day climb up, and up to Shira Cave Camp. Single file, taking huge steps, at least at a 45° angle, if not steeper. This was one of my favorite parts of the climb. It’s like climbing Mt. Washington for 5 straight hours. Rocks everywhere! Sometimes the ground was a single molten lava rock, lumpy but smooth. We saw our first senecios, funny-looking trees related to the daisies.

Our quads got quite the wake-up workout today! We arrived at Shira Cave Camp (12,355 ft) around 3 pm. Jim looked very wan. Sam was feeling better. I was with Jim in 2016, and he was strong right till summit night, so this was not right for him. Eventually Jim decided not to go forward; he and Sam packed up and with one guide, Prosper, and two porters, they left.

We would miss him; his smile and positive attitude really helps everyone in a group that eventually would suffer. But all went to our tents and I slept from 9:20 pm till 5 am again. I felt fantastic, totally enjoying everything. But now Shannon wasn’t feeling well.

Wednesday August 7, 2019 DAY 3

We awoke to another chilly morning. But we could see our goal, Kibo summit, in the background! We had oatmeal, eggs, pancakes, toast and jam for breakfast. We were off by 8 am, to Barranco camp, which would take us 8 hours. Within 30 minutes we were warm and began discarding jackets. I forgot the path went upwards so much, through scruffy little hills, and huge boulders, spewed out of the volcano probably a million years ago!

The view was spectacular, the sky blue. We were looking down at a solid cloud cover, like cotton balls forming a welcome mat. And to the west, Shira Mountain and Meru popped up through the cotton, and to the East, Kibo, summit of Kilimanjaro. Situated near the fault-line of two tectonic plates, Kilimanjaro began to build itself up around 750,000 years ago, via thousands of years of lava explosions from the volcanic cones of Shira, Mawenzi, and Kibo.

Shannon didn’t eat at all as the day went on, and we determined this was a bad combination of Diamox (altitude medicine) and malaria meds (which he didn’t need). Perhaps this is what Jim suffered from too?

I felt great, strong and focused. Lots and lots of hiking, and all good. We all seemed to need to pee every hour—a side effect of the Diamox. It got so ridiculous that we were all losing our modesty quickly.

We stopped at the 300-foot Lava Tower, all in good spirits but starting to feel the altitude at about 15,000 feet now. Lava Tower is a “volcanic plug”; at some point long ago, lava spewed out of a vent at the base of where Lava Tower now stands, cooled, and hardened, thus stopping up the vent beneath. 

We had another nice lunch, then packed up and headed down into the Barranco Valley. As I predicted, it was chilly, temps dropping as we lowered ourselves down the rocky hillside and into the barren valley. I also love this part of the hike! Maybe just because I know this so well. But here we saw the towering senecios and other strange looking plants, like something from a Dr. Seuss story, the Lorax, or from one of the movies where people go back in time to the dinosaur age. We seemed to shrink as the trees towered over us. Ric and Wendie loved it. We finally arrived at camp (Barranco, 13,066 ft), and saw the intimidating 800-foot Barranco wall, which we would climb in the morning. So, we climbed up to 15,000 ft then climbed down, to acclimatize. Dinner and bed early!

Thursday August 8, 2019 DAY 4

This was the day! This very night we would begin our summit push. But first, we had to get out of the Barranco valley. Again, we are awoken each morning in our dusty, cold tents, by two young porters who quietly and gently bring us tea, coffee or hot chocolate, even as they are bundled up and facing the cold. They gently and respectfully pour the hot water, dip in the tea bag, stir in the sugar, until it’s just right. Then they zip up the tent when they leave; I feel spoiled. I get to have hot tea with cream and sugar while still in my sleeping bag. Even though we have gone without showers for 4 days, and are covered in dust, we feel like royalty having hot drinks in a tent!

We are pumped at breakfast. Shannon is feeling better, now that he has stopped taking malaria pills. He makes an amazing recovery and starts eating again. Jackson wants to be one of the first out, so we start out around 7 am. Straight up the Barranco wall, until we are about an hour later doing a “scramble,” hand to foot. The guides are there to help us. We have to navigate “kissing rock,” so named because you have to hug it in order to slide around it. A bit hairy! We each look back every 20 minutes or so, and the camp we just left gets smaller and smaller. Mike cracks a joke about the strange yellow tents that are all connected, like gerbil tunnels. They haven’t started to break camp yet. I joke back that maybe they can’t find their way out?

I’m not using poles but just powering up with my quads, feeling excellent.

Everyone is doing great. Before long we reach the top, and the view is glorious! To our left, the east, with the sun starting to shine above the clouds (we are above the clouds!), and below us, colorful dots that are the tents that made up our camp. We pause for water, and photos. And always, a bathroom break.

Then we start the hike down, which takes the rest of the morning and into the afternoon. It’s a long slog, down from the wall, had to foot, carefully, down sidewinding rocky paths, and finally onto long stretches of dusty trails. We would hike about 7-8 hours this day, all the way to Barafu Camp (15,239 ft). Still, I felt good, solid. Shannon was recovered, everyone was doing well. We reached the camp, and our tents were already pitched. It’s very rocky here, chilly, but nice when the sun is out.

Soon we had our dinner, around 5, and straight to bed, after sorting everything out gear wise. I fell right asleep for 4 hours. In fact, I got the best sleep and felt great. So what happened that night to me?

We put on our gear at 11 pm, getting ready for a 12 am departure. Base layer of wool; fleece pants and top. Puffy coat. Rain pants over fleece, and my EMS tough jacket that goes everywhere with me. One iPod was dead, but the other seemed to have full juice. I was feeling so good I didn’t feel the need for it! Water, gloves, hat, and we were ready to go. Off into the chilled night air; I figured it got to about 20°, which isn’t bad at all, and later when the wind came, about 10-15°.

It was all good.

I felt strong with no digestive issues at all, this whole trip, and had a full stomach of pasta. From 12 am-5 am I felt great. The summit push is all short switchbacks, one foot plodding after the other. Things could not have been better. At 5 am we took a break, and Ric, sitting on a rock, looked crushed. He asked Mike for some motivation. I gave him some: You can do it! You’ve come this far! It’s only about an hour! He rallied and pushed on. Jacob had given me Red Bull around 3 am, freezing cold and tasting bitter, but I guzzled it, knowing from experience it can really help. I don’t recall ever feeling bad or sore. Just a bit tired, as the legs slowed.

Good morning Kili!

I looked up from time to time to see the stunning white stars in the black heavens. I thought: They are beautiful, but cold and unfeeling. They have no pity. Not like our guides: they were great. Warm, caring, always there to help. Team Kilimanjaro! My favorite moment was when Myles reached down to give me a hand up. Myles, the youngest, and with hemophilia, was crushing this mountain! He made it look easy. The stars stood back with a cold, clinical eye to all our suffering. It was harder to breathe as we went on.

Wisely, Jackson put Ric first. I recall when Jonas did that to me in 2011; I was flagging so bad, and thought, Oh no, I will slow down the pack! But just the opposite: I picked up steam! But come 6 am- 7 am, I was definitely slowing. The sun came up below us, lighting the clouds pink from underneath. My feet: it started as forward stumbles, like I had stepped on wobbly stones. I tricked myself into believing I had just tripped on some rocks.

Then side to side stumbles, like I was drunk. I kept apologizing to Jacob, as I thought I was not paying attention. My mind seemed sharp and my core was warm, and I was not ill; what was wrong? I had never overall felt better on Kili. But little by little, it felt like every little stabilizer muscle in my feet and ankles were giving away, like the snapping of suspensions on a bridge. I kept stopping, trying to get O2 to my feet and muscles. On KIli, at this point, oxygen was about 50% of sea level. Like trying to do spin class while breathing through a straw, someone told me.

Pretty soon, my legs were just collapsing, and once I even held onto a big rock, just to stay upright.  And Stella Point (18,848 ft) was a mere 65 feet away, but straight up, the steepest part of the entire climb. How could I possibly reach that? Our team pulled further and further away, and my feet grew more and more useless. Jacob was determined to get me up there.

This became a battle between my rational brain, my legs, my willpower. All screaming at me at 18,000 feet.

I think I knew too much. This was my third climb up Kilimanjaro. The first summit was in a blinding snowstorm with -5°. Jonas dragged me up. The second summit I did with relative ease. Listening to Metallica on my iPod, encouraging another climber, dancing with the porters, I did fine. But I bonked big time on the 3-hour descent, and my legs just dissolved into gelatin. I was thinking of that while hugging the rock. How will I ever get down? It will take me another 1.5 hours at least to summit and then I have 3 hours down… It seemed impossible. You can’t climb if your legs don’t move and I could not will them to move.

Of course, I could have done it. I did it the first time and second, under worse circumstances. Now, the weather was excellent, and I was fit. But I wondered if having a back spasm for two months off and on, and then an injured knee for two months helped ruin my workouts.

And psychologically, I thought, Been there done that. I’ve summited, I have nothing left to prove! But it still eats at me, even as I write this.

So Jacob and I headed down; within 30 minutes I was getting more O2 to my legs, and was able to walk well. That’s all it took! We got back to Baranfu at 10 am, and I knew my teammates were just starting their descent. I cleaned up, ate some breakfast, tried to sleep (no way), and just waited for everyone. They appeared around noon; Shannon was exhausted! Ric and Wendie went right to sleep.

I felt cruel but I had to wake everyone up at 2 pm, so we could head out. Shannon was so tired, and Jackson made the good call to not descend to Mweka Camp (10,204 ft), which would require a 5 hour hike! Could you imagine? 7 hours of hiking, followed by an 8-9 hour summit hike straight up, three hours down, then another 5 hours, all on about 4 hours of sleep? It was only 2 hours to high camp. And it was a lovely walk down; we finally got to groomed trails, the valley to our left, lush and green. So different than the dusty, barren plateaus we were on! The sun was up, it was warm again… the night seemed a distant thought.

They did it! Save One Life on the roof of Africa!

Why did I quit so close to the summit? Knowing too much, having summited before, and not enough aerobic practice? I don’t know. I wish I hadn’t quit, but I did. But I was so glad out team summited, and I was proud of them!

Saturday August 11, 3019 Mweka Gate (5,423 ft)

We were all in great spirits when we arose in the chilly air, which quickly gave away to spring like temps. Behind us, we could see Kilimanjaro startled awake with sunshine pouring into its glacier-eyes. We had a hearty breakfast while the porters broke down camp. Everyone wants to get home now! When the porters gathered around in a circle, this as the customary sign that they would perform some dancing and singing, and we would hand out tips. Edwin led the spirited songs, with a couple of the guys really getting into it!   One by one, Mike handed out tips to me, and I shook hands with each and passed their $40 on.  And we packed up and left! This was all downhill, and the way was muddy and slippery. I again slipped and fell into the mud, just like I did in 2016! Colobus monkeys chattered above, and the way was surrounded by lush trees, moss and fertile forests.

It took about three hours. So, we ended another trip by meeting up at the Mweka Gate, me by myself, finding Myles, Mike and Shannon together. Ric and Wendie were behind. We washed off our boots for $1, signed out of the park, and had a Coke! It was delicious! Not water from my now-stale Camelback. Even though I didn’t summit, I still shared in the celebration, and Jacob even gave me Stella Point on my certificate.

Finally Ric and Wendie showed up. Now we all had a cold beer (Coke for me), and we joked and compared notes. All in all, a great team, great comraderie. And maybe it was meant to be? I already started thinking about a return trip, and Jackson had me thinking of going up the seven-day Rongai instead.

And when I later checked Facebook, saying that I had quit so close to the summit, everyone chastised me kindly: I did not quit, I did great… 65+ comments and more coming. Best of all? We raised a lot of money for Save One Life’s programs and families in need. And when I jokingly said I need to come back to Kili and redeem myself—who wants to come? I was only joking.

But three people already want to sign up. Make it four—count me in. See you again, Kilimanjaro!

Team, Kilimanjaro is the outfitter I have used three times now, and they are superb! I highly recommend them and will use the, again. Thanks to our guides, Jackson, Edwin, Jacob and Prosper, our cook, and all the porters! And my wonderful teammates: Wendie and Ric, Myles, Shannon, Mike, Jim and Sam. And to everyone who donated to support Save One Life!

Teaching Your School-Age Child About Hemophilia

Laurie Kelley August 18, 2019

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

https://www.kelleycom.com/product-category/newsletters/pen/

“The journey is not easy…”

Laurie Kelley August 4, 2019

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

Laurie Kelley July 28, 2019

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.

Discover Takeda’s dedication to the bleeding disorders community

Laurie Kelley July 21, 2019

There have been so many changes in our industry lately! It’s good to review names and companies in the community. Read more to learn about one company that just joined our community.

Whether you’re someone living with a bleeding disorder or a devoted caregiver, here’s some news to note: Baxalta and Shire are now part of Takeda. And while the name has changed, the factor treatments, educational programs, and robust community support you count on haven’t gone anywhere. In fact, Takeda will build on these programs to support you more than ever.

What does this mean for you? Rest assured, it’s good news
Takeda is dedicated to maintaining their commitment to providing exceptional patient support and partnering with patient advocacy organizations on the causes that are important to you. This move builds upon a legacy of leadership in hematology and a passion for helping patients embrace life’s possibilities.

Growing network of support
Takeda is committed to supporting the entire bleeding disorders community, as well as patients’ unique needs beyond medication.1,2 This includes education, support information, and plenty of inspiration from the walks, talks, and other programs you know and enjoy. To educate the community, Takeda has programs specifically designed for patients and their family members, like HELLO TALK® sessions. Takeda also works with local healthcare organizations to deliver disease state education to healthcare professionals who are new to the bleeding disorders specialty or don’t encounter these disorders in their everyday practice. You can also find helpful financial assistance information and dedicated support at the Hematology Support Center.  

On bleedingdisorders.com you’ll still find helpful information, insightful tips, and details on educational and support resources like FACTOR FRIEND™ and HELLO TOOLS® kits. You can also check out community news, events, and more to help stay connected with the community from coast to coast.

Takeda continues to support the community through these powerful resources and is dedicated to inspiring and empowering patients, caregivers, and the healthcare professionals who care for you. All to help you discover your own possibilities—and make today brilliant.

Stay connected with the community
Find educational programs and events near you and see what’s going on across the country. And this fall, you’ll be able to discover even more on the new and improved bleedingdisorders.com.

You can also join the community via these social channels: 

Takeda, with its focus on factor treatments and passionate support of the bleeding disorders community, is here to support you throughout your journey of living life with a bleeding disorder.

Meet Takeda at an event near you, or in Anaheim this fall!
With walks, talks, and other community events happening coast to coast all summer long, you’ll probably have a chance to get to know more about Takeda. Find an event near you. And, of course, there’s a great opportunity to learn more about Takeda later this year. Be sure to check out the Takeda booth and activities at the National Hemophilia Foundation’s (NHF) 71st Bleeding Disorders Conference. This year’s conference is happening October 3-5, 2019, in beautiful Anaheim, California. Takeda looks forward to spending the weekend with the bleeding disorders community, attending educational sessions, special events, and opportunities to meet and be inspired by all of you!

References: 1. Shire’s 70+ year commitment to the hemophilia community [news release]. Lexington, MA: Shire Plc; January 15, 2018. https://www.shire.com/newsroom/ 2018/january/7sossj. Accessed May 30, 2019. 2. Takeda. Patient services: hematology support center. https://www.shire.com/patients/-patient-services/-hematology-support. Accessed May 30, 2019.

Copyright ©2019 Takeda Pharmaceutical Company Limited, Lexington, MA 02421. 1-800-828-2088. All rights reserved. TAKEDA and the TAKEDA logo are trademarks or registered trademarks of Takeda. HELLO TALK, HELLO TOOLS, and FACTOR FRIEND are trademarks or registered trademarks of Baxalta Incorporated, a Takeda company.

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This is a paid public announcement from Takeda and does not constitute an endorsement of products or services. When you click on the links in this blog entry, you will be directed to the Takeda website. LA Kelley Communications always advises you to be a savvy consumer when contacting any company; do not reveal identifying information against your will.

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