Dosage Denied! Where Does Insurance’s Power End?

Samantha* lives in Montana, our fourth-largest state but with one of the lowest populations, at 1.05 million. This means that families with hemophilia have an extra burden of traveling long distances to a hemophilia treatment center (HTC). Samantha’s three sons with severe hemophilia, ages 18, 13, and 11, were used to the 11-hour drive to Denver’s renowned HTC and a 7-hour drive to the closest hemophilia hematologist.

            What they were not used to was a sudden denial by their insurance company of their hematologist-approved factor dosage.

            On January 1, 2016, Samantha switched to a new insurance company, Assurance*, which was registered with the state exchange, or Marketplace. Six months later, Assurance made a curious request. The company asked Samantha to provide the weights of each of her three sons. This seemed odd, because Samantha always provided weights when she ordered factor, but she complied. Then her hematologist and specialty pharmacy received the same request from Assurance. The hematologist sent the weights, along with a three-month prescription. But Samantha was baffled.

            The reason for the company’s request soon became clear. On July 11, 2016, Assurance sent a letter to Samantha’s specialty pharmacy and hematologist explaining that the boys were using factor outside the recommendations of the product insert (PI). The PI is the set of instructions and medical information provided by the manufacturer inside each package of factor. The insurance company claimed that by using more factor per dose than was recommended, the family was acting outside of FDA regulations.

            Shortly after, Assurance sent Samantha a letter declaring it would only authorize the average dose according to the PI, contradicting the prescription of the boys’ hematologist, and cutting the hematologist-ordered doses by 65%.

            This letter shocked Samantha. “I reached out to Assurance via email to ask what was going on,” she recalls. “The company replied, said the hematologist had been notified, and I needed to contact the hematologist and have her reissue a script at a lower dosage. The insurance company kept me out of loop as much as possible.”

            But Samantha was smart: she made notes on every phone call and documented everything.

            Then Assurance sent a one-page letter about the dosage change to the hematologist and specialty pharmacy. Although Samantha requested a copy, she didn’t receive one; her specialty pharmacy finally forwarded her a copy.

            The letter stated that Assurance had an external review board investigate the case, but deceptively, the insurance company requested only a review of the PI’s average dosing, neglecting to send the bleed history of each boy and the recommendations of the hematologist! The letter did not verify who this review board was, or what outside consulting company was used and whether it had included hematologists knowledgeable about hemophilia.

            Samantha knew a fight was coming. Luckily, she was prepared. Her hematologist had recommended using an amount higher than the dose shown on the PI. Each boy’s dose was well documented. “We have 150 pages of documentation showing why each of our sons is on doses higher than the PI,” says Samantha. “Their half-lives, their recovery studies were all done consistently. So the scientific and medical facts were there.”

            The changes recommended by Assurance were shocking: Samantha’s youngest son had been prescribed 130 IU/kg of recombinant factor IX, three times a week. Assurance changed his dose to 80 IU/kg twice a week, a decrease of 67% per month. Another son was prescribed 150 IU/kg, three times a week. Assurance decreased this by 64.5%, down to 80 IU/kg, twice a week.

            Samantha notes, “My boys are very athletic and extremely toned; there’s no obesity. They are big boys. My youngest now weighs 184 lbs and is almost six feet tall. They needed the dosage prescribed by their hematologist.”

            Meanwhile, Samantha’s world became more stressful. “Raising three boys, fighting this battle, it was overwhelming!” Within one week of the lower-dosage change, all three boys had bleeds, flu-like symptoms, aching joints, and headaches. “My oldest son told me everything aches inside him. My middle son took a shower late one night. Afterward, it looked like a blood bath. He had horrific bloody noses. He was ghostly white. Finally we started taking [our sons] to the ER, even for nosebleeds, which we normally treat at home. We weren’t going to the ER for products (the ER doesn’t stock them), but for documentation—proof of their bleeds for the insurance company!” The ER doctor told Samantha that her sons needed factor now. “We told the doctor we couldn’t get the medicine in the correct dosage. Then he wanted to get involved in the fight!”

            Samantha’s youngest son had his first-ever joint bleed in his knee, which bled for a month. He was on crutches for six weeks and needed physical rehabilitation. “We started keeping the boys inside, like in a bubble, so they wouldn’t risk getting hurt. Yet, the boys had spontaneous bleeds.”

            Assurance tried many tactics. The company didn’t return Samantha’s phone calls. It denied and even delayed preauthorization from the hematologist, denied bleed doses, and once, incredibly, even refused to send factor.

            Despite the barrage of phone calls to Assurance from the specialty pharmacy, hematologist, and Samantha, the request for the prescribed dosage was denied. Together, Samantha and her healthcare team filed a grievance with the state against Assurance, following the online procedure. “Assurance became belligerent, to be honest,” Samantha remembers. “It was horrible. We said this change in dosage was life-threatening, and they said it wasn’t their problem. Our hematologist had never heard of any insurance company changing a physician’s script. She would have screaming phone calls with them. But they just would not budge. It was all about the money. They said, if we weren’t happy, we could go elsewhere. They wanted to get rid of us.”

            After filing the grievance, Samantha contacted her state insurance commissioner’s office. She filed an online appeal. It was tricky, because applications are limited to a certain number of characters. But Samantha was clever: she filed an appeal for each child separately, giving her more space to describe what was happening. Samantha also contacted Michelle Rice, vice president, public policy and stakeholder relations of National Hemophilia Foundation, for advice about including key words and points.

            A second external review was requested by the commissioner. When Samantha received the results of this review, she couldn’t believe it. “It was nuts! It agreed with the dosage change by Assurance, and this time we knew who the company was that conducted the review. What info did they base this on? What info was given to the external review company? What do they know about my boys? I started crying. My kids could die.”

            Samantha phoned the commissioner’s office, but the commissioner wasn’t there. In desperation, she called Donnie Ackers of Hemophilia Federation of America (HFA), who coached her on using the right words: “Call the commissioner’s office right away and get a manager. Don’t lose this!” With Donnie’s urging, Samantha called back: “I got ahold of Brenda*…she was literally a godsend. She said this was not acceptable. She took over our case. If not for her, we would still be fighting this. She said what they are doing is feeding you half-truth and lies.” Brenda asked for only one lawyer from Assurance to be her contact, and spent hours on the phone with the boys’ hematologist.

            By now it was August 2016, and Samantha and her boys had gone a month and a half with limited factor. “Brenda emailed me, and said she was going to force Assurance to send the prescribed amount of factor. She challenged them on the external review board’s finding. She called their bluff: Assurance wrote a letter saying it was not their fault; it was the external review board’s fault. Assurance had the audacity to claim the review board put their own numbers in the review, which coincidently matched the lower preauthorization!”

            To keep medical records up to date, Samantha recalls, “We eventually had a new pharmacokinetic [PK] test on all three boys, a 7-hour drive for us to our hematologist. At that time, my youngest had a knee bleed, and had to endure having all these labs drawn. I’ll never forget the drive to the hematologist; they all hurt so much that they slept a long way to overcome the pain.”

            The stress took its toll. Samantha says, “It was a tough time for all five of us. On top of this, we are working full-time jobs; our oldest had to quit his summer job for a while. We were so busy making phone calls, taking notes, caring for bleeds, and worrying about the long-term joint damage on the boys that we never stopped to breathe until Christmas!”

            The state insurance commissioner’s office made Assurance conduct a third review, with the hematologist’s prescription this time. In her incredible efforts to prepare, Brenda compiled records from birth to present for each child, including all scientific evidence (lab results, PK testing), a list of 20 items that an external review board needed, the PI, the original script, the changed script, and documented bleeds.

            “This third external review came not only in our favor, but even more in our favor,” says Samantha. “The board said these boys are not getting enough factor, and they changed the dosage to every 48 hours! And Assurance can never, ever change this, because it’s from the insurance commissioner’s office and follows the procedures outlined in the Americans with Disabilities Act.

            Samantha never dreamed that a manufacturer’s PI would be used as a tool in an insurance company’s attempt to lower costs by lowering dosage. When an insurance company comes between a hematologist’s prescription and a patient’s need, this is playing with life and death. Samantha’s story shows the value of documenting everything—every call, every email, every letter. She was smart to work with her healthcare team, and to never quit. When all seemed lost, Samantha called HFA, and from there, the commissioner’s office…one more time. And that was the straw that broke the back of Assurance’s ludicrous claim.

            Assurance hid behind the PI to start the battle. But the hemophilia community takes any challenge to children’s health head-on. To win.

 *Names have been changed due to pending legal action.

From: Publication: PEN’s Insurance Pulse 09.18

Origins: Save One Life

The air was crisp with the coming of Fall when we visited New York City this past Thursday night to attend NHF’s Annual Soirée, a fundraiser that honors various members and organizations in the bleeding disorder community. I have attended once before, a few years ago. It’s a lovely night and chance to get caught up with colleagues and friends, while being dressed to the nines. This night, the nonprofit organization I founded, Save One Life, was to be honored. We were receiving the “Global Impact Award.”

Chris Bombardier giving acceptance speech

Along with Save One Life, Alex Borstein, television actress and community member, David Quinn, head coach for the NY Rangers and the World Federation of Hemophilia were also being honored for the Inspiration Award, Ambassador Award, and Global Leadership Award, respectively. Congratulations to all who were honored!

Chris Bombardier, Save One Life’s executive director (and famous mountaineer with hemophilia) and I took the stage to accept the award, while several of our board members looked on. With us were: board member Ujjwal Bhattarai, chair, who helped us found Save One Life, and his wife Sunita, who have a child with hemophilia; new board member Natalie Lynch, and husband Patrick (actor and film director, president of Believe Ltd., who has hemophilia), and board member Kayla Klein, mother of a child with hemophilia who works at Sigilon.

Val Bias, CEO NHF, Chris Bombardier and Laurie Kelley of Save One Life,
Dawn Rotellini, COO NHF

While looking at them from the stage and into the bright lights of the future, I recalled our very humble roots. I spoke to the audience about how Ujjwal and I have worked for 18 years to make Save One Life truly have impact among the world’s poor. It has been a long, difficult and challenging road, but with the greatest of rewards: to help those without access to factor have access; to help those who live on the edge have security; to let those with an uncertain future know they have an organization to count on. After 18 years we have now seen so many of our children in school, graduating, have jobs and even have families of their own.

We had to give credit to Chris, and his daring Seven Summits Quest, which helped raise awareness of Save One Life to the global community. And more than that, the documentary “Bombardier Blood,” directed by Patrick Lynch of Believe Ltd and now produced by Alex Borstein, has catapulted us into the spotlight. We never sought recognition or fame for the work we consider a personal and compelling mission—for me, based on my faith—but the movie has done more for us than just about anything we have done ourselves. We could not thank Chris or Patrick enough for their efforts. Their sacrifices and dedication have been huge. And kudos and gratitude to Octapharma, which funded the last two mega-climbs, and for funding the entire movie.

But absent that evening was a key person, perhaps without whom known of this would have come to pass.

Laurie Kelley with Lisa O’Connor, who created the idea
of Save One Life in 1999

Twenty years ago, a mom from Cold Springs Harbor, New York, not far from where the event took place, sent me a letter. She has a son with hemophilia, only a few years younger than mine, and read my books and newsletter. In 1999, we used to write letters to one another! Hers came on one sheet of yellow lined paper, and on it, she wondered if there was a way to help children with bleeding disorders in developing countries, like Save the Children. I happened to have sponsored two children with Save the Children, one in Lebanon and one in Mali. Not long after she sent her letter, I made my first trip to Pakistan, a country I have grown to love. There, on the Arabian Sea, in a humble, two room dwelling in a very poor area, I sat on a bed with a baby in my lap, listening to a father with a fretful expression speak about his two young sons with hemophilia. He was very poor, only earning about $20 US a month. He wished for an extra $20 a month, to send his oldest boy, Mohammad Ali, to school. With this education, his son could get a good job, once he learned English. I thought this would be an easy fix. And if we could do this for this Pakistani child, why not do it for others? Americans are among the most generous people on earth, and I knew if we appealed to them to help children with hemophilia who were poor and without factor, we could help change lives.

It was Lisa’s letter that kept drawing me back. Could we create a program like Save the Children?  The answer was yes. Yes. Anything is possible!

Now, 18 years later, here we are. Over 2,000 children sponsored. Over $3 million in direct aid. Over 270 college scholarships. Over 80 microenterprise grants. Over 30 camp grants. 13 developing countries. And more to come… .

(See www.saveonelife.net for a short video of Save One Life’s accomplishments so far)

Save One Life board members Ujjwal Bhattarai and Natalie Lynch, with spouses Sunita and Patrick

As it happened, I was going to Huntington, New York after the event to catch a Doors tribute band show at the Paramount Theater. Something rang a bell… I checked my database and saw that Lisa lived right near Huntington. A few texts later and we agreed to meet!

This morning Lisa walked into the Sweet Hollow Diner, and we sat together for breakfast, while I shared all the profound and life-changing programs and stories that have happened over the past 18 years.  She was amazed; with her son grown and gone, she had kind of lost touch with the bleeding disorder community.

I believe in honoring those who make a difference. Save One Life was not my idea; it was Lisa’s. Lisa cast a small stone into a pond, and the ripple effect continues after 18 years, and hopefully will continue for decades to come. Her idea was a catalyst, and so many have benefited from it. Let’s honor Lisa, as well as those Thursday night. It was her vision that gave birth to Save One Life.

Visit https://lakelley.smugmug.com/Events/Galas/NHF-2019-Soiree-Honoring-Save-One-Life/ to see photos of the event!

We need to give ourselves permission to act out our dreams and visions, not look for more sensations, more phenomena, but live our strongest dreams— even if it takes a lifetime. Vijali Hamilton

Kenya: Brian’s Story

Friday August 2, 2019

“…Africa is a place where the people do not need limp gifts of fish but sturdy fishing rods and fair access to the pond.”  Chimamanda Ngozi Adichie

You can never know the needs of a person until you visit them in their homes. And we seek to know the needs of those in Kenya with bleeding disorders. So off we went today, to visit several families in their homes. This meant hitting the road around 8 am. With us, the Kilimanjaro climbers and Save One Life executive director Chris Bombardier, were Maureen Miruka, president of the Jose Memorial Haemophilia Society, Kehio Chege, father of a child with hemophilia and cofounder, Sarah Mwangi, dedicated JMHS employee and program manager, and Isaac Maina (Waithaka Maina), a young man with hemophilia who volunteers. We had two vans, and piled into them for our two hour journey to Murang’a.

The way to Brian’s house

We first made stops at the Murang’a District Hospital, and visited three families we know well–I’ll blog about them next time!

But the most exciting part of the day was meeting a new beneficiary and last child of the day to visit: Brian Mungi. Daylight was fading as we bounced and jostled down the dirt roads, lined with towering banana trees. I was excited to meet Brian, who just got sponsored by Dr. Len Valentino, formerly of Rush Hospital in Chicago and now with Spark, who I’ve known for years. We finally pulled up to a section of forest, and filtered out. Then a short walk down a well-trodden dirt path, so overgrown it felt like passing through a huge green tube.

Brian Mungi

The extended family was there to greet us: mother and father (James), grandmother, aunts and Brian and his cousins. Our entourage was pretty big too. The climbers: Myles Ganley, Shannon Peterkin, Mike Adelman, Jim Palmer and son Sam, and Wendie and Ric Chadd. Save One Life Executive Director Chris Bombardier. JMHS members Kehio, Isaac, Maureen and Sarah. And two amazing nurses from Murang’a District hospital: Judy Mwaura and Jane Mugacha.

The house, nestled into the forest, was made of steel sheets. The roof was corrugated steel sheets so the rain can run off it. (The noise made by rain falling on steel is deafening) The house was rusty, giving it a burnt red color. And the entire family lived there, despite a dirt floor and no screens on the windows to protect from mosquitoes. And no glass either. They have electricity, evidenced by the naked bulb dangling from a wire above the doorway to the home. But they had no refrigerator. Imagine living miles and miles from any store, not having a car or any transportation and lacking a fridge!

This is almost as poor as it gets.

And yet they were happy. And they were thrilled to see us. We saw right away the fire outside, and pots of food. Mutilcolor plastic chairs were brought out with decorum from a wooden shed. Nearby, a lowly cow, standing in muck, watched and mooed pathetically for attention. But the family was busy attending to us. The women stirred pots of delicious smelling food: they had prepared a feast for us! We suddenly realized we were hungry. Brian, age nine, watched quietly but with a shy smile. Brian had only been diagnosed two years ago, after visiting the Kenyatta hospital in Nairobi, two hours away.

Brian with his father, James, a schoolteacher

The father, James, shared with us about how he grew up in this house as a boy, and now lives here with his family. He is a teacher, and spoke English precisely and eloquently. How they all manage to live together is remarkable. They did not seem scared of hemophilia; I think knowing how well the Jose Memorial Haemophilia Foundation cares for them makes them feel secure. And with his sponsorship, and access in the future to scholarships and factor, Brian can lead a healthy life. In fact, Brian may be the future for this family. He now has a lifeline and a path out of poverty. I started brainstorming the many ways we could help them: transportation, a new cow pen for the poor creature, a fridge, clothing.

Save One Life founder Laurie Kelley with Brian

Dinner was ready. Despite our being hemmed in by a forest of banana trees, and scuffing up the rich red soil of Kenya, the women were adamant that we all wash our hands. A pitcher of warm water and soap did the trick. We each took a plate while the women served us a delicious meat stew, rice, and mukimo—my favorite. The food was freshly killed, plucked, picked and cooked, giving it a rich flavor. The women stood aside while we, the guests, and the men ate.

I’ve been to multimillion dollar galas and hung out with celebrities, but none compared to the hospitality and class of this family. Class truly does come from within.

As darkness fell, it was time to leave. We had a long ride back. With many handshakes, hugs and promises, we walked away from the little steel shed they call home, and back up the hill to the vehicles. Like the other families, I will see them again on my next trip. And hopefully bring some items to ease their burden. They already gave me their gifts: hospitality, graciousness, and the opportunity to serve.

To sponsor a child or learn more about Save One Life, go to www.saveonelife.net

A feast for the guests!

Recognizing “this great continent’s young people”

You may have heard that in March 2019, the $1 million prestigious Global Teacher Prize was given for the first time to a teacher from a low-income country–Kenya. Peter Tabachi teaches science and mathematics at a secondary school in a remote village in Kenya, and traveled to Dubai to be given his astounding prize by actor Hugh Jackman.

Street scene, Nairobi, near college

“This prize does not recognize me but recognizes this great continent’s young people. I am only here because of what my students have achieved. This prize gives them a chance. It tells the world that we can do anything.” —Peter Tabichi 

The majority of his school’s students are from poor families and almost a third are orphans. The school has one computer and there are 58 students per teacher. But Tabachi has achieved extraordinary things with his students, showing that it doesn’t take much to change lives.

And we at Save One Life believe that, too. During our recent visit to Kenya, we assessed our beneficiaries and we were most impressed with Javan Odwar, a young man now attending college, thanks to a scholarship from Save One Life.

I’ve known Javan since he was 9 years old; I’ve been to his home twice. It is a one room dwelling, for originally four children and parents. Javan is the youngest; since I last saw him, three years ago, his older brother James passed away. Javan and his sister Moline have von Willebrand disease. But nothing seems to stop them from achieving goals. And education is the ticket out of poverty.

With a new team of supporters, including Save One Life executive director Chris Bombardier, we traveled not to Javan’s home this time, but to his college, to see how he was doing. With us was Maureen Miruka, founder and president of the Jose Memorial Haemophilia Society, our program partner, and JMHS program coordinator Sarah Mumbi. Through the bustling streets of Nairobi we went on August 1, down some side streets, and finally at the college.

Now, when you think of college, you might think of ivy-covered New England brick buildings, or glass and brass city buildings, or maybe concrete block community colleges on the outskirts of towns. But not here. The Kasarani Catering College is a storefront on a dirt road. As you step inside, you enter a concrete-walled room, with chipped-paint décor, a banner, and a plastic table and chairs for ten. The stove was a hub of activity—clearly we were going to be fed lunch at 10 am! The students were busy preparing a feast.

Our excellent cooks!

Maureen filled us in: this was an example of the Kenyan government trying to expand education to those of lower economic means, by supporting middle-colleges. Rather than attempt four years, this trade “college” (essentially a one to two room storefront converted into an education center) would train young people to serve in the growing tourist sector as cooks and waiters. Or perhaps work as caters for weddings and other special events.

Javan couldn’t have been more proud. Impeccably dressed in black and white, he ushered us to our seats, and also entertained us by grabbing his acoustic guitar and singing for us songs he wrote! He has a lovely voice and is talented. One song was about having a bleeding disorder. Besides what will become his day job as a caterer, he hopes to make it as a recording artist as well.

The effort made by everyone was great. The young team of cooks prepared a feast of meat, rice and vegetables. I didn’t think I was hungry until I smelled and saw the food, and then I ate everything! While I ate, I noted the simplicity: on the wall were nails, on which the utensils would be hung; they were marked by simple, hand-written labels fastened with tape.

We are very proud of Javan. For me, knowing where he comes from, and seeing his ambition, and now having a scholarship from Save One Life and a college funded in part by the government, gives me security that this young man will make it. He will rise above poverty, as the next generation should, and become self-sufficient. He has big dreams. Our mission is to help him reach those.

Thanks to Patrick M. Schmidt of FFF Enterprises for his sponsorship of Javan through the years.

Kilimanjaro: Undergoing Severe Exertion

“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!