Learning from (Near) Catastrophe

Americans learn from catastrophe,
and not from experience. Teddy Roosevelt

That’s a great quote by one of my favorite presidents; I feel like we have been having a bit of a healthcare catastrophe now in Washington DC. And it’s a great learning experience. Unfortunately, it comes with a steep price.
 
Back in 2010 we began warning the hemophilia community about coming changes in healthcare reimbursement through our event Pulse on the Road, and our newsletter Pulse. Insurers were balking at the high cost of treatment and care,
especially for those with chronic disorders like hemophilia. While for years insurers carefully sidestepped irritating and challenging the hemophilia community about prices of drugs—perhaps because of our tragic history with contaminated blood products—they began slowly applying the screws to what they would and would not cover . It shocked us then—how dare they? But nothing seems to shock us now, from the antics of the current administration to the all out assault on the
gains for those with chronic disorders through Obamacare.
 
Through Obamacare (formally, The Affordable Care Act [ACA]), our community finally enjoyed no lifetime limits, no annual limits, no discrimination through pre-existing conditions, and children would stay on their parents plan, married
or not, till age 26. Medicaid coverage was expanded in many states to include more people in need. We also warned that this came at a price, and this is where the conflict lies. Who will pay for all this? It’s like giving a teen a credit card with no limit. The spending has to stop somewhere and costs must be contained.
 
The Trump Administration introduced it own bill, to repeal Obamacare. The Better Care Reconciliation Act sought to unravel some of the gains, including rolling back the individual mandate (that each American must have insurance, with notable exceptions), shrinking the Medicaid expansion, offering massive tax cuts, and reducing federal funding. The Congressional Budget Office, which is bipartisan (meaning it doesn’t favor one party or another) calculated that 24
million Americans would be uninsured by 2026 if this bill passed. Premiums would drop to 20% lower but deductibles (out of your pocket) would increase. Insurers would no longer have to cover Essential Health Benefits. Why do some Republicans want it? It cuts $600 billion in taxes that help pay for Obamacare, which covered extended coverage costs through taxes on couples earning more than $250,000.
 
Senate Majority leader Mitch McConnell postponed this bill after the scathing assessment by the CBO. In one poll only 17% of voters approved it! And senators listened to their voters. In a nailbiting session, the Senate voted early Friday morning to block the “Skinny Repeal.” John McCain (R-AZ) stole the show by casting his vote “No,” which led to an audible gasp.
My friend Deena from Arizona, whose son has hemophilia and inhibitors, wrote on Facebook, “I heart John McCain! Thank
you Senator for doing what so many didn’t and thinking of your constituents! Once a hero… Always a hero! I’m so proud to be an Arizonan! Pre-existing conditions just got a post-existing boost!”
 
John McCain flew all the way to Washington DC to vote a mere two weeks after brain surgery for cancer. Stunning
dedication. Our community was thrilled overall, and so many rose to call, fax and tweet their senators not to vote for this bill. I saw NHF, HFA, and all the chapters rallying around one battle call, “Vote no!”
And it came to pass. We have a reprieve.
But it’s far from over. The House Republicans are angry with the Senate Republicans. The Trump administration seems at war with itself, firing appointees left and right. I hope Teddy Roosevelt was right that we learn from catastrophe, or near-catastrophe. We need to learn fast because there will be more skirmishes and battles, as we continue to fight to protect healthcare coverage for our loved ones with bleeding disorders.
 
Congress is on vacation now, and I am leaving today for Utah, to escape to the wilderness for a few days to visit my
daughter, who proudly works for the US Forestry Service, and away from news about the reality-TV drama that is Washington DC these days. Score one for us… for now.
 
Read more about what this means for bleeding disorders here: http://www.patientservicesinc.org/News/ArticleID/1149http://www.hemophiliafed.org/
https://www.hemophilia.org/

Ups and Downs of Theme Parks Rides

Summer is in full force and with it, trips to theme and amusement parks. I’m a huge lover of them, including the thrill rides, like roller coasters. In 2000-2002 there were many stories and studies in the news about the potential for brain bleeds, and these were about people without bleeding disorders. Last year came the first reported case of symptomatic bilateral subdural hematoma associated with riding a centrifugal motion simulator ride. 

What does this mean for our kids (and big kids–adults!) who love to ride roller coasters and simulator rides? Have you asked your hematologist for his or her opinion? I decided to rerun one of my favorite articles from PEN 2002 about risks for kids with hemophilia at theme parks, written by Dr. Richard Lipton.

Summer is here, and millions of families will seek adventure and thrills at theme parks like Six Flags, Disney World or Universal Studios. What a wonderful day a family can have at a theme park! Kids and parents love the rides, water slides, entertainment and general excitement. Are there any special safety concerns or precautions for families with a child with hemophilia? Yes!

Think of a theme park as a very big playground, but with an atmosphere favoring less parental control—a setting that can lead to impulsive behavior by children. Imagine yourself at a typical theme park. You’ll have general health concerns. Parks can be crowded, hot and sunny—so apply sunblock and drink plenty of water. Theme parks have paved surfaces, harder than public playgrounds, and filled with children running. Your child needs to wear appropriate footwear. Flip-flops or Texas might be suitable for water activities, but sneakers are safer for walking and running.

You’ll also have concerns specific to the theme park you visit. “Mind Eraser,” “Shockwave,” and “Nitro”—what about these special high-end rollercoaster rides? Riders are frequently subjected to changing speeds that result in “G-forces” similar to those experienced by trained, appropriately suited and restrained combat fighter pilots. Your child becomes “Top Gun” in shorts and a T-shirt! Parents should remember that any person can experience head trauma on these specialized rides.

How is the head affected by a ride like the Mind Eraser? Recall that your brain is surrounded by fluid; it is floating inside your skull. This arrangement cushions the brain, and reduces movement, protecting your brain from direct trauma and sudden shifts in skull position. It works quite well in our daily activities, and in automobiles (as long as we’re wearing a seatbeat). Now imagine speeding over the crest in a roller coaster. All of a sudden you’re weight- less, like an astronaut—this is called a Negative G- force. (You’ll have no trouble recognizing this moment, because every- body screams!) Then, after the coaster speeds down and resumes its climb, you feel your backside being pushed into the seat. It feels like the force of gravity has suddenly increased. This is a Positive G- force. Although your body is restrained, high G-forces could exceed the protective cushioning of fluid surrounding the brain, and could cause injury.

Interestingly, this year New Jersey became the first state to seek legal restrictions on the maximum allowable G-forces on amusement park rides. The regulations result from concerns raised by physicians about the association between neurologic damage and high G-forces on these rides. Certainly, such injuries occur very infrequently, but serve as a cautionary note to all riders of high-end roller coasters—with hemophilia, or without.

My advice? Take some precautions. Level the playing field by giving your child a prophylactic infusion of factor the morning of your visit to a theme park. Yesterday’s dose is not sufficient! Don’t wait until your child reports the symptoms of a bleed—it may be too late. Besides, your child is not going to report the flop he took running to the haunted house until you’re stuck in traffic on the long, long ride home.

Infuse first, then have a great time!

Dr. Richard Lipton was the physician in charge of the hemophilia treatment center at the Long Island Jewish Medical Center. As a United States Air Force Physician (1966–1968), Dr. Lipton knew several fighter pilots, who took him on “joy rides” (with lots of G-forces) that more than fulfilled his childhood fantasies. He is now retired.

 

 

Call of the Wild!!

With only five days and 250 miles to go, Barry Haarde is entering the final stretch of his Wheels for the World bike tour to raise funds for Save One Life.

Barry, an avid cyclist with hemophilia, is completing the last leg of a 1,000 mile trek on the Alaska Highway. At the 500-mile mark of his original 2,000 mile route, he collided with another cyclist (who ended up going home with a broken pelvis) and Barry has been showing his true grit through bumps, bruises, a very sore back and lots of factor infusions to stay the course. Given his accident, 1,000 miles alone will be a major achievement!

Dubbed “Call of the Wild,” this is Barry’s sixth long-distance bicycle tour. Call of the Wild started in Dawson Creek, British Columbia and is ending in Anchorage, Alaska. His first five tours totaled 19,000 miles and raised over $200,000 for Save One Life!

What’s remarkable about this achievement is that Barry has hemophilia, HIV and a contracted knee joint… health issues that would stop most people from considering this audacious ride. But Barry is not most people…he’s driven by memories of the brother and brother-in-law he lost to hemophilia and HIV, and all the friends in the community lost to HIV. In addition, he knows firsthand the pain suffered by those in developing countries who often lack access to blood-clotting medicine.

Save One Life is an international nonprofit that provides direct support for families with bleeding disorders in developing countries. Save One Life offers families individual sponsorships, college and vocational school scholarships, and micro-enterprise grants. I founded Save One Life in 2001 to engage families who have access to blood-clotting medicine and great medical care to assist families with bleeding disorders who need our help. Many survive on only $1 a day. Save One Life currently provides sponsorships to 1,323 individuals in 12 countries, through over 450 sponsors. Barry is one of them!

Only $3,000 more is needed to reach Barry’s fundraising goal of $35,000. Donate today at Save One Life. And consider sponsoring a child in need.

 

Thank you, Barry!

Follow Barry’s journey on Facebook here!

What Does Gene Therapy Mean to YOU?

Written by Laurie Kelley 
Originally published in PEN, May 2017  

Ladonna Pettus remembers the cover of Hemalog, a hemophilia magazine from 1990, promising “A Cure by the Year 2000?” It seemed at once like a vision and a done deal. Ladonna’s son with hemophilia was around two at the time. She recalls, “I had such hope. He is almost 30 now.”
Many parents who remember that magazine cover had those hopes. Their children are adults now, and although gene therapy trials are underway, it seems that the passion and dreams for a cure have been tempered. Alvin Luk, head of clinical research and operations at Spark Therapeutics, is working on hemophilia gene therapy. He offers, “We all underestimated the complexity of gene transfer.”
Maybe this is why, when I repeatedly asked 2,600-plus hemophilia “friends” on Facebook about their thoughts on gene therapy, only a handful of people replied. I’m sharing their comments here. Normally, the hemophilia community is vocal and active. Does this lack of response indicate that we are mostly unaware when it comes to gene therapy? Are we not sure what it is?
 
Defining gene therapy: A cure?
Parents and patients sometimes use the terms “gene therapy” and “cure” interchangeably. But the definitions aren’t the same. When we think of a cure, we think of eradicating the disorder or disease. In other words, a person with hemophilia no longer has it. In fact, a permanent cure for hemophilia already does exist. Steven Riedle notes that his brother with hemophilia had a liver transplant in October 2016, and is indeed cured of hemophilia. But a liver transplant is not a feasible option. 1 Many patients and caregivers are waiting—hoping—for a safe, widely available therapy that will cure hemophilia permanently. Yet we may need to adjust our definition of cure. Community members who responded to my questions seem to realize that most current gene therapy trials promise to make hemophilia less severe by increasing circulating levels of factor in the blood. Very few patients or parents understand gene therapy as thoroughly as Ray Stanhope, former National Hemophilia Foundation president, and person with hemophilia. He defines gene therapy as “the use of a viral vector to modify cells in the body to produce an additional specific protein which is either missing or produced at a lower than normal level in a person with hemophilia.”2 What Ray describes is not necessarily a cure, but an improved therapy.
 
What level of success?
If current gene therapy trials promise to increase circulating factor in the bloodstream, what level would be considered successful—a “cure”? Remember that severe hemophilia means less than 1% circulating factor, moderate means greater than 1% to 5%, and mild means 6% to 50%. Anything over 50% is considered in the normal range. 3 For Ray, levels of circulating factor would have to be well over 40% and closer to 50% (normal) to be considered a cure.
But others think that even converting someone from severe to mild hemophilia could be considered a success. Nichole Foley writes, “I think taking a person from severe to mild hemophilia is enough of an advantage for some of these kids that have constant challenges, and hopefully it will alleviate inhibitor issues.”
Bryce Loehrke says, “If gene therapy could permanently bring me to the levels of even mild hemophilia, I would consider myself cured for the most part. Having severe hemophilia A, I’ve often said that those with mild hemophilia don’t even have hemophilia. I don’t mean to diminish the fact that they still have issues from it periodically, but often with much less severity or frequency, sometimes to the point of not knowing they have it until later in life.” Tina Ruis takes this even further. “My 24-year-old son with severe hemophilia B—his left leg is unbearable. His calf is massive, and he can barely move without a walker. Levels of 11% to 15% would be worthwhile; over 25% would make me cry with joy.”
Stephen Brewer would be happy if gene therapy worked, even if it wasn’t permanent: “I would accept having mild hemophilia even if only for a few years.”
Chris Templin and his daughter both have hemophilia B. Chris notes that aiming for “mild” hemophilia is fraught with inconsistencies. “I think it’s interesting how people think all those with mild hemophilia bleed less then severe hemophilia patients. I know some milds who bleed more than some severe patients.”
 
The price of success
If gene therapy is successful and becomes available, how much would it cost? Some families think that because gene therapy trials are being held at university hospitals and hemophilia treatment centers, its cost may be lower than that of current commercial therapies. But this is not correct, because the trials are underwritten by pharmaceutical companies and the manufacturing process would ultimately need to be upscaled by a commercial pharmaceutical company.
    The issue of cost for a new therapy is complex, and includes these questions:
    • What is an acceptable therapeutic factor level: moderate, mild, normal?
    • How long will the treatment last: three years? permanently?
    • Will other factor products need to be used during the treatment period?
 
Ray estimates the cost of a one-time treatment of gene therapy at “close to $1 million, given the low number of patients, the cost of research and development, and assuming that the therapy is successful for four years.” He adds, “For the manufacturers, as much as they can charge; for the insurers, the least amount they have to pay.” Nichole Foley doesn’t care: “Cost-wise, I am sure it will be astronomical, but if [gene therapy] enables kids to live a normal life, I’d think it would be worth it!” Bryce believes, “If there’s an effective lifetime cure, $250,000 will be a lowball figure. We need to convince insurance providers of the long-term savings of a permanent or semipermanent cure.”
 
What if gene therapy is good for only a few years?
The term “cure” isn’t applicable at all if gene therapy—even if it brings your factor levels to normal—lasts for only a few years. This is a real concern.
Ray explains: “Given that the current vectors are viral and the immune system develops a response to that vector so that once used, it cannot be used again, this is problematic if the period of time that the treatment persists is short. There may not be time to develop an alternate type of vector. However, given the speed at which medical advances are occurring and accelerating, having the treatment persist for more than ten years might be enough to get you to the next vector, whatever that might be.”3
Amber Brandt, mother of a child with hemophilia, worries, “Regular factor is so expensive, I don’t see gene therapy being cheap by any means. And I’m sure it would be a huge struggle to get insurance to cover it. But if it only lasts a few years, I don’t even think it would be worth [trying] it at all.”
 
Wait-and-see approach
Patients who don’t see any solutions to these concerns may adopt a wait-and-see approach. Some are inherently mistrustful of playing with genes, or of the whole commercial industry of factor manufacturing. Some feel that current therapies are good enough for now.
Brandi Worthington admits, “I don’t know anything about gene therapy.” Amber adds, “It’s fascinating, but I would never choose that option for my son. He can choose that if he wants when he is an adult.” “I won’t be a first adopter for gene therapy by any means,” declares Bryce, “primarily due to distrust of the entire pharmaceutical industry for various legitimate and historical reasons. We need to know the consequences as well as benefits [of gene therapy].” Ray concludes, “Depending on the factor levels achieved and the duration of the treatment and the usable number of vectors…I might wait and see.”
 
Stepping-stone to a cure
Ray understands well the nuances and importance of educating the hemophilia community about gene therapy. Parents and patients will one day need to make an informed decision about whether to participate in it. “We as a community first need to define the parameters of what we would consider a cure,” says Ray. “I have always had a strict interpretation of this word. A cure would be a single treatment that provides normal hemostasis over the lifetime of the person living with hemophilia. Anything less than this should be considered a stepping-stone toward a cure.”
Stephen still has hope and carries the definition of cure even further. “Looking forward, a cure would include increasing circulating factor levels, [and] eliminate hemophilia from future generations [of a family].4 This is the ideal I hope for.”
1. Factors VIII and IX are produced primarily in the liver, although the cells lining the blood vessels also produce and hold reserves of factor VIII for release into the bloodstream when needed. Replacing the liver indeed cures hemophilia, but this is not deemed a viable option for treatment because it is too risky. Only patients with hemophilia who face liver failure are considered for this operation.
2.  A vector is a modified virus used by molecular biologists to deliver genetic material into cells.
3.  Among the general population, normal factor levels are between 50% and 150%, with most people being close to 100%.  
4.  Changing the genetics of future generations is not gene therapy, but human germline engineering. This practice is currently banned. It’s highly unpredictable, dangerous, and considered unethical.

La-Va Land

A brief respite from all things hemophilia as I share my adventure to the Nyiragonga Crater in the Democratic Republic of the Congo.
 

After the hemophilia workshop in Rwanda, I decided to have a brief adventure. On Saturday, June 17, I packed
up my hiking gear, and waited in the lobby of the Mille Collines (of “Hotel Rwanda” fame). My driver Faustin arrived,
and we loaded up the jeep and took off. He was nice: clean cut, friendly, like
most Africans seem to be. We drove through Kigali, where there was a bit of Saturday
morning traffic on the narrow, two-lane road.

The drive was a good four hours to the Rwanda border. I looked out the window at the pink stucco houses perched on the
rolling hills of Kigali to my right; to my left, more tropical pink and
turquoise blue painted homes on top of red dirt. Despite the dirt, everything
is clean. No paper, plastic bags, trash. While poor, the Rwandans have pride.
And strict laws that prohibit not only littering, but even bringing plastic
bags into Rwanda. I’ve never seen such a clean developing country before like Rwanda.
The rolling hillsides gave way to lush forests, and tilled fields on graduated steps, all
pattered in different crops. Faustin pointed out, There’s sorghum, there’s
maize, and there’s tea. All these created a patch-work green quilt of crops
spreading out before us. At the top of the quilted fields, the lone trees that
have not been chopped down crown the tops of each hill. Land of a Thousand
Hills.
The roads
are excellent and winding, going up and up, higher and higher, and I thought,
Barry Haarde just has to do Wheels for the World in Rwanda! And sure enough, we
pass impressive, ripped Rwandans cycling up these killer mountains, wearing
professional gear. Jaw-dropping power!
They, like
us, pass by hundreds of people walking. Everyone in Rwanda walks. Children
struggle with big yellow containers holding water. Old women balance primary
color buckets on their heads, filled with potatoes to sell. Women, men and
children sway under 20-foot tree trunks, sometimes as many as five on one
person, to bring home to chop into firewood. Most people don’t have cars, or
running water. So water and fuel for the fire must be sought or bought and
carried home. Mile after mile, men push bicycles up these hilly roads, which
are laden with several enormous sacks of potatoes. We drive by one bicycle
which only had tires visible; the entire bike and rider, pushing it, was engulfed
in a mountain of kindling. No one hitches for a ride. Everyone is working. By
noon we see impeccably dressed people in large groups walking along: Seventh
Day Adventists returning from church. How handsome they all look, in contrast
to the dusty roads. Faustin pulls the car over and we get quizzical stares, but
he introduces me to his father, in one of the groups. Expressions change to
greetings of joy.
At last we reach Gisenyi, a town crouched on the shores of Lake
Kivu, and “Paradis Malahide,” my mid-range hotel. It’s fine with me, quite
nice. It has a Caribbean feel to it. We check in, and two smiling Masaai
promptly approach and ask if I want to buy sandals.
My room is up on the second floor, all wood, with a beautiful view of Lake Kivu. I
instantly want to just curl up with my book on Rwanda and relax. First lunch:
so we order and sit by the lake. We
eat lunch, which is an almost inedible sandwich for me. I don’t eat it all, as
the chicken slivers in it are dark meat, greatly overcooked. But Faustin
unabashedly takes whatever I have left and eats it, telling me that due to the
shortages of food in the country in the past, nothing goes to waste. He eats
everything in front of him.
Laurie Kelley and Faustin

I ascend the
steps to my room, sort out my things, grab my iPad and read an excellent book
about President Paul Kagame, once leader of the rebellion to overthrow the
regime responsible for the genocide, and later president of Rwanda. A
fascinating man and leader. I order African tea, which is so delicious and
spicy, and watch as a sakabaka (black
kite) swoops down to the beach then back up again to a tree top. Then there are
two, doing a ritual dance, up and down, crisscrossing in the cloudless sky.

I read until dinner, and then order pasta,
which maybe is the food least likely to be ruined by cooking (and I would know as I ruin everything I cook). It’s fine, but
too much, and I eat only half the dish and half a glass of wine. I return to my
room, roll down the mosquito netting and read till I fall asleep, serenaded by
the whirring of the crickets and occasional bird calls.
In the morning, Sunday, I pack up and am
ready by 7 am, as planned, with no breakfast. Just a take-out order of bread
and bananas. We head for
the Rwandan border. Rwanda customs is in a huge building, very out of place in this
remote area. It’s cavernous, empty and air conditioned. Gleaming floors and an
efficient process for passing to the Democratic Republic of the Congo (DRC). We
wait in line, get a stamp, and done!

We then walk across the border, showing our
passport and stamps to the agents seated in the searing sun. As soon as we walk
across the border, the quality of life plummets. It’s an incredible contrast to
the pretty streets of Rwanda. Both are poor countries; both have dusty roads
and homes of rock with corrugated metal roofs. The main difference is that
Rwanda is kept clean: no trash anywhere. In the DRC, people toss wrappers and
trash at their feet. In Rwanda in the
morning, you will see women with their home made brooms of corn husks or branches,
sweeping out the streets, of any stray paper or even dried leaves… even far
away from Kigali on the main road to the DRC, these city workers are sweeping
up fallen leaves from the trees that landed on the road side! Not in the DRC.
It is an impoverished country, psychically and mentally.

 

 
Our new driver picks me up, and Faustin waves
good bye as he returns to Rwanda on foot. I climb into the new jeep and away we
go to Mt. Nyiragonga, a large active volcano. My guide, Tresor, can’t wait to
tell me about the DRC. We are now in Goma, a town made famous during the 1994
genocide, into which a huge number of Hutu refugees flowed after the Tutsi massacre
stopped. They crushed this town, and created one of the worst humanitarian
crises of our times. It was only then, when cholera swept through the camp,
killing thousands and orphaning thousands, that the West finally sat up and
noted that Rwanda had a few problems. That’s a story for another time but the
history of Rwanda and its genocide is absolutely fascinating; I’m reading my
fourth book about it.
We stop at a statue in the middle of Goma, of
a man pushing a chukudu, a two-wheel
wooden “motorcycle,” and Tresor explains that this statue, erected in 2009, is
the symbol of the DRC, and how hard its people work. That’s true: everyone is
working. There are no beggars in such a place, as tourism is limited. I find
you mostly have beggars when there is an influx of tourists.
Goma is grey. Everything, from streets to
buildings and even the color of the people, is chalky, dusty grey. Partly it is
from living in lava-land. The last eruption of Nyiragonga was in January 17, 2002,
when the lava lake collapsed, and lava sped at 60 mph (the fastest ever
recorded!) and reached Goma, coating everything in molten rock, which hardened
to a shell. About 147 people died, and 120,000 were left homeless. An ongoing
threat, besides the rumblings of this active volcano, is carbon dioxide
emissions from the ground, called mazuku,
which kills, as recently as 2016.
Now, everywhere you look you see piles of
lava rock, home built of lava rock, and the color charcoal grey.
Laurie Kelley and Tresor
Soon, the
grey gives way to red dust, as we drive along the main road to the national
park. Within 20 minutes we arrive. A group of men shuffle their feet in place
along the roadside, perhaps waiting to be chosen as porters for the mzungu (white person) who will ascend the volcano
today. The driveway to the registration cabin is so steep we have to get out
and walk, so the jeep can make it up. Welcome to La-Va Land!
It takes
about 30 minutes to sign in, and wait for the rest of our group. We have only
a few people in our group, and indeed, only a few can go at a time. First, it’s
dangerous and a strenuous hike. Second, at the rim of the volcano, where we
will camp overnight, there are only a few sheds (A-frames made of metal). Our
group? George, an FBI agent working in Nigeria, and a dead ringer for Tom
Brady. Orlando, a very athletic flight attendant with Edelweiss Air in Switzerland.
And Franziska and Bacadi, a 30-year-old German woman and her Zanzibarian
boyfriend. This was a great group to hike with and with a few porters (mine is
Josef, who will carry my duffel bag), Tresor and two armed rangers, we head
out!


This was
overall a very strenuous hike, more
than I imagined. Despite being in pretty good shape, I found it hard. In less
than a year, I’ve summited Kilimanjaro (a 6-day hike, 19,341 ft), and then Everest
base camp (9 day, 17,500 ft) but this 11,380 footer was a killer! Partly it’s
the 45° angle that strains the quads and calves; partly it’s the loose lava
rocks. At times you ware walking on wet ground; at others, on loose lava scree;
then you will walk on rocks that twist ever which way and are as sharp as
razors. And there’s the altitude. We were all huffing and puffing our way up,
quads screaming at times. And we need to ascend quickly. Up straight to the
top; sleep overnight, then descend first thing in the morning.
Franziska
and I fell in to talking: she and Bacadi work at a hotel in Zanzibar (one of my
favorite places to visit!). She speaks several languages, but he! He speaks
Swahili, English, German, Italian, French and is learning Spanish! And he was
such a nice guy. I admired how kind he was to his girlfriend. Franziska
struggled right from the start. She was nervous as her fitness level was
self-admittedly not high. I tried to reassure by saying it’s not a competition;
we are in no rush. We’ll all wait. And also what I have in fitness is negated
by age! After all, I’m almost twice as old as her.
Still, it
was a slow hike, with Franziska asking childlike at each rest stop, How much
longer till the next stop?
The higher
we went up, the quieter the group became, as we focused on not twisting our
ankles, and breathing deeply. The air was moist, the vegetation thick and rich.
Tresor stopped us on one rocky section to look at something amidst the rock
piles. I saw nothing. It’s a bird! He said. I didn’t see it. Finally, its form
emerged out of the rocks, like a 3-D photo in which you have to blur your eyes
to see the picture. It was a nightjar, sitting quietly, blinking in the sunlight. I
thought it injured, but when Foramen, our guard, touched it with his gun tip,
the bird arched its wings to ward us off, and there underneath it, warm and
safe, was a single white egg. After a quick snap of the camera, we trudged on.
Eventually
the moist forest gave way to an alpine climate, with low scrub brush and trees
similar to those I’ve seen on Kilimanjaro. The air grew very cool and
we donned jackets. The hillside became even more rocky, in fact, all rocks now.
Sometimes you could find where the spilled lava river solidified, and you felt
like you were walking on a smooth river of stone. Then it changed to sharp,
black, porous lava. Our feet, stepping and kicking them, caused a tinkling
sound, like crystal. Despite its menacing look, the lava sounded like the
finest Waterford.
Finally we
reached our goal, the summit of Nyiragonga, 11,384 feet! Clouds moved in,
sometimes obscuring our view. All of us were anxious to see the famed lava
lake. We ditched out backpacks, threw on extra layers and climbed up a few more
feet to perch on the rim. And I mean perch. It’s a sheer drop down into the
volcano, at the bottom of which is a red, thick, ever-shifting lake of lava, complete
with red waves, red flames shooting upward, bubbling molten rock. It’s like a
prehistoric vision of what hell might be like. If I were an uneducated person,
living centuries ago, this would awe and frighten (it still does) and I would
believe that this is Hell, literally. It looks like the doorway to the Underworld,
where people would burn in its fire for eternity.
But, it’s
just a volcano. And a magnificent one.
We stood for
the longest time, mesmerized, silent except for some oohs and ahhs. Clouds came
and went, but finally they parted to give us a good view of the lake. To hold
my cameras still, I crouched down on the lava, which was mighty uncomfortable;
lava is razor-sharp and hurts. After about 30 minutes of trying to think of
poetry or words that could do this vision justice, I groped my way to my metal
tent. Inside was just a bare mattress, onto which I threw my wonderfully warm
sleeping bag and my gear. I brought a headlamp, essential, and all the usual accessories.
I added layers and layers as it was cold, about 40°. Not freezing, but still I
could see my breath. Dinner was called and we fumbled our way on the pitched
slope in the dark to the mess tent, which had a charcoal fire on the ground. The air was nearly unbreathable inside. Tresor asked me if we used charcoal back home.
Laurie Kelley at volcano rim
It was cold
and dirty, unlike my other adventure trips. The food wasn’t particularly good, especially
inedible was the chicken. Franziska and Bacadi joined us; they signed up for
this on a whim and were fairly unprepared! No gloves and no food. We had them
eat ours, gladly, as I ate almost nothing. Then back to bed where I read a bit
before falling into a deep sleep.
I was awake
at 4 am, happy and content to be on this dirty volcano, and didn’t even need a
second look at the lava lake (which was obscured by clouds I later learned). I
wanted to get back to Kigali for my 7:30 pm flight, a long ways away. So I was
ready—even had mascara and eye liner on!—and after a quick bite we started
down.
My quads
ached and my knees buckled from the 7-hour hike yesterday, and minimal food and
nutrients. I actually had to be careful using my left knee so I didn’t wrench
it. Going downhill on loose lava at a 45° angle is tricky. I slipped a few
times, fearful of landing in the mud (the overnight moisture softened all the earth and
made the rocks slippery) so Foramen held his hand out to me often to help me.
It was a long, quiet three-hour hike back to base. But as we descended towards
the end, I heard a whoop and a rush, and Franziska flew past me and grabbed Foramen!
Get me off this mountain! she happily squealed! I teased her that she was
fooling us about her fitness level. She actually felt good while I was trashed!
Back at base
we exchanged email addresses, waved good-bye, and got into our jeeps to head
for home. I tried to hurry Tresor, but he assured me that we had plenty of
time. And he was right. About 30 minutes later, I walked across
the border into Rwanda again with Tresor, who left me in the hands of Chris, my
drive back to Kigali.
I was tired,
and after a 30-minute drive I climbed into the back seat to try to sleep before
the long trip home. After an hour I gave up and climbed back into the front
seat. Chris and I chatted. I told him I had used Gorilla Trek Africa three
years ago to find gorillas in Rwanda and I loved my guides, who were so good, I
decided to use the outfitter again. He asked who they were: Scodius (who is
friends with me on FB) and a young guy whose name I don’t recall… Chris was
silent then said quietly, That was me.
And he laughed and laughed and I felt all barriers falling. Now I recall!
He and Scodius were so nice then, and I even invited them to
dine with me in the dining room, instead of having them go back to the lesser quality guides’
hotel. We sang Christian songs all the way back to Kigali, I recall, and Chris
gave me a CD with all the songs on it. So this was really nice to see him again and connect.
He shared
how he was born in the jungle, and called himself “Son of Gorillas.” His mother
couldn’t get to the hospital or even midwife; she had been out collecting
firewood, and so she gave birth right in the jungle! To cut the umbilical cord,
one of the women she was with said to bite it. No one would bite it! You do it,
you do it, they all shouted at each other. Then finally they sharpened the edge
of a fan palm, which is tough and sharp anyway, and they cut it. Twelve kids
later, they all kid Chris about being the “son of a gorilla.” Chris became
sober when I asked about his mother now: killed in the genocide, along with a
sister. There’s just no escaping the genocide impact on this country.
We stopped
at a convenience store and bought muffins, which I promptly dropped in the dirt
on the roadside, but ate anyway, after dusting it off. I am getting way too chancy in my habits overseas!
Back to
Kigali, to the Mille Collines, which kindly lent me a room for one hour to
shower and repack, and then Chris brought me to the small international airport. We had to
stop at the airport entrance, unload all the luggage and a Belgium malnoir sniffed
through everything. (Rwanda has tight security.)
And that was
that. I tipped Chris, gave him a hug, settled at a coffee shop in the brilliant sunshine,
and waited for my flight. Eventually it would be a 7:40 pm flight to Nairobi
with a 2-hour layover, a 7.5 hour flight to Amsterdam, with a three hour
layover, and a 7.5 hour flight to Boston.
A 29-hour transit but coming from Africa, decades in distance. And I cannot wait to return. Africa is magical, with stunning natural beauty and friendly people, and a lifetime of work in hemophilia to do.
See the full gallery of photos for the DR Congo here.
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