February 2017

Dave Madeiros: Remembering a Visionary Leader

One month from today I leave for Nepal, to visit the families we support through Save One Life and then to hike 9 days through the Himalayas to Everest base camp with Chris Bombardier, one of my hemophilia heroes!

Thinking of this trip and Chris got me thinking about another hemo-hero I knew once. And his legacy is so important because almost everything we worry about now regarding health insurance coverage, he warned us about back in 2003. Dave Madeiros was our Paul Revere, sounding the alarm about vast and sweeping changes in healthcare insurance coverage that would deeply impact us all. And he was right.

Dave Madeiros and his beloved
Shelby Mustang
Dave had hemophilia, HIV and hepatitis C, as did his brother Larry. Proactive positivism seems to run in the blood as well. Both men were intelligent, handsome, smiling, gregarious and outrageously charming. And Larry was already quite famous: he and his wife Carol became the first US couple to successfully employ a technique developed in Italy that would allow them to have a healthy child despite Larry having HIV. 

I met Larry at the tail end of an NHF meeting back in 1999, I believe. He was so full of passion and ideas. He wanted to try to work together with me. I met Dave later on; I can’t even recall when exactly. But he knew I had a newsletter, PEN, and knew I was well known in the community. He had a message to get out to our community.

The good times were coming to a close. All that we knew about healthcare insurance was going to radically change.

I first thought Dave an alarmist, or maybe at best, just overly dramatic. But no. Dave was a rare leader, a visionary. He knew exactly what he was saying, and sought to convince me. He invited me to come quarterly to his office in Boca Raton, Florida to have brainstorming sessions with his team. Dave was founder of the Factor Foundation of America, a nonprofit. Its mission was to provide financial support and education to the hemophilia community. He funded it through the sales of factor. He had established a pharmacy, and up to 70% of profits would be channeled back into the community.

At a time when CEOs of specialty pharmacies were getting quite rich off their earnings, and the specialty pharmacy industry was very much unmonitored by the government, Dave stood out. He was a man of his word. I met his wife Kim and visited his home. It was modest, his sole luxury a classic Shelby Mustang he adored.
His driving force was to help the community. Return profits back to it to fund programs, and most of all to alert it. At one meeting in his Boca Raton office, after he had explained to me what was going to happen, I said, “It’s like a coming storm.” Dave turned around a white board he had against the wall and on it were the very words The Coming Storm. It was eerily coincidental how similar we saw this threat to our community.

Dave educated me about pharmacy benefit managers (PBM) which threatened to take over the factor distribution business (they since have). No one at NHF had even heard of a PBM. Neither had I. He told me about coming formulary restrictions, predicted specialty pharmacy consolidation (true on a massive scale) and cut backs in reimbursement, which would cause funding to NHF chapters and programs to disappear. Insurers would question having so many products to choose from (they do now) and would seek to limit choice (a way of life now).

Dave was visionary; he saw it all. He fed all this information to me, to write a three-part series in PEN starting in 2005, about coming insurance changes and how they would impact our community.

After our articles were published, the alarm was sounded. Our advocacy groups started to plan and respond, and proactively meet with insurers to educate them about our needs, and to maintain access to choice.

Some of the happiest memories of working in hemophilia were my trips down to Boca. I recall how trusting Dave was of everyone, how open he was with his personal struggles and his dreams. How good-hearted he was to all. He adored his wife Kim. His dedication and compassion were immense: he and Kim adopted a child with hemophilia.

Dave Madeiros and son Jason
We last met on February 24, 2004, in Boca, after we spent the previous two days working together with his team. We were having breakfast, talking about next steps for his company and plans. I left to go back to Boston and two days later, one of Dave’s business partners called to say that Dave had collapsed the day after I left, and was rushed to the hospital. He passed on February 29, from liver failure. We were all devastated. Of all the people we have lost in the community, his affected me the most. He was like a brother, he was a friend, and above all, a mentor. A leader of rare qualities.

Our national and state groups are doing a superb job of engaging with the government about Medicaid and the private insurers about preserving our hard-earned coverage. But I sometimes wonder where we might be if Dave were still here, advocating for us. What would he think of the ACA? The current attempts to  repeal the ACA?

When I returned to Boca a few days later to attend Dave’s funeral, Kim said to me, “He thought the world of you.” I thought the world of him. And the world is so empty without his leadership and vision, his laughs and ideas. Kim wrote in an homage to Dave, “Dave loved his life and lived it with energy, gusto and bravado. To have known Dave is to be touched by a loving and lasting force forever.” Thirteen years later these words are still so true.

We miss Dave, but our community continues his legacy to maintain access to therapies, and seek coverage for all with bleeding disorders. Dave died while doing battle, like so many classic heroes. It’s a battle I hope we will win.

What’s Your Everest?

I was scanning through Facebook, wondering what to write about for Sunday night, and came across a post by one of my hemo-heroes, Luis Andres Aguayo. I’ve never met “L.A.”, though he wrote an article for PEN last year and we’ve chatted on the phone. He is a body-builder, and posts regularly about his competitions and more importantly about his training. 
Despite the fact that I’m old enough to be his mother, his posts inspire me; his life inspires me. His physique is incredible. He has absolutely sculpted it through determination, goal-setting, pain, and infinite number of hours in the gym. All the while, he remains humble and a joy to speak with. 
Chris Bombardier on Carstenz Pyramid, one of
the Seven Summits
I’m training too, for a mountain trek to Everest base camp in April with another hemo-hero, Chris Bombardier from Colorado. Chris also has goals, determination and infinite hours spent hiking and climbing to prepare. And… I am also old enough to be his mother!
Training is hard at age 59, even when you think you’re in pretty good shape. These two heroes have hemophilia, and when I think of what they are accomplishing in spite of their disorders, I get motivated to push harder. Chris has already summited five of the Seven Summits! L.A. came close to winning being on the cover of a men’s fitness magazine! I love mountain climbing, and I love weight training, so it’s natural I enjoy following these guys as they train.
But it’s tough for me. Even just five years ago I saw tremendous change when I worked out consistently. Now, it’s like everything takes twice as much for half the results. But I keep going!
Tonight I am aching all over from a double whammy: training at 8 am for an hour with my trainer Dan French, and later in the day running 6 miles in the 45° weather. My treadmill died last week (no, not from overusing it) and nothing beats running outside. I felt good but ouch, later on, aching knees and back.
One of my hemo-heroes!
I have 6 weeks left before the Everest trek. Here’s what a typical week is like while training:
Sunday: Day off. Recovery is very important for the body, especially at this age. I’m paranoid about getting an injury which is all too easy to do.
Monday: Yoga for 30 minutes (a MUST!). Training with Dan, upper body and abs, one hour.
Tuesday: Yoga. Cardio… either in the gym in Salisbury, Massachusetts, or at my home gym. I can ride my stationery bike while watching a documentary about mountain climbing, or throw on a 20-lb backpack and hike up and down for 90 ridiculous minutes on a plyo box over and over while watching Dr. Strange or Mad Max. Superhero movies make you feel empowered! This is a killer workout.
Wednesday: Training with Dan, lower body (tons of lunges and jump squats) and abs.
Thursday: Yoga. Cardio, maybe the elliptical for 90 minutes at the gym, excellent workout!
Friday: Yoga. Training with Dan, speed work-out. This is a killer too. Usually Dan and I chat about music, but 10 minutes into this workout I can’t talk. I even get dizzy.
Saturday: More cardio!
And food: 75% of training is eating the right food and having the right diet. Dan analyzed my diet 6 years ago when he was getting me ready for Kilimanjaro and saw I needed more water and protein, and basically overhauled how I ate. So I cut out (for the most part): soda, diet soda, fruit juice, alcohol, sugar. We don’t keep any of that in the house. No pasta, white bread, desserts. A typical day goes just like this:
Breakfast: three scrambled egg whites, cantaloupe or banana, black tea.
Lunch: (and after a workout) A protein shake with banana, pineapple (or berries), 14 raw almonds and GNC Whey protein powder. Delish.
Dinner: I don’t actually eat dinner unless I go out. Why? I don’t know how to cook and don’t even like to cook. Things burn and catch fire all the time. So I have another shake, or a salad with protein (shrimp, eggs), or a banana with organic peanut butter. I eat out about twice a week, when I’ll have fish. 
My demons? Movie popcorn and M&Ms. I love going to movies and twice I have not had movie popcorn and it was not the same experience! And Dan tells me movie popcorn is the worst thing you can eat, next to Cinnabon.
Despite having a trainer, I still get motivation from people like L.A. and Chris. As they give hope to young guys with hemophilia to reach their dreams, I hope I can inspire some moms who want to get in shape. It’s never too late to start. It helps to have a goal, a big goal, like a mountain climb. Kilimanjaro was an incredible experience, both times! And I know Everest base camp will be a dream come true. 
L.A. wrote this recently on Facebook: “Keep this in my notes! What’s your one sentence destiny? The vision you base your decisions on?” His is, “Use adversity to change others’ lives.” And Jordan Romero, the youngest person to conquer the Seven Summits, asks, “What’s Your Everest?”
I love that. Our Everest climb will put a spotlight we hope on Nepal and its people with hemophilia, who live in hardship, especially after the 2015 earthquake. We’re going to meet with the 80 people we help through Save One Life. You can follow L.A. and Chris on Facebook, and read HemaBlog to see how the training and eventually the climb are going!
Great Book I Just Read
No Summit Out of Sight: The True Story of the Youngest Person to Climb the Seven Summits
Jordan Romero
An inspirational book about the boy who summited Everest at age 13, and conquered all Seven Summits by age 15. Despite warnings from critics about having someone so young attempt something so dangerous, Jordan was well prepared, genetically-gifted and just plain lucky. He documents what inspired him, his training, his observations of the countries, people and climbs. It’s fun and interesting, and Jordan’s a marvel. He uses his climbs to motivate other children now by posing the question: What’s your Everest? A light read, but very engaging. Kudos to this remarkable young man and his family! 3/5 stars.

Discover the Brand New LivingWithHemophilia.com!

I made a pledge this year to get all of LA Kelley Communications’ books updated and back in circulation, because I love educating people about hemophilia. And information needs to be updated in this ever-changing bleeding disorder community. Please check out Bayer’s newly revised website LivingwithHemophilia.com to learn more about hemophilia and to learn about its highly effective and successful leadership program, Leadership U.  

The following content is sponsored by Bayer.

Discover the Brand New LivingWithHemophilia.com!

There is no community quite like the hemophilia community—which is why Bayer set out to create an online destination unlike any other.

Introducing the all-new LivingWithHemophilia.com, reinvented and reimagined to engage patients and caregivers like never before. This is where you’ll get the scoop on everything from the role of genetics, to information on pain management, to tips for traveling—and all things in between—with content that’s engaging, easy-to-find and relevant to you.

It’s the real talk you want, served up the way you want it. For example, the “Living With Hemophilia On Your Own Terms” video series is designed to help you understand often confusing terminology related to hemophilia—so you can feel more informed than ever.

LivingWithHemophilia.com is also home for information on Bayer Leadership U, the summer internship program for college-aged students touched by hemophilia. For more than a decade, Bayer has offered motivated, young individuals a paid, six-week internship at their U.S. headquarters in New Jersey. Leadership U interns participate in activities that sharpen leadership skills and apply these skills in a real-world corporate setting through a variety of independent projects.

For more information on the internship program, visit www.LivingWithHemophilia.com/lead. The application deadline has been extended and will be open until Wednesday, February 15, 2017.

So, that’s the story behind the all-new LivingWithHemophilia.com. Make sure you check it out!

Name Game, Game Change?

I’m thinking “game” this weekend because the Patriots are in the Super Bowl, again, and I will need to watch it like the rest of Boston. I only watched my first football game two years ago when, surprise surprise, the Patriots were in the Super Bowl. Every sports fan knows the Patriots, I am told. It’s easy to cheer for your home teams when the names (Red Sox, Patriots, Bruins, Celtics) endure for decades. It’s harder when it’s the drug companies that make your factor concentrate. There’s a lot of game changing going on lately.

The news was announced just three days ago: Biogen, maker of Eloctate and Alprolix, has spun off its hemophilia division, which has now become an entirely separate and new company called Bioverativ.

Biogen’s two revolutionary products, the first ones with a longer half-life, were game changers. Now there are a few more choices for longer half-life products, but these were the first and were rolled out with much fanfare. Then boom! Three years later, Biogen doesn’t want them anymore.

This is just a reminder to us patients that this is a marketplace, and we are consumers. And companies need to make business decisions—hence the “game.” As consumers, it’s up to us to understand how the game is played, and who are the players. The names have been changing, more rapidly than I can keep up with in the specialty pharmacy arena, and those are truly game changers.

In the factor concentrate manufacturing arena, we had two name changes just in the last few months: Biogen to Bioverativ, and Baxalta to Shire. But this has been happening for years in our community, so here’s a review. It’s worth knowing the players—of which YOU, the consumer, are the most important!

Remember Alpha? Those of you who use Alphanate or Alphanine may wonder why these drugs are called that when sold by the Spanish company Grifols. Simple: Grifols bought Alpha Therapeutics hemophilia therapies years ago and simply kept the drugs’ names the same. (It’s hard to change a drug’s name.) In 2011, Grifols also bought Talecris, making it the third-largest global manufacturer of plasma-derived therapies. Oh, and Talecris? It was a spin-off from Bayer, which didn’t want to keep plasma-therapies anymore. Bayer’s plasma-product Koate-DVI went to Talecris, and Bayer kept Kogenate FS. If you look at the Koate-DVI packaging, you’ll still see the Bayer primary color line around the box!

Baxter Healthcare produced factor concentrates like Recombinate, Advate, Hemofil M and FEIBA. It spun off its hemophilia division, which became an independent company called Baxalta. That didn’t last long. Shire, an Irish pharmaceutical company, liked what it saw and scooped it up. All the former Baxter/Baxalta products now belong to Shire.

The biggest name changer is CSL Behring. I knew it in 1987 as Armour Pharmaceutical. Then in 1996, Armour and Behringwerke (a Geman company) formed a joint venture known as Centeon. Things happen fast: in 1999, Centeon became Aventis Behring. Why? Armour’s parent companies (Rhone-Polenc Rorer and Hoechst) merged to become Aventis. Meanwhile, CSL (an Australian plasma therapies manufacturer) acquired ZLB Blood Transfusion Services. In 2004, CSL acquired Aventis Behring, to form ZLB Behring, later called CSL Behring.

(There’s a comprehensive timeline of this interesting company here.)

Genetics Institute: anyone remember that? They developed BeneFIX and ReFacto (no longer on the market). It evolved into Wyeth, and then was bought by pharma giant Pfizer Inc.

Bayer is one that seems to have stayed the same, but it’s had name changes too. Bayer bought Cutter Labs in 1978 and Miles Labs in 1979. In 1995, they all became Bayer. I think Novo Nordisk (Denmark) has stayed the same… so far!
And some companies dropped out altogether, like the American Red Cross.  And new ones entered, like Octapharma (Switzerland) and Kedrion (Italy), tapped to distribute Koate DVI for Grifols. And Aptevo Therapeutics… oh, which was owned by Cangene (Canada) first, then Cangene was bought by Emergent Biosolutions in 2014! And they all originated from Inspirational Biopharmaceuticals, which in 2013 sold all its product rights to them, and dropped out of the game.

More passes than Tom Brady!

Whew! It’s amazing tracking the history of just the name changes: but we also need to know products. We are tracking who makes what on our website Hemophilia Factor Chart by Brand, available as a download. We are updating it all the time… a necessity to keep track of this ever-changing game, and business.

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