2017

What’s Your Everest?

Laurie Kelley February 20, 2017

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!

Laurie Kelley February 13, 2017

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?

Laurie Kelley February 6, 2017

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.

Your New Secret Weapon

Laurie Kelley January 30, 2017

For me, documentation has always been key, and I’ve kept everything from my past.

Actress Diane Keaton

I can’t say I’ve kept everything from my past, but I’m pretty good at recording things. Part of that is the journalist in me, part of it is the economist I used to be. When my first child was born with hemophilia, it seemed natural to me to use a spreadsheet to record every single bleed and outcome, log in every single vial of factor with lot number and assay size, and record every single doctor’s visit. I thought everyone did that. Data is valuable.

Data and documentation may also be your secret weapon in the new health care environment. None of us really knows yet how the new administration will affect the Affordable Care Act, but it’s trying to repeal it. While we wait for the dust to settle, the single best thing you can do right now, if you are not already doing it, is document everything. Every bleed. Every vial of factor. Every doctor’s visit. Every Explanation of Benefit (you are receiving them, right?). Every insurance paper. And above all, every phone call to your insurance company.

As someone who never documented phone calls, I learned the hard way how important this is. About 12 years ago some unsavory characters (not from the hemophilia community) had a business run-in with me and it required legal mediation. As my lawyer and I sat across from them and their lawyer, I was shocked, annoyed and impressed that they had documented every single phone call we had ever made, and were even quoting me! Even while I fumed, I thought, What a great idea. Note to self: document all calls.

And so I do. It’s been helpful for recalling details, promises, and problems. It impresses people. It frees me up to not try to remember everything later on.

You don’t need to document to impress people, but you will be glad if you document your insurance calls. You may one day need these notes to waive a fee, to get a reimbursement, or to file a complaint. Something tells me we’re in for a lot of patient complaints down the road!

Hemophilia Federation of America has made documentation easier. Their Patient Insurance Log Book has pages already set up for you to log in calls. And at the end of the book is a complete glossary of insurance terms, and even the procedures to file a complaint for each of the major insurance companies!

So get your secret weapon ready: order a Patient Insurance Log Book and record everything regarding insurance. It can save time—and money—someday.

Order the Patient Insurance Log Book at www.hemophiliafed.org or call 800-230-9797.

Rx for Post-Inauguration Healthcare Uncertainty

Laurie Kelley January 23, 2017

To live in freedom, one must grow used to a life full of agitation, change and danger. — Alexis de Tocqueville
 
The inauguration is over and we have a new president. The day after the inauguration, mass protests for women’s rights occurred in major cities across America. There’s a predominant feeling of fear and uncertainty in America now, perhaps more so than with any other new president that I can ever remember. Some of it is reflective of the times we are in: wars in the Middle East, radical terrorist groups, manufacturing decline and job outsourcing, dictators with their fingers on threatening global weapons and a seeming hatred for America. Uncertainty clouds our future look at the economy, international stability, and above all for families with bleeding disorders, the fate of the Affordable Care Act.

I recall in 2008 we hit the road to present our symposia “Pulse on the Road” to several states each year, to alert our community to the coming insurance reform. In 2009 so many audiences we met with had no clue what was about to happen. Insurance caps, copays, tiers, PBMs, formularies, Medicaid changes, preauthorization—this was all new stuff. Around 2011, we noticed a marked change. Audiences were picking up all the terms and concepts. Why? They were beginning to experience the changes. Some of the changes were brilliant: no caps! You could get as much factor as you needed. No pre-existing conditions! Really, anyone with hemophilia should be able to get insurance. And limits to out-of-pocket costs. The Medicaid expansion gave people in some states eligibility. Millions of people accessed healthcare that didn’t have it before.

But the “affordable” in Affordable Care Act was always suspect to me. Who was going to pay for these changes? No annual caps and no lifetime limits meant we could get the drugs we needed, a blessing for those with chronic disorders. The parents of children with hemophilia who burned through $1 million of coverage in a few years would have had to change insurance or change jobs even. Some parents simply couldn’t do that. Now, no longer, thanks to the ACA.

But we saw that insurance companies—payers—were being hit with the skyrocketing costs as a result. Their countermove was not surprising: cost-shifting to consumers. This manifested in different ways: restriction of choice. You suddenly couldn’t get the specialty pharmacy you wanted. Next came restrictions of drugs to a formulary. You could get factor but maybe not the one you want. Higher copays—way higher. Higher premiums. The benefits that seemed so great suddenly had a consequence that bit into our disposable income while restricting access to some of the therapies we wanted.

The ACA became a double-edged sword. Payers were fighting back. 

President Trump, as he pledged, on his first day on the job, issued an executive order addressing the Affordable Care Act, basically seeking repeal of it. Now, nothing can happen overnight. The administration needs heads of the departments of Health and Human Services, Treasury and the CMS Administration and IRS Commissioner to be confirmed in order to act on this executive order. This will take time.

While we wait, the best advice our Pulse on the Road team kept giving our audiences in these truly uncertain times:

1.     Read your insurance plan every year at enrollment time. So much is changing so fast, and you must know the print, and the fine print. Don’t ever assume that just because you have the same employer, same insurer and same plan, things are staying the same.
2.     Calculate annual out-of-pocket costs. You need to have a few thousand saved up just to cover rising coinsurance, copays and deductibles.
3.     Sign up for your factor manufacturer’s co-pay assistance program. They all have them, and from what the manufacturers tell me, a lot of people in the bleeding disorder community are not taking advantage of them. Big mistake!
4.     Sign up for a free factor program. You can get limited free trial doses of a different product from what you are on; or your factor manufacturer may have a compassionate program to keep you, the loyal customer, with factor until you can get insurance to cover you.
5.     Talk to your social worker at your HTC and/or your state hemophilia organization to get up-to-date information about what’s happening in your state, with your plan.

It’s going to be an uncertain time for a while, but the bleeding disorder community is one of the best medical patient communities for advocating for its needs, and for keeping informed. Sign up at www.hemophilia.org or www.hemophiliafed.org for current news about the ACA, and health care reform and repeal as it relates to bleeding disorders.