October 2012

Hurricane Sandy: Are You Prepared?

The eastern seaboard is being pummeled by Hurricane Sandy, a fast-moving, major superstorm that thrashed Cuba, hit Florida and is currently striking the New Jersey shore (it’s been downgraded from hurricane to superstorm now). A 35 year old man in Queens, New York was killed by a falling tree; the New York City subway was shut down; and major airline routes,  heavily traveled in the east, were cancelled. Long Island is facing historic, life-threatening, massive flooding, which will paralyze services. New York airports are closed and all flights, thousands, are cancelled.

I am in Tampa, Florida and am now stuck here a few more days. But if you have to be holed up somewhere from a hurricane, Tampa is a great place to stay.

NHF is issuing email reminders to registered members to remember to be prepared for disaster scenarios. There are many things you can do as a bleeding disorder patient to be prepared for catastrophe.

First, know the geography and weather patterns where ever you live. California has many geographical faults that cause earthquakes. The midwest states of Texas, Nebraska and Kansas are dubbed “tornado alley” for their frequent and sometimes devastating tornadoes. The northeast has “nor-easters” every six years or so. And Florida absorbs hurricanes that often originate off the coast or in the Caribbean Sea.

In Boston, where I live, we know that September and October are hurricane season moths. Normally we are lashed with the tail end of a Caribbean-originated hurricane. We once had “The Perfect Storm,” a 1991 hurricane that struck on October 28, and became a massive killer. Damage was most severe in Massachusetts; the story became a movie of the same name, starring George Clooney.

It sounds like common sense, but be prepared if you have a bleeding disorder. The most important thing always is to ensure you have enough factor and ancillaries. When storms hit, you often are not able to travel, and face power outages. Your factor supplier may not be able to bring you factor, and you may not be able to contact them. I think always keeping at least 10-20 doses in your fridge at all times, and plenty of ancillaries. Keep candles and flashlights ready, with fresh batteries.

Know your local emergency numbers, in case you need to be evacuated due to your medical condition. Callers have overwhelmed 911 services, so you may not be able to always reach help when you need it. Charge your cell phone! And charge your laptop and any device that can help keep your cell phone juiced.

As soon as you hear that a storm is developing, even if it is in Florida and you are in Massachusetts, get prepared for a worst-case scenario.  Keep updated at Twitter through @CNNWeather!

Great Book I Just Read
Rabid: A Cultural History of the World’s Most Diabolical Virus by Bill Wasik and Monica Murphy
I love reading medical history books. This book traces the cultural implications of the world’s most insidious virus: rabies.  Nearly 100% fatal once symptoms exhibit, rabies travels directly through the nervous system rather than the more usual route of the bloodstream, allowing it easy access to the brain. Once there, it causes the host victim to be aggressive, biting animal or person who is hydrophobic, “afraid” of water. Tragic and deadly. The most prolific carrier of rabies? Bats.

The authors cover the role rabies has played in myths, legends, folklore and even movies. Rabies may be the origins for the legends of zombies, werewolves, and vampires; the first half of the book covers the history of its reputation (and dwells a bit too long on this, kind of losing its way). The second half is devoted to Louis Pasteur’s development of a rabies vaccine,  the only really effective method of stopping the virus, and is fascinating. Though the book is unevenly written, with gaps in the science, it’s nonetheless a good read and I learned a lot. Three/four stars.

Who are the Future Hemophilia Leaders?

mentor (n.) Look up mentor at Dictionary.com

We often hear the word mentor, but what does it mean? Mentor hails from Greek writing. Mentor was a friend of Odysseus and adviser of Telemachus (son of Odysseus and Penelope) in Homer’s Odyssey. It may also derive from the Greek word  mentos (intent, purpose, spirit, passion) or from the Latin  monitor (one who admonishes), or from the root men (to think).

One of the prime responsibilities of any leader is to mentor and raise up other leaders. It does no good to create an institution, organization, or program and not share the leadership knowledge and managerial information required to run it and carry forward the vision. Leadership is an art, and young people can learn from the current masters how to use the tools and right perspective to create their own masterpieces. Never is this needed more in hemophilia. Our current leaders at NHF are working actively to recruit and teach up and coming leaders.

And industry is too! Here is a unique and brilliant opportunity to particiapte in leadership training. Check it out and apply today! Become a leader, with an aim to helping the future hemophilia community, here in the US and globally!

Program: Bayer Hemophilia Leadership Development Program (BHLDP) Internship

Requirements to Apply: Students enrolled full-time in college who are touched by hemophilia and have a strong interest in and commitment to becoming a future leader in the hemophilia community.

Program Details: Interns will travel to Bayer’s U.S. Headquarters where they will participate in activities that aim to help them grow personally and professionally. Selected interns will:

·       work directly with leaders at Bayer as they participate in formal training on communication skills, effective problem solving, leadership and compliance

·       work with hemophilia organizations in the area to learn about the work done to support the hemophilia community and how business professionals can support these efforts

·       meet with healthcare public policy professionals in Washington D.C. where interns will see first-hand how effective advocacy relations impacts legislative decisions.

This is an this eight-week, paid internship (June – August 2013). For more information and to download an application, visit www.livingbeyondhemophilia.com/intern.

Applications are accepted till February 8, 2013. I’ve known quite a few people who have finished this exceptional training and loved it! It’s helped them get jobs and open many new doors.

Make Time, Make Money, Make a Difference

There’s been a lot of activity lately in the hemophilia community around market research. In fact, I’ve never seen it so busy! We often are hired to help invite bleeding disorder patients and caregivers (those who care for children 17 and under) to participate. So what are they, what do they do and how do they work?

Pharmaceutical companies sometimes have new reconstitution devices that they need to test run before they bring them to market. This makes sense as they can’t invest all the research and money only to find out that consumers don’t like them. Sometimes these are actual clinical studies and sometimes they are market research. These usually require patients and caregivers to be present, so they are held in facilities across the country. I know some that will take place in California  and one in Massachusetts soon.

Sometimes, pharma just want to know what you think: about products, efficiency, treatment. This can be done in person (sometimes they hire market researchers to come to your house!) or on the phone, or increasingly via a website.

They are almost always paid, so you can make good money in a short period of time for participating. The in-person interviews tend to pay the most. Sometimes $150 for a one to two hour interview. But even the on-line or web based ones pay: $50 to even $100 for a 30 minute survey.

The most important thing to know is to protect your privacy. You don’t want to give away identifying information to just anyone. We go to great lengths to protect each of our participant’s privacy. So you get the benefits of making a difference while making some money without worry!

If you want to participate, let us know! We are always looking to include more patients and caregivers in our studies. Just email at laurie@kelleycom.com and we will keep our eyes open for you as a participant!

Great Book I Just Read
The Adventures of Tom Sawyer by Mark Twain

This is a classic, of course, and for great reasons. Witty, wonderful story, and no one sees into the heart and soul of what boys are made of like Twain. Young Tom Sawyer grows up in St. Petersburg, Missouri, where his biggest concerns are how to trade up marbles, avoid school and win the heart of Becky Thatcher. Until he witnesses a murder, in which an innocent man is blamed. Then begins a long journey to maturity that includes buried gold, being trapped in a cave and a final battle with “Injun Joe,” the true murderer. Five/five stars.

Pulse on the Road Stops in Maryland

It was a gorgeous and warm fall day at the Rocky Gap Resort in Flintston, MD where Pulse on the Road (POTR) stopped to give the Hemophilia Foundation of Maryland its insurance seminar. About 28 families with bleeding disorders drove a long way to assemble for the weekend of fun. I had no idea Maryland, a little bit of land on the map, was so expansive and green. Zoraida and I passed farms and rolling hills under blue skies.
Emma Miller, executive director, and her capable team had everything and everyone organized and the weekend unfolded without a hitch!

Laurie Kelley presenting about insurance

    POTR is focused on empowering patients with bleeding disorders to handle insurance issues and learn about the Affordable Care Act. Basically, we’re trying to wake everyone up to some major changes that could be taking place. So much can change, given that we face elections next month, and many states are suing to repeal the ACA.

      With speakers Michelle Rice of NHF, Kelly Fitzgerald of PSI, Tom Larmondra of Baxter Healthcare Corporation, which sponsors POTR, and Kim Winship, LSW at Johns Hopkins University, we were well covered with experts!
Kelly Fitzgerald of PSI, Kim Winship, LSW, Michelle Rice of NHF, Tom Larmondra of Baxter, Laurie Kelley
My short talk was on preparing to choose a healthcare plan, which is important to know as we will soon have “state exchanges,” websites where people can go to select the healthcare plan that us best for them. They will need this tool as the federal government will mandate that everyone have health insurance.
Quickly and simply, I pointed out that it’s good to ask these questions in particular:
 •Is my factor covered?
•Is it covered under the major medical or pharmacy benefit?
•Do I have a choice of more than one pharmacy provider?
•Is my HTC in network?
•Do I need a referral to see a specialist?
•What services require prior authorization?
•Is durable medical equipment covered?

Michelle as always captures everyone’s attention with the NHF Insurance Toolkit. Audience members were asked to crunch numbers and calculate “John Doe’s” choice of an HMO or PPO plan, based on his history of medical usage last year. Very clever and audiences love this! I saw everyone crunching away and asking very good questions.

When asked if everyone learned something new today, every hand went up. A great sign that we made our mark, and hopefully, more people will come away enlightened about how to protect their health care plan, and keep more dollars in their wallets!
Thanks to Emma and her team, and to Baxter Healthcare Corporation for  sponsoring Pulse on the Road

Get to Know Your Ex

The word “exchange” is a funny one. It’s Latin root “ex” means  “out of, away from” like “exodus” or “exorcism.” It also means “without, not including” like ex-dividends. Or “former” as in “ex-husband.”

In health insurance, it means “confusing, convoluted, complicated comparison.”

Of course, I am only half-kidding.

But all the more reason why parents of kids with hemophilia and patients 18 and older need to start reading about and preparing to engage in the coming state insurance exchanges. These are part of the Affordable Care Act, passed by Congress and being enacted in phases with most of the changes beginning in 2014. These include the exchanges, a virtual “marketplace” (basically a web site) where people can shop and compare to buy the healthcare insurance that best suits their needs and budget. Michelle calls them the “Travelocity” of health insurance. 

But with presidential elections looming, and some states suing the government to repeal the ACA, it’s still a Wild West health insurance show out there.

On Saturday, I attended a great presentation by Michelle Rice, director of public policy at NHF about state exchanges. NHF has been holding webinars to train the community’s top advocates. Michelle reported over 85 people attended the first webinar! 

Here are some snippets of what I learned Saturday from Michelle:

1. State exchanges will be like “one stop shopping”—a gateway to coverage for 30  million people who need insurance (and don’t forget the ACA will mandate most everyone have health insurance). 

2. The exchanges allow comparisons on four levels of benefits. They provide federal subsidies for premiums and out-of-pocket (OOP) costs for people below 400% poverty.

3. There’s funding for states to set up IT development, as the websites will need to be sophisticated to help the millions who will be tapping into them. 

4. There are minimum standards for all exchanges to allow easy comparison:

5. 4 coverage tiers based on patient OOP costs; 

6. Essential health benefits (being defined at the state level)

7. There will be “navigators” to help people use the exchange,  multiple ways to enroll in person, online, phone), and one simple application

8. In 2014 all high risk pools will go away and these people will end up on exchange.

 9.   2 states, Louisiana and Arkansas,  won’t operate their own

10. 15 states already established the exchange (which doesn’t mean they can actually do it!)

11. 3 plan to establish (California, Colorado, Maryland)

12. 19 states are studying options 

13. 12 states have taken no significant action

Things are moving quickly, and if you have a chronic disorder like hemophilia, you must have insurance.

Want to learn more? Go the NHF’s website www.hemophilia.org and download slides from the last webinar. Get EXcited about learning more about insurance exchanges and EXcel! The more you learn, the better you will be able to handle the coming changes. 

Good Book I Just Read

Funny Blood: The remarkable
story of my daughter Ros
 by  Juliet Batten, 2011 

This is the very sweet and easy to read story of a young English woman who in 1974 adopts a beautiful baby girl, named Rosamund (“Ros”) who later is diagnosed with von Willebrand disease. The book, while no where near as in-depth and educational as Journey by the Massies, nonetheless paints a picture of the isolation in the 1970s and 80s of having a child with VWD, a disease not written about often or paid much attention to, given the medical demand that hemophilia/HIV provided. Juliet gives a heart-wrenching testimony of her daughter’s suffering and her stoic nature, as she braves so many hospital trips and procedures, and survives her first periods, which entail lengthy hospital stays. Both mother and daughter share strong character, uncomplaining nature and solution-seeking orientation. A wonderful mother and person, Juliet, and husband John, adopt Paul, a needy and active four-year-old, adding more stress and challenges into their lives, which they seem to overcome through the years with persistence and dedication.

The book is well written, interesting and inspirational. Ros succeeds beyond all odds and is now leading a successful life. My friend Richard Atwood, bleeding disorder book critic, writes, “The author did not expect to adopt a child with a major medical problem, but Juliet was capable and her Quaker beliefs provided a peaceful serenity. By necessity, Juliet learned about VWD, became a self-taught expert, and supported others; she also wrote articles for hemophilia and for adoption. Juliet, now retired, writes in her diary as Ros writes a blog; their inspiring story is insightful for living with a bleeding disorder.”

To this I would add that the book’s only flaws are the sometimes misinformation of the medical and scientific side of hemophilia, VWD, plasma and factor concentrates. For example, Juliet writes that 3% levels of factor VIII means severe hemophilia–not true. Also her descriptions of factor concentrates are a bit off-base. The book could have used more stringent medical editing. But if you look to the book for a heart-warming story of a remarkable mother and daughter, and to gain insight on what living with VWD is like in the 1970s and 80s, you will be very rewarded. I especially like how she gave such high marks and kudos to the Haemophilia Society and her HTCs. Juliet sounds like a classy lady! Three out of five stars.

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