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JANUARY

NEWSLETTER Volume 16 Issue 1

Inside This Issue

Scholarship Night 1

Nationals / World Information 2

Fitness Reimbursement Time 4

Open Enrollment Information 5

From Our Pharmacist 4-5

My Life Our Future–Carrier Info 5

Mark Your Calendar 6

Mission Statement

The Hemophilia Outreach Center is dedicated to providing expert, specialized medical care and advocacy for persons with a bleeding disorder. We create and implement programs that

educate, empower and enrich the bleeding disorder community.

If you or a family member will attend a four year college/university or a technical college, but there are concerns about the cost of tuition, don’t miss the Hemophilia Outreach Center’s

“All About Scholarships” Night!

Find out what it takes to submit a great scholarship application, craft an excellent essay, avoid common mistakes, and much more. Ask questions during the Q&A session.

Don’t miss your chance to apply for this impactful college scholarship and attend the “All About Scholarships” night at HOC on February 2nd.

Remember, this event is for high school students and their parents or guardians, as well as current college students and returning adults. Changes will impact all. Be sure to attend!!!

Please RSVP to 920-965-0606 by January 29, 2016

Tuesday, February 2, 2016 - 5:30PM Things have changed!

Be sure to attend whether you are a junior or senior in high school, a college student on scholarship, missed scholarship

opportunities or a returning adult. This evening will be of benefit to all.

Literacy Green Bay will now be administering all Hemophilia Outreach Center Scholarships. This will include any students now on scholarship with HOC. This change was made to help HOC provide more opportunities to students and families.

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NHF's 68th Annual Meeting / World Congress

July 21, 2016 to July 23, 2016

The annual meeting, which is open to anyone who would like to participate, is an opportunity for the

bleeding disorder community to attend educational sessions, network with others and attend social

events. The Hemophilia Outreach Center will sponsor five family scholarships.

If you are interested in attending, you must complete a scholarship application and submit it to

GLHF, 638 North 18th Street, Suite 108, Milwaukee, WI 53233, by the February 15, 2016 deadline.

If selected, the cost of travel, lodging and registration will be provided by the Hemophilia Outreach

Center directly or by reimbursement. Contact Donna at HOC at 920-965-0606 to receive an

application or for more information.

NHF’s 68th Annual Meeting will be held in Orlando, Florida at the beautiful Gaylord Palms Resort

& Convention Center.

This year World Federation of Hemophilia will be having the World Congress in Orlando, FL

following the National meeting. We will be extending our stay in Orlando two extra days for you

to attend the World Congress meeting.

We will be leaving on Wednesday, July 20 and returning on Tuesday, July 26, 2016.

You can read more on each event on their websites: Nationals—www.hemophilia.org ;

World—www.wfh.org.

Don’t miss out on this great opportunity!

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Fitness Reimbursement Program Notice This is a reminder to turn in your proof of payment and usage report for us

to process your fitness reimbursement check of 2015. You should have

your December usage for your membership or fitness class, please mail

or drop off the information listed below. Checks will be mailed shortly

after you submit your data.

Information needed:

Print out of the amount paid and which months you paid for your membership/class

Print out of usage (how many times you visited your facility) for the months

submitted for reimbursement

(Fitness facilities will print this information out when requested.)

If you signed up for a class or classes, we will not need usage, just payment of which class or

classes.

If you have any questions, do not hesitate to call Terry at 920-965-0606!

Reminders from the HOC Business Office…

For many people, the New Year brings changes to their insurance. If your insurance

carrier or plan has changed, make sure to inform the business office.

If you have questions about factor coverage with the new plan, we are happy to look

into this for you as well.

Please call 920-965-0606 if you have questions or concerns.”

Thank you.

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Happy New Year!

I hope your method of welcoming in 2016 went well and as we all try to make resolutions with the New Year, it is the perfect time to revisit that ancient evil: infusion/bleeding logs. *Groan* Wait! Wait!...Before you give up reading, please give me this one article to explain the importance and how I will work hard to help you with them. Medical Necessity?

Let’s start with the payment side of things. We have worked with some of you already with insurances reject-ing payment for your needed factor because it is not medically necessary. To which all of us here go, “Of course it’s medically necessary!” However, what you need to understand is that is not how insurance compa-nies look at that phrase. They translate it as, “Did he/she actually use it?” Which, as we all know, factor is ex-pensive, and if the insurance company is bearing the majority of the cost, I think we can all agree it is a valid question. Infusion/bleeding logs validate that you used your product. Good Stewards

Moving on to our community, this is an awesome bleeding disorder treatment center, and you being part of this group makes it so much better. We are striving in many ways to be the gold standard of treatment cen-ters. Sadly, when the topic of infusion/bleeding logs come up at multi-center meetings and discussions, peo-ple laugh at trying to get patients to submit logs. We are so much better than that! I would love to see the time when so many of you keep and submit logs that the rest of the world looks at us and asks, “How are you do-ing this?” To which I can say, “The relationship we have with our community of patients makes it so.” Benefit to You

While you might not readily see it, the logs also help us from a clinical side see how you are doing in control-ling your bleeding. When we start overlaying the infusion times, half-life, amount used, coverage, weather, and activities you are participating in, it allows us to see if your dosing would need to be adjusted to give you the best control. Working With You

From many conversations with you all, I know you know keeping logs are a good thing and you know you should be doing it. Many of you already do so; Great work! Keep it up! Those of you who want to, but run into challenges, good news, pharmacists are well trained at helping coach patients into taking and recording their medications consistently. I want to work with each of you to have the best outcomes with your factor for your life, and I’m committed to doing so. Since one size does not fit all, here are methods I’m using to help coach you: Forward Looking Calendars

If you are on prophylaxis, it’s easy to mark on a calendar what days you’re going to prophy on. I can easily generate a new calendar at each dispense to help you remember, and mark, your prophy doses. Some like larger calendars some like smaller pocket calendars. Both are great and we can supply either or both. Even if you’re not on prophylaxis, marking the day on the calendar you used an on-demand records your usage.

From Your Pharmacist

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(Continued from previous page) Recording Sheets This is the traditional method to record infusions and bleeds. Some of you like the paper and pen route and that works great. I tried to greatly simplify the form so you can quickly date, indicate if prophy or bleed dose, a stick figure to indicate where the bleed was, and a place to stick the vial stickers or write the amount used. Mobile Apps Some of you use mobile apps to record your infusions and this is great too. At the time of this writing there are at least 9 known apps that help record and track infusions/bleeds. If you want information about them I have them all summarized in a nice spread sheet. Factor Level Chart What I don’t want anyone thinking is when you send us your logs is that they go into some big black hole of non-existence. To help add meaning on your end, I am happy, once I receive your logs, to print out a factor level cal-endar. Using an average half-life, I can show you roughly where your factor level was at anytime during the month. I am happy to do this at any time, just let me know. Thanks for hanging on with me to the end! We all know these are important, and I’m going to continue working with you to make our center one of the best in the world. Now let’s get back to partying like it’s 1999. Brian Barkow, PharmD

MY LIFE OUR FUTURE (MLOF) STUDY

*** Schedule NOW! ***

This Opportunity will be ending soon!

Our Hemophilia Outreach Center (HOC) has been selected as 1 of only 15 national carrier testing pilot sites in the country.

If you or your relatives are interested in carrier testing for hemophilia, please sign up while you are here or call us

today at 920-965-0606.

HEMOPHILIA CARRIER TESTING

AND OPPORTUNITY TO PARTICIPATE IN RESEARCH (GENETIC TESTING FOR POTENTIAL

CARRIERS) IS HERE AT THE HOC

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Mark Your Calendar

Raymond H. Bork, Executive Director

Lisa Palmer, DO

Jodi Ropson, Accounts Payable Specialist

Jen DuMez, Medical Billing Specialist

Emily Christensen, Business Office Assistant

Kay Street, Nursing Coordinator

Jay Charles, Nursing Coordinator

Andrea Miller, Nursing Coordinator

Amy Gelhausen, Nursing Coordinator

Brian Barkow, Pharmacist

Terry Lambert, Program Services

Donna Varney, Activities Coordinator

Barb Varney, Administrative Assistant

Michele Trousil, Medical Receptionist

Hemophilia Outreach Center 2060 Bellevue Street Green Bay, WI 54311-5622 (920) 965-0606 (920) 965-0607 (FAX) (800) 992-6026 (toll free) www.hemophiliaoutreach.org

January 1 Center Closed—Happy New Year!

January 9 Science Exhibit at Shopko Hall

January 25 HOC Board Meeting—5:30PM

February 2 All About Scholarships at HOC—5:30PM

February 15 Nationals Applications due to GLHF

Factor Deliveries

Please remember we need at least one-day notice to deliver factor if possible.