NEHA NewsletterOCTOBER 2016

Our Biggest Year Yet!

NEWENGLANDHEMOPHILIA.ORG

Pages 10–14

NEHA Community,

The New England Hemophilia Association (NEHA) was incorporated as a non-profit on November 1, 1957, in a localized effort to assist and advocate for the bleeding disorders community throughout New England. Over the last 59 years, there have been many changes both in our community, and within this organization. As we enter our milestone 60th year, I am excited to introduce myself to the community as your new Executive Director. I strongly believe that we can continue to make this organization stronger than ever, and continue to meet the evolving needs of our community.

Over the last five months, you have probably noticed some changes already: increased presence on social media, a new platform for our emails, additional programs and services, and a more modern brand. That’s why we’ve waited until now to launch our newsletter with a updated look! Please take a moment to read the articles in this edition that include information about this summer’s factor recall, a recap of our annual walk, the NACCHO conference, and much more! In November and December, we will release two more newsletters that will give a recap of Family Camp, Women’s Retreat, Golf Tournament, BLeaders Teen Retreat, FallFest, and important medical and industry updates.

Thank you for being part of our community. If I haven’t yet met you and your family, I look forward to doing so soon! I hope to see you at FallFest in Burlington!

PAGE 2 // NEHA Newsletter OCTOBER 2016

Executive Director Richard Pezzillo

Program Director Heather Case

Development Associate Elizabeth Laracy

Administrative Assistant Jill DeVirgilio

Walk Manager Sondra Traister

Newsletter Design Michael DeGrandpre

OUR STAFF

a notefrom our

executive director

Chairman and President Pat ManciniSecretary Kim DeAngelisTreasurer Bill McCartney

The NEHA Newsletter is a publication of the New England Hemophilia Association. Electronic (.PDF) versions of this newsletter are available on request. Contact info@newenglandhemophilia.orgto request an electronic version of NEHA News.

Corrections, letters to the editor, submissions, suggestions, and volunteers to help with production are gratefully accepted. Please address all correspondence to the NEHA office, or to info@newenglandhemophilia.org.

The New England Hemophilia Association (NEHA) does not endorse any particular pharmaceutical manufacturer or home care company. The companies whose advertisements are listed herein have purchased this space, and are never provided with members’ names, addresses or any other personal details. Paid advertisements should not be interpreted as a recommendation from NEHA, nor do we accept responsibility for the accuracy of any claims made by paid advertisements. Since we do not engage in the practice of medicine, we always recommend that you consult your physician or a local treatment center before pursuing any course of treatment.

BOARD OFFICERS

Executive Director

PAGE 3 // NEHA Newsletter

On July 25, NEHA sent out an email to all members of our community that Bayer and CSL Behring issued a voluntary recall for certain lot numbers of Kogenate FS and Helixate FS. This recall was expanded to include additional lot numbers for both products. After routine stability testing, declining potency issues were the problem; there is no issue related to contamination of the product.

We are republishing this information in case you still have any affected lot numbers at your home. The below chart was assembled by the Hemophilia Federation of America (HFA) to help you and your family understand when these recalls were issued and which lot numbers are affected. If you have questions, please contact your medical providers.

by Rich Pezzillo, NEHA Executive Director

Bayer: Kogenate FS

Kogenate FS 250 IU Vial Adapter 270RV8X 12/19/2017Kogenate FS 250 IU Vial Adapter 270TN10 06/04/2018Kogenate FS 500 IU Vial Adapter 270R70V 08/27/2017Kogenate FS 500 IU Vial Adapter 270RJ5L 11/23/2017Kogenate FS 500 IU Vial Adapter 270T306 01/29/2018Kogenate FS 500 IU Vial Adapter 270TG7L 03/25/2018Kogenate FS 1000 IU Vial Adapter 270TW0R 07/08/2018Kogenate FS 2000 IU Vial Adapter 270R978 09/17/2017Kogenate FS 2000 IU Vial Adapter 270TN1C 06/06/2018Kogenate FS 2000 IU Vial Adapter 270PWG8 05/08/2017Kogenate FS 3000 IU Vial Adapter 270TTR6 06/22/2018Kogenate FS 3000 IU Bio-Set 270NPV2 08/17/2016

IMPORTANT RECAPof Summer Product Recalls

PRODUCT LOT NUMBER EXPIRATION DATE

• Recall Initiated on July 21, 2016• Recall Extended on August 10, 2016KEY

CSL Behring: Helixate FS

Helixate FS 250 IU 270P892 09/15/2016Helixate FS 250 IU 270PH46 11/18/2016Helixate FS 250 IU 270P4NL 11/22/2016Helixate FS 250 IU 270R5CH 05/29/2017Helixate FS 250 IU 270R0LV 05/29/2017Helixate FS 250 IU 270R7N5 08/13/2017Helixate FS 250 IU 270RV8T 12/19/2017

PRODUCT LOT NUMBER EXPIRATION DATE

OCTOBER 2016

PAGE 4 // NEHA Newsletter

CSL Behring: Helixate FS

Helixate FS 250 IU 270TGX1 02/07/2018Helixate FS 500 IU 270NTPP 09/08/2016Helixate FS 500 IU 270P8V6 11/07/2016Helixate FS 500 IU 270R5K1 08/11/2017Helixate FS 500 IU 270RR6J 08/27/2017Helixate FS 500 IU 270RHG3 11/23/2017Helixate FS 500 IU 270RTPX 12/15/2017Helixate FS 500 IU 270T2T8 01/29/2018Helixate FS 1000 IU 270P9CR 01/09/2017Helixate FS 1000 IU 270RV9C 12/21/2017Helixate FS 1000 IU 270T0R4 01/08/2018Helixate FS 1000 IU 270T508 02/18/2018Helixate FS 1000 IU 270TW0V 07/08/2018Helixate FS 1000 IU 270V5P1 07/08/2018Helixate FS 1000 IU 270NV9G 09/23/2016Helixate FS 2000 IU 270NW81 10/02/2016Helixate FS 2000 IU 270PCPX 02/09/2017Helixate FS 2000 IU 270PP8N 02/09/2017Helixate FS 2000 IU 270R0NN 06/12/2017Helixate FS 2000 IU 270R53J 07/31/2017Helixate FS 2000 IU 270R9HV 09/26/2017Helixate FS 2000 IU 270RR1G 12/07/2017Helixate FS 2000 IU 270T556 03/03/2018Helixate FS 2000 IU 270R979 09/17/2017Helixate FS 2000 IU 270TN1G 06/06/2018Helixate FS 2000 IU 270PWG6 05/08/2017Helixate FS 3000 IU 270NPV1 08/15/2016Helixate FS 3000 IU 270NT1J 08/27/2016Helixate FS 3000 IU 270PJ1G 03/05/2017Helixate FS 3000 IU 270PP5C 04/10/2017Helixate FS 3000 IU 270R83W 09/06/2017Helixate FS 3000 IU 270RXCT 12/30/2017Helixate FS 3000 IU 270R4G4 02/13/2018Helixate FS 3000 IU 270TG53 03/27/2018Helixate FS 3000 IU 270TGWJA 04/09/2018Helixate FS 3000 IU 270TGWJ 04/09/2018Helixate FS 3000 IU 270TTR7 06/22/2018

PRODUCT LOT NUMBER EXPIRATION DATE

IMPORTANT RECAP of Summer Product Recalls, Continued

OCTOBER 2016

PAGE 5 // NEHA Newsletter

Further Information About The Recalls

Per the National Hemophilia Foundation’s (NHF) Medical Advisory issued on August 15, 2016: “The recent voluntary recall announcements made by CSL Behring and Bayer Corporation for their respective recombinant factor VIII products - Helixate FS and Kogenate FS – are not totally unrelated events. Bayer Corporation manufactures Kogenate FS at their facilities in Berkeley, California. Under a long-standing agreement with CSL Behring, Bayer provides Kogenate FS to CSL, which then markets the product under the brand name Helixate FS.”

Reassessing the Recall Notification System

The Patient Notification System (PNS) was created in 1990 in response to the contamination of our blood supply back in the early-to-mid 1980s. Currently, the Plasma Protein Therapeutic Association (PPTA) – an organization for and by the pharmaceutical companies - runs this system. Current policy states that once you enroll in PNS, you should be notified within 24 hours about the latest recall or withdrawal of recombinant and plasma products. Communication about this summer’s recall, however, did not meet these parameters.

The recall that took place this summer was confusing and disorganized. PNS was activated after NHF and HFA put email notices out. Following the first batch of recalls, additional lot numbers were released by CSL Behring. Again, PNS was not activated until after NHF and HFA put a notice out.

NEHA sees value in PNS, but strongly believes that PNS and its oversight should be re-evaluated. As a community, we should be certain we are protected, have clear educational materials about the differences between voluntary and mandatory recalls, and a clear and consistent communication procedure in place for notifications. NEHA will continue to look into the reasons for the breakdown in communication this summer, and, will make it a priority, moving forward, to advocate for a re-evaluation of the disclosure and notification systems.

IMPORTANT RECAP of Summer Product Recalls, Continued

Since NEHA formed in 1957, volunteers have been at the heartbeat of the organization by helping to create fundraisers, programs, events, and services.

To join a committee, please email info@newenglandhemophilia.org

JOIN US

Development CommitteeEmergency Assistance Committee

As we begin to plan for next year’s 60th celebration, we are excited to re-energize our volunteer committees and launch new ones! We are looking for passionate, skilled, reliable, and dedicated individuals to serve on our:

Program Committee60th Year Gala Committee

OCTOBER 2016

Bayer, the Bayer Cross, and KOVALTRY are registered trademarks of Bayer.

© 2016 Bayer. All rights reserved. Printed in USA 03/16 PP-675-US-0143

NOW AVAILABLE

Explore this new treatment at www.KOVALTRY.com

PAGE 7 // NEHA Newsletter OCTOBER 2016

Our son Mason was born in Denver, Colorado in 2013. For the first six months of Mason’s life our biggest first-time parent hurdles were the lack of sleep and trying to figure out why the bassinet came with so many extra parts.

At Mason’s six-month checkup visit with his pediatrician, we asked about some bruising on Mason’s elbows. Our pediatrician calmly and reassuringly ordered some lab tests to check his blood’s clotting ability to make sure there was nothing going on. Little did we know, this was the beginning of an emotional roller coaster for us all. After these tests came back, Mason was diagnosed with severe hemophilia A. This ignited a reaction of mourning.

As parents, we felt like we lost our “perfect” family and mourned the life we expected Mason to have. We had no family history of hemophilia and it wasn’t even a word that we recognized. We were simply in disbelief.

by Michelle and Mark Johannsen

the first six were the

e with

g

amilycognized.

We are now truly fortunate to be part of this strong community who has already done so much for our family.

Within two days of these tests, Mason was having his initial consult with Dr. Marilyn Manco-Johnson, hematologist at the University of Colorado Hemophilia Treatment Center. The team of clinicians at the HTC reassured us that despite hemophilia, we would still have a wonderfully, curious, normal little boy on our hands. Additionally, the social worker at the HTC invited us to a day visit at Colorado Family Camp to meet other families, which proved to be one of the best initiations into the bleeding disorders community. We were around others that got it. We didn’t have to explain anything and were were welcomed into this community with open arms.

Following Mason’s diagnosis, our family moved to Vermont. Mason is now seen at the Dartmouth-Hitchcock Hemophilia Treatment Center (HTC). Dartmouth-Hitchcock has been instrumental in Mason’s prophylactic treatment, port placement, inhibitor discovery, and on-demand treatment when Mason’s curiosity gets the best of him. Dartmouth-Hitchcock HTC provides the care, education and support that we need in our lives. We know there are years of experience at the HTC helping to treat Mason the best way possible and, as parents, that gives us the needed and necessary peace of mind.

Like other two-year olds, Mason is determined. We are excited for him to be active and live a healthy and happy life. We now realize that ‘perfection’ is subjective. Bleeding disorder or not, we are a family and we balance traveling, having fun and everyday life tasks with hemophilia. We make it work. Now that we live in New England, we are so excited to be involved with the NHEA community. This year we attended our first Family Camp and are excited to be on the FallFest Planning committee which is in Burlington, VT!

Mark and Michelle Johanssen live in Vermont and are the proud parents of two-year old, Mason.

IUs23

ADVATE [Antihemophilic Factor (Recombinant)] Important InformationIndicationsADVATE is a medicine used to replace clotting factor (factor VIII or antihemophilic factor) that is missing in people with hemophilia A (also called “classic” hemophilia). ADVATE is used to prevent and control bleeding in adults and children (0-16 years) with hemophilia A. Your healthcare provider may give you ADVATE when you have surgery. ADVATE can reduce the number of bleeding episodes in adults and children (0-16 years) when used regularly (prophylaxis).ADVATE is not used to treat von Willebrand disease.DETAILED IMPORTANT RISK INFORMATIONYou should not use ADVATE if you: • Are allergic to mice or hamsters. • Are allergic to any ingredients in ADVATE. Tell your healthcare provider if you are pregnant or breastfeeding because ADVATE may not be right for you.You should tell your healthcare provider if you: • Have or have had any medical problems. • Take any medicines, including prescription and non-prescription medicines, such as over-the-counter medicines, supplements or

herbal remedies.• Have any allergies, including allergies to mice or hamsters. • Have been told that you have inhibitors to factor VIII (because ADVATE may not work for you).Your body may form inhibitors to factor VIII. An inhibitor is part of the body’s normal defense system. If you form inhibitors, it may stop ADVATE from working properly. Consult with your healthcare provider to make sure you are carefully monitored with blood tests for the development of inhibitors to factor VIII.You can have an allergic reaction to ADVATE.Call your healthcare provider right away and stop treatment if you get a rash or hives, itching, tightness of the throat, chest pain or tightness, difficulty breathing, lightheadedness, dizziness, nausea or fainting.Side effects that have been reported with ADVATE include: cough, headache, joint swelling/aching, sore throat, fever, itching, dizziness, hematoma, abdominal pain, hot flashes, swelling of legs, diarrhea, chills, runny nose/congestion, nausea/vomiting, sweating, and rash.Tell your healthcare provider about any side effects that bother you or do not go away or if your bleeding does not stop after taking ADVATE.You are encouraged to report negative side effects of prescription drugs to the FDA.Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.Please see following page for Brief Summary of ADVATE full Prescribing Information.References: 1. Grillberger L, Kreil TR, Nasr S, Reiter M. Emerging trends in plasma-free manufacturing of recombinant protein therapeutics expressed in mammalian cells. Biotechnol J. 2009;4(2):186-201. 2. Blanchette VS, Shapiro AD, Liesner RJ, et al, for the rAHF-PFM Clinical Study Group. Plasma and albumin-free recombinant factor VIII: pharmacokinetics, efficacy and safety in previously treated pediatric patients. J Thromb Haemost. 2008;6(8):1319-1326. 3. Shapiro AD, Schoenig-Diesing C, Silvati-Fidell L, Wong WY, Romanov V. Integrated analysis of safety data from 12 clinical interventional studies of plasma- and albumin-free recombinant factor VIII (rAHF-PFM) in haemophilia A. Haemophilia. 2015;21(6):791-798. 4. Data on file. 5. Evaluate Ltd. Available WW sales by indication: haemophilia A. July 20, 2015. 6. Data on file.

Baxalta, Advate, Baxject and Baxject III are trademarks of Baxalta Incorporated. USBS/34/16-0023a(1) Baxter is a registered trademark of Baxter International Inc.

OVER 12 YEARS OF PROVEN EXPERIENCE WITH ADVATE FOR CHILDREN LIKE YOURS1-3

†Based on units sold as of 2015.

VISIT US AT

PROVEN RECORD

Reconstitute ADVATE in about half the time with the BAXJECT III Reconstitution System‡6

distributed worldwide4,5

MOST WIDELY USED†

Clinically effective and demonstrated safety profile in pediatric previously treated patients (PTPs)*2,3

DESIGNED FOR YOUR LIFE

More than

Visit our Web site for the Hispanic community at www.advate.com/es, and connect with a Baxalta bilingual health educator today!

* 53 pediatric PTPs were studied in a multicenter, open-label, prospective study that evaluated the pharmacokinetics, efficacy, and safety of ADVATE. Patients with severe or moderately severe hemophilia A (baseline FVIII ≤2%) were <6 years of age at enrollment and had ≥50 prior exposure days (EDs) to other FVIII concentrates. Patients received either standard long-term prophylaxis (25-50 IU/kg-1, 3-4 times per week), modified long-term prophylaxis, or on-demand treatment for ≥50 EDs or 6 months.2

‡Compared with the BAXJECT II needleless transfer device. Actual patient with hemophilia A. Individual results may vary.

UNLOCKING SELF-POTENTIALYOUR

What should I tell my healthcare provider before I use ADVATE?

You should tell your healthcare provider if you:

• Have or have had any medical problems.

• Take any medicines, including prescription and non-prescription medicines, such as over-the-counter medicines, supplements or herbal remedies.

• Have any allergies, including allergies to mice or hamsters.

• Are breastfeeding. It is not known if ADVATE passes into your milk and if it can harm your baby.

• Are pregnant or planning to become pregnant. It is not known if ADVATE may harm your unborn baby.

• Have been told that you have inhibitors to factor VIII (because ADVATE may not work for you).

What are the possible side effects of ADVATE?

You can have an allergic reaction to ADVATE.

Call your healthcare provider right away and stop treatment if you get a rash or hives, itching, tightness of the throat, chest pain or tightness, difficulty breathing, lightheadedness, dizziness, nausea or fainting.

Side effects that have been reported with ADVATE include:

cough headache joint swelling/aching

sore throat fever itching

dizziness hematoma abdominal pain

hot flashes swelling of legs diarrhea

chills runny nose/congestion nausea/vomiting

sweating rash

Tell your healthcare provider about any side effects that bother you or do not go away.

These are not all the possible side effects with ADVATE. You can ask your healthcare provider for information that is written for healthcare professionals.

What else should I know about ADVATE and Hemophilia A?

Your body may form inhibitors to factor VIII. An inhibitor is part of the body’s normal defense system. If you form inhibitors, it may stop ADVATE from working properly. Consult with your healthcare provider to make sure you are carefully monitored with blood tests for the development of inhibitors to factor VIII.

Medicines are sometimes prescribed for purposes other than those listed here. Do not use ADVATE for a condition for which it is not prescribed. Do not share ADVATE with other people, even if they have the same symptoms that you have.

The risk information provided here is not comprehensive. To learn more, talk with your health care provider or pharmacist about ADVATE. The FDA approved product labeling can be found at www.ADVATE.com or 1-888-4-ADVATE.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

Baxalta Incorporated Westlake Village, CA 91362 USA

U.S. License No. 140

Issued: 06/2016

USBS/34/15-0077(1)

What is the most important information I need to know about ADVATE?

Do not attempt to do an infusion to yourself unless you have been taught how by your healthcare provider or hemophilia center.

You must carefully follow your healthcare provider’s instructions regarding the dose and schedule for infusing ADVATE so that your treatment will work best for you.

What is ADVATE?

ADVATE is a medicine used to replace clotting factor (factor VIII or antihemophilic factor) that is missing in people with hemophilia A (also called “classic” hemophilia). The product does not contain plasma or albumin. Hemophilia A is an inherited bleeding disorder that prevents blood from clotting normally.

ADVATE is used to prevent and control bleeding in adults and children (0-16 years) with hemophilia A.

Your healthcare provider may give you ADVATE when you have surgery. ADVATE can reduce the number of bleeding episodes in adults and children (0-16 years) when used regularly (prophylaxis).

ADVATE is not used to treat von Willebrand disease.

Who should not use ADVATE?

You should not use ADVATE if you:

• Are allergic to mice or hamsters.

• Are allergic to any ingredients in ADVATE.

Tell your healthcare provider if you are pregnant or breastfeeding because ADVATE may not be right for you.

How should I use ADVATE?

ADVATE is given directly into the bloodstream.

You may infuse ADVATE at a hemophilia treatment center, at your healthcare provider’s office or in your home. You should be trained on how to do infusions by your healthcare provider or hemophilia treatment center. Many people with hemophilia A learn to infuse their ADVATE by themselves or with the help of a family member.

Your healthcare provider will tell you how much ADVATE to use based on your weight, the severity of your hemophilia A, and where you are bleeding.

You may have to have blood tests done after getting ADVATE to be sure that your blood level of factor VIII is high enough to clot your blood.

Call your healthcare provider right away if your bleeding does not stop after taking ADVATE.

Important facts aboutADVATE [Antihemophilic Factor (Recombinant)]

This leaflet summarizes important information about ADVATE. Please read it carefully before using this medicine. This information does not take the place of talking with your healthcare provider, and it does not include all of the important information about ADVATE. If you have any questions after reading this, ask your healthcare provider.

SATURDAY, JUNE 10, 2016PROWSE FARM, MASSACHUSETTS

PAGE 10 // NEHA Newsletter OCTOBER 2016

PAGE 11 // NEHA Newsletter OCTOBER 2016

With your help, we raised an incredible $132,000 for our programs and services! Every single penny will go back to our programs and services that serve the bleeding disorders community in MA, RI, CT, NH, VT, and ME. For example, for a family of four to attend Family Camp each year, it costs about $1,000. NEHA is proud to absorb 93% of that cost so that it stays affordable for all families. This walk helps us to do this year-after-year for new and returning families!

A special thanks to all of our participants, volunteers, and sponsors for their dedication and efforts. A big shout out to Need to Lead, a non-profit team of volunteers on a mission to motivate young students to become actively involved in charitable initiatives within their communities. We absolutely couldn’t do this without you!

On Saturday, June 11, 2016, over 650 members of the New England bleeding disorders community gathered at the historic Prowse Farm in Canton, MA for the New England Hemophilia Association’s 7th Annual Walk!

involved in charitable initiatives within their comm

save the dateNEHA’s 8th Annual WalkProwse Farm, Canton, MA Saturday, June 10, 2017

2016 fast facts• 650+ participants • $132,000 raised • $785,000+ raised since NEHA’s first walk in 2010

PAGE 12 // NEHA Newsletter OCTOBER 2016

why we walk...This was our first walk and NEHA event. We came to support my daughter, Jaylyn, who has severe Type 2 von Willebrand Disease.

• Rachael, Team Jay Jay Dolls, Tyngsboro, MA

We walked in memory of my dad and in support of my son who is a hero in my eyes. He is stronger than I could ever be!

• Kristen, Team Declan’s Disciples, Stoughton, MA

We walked to remember Billy Rotenberry, who had hemophilia. Born in Rhode Island, Billy passed away 25 years ago today from HIV that he contracted from contaminated blood products in the 1980’s. Although we never met, his legacy continues to represent the spirit of the bleeding disorders community.

• Richard & Michael, Providence, RI

Our family and friends walked for our hero, Alexander the Great, to show him how hemophilia can bring people together and that achieving greatness is attainable no matter what lies ahead of him.

• Diane, Team The Missing Factor, Methuen, MA

Beyond the fun, awards, and BBQ, this was really about showing my son Mason that he has more than just our family behind him...he has a community who will grow with him!

• Michelle, Team Little Bruisers, Quechee, VT

This was a true community experience with so many amazing people, perfect weather, good food, and our daughters absolutely loved the baby animals in the petting zoo! This was all for an amazing cause that we were proud to support!

• Mark & Sasha, Team Straight Outta Clotting Proteins, Endfield, CT

We come and walk each year for my son, Tucker, to show him that he is loved regardless of his bleeding disorder. We want him to see that having hemophilia isn’t anything to be ashamed about, and by walking he can help create awareness and make a difference in our community’s future. The walk is also a great way to show him that he’s not alone!

• Brenda, Tuck’s Team, Concord, NH

There are so many reasons our community members and peers come together to walk each year. A few walkers from ths year shared with us why they chose to participate in this important event.

PAGE 13 // NEHA Newsletter OCTOBER 2016ewsletterPAGE 13 // NEHA N l tt OCOCTOTOTOBEEBEBERRRR 2020202020161616161616

1st Place: Team LJ Wickham raised $9,4302nd Place: Hemotional Outburst raised $5,2303rd Place: J Walkers raised $3,868

Family Teams for Most Funds Raised

1st Place: Biogen raised $9,3002nd Place: Pfizer raised $6,6333rd Place: Alnylam raised $1,125

Corporate Teams for Most Funds Raised

1st Place: 29 walkers with Declan’s Disciples 2nd Place: 28 wakers with Missing Factor3rd Place: 16 walkers with Chris’ Crew

Family Teams With Most Walkers

1st Place: 80 people from Biogen2nd Place: 54 people from Alnylam3rd Place: 25 people from Pfizer

Corporate Teams With Most Walkers

1st Place: Tracy Wickham raised $8,0402nd Place: Alex Bruno raised $3,9753rd Place: Mark Borreliz raised $3,765

Individuals Who Raised the Most Funds

1st Place: Team Funny Blood2nd Place: The Little Bruisers3rd Place: JayJay’s Dolls

Family Teams for Most Creative T-Shirts

and thewinnersare...

Note: Winners as of June 4, 2016

PAGE 14 // NEHA Newsletter OCTOBER 2016

Thank you to both our local sponsors and the national sponsors who made this walk a success!

Presenting Sponsor:Alnylam Pharmaceuticals

Gold Sponsors:AHF, CSL Behring, CVS Caremark, Aptevo, Novo Nordisk

Silver Sponsor:Genetech

Bronze Sponsors: All-Care Pharmacy, Boston Hemophilia Center, Octapharma

BBQ Lunch Sponsor: Bayer Healthcare

our walk sponsors...Local Sponsors

Presenting Sponsor: Baxalta/Shire

Pacesetter Plus Sponsor: Novo Nordisk

Gold Sponsor:Bayer Healthcare, Grifols, Biogen, Pfizer, Accredo, Option Care, Octapharma

National Sponsors

on Care, Octapharma

Extended protection* from bleeds

Indications and Important Safety Information

Indications

Important Safety Information

Please see Brief Summary of full Prescribing Information on the next page. This information is not intended to replace discussions with your healthcare provider.

Casey TM

Learn more at www.alprolix.com/findyourfit

The recommended starting prophy regimens are either 50 IU/kg

once weekly, or 100 IU/kg once every 10 days. Dosing regimen

can be adjusted based on individual response.

Children under 12 years of age may have higher Factor IX body

weight-adjusted clearance, shorter half-life, and lower recovery.

Higher dose per kilogram body weight or more frequent dosing

may be needed in these children.

Casey, on ALPROLIX

“AFTER WORKING WITH MY DOCTOR AND BASED ON MY RESPONSE, I NOW INFUSE PROPHYLACTICALLY

EVERY 14 DAYS.”

ALPROLIX [Coagulation Factor IX (Recombinant), Fc Fusion Protein], Lyophilized Powder for Solution For Intravenous Injection.

FDA Approved Patient Information

ALPROLIX® /all' pro liks /[Coagulation Factor IX (Recombinant),

Fc Fusion Protein]

What is ALPROLIX?

Who should not use ALPROLIX?

What should I tell my healthcare provider before using ALPROLIX?

How should I use ALPROLIX?

See the Instructions for UseInstructions for Use

What are the possible side effects of ALPROLIX?

How should I store ALPROLIX?

What else should I know about ALPROLIX?

PAGE 17 // NEHA Newsletter OCTOBER 2016

Leaders from the New England Hemophilia Association (NEHA)’s Family Camp attend the North American Camping Conference of Hemophilia Organizations (NACCHO) each year in Phoenix, AZ. NACCHO was created for counselors, camp directors, medical staff, fundraisers, activities leaders, and camp committee members responsible for planning, organizing, and operating bleeding disorder summer camps.

by Heather Case, M.Ed., NEHA Program Director

NACCHO has several educational tracks for attendees to participate in and bring back to their local communities:

This year, NEHA was proud to send Family Camp counselors Dean Vieira, Leland Smith, and Alex Keiver to NACCHO. In addition, Family Camp volunteer and Child Care coordinator, Amber Dawn Doiron presented during the conference about early childhood education at summer camps. Amber’s presentation was the first time a representative from NEHA ever presented at NACCHO!

We asked these young leaders what Family Camp means to them and what they took most from attending this conference:

• Dean Vieira, von Willebrand Disease (vWD), Massachusetts

Family Camp is my second family (which on more than one occasion I’ve liked more than my actual family). So many from camp were there for me when I was a kid and now I can be there for them as an adult. It’s a powerful tool in shaping the lives of kids. It shaped mine. I’m humbled and honored to be a part of the process.

BUILDINGCOMMUNITY

A STRONGER FAMILY CAMP

• Administration Track: Information on how to budget, market, promote, insure and manage camp.• Campers and Parent Track: Sessions relating to child/youth development, contemporary parenting issues, how to work with children with behavioral challenges, sending children home, developmental or practical issues related to bleeding disorders, and enforcing camp rules.• Programs and Activities Track: Helpful information and best practices related to improving and expanding current programing, establishing new programs, expanding instruction in sports, arts, adventure and waterfront operation.• Staff and Leadership Track: Best practices to staff hiring, training and management, ethics, community building, and establishing or changing camp culture.• Medical Services Track: All sessions related to the providing of medical and social services at camp.

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PAGE 18 // NEHA Newsletter OCTOBER 2016

• Leland Smith, hemophilia, Massachusetts

I believe camp has three priorities: to educate kids and families about bleeding disorders like von Willebrand Disease (vWD) and hemophilia, to create a safe and embracing atmosphere that promotes personal growth, and to help foster interpersonal relationships between members of the community. There is always room to improve on how we do this and I was excited to go to NACCHO to learn more skills that I brought back to camp this year.

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• Alex Keiver, friend of the bleeding disorders community, Massachusetts

I do not have a bleeding disorder and no one in my family does either. I first came to NEHA family camp because it was an opportunity to see my closest childhood friend who has hemophilia. However, it is much more than this now. Yes, I enjoy seeing my friend every summer for a week, but I also enjoy seeing everyone at camp. Camp is much more than a camp to me; it is my second family. No matter how long it has been since seeing someone, whenever I show up to camp, everyone is as friendly and caring as ever. Seeing my fellow counselors and staff is amazing every summer, but what really is most amazing is seeing the campers. There is nothing more rewarding than seeing your campers grow up over the years and knowing you helped to some degree. Overall, NEHA Family Camp to me is a tight-knit family, bound by compassion. I was proud to represent NEHA during a national camp conference and will continue to bring a lot back to our local community.

I notin myonEHAto

Left to right: Dean, Leland, Heather, Dawn, and Alex at the NACCHO Conference in Arizona.

Building A Stronger Family Camp Community, Continued

Our November newsletter will have a recap from this year’s NEHA Jedi Academy Family Camp!

David, 22 years old, lives with hemophilia A.

Novoeight® is ready when you are

Because you seek out new experiences, you need a treatment that is ready when you are. Designed to fit into your world, Novoeight® can be stored at up to 86ºF for 12 months and up to 4 hours after being mixed.

Novo Nordisk Inc., 800 Scudders Mill Road, Plainsboro, New Jersey 08536 U.S.A.

Novoeight® is a registered trademark of Novo Nordisk Health Care AG. © 2015 Novo Nordisk All rights reserved. 1114-00024065-4 April 2015

Now available

An injectable medicine used to control and prevent bleeding in people with hemophilia A

86 F˚ FOR 12 MONTHSHighest storage temperature for the longest timea

UP TO

Visit Novoeight.com to learn about additional features and see how Novoeight® can fit into your world.

Indications and UsageNovoeight® (Antihemophilic Factor [Recombinant]) is an injectable medicine used to control and prevent bleeding in people with hemophilia A. Your healthcare provider may give you Novoeight® when you have surgery.

Novoeight® is not used to treat von Willebrand Disease.

Important Safety InformationYou should not use Novoeight® if you are allergic to factor VIII or any of the other ingredients of Novoeight® or if you are allergic to hamster proteins.

Call your healthcare provider right away and stop treatment if you get any of the following signs of an allergic reaction: rashes or hives, difficulty breathing or swallowing, tightness of the chest, swelling of the lips and tongue, light-headedness, dizziness or loss of consciousness, pale and cold skin, fast heartbeat, or red or swollen face or hands.

Before taking Novoeight®, you should tell your healthcare provider if you have or have had any medical conditions, take any medicines (including non-prescription medicines and dietary supplements), are nursing, pregnant or planning to become pregnant, or have been told that you have inhibitors to factor VIII.

Your body can make antibodies called “inhibitors” against Novoeight®, which may stop Novoeight® from working properly. Call your healthcare provider right away if your bleeding does not stop after taking Novoeight®.

Common side effects of Novoeight® include swelling or itching at the location of injection, changes in liver tests, and fever.

Please see brief summary of Prescribing Information on following page.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

8Terms and conditions apply.

Please see Prescribing Information for complete storage instructions.aCompared with other recombinant factor VIII products.

Patient Product Information Novoeight® (NŌ-vō-eyt) Antihemophilic Factor (Recombinant)Rx Only This is a BRIEF SUMMARY of important information about Novoeight®. Read the Patient Product Information and the Instructions For Use that come with Novoeight® before you start taking this medicine and each time you get a refill. There may be new information.This Patient Product Information does not take the place of talking with your healthcare provider about your medical condition or treatment. If you have questions about Novoeight® after reading this information, ask your healthcare provider.

What is the most important information I need to know about Novoeight®?Do not attempt to do an infusion yourself unless you have been taught how by your healthcare provider or hemophilia center.You must carefully follow your healthcare provider’s instructions regarding the dose and schedule for infusing Novoeight® so that your treatment will work best for you.

What is Novoeight®?Novoeight® is an injectable medicine used to replace clotting factor VIII that is missing in patients with hemophilia A. Hemophilia A is an inherited bleeding disorder that prevents blood from clotting normally.Novoeight® is used to control and prevent bleeding in people with hemophilia A.Your healthcare provider may give you Novoeight® when you have surgery.Novoeight® is not used to treat von Willebrand Disease.

Who should not use Novoeight®?You should not use Novoeight® if you• are allergic to factor VIII or any of the other ingredients of Novoeight• if you are allergic to hamster proteins

Tell your healthcare provider if you are pregnant or nursing because Novoeight® might not be right for you.

What should I tell my healthcare provider before I use Novoeight®?You should tell your healthcare provider if you• Have or have had any medical conditions.• Take any medicines, including non-prescription medicines and dietary

supplements.• Are nursing.• Are pregnant or planning to become pregnant.• Have been told that you have inhibitors to factor VIII.

How should I use Novoeight®?Treatment with Novoeight® should be started by a healthcare provider who is experienced in the care of patients with hemophilia A.Novoeight® is given as an injection into the vein.You may infuse Novoeight® at a hemophilia treatment center, at your healthcare provider’s office or in your home. You should be trained on how to do infusions by your hemophilia treatment center or healthcare provider. Many people with hemophilia A learn to infuse the medicine by themselves or with the help of a family member.Your healthcare provider will tell you how much Novoeight® to use based on your weight, the severity of your hemophilia A, and where you are bleeding.You may need to have blood tests done after getting Novoeight® to be sure that your blood level of factor VIII is high enough to clot your blood. This is particularly important if you are having major surgery. Your healthcare provider will calculate your dose of Novoeight® (in international units, IU) depending on your condition and body weight.Call your healthcare provider right away if your bleeding does not stop after taking Novoeight®.Development of factor VIII inhibitorsYour body can also make antibodies called “inhibitors” against Novoeight®, which may stop Novoeight® from working properly.If your bleeding is not adequately controlled, it could be due to the development of factor VIII inhibitors. This should be checked by your healthcare provider. You might need a higher dose of Novoeight® or even a different product to control bleeding. Do not increase the total dose of Novoeight® to control your bleeding without consulting your healthcare provider.Use in childrenNovoeight® can be used in children. Your healthcare provider will decide the dose of Novoeight® you will receive.

If you forget to use Novoeight®

Do not inject a double dose to make up for a forgotten dose. Proceed with the next injections as scheduled and continue as advised by your healthcare provider.If you stop using Novoeight®

If you stop using Novoeight® you are not protected against bleeding. Do not stop using Novoeight® without consulting your healthcare provider.If you have any further questions on the use of this product, ask your healthcare provider.

What if I take too much Novoeight®?Always take Novoeight® exactly as your healthcare provider has told you. You should check with your healthcare provider if you are not sure. If you inject more Novoeight® than recommended, tell your healthcare provider as soon as possible.

What are the possible side effects of Novoeight®?Common Side Effects Include:• swelling or itching at the location of injection• changes in liver tests• fever

Other Possible Side Effects:You could have an allergic reaction to coagulation factor VIII products. Call your healthcare provider right away and stop treatment if you get any of the following signs of an allergic reaction:• rashes including hives• difficulty breathing, shortness of breath or wheezing• tightness of the chest or throat, difficulty swallowing• swelling of the lips and tongue• light-headedness, dizziness or loss of consciousness• pale and cold skin, fast heart beat which may be signs of low blood pressure• red or swollen face or hands

These are not all of the possible side effects from Novoeight®. Ask your healthcare provider for more information. You are encouraged to report side effects to FDA at 1-800-FDA-1088.Tell your healthcare provider about any side effect that bothers you or that does not go away.

How should I store Novoeight®?Prior to Reconstitution:Store in original package in order to protect from light. Do not freeze Novoeight®.Novoeight® vials can be stored in the refrigerator (36–46°F [2°C–8°C]) for up to 30 months or up to the expiration date, or at room temperature (up to 86°F [30°C]) for a single period not exceeding 12 months.If you choose to store Novoeight® at room temperature:• Note the date that the product is removed from refrigeration on the box.• The total time of storage at room temperature should not exceed 12 months. Do

not return the product to the refrigerator.• Do not use after 12 months from this date or the expiration date listed on the vial,

whichever is earlier.Do not use this medicine after the expiration date which is on the outer carton and the vial.The expiration date refers to the last day of that month.After Reconstitution (mixing the dry powder in the vial with the diluent):The reconstituted Novoeight® should appear clear to slightly unclear without particles.The reconstituted Novoeight® should be used immediately.If you cannot use the Novoeight® immediately after it is mixed, it should be used within 4 hours when stored at ≤ 86°F (30°C). Store the reconstituted product in the vial.Keep this medicine out of the sight and out of reach of children.

What else should I know about Novoeight® and hemophilia A?Medicines are sometimes prescribed for purposes other than those listed here. Do not use Novoeight® for a condition for which it is not prescribed. Do not share Novoeight® with other people, even if they have the same symptoms that you have. For more information about Novoeight®, please call Novo Nordisk at 1-844-30-EIGHT.More detailed information is available upon request. Available by prescription only.

Revised: 09/2014Novoeight® is a trademark of Novo Nordisk A/S.For information about Novoeight® contact: Novo Nordisk Inc. 800 Scudders Mill Road Plainsboro, NJ 08536, USAManufactured by: Novo Nordisk A/S DK-2880 Bagsvaerd, Denmark© 2014 Novo Nordisk 1214-00024657-1 12/14

PAGE 21 // NEHA Newsletter OCTOBER 2016

Your Voice Matters!Project CALLS is the latest way that HFA is listening to our community’s needs. HFA has been able to turn the results of their CHOICE survey into action with Project RED, and the Bleeders’ Bill of Rights. Project CALLS is the next step in helping individuals with bleeding disorders to receive the best care possible.

Share your story through this very important initiative and be a part of a community that cares!

Across the country, the Hemophilia Federation of America (HFA) has heard of many cases of patients and their families facing new limitations and restrictions from their insurance services. Prior authorization, step therapy policies, and restrictions on which specialty pharmacy or pharmacy benefits manager (PBM) may be used are examples of a few.

HFA speaks with individuals weekly who struggle to obtain needed exceptions to rules and policies from their service providers. Receiving temporary exceptions may serve that particular family or situation, but, exceptions can be reversed without input or prior notice, and may only last a short time, needing constant renewal. Policy or rule changes provide more overall protection for the entire community. As a community advocacy organization, HFA recognizes the need to obtain policy changes for families with bleeding disorders. To do so, HFA needs to present a unified request with multiple examples of how a current rule or policy is not effective or may possibly harm patients.

To address these concerns, HFA has developed Project CALLS [Creating Alternatives to Limiting and Lacking Services], a patient-centered initiative which invites members of the community to share their individual stories about insurance issues to help the entire bleeding disorders community. Project CALLS is flexible in accommodating those who wish to participate. Depending on your preference, participants may speak privately with a trained member of the HFA staff or complete an online form regarding their insurance concerns.

Through the gathering of these stories, HFA will identify trends and collate data. The data will be used to build a comprehensive case for change. We will then work with other advocates, insurance companies, pharmacies and other providers to request identified needed changes. The information may also be used to educate insurers, legislators, and human resource departments about more comprehensive, cost-effective ways to provide quality care for individuals with bleeding disorders.

by Katie Verb, Government Relations and Policy Director, HFA

Contact Project CALLS if you have been:

• Denied services• Have received an exception• Been forced by an insurance company to “fail” on one product before being allowed to use the product of your choice• Mandated to use a pharmacy that is not meeting your needs• Forced to go through a lengthy pre-/ prior-authorization process

PROJECT C.A.L.L.S.NEEDS YOUR HELP!

To participate in Project CALLS, visit the HFA website www.hemophiliafed.org/project-calls,or by calling 800-230-9797.

PAGE 22 // NEHA Newsletter OCTOBER 2016

Connecting Couples in the Bleeding Disorders CommunityOur annual Couples Retreat took place May 21–22 in Hyannis, MA. The event included a full-day workshop led by professional facilitator, James Stroker, a New Jersey high school teacher, and his daughter, Ali Stroker, the first actress in a wheelchair on Broadway! James and Ali provided an interactive workshop that inspired and motivated the 20 couples in the room. All attendees enjoyed an evening dinner and a one-night stay at the Cape Codder Resort. Thank you to Inalex Communications for making this retreat possible each year!

A snapshot of what’s going on around the NEHA community. We recap some of our past programs, spotlight some upcoming events, share some exciting collaborations, and remind you to save-the-date for some great happenings!

IN CASE YOU MISSED IT!y

Bringing Together Dads and Adult MenOur Dads in Action and Blood Brotherhood joined forces on June 26 at the F1 Boston Kart Racing in Braintree, MA to provide an educational and fun event where dads and adult men from around New England were able to connect with each other while having some “healthy” racing competition! Both Dads in Action and Blood Brotherhood will be hosting regular events throughout the year. Stay tuned, the next event will be scheduled for January.

g p y

Congratulations to the winners of the NEHA F1 Racing Event:

1st Place: Dennis Mackey | 2nd Place: Chris Smith | 3rd Place: Paul Firth

Thank you Hemophilia Federation of America for making this possible!

NEHA’s Annual Holiday PartyJoin us for our Annual Holiday Party on Sunday, December 4. We are excited to announce the 2016 location has changed to Old Sturbridge Village, MA! This year, you will enjoy a holiday themed lunch and a visit with Santa Claus from 1-3 PM. Beginning at 3 PM, all registered guests are provided passes to walk around Old Sturbridge Village which is beautifully lit for the holidays. Holiday activities at the Village include gingerbread making, petting zoos, live carolers, and sleigh rides (weather permitting)!

This event is free for all NEHA members and only $10 a person for any non-member. To register, go to NEHA’s website: newenglandhemophilia.org

SAVE THE DATE!

NEHA HAPPENINGS

PAGE 23 // NEHA Newsletter OCTOBER 2016

Teen Transition Ignition ProgramWe are excited to build on our August BLeaders Retreat by offering another program for teens (ages 13-18 years old) in the bleeding disorders community and their parents. Join us on Sunday, November 13, from 12–4PM, for a Transition Ignition educational program and an opportunity to experience Escape Games Worcester!

Learn more and register for the event here: www.NEHAteen.eventbrite.com

About Transition Ignition: Transition Ignition is a fun and interactive program that guides teens and their parents in their effort to transition more responsibility for bleeding disorder care from parents to teen. Every child grows up, every child leaves home, and every child needs to know how to manage their own health. It’s never too soon to start.

This program is generously supported by Bayer Healthcare and AHF/Diplomat.

REGISTER NOW!

We are excited to announce new partnerships with Johnson & Wales University and Whole Foods Market!

COLLABORATING WITH LOCAL ORGANIZATIONS

Johnson & Wales University (JWU): NEHA was recently chosen through a competitive process as the only 2016 JWU Community/Industry Partner Project recipient! Over the next six months, the students in the senior graphic design class at JWU in Providence, RI, will work with us to build a new user-friendly website, info-graphics, and updated awareness materials at no cost. We are grateful to JWU for this incredible opportunity!

Whole Foods Market: On Wednesday, August 31, we hosted our inaugural cooking class for couples in the New England bleeding disorders community at the Whole Foods Market in Dedham, MA; the largest Whole Foods Market in New England! Every three months, we will offer a free cooking class for: adult men and women, grandparents, teens, and couples.

Next Cooking ClassTo recognize November as Caregivers Awareness Month, the next class will be on Wednesday, November 9, at 5:30PM, for moms, dads, grandparents and other caregivers. Register for this event by calling the NEHA office at 781-326-7645 or by emailinginfo@newenglandhemophilia.org.

NEHA HAPPENINGS

PAGE 24 // NEHA Newsletter

For the first time in over ten years, we are excited to host FallFest in beautiful Burlington, VT! Over 300 members of the New England bleeding disorders community, our industry partners, speakers, and volun-teers are registered; making this our largest meeting to date. Thank you to the University of Vermont and Dartmouth Hitchcock Hemophilia Treatment Centers (HTCs) for partnering with us for this event! Regis-tration has closed and there is no on-site registration.

EDUCATIONAL PROGRAMING

This meeting also marks the first time FallFest will be a two-day event providing educational programming for adults, teenagers (13-18 years old), youth (6–12 years old), and childcare (newborns–5 years old). Earlier this year we offered a needs-assessment survey to the community. As a result, all educational ses-sions will speak to the needs identified by the survey.

FINANCIAL ASSISTANCE

We are proud to offer a financial assistance program called “100 for 100.” This program is for any NEHA member in need of financial assistance traveling more than 100 miles roundtrip to SpringFest and FallFest only. After the meeting, simply send in proof of the 100 miles driven and a check for $100 will be mailed to you after the event. This can be used for hotel room(s), parking, gas, etc.

NEHA HAPPENINGS

PAGE 25 // NEHA Newsletter OCTOBER 2016

So, you have worked closely with your school’s team to develop a carefully crafted 504 accommodation plan for your child (and if you haven’t, do so!). The accommodations seem reasonable and the school has agreed that it is their responsibility to make sure it is followed across all content areas, including specials. Everything seems to be going fine then- ROAD BLOCK - your child is struggling.

by Janet Brewer, M.ED, Comprehensive Health Education Services, LLC

Some potential issues:

• The substitute doesn’t let your child go to the nurse if s/he is in pain resulting in a bleed that takes longer to recover.• Your child is told they “can’t go out for recess because it is too dangerous.”• Your child’s class is going on a field trip and your child is told s/he can’t go because “they can’t provide a nurse, or the building isn’t wheelchair accessible, or it might be too risky.”• The second semester teacher won’t provide your child with an extra book saying, “there aren’t enough.”

The list of reasons, aka “excuses”, could be endless! By now, you probably get the picture and most likely have dealt with at least one these scenarios or a more severe scenario! (I have heard many of your stories and they make me shudder). Each of these examples is a violation of your child’s civil rights. Yes, civil rights. Remember, a 504 accommodation plan is developed under the Americans with Disabilities Act, a federal law designed to remove barriers, prevent discrimination and to provide your child the same experiences as every other child in their classroom, school or school district.

Section 504 of the Rehabilitation Act of 1973

This Act’s focus is on non-discrimination. It maintains that, “no otherwise qualified individual with a disability will be excluded from participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance.”

In addition, the Office for Civil Rights also has responsibilities under Title II of the Americans with Disabilities Act (http:// www2.ed.gov/about/offices/list/ocr/disabilityoverview.html) of 1990 (ADA) that prohibits discrimination based on disability in any program or activity operated by recipients of federal funds and prohibits discrimination based on disability by public entities, regardless of whether they receive federal financial assistance. This may have the potential to apply to children who are in private school (http://www.ada.gov/t2hlt95.htm).

Americans with Disabilities Act 1990

ADA is an extension of Section 504. It provides for the elimination of barriers related to accessibility for the disabled to buildings, transportation, and communication. Both 504 and ADA provide related services and accommodations to qualified individuals with a diagnosed disability through a 504 plan. Its intent is to provide access or remove barriers to participation. It provides students with the same rights and services as their “NON Disabled Peers.”

PAGE 26 // NEHA Newsletter OCTOBER 2016

What does this look like?

If your child’s friend Sean can go on a field trip or play on the playground, it is the school’s FEDERAL obligation to provide the related services and accommodations so that your child can participate in the same activities. What is available to one student is available to all! Equality!

The Office for Civil Rights is the governing body whose mission is to ensure equal access to education and to promote educational excellence through vigorous enforcement of civil rights in our nation’s schools. A complaint of discrimination can be filed by anyone who believes that an educational institution that receives federal financial assistance has discriminated against someone on the basis of race, color, national origin, sex, disability, or age. The person or organization filing the complaint need not be a victim of the alleged discrimination, but may complain on behalf of another person or group.

Examples of the types of discrimination prohibited include inequitable access to educational programs and facilities, denial of a free appropriate public education for elementary and secondary students, and refusal to implement, or, inappropriate implementation of academic adjustments in higher education.

The HOPE is that you never reach a point where you need to contact the Office for Civil Rights. If you feel as though the accommodations or related services in your child’s 504 plan are not being provided, you should act in a calm, controlled manner to rectify the situation. I suggest:

3) Schedule your meeting with the ADA Coordinator and use your notes and an open communication style. Explain why you believe your child’s rights are being violated. Make it clear that you have exhausted all steps with the school district and have no recourse but to contact your local Office for Civil Rights. In the majority of cases, the situation will be rectified at the level of the OCR, ADA Coordinator, or Superintendent. The school district will be subjected to an investigation by OCR that could potentially reduce federal funding for the school district.

1) Speak with your child’s teacher. There is a “chain of command” that is an unspoken tenant of most school systems. The first point of reference is the classroom teacher (at lower grade levels). If your child has more than one teacher, you may want to contact the 504 coordinator. If you remain unsatisfied, the principal would be next.

2) Schedule a meeting with the building principal and outline your concerns. Remember, documentation is your friend! Keep a notebook, document all conversations with a date & time stamp and always keep your email communications!

Keep in mind, stay calm, be professional and always refer to the situation as a team approach! “How will we as a TEAM provide the services to my child with a disability to be successful?” If you continue to encounter resistance, inform the principal that you will be speaking with the district’s ADA coordinator and/or superintendent.

504 PLANS: When Good Plans Go Wrong, Continued

This article was original published in the Winter 2015 edition of the Comprehensive Health Education Services (CHES) Life Lines For Health.

©2016. Octapharma USA Inc. All rights reserved.Date of preparation: /2016. NUW-01 -CAD-

For more information, contact your Octapharma Representative:

PHONE | EMAIL | @octapharma.com

Antihemophilic Factor (Recombinant)

347 Washington Street, Suite 402Dedham, Massachusetts 02026

Phone: 781.326.7645Fax: 781.329.5122info@newenglandhemophilia.orgnewenglandhemophilia.org

Aptevo BioTherapeutics LLC, Berwyn, PA 19312.

IXINITY [coagulation factor IX (recombinant)] and any and all Aptevo BioTherapeutics LLC brand, product, service and feature names,

logos, and slogans are trademarks or registered trademarks of Aptevo BioTherapeutics LLC in the United States and/or other countries.

©2016 Aptevo BioTherapeutics LLC. All rights reserved. CM-FIX-0060

Aptevo Therapeutics—a company that’s anything but ordinary

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Providing high-quality, specialized therapies for people with rare conditions

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