neha news0104.nccdn.net/1_5/04e/307/0e0/nnews-winter-2014-15...neha news winter 2014—15 page 3 an...

6th Annual NEHA Walk …………….……………………...1

From The President ………………………………………...2

Contact Information ...............................................................2

An Amazing Woman! …...………………………………….3 Exercise Right with Hemophilia ….....…………..…….……4

La Primera Conferencia Educativa Anual ………..……..… 5

NHF Annual Meeting: A Personal View ………….………. 5

Fall Fest 2014! …………………………………..………… 6

Beards For Bleeders and The Cherry Pie Challenge…....…. 6

NEHA Annual Golf Tournament ………..…….…….……..7

NEHA’s I.V. League Celebrates Halloween! ………….…. 8

Hemophilia Social Worker of the Year………………..…… 8

NEHA E.D. Heads to Siberia ……….…..……….………… 9

AmazonSmile Sends Donations to NEHA ..………...……. 10

Baxter’s New Co-Pay Assistance Program ………………. 10 AHF, Inc. Supports NEHA ………………..……………… 10

A FDA Approves Therapy .…………………….……..……11

Novo Nordisk Hiring …………….……………….………..11

BioRx Releases MyFactor App ………………………...….12

FDA Approves New Treatment ……………………...….. 12

NEHA Calendar Of Events………………………....……...16

In This Issue:

Winter 2014—15

6th Annual NEHA WALK— New Location!

T he Hemophilia Walk is changing DATE and LOCATION this year… We loved Bird Park, but

we're just TOO BIG!! We will be hosting the walk at a

new location this year: The historic PROWSE FARM at

the base of the Blue Hills, in Canton, MA. Our date for this year will be Saturday, June 6, 2015. This new

location will have room for more cars, plenty of tent

space, and it’s right off Hwy 95, and easy to access,

Prowse Farm is located at the gateway of the 6,000-

plus acre Blue Hills Reservation - public parkland

originally set aside for recreational use. The Blue Hills are referred to as a "crown jewel" of public parkland.

Prowse Farm includes 55 pastoral acres of open space

that rest at the foot of Great Blue Hill, after which

Massachusetts derived its name. The Native Americans

called the area Moswatusek - "land by the great hill."

So join us at this historic park as we strive to make

our 6th year Walk the best ever! We’ll still have all the things you’re used to: our DJ, our BBQ, Trophies, T-

shirt content, and hopefully a petting zoo!

Make this new site our best Walk ever!

Stay tuned; the Walk site will Open Soon!

June 6th, 2015 — Save the Date!!!

NEHA News

CONTACT INFORMATION

New England Hemophilia Association 347 Washington St., Suite 402

Dedham, MA 02026-1862

Phone: (781) 326-7645 Fax: (781) 329-5122

e-mail: [email protected]

Web site: www.newenglandhemophilia.org

Office Hours: Monday—Friday: 9 am - 5 pm

Staff: Kevin R. Sorge, Executive Director

Heather Case, Program Director Elizabeth Laracy, Development Associate

Sondra Traister, Walk Manager

Jill DeVirgilio, Administrative Associate

NEHA Officers: President: Patrick Mancini

Treasurer: William McCartney

Secretary: Kim DeAngelis

NEHA News Layout Editor Scott Fitzpatrick

NEHA News Winter 2014—15

From The President

D ear NEHA Member,

In the public and private corporate business world we

constantly hear people commenting on “small world”, meaning

of course that even in the big circles you run into many of the

same faces time and time again, across companies wide and far.

Hemophilia by sheer definition is tiny but still “big” in the

sense that there are still many people that we have not met, even

in the more local sense. Unlike the corporate world however, the connections are so different for obvious and various reasons – it

serves as a warm reminder that we have real substance in our

community in many ways, more far and wide than we might

consider.

Similar to the spring event, some of our New England folks

(including myself) participated in the recent “Gears for Good” bike ride fundraiser to benefit Helping Hands, a one-of-a-kind

program from Hemophilia Federation of America (HFA)

available to individuals and families in the bleeding disorders

community. The program assists people who are going through temporary financial crisis for reasons related to their bleeding

disorder.

This event is a valuable opportunity that extends so far beyond the obvious; for me at least, the chance to cross-connect

multiple participants with other Hemophilia events and

organizations, families, and personal triumphs was outstanding – sensational really. It was a great reminder that even with

constraints, people can achieve amazing goals.

The ride raised nearly $100,000 (potentially more), with

about twenty-six riders. Last year funds raised provided about 250 families with much needed relief. You can read more about

this event here: http://www.hemophiliafed.org/programs/helping

-hands/

One other point that I think is really important: the

achievement should not be limited exclusively to the physical

aspects of 160 mile ride, because “distance” in the journey of our

challenges is all relative. The bike ride was the instrument – a means to an end so-to-speak. The terrain that so many

participants and community members travel upon is equally

challenging, with its own form of rocks, sticks, leaves and mud just the same. For those who are unable to participate in this kind

of event, we recognize, respect, and acknowledge your ride.

Allie Boutin: Many thanks from New England for organizing such a great event. But…are we going to sweat at

least a little bit next year?!

Warmest Regards,

Patrick Mancini, NEHA President

NEHA News is a publication of the New England

Hemophilia Association. Electronic (.pdf) versions of

this newsletter are available on request. Contact

[email protected]

to 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

[email protected].

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.

http://www.hemophiliafed.org/programs/helping-hands/

http://www.hemophiliafed.org/programs/helping-hands/


An Amazing Woman By Mary McKenna Fitzpatrick

T his tribute is to my mom and all the moms out there who take care of a child with a bleeding disorder. My mother grew up with a dad who had hemophilia during an era when there was little, if any, treatment for his bleeding

issues. It was not uncommon to hear, “Put him to bed, treat with heat and give him an aspirin.” We have come such a

long way since then.

When my brother was 6 years old my parents moved from New Bedford, MA to Arlington, MA, in order to be closer to Boston Children's Hospital. In

these days, that may not seem like a long distance but fifty years ago, it was.

There was no home infusion at that time. My mom often drove my brother in to Boston every other day to get a blood transfusion, sometimes spending an

entire day in the hospital. My brother spent much of his childhood in Child-

ren's Hospital as a result of bleeding issues. My dad worked hard to support his family and my mom took care of the children. With four children age six

and under, she never complained, she never let us know if she was tired or

frustrated; she just did it. As my brother grew up with hemophilia and all the

medical issues that came with it, my mom never forgot us three girls. Not once did she ever treat us differently nor did

she forget our needs. The four of us were equally important to her. She was an amazing woman.

While going back and forth to the hospital on a regular basis, my mom found time to volunteer for N.E. Hemophilia

Association - a one room office in the old Red Cross building near Kenmore Square. She would take me in as a little girl where she would type letters and I would stuff envelopes. On the way home we always stopped to get something to eat -

a treat! One of the major ways to fund-raise at that time was to go door-to-door, asking for money (imagine doing such a

thing now!) She always took me with her. I was around 7-10 years old at the time. People would say, "Oh, my aunt had that for a month last year but now she is recovered" and give us five dollars. One man said, "I had that for a few weeks

when I was a boy, but they cured it." My mom would graciously smile, take their donation, and say thank you each time.

She was such a gift to the community. She was an amazing woman.

There was no family camp back then but there were summer picnics and a Christmas party. Our family made many friends there. My parents made a lot of friends in the local area who had children with hemophilia. I grew up to babysit

for some of those families as I had "experience" with bleeding issues. My mother was ‘on-call’ in the event of a real

emergency. My mom was as dedicated to her friends as she was to her family.

Fast forward to the nineties - we watched as many of those friends lost their children (my peers) to the HIV/AIDS

epidemic. We were all with my brother when he died at age 39. My mom cried and was heartbroken, but then she put on

her armor and went on with life, supporting us girls as she always did. When she had grandsons and a granddaughter

with hemophilia, she took care of and supported them also. She was just amazing.

Years later she and my dad came to Hemophilia Family Camp, first in Maine, then at Geneva Point. By now she

was an older woman but she loved seeing the young ones running around at camp. All these years later, my mother was

still offering to help. She once said to me how happy she was that the kids at camp could live much better lives due to advances in hemophilia. She never felt bitter or sad that her own son did not have the same opportunities; she just felt

very grateful that the younger families did. That was my mother. Thank you, Mom, for what you taught me so that I

could be a good parent to both of my children. It is all because of your example, your love and your grace. You were our

first teacher about all things hemophilia. Rest in peace, Mom. You surely deserve it.

In loving memory of Nancy McKenna

who died September 30, 2014, Arlington, MA


What are the benefits of exercise for a person with

hemophilia?

I always tell my patients

that people with hemophilia

are just like anyone else. Just because you have a bleeding

disorder doesn’t mean you are

exempt from other ailments! As you may know, physical

activity and exercise are bene-

ficial for all people in main- taining a healthy lifestyle but

especially for individuals with

bleeding disorders, as exercise is a great way to preserve

joint function. When considering a new activity or a sport, a patient should speak to his or her treatment team

first to evaluate the potential physical risks and benefits

of an activity based on the patient’s personal situation.

Are there any psychosocial benefits of being active?

There has been a lot of research conducted about the

psychosocial benefits of physical activity. For example, participating on sports teams can teach children and teens

how to socialize, engage in teamwork, and cooperate with

others. All these benefits apply to individuals with

bleeding disorders as well.

How often should people with hemophilia exercise?

I encourage everyone to check out the US

Department of Health & Human Services website (http://www.health.gov/paguidelines), which provides resources

to help Americans improve their health through physical

activity. Individuals with bleeding disorders can pair

these guidelines with recommendations from their physical therapists and hemophilia treatment centers,

keeping their unique physical conditions top of mind.

What are safe sports that individuals with bleeding

disorders can participate in?

Individuals with bleeding disorders may receive a list

of recommended, low-impact, low-risk activities from their health care professionals, including walking,

swimming, and golf. However, the answer to this

question is not always black and white. Each individual’s

situation is unique, so I start by asking a patient and his or her family what activities they are interested in. Together

we assess the potential risks and benefits of the physical

components of each activity, and then make a decision

(Continued on page 11)

Exercise Right With Hemophilia

I t is important to be active, but it is just as essential to play it safe. If you or a loved one has hemophilia or

another bleeding disorder, there are many things you can

do to lead an active and healthy lifestyle while

minimizing physical risks and injuries. Angela Forsyth, PT, DPT, a physical therapist specializing in bleeding

disorders with more than 17 years of experience,

understands the importance of exercise for people living with hemophilia. Dr. Forsyth, Director of BioRx’s

REBUILD, is an internationally recognized leader within

the hemophilia community and has served on Novo Nordisk’s Hemophilia Experiences, Results, and

Opportunities (HERO) International Advisory Board

since its inception in 2009.

Novo Nordisk connected with Dr. Forsyth to learn more about her perspective on the physical and psychosocial

benefits of exercise, and the role of physical therapy

within the bleeding disorders community.

When did you begin working with the bleeding disorders

community? How did you become involved with

hemophilia advocacy groups such as the National Hemophilia Foundation (NHF) and World Federation of

Hemophilia (WFH)?

I have been collaborating with the bleeding disorders

community since 1997. I began working with a hemophilia treatment center when the US Centers for

Disease Control and Prevention started their Universal

Data Collection Project, serving as a physical therapy liaison for the program. I then went on to hold numerous

positions with the NHF and the WFH, including

becoming chair of both the Physical Therapy Working

Group of the NHF and Musculoskeletal Committee of the

WFH.

In Novo Nordisk’s HERO study, it was reported that only

40% of adults and 24% of children with hemophilia in the United States had involvement with physical therapists in

their hemophilia care.1 Why is it so important for people

with hemophilia to see a physical therapist? What is their

role as part of the comprehensive care team?

Physical therapists are key members of a patient’s

comprehensive care team. Our role is to prevent and

assist with muscle and joint problems by providing education and support to individuals with bleeding

disorders and their families. Regular visits with a physical

therapist allow a patient to have access to customized plans that will fit his or her individual needs, taking

lifestyle, skills, and physical condition into consideration.

http://www.health.gov/paguidelines

http://www.health.gov/paguidelines


NEHA Auspicio la Primera Conferencia Educativa Anual

que Celebra el Mes de la Hispanidad

N EHA auspicio la primera conferencia educativa

anual que celebra el mes de la Hispanidad para los

miembros hispano hablantes los días sábado 27 de

septiembre y domingo 28 de setiembre. Doce familias

asistieron a este maravilloso evento que fue

completamente en español. Se ofrecieron cinco (5)

sesiones educativas gracias al apoyo de Baxter, Bayer,

CSL Behring, Novo Nordisk y Walgreens. Recibimos

respuestas muy positivas de la comunidad, en las

evaluaciones se incluyeron comentarios como: “Todo

estuvo muy bien” ; la conferencia estuvo “muy

informativa y me inspiro”

NEHA preguntó a las familias sobre que temas les

gustaría tener información el año que viene ya que se ha

empezado a planear la incorporación de actividades para

los adolescents, para los hermanos de niños con un

desórden de la sangre, y para proporcionar más tiempo y

espacio para crear nexos con la comunidad. Nosotros

esperamos con ansias tener este evento cada año y

continuar brindando nuestro apoyo, la defensa de

derechos y recursos para nuestra comunidad hispana.

N EHA hosted the first annual Hispanic Heritage

Month Event on Saturday and Sunday, September

27-28. Twelve families were in attendance at this

wonderful, inaugural event representing over 60 people.

The conference weekend was held entirely in Spanish.

There were five educational sessions hosted by our

sponsors: Baxter, Bayer, CSL Behring, Novo Nordisk

and Walgreens , who provided the speakers for the event.

We received a very positive response from the

community. Evaluations included comments such as,

F or 20 years, I’ve wondered what the NHF annual meeting was like. People coming from all over the

United States, to learn, bond, and have fun. Going to

Washington D.C. for this year’s annual meeting proved to

be so much more than I ever imagined. Sessions were held on topics on education concerns, advances in factor

options, and motivational speakers. NHF offers a number

of programs for our young adults that I hope some of our “kids” will look at. They also are offering educational

programming for chapters that NEHA may be able to fit

in at an upcoming Spring or Fallfest. In celebration of 20 years since the passage of the Ricky Ray Act, a number

of people who worked so hard in getting the act passed

shared their stories. The panel included Dana Kuhn, who

started PSI, a nonprofit company that assists patients with chronic conditions, Donna Shalala, Secretary of Health

and Human Services under President Clinton, aides to the

Florida Senator and Representative who sponsored the bill, among others who worked so hard for our

community. It reminded me of how far we have come in

the last twenty years.

In addition to the sessions, were the dinners, lunches,

the exhibit hall, and the final night event at the National

Air and Space Museum. It was great to catch up with

friends, meet new people, and put faces with names I’ve known. The opening session was energizing and included

entertainment by comedian and juggler, Marcus Monroe.

Check him out on you tube, he’s very funny. The exhibit hall was more than I ever expected. The booths were

inviting, fun, and yes, there was swag. Some booths had

games to be played, food to be enjoyed, and one on one

conversations to be had. Heather and I went to the National Air and Space Museum and enjoyed the

planetarium and exhibits without the crowds.

Going to NHF reminded me that we have come so far since the 1980’s and we will never let anything happen to

our community again. Living in the northeast, we are


NHF Annual Meeting: A Personal View

By Annaliese Seitz-Mund

“Everything was great!” and the conference was “very

informative and inspirational.” NEHA asked attendees

for topics for next year and have already begun plans to

incorporate a youth activity, siblings, and more time to

build community connections. We look forward to

hosting this event annually and continuing to provide

support, advocacy and resources to our Spanish speaking

community.


Beards For Bleeders and The Cherry Pie Challenge

Fall Fest 2014!

F all Fest was a huge success! We had 50 families and over 130 individuals attend our annual fall conference in Portland, Maine. The general session, “Honoring Our Past, Building Our Future” was presented by Rich Pezzillo.

Rich’s presentation highlighted the milestones, triumphs, and tribulations of the bleeding disorder community.

As always, we hosted rap sessions to provide the community with an opportunity to connect and talk in a facilitated but

unstructured conversation. Thank you to our volunteer rap session facilitators — Jim Boutin, Carol Firth, and Sarah

Moran.

For the first time we held a teen track at Fall Fest. The workshop was hosted by Bayer. Mike Rosenthal facilitated this

workshop for teens and parent(s) which sought to jump start teen responsibility for their own hemophilia care under

parental care and HTC guidance. Thanks to Max Goddard for adding his personal perspective on transitions.

Breakout sessions were made possible through our partnerships with Baxter and Biogen Idec; we had one on Managing

Chaos, facilitated by Steve Ockerbloom, and on Dental Care facilitated by our community member, Missy Kennell.

Thanks to our incredible youth activity volunteer chaperones: Brandon Boomsma-Hall, Bonnie Boomsma-Hall,

Jaide Boomsma-Hall, Darian Ross and Rebecca Tham. We were able to provide daycare to the youngest members of

our community and are grateful to the YMCA of Greater Portland for providing us with two excellent daycare

workers. And always there to welcome everyone at the registration table was Maryann May. Lastly, Portland was a great host! Even with the awful weather, those interested were able to take a trolley ride through Portland, learn a bit of

history and see the sights. We appreciate the support from everyone who attended, played a role and made our

autumn community gathering great!

Beards for Bleeders and The Cherry Pie Challenge are two fundraising and awareness campaigns for the

bleeding disorder community. Started by NEHA board

and community member, John Bruno, Beards for

Bleeders is growing quickly and youth across the area

are taking great pleasure in “pie-ing” a parent!

Beards for Bleeders currently has 46 growers who

have agreed to grow a beard for 6-12 months. The donations go to a local, national and world bleeding

disorder organization of the grower’s choice.

The Cherry Pie challenge is also garnering Great support! Those who have accepted

include Dennis Mackey, Jane Smith, Kathy

Byrne, Maryann May, and Heather Case.

If you are interested in learning more or

supporting a current grower by making a

donation, please visit the website for Beards for

Bleeders: http://

beardsforbleeders.homestead.com/index.html.

If you want to see any of the above people

“pie-ed”, visit Facebook to check out the

videos!

http://beardsforbleeders.homestead.com/index.html

http://beardsforbleeders.homestead.com/index.html


O n a beautiful Monday in September the NEHA golf committee held its 24th Annual Golf Tournament and Auction at Cyprian Keyes in Boylston, MA. Over 20 Volunteers arrived at the course before sun-up to ensure every detail

was just right for the golfers. After registering, picking up their goodie bags and some quick reunions with friends over

breakfast, over 112 golfers teed-off for a challenging day on the tough Cyprian Keyes course.

Our Golf Tournament is much more than just a golf event; it’s a day full of golf challenges! Several holes had additional activities such as the longest drive hole, or the Beat the Pro hole. At the Par 3 Beat the Pro hole, our friend

and professional golfer Perry Parker was camped out offering a chance to double your money by placing the ball closer

to the pin than he could. There were many challenges and many failures as Perry demonstrated his skills, consistently out-driving the challengers. With the generous support of our golfers, sponsors and tireless volunteers, NEHA raised

over $70,000 that day! Stay tuned for details about next year’s tournament scheduled for Sept. 14, 2015.

Another Beautiful Day on the Golf Course for NEHA


Facebook

Everyone’s on FACEBOOK! And so are we! Follow NEHA’s activities, events and achievements on Facebook. Just search for New England Hemophilia.

Become a friend and get all of the latest news and updates from the chapter.

Post pictures of NEHA events and remember the Good Times!

NEHA’s I.V. League Celebrates Halloween!

Hemophilia Social Worker of the Year

P eg Geary, MA, MBA, MPH, LCSW, CCM, from the New England Hemophilia Center, was named as the

recipient of the National Hemophilia Foundation (NHF)

2014 Social Worker of the Year Award. The award honors

an individual who has demonstrated outstanding service to the bleeding disorders community beyond their day-to-day

responsibilities. The recipient serves as a role model for

others in the field. Peg has worked at UMass Memorial for more than 30 years in various roles including her current

role as hemophilia department manager. Peg was a member

of NHF’s Social Work Working Group from 2005 through 2012 and led the research subcommittee. Pictured is Peg

(center) at the foundation’s national meeting where she was

named Social Worker of the Year. NEHA is pleased to

congratulate Peg on her award!

O ne of NEHA’s newest groups. the I.V. League hit the town on Halloween October 31 up in Portland this week. Coupling their gathering with the November 1st Fall-Fest event, it was a busy weekend for the members. The IV

League is NEHA’s newest program, and is designed as a support group for Men over 21 years of age that have a

bleeding disorder. To date, there are about a dozen members with more expressing interest. Each event couples an

educational session provided by one of our corporate partners followed by a private Rap session among the members. Earlier this year, the group went canoeing in the Boston area, and future plans include more outdoor activities when

weather permits. Our event on October 31st was a dinner program at the White Cap Grill hosted by Baxter, followed by

lots of social time. Supporting our event, Bayer and Octapharma also hosted a dinner for the wives and significant others

of the I.V. League, and everyone joined together afterwards for some Halloween fun!

In 2015, NEHA plans to apply to the Hemophilia Federation

of America (HFA) to convert our I.V. League group to a Blood Brotherhood chapter. The format is the same; however the HFA

offers additional communications to the BB members such as

Webinars and other social media interactions. NEHA has already

approached the HFA about offering a Blood Brotherhood chapter in New England, and we are waiting for formal approval. With

that approval also comes some limited funding which will help

us in organizing future events. If you are, or know someone that is, over 21 and a male that has a bleeding disorder, come join us

and be part of the Brotherhood! Give us your contact information

and we’ll add you to our BB mailing list for upcoming activities. Stay tuned for additional programming to support, educate and

advocate for males in our community!


As some of you have learned over the years, NEHA’s Executive Director Kevin Sorge has a unique hobby: he’s an Adventurist, traveling the world each year in search of the next big thrill. He loves exploring different cultures, eating

different foods, meeting interesting people, and the possibilities of getting lost in a foreign country (been there-done

that!)! Most of his trips have taken place on a motorcycle which many agree is the best way to see the world. Kevin currently owns a BMW R1150RT motorcycle designed for long range touring, but usually rents a similar bike when

he’s traveling. He’s shared highlights of his many trips with NEHA members, and always has the next big trip booked

when people asked where he’s going next.

Over the past 12 years, Kevin has traveled to over 44 countries including some unique spots like South Africa, Brazil, Peru, Norway, Italy and Croatia. He’s been to the highest drivable points on the American continent, (Prudhoe Bay,

Alaska and Ushuaia, Argentina (bottom of South America), and the same on the European/African continent (North

Cape, Norway and Cape Agulhas in South Africa). One of his bucket list items, he has crossed the Arctic Circle twice traveling 400 miles north of it to the Barents Sea. He estimates that he’s driven over 20,000 miles outside of the USA.

But it’s more than just the miles. While he’s been traveling the world, Kevin has:

Visited the Machu Piccu ruins in the Andes in Peru Flew in a helicopter above the Christ the Redeemer statue in Rio De Janeiro, Brazil

Rode with a pack of Reindeer in Finland

Went on a Safari in Kruger Park in South Africa.

Explored the ruins of Pompeii Rode the 10 highest peaks in the Swiss Alps

Drove a motorcycle on the German autobahn at 140 mph

Made the leap and did the world’s highest Bungey Jump at Bloukrans Bridge, South Africa Motorbiked the French Alps roads where the Tour de France is held

Visited Auschwitz concentration camp in Poland

Toured the war ruins in Bosnia and Herzegovina Walked the city walls in Dubrovnik, Croatia

Visited the world’s largest Cuckoo clock store in the Black Forest of Germany

Celebrated Mass with the Pope in Rome

And so many other interesting and fascinating places.

Kevin’s next adventure is a bit different in that he’s leaving the motorcycle behind and getting on a snowmobile. This

adventure will take him from Boston to Moscow for a few days and then eventually to the mountains of Siberia in

Russia. Riding along beautiful Lake Baikal, the deepest lake in the world, this trip will bring him to some extreme weather, well under 0 degrees F. But it’s just one more adventure for his “bucket list”. He’s already thinking about next

year; possibilities include Morocco, Iceland or Nepal! Many more Adventures await!

NEHA E.D. Heads to Siberia for Another Adventure!


A mazonSmile is a program where Amazon donates 0.5% of the purchase price of eligible products to the charitable organizations selected by their customers. NEHA has received notice that several of our members are using this site

which in turn sends donations to NEHA. We would like to encourage others that may use Amazon for their shopping to

register for this program. This is no cost and the site is exactly the same as the regular Amazon site- it just sends a

portion of your purchase price to NEHA!

In order to enable receipt of donations from this program, you must go to http://smile.amazon.com/ch/04-6111861

so that your purchases are properly credited to NEHA. You will be asked to create an Amazon account with ID and

passcode. The transfer and donation does not include any information about your purchases. Nor will NEHA receive any personal information about you or your family. All NEHA will receive is a quarterly check from Amazon Smile

indicating that purchases were made. The Amazon Smile site is full of good information and should provide answers to

any of your questions. With the Holiday season upon us, now is a good time to get registered because we know that a large number of our supporters will use Amazon at some point this year. Thanks so much for considering this easy-to-

initiate way to support NEHA!

AmazonSmile Sends Donations to NEHA

Baxter Launches New Co-Pay Assistance Program

B axter Healthcare Corporation recently announced a new financial support program for the hemophilia community. This new program offers CoPay, Coinsurance and Deductible support to eligible hemophilia patients with

commercial insurance, regardless of household income.

“We understand that healthcare costs and the uncertainty of healthcare coverage may be an ongoing struggle,” said

Jacopo Leonardi, General Manager, US Hemophilia, Baxter Healthcare Corporation. “Baxter is committed to evolving our support programs to meet the community’s changing needs, and we understand the importance of assuring access to

the medication prescribed by each individual’s healthcare provider.”

A patient may qualify to save up to $12,000 every 12 months on out-of-pocket costs for a Baxter factor or bypass product through Baxter’s CoPay Assistance Program.* The program is designed for people who are starting or receiving

treatment with a Baxter factor or bypass product and have commercial insurance that covers medication costs and allows

for CoPay assistance.

Baxter has developed the enrollment process to be quick and easy: Call 1-888-BAXTER9 (1-888-229-8379) and

answer a few simple questions about yourself and your pharmacy. After the call, a CoPay program representative

contacts the pharmacy to verify eligibility. Visit http://www.hemophiliasupport.com for more information, as well as

full Terms and Conditions for Baxter’s CoPay Assistance Program.

Patients and caregivers can also visit www.nava.baxter.com or call 1-855-322-NAVA (1-855-322-6282). The

connection with the NAVA program helps streamline patient requests for assistance and offers many resources for

people with hemophilia, including information, tools, and resources relevant to patients, regardless of their stage in life; advocacy and resources for health insurance; and one-on-one personal support and guidance for living with a bleeding

condition.

AHF, Inc. Supports NEHA

K evin Sorge, NEHA Executive Director, is pleased to accept this generous contribution from Mark Zatyrka of AHF, Inc., which is NEHA’s largest

homecare company contributor! We are truly grateful for their tremendous

support to our community!

http://smile.amazon.com/ch/04-6111861

http://www.hemophiliasupport.com


O n November 5, 2014, the US Food and Drug Admin-

istration (FDA) approved the

combination use of two previous-

ly approved separate oral therapies, Simeprevir (Olysio™) and sofosbuvir (Sovaldi™), for the treatment

of chronic hepatitis C viral (HCV) infection. It is a

ribavirin- and interferon-free regimen, both of which

were notorious for causing debilitating side effects.

Simeprevir, manufactured by Janssen Therapeutics, is

a protease inhibitor that halts the progression of HCV, thus preventing it from reproducing. Sofosbuvir,

manufactured by Gilead Sciences, is a daily oral

nucleotide analogue inhibitor composed of a small

molecule compound that blocks HCV’s ability to replicate. The FDA approval encompasses the

combination use of simeprevir/sofosbuvir for both

treatment-naive and treatment-experienced patients. Trial regimens included a 24-week duration for patients with

cirrhosis (scarring of the liver) and 12 weeks for those

without cirrhosis, both of which excluded the use of

either ribavirin or interferon.

The new FDA approval is based on results of the

COSMOS study, a phase II trial that included patients

with HCV genotype 1. Rates of sustained virologic response (SVR, meaning they no longer had detectable

virus in their blood) measured 12 weeks after treatment

ended were 93% among those treated with the combination for 12 weeks, and 97% among those treated

for 24 weeks. The most common adverse reactions

reported by more than 10% of treated patients during 12

weeks of combination treatment were fatigue in 25%, headache (21%), nausea (21%), insomnia (14%), itching

(11%), rash (11%), and sensitivity to light (7%).

Dizziness (16%) and diarrhea (16%) were the most commonly reported among those patients treated for 24

weeks.

Source: Family Practice News, November 6, 2014.

A FDA Approves Oral HCV Combination Therapy Free of

Ribavirin and Interferon

depending on the person’s physical state.

What plans do you have in the future for supporting the

bleeding disorders community?

I work with individuals with bleeding disorders and other health care professionals from the community

regularly, and therefore plan to continue my involvement

both through my career as well as through volunteering. I hope to maintain my relationships with the NHF and

WFH and continue contributing to scientific journals such

as Haemophilia. One thing I am looking forward to most is volunteering and working within the community to

support education around the important role that physical

therapists play in the comprehensive care team.

For more information on the HERO study findings, please visit http://www.ChangingPossibilities-US.com/

Inhibitor/HERO.aspx.

Exercise Right (Continued from page 4)

Novo Nordisk Hiring for New Facility in New Hampshire

fortunate to have the support we give one another, the HTC’s and our chapters. That being said, there is more for us to

do, to share, and to learn to make our community and our children stronger. Next year’s NHF Annual Meeting is going

to be held August 13-15 in Dallas. Sponsorships are available from a number of sources if you are interested in

attending.

NHF Annual Meeting (Continued from page 5)

N ovo Nordisk, a global pharmaceutical company that produces medicines for patients with diabetes,

hemophilia or growth-related disorders, announced plans

to hire up to 90 people at its newly-acquired

manufacturing plant in West Lebanon, NH. The facility

was formerly owned by Olympus Biotech.

The facility will produce products for the treatment of

hemophilia in the United States, including the long-acting recombinant factor VIII, N8-GP for those with

hemophilia A.

"We're pleased to be bringing this site back to life, and make it a part of Novo Nordisk's growing network of

manufacturing sites," said Steen Weber Jensen, corporate

vice president, Novo Nordisk. "Our long-standing

commitment to patients and families affected by hemophilia means we have to continuously improve how

we supply our medicines, and this new site will give us


http://www.ChangingPossibilities-US.com/Inhibitor/HERO.aspx

http://www.ChangingPossibilities-US.com/Inhibitor/HERO.aspx


T he U.S. Food and Drug Administration yesterday approved Obizur [Antihemophilic Factor (Recombinant), Porcine Sequence] for the treatment of bleeding episodes in adults with acquired hemophilia A (acquired Factor VIII

[FVII] deficiency).

Acquired hemophilia A is a rare, but potentially life threatening, bleeding disorder caused by the development of

antibodies (immune system proteins) directed against the body’s own FVIII, a protein important for blood clotting. When FVIII is inactivated by these autoantibodies, a person’s blood doesn’t clot normally, resulting in excessive

bleeding that can occur spontaneously or following an event such as injury or surgery.

Unlike inherited hemophilia, acquired hemophilia A is not a genetic disorder and affects both males and females. The development of acquired hemophilia A has been related to other medical conditions or health states, such as

pregnancy, cancer, or the use of certain medications. However, in about half of the cases, no underlying cause can be

found. Diagnosis of this condition can be difficult and the severity of the bleeding can make treatment challenging.

“The approval of this product provides an important therapeutic option for use in the care of patients with this rare

disease,” said Karen Midthun, MD, director of FDA’s Center for Biologics Evaluation and Research.

BioRx Releases MyFactor App for Android

B uilding on its entrance into the mobile healthcare market in 2013, BioRx today announced the introduction of its MyFactor hemophilia app to the Android operating system from Google. The company is also near completion of a

corresponding replacement of its iOS app so that it mirrors the Android's layout and functionality.

Originally launched in October 2013 for Apple iPhones, MyFactor allows hemophilia patients to electronically

record bleeding episodes and treatments, and facilitates easy sharing of information with their healthcare team,

including physicians, pharmacists, nurses and care coordinators.

"We are very happy to offer the MyFactor app to Android users," said Eric Hill, co-founder of BioRx. "Over the

past year, hundreds of iPhone users have downloaded the app. With our expansion into the larger Android smartphone market, we expect that number to multiply greatly which will help us reach and support even more patients in the

community."

The new Android platform is available for immediate download on Google Play. For more information, visit

www.biorxhemophilia.com/myfactor

CINCINNATI, Ohio (November 3, 2014)

new, vital capacity."

"Novo Nordisk is making a long-term investment in the Upper Valley, and we're glad that New Hampshire is a part

of the company's manufacturing division," added Peter Gariepy, vice president and site manager for the West Lebanon

plant. "The community can look to Novo Nordisk to be a cornerstone for the foreseeable future."

Those looking to apply for opportunities at the New Hampshire plant can visit

www.novonordisknewhampshirejobs.com for more information and details about positions.

WEST LEBANON, N.H., Oct. 29, 2014 PRNewswire

Novo Hiring (Continued from page 11)

FDA Approves New Treatment of Rare Form of Hemophilia

http://www.biorxhemophilia.com/myfactor

http://www.novonordisknewhampshirejobs.com

Electronic (.pdf) versions of this newsletter are available on request. Contact the NEHA office for information!

CALENDAR OF UPCOMING NEHA EVENTS For further information about these or other events, call NEHA at (781) 326-7645

Mission Statement The New England Hemophilia Association is a non-profit organization dedicated to improving the quality

of life for persons with bleeding disorders and their

families through education, support, and advocacy.

Services include:

Information and referral

Medical symposia and educational programs Social and recreational activities for children and

families

Family Camp Teen Programs

Spanish-language programming

Peer support groups

Emergency financial assistance Advocacy and Legislative Support

Please contact the office for more information Phone: (781) 326-7645

e-mail: [email protected]

Website: www.newenglandhemophilia.org

New England Hemophilia Association 347 Washington St. Suite 402

Dedham, MA 02026

Address correction requested

January 13, 2015

NEHA Board of Directors Meeting, Waltham, MA

January 23—25, 2015

NACCHO Camp Conference, Tempe, AZ

February 25—27, 2015

Washington Days—Lobbying at the Capital

March 10, 2015


April 11, 2015

SpringFest, Sheraton Hotel, Needham, MA

May 3—4, 2015

HTC Regional Meeting

May, 2015

Couples Retreat, Cape Cod, MA, date TBD

June 6, 2015

Hemophilia Walkathon, Canton, MA

June 9, 2015


July 21—25, 2015

NEHA Family Camp, Moultonborough, NH

August 13—15, 2015

NHF Annual Conference, Dallas, TX

September 15, 2015


September 26—27, 2015

Hispanic Heritage Month Conference, Location TBD

October, 2015

Women’s Retreat, date and location TBD

November 7, 2015

Fall-Fest, location TBD

neha news0104.nccdn.net/1_5/04e/307/0e0/nnews-winter-2014-15...neha news winter 2014—15 page 3 an...

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