Facts N' Factors e-Newsletter
March 2015

 

From Hemophilia Federation of America's Website:

"In 1986, President Ronald Reagan designated the month of March as Hemophilia Awareness Month to bring awareness and attention to those living with a bleeding disorder. Hemophilia Federation of America (HFA), along with its member organizations across the country, commemorates March as National Hemophilia Awareness Month. HFA encourages member organizations and patients affected by a bleeding disorder to spread the word about Hemophilia Awareness Month by posting messages on Facebook, Twitter, giving presentations in schools, and sharing information with their family and friends. Click  HERE to follow HFA on Facebook for a fact a day."

VHF Celebrates Hemophilia Awareness Month

VHF has moved our Bowling for Bleeding Disorders Bowl-a-thon to March. We are excited to watch this event grow each year and look forward to using it as a platform to spread awareness about bleeding disorders.

 

Help Us Celebrate 

Even if you are not signed up to bowl in this Saturday's bowl-a-thon, you can still participate by making a cash donation throughout the month of March. $5, $20, $50 every little bit helps so go HERE to donate to the event or go HERE to find a team of friends that you can donate to.  

 



 
Get Involved

VHF Events This Month

March 12 - Educational Dinner - Come out, enjoy dinner, and connect with your bleeding disorders community as we learn more about HERO: Strength in Numbers based on the HERO (Hemophilia, Experiences, Results, and Opportunities) Study. Shula's 347 Grill in Roanoke, VA. Go HERE to RSVP. 

 

March 14 - HFA Blood Brotherhood Event - Join men over the age of 21 with a bleeding disorder to gather and talk with others experiencing similar challenges. This event includes a networking dinner and a craft brewery trolley tour in Richmond, VA. Go HERE to RSVP. 

 

March 21 - First Step Picnic - Families with children who have been diagnosed with a bleeding disorder in the last 7 years will gather for lunch, an educational presentation, networking with other families, and plenty of time to enjoy the Children's Museum of Richmond. Go HERE to RSVP. 

 

 

VHF Wine Tasting and Silent Auction Fundraiser 

"Savor the Flavor"

 

Come savor a tasting of flavorful wines expertly paired with hors d'oeuvres

by C'est Le Vin Restaurant and Wine Bar. Live music by Church Hill Music Co. and you will not want to miss our popular raffle and silent auction. For more information go HERE. 

 

Sunday, May 3, 2015 | 3:00 to 5:00 PM

 

C'est Le Vin Wine Bar and Art Gallery | 15 N 17th ST, Richmond, VA 23219 

 

$40 per person | $75 per couple | Register Here  

  

We are still accepting donations for our raffle and silent auction.The most popular items are gift certificates, jewelry, overnight stays, vacation homes, spa experiences, themed baskets, etc...  Please email admin@vahemophilia.org  for more information.

 

 



 
Advocacy
  
Advocacy Wrap-up March 2015

 

Becky Bowers-Lanier, VHF/HACA Advocacy Consultant

 

The General Assembly adjourned one day early on Friday, February 27th. All in all, it was a somewhat conflict-free session, if one can describe any legislative session like that these days. It was certainly helped by the fact that the revenue projections were up in December, leading to having more money to amend the state's biennial budget and that in turn, led to more money for salary increases for state and public university and college employees AND more money for Health and Human Resources. All very good.

 

Where there was conflict, it seemed to me, were the instances in which politicians on both sides of the aisle attempted to score points with their constituencies in light of elections in November.  
 
When we met for our advocacy days in January, we knew we would focus our efforts on reducing the burden of high-cost or specialty tier medications for people with chronic conditions such as hemophilia and HIV. We knew at our meeting at the Omni in Richmond that our House bill was number HB 1948 (Delegate O'Bannon told us that 1948 was a fine year!). After our advocacy day (which occurred very early in the legislative session), Senator Roslyn Dance took the Senate lead with SB 1394 , which was nearly identical to HB 1948. Go HERE to read more. 

 


NHF Washington Days 2015

Kelly Waters, VHF Executive Director

On February 26, 2015 19 Virginians joined over 300 NHF Washington Days attendees to walk the halls of Congress letting our US Representatives and Senators know what is important to the bleeding disorders community. HACA and VHF members visited a total of 8 offices (our two Senators and six Representatives offices).  

 

Key issues included asking members to support funding for the hemophilia programs at CDC and HRSA (Health Resources and Services Administration; asking for co-sponsors and legislation to support changing the Skilled Nursing Facility (SNF) policy to allow for separate billing for factor; and requesting co-sponsors and legislation for the Patient's Access to Treatments Act (PATA) that prevents private health insurance plans from requiring higher co-payments and coinsurance for medication in the specialty drug tier (typically Tier IV) than what is charged for drugs in the non-preferred brand drug tier (typically Tier III). To learn more about these important issues go HERE 

  

Highlights of the day included 2 inches of snow, the Walker kids sitting in Representative Hurt's desk chair, legislative aids and Representatives remembering us from previous visits, being able to share our stories of who we are, and hanging out with good friends. VHF has Washington Days Scholarships, so if you are interested in joining us next year be sure to ask us about how to apply. Go HERE for more pictures.  

 



 
Event Wrap-up

Educational Dinner
 

 

Almost 30 VHF members gathered in Virginia Beach at Burton's Grill on Wednesday, February 11th for Facts First, an educational program for individuals with  bleeding disorders and their caregivers. The topic for this dinner was "Healthcare Reform", and Tom Lamondra, Senior Manager, Advocacy & Reimbursement at Baxter BioScience, helped families understand healthcare legislation and its impact on the bleeding disorders community. Thank you to Megan Midura, CHKD social worker and VHF Board Member, for taking the time to be our VHF representative at this dinner. Also thank you to everyone that came out and to Baxter for sponsoring this educational dinner.  

 

Please join us for our next Educational Dinner on March 12th in Roanoke. Go HERE for more information. 

 

Educational Lunch and Monster Truck Show

 

 

 

 

 

 

 

 

 

 

On February 21st, in the freezing cold and snow almost 100 VHF members (with earplugs in hand!) came out to the Richmond Coliseum for an educational lunch and monster truck show. This popular event did not disappoint and continues to serve up super sized fun for all ages.  

Go HERE for more pictures. 

 

Thank you to everyone that came out in spite of the weather and to MedPro Rx for sponsoring this fun outing that helps us to strengthen and grow the bonds of our bleeding disorders community. 

 

Save the date for our next educational lunch and family fun event in the Natural Bridge area on June 13th.

 





 
HTC News

UVA Lunch Lecture Series

 

Leah Willey, LCSW, Pediatric Social Worker, UVA Children's Medical Center

 

UVA's Pediatric Hematology Treatment Center is very excited to have started a lunch lecture series during our Comprehensive Clinics held on the 3rd Tuesday of each month. The education series are led by myself, Megan Shifflett, Education Consultant, Marc Gilgannon, Physical Therapist, Margy Sennett, Nurse Practioner and Dr. Colleen Druzgal.

 

We have hosted 2 lectures since implementing the program in May of 2014. Our patients are scheduled by age group and we have planned our lectures to target age specific topics for our patients and their families. Our lectures provide a time for learning and fellowship for our parents as well as separate activities targeted for our patients. The topics covered to date have been "Safety and Summer Activities" and "Healthy Teen, Healthy Voice". Our next lunch lecture will be held in May, and will be focused on parenting a child with a bleeding disorder throughout their development. We hope to utilize guest speakers from the community for future sessions.

 

Patients and families have been readily engaged in these sessions and provided positive feedback , and strong interest in attending these lectures going forward. VHF generously funds the lunch that is provided, as well as 10 dollar gift cards to Target for our patients to be able to purchase something to assist them in their ongoing success, both in school and participating in safe activities. We are always looking for ways to improve our education series, and would welcome any feedback or ideas for future lunch lecture topics from the VHF community. Also, if you anyone would like more information on these education series please contact me at LW3FC@hscmail.mcc.virginia.edu.

 




 
Community News

Camp Holiday Trails Spring Spruce-Up


This is a great opportunity to give back to our wonderful partner Camp Holiday Trails! If you are interested in volunteering or learning more about Spring Spruce-Up email   program@campholidaytrails.org

 

PEN's Biennial Bleeding Disorder Resource Guide 2015

 

Laurie Kelley and Zoraida Rosado  

 

This resource guide is a sampling of the many resources available in the bleeding disorder community. Because these are less well publicized, most are non-NHF. You can find more resources by viewing the publications or resources section of each website, or by contacting the company or organization. Go HERE for the full guide.

 

Copyright: ´┐ŻLA Kelley Communications 

 

NHF Annual Meeting Registration is Now Open

 

The National Hemophilia Foundation (NHF) is pleased to announce that registration for its 67th Annual Meeting, August 13-15, 2015, in Dallas, Texas, is now open. This annual conference draws together the entire US bleeding disorders community. It is the place to find out the latest information on research and treatment breakthroughs, educational programs, and insurance and advocacy initiatives. Go HERE for more information.

 

If you are interested in attending, but need financial help to do so then check out VHF's educational scholarship to attend a national meeting. The deadline to apply is May 1, 2015. Go HERE for more information.

 

HFA Advocacy and Government Relations Internship

 

This summer, HFA is offering a ten week Advocacy & Government Relations Internship for 2 college students (or recent graduates) ages 21 or older. Selected candidates will receive paid travel to and from DC, housing, and a small stipend. Candidates will also: 

o   Develop a deeper understanding of health care policy

o   Attend meetings and hearings on Capitol Hill

o   Work with other patient advocacy groups on current advocacy issues

o    Build communication, writing, and media skills - and much more! 
 
The deadline to apply is March 31, 2015. Go HERE for more information.

 
Upcoming Events
  

March is Hemophilia Awareness Month! Go HERE for more information! 

 

 

Virginia Hemophilia Foundation | P.O. Box 188 | Midlothian, VA 23113
804-740-8643 | www.vahemophilia.org