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National Hemophilia Foundation
The National Hemophilia Foundation is dedicated to finding better treatments and cures for inheritable bleeding disorders through education, advocacy and research.
Telephone: 212-328-3700
http://www.hemophilia.org

CFC Code: 12002
IRS EIN Number: 13-5641857
AFR: 15.9% What's this?

Dr Metz

As a physician, Dr. Richard Metz knows what it's like to be in a difficult situation. Yes, Michael, his son has hemophilia. Dr. Metz has witnessed firsthand the issues — medical and logistical — that come with the disease.

Yes, he's served on National Hemophilia Foundation board. He's seen the struggles and the triumphs of promoting interest in a condition that the public doesn't understand, or want to understand.





Thu, 29 May 2014

Adiós a los juegos de mesa. Llegaron los juegos de iPad y iPhone. Casi 75% de los niños menores de nueve años han usado un dispositivo móvil para actividades con medios de comunicación, como juegos, videos o aplicaciones, según un informe reciente de Common Sense Media, organización de presión sin fines de lucro.

Ahora puede aprovechar ese tiempo que sus hijos pasan ante una pantalla para que aprendan. Hoy en día, las aplicaciones pueden ayudar a que los niños progresen en todo, desde contar hasta leer. Pero controle el uso de aplicaciones. No permita que los niños menores de dos años usen dispositivos mediáticos. Además, limite el tiempo que pasan los niños mayores ante una pantalla a un máximo de dos horas al día, aconseja el Colegio de Pediatría de Estados Unidos. Este informa que existe una conexión entre tiempo excesivo ante una pantalla y los problemas de conducta e irregularidades del sueño. Por lo tanto, esté atento al reloj mientras sus hijos prueban estos divertidos juegos que a la vez educan.

Barefoot World Atlas

Aquí sus hijos aprenden sobre aproximadamente 100 temas, entre ellos animales, pasatiempos e incluso datos sobre diferentes culturas y costumbres. Los niños exploran el colorido globo terrestre de la aplicación al hacerlo rotar y agrandar la imagen de todo aquello que les parezca interesante. Pueden analizar fotos, oír descripciones de lo que ven y practicar lectura. Edades: 6+; $4.99.

Bugs and Numbers

Los animalejos ayudan con la aritmética a niños de edad preescolar a primaria. Los juegos tienen de fondo lugares que les pueden gustar a los insectos, como un hotel, una cafetería e incluso el circo. Los niños aprenden sobre fracciones con hormigas que cargan cajas de pizza. Los niños aprenden a contar dinero con un divertido videojuego. Los usuarios más pequeños pueden comenzar con juegos que los ayudan a identificar los números; los niños de primaria pueden hacer mediciones y dar la hora. Edades: 4+; $2.99.

Fri, 23 May 2014

In each issue of HemAware, we spotlight people in the bleeding disorders community. Here, we talk to Logan Eastburn-Hidalgo, 12, from Yardley, Pennsylvania. He was part of a team that broke the Pennsylvania YMCA State Swimming Championship record for freestyle relay in March 2014. He has moderate hemophilia A and type 1 von Willebrand disease.

When did you first develop an interest in swimming?

I have been in the pool at a local YMCA since I was 6 months old. Later on, my hematologist told me that swimming was the best sport for me because it would put less stress on my joints than those that involve running. This was especially important because I have had several bleeds in my ankles and knees. I took swimming classes until I turned 8 years old, when I joined a team, and I started competing when I was 10.

How often do you train, and what’s involved?

I practice three or four times a week for about two hours per day. We usually swim medium-distance sets [five 100-yard sets of individual medley, or freestyle, or freestyle and backstroke]. For warmup, we usually swim a couple of 400- or 500-yard freestyle sets, or a five-minute loose kick with a board. Each practice totals approximately 3,000 yards.

How do you think swimming has affected your bleeding disorder?

Swimming has made my hemophilia easier to manage because it strengthens my muscles and keeps me thin, which reduces the amount of pressure on my joints. Since I started swimming competitively, I have not had any major joint bleeds.

Do others on your team know you have a bleeding disorder?

None of the others on my team know, just because the subject has never come up. My coaches are aware of it, because my parents told them, but I don’t think they told anyone else. When we have practices on dry land, such as running and stretching exercises, I usually take it easy, and my coaches are fine with that.

How did you feel when your team broke the YMCA state record?

When I realized that my team had broken the Pennsylvania YMCA state record for the 200 freestyle relay, I felt that I had made a huge accomplishment. I was glad that my coaches had trained me and the rest of the Tri-Hampton YMCA 11–12 boys relay team so efficiently. I also felt that I could have pushed myself a little bit harder in order to bring our time even lower. We’ll try again in the long course season that begins in April and runs through August.

Some parents are worried about their kids with bleeding disorders participating in sports because of bleeds. What would you say to a kid who wants to swim like you do?

I can understand why some parents might be worried about sports, because I had an ankle bleed from running during a T-ball game when I was 5, and that was the last time I ever played. I’ve never had any joint bleeds as a result of swimming, possibly because I do my prophylaxis on Tuesdays, Thursdays and Saturdays before I train. Swimming also helps me maintain my weight, and I know that this will place a lot less strain on my joints. For a kid with hemophilia who wants to swim, I would say, “Get in the pool!”

Do you know an interesting individual we should profile in a ­future ­issue of HemAware? E-mail: january.payne@mcmurrytmg.com.

Fri, 23 May 2014

To be a successful advocate, you need key tools at your disposal, such as a way to voice your opinion clearly, as well as arguments and counter-arguments­. And, most important, you need access to people who can help you implement the changes you’re asking for.

Washington Days, the National Hemophilia Foundation’s (NHF’s) annual advocacy event, gives its attendees these very tools. This year’s meeting, which took place February 26–28 in Washington, DC, offered advocacy training and a full day of Capitol Hill visits, followed by a half-day workshop on state issues.

More than 300 members of the bleeding disorders community from 43 states gathered that Wednesday night for two training sessions: one for first-time attendees about what to expect and how to prepare for a meeting with legislators and another for all attendees, which offered in-depth coverage of the issues people would discuss at the following day’s meetings on the Hill.

The issues community advocates asked representatives to support were the Patients’ Access to Treatments Act of 2013 (H.R. 460). They also asked legislators to continue supporting federally funded hemophilia programs through the Centers for Disease Control and Prevention (CDC) and the Health Resources and Services Administration (HRSA) Maternal and Child Health Bureau.


William Addison explains to Sen.
Susan Collins (R-ME) how he
treats his bleeding ­disorder as
Jill Packard and Cabe, David
and Grace Addison observe.

Advocates stressed the importance of hemophilia treatment centers (HTCs) in the lives of people with bleeding disorders. Although the money that federal hemophilia programs receive is a tiny part of the overall budgets of the CDC and HRSA, these agencies’ budgets are cut nearly every year.

Nikole Scappe, from Coraopolis, Pennsylvania, told legislators firsthand what her HTC means to her. As an athletic child, she was treated for recurrent hairline fractures in her bones. “I think I had about 16 casts before I turned 13,” she says. “They assumed they were fractures because of the swelling.” After her mother sought an explanation for her own constant bruising, both she and Nikole were diagnosed with severe type I von Willebrand disease.

Being diagnosed and treated at her HTC made all the difference in Scappe’s life. She shared with her representatives the story of her hematologist looking at her old X-rays and telling her that none of them indicated fractures. Instead, the swelling was a result of bleeding. Advocacy training and being able to listen to “veterans” in her group made Scappe more confident as a first-time attendee.


NHF surprised David Cavenaugh
with the Community Champion
Award during training on
Wednesday, in recognition
of his years of advocacy for
the bleeding disorders community.

The Patients’ Access to Treatments Act of 2013, introduced by Reps. David McKinley (R-WV) and Lois Capps (D-CA), would bar insurance companies from designating specific medications as tier IV drugs. Most commercial health insurance companies separate drugs into tiers: tier I for generics, tier II for name brands and tier III for name-brand drugs not included in their formularies. Some insurers have created a tier IV for costly drugs, including biologics such as clotting factor. They require patients to pay co-insurance­—a percentage of the medication’s cost—rather than a flat co-pay. These co-insurance payments can range from 25% to 33% of the total cost of the drug, putting payment beyond the reach of most people.

Advocates at Washington Days asked their representatives to co-sign H.R. 460. When meeting with a senator, they asked him or her to consider introducing a companion bill in the Senate. After the NHF Hill day, five more representatives signed on to the bill, bringing the total to 94.


Rep. Lois Capps (D-CA) spoke
to the advocates Thursday,
emphasizing the importance of
telling their personal stories. For
her efforts on H.R. 460, she
received the Dr. L. Michael Kuhn
Award from Val D. Bias, NHF CEO.

“We want to make sure our people are as prepared as possible when they meet with their legislators,” says Michelle Rice, NHF’s director of public policy. Many of the issues the bleeding disorders community has advocated for in the past have been realized, including the passage of the Ricky Ray Act and the elimination of lifetime caps. With proper tools, the bleeding disorders community is proving to be a group of powerful advocates.

Fri, 23 May 2014

Hemophilia is often called “the royal disease” because of its connection to Queen Victoria and her descendants. That nickname was particularly apt on Tuesday, March 11, when Mary Elizabeth, Her Royal Highness Crown Princess of Denmark, met with families with bleeding disorders at a small reception at the Bryant Park Hotel in New York City.

Novo Nordisk, a Danish pharmaceutical company, arranged the event. Attendees included Christian Schønau, Lord Chamberlain; Tanja Doky, Lady-in-Waiting of the Royal Court; Jarl Frijs-Madsen, Consul General of Denmark in New York, Ambassador; Eddie Williams, senior vice president of biopharmaceuticals, Novo Nordisk; Val D. Bias, CEO of the National Hemophilia Foundation (NHF); Melissa Penn, president of the New York City Hemophilia Chapter; and additional staff members from the Danish Consulate, Novo Nordisk and NHF.


The Crown Princess meets
Christopher Ambrosio and
his brother, Connor, and
sister, Kelsey.

After Bias, Williams and Frijs-Madsen­ delivered introductory remarks, families affected by bleeding disorders from the New York City area were presented to the Crown Princess.

The event also celebrated the long partnership between NHF and Novo Nordisk. In January, NHF dedicated the opening of the NHF/Novo Nordisk HANDI library with a ribbon-cutting­ ceremony. Support from Novo Nordisk enabled NHF to digitize more than 13,000 articles about all aspects of bleeding disorders, which are accessible to the public through requests from HANDI.


(Left to right) Eddie Williams, senior
vice president of biopharmaceuticals,
Novo Nordisk; the Crown Princess;
and NHF CEO Val D. Bias. Novo
Nordisk coordinated the event, which
allowed local families to meet Her
Royal Highness.

“It was an honor to have Her Royal Highness Crown Princess Mary of Denmark visit with our community,” Bias says. “The Crown Princess has a deep commitment to furthering advances in public health both in her home in Denmark and around the world.”

Fri, 23 May 2014

Bills that come up for a vote in Washington, DC, often stall as they get defeated repeatedly on the US Senate floor. So it is refreshing to hear that the New York State Bleeding Disorders Coalition (NYSBDC got two bills passed in five years to help residents with bleeding disorders gain affordable access to clotting factor.

The most recent victory was in October 2013, when New York Gov. Andrew Cuomo signed bill A0962a/S2186a into law, which allows children on New York’s Child Health Plus (CHP) insurance plan to have their clotting factor covered for at-home use. When CHP was first implemented in 1991, clotting factor was only covered if it was administered in a clinical setting, such as a hemophilia treatment center (HTC) or a hospital.

“New York state was the only state in the US in which this provision was written into their CHP program,” says Tom Wilmarth, vice president of the Mary M. Gooley Hemophilia Center in Rochester, NY, and chair of the steering committee of the ­NYSBDC. New York state provided coverage for clotting factor regardless of how it was administered until the New York State Department of Health (DOH) issued a letter in 2006, stating that the law did not cover outpatient use. “That was when we saw coverage start to be dropped,” says Wilmarth. “We knew we needed to take action.”

But determining the appropriate response took some time. NYSBDC had numerous meetings with the DOH to explain the situation and discuss possible options. The DOH eventually told the group that new legislation was necessary to change the policy.

For the next three years, coalition members—including the Mary M. Gooley Hemophilia Center, the Hemophilia Association of New York, the New York City Hemophilia Chapter, the Bleeding Disorders Association of Northeastern NY, the Hemophilia Center of Western New York, the Bleeding Disorders Association of the Southern Tier, and all eight New York HTCs visited Albany to meet with legislators to push the issue.

“It wasn’t easy, because this wasn’t a fiscally neutral bill,” Wil­marth explains. “It was estimated at costing New York about $5 million.” But the coalition stressed the bill’s importance by having families come to show the impact of CHP’s policies. Because Medicaid covered home use, some families had one parent quit a job so they could qualify for the program. “When you have a family with a job opportunity that pays enough to get them off Medicaid, that should be a wonderful thing,” Wilmarth says. “But we had families who would refuse, because their son wouldn’t have access to his medication. That’s devastating.” The group also referred to studies that showed the long-term implications for people with bleeding disorders who do not treat prophylactically, and the impact that could have on the state.

NYSBDC found two sponsors for the bill: Sen. Joseph Robach (R-Greece) and Assemblyman Micah Kellner (D-Manhattan). The bill passed unanimously in October 2013. Coverage for home use went into effect April 1, 2014. The group experienced a previous victory in 2010, when it helped pass a bill that prohibited insurance companies from establishing a fourth tier for expensive medications, such as clotting factor. Tier IV drugs typically require coinsurance based on a percentage of the cost of the medication, which would make it too expensive for many people.

Wilmarth credits the strength of a united coalition as key to its legislative victories. While the various chapters and HTCs in the coalition worked to win over their individual legislators, at all times the coalition functioned as a team. “For the bleeding disorders community, this is a wonderful example of what a state can accomplish when it comes together and focuses on a single goal.”


The National Hemophilia Foundation is dedicated to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy and research.

Your support enables us to fund vital research and provide key educational programs and public policy initiatives to help people with bleeding disorders such as hemophilia and von Willebrand disease.

RESEARCH

  • NHF Career Development Awards promote research endeavors of established investigators and are awarded to scientists conducting basic, pre-clinical and clinical research. NHF has granted 23 Awards since 2000.
  • NHF/Baxter Clinical Fellowships exclusively sponsored by Baxter Bioscience is provided to physicians who are interested in the sub-specialty of bleeding disorders treatment. 24 fellowships have been awarded since 2003 and will provide the future of physicians caring for people with hemophilia.
  • Judith Graham Pool Postdoctoral Fellowships are awarded to scientists who have recently completed a doctoral, postdoctoral or residency training program. Their research is focused on biochemical and genetic aspects of bleeding disorders and provides funding to ensure the interest and future of researchers in bleeding disorders. 76 researchers have been awarded fellowships since 1972.

ADVOCACY

  • The state advocacy team has participated on various panels aimed at educating consumers and providers about the Affordable Care Act (ACA) and how it may impact those with bleeding disorders. These trainings reached consumers in more than 15 states, including but not limited to Indiana, Nebraska, Idaho, South Carolina, Texas, Florida, Washington & Oklahoma.
  • The NHF Insurance & Reimbursement Conference is designed to educate social workers and key insurance advocates about issues surrounding insurance and reimbursement in both the private and public payer markets. More than 55 participants attended this conference in 2011.
  • The state advocacy team created a "Personal Health Insurance Toolkit" designed to assist consumers in evaluating their health insurance options. The toolkit is comprised of a glossary of health care terms, Health Plan Comparison Guide, Health Plan Comparison Worksheet and a Personal Health Stat Sheet. The toolkit was rolled out to NHF chapter leaders at a series of regional trainings. 48 chapters were provided with training on the use of the toolkit.
 

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