New Baxter Program!
Baxter announces a new educational/scholarship program for all persons with hemophilia. The program is called EDUCATION ADVANTAGE and can be viewed at www.myeducationadvantage.com.
It will cover 4 areas; Educational Planning, Career Development, Health Management and Community Involvement. The program is geared toward 18-14 year old hemophilia A persons.
There is no requirement to use a specific brand of product.
Good News from Maryland!
A bill to guarantee insurance coverage for hemophilia care and access to Hemophilia Treatment Centers is being considered in Maryland. If you have friends or family there, please ask them to contact their State Senators to support Senate Bill 908 (aka SB 908) and their State House Representatives to support House Bill (aka HB 1127).
State & National Advocacy Groups Push for Groundbreaking Rx Reform Measures
Patients denied access to lifesaving medications urge passage of Nebraska bills at Feb. 16 hearing
More than a dozen state and national advocacy groups have joined Nebraska patients and healthcare providers to urge passage of two precedent-setting prescription protection bills. These laws would be the first in the nation to protect patients and their healthcare providers against unfair and restrictive insurer prescription practices. Their voices will be heard at a hearing 1:30 p.m. Tuesday, Feb. 16. Prior to the hearing that day, patients who can no longer afford or gain access to lifesaving medications will share their experiences at a rally and news conference at the State Capitol.
LB 1017 would combat restrictive insurance co-payments by ensuring that all health policies in the state include reasonable prescription drug benefits and limit the amount patients have to pay out-of-pocket for medicines their health providers prescribe. LB 1088 addresses the prevalent practice of patients being encouraged to switch to prescriptions that are similar to– but not the therapeutic equivalent of– the prescriptions their health providers ordered. Known as therapeutic substitution, the practice takes patients off medicines that work well for them and switches them to different medications that are less expensive, but not necessarily as safe or effective. For many patients, including those who will speak at the Feb. 16 news conference, no medically equivalent substitutes exist for their medications so they are forced to pay full price for their prescriptions or go without.
WHAT: News Conference in Support of Prescription Reform Bills LB 1017 and LB 1088.
WHEN: 11 a.m. – noon CT, Tuesday, Feb. 16, 2010.
WHERE: State Capitol Building, Room 1200, Lincoln, Neb.
[Note: Hearing will begin at 1:30 p.m. in room 1507.]
WHO: Alliance for Plasma Therapies; Local Patients and Advocacy Groups. Speakers will include:
- Sen. Abbie Cornett, who introduced both bills, and has heard from Nebraska patients who can no longer afford, or in some cases even obtain, the therapy they need.
- Michelle Vogel, Executive Director, Alliance for Plasma Therapies.
- Heather Overton, an epilepsy patient who has been forced to sue her insurer to obtain the medicine she needs to prevent seizures that routinely send her to the hospital.
- Polly Negrete, a former nurse and hospital manager, who has primary immune deficiency disease and motor neuron disorder. At one time, she paid $10,000 each year for just one medication and still must pay hundreds each month out-of-pocket despite being on disability.
- Lynette Anthony, an Omaha worker, whose insurer abruptly switched medication needed to control a serious skin disease from one co-pay tier to another. Instead of being 90 percent covered, she now pays $300-$400 a month for treatment.
- Carl Clark, president of the Nebraska Chapter of the National Hemophilia Foundation. His son, who has hemophilia, has seen his drug co-pays rise from $35 to more than $100 for medications needed to fight Hepatitis C acquired from a contaminated blood-clotting product.
NHF Call For Nominations
(Download following as PDF)
Hemophilia and Haiti
NCHS has been concerned about the situation in Haiti, and how it affected the hemophilia population there. We contacted the World Federation of Hemophilia, and this was their response:
"What we did so far is we asked Heidi, President of the Dominican Republic Hemophilia Association (other half of the island) if she knows anything about the need for hemophilia treatment products (Humanitarian Aid) in Haiti. She replied that although thousands of refugees are rushing into Dominican Republic, there were no people with bleeding disorders among them, so there was no need for any product donations yet. Please note that unfortunately WFH does not have contacts in Haiti (no record of people with hemophilia) and there is no registered Hemophilia Society.
"Talking to Project Share (Laurie Kelley) recently, they also confirmed that they have no current records of people with hemophilia in Haiti."
NCHS will keep you posted on any further developments.
Walk A Thon Site is Live!!
This year the Hemophilia Foundation of Northern California is pleased to be participating in NHF's Walk program.
Launched in 2008, the Hemophilia Walk is a nationwide event that raises funds and awareness about hemophilia and other bleeding and clotting disorders. Participants raise money, locally and nationally, for crucial research, advocacy and education by joining together in a fun and festive event.
On April 17, 2010 at Cesar Chavez Park in Berkeley CA walk teams will be participating in our First Annual Walk A Thon. Take a look at our walk information site for more information about how to pledge, join a team or create a team.
Now is the time to get your teams started and join us for what looks to be a fantastic and fun event! I've already started my team and raised some funds :-)
If you have any questions please don't hesitate to contact me, I am the Regional Walk Manager and eager to help in any way that I can.
Thank You!
Nancy Trunzo
Regional Walk Manager/Office Administrator
Hemophilia Foundation of Northern California
510-658-3324 office phone
nancy.trunzo@hemofoundation.org
