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It's time for...a week in the woods
Help a kid be a kid...give them the gift of camp! Click this link - http://www.doublehranch.org/campsponsor08.htm - to sponsor a child to attend the Double H Ranch summer camp.
Hemophilia Walk 2008. set for June 1st
Please join us for Hemophilia Walk 2008 and participate in our fun and festive event. Proceeds will support NHF and our chapters, and raise awareness about the bleeding and clotting disorders community. Your support is greatly appreciated! For details, go to http://www.hemophilia.org/walk/NY.html.
A Woman's Retreat On The Hill April 25-27, 2008
Josephine Droney will be participating in this event, an educational retreat for women in in families with vonWillebrands Disease. Please contact the Delaware Valley Hemophilia Chapter to register-885-6500.
Josephine named Counselor In Trainin
Josephine is honored to be chosen a counselor in training (CIT) @ Double H - Hole In The Woods camp, founded by actor Paul Neumann.
Double H- is a camp where chronically ill children go and enjoy a week of fun filled activity http://www.doublehranch.org
National Heart Lung and Blood Institute Guidelines
National Heart Lung and Blood Institute Guidelines for vonWillebrands can be found at: http://www.nhlbi.nih.gov/health/temp/vwd/
Hey SRF Supporters
"Shelby Richter Fund, Inc. 4th Annual Fundraisr" coming up March 17, 2006 at Rifici's in Absecon, NJ. This year along with the mail in ticket purchases, we are also accepting email purchases from our web site ( www.ShelbyRichterFund.org ) We have set it up so that you will have tickets waiting for you at the door, under "Your Name". To date we have donated $90,000 to the SFA, and $27,000 in student scholarships. Please help us continue to help find a cure and/or treatment for "Undiferentiated Sarcoma".
Villinova University Blood Donation Awareness 2/20/2008:
Josephine will be at Villinova University on Feb 20, 2008 to help raise awareness for blood donation with the American Red Cross. Blood donation helps ensure that everyone has access to blood in times of need.
Charitable Giving That Makes a difference:
This Holiday Season, Patrick & Josephine would like suggest the Heifer International Foundation for your charitable giving. Your gift could feed a family and their children and their childrens' children. Donate today at www.heifer.org.
PATRICK DRONEY Signed Record Deal
Patrick Droney has signed a recording contract with REFORM Records and will be releasing his Debut LP in early 2008. Be sure to check the Reform Record's myspace page for release information: www.myspace.com/reformrecordsusa.
National Hemophilia Foundation 59th Annual Meeting:
We look forward to having you join us for the journey at the Orlando World Center Marriott Resort from Thursday, November 1, to Saturday, November 3, 2007. For full details click here.
HB 1105 Standard of Care ACT NEEDED in Pennsylvania
All patients with bleeding disorders need access to a few basic things:
1. Access to medicine and factor replacement therapies (factor products).
2. Access to our designated hemophilia treatment centers in Pennsylvania. There are seven of them now, with the closing of The Reading Hospital Hemophilia Program this year.
3. Access to the coagulation laboratories connected to our seven hemophilia programs where we get our blood work one right, the first time.
4. Access to options in pharmacy and home supportive services, in case we need more than just our medicine or factor.
There’s a fifth point of HB 1105, which has to do with screening women who may potentially have a manageable bleeding disorder, prior to a physician recommending a hysterectomy. We’ll get to that later.
On the first four points of HB 1105
We surveyed the seven hemophilia programs in Pennsylvania and asked the program staff to
outline some real examples of problems patients are having. Here are a few of the hundreds of examples submitted by the centers:
- A 26-year-old patient with severe VWD. Insurance will not pay for factor to use at home. Must go to the ER when he needs factor.
- A 53-year-old male with moderate hemophilia required surgery. 1. Insurance did not allow for full-service homecare. It was difficult to find a visiting nurse agency that would administer the patient’s factor product which was supplied by an outside pharmacy. 2. In-home lab arrangements were made with the insurance approved lab. Coagulation samples were sent to the Florida lab. Results were not available for at least 48 hours. This caused a delay in making medication adjustments. 3. The specialty pharmacy supplied the Sharps container but would NOT make provisions for the proper
disposal of the contaminated supplies.
- A 25-year-old patient with severe hemophilia. Insurance company requires that this patient use an outside lab for his blood work. Four times in the last year, the results came back“no evidence of a bleeding disorder.” Patient has had hemophilia all of his life.
- A 27-year-old pregnant woman was tested by an outside laboratory, not connected to one of our state-recognized hemophilia programs, and she was given a diagnosis of possible factor VIII deficiency. Confirmatory testing at the hospital coagulation lab was negative, but because of the original results from the outside laboratory, it was necessary to re-test this patient and family members several times, and genetic analysis was also required to evaluate for hemophilia carrier status. Extremely costly. In addition, the baby boy was not circumcised because of the possibility of a bleeding disorder diagnosis. The baby was repeatedly tested. The erroneous original result from the outside laboratory unnecessarily complicated the proper evaluation and also INCREASED the costs for the insurance company.
- A 54-year-old female with moderate hemophilia on home infusion therapy suffered a hip bleed. Only a limited amount of the patient’s prescribed factor VIII replacement product was authorized by the insurance company. Continued treatment with the medication required a progress report every 48 hours, before further authorization of additional medication shipments would be given. Insurance company would not allow adequate supply of factor at home. This interfered with implementing standards of care practice for treating a bleeding episode in a patient with hemophilia.
- A 17-year-old patient with hemophilia. Insurance will not allow blood work to be done in the coagulation lab at the hospital. The results from the outside laboratory are often inaccurate, and there is an unreasonable delay in getting test results.
- A 30-year-old patient with severe hemophilia and a high titer inhibitor needs an adequate supply of factor at home to be safe. Insurance will not allow him to have more than 5 doses at one time shipped to his home. His co-pay must be paid for each shipment of 5 doses, and there are instances when he has NO factor at home.
- A 23-year-old patient with severe hemophilia. His new insurance company rejected his claim for the payment of factor. Reason stated at the bottom of the denial and signed by the insurance company medical director: “authorization is denied because factor VIII is not indicated for the treatment of hemophilia.”
- A 33-year-old male with hemophilia who can self infuse at home. Insurance company denied factor for use at home. Reason for denial: Patient must be infused by a home infusion company or in a facility. Factor products should not be self-administered.
- A 42-year-old male with severe hemophilia. Insurance only covers the cost for factor if he is at a facility. Factor at home must be paid for out-of-pocket.
- A 55-year-old patient with hemophilia. Insurance will not pay for factor to be administered in his home. He must go to the ER or to an out-patient treatment area when he needs factor. He is losing his job because of too much time lost from work.
- An 11-year-old patient with hemophilia. Insurance will not allow patient to receive a certain brand of factor prescribed by his physician, even after the hemophilia physician wrote a letter of medical necessity. The insurance company has a -preferred product for the treatment of hemophilia.
- A 48-year-old patient with severe hemophilia. His insurance required him to switch to a mail order pharmacy chosen by the insurance company. The pharmacy does not always ship the correct supplies and in the amount prescribed by the hemophilia physician.
- Several patients at our treatment center have had to change their home care pharmacies and are now required to use the pharmacy owned or designated by the insurance company. These patients also cannot have laboratory studies or receive treatment at one of our state-recognized hemophilia programs. We have been unsuccessful at getting an out-of-network referral. Denied each time.
- A 43-year-old patient with severe hemophilia was switched by his insurance company to the pharmacy owned or designated by his insurance company. He treats on demand and needed factor urgently because of a significant bleed. It took the insurance company pharmacy one week to deliver factor, despite many phone calls. Before delivery, this patient ended up in the ER and was then admitted. All of this could have been avoided had he received factor promptly!
- A 15-year-old female complained of bruising and heavy menstrual periods. Her brother has severe factor VIII deficiency. Her insurance would not allow proper coagulation studies done at the hospital. Lab studies were referred to a large pharmacy not connected to a state-designated hemophilia program. She was erroneously diagnosed as a symptomatic carrier for four years. Activities were restricted, education was provided, and then further studies were completed by the hospital coagulation lab. On two samples, she was found to have perfectly normal factor VIII levels. She is not at risk for bleeding, she is not a symptomatic carrier, and the anxiety and confusion she and her family experienced could have been avoided by allowing the use of a specialized coagulation lab connected with a local hemophilia program.
- Ongoing laboratory issues for our hemophilia program: we have blatant and repeatedly incorrect coagulation test results from outside laboratories. If followed, this could have life-threatening consequences for our patients.
- We also have at least one referral a month for a patient who has a potential bleeding or clotting disorder diagnosis, but it is a laboratory issue and not a patient issue. We are having trouble with four insurance companies at this time regarding the issue of obtaining approval to use our own coagulation laboratory to perform necessary blood tests.
These are real examples of why we must obtain passage of the Hemophilia Standards of Care Act!
On the fifth point of HB 1105
According to the National Hemophilia Foundation (NHF) and The Centers for Disease Control and Prevention (CDC), more than 30,000 unnecessary hysterectomies are performed in the United States each year due to undiagnosed bleeding disorders in women. Women should be screened for a possible bleeding disorder prior to a physician authorizing a hysterectomy or other invasive procedure when a woman presents with menorrhagia (excessive menstrual bleeding). Bleeding disorders require medical management, not potentially unnecessary surgery. Women with bleeding disorders need unrestricted access to the comprehensive care model provided by Pennsylvania’s state-recognized hemophilia programs.
In December 2001, The American College of Obstetricians and Gynecologists issued recommendation 263, von Willebrand disease in Gynecologic Practice. This recommendation calls upon OB/GYNs to refer a female patient for proper screening for bleeding disorders such as VWD prior to performing a hysterectomy, when the woman has symptoms of excessive bleeding.
Art Stinger Tribute
Patrick and I want to thank Art Stinger and Sue Stinger for helping us and caring about us. hemophiliasupport.org .
Thank You!
Thank you for supporting Alex's Lemonade Stand! If you would like to learn more, click on the following link: Alex's Lemonade Stand Foundation - Alex's Alex's Lemonade Stand '07, At it again!
Why Todd Beamer?
On Sept. 11, 2001, Todd Beamer and the other passengers and crew members aboard United Flight 93 proved that everyday people can make extraordinary heroes. Todd will long be remembered as the American hero who said ‘Let’s roll’ as he and others attempted to take down their hijacked plane, preventing it from becoming another weapon of mass destruction.
But what many may not realize is that Todd Beamer was a hero even before the terrorist attacks, according to his friends and family. Every day he made choices to better himself, his family and those whose lives he touched at work and in the community.
This everyday heroism is the motivation behind Heroic Choices’ resiliency-building program for children and their families who suffer from trauma. We help them believe in themselves by making their own heroic choices every day, big or small, so they give themselves the best chance for a better tomorrow.
About Todd Beamer
At only 32 years old, on the morning of Sept. 11, Todd was a devoted husband to Lisa and the proud father of two sons, with another baby on the way. He was a successful businessman, working in sales for Oracle, the second largest computer software company in the world.
But more importantly, Todd loved children and showed it as a devoted father, Sunday school teacher and youth group leader. "He especially felt called to help children and would specifically seek out those in the youth group who seemed to need more personal attention and lend a supportive hand," said Lisa.
"Todd believed that if children were taught how to make the right decisions in life, they would build their own character, faith and courage and be able to handle any situation that came their way," she added. That’s also called resiliency and resiliency is what Heroic Choices builds in children. Todd was given the right tools in life to be resilient and in return, did his own part to develop that same attribute in his children and any child he had the opportunity to influence.
It was this belief and passion that inspired the mission of The Todd M. Beamer Foundation. In a way, Todd was setting the groundwork for Heroic Choices and our mission to build resiliency in children and equip them to make heroic choices every day.
It was the generous contributions of individuals and businesses, inspired by Todd’s actions that provided the resources to start Heroic Choices. This generosity continues today and we are grateful for the thousands of individuals, corporations and foundations that support our work.
Savannah Update 08/19/07:
As mentioned previously, the Savannah wheelchair benefit was a huge success. We recently received this update.
Josephine & Patrick on follow-up Montel Show Today (06/25/07):
The Montel Show is a follow-up show for "Kid's Making a Difference" (originally aired 10/2006) with Josephine and Patrick. (check local listings for times & channel).
http://www.montelshow.com/show/detail/4992/
Josephine selected for University of Richmond Scholars:
Josephine was selected to participate in the University of Richmond Summer Scholars Program. She was one of only 22 students from around the nation selected to participate in this pre-med program.
Hill's Cafe Benefit for Savannah:
The Wheelchair benefit for Savannah was a big success. Here is a picture from the event (Patrick, Max Butler, Jim Sennette and Todd Giblin with Savannah). Josephine and Patrick Droney worked to help raise funds for Savannah's wheelchair access. Patrick performed at the benefit, on June 10, 2007 at Hill's Cafe in Austin, Texas. For donations, please make your check payable to:
SAVANNAH L SAMUELS PATIO BUILDING FUND, Tx Acct.
...and send it to the Bank Trustee at the following address:
Bank Of America
1701 Directors Blvd.
Suite 100
Austin, TX 78744
Josephine Droney, Main Speaker at the 2007 Red Cross Volunteer Awards:
At the 2007 Red Cross (Penn-Jersey Chapter) Volunteer awards ceremony, main speaker, Josephine Droney explains the importance of blood donation and how it saved her life. Click here to see a snapshot.
Celebrity Blue Jeans for Genes Autcion:
Click here to bid on celebrity autographed jeans and other items to benefit the National Hemophilia Foudation. Auction ends 3/30/007.
"2006 Spirit of Women" Youth Award:
Josephine Droney has been named the "2006 Spirit of Women" for AtlantiCare Regional Medical Center. To find out more about the "Spirit of Women", visit their website at www.spiritofwomen.org.
Hugh O'Brian Youth Leadership Delegate for Mainland Regional High School:
Josephine Droney has been named the "Hugh O'Brian Youth Leadership Delegate" for Mainland Regional High School. To find out more about Hugh O'Brian Youth Leadership, visit their website at www.hoby.org.
Josephine and Patrick will be traveling to Montreal in Febuary to meet with World Federation Hemophilia:
Check back for more information about this event.
Patrick & Josephine on Montel Williams:
Patrick and Josephine will be appearing on the syndicated Montel Williams Show on October 23, 2006 (taped 10/11/06). Check local listings for times and channels. They were asked to be guests on the show to speak about their philanthropy and Patrick's music.
Patrick & Josephine in the AC Press October 23, 2006:
Click here to view the article.
Family Shares Blood Disorder, Spreads Awareness:
NBC 40 News Story: Click Here to view story.
Patrick Droney opens 58th Annual National Hemophilia Foundation Conference - October 13, 2006:
Alan Kinniburgh, CEO of the National Hemophilia Foundation presented Patrick & Josephine with the National Hemophilia Advocay Award for: Oustanding Service in Creating Awareness for People with Bleeding Disorders. Josephine participated in the meeting and Patrick opened the conference with his band. Visit his webiste, PatrickDroney.com to learn more about his musical talent.
New Jersey Youth Makes First Donation to Heritage House:
Josephine Droney, a fifteteen year old freshman at Mainland Regional High School in Linwood, New Jersey has made the first donation to the Robert Johnson Foundation's new Heritage House. Her $500.00 check will open a checking account to help with the launch of the new pilot program for the 2006-2007 school year. Aimed at reducing high school dropout rates in the Hazlehurst School District, the program will offer arts, social skills, and other youth development opportunities.
Janet Schriver, Executive Director of the Robert Johnson Blues Foundation, said of the award, "I can't think of a better way to start our fundraising efforts. This young woman is an international role model. She's demonstrated that she knows how to help others. She's an active volunteer for Project Red Flag-National Hemophilia Foundation, an educational initiative for women to get early diagnosis and treatment and co-founder of Community Service Birthday Parties. These being only a couple among many worthwhile causes she supports. As a recipient of the Nestle Very Best in Youth Award in 2003 and many other community service awards, she has proven herself as someone who knows what's important. We're honored to receive this donation from Josephine."
Ms. Droney received these funds on June 14, 2006 as an award for outstanding community service from the Soroptimist International of Atlantic City. This prestigious organization is an international volunteer service organization for women in business, management and the professions. Its membership is nearly 100,000 women in 120 countries throughout the world. Recognition from this organization is an honor to be treasured for a lifetime.
Another recent award received by Ms. Droney is the Spirit of Women Award for a youth age 12-18. This award is given to a young woman who gives back to the women in the state New Jersey. She also recently received the Prudential Spirit of Community Award Distinguished Honoree from the state of New Jersey.
"What a moving experience. Josephine called me to let me know about her gift. It really touched my heart. We had no idea that Josephine would do something like this. She found out that we needed to raise $10,000 to get our fall program up and running," Steven Johnson commented.
When asked how he knew Josephine, Steven replied, "She's the sister of our Next Generation Award Winner, Patrick Droney. We give this award every year to an outstanding young artist and Patrick was this year's winner. I tell you, this family is remarkable. Both these kids have a rare bleeding disorder called von Willebrand's disease and they've been through more than most adults. But, they just keep on giving. Patrick is only thirteen and was just signed with the House of Blues. Already he's opening for people like James Brown. Besides, he was the Nestle Very Best in Youth Award winner in 2005 and serves on the Very Best in Youth Board of Nestle . What a tribute to the youth of Hazlehurst to have these two in their corner."
Recent Accomplishments:
-Patrick was appointed to the board of the Nestle Very Best In Youth Foundation.
-Patrick is also on the advisory board of the Robert Johnson Blues Foundation - Heritage House.
-Josephine and Patrick were awarded the National Hemophilia Advocay Award by Dr. Alan Kinniburgh , CEO of the National Hemophilia Foundation.
Please wear an ID bracelet! They save lives!
Coming Soon: How to plan your Community Service Birthday Party!
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