CMS Announces Separate Add-On Payment of $0.14 for Clotting Factor (top)

NHF Remains Concerned about Medicare benificiary access to care due to the tremendous burden of the 20% copayment that is still required of these individuals.

The Centers for Medicare and Medicaid Services (CMS) announced on

The establishment of a separate payment for clotting factor was required under the Medicare Prescription Drug, Improvement and Modernization Act of 2003 (MMA). Under MMA, beginning in 2005, Medicare payment for all Part B drugs, including clotting factor, will change from 95% of average wholesale price (AWP) to average sales price (ASP) plus 6%. CMS expects to release the 2005 ASP-based payment rates for Part B drugs in a few weeks.

“Clearly, the $0.14 per unit is a significant improvement over the $0.05 per unit included in the proposed rule issued earlier this year,” stated National Hemophilia Foundation President Richard Metz, MD. “However, NHF remains concerned about Medicare beneficiary access to care due to the tremendous burden of the 20% copayment that is still required of these individuals.”

In its comments on the August 5, 2004, proposed rule, NHF called for CMS to seek ways of reducing the impact of the 20 percent copayment requirement on Medicare beneficiaries with bleeding disorders.

The announcement was included in the 2005 final physician fee schedule rule, which will be published in the November 15, 2004Federal Register. The rule is available now on CMS’ Web site at http://www.cms.hhs.gov/regulations/pfs/2005/1429fc.asp. CMS is accepting comments on the final rule until January 1, 2005.

For more information about blood safety, visit the NHF Blood Safety Update session at 11:30AM on Friday or read the story in Saturday’s NHF Annual Meeting Daily.

Medical Precon Discusses Research on Women’s Bleeding Disorders (top)
By Deb Nerud, BS,MLS, NREMT-P

Leading medical researchers and practitioners in the area of women’s bleeding disorders were featured at the Medical Preconference: Toward Consensus on Diagnosis and Management of Women with Bleeding Disorders Thursday.

Nicole Dowling, PhD, opened by discussing the prevalence of women who have menorrhagia. Menorrhagia or the problematic disorder of heavy menstrual bleeding, appears to occur in 5-10% of the female population or about 62 of 1000 women.

According to a Centers for Disease Control and Prevention (CDC) provider study of OB/GYN’s in Georgia, 3% of those surveyed felt that von Willibrand disease (VWD) could be a factor in menorrhagia. Dowling contrasted this study with a separate study of 123 women with menorrhagia and 123 control cases, which revealed that in fact 6.5% had VWD and a total of 11.3% had some type of bleeding disorder. “This is more prevalent than the less-than-1% perceived by most GYNs,” stated Dowling.

A telephone survey of 75 women seen in HTCs revealed that 86% of those women reported a history of menorrhagia.

Claire Philipp, MD, restated that bleeding disorders are common in women with menorrhagia. She stated that a significant number of these women have a history or family history of diagnosed bleeding.

Joan Cox Gill, MD, explained the diagnosis of VWD. VWD characteristics include platelet adhesion, platelet aggregation, and fibrin clot formation. Specific von Willebrand factor (VWF) assays include VWF Antigen (VWF:Ag), Ristocetin Cofactor (VWF:RCo) and Collagen Binding Assay.

Modifying factors in diagnosis of women’s bleeding disorders were described by Connie Miller, PhD. “Physiologic modifiers of VWF include ABO blood group, age, race, estrogen levels and pregnancy,” stated Miller. ABO impact of diagnosis accounts for 20% of the total variance in VWF and acts primarily on VWF, not factor eight. ABO antigens are present on VWF and react with antibodies.

Pathologic modifiers are defined as any physiologic changes including inflammation, vascular damage, malignancy, autoimmune disease, etc. Genetic modifiers include ABO blood group and VWF cleaving protease.

Jorge DiPaolo, MD, summarized three cases and the correlation between laboratory tests and symptoms.

The role of the community hematologist for the woman with a bleeding disorder was presented by J. David Bessman, MD. Bessman described a study done in Galveston, TX, which showed that 1% of ambulatory males had an iron deficiency while 7% of ambulatory females in the menstrual era had an iron deficiency. “The 6% difference is the definition of menorrhagia, not the symptomatic bleeding.”

Dental needs and the correlation between periodontal disease and systemic disease was addressed by Karen Ridley, RDH, MS. She stated that anyone with a bleeding disorder needs to have dental prophylaxis every 3 to 4 months and needs to be in compliance with dental hygiene to have a healthy mouth.

“Women need to understand that gingival bleeding is not a result of a bleeding disorder. They need a strict regimen of tooth brushing, minimally twice daily, two to three minutes at a time,” stated Ridley.

Andra James, MD, MPH, explained that bleeding disorders manifest in ways other than menorrhagia. “Menorrhagia is not the only reproductive problem women face,” she said. In a study of 102 women in HTCs with VWD, ovarian cysts occurred in 52% of the group compared with 22% in the control group. “Ovulation may result in bleeding or hemorrhagic ovarian cysts,” said James.

Endometriosis occurred in 30% compared to 13% in the control group, fibroids in 32% compared to 17% in the control group, and hysterectomy 26% compared to 9% in the control group. Postpartum hemorrhage, an anticipated problem, occurred in 59% of the women compared to 21% of the control group.

One patient’s journey was shared by Irene Vlaskamp. She spoke about her emotional moments with VWD. As a child she had frequent nose bleeds and as a 12-year-old she began her menstrual periods. She remembered being embarrassed about having to go home early from school when she bled through her clothes. She became anemic at age fourteen and was often fatigued in college. “It’s humiliating and stressful to say the least,” said Vlaskamp. “I feel weak and judged when I have to miss work for this reason.”

She related the relief she felt when she finally had a diagnosis for her condition and the frustration she feels now in trying to get needed appointments with physicians and the impact that VWD has had on her personal and work life.

The preconference session continued with descriptions of the HTC’s role in working with chapters to increase referrals of women, treatment options for women with menorrhagia and bleeding symptoms in hemophilia carriers.

This Morning’s Opening Session Features Distinctly Dallas Flair (top)

Join us from 9:30-11:00AM in the Landmark Ballroom AB as the 56 th Annual Meeting officially opens with the Wildcat Wranglers.

These young dancers energize audiences from coast to coast with show-stopping routines you won’t soon forget. The Wildcat Wranglers from Dallas’ Lake Highlands High School are a true Texas tradition; their performances include opening ceremonies for the US Figure Skating Championships and Dallas Cup Soccer, Disney World, halftime shows for the Dallas Cowboys and Mavericks, and now the NHF Annual Meeting.

This energy will carry through our opening welcome from the 56th Annual Meeting co-chairs, and the summary state of the union address from NHF’s president, Richard Metz, MD. The keynoters are three community members who represent different generations sharing a brief synopsis of their lives. You will also love the emcee — back by (overwhelmingly) popular demand.

Sponsored by American Red Cross. (Traducido en Espanol —excepto el baile que es universal)

Data Collection Critical for HTC Studies (top)
By Emily Clark

Since May of 1998, more than 15,000 people with bleeding disorders have been enrolled in a Universal Data Collection (UDC) study, according to two representatives from the Centers for Disease Control and Prevention (CDC). More than 11,000 of those participating are hemophilia patients, representing 90% of those using designated hemophilia treatment centers (HTC).

Although funding remains a major and ongoing issue, research continues to identify and track the major problems associated with hemophilia. This was the conclusion of several speakers at Thursday’s meeting for staffers at federally funded HTCs. The meeting addressed issues related to funding, policy and surveillance activity at the CDC and the Maternal and Child Health Bureau (MCHB).

According to Sally Crudder, acting director for the CDC’s National Center on Birth Defects and Developmental Disabilities, Division of Hereditary Blood Disorders, this CDC division has been reorganized into new divisions to enhance the efficiency and results of new studies.

Mike Soucie, PhD, an epidemiologist for hemophilia surveillance at the CDC, said that, as of a 1994 study, there are about 17,000 hemophilia patients in the United States, 67% of whom receive care at an HTC. These studies are finding that hemophilia patients who use HTCs are 40% less likely to die or be hospitalized due to hemophilia complications. Additionally, the UDC study found no new infections among participants, which CDC officials called reassuring in terms of recombinant product safety.

The hemophilia surveillance system began as a six-state project from 1993-1998, and a thalassemia group was begun in 2003, Soucie said. The study also includes a minimal data set on causes of death and tracked mortality rates at HTCs from 1998-2003 based on a number of risk factors.

Soucie pointed to several other studies underway in areas such as risk factors for chronic renal disease and for surgical procedures in the hemophilia population. He noted that a serum bank has been established and that hepatitis testing will be carried out at CDC labs, leading to a faster turnaround in results. He also noted that blood safety studies and joint studies are underway, as well as studies of overweight/obesity in the hemophilia population.

“Eighteen percent of the teenage hemophilia population is overweight, compared with 11.5% of the population in general,” Soucie said. “No one knows the cause, but we are studying the subject using body mass index (BMI) and working with the CDC’s Division of Nutrition and Physical Activity to develop interventions in the hemophilia population.”

The CDC is undertaking a mapping project to track the hemophilia population, Soucie said, using sophisticated geographic information systems to identify underserved areas of the country vis a vis the proximity of HTCs.

Other studies include collecting data on babies and a patient tracking system using automated e–mail to collect data and submit forms electronically. Soucie also pointed to a public/private collaboration with manufacturers for a pilot study of post-marketing surveillance for inhibitors. Currently, he said, the CDC is coordinating data for centralized inhibitor testing, and ten HTCs have been selected for a pilot program to collect data for hemophilia gene testing at the CDC.

“This is an opportunity to show the industry that we can collect information on important questions,” Soucie said, adding that he is hoping for more funding from manufacturers.

Crudder noted that clinical research efforts will help develop prevention and intervention messages to promote behavior changes, and she said that the CDC is looking for increased participation in the HTCs in collecting data and monitoring results.

Jack Arner, MPH, MPA, public health analyst in the genetic services branch of the MCHB noted that there are 12 regional hemophilia projects underway to provide quality healthcare access to low income, uninsured and special needs populations. He emphasized the need for family and consumer participation in delivery of services, as well as a revised grant application form to help achieve access goals.

“Consumers know a lot about what kinds of services are needed, how they’re delivered and what the problems are,” Arner noted, adding “I wish we had a lot more money to meet our goals.”

Annual Meeting Q&A:
As a provider, what do you think is the biggest challenge facing the bleeding disorders community? (top) 

Maribel Johnson, RN, MA
Seattle, WA

“Inhibitors and the complexity of the treatment regimen are huge challenges. Sometimes there is no treatment, and treatment plans that work with other patients are not available to help inhibitor patients.”

Madhvi Rajpurkar, MD
Detroit, MI

“The biggest challenge is the heterogeneity of the population. You can’t provide the same treatment to every person. What you do for one person will not be the standard of care for everyone else.”

Marilyn Manco-Johnson, MD
Detroit, MI

“Embracing a healthy lifestyle and making that a habit takes a lot of investment of effort and time.”

Ellen White, RN, BSN (on left) and Ann Barolemeo, RN

Ellen White, RN, BSN
Newark, NJ

“Acceptance. Making the disease just a part of their lives instead of their whole life. Moving on and overcoming the diagnosis by going to a treatment center and meeting other families. There’s lots of support out there.”

Ann Bartolomeo, RN
Farmington, CT

“I think patients need to be empowered through education. I always tell patients to get involved with local consumer groups and treatment centers.”

Who the Heck is Ehlers Danlos Anyway? (top)

On Friday evening, one of NHF’s sessions is entitled “Ehlers Danlos.” According to the Ehlers-Danlos (ED) National Foundation, it’s an inherited connective tissue disorder characterized by joint hypermobility, skin extensibility and tissue fragility.

NHF’s Physical Therapy Working Group (PTWG) requested a presentation on ED, as there are forms of the disease that have bleeding disorders as a component and many physical therapists and doctors are being asked to evaluate patients exhibiting these problems.

Margaret Heisel Kurth, MD, co-director of the hemophilia and thrombosis center at Fairview University Medical Center in Minneapolis, will speak. She is one of the most knowledgeable physicians on diagnosis and management of ED in the NHF community. Susan Konzal, PT, from Los Angeles Children’s Hospital, will also be speaking, as will Roshni Kulkarni, MD, of Michigan State University’s Department of Pediatrics and Human Development.

In addition to the interest by the PTWG, an NHF consumer that has ED and von Willebrand disease contacted Ruth Mulvany, PT, the chair of this year’s Annual Meeting and recommended the topic as well.

Prevention and Treatment Strategies for Early Joint Disease Discussed at Thursday Session (top)
By Deb Nerud, BS, MLS, NREMT-P

Prevention and Treatment of Early Joint Disease in Hemophilia was the focus of a Thursday morning session led by moderator George R. Buchanan, MD. He introduced the speakers by stating that whether one is in favor of prevention techniques or synovectomy, “the goal is the elimination of arthropathy.”

Marilyn Manco-Johnson, MD, described the rational for infusion therapy as being the prevention or decrease of the number of joint hemorrhages a patient would experience to prevent joint damage. Venous access, an effective infusion schedule and adherence to schedule are needed in order for prophylaxis to be successful, she said.

Janna Journeycake, MD, discussed prophylaxis in young hemophilia patients and the barriers to benefits. Risks include an increased potential for transmission of pathogens, the possible development of inhibitors and the need for adequate venous access.

Journeycake described the possible complications involved with central venous catheters including infection, thrombosis at the tip or in deep vein, hematoma at the site of port, fear in the child to venipuncture and the reliability of factor inhibitor assays drawn through the catheter.

“This must be balanced by the quality of life, productivity of the individual and other medical complications,” stated Journeycake.

Amy Dunn, MD, described synovectomy for early target joint disease. She contrasted arthroscopic and radionuclide synovectomy. A study in Dallas showed that the arthroscopic procedure showed bleeding rates declining significantly, even after three years with improved range of motion in 71% of joints. A study in Montreal looked at 29 patients and 38 joints that received radionuclide injections. Bleeding declined in most joints, 73% of patients reported less pain, 23 of 29 reported worsening and 11 patients reported bleeds.

Catherine Manno, MD, spoke about the risks and benefits of synovectomy. Cost was a factor in open as well as arthroscopic synovectomy. Risks of radionuclide synovectomy included skin burns or injections resulting in intense inflammatory response. Reduction of pain and improved function were listed as benefits.

Do the 5! Turns 5 (top)

A unique panel of chapter staff and consumers will honor the five-year anniversary of the Do the 5! campaign this afternoon at “National Prevention Program (NPP) Report-Out” from 12:00-1:00PM in Pryor AB.

Rebecca Brodsky, MPH, and Ann Marie Nazzaro, PhD, will moderate the discussion about creative chapter programs you can start in your community. Program successes and suggestions for modifications will be shared in an interactive session. Highlights include invigorating community participation and easy-to-do program evaluation techniques that will allow you to monitor the success of your project.

Featured projects include efforts by the Louisiana Hemophilia Foundation, Great Lakes Hemophilia Foundation and Utah Hemophilia Foundation.

Come learn how you can start and/or collaborate with new programs in your community!

Friday Sessions Designed For Consumers, All Attendees (top)

A number of Friday’s sessions are designed to reach consumers and all attendees.  

Everything You Thought You Knew About Bleeding Disorders But Didn’t (Traducido en Español)

11:30AM-1:30PM, Reunion Ballroom H

Debbi Adamkin will moderate this panel, with Shari Bender, Vicki Jacobs-Pratt, Roshni Kulkarni, MD, Richard Pezzillo and Carl Weixler speaking. After a brief, creative animated presentation depicting the basics of bleeding and clotting by Roshni Kulkarni, MD, the panel will answer questions from parents. Areas to be covered include: dealing with the diagnosis of a bleeding disorder in your child, treatment options, sports, prophylaxis and rare bleeding disorders. Richard Pezzillo of the NHF Youth Leadership Task Force will give adolescent/young adult perspectives on managing hemophilia. Sponsored by American Red Cross.

NHF Blood Safety Update
(Traducido en Español) Do the 5!

11:30AM-12:30PM, Reunion Ballroom A

Moderated by Shannon Penberthy, this session provides the latest update about advocacy activities in Washington, DC, and across the nation. Key issues are insurance coverage, reimbursement and blood safety.

Survivors and Their Stories: A Celebration of Elder Heroes in the Bleeding Disorders Community

3:00-4:00PM, Reunion Ballroom E

Bradley Lewis, MD will introduce the video, “An Unexpected Life: Living with Hemophilia.” The video features the life stories of older men with hemophilia. These men experienced an extended time of no treatment in their early lives, the development of progressively improved treatments, the setback of HIV and HCV and they have built the stamina to survive it all. This documentary was created by the Alta Bates Hemophilia Treatment Center in Oakland, CA, with grant-funding. The session will provide background and screen the documentary.

Transitioning
(Traducido en Español) Do the 5!

4:00-5:30PM, Reunion Ballroom H

The speakers include Judith Heineman, Katherine Lipsky and Ben Shuldiner. This discussion on how to effectively move through life stages and successive caregivers in bleeding disorders management will feature Ben Shuldiner. Ben, a successful young adult with factor IX deficiency, won everyone’s heart at the last Annual Meeting’s Opening Session. He and Judith Heineman, his mother, will present during this session.

Bayer Launches Initiative To Aid Kogenate ® FS Patients(top)

In response to community needs, Bayer BP has launched a multi-faceted patient assistance initiative in the United States for eligible patients receiving treatment with Kogenate ® FS (Antihemophilic Factor [Recombinant], Formulated with Sucrose). The Bayer Kogenate ® FS Assure Program (BKAP) is comprised of four components:

The Kogenate ® FS Reliance Program is designed to help patients continue treatment with Kogenate ® FS in the event of a lapse in private health insurance coverage. Beginning Aug. 1, 2004, for every three months of continuous Kogenate ® FS use, eligible patients can receive a coupon redeemable for one free month of Kogenate ® FS to cover any insurance coverage gaps. Patients must enroll in the program prior to the insurance gap and must be on Kogenate ® FS for a continuous year to redeem coupons. Up to six coupons from similar programs offered by other manufacturers of recombinant factor VIII will be accepted, provided a patient enrolls in the program before Dec. 31, 2004.

Patients lacking private insurance may be eligible to obtain Kogenate ® FS through the Kogenate ® FS Patient Assistance Program. In this program, patients who are legal U.S. residents, without private insurance, and who meet household income criteria, may receive short-term assistance to obtain Kogenate ® FS.

The Grant Insurance Support Program supports Patient Services Incorporated (PSI), a national non-profit organization. PSI offers a number of services, including helping patients locate and obtain various health insurance policies.

The final component of BKAP is the Bayer Biological Reimbursement HELPline.

Program analysts specially trained to assist people living with hemophilia and their families will provide information and answer questions about Kogenate ® FS, the BKAP program, or general reimbursement issues. The HELPline is available weekdays from 8:30 a.m. to

5:30 p.m. Eastern time, and can be reached via the toll-free number, 1-800- 288-8374.

NewLife Homecare, Inc. Adopts Consumer Bill or Rights (top)

NewLife Homecare has implemented a Consumer Bill of Rights. It is intended to inform, educate and protect individuals in the bleeding disorder community. Every person has rights and responsibilities especially when it comes to medical care. The Consumer Bill of Rights ensures that the bleeding disorder community is treated fairly, kept informed and receives safe and humane treatment. It is also written in a language that is easily understood.

There is a choice when it comes to the quality of care and services needed to effectively manage a bleeding disorder. There are many organizations to choose from but few that equip you with the power of knowledge and the freedom of choice you need to live a happy and fulfilling life. The Consumer Bill of Rights essentially ensures exceptional home infusion and health care services that you receive from NewLife Homecare.

NewLife Homecare, Inc. is a for-profit organization located in Pittston, Pennsylvania. Its staff takes pride in meeting and exceeding the complex challenges that face the bleeding disorders community. Its focus is not only on the physical aspects but also on the mind and spirit. Their staff provides individualized service and a holistic approach to home care that is unmatched by other companies in the industry.

The president and CEO of NewLife Homecare, Father Gregory Malia, lives with hemophilia and can relate to the challenges on a very personal level. The entire staff is professional, knowledgeable and a great support resource that includes advocacy. Their interdisciplinary team consists of nursing, pharmacists, support services, patient advocacy and pastoral care for all families that is available 24 hours a day.

If you would like to learn more, visit NewLife Homecare at booth # 517 or call toll free 877-707-LIFE (5433).

AHF Inc. Announces Continuing Client Satisfaction (top)

AHF ® Inc. Announces Continuing Client Satisfaction

It is with great pleasure that AHF — the Hemophilia Disease Management Company (booth #314) — announces 100% client satisfaction for the 15 th consecutive year. This is what some of our clients say about our services:

“We want to extend our appreciation to you and your staff for all the good support and consideration that you and your staff has provided to our family. I know that we could not get this sense of responsibility from any other company.”

“As parents of a child with hemophilia, we have suffered through poor service from homecare suppliers. Past experience has created much stress and disruption in our daily lives. AHF has provided first-rate service.”

“We pinch ourselves with joy that we finally found a company that meets the needs of our family so beautifully. We never have problems with our medications, supplies, or our insurance. You are always there to help.”

“I don’t know what I would do without you guys...you are my support.  You have been just like family since my son was diagnosed.”

As an AHF client, you, too, would receive the very best home service program available from coast-to-coast. 

• Full range of clotting medications 

• All ancillaries included to complete home infusions 

• On-site pharmacist staff and pharmacy 

• 24 hour a day personal client support services  

• All reimbursements negotiated for the client

• Ongoing patient education program 

• Safety equipment and communication devices

• Visiting nurse services when required 

• Insurance reimbursement and benefit coordination 

• Waste disposal services at no cost

• Medic-Alert program 

• Individualized usage history

• Electronic and manual claims filing 

• Laminated wallet cards

Year after year, we receive 100% satisfaction from our clients and we have been awarded the JCAHO Gold Seal of Approval ™.

Welligan Hugsley Wants You! (top)

Known as Hemophilia Health Services’ Ambassador of Hugs, Welligan Hugsley will be making appearances at the company’s booth (#313) throughout the day. This life-size character charms children and adults alike. Be sure to stop by to receive a “bear” hug and have your photo taken with this popular character. We even have a souvenir photo frame for your snapshot!

You can learn more about Welligan Hugsley in each issue of the award-winning publication, Bloodstone Magazine. Welligan Hugsley lives in Imagination Forest with many other characters. They are all friends with Matthew, a young boy who has hemophilia. Children can also learn more about bleeding disorders and its complications through the non-threatening narrative of “The Adventures of Welligan Hugsley.”

Today HHS representatives will start distributing entry cards to win a laptop computer which will be on display at our booth. You must complete all the information on the card to be eligible for the drawing. The drawing takes place at the HHS booth 11:30 a.m. on Saturday, November 6. You must be present to win. See tomorrow’s edition of the NHF Annual Meeting Daily for more information.

While at the HHS booth, please check out the new HHS web site, www.HemophiliaHealth.com. The site features an expanded children’s activity section, exciting new graphics, and will be packed full of educational resources for the bleeding disorders community. Stop by for a demonstration.

The HHS booth is the place to be.

Living with Hemophilia: Challenges in Day-to-Day Life (top)

At a breakfast symposium held today at the National Hemophilia Foundation’s Annual Meeting, Wyeth Pharmaceuticals hosted a discussion about the challenges faced by families raising a child with hemophilia. The discussion ranged from practical issues, such as managing an infusion regimen, to emotional issues, like allowing a child to participate in physical activities or encouraging an adolescent to take responsibility for his own care.

Neil Cornell, Jr, MD, Director of the Dartmouth Hitchcock Hemophilia Center in Lebanon, NH, opened the discussion, stressing the importance of maintaining an effective infusion regimen to prevent joint disease.

Successful transition from one stage to the next—whether physical, emotional or social—is an important part of raising a child with hemophilia, and was discussed by Joni Osip, RN, MS, Nurse Coordinator at Fairview University Hemophilia and Thrombosis Center in Minneapolis, MN.

Lisa Ryan, whose teenage son has hemophilia A, described how her family has addressed the challenges of living with hemophilia. Matt Stinger provided a college student’s perspective on living with hemophilia and taking responsibility for his medical care.

The importance of successfully integrating medical care in everyday life was a common theme at the symposium. For many patients, ReFacto ® Antihemophilic Factor (Recombinant) provides features that help them more conveniently manage their infusion regimen, including the following:

• ReFacto R2 Kit

• Broadest range of vial sizes among recombinant factor VIII therapies

• Only 2000 IU vial

• Low volume of reconstituted product

• Room temperature storage for up to 3 months

• Color-coded packaging

ReFacto is indicated for the control and prevention of hemorrhagic episodes and for surgical and short-term routine prophylaxis in patients with hemophilia A. The effect of regular routine prophylaxis on long-term morbidity and mortality is unknown. As with the intravenous administration of any protein product, adverse reactions may include headache, fever, chills, flushing, nausea, vomiting, tiredness, or symptoms of allergic reactions. The remote possibility exists for hypersensitivity to non-human mammalian proteins. Please see full Prescribing Information at www.hemophiliavillage.com.

What is PSI and What Can PSI Do for You (top)

PSI locates health insurance policies and subsidizes the high costs of health insurance premiums for people with clotting disorders, who are uninsured or are underinsured.

• If you are a person in the bleeding disorders community and need help because you lost your job and will no longer have insurance or can’t afford COBRA, call PSI for assistance at 800-366-7741.

• If you are a person in the bleeding disorders community and you are approaching your lifetime insurance cap and don’t know what to do, call PSI for assistance.

• If you are a person in the bleeding disorders community and your child will soon reach the age where they no longer will be covered on your insurance, call PSI for assistance.

• If you are a person in the bleeding disorders community who has a need for helmets, knee/elbow pads, crutches, or other related items to assist with the clotting disorder, call PSI for assistance.

PSI is not a home care company. PSI is not a PHS company. PSI is not a provider of factor.

PSI is a national nonprofit organization whose caring staff is committed to supporting people with expensive chronic illnesses and conditions through locating solutions with health insurance and assisting with premiums and prescription co-payments to facilitate positive health and well-being.

PSI is the only non-profit with an Office of the Inspector General’s Opinion which allows it to provide premium, co-payment and items assistance. Founded by a member of the bleeding disorders community, for the members of the bleeding disorders community.

If you have any questions, please visit booth #421, or call PSI at 800-366-7741, Monday through Friday from 8:30 AM–5:00 PM for personal assistance.