Dancers, Speakers Set Enthusiastic Tone (top)
By Emily Clark

The Lake Highlands High School Wildcat Wranglers dance troupe, sporting colorful costumes and expert moves, opened the 56th NHF Annual Meeting Friday morning, with attendees tapping their toes and clapping to a medley of country and western tunes. The dancers sported smiles as big as the Lone Star state, as did the speakers who presented their remarks with equal enthusiasm and hope for the future.

NHF conference Co-chairs Ruth Mulvaney and Debbi Adamkin kicked off the conference by thanking staff and the working groups. According to Mulvaney, putting together this year’s conference was a challenge because of the diversity of the bleeding disorders community.

“We have social workers, RNs, MDs, consumers, scientists, therapists, sponsors and parents,” Mulvaney said. “It’s amazing that we can all come together as a community.”

Adamkin recalled the beginning of her involvement with NHF. “The first meeting I attended was when my son had just been diagnosed with hemophilia A, and I was devastated,” she said. “I was embraced by this wonderful community, and my education began.”

Robert Champagne, conference co-host and president of the Texas Central Hemophilia Association, urged families to begin today to set a positive vision for their children. “As the parent of a three-year-old with hemophilia, I salute all parents who are working to create a better community for our children,” Champagne said.

Co-host Debbie De La Riva, executive director of the Lone Star Chapter, said she discovered her potential and her power in the NHF organization. She also discovered something equally important. “Everyone in this room has been touched by someone coping with a bleeding disorder,” she said. “This is not an ordinary group of people — I realize that this is my new extended family.”

NHF president Richard Metz, MD, spoke of the challenges he faced when his now 17-year-old son was diagnosed with severe factor VIII deficiency. “I soon found out the value of HTCs,” he said, adding that being a physician was no advantage in getting treatment at hospitals. “Many years have passed, and I’ve realized that it’s not just treatment, but community,” Metz said.

Metz went on to describe the problem-solving and democratic processes that went into choosing a new NHF Board, as well as the soon-to-be-ended search for a new CEO for the organization. He also thanked NHF research partners for their ongoing efforts to search for a cure and train new hematologists to treat bleeding disorders.

Metz also pointed out the fight against attempts to restrict access and choice of physician and product, saying that advocacy is one of NHF’s biggest jobs. “We will remain a strong voice to stop these attempts,” he said, “And we will also deal with insurance issues.”

In the education area, Metz discussed Project Red Flag for women with bleeding disorders, NHF on the Road, a traveling program, and the newly established National Youth Leadership Institute to train future leaders.

Metz spoke hopefully of cures through gene therapy, but said that it’s just as important to improve the delivery of existing therapies to the bleeding disorders community. Finally, he urged attendees to reach out to the world community and broaden its perspective by helping those in other countries who lack adequate factor resources.

Benjamin Shuldiner, principal of the High School for Public Service in Brooklyn, introduced the three keynote speakers, all of them active in education and advocacy in the bleeding disorders community.

Richard Johnson, peer educator and founder of the Man Program, recounted his half-century of living with hemophilia and, later, with the HIV he contracted from blood products. He recalled how the introduction of frozen plasma in the 1960s, freeze-dried products in the 1970s and home care with self-infusion in 1974 eventually untied him from treatment centers and allowed him to have a life. “We all pray for a cure, but we have to remember how far we’ve come,” Johnson said.

Fourteen-year-old Josephine Droney, diagnosed with Type 2 VWD, described herself as “one of the lucky ones.” She received early diagnosis and treatment and now helps raise money for camp scholarships and Project Red Flag. Recently, Droney lobbied on Capitol Hill. “I got sore feet from running the halls of Congress all day,” she said, “but I want to be part of the solution.”

Rich Pezzillo is a 21-year-old college student whose radio handle is “DJPhilic.” Pezzillo is part of NHF’s Youth Leadership Council and also serves on the Youth Leadership Task Force.

“I always thought I had moderate hemophilia,” Pezzillo said. “But when I was a senior in high school, I had my wisdom teeth extracted and the bleeding wouldn’t stop. I was in the hospital for two weeks.”

Pezzillo had to learn self-infusion, developed two muscle bleeds that confined him to a wheelchair for months and felt totally alone. “I went into a deep depression,” he recalled. “I had to understand and alter my life. I came to the realization that there was nothing I could do or say to make the hemophilia go away.”

Pezzillo changed a life he described as “dogged by monsters” into one of positive attitude and gratitude for the support he received. “By shifting my view and accepting my condition, I now see the open doors instead of the closed ones,” he said. “We have a choice in the attitudes we adopt in dealing with each day’s new challenges and obstacles.”

His experiences last summer as a camp counselor further opened his eyes. “I was completely caught off guard by summer camp,” he said. “I found a community of people just like me, and it was a revelation. I was able to be a role model—imagine that!”

Panelists: Symptoms, Needs Different for Women with Bleeding Disorders(top)
By Emily Clark

Women with bleeding disorders (WBDs) have psychosocial and medical issues not seen in men with similar disorders, according to social workers and panelists at NHF’s social work pre-conference meeting on Thursday afternoon.

Edward Kuebler, LMSW-ACP, began the discussion by presenting an overview of the various bleeding disorders—including von Willebrand disease (VWD) and platelet disorders—frequently diagnosed in women. Although there are several types and sub-types of VWD, all involve the lack of a factor that aids in platelet adhesion to stop bleeding. VWD is nearly always hereditary, Kuebler said, noting that Type 1 is most common.

Platelet disorders and factor deficiencies are other less common bleeding disorders, with different treatment options for each type.

For Type 1 VWD, the most common treatment option is hormonal therapy, usually birth control pills. This presents a challenge for social workers, Kuebler said, because of the concerns parents have about prescribing such medications to teenage girls who present with menorrhagia, severe menstrual bleeding.

“Part of our job is helping parents understand that this is a treatment, not a preparation for sexual activity,” Kuebler said, noting that menorrhagia can have serious mental health and self-esteem consequences for women, affecting their social lives and their work. He also said that, because so many of the disorders are hereditary, families of newly-diagnosed sufferers may think that the severe bleeding is normal and not seek treatment.

Many women experience symptoms for years before diagnosis, according to Mary Anne Schall, RN, MS. Schall said that too many women feel they are alone with their conditions and don’t know where to turn. She advised social workers to do all they can to educate physicians and the women themselves.

“It’s extraordinarily empowering not to feel alone,” Schall said. “Outreach is important. Some women may be getting drugs, but they’re not getting any other information about their condition. It’s hard to move on when no one recognizes and validates your feelings. We need to educate providers and set up insistent and assertive communication.”

Social workers should make sure that women understand their bleeding disorder diagnoses and work with their clients to solve problems, Schall said, noting that it is often difficult for teens to explain and cope with symptoms such as menorraghia, frequent nose bleeds and bruising.

According to Sue du Treil, PhD, LCSW, it is important to recognize depression and other manifestations of mental illness in women with bleeding disorders. Du Treil told attendees that she often uses the Beck Depression Inventory Scale to help determine levels of depression and recommend treatment options. She noted that resilience is often the bridge between stress and coping in women dealing with bleeding disorders. “They have many complicating issues but great resiliency,” she said.

The meeting focused on helping WBDs become advocates for themselves and others through retreats, camps and the Woman to Woman network of advocates, three of whom spoke out about the barriers and hardships they faced in dealing with bleeding disorders.

Elaine Allred suffers from Type 1 VWD and so do her three daughters. She was first diagnosed by a dentist and then spent years trying to explain her condition to physicians who were clueless. While she was in Germany with the US Army, a German physician explained her condition to her in detail, four years after her diagnosis. She lost 22 jobs because of her condition before she had a hysterectomy.

“I’ve now been steadily employed for five years,” Allred said. “And I have become an advocate for myself and my daughters.”

Darcy Zwier is a factor VIII symptomatic carrier, which has affected her two sons. She called the Woman to Women program “the best support organization ever.” She noted the difficulty of getting treatment for her sons, “much less for myself,” because such bleeding disorders are treated as a non-life-threatening nuisance.

“I have fought for 13 years just to get my kids treated,” she said.

Celine Caithemer’s nine-year-old daughter was diagnosed with a bleeding disorder at seven months. Caithemer’s life was one of monitoring her daughter’s severe nosebleeds, fending off accusations of child abuse and taking her daughter to infusion and ear, nose and throat clinics.

“It’s agony to watch a child go through this,” Caithemer said. “What finally helped me was a social worker who went with me to watch the process. It was like a weight lifted, and she gave me some practical tips for organizing my life. It took me six years to realize that I also have a bleeding disorder. You tend to be an advocate for your child, but not for yourself.”

Blood Safety Session Focuses on Blood Transmission of vCJD (top)
by Hannah Pierce

This year’s session on blood safety focused on the recent blood transmission of variant Creutzfeldt-Jakob disease (vCJD) in the United Kingdom. In September 2004, UK health authorities informed people with bleeding disorders that they are at risk for acquiring vCJD (the human form of the so-called “Mad Cow Disease”) if they used UK plasma products manufactured between 1980 and 1998. These products were made from plasma collected from donors in the UK who were later identified to have acquired vCJD from contaminated beef products or possibly from donors who still remain asymptomatic for the disease.

Newly appointed World Hemophilia Federation (WFH) President Mark Skinner gave an overview of the UK situation, being sure to note that despite the fact that this is the first time vCJD has had a potential direct effect on the bleeding disorders community, there has been no known transmission of the disease from blood or plasma products used in the United States. Skinner also detailed lessons that have been learned from the recent news in the UK: the value of a centralized data collection system so that patients can be notified if there are problems with a product they received, the importance of avoiding stigmatization of affected patients as a result of the notification process, the fact that many recipients of exported blood products received little or no information about the situation and the potential for confusion if different countries offer conflicting advice.

“The UK’s products were not used in the US, but people who had traveled or lived there during those periods could be affected,” said Skinner. “This makes vCJD a global issue.”

Mark Weinstein of the Food and Drug Administration’s (FDA) Office of Biomedical Research Resources at the Center for Biological Evaluation and Research discussed the more technical aspects of the spread of vCJD in the UK and noted that the FDA and the Centers for Disease Control and Prevention are discussing the UK importations’ risk to recipients. This assessment is currently being conducted and will be the basis for further recommendations from the FDA.

Val Bias, a member of NHF’s Blood Safety Committee and a consumer representative for the FDA’s Transmissible Spongiform Encephalopathies Advisory Committee spoke of what his position has taught him about the current state of vCJD prevention in the US. He noted that his membership on that committee has allowed him to provide a “reality check” for those evaluating the risks of vCJD. His participation in questions like “Should the FDA change their product labeling requirements?” and “How many cows should be tested for CJD?” have helped ensure that mistakes that were made in regard to HIV and hepatitis C in the 1980s will not repeated. “We’ll learn from the UK’s lessons — how to provide treatment and care, product availability and how the health system will accommodate new patients groups,” said Bias. “We’re making progress. The FDA is more active on this than it was a year ago.”

All three presenters stressed the need to address the balancing of care of the patients and the need to prevent secondary infections with notification.

For more information on this and any blood safety issue, visit the WFH (www.wfh.org) and NHF Web sites (www.hemophilia.org). Both organizations are in contact with health authorities around the world and are committed to keeping consumers and providers abreast of new developments.

Final Night Event (top)

The Final Night Event sponsored by Baxter will be held tonight at Eddie Deen’s Ranch from 7:00–11:00PM. Join the Western extravaganza featuring authentic Texas barbecue, live music, line dancing and various fun-filled country Western activities, such as crawfish/armadillo racing, trick roping, face painting, cowboy singing and much more for attendees of all ages.

Shuttle buses will begin boarding at 6:30PM from Trinity Crossing located on the lobby level just outside of Landmark Circle.

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

Alan Martin, Roland, OK
	“We infuse our son three or four times a week. I would like the technology to make it last a longer period of time so it would be easier on him.”

Kelley Buchanan, Sugar Land, TX
	“I wish that instead of three times a week, we could infuse our son once a month. Eventually a cure will come, but for now, I just wish we could infuse him less often.”

Rebecca Buchmiller Sacramento, CA
	“At least for my son, the method of infusion is the biggest challenge. Finding a vein is really a struggle.”

Willie Brasley Hopkins, SC
	“I’m starting the Dads in Action program in the Carolinas and it’s a challenge to get dads involved with their children-getting them to take the lead, to take the kids to activities, educating themselves and infusing their kids. Usually it’s the mom’s who do that.”

Do the 5! Five Years Celebrated (top)
by Emily Clark

It’s been five years since the NHF National Prevention Program (NPP)
instituted “Do the 5!” an educational program to help reduce or prevent complications of hemophilia. On Friday afternoon a panel of NPP staff and consumers honored the five-year anniversary by presenting some of the creative choices hatched at local chapters and treatment centers to encourage healthy lifestyles.

Do the 5! offers strategies for a longer and healthier life. The Five include annual checkups, hepatitis A and B vaccinations, early bleed treatment, exercise for joint protection and regular testing for blood-borne infections.

Reports from the field addressed results of a cooperative agreement between the CDC and NHF to fund grants for outreach prevention programs in local communities. The Louisiana Hemophilia Foundation used a $10,000 grant to donate memberships to YMCAs and other fitness centers, so that families could get in the habit of exercising.

According to Lori Keels, executive director of the Louisiana Hemophilia Foundation, 12 patients and their families are participating in the one-year program, and she hopes that the grant will be extended.

“We have 32 participants in all, when you include family members,” Keels said. “We get usage reports each month, which we can use for tracking patients in the study.” Keel praises the grant money, which she sees as “funding to remove barriers” to exercise.

Participants in the Louisiana program must first get a treatment plan from a physical therapist and then work with a trainer at their chosen facility, to determine the best exercise plan. According to Karen Wulff, a hemophilia nurse at the Louisiana Comprehensive Hemophilia Care Center in New Orleans, patients must also keep bleeding logs and fill out quality of life questionnaires, which will be evaluated at six months and one year.

“If the grant is extended, we may see some real gains in function and less bleeding,” Wulff said.

To encourage Utah families, Susan Soleil of the Utah Hemophilia Foundation used NHF grant money for family education sessions before last year’s NHF meeting in Salt Lake City.

“We were trying to get families more involved in NHF events,” Soleil said. “Our grant involved 30 families in Utah and Idaho, and we asked them to keep exercise logs.” Soleil said that each family was allowed to come up with its own exercise plan, which could involve anything from outdoor activities to housework —“anything to get them off the couch,” she said.

“Our biggest barrier was the weather,” Soleil noted, adding that the project took place during the winter months. One of the Utah participants, Stacey Mollinet, said that she, her husband and their five children “played tag indoors, had pillow fights and went skiing.” One of Mollinet’s children has hemophilia A, and she said she was surprised to discover that the family was already fairly active. “We also dance, do gymnastics and my husband plays ultimate Frisbee,” Mollinet said.

Tammy Molter, program services coordinator for the Great Lakes Hemophilia Foundation in Milwaukee, used grant money to develop a video called “A Long and Happy Life,” in which families of boys with hemophilia discussed how to help children transition from childhood to college and adulthood.

The video, which is available free of charge to HTCs and foundations, stresses the importance of insurance issues, career choices and encouraging children in what they can do, rather than fearing what they cannot. The families interviewed also stressed early infusion and keeping joints healthy.

The CDC’s Sara Critchley, RN, MS, stressed the importance of the prevention grants, especially as they relate to joint health. “Activity and exercise are so important, because being overweight has a profound impact on joints,” she said, noting earlier findings that many adolescents with blood disorders are overweight.

HIV, HCV and Hemophilia Treatment Options Discussed (top)
By Deb Nerud, BS, MLS, NREMT-P

Complications, comorbidities, and new treatments were addressed by three noted speakers at Friday morning’s HIV, HCV and Hemophilia mini-symposium.

Deborah Brown, MD, opened the session on the topic, “Predictors of Spontaneous Clearance of Hepatitis C Viral (HCV) Infection in Persons with Hemophilia.”

“The ability to mount an immune response is dependent on certain variables,” stated Brown. These variables include the age of the patient at time of infection, immune competence, viral load, reexposure, and comorbities such as HIV, HBV and alcohol use. Brown stated that patients who clear are most likely to do so within the first year of infection.

Citing the Multicenter Hemophilia Cohort Study II, she concluded that the younger the patient’s age at infection, the higher the clearance rate of HCV and a patient born more recently also had a higher HCV clearance rate.

W. Keith Hoots, MD referenced previous studies that indicated liver failure was a significant cause of death in co-infected individuals, and that HIV facilitates HCV infection. These statements hold true today, but the theory that among heterosexual couples, when the male hemophilia patient is co-infected, HCV transmission occurs at a greater rate “has not held up.”

Hoots outlined complications of treatment regarding bleeding issues. These include the fact that protease inhibitors have been implicated in enhanced bleeding, platelet dysfunction and worsening hepatic synthetic function have been implicated, and procedural intervention for HIV is often complicated by co-existing hemophilia and decreased production of other hepatic-derived procoagulants.

Nonhemorrhagic complications include dyslipidemias among patients with HAART regimen that contain protease inhibitor, a higher incidence of HAART-associated diabetes, and a risk for life-threatening lactic academia secondary to competitive metabolism by the cytochrome P450 system. [HAART is defined as three or more drugs from one of the follow categories: at least one PI, at least one NNRTI, AZT/3TC/ABC or D4T/3TC/ABC].

Risk factors for anemias include a history of clinical AIDS, Black race, low body mass, increased age and history of bacterial pneumonia.

Margaret Ragni, MD, MPH, provided clinical aspects of the role of the liver in HCV and described new treatments which may soon be available for HCV.

The liver is the site of production and secretion of factors VIII and IX, the site of hepatitis C infection and liver transplants have been shown to cure hemophilia. “The liver secretes, filters and regenerates and when the liver is injured it produces growth factors and produces fibers which cause inflammation and repair; this can become out-of-control,” began Ragni.

HIV impacts HCV in that liver problems develop faster and drug side effects are more common.

As liver disease is often asymptomatic until too late, monitoring and assessment of patients is necessary. Clinical counseling about alcohol and drug interaction, biochemical tests, physical exams and scans and “liver biopsy, the only gold standard for assessing the extent of liver damage” all need to be done.

Ragni described transjugular biopsy as a safe procedure for hemophilia patients with a less than 0.1% bleeding rate with factor given before and 4 and 24 hours after biopsy. The catheter is passed through the jugular to the liver as to not cause bleeding in to the peritoneal cavity.

Exciting new treatments are currently in clinical trials or are the basis for development of new clinical trials. These include: protease inhibitors such as BILN 2061 which shows a rapid decline in HCV viral load, but produces cardiotoxicity at high doses, and VX-950; RNA Interference which is a new powerful way to fight viral infections, that reduces HCV replication; IMDPH inhibitors which are oral agents that inhibit viral RNA synthesis and enhance the effectiveness of antiviral therapy; Monoclonal antibodies HCV-AB68 and HCV-AB65 which appear to neutralize HCV in mouse models; TLR7 agent which activates innate immunity, as well as vaccines and other treatments.

What the OIG Ruling Means to You and What it Means for the Companies (top)

Patient Services Incorporated (PSI) received the Office of the Inspector General’s Opinion of Approval on April 4, 2002. This opinion allows PSI to provide financial assistance to help pay health insurance premiums for those with specific expensive chronic illnesses or rare disorders. This assistance includes paying all or part of a patient’s health insurance premiums for privately insured and otherwise uninsured patients. PSI can provide these services legally because they do not refer or suggest that patients use any particular drug, or service provider, which means PSI does not entice or induce the patient.

PSI also developed a patient service items program to address the OIG opinion #02-14 prohibiting give-a-ways. This protects the companies and patients from any enticement or inducement issues, while allowing patients to still receive needed items not covered by insurance, i.e. helmets, crutches, knee braces, cryo-cuffs, etc. PSI provides a safe zone from any enticement or inducement issues. This is important in order to protect both the provider of service from any civil penalties and the patient from any civil penalties for knowingly being enticed or induced.

Third Annual NACCHO Conference Scheduled for February 11-13, 2005 in Tempe Arizona (top)

The third annual NACCHO (North American Camping Conference of Hemophilia Organizations) will be held in Tempe Arizona on February 11–13, 2005. NACCHO is the only conference organized by and for the bleeding disorder camping community, and is dedicated to sharing best practices for conducting summer camps for children with bleeding disorders and their families. Wyeth is the founding and continuing sponsor of NACCHO.

“Over the past three years, people have told us that their camps have improved because of the things they have learned at NACCHO. This conference has allowed us to show each other what we do well, and learn how to improve elements of our campsthat can be better,” said Michael Rosenthal, Chair of the NACCHO Planning Committee. Rosenthal is executive director of the Hemophilia Association in Phoenix, Arizona.

The agenda for the 2005 NACCHO is still being developed, but sessions are planned on a variety of topics, including family camps, field games, discipline issues, and evening activities.

“We are very honored to be the founding and continuing sponsor of NACCHO. The Hemophilia Association has done a superb job with this conference, and thanks to them, “NACCHO” has become synonymous with excellence in the hemophilia summer camp community,” said Michael P. Russomano, Jr., Vice President & Global Business Manager – Hemophilia at Wyeth.

“While planning and running a summer camp is an enormous task, it can also be a life-changing event. At NACCHO, we try to give the attendees the tools to make everyone’s camp experience — kids and volunteers alike — richer, more meaningful and more fun,” added Mike Rosenthal.

For more information about NACCHO and registering for the conference, please contact the Hemophilia Association at www.hemophiliaz.org or at (602) 955-3947.

AHF ® Inc. Reaches New Heights in Charitable Giving to the Community (top)

We believe it is most important to give back to our community. Our yearly donations include the Beth Carew Memorial Scholarship program which funds awards of $2,000 to each of 5 students with bleeding disorders in his/her pursuit of higher education. AHF directly supports local chapters; chapter fund-raising events; chapter and HTC sponsored camper scholarships; and hemophilia camps across the country.

Our national charitable giving program includes funding for the Hemophilia Federation of America; the National Hemophilia Foundation (NHF); the American Liver Foundation; the Elizabeth Glazer Pediatric Aids Foundation; Paul Newman’s Hole in the Wall Gang Fund; Project Inform; and many more.

We believe in the importance of research to find a cure. AHF is the only home care company serving the bleeding disorders community to have donated over $1,000,000 to NHF’s It’s Time for a Cure campaign. In addition, AHF’s Cure Bear efforts have now raised an additional $20,000.00 for NHF through the sale of Cure Bears by families across the country.

While supporting chapter and national programs, educational efforts, and research for a cure, we are still committed to bringing the very best home care services to families from coast-to-coast through:

• Next-day express delivery to homes/clinics

• Full range of clotting medications/ancillaries 

• 24 hour a day client services support 

• Scheduled patient contact and individualized usage history

• Electronic and manual claims filing 

• All reimbursements negotiated and benefits coordinated

• Ongoing patient education program 

• Safety equipment, communication devices, and nursing when required 

• Waste disposal (sharps containers) services at no cost

• Medic-Alert Jewelry and Program Membership

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

New Adult Hemophilia Quality of Life Tool Now Available for Hemophilia Community (top)

Data validating the first and only available health-related quality of life (HRQL) instrument for adults with hemophilia were presented at the World Federation of Hemophilia Congress in Bangkok, Thailand. Bayer Biological Products (BP) has supported the development and validation of Haemo-QoL-A in an effort to measure, in a meaningful way, health-related quality of life (HRQL) information for adults living with hemophilia. The new instrument will allow more complete evaluations of the effects of hemophilia care on people’s lives, assisting clinicians, reimbursement agencies, and governments in their decisions regarding treatment options.

Results from this clinical study confirmed Haemo-QoL-A’s internal consistency, reliability, reproducibility, and validity. Study findings also supported establishment of six subscales: physical functioning, role functioning, worry; consequences of bleeding, positive affect, and treatment concerns. “These results indicate this disease-specific HRQL instrument is a reliable and valid measure of the patient perspective on hemophilia-related quality of life,” said Anne Rentz MSPH, research scientist at MEDTAP International, whose team collaborated with Bayer scientists and an international advisory committee of experts in hemophilia and outcomes research.

Responding to requests from the hemophilia community for a disease-specific instrument to effectively measure HRQL, Bayer BP Clinical Development has invested more than $600,000 to develop and validate Haemo-QoL-A. As a result, there is now one global instrument that can be used in international clinical trials, as well as in the clinical setting, to assess outcomes from regimens such as primary prophylaxis or immune tolerance induction. Haemo-QoL-A also can be used to assess quality of care rendered in a particular hemophilia population, at a particular institution, or in a particular country.

NewLife Homecare, Inc. Adopts COnsumer BIll of 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).

NHF Annual Meeting (top)

Future Dates

57th Annual Meeting
October 27–29, 2005
San Diego, California

58th Annual Meeting
October 12–14, 2006
Philadelphia, Pennsylvania

59th Annual Meeting
November 1–3, 2007
Orlando, Florida