Hemophilia and Joint Replacement

Your Online Persona: Employers Are Reviewing It, Why You Should, Too

2011 Scholarship Programs

Brian Cisneros: Quietly Challenging the Status Quo

INSIDE

Wi nte r 2 0 1 1

A publication of

3 Hemophilia and Joint Replacement Dr. James Luck has been performing joint replacements at Orthopaedic Hospital in Los Angeles since the Charnley synthetic hip replacement was introduced in the U.S. in the ‘60s. He and his colleague, Dr. Mauricio Silva, specialize in joint replacements in the hemophilia community.

Kids’ Corner16

Quest StaffCarlota Bentley, Editor-in-ChiefLou Anne Epperson, Clinical EditorValerie Hansen, Staff WriterAggie Gilbert, Contributing WriterKevin Correa, Contributing WriterPatrick Standish, Graphic Designer

Quest is a quarterly publication that is provided free of charge to the bleeding disorders community. Opinions expressed by contributing authors and sources are not necessarily those of the publisher. Information contained in this newsletter is for educational purposes only and is not intended to substitute for medical or billing advice. Do not use this information to diagnose or treat a health problem or disease without consulting a qualified physician. Please consult your physician before starting any course of supplementation or treatment, particularly if you are currently under medical care. Never disregard medical advice or delay in seeking it because of something you have read in this newsletter.

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14 Hemophilia News

10 Your Online Persona: Employers Are Reviewing It. Why You Should, Too.Increasingly, companies are using social networking sites to screen potential hires. If you have hemophilia and you’re looking for a job, could you be screened out of the running if you post personal health information online?

13 Brian Cisneros: Quietly Challenging the Status QuoBrian Cisneros spent half his young life in the hospital. Transfu-sions were the treatment choice of the day, until factor became available when he was about eight. Despite his hemophilia and joint bleeds, the more people told Brian he couldn’t do something, the more he challenges their assumptions.

6 Together Forward Scholarship ProgramCoram Specialty Infusion Services introduces their Together Forward Scholarship Program. Four scholarships of $2,500 each will be awarded each year.

7 Scholarship Opportunities for the Bleeding Disorder CommunityA wide variety of scholarship opportunities are available for the bleeding disorder community, including those for family members. Quest accessed an extensive scholarship listing provided by the Hemophilia Federation of America and expanded the information further.

We welcome your comments, stories and suggestions. All correspondence, reprint requests, changes of address and subscription inquiries should be sent to:

Quest Coram Specialty Infusion Services c/o Marketing & Communications 555 17th Street, Suite 1500 Denver, CO 80202

Email communications@coramhc.com

© 2010 Coram Specialty Infusion Services. All rights reserved. No part of this publication may be distributed, reprinted or photocopied without prior written permission of copyright owner. All service marks, trademarks and trade names presented or referred to in this newsletter are the property of their respective owners.

3

Hemophilia and Joint Replacement

“Taking care of patients with a severe, disabling, chronic disease like

hemophilia and doing it with a team is one of the most gratifying

experiences you can have in medicine,” says James V. Luck, Jr., MD

from Orthopaedic Hospital in Los Angeles. He and his colleague,

Mauricio Silva, MD, specialize in joint replacements, and many of

their patients come from the hemophilia community.

4

Dr. Luck has been performing joint replacements since the Charnley synthetic hip replacement was introduced in the U.S. in the ‘60s. His father was among a small group of surgeon investigators selected by the FDA to do a clinical study of the new hip. Dr. Luck was a resident in orthopedic surgery at Orthopaedic Hospital at the time and worked with his father on a number of those replacements.

Dr. Silva trained in orthopedic surgery in Colombia, South America, and joined Dr. Luck’s team in 1999 after finishing his fellowship. In 2005, he and Dr. Luck published a study of 90 total knee replacements performed on people with hemophilia at Orthopaedic Hospital, all of them done by either Dr. Luck or the two doctors together.

Knee replacements are the most common orthopedic surgical procedure for hemophilia patients, but the doctors have also replaced hips, shoulders, ankles (although they are not proponents of that procedure) and even a few elbows.

“The biggest advancement in joint replacement in several decades has been the development of a more wear-resistant material,” Dr. Luck says. “The typical joint replacement is metal on one side and plastic on the other. The weak link was the plastic component. About ten years ago, our biomechanics research laboratories at Orthopaedic Hospital developed a molecular cross-linked polyethylene that has improved the wear characteristics about ten-fold. So a joint that would last 15 years before could theoretically last 150 years.”

The new material is used mainly in hip replacements because that joint tended to wear out more quickly than knees, but it is gaining popularity in knee replacement. The study that the two doctors conducted in 2005 showed that the survivorship of a knee replacement absent infection or other complications was 96 percent at 20 years.

However, the study also raised a cautionary issue.

Infection Risk“In that study,” explains Dr. Silva, “we found that patients with hemophilia tended to have a higher risk of infection. In general, infections occur in about one percent of patients, but people with hemophilia tend to have about 15 percent risk of infection.”

The doctors don’t think the infection is linked to immune suppression because the study found the same incidence of infection in patients who were HIV-negative as those who were HIV-positive. What they do suspect is that frequent self-infusion with clotting factor can provide an avenue for bacteria to get into the blood stream.

“If the patient is not extremely meticulous about sterile preparation, bacteria can get into the blood stream and that goes to the artificial joint,” says Dr. Luck. “We know from other populations that self-infusion is a high risk factor for systemic infection and infection in artificial heart valves or joint replacements, so we have taken pains to carefully instruct our patients on the importance of sterile preparation. They also have to have regular medical checkups, take antibiotics before dental work and report immediately any sign of infection anywhere in their system. Since we’ve done that, the incidence of infection appears to be much lower.”

“I think the future of knee replacement with hemophilia, even with that risk of infection, is bright,” adds Dr. Silva. “It’s definitely a procedure that allows them to function better and to control the pain. I think what is going to

James V. Luck, Jr., MD

Mauricio Silva, MD

5

happen is that we will be facing an increasing number of patients with inhibitors that will require a procedure to treat advanced hemophilia arthropathy, and that will be a significant challenge.”

Pre-Surgery ConsiderationsPeople with hemophilia have to address questions about joint replacements that the general population does not. Dr. Luck outlines three main considerations a patient should discuss with his physician:

� Do they really need a knee replacement or is there an alternative form of treatment that would provide a satisfactory result?

� Will they be able to tolerate and actively participate in the physical therapy necessary after surgery?

� Do they have an inhibitor?

� Do they have any possible sources of infection, such as a port?

“Physical therapy is much more challenging for people with hemophilia than the general population,” Dr. Luck says. “Hemophilia patients tend to develop scar tissue in their joints more than other patients. It’s called arthrofibrosis, and they have to work harder after the surgery to gain good range of motion. The good news is that most hemophilia patients have a high pain tolerance. But this is a consideration.”

The doctors believe they may be treating more patients with inhibitors, since those patients are more at risk for joint damage because their systems fight the benefits of factor in suppressing bleeds. Controlling bleeding after surgery is also more difficult for those patients, as is post-surgery physical therapy.

“They are in the hospital much longer and in rehab much longer,” Dr. Luck explains. “It is just a stormier course. I’ve talked to patients afterward who have questioned whether or not it was worth it.

“In considering infection, if the patient is not meticulous about sterile preparation, in-dwelling ports can cause a problem. One option is to remove the port prior to surgery, which would reduce one of the risks of late infection.”

Both doctors suspect that in the younger demographic of hemophilia patients who have had the advantage of factor, the instance of arthropathy may occur later in life.

“We know from research in a variety of diseases that if you have some damage to the joint early in life, eventually that becomes problematic and may require joint replacement,” Dr. Luck explains

Drs. Luck and Silva have pre-surgery directives for their patients. First, the patient should start physical therapy to build up the muscles and get them oriented to what they will need to do after surgery. Second, they need to get a good dental check up (a primary source of infection), a thorough medical check up, and a last-minute check for an inhibitor. Optionally, if they are a good candidate to provide their own blood prior to surgery, they should do that.

Another factor they address is their patient’s expectations, what the patient hopes to obtain from the surgery. Often with hemophilia patients, a full range of motion is not realistic, but in many cases the patient simply wants to be relieved of a lifetime of pain. In their world, however, success stories are frequent and extremely meaningful.

“We had a patient who came from Mexico who didn’t have access to clotting factor. He was in his 20s and had been bound to a wheelchair for a number of years,” Dr. Silva says. “He had severe flexion contracture in both knees. We were able to manage his contractures and get his knees strong and then replaced both knees. He didn’t get a full range of motion, but he is now a community ambulator without assistive devices.”

continued on page 15

Sponsored by Coram Specialty Infusion ServicesCoram Hemophilia Services established the Together Forward Scholarship Program to provide opportunities to pursue higher education for members of the hemophilia and related bleeding disorders community who plan to earn an undergraduate education at a four year college or university. Four scholarships of $2,500 each will be awarded annually to applicants meeting the required criteria. Applications will be accepted beginning January 1, 2011 with deadline of April 1, 2011.

EligibilityThis program is open to high school seniors or current college undergraduates living with hemophilia or von Willebrand disease. Applicants need to be enrolled in full-time undergraduate studies at a four-year college or university. U.S. citizenship and demonstrated leadership through service or volunteer work in the bleeding disorders community are also required of applicants.

All applicants will need to provide:

Together Forward Scholarship Program

Scholarship Hotline: 800.310.4053Scholarhship hotline administered by International Scholarship and Tuition Services, Inc.

To learn more, visit coramhemophilia.com/scholarship

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� Current high school or college transcripts

� Class rank and class size

� ACT or SAT composite scores

� Response to an essay question

� Documentation of volunteerism or community service

Recipient SelectionScholarship recipients will be evaluated by International Scholarship and Tuition Services, Inc., a third-party vendor, to validate that all eligibility requirements are met. The final selection will be determined by a scholarship committee. Consideration will be given to those with a balanced combination of academic accomplishment, written essay originality and community service.

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Alex Lieber Memorial ScholarshipAmount: Two $1,000 scholarshipsCandidate: People with hemophilia or von Willebrand disease accepted to an accredited college, university or vocational/technical school. Candidates must be able to demonstrate a strong record of volunteer service.Contact: LA Kelley Communication, Inc.65 Central St.; Georgetown, MA 01833978.352.7657info@kelleycom.comwww.kelleycom.com/AlexLieber

Bayer Hemophilia Leadership Development ProgramAmount: $15/hourCandidate: College students (sophomore through senior year) touched by hemophilia are encouraged to apply for the eight-week paid summer internship program that will begin in June at the Bayer HealthCare U.S. headquarters in Wayne, New Jersey.Deadline: Feb. 4Contact: summerinternprogram@bayer.comwww.livingbeyondhemophilia.com/internships

Bill McAdam Scholarship FundAmount: $2,000Candidate: Person with hemophilia, vWD or other bleeding disorder, or spouse, partner, child or sibling planning to attend an accredited college, university, trade or technical school, or certified training program.Deadline: May 15Contact: Bill McAdam Scholarship Fund22226 Doxtator; Dearbourn, MI 48128313.563.1412mcmcadam@gmail.com

Bradley Krueger Memorial ScholarshipAmount: Up to $5,000Candidate: People with a bleeding disorder or parents, siblings, children and carriersDeadline: June 15Contact: Aimee Krampe-Rizk, Program Coordinator, Hemophilia Foundation of Illinois210 S. Des Plaines Street; Chicago, IL 60661312.427.1495www.hfi-il.org/scholarships.htm

Calvin Dawson Memorial ScholarshipAmount: Number and amount of scholarships variesCandidate: Florida resident with bleeding disorder attending a college, university or trade school.Deadline: April 30Contact: Hemophilia Foundation of Greater Florida1350 North Orange Avenue, Suite 227Winterpark, FL 32789800.293.6527

Christopher Mark Pitkin Memorial ScholarshipAmount: Vary from $500 to $1,000Candidate: All members of the hemophilia community, including spouses, siblings and children pursuing a post-high school, college or technical/trade school education. People with HIV and hemophilia and their families are encouraged to apply. Deadline: August 26Contact: Hemophilia Foundation of Southern California6720 Melrose Avenue; Hollywood, CA 90038www.hemosocal.org

Dugdale-Van Eys ScholarshipAmount: Number of recipients and the amount awarded determined by available funds

Candidate: A college-bound high school senior (graduate or GED), college student or technical school student with a bleeding disorder, or the child, spouse or guardian of a person with a bleeding disorder. Must receive treatment in Tennessee. Must have a GPA of 2.5 or higher.Deadline: May 1Contact: Tennessee Hemophilia & Bleeding Disorders Foundation Scholarship Committee203 Jefferson St.; Smyrna, TN 37167615.220.4868 or 888.703.3269www.thbdf.org

Education Advantage Scholarship ProgramAmount: Varies. Up to $15,000 per yearCandidate: A person diagnosed with hemophilia ADeadline: To be announcedContact: Scholarship America877.544.3018Baxter@scholarshipamerica.orgwww.myeducationadvantage.com

George and Linda Price ScholarshipAmount: Two $2,500 scholarshipsCandidate: People with bleeding disorders and their siblings or parents who are active members of the Hemophilia Association of the Capital Area living in Northern Virginia, Washington DC or Montgomery or Prince Georges Counties in Maryland. Must be high school seniors; college freshmen, sophomores and juniors; college seniors planning to attend graduate school; or students enrolled in graduate school.Deadline: May 1Contact: The George and Linda Price ScholarshipHACA; 10560 Main St., PH 4; Fairfax, VA 22030-7282hacaccares@aol.comwww.hacacares.org

Scholarship Opportunitiesfor the Bleeding Disorder Community

Note: Deadlines and listed scholarship information may change after the first of the year. Please check the websites for the most current information.

Georgia Northway Memorial ScholarshipAmount: Not specifiedCandidate: High school senior with a bleeding disorder or a siblingDeadline: First Thursday in AprilContact: Truman Heartland Community Foundation, Commerce Bank Building300 North Osage; Independence, MO 64050800.431.7960www.thcf.org/grants

Gina Stack ScholarshipAmount: Up to $1,500Candidate: People with bleeding disorders and their immediate family members who are entering a degree program with a focus on the healthcare/medical profession.Deadline: August 20Contact: Gina Stack Memorial Scholarship Programc/o TSBDF; 635 W. Seventh St, Suite 407Cincinnati, OH 45203

Great Lakes Hemophilia Foundation Education ScholarshipAward: Various scholarships from $500 to $2,000Candidate: Wisconsin residents or attending Wisconsin HTC. Also targets parents of children with bleeding disorders who, through career advancement, can better meet the financial needs of caring for their child.Deadline: May 1Contact: Great Lakes Hemophilia Foundation638 N. 18th Street, Suite 108; Milwaukee, WI 53233414.257.0200 or 888.797.4543

Hemophilia Federation of America (HFA)Amount: Between one and three $1,500 scholarshipsCandidate: Person with hemophilia or vWD attending any accredited 2- or 4-year college, university or vocational/technical school in the U.S.Deadline: April 30Contact: Hemophilia Federation of America (HFA)210 7th St. SE, Suite 200B; Washington, DC 20003202.675.6984 or 800.230.9797www.hemophiliafed.org

Hemophilia Foundation of Michigan Academic ScholarshipAmount: Two $1,500 scholarshipsCandidate: Michigan residents with a bleeding disorder or their family members.Deadline: March (applications available in January)Contact: Hemophilia Foundation of Michigan905 West Eisenhower Circle, Suite 107Ann Arbor, MI 48103734.332.4226 or 800.482.3041www.hfmich.org

Hemophilia Foundation of Minnesota/DakotasAmount: Number and amount varies; average awards $1,000-$2,000 eachCandidate: Minnesota, North or South Dakota residents and/or a patient of one of the HTCs in these states with an inherited bleeding disorder pursuing a course of post-high school education.Deadline: May 30Contact: Hemophilia Foundation of Minnesota/Dakotas750 South Plaza Drive, Suite 207Mendota Heights, MN 55120651.406.8655 or 800.994.4363www.hfmd.org

Hemophilia of Iowa Scholarship FundAmount: Up to $1,500Candidate: A member of Hemophilia of Iowa who has a bleeding disorder or an immediate family member. Must be enrolled in a degree-seeking program at an accredited U.S. college, university or trade school.Deadline: March 31Contact: Hemophilia of Iowa Scholarship Fund, c/o Shane Kelley22930 20th Street; Fairbank, IA 50629shanekelleyatssckelley@iowatelecom.netwww.hemophiliaofiowa.com

HFA Artistic Endeavors ScholarshipAmount: $1,500Candidate: Person with a bleeding disorder not necessarily attending college. Scholarship can be used for producing a play, writing a book, painting, publishing or another artistic endeavor. Imagination and portfolio required.Deadline: April 30Contact: Hemophilia Federation of America (HFA) (See Hemophilia Federation of America)

HFA Parent Continuing Education ScholarshipAmount: $1,500 Candidate: Parent of a school-age child with a bleeding disorder. For use in furthering the parent’s own education.Deadline: April 30Contact: Hemophilia Federation of America (HFA) (See Hemophilia Federation of America)

HFA Sibling Continuing Education ScholarshipAmount: Three $1,500 scholarshipsCandidate: Sibling of a school-age child with a bleeding disorder. For use in furthering the sibling’s own education at a college, university or trade school.Deadline: April 1Contact: Hemophilia Federation of America (HFA)(See Hemophilia Federation of America)

Huey and Angelina Wilson ScholarshipAmount: 15 scholarships of $1,000 per semesterCandidate: Louisiana residents with a bleeding disorder enrolling in or attending a Louisiana accredited college or university; full time student in an undergraduate program. Applicant qualifies for TOPS (Tuition Opportunity Program for Students) offered by the State of Louisiana, or would have qualified had the program existed when applicant entered college. Deadline: June 15 and December 30Contact: 800.749.1680www.louisianahemophilia.org

Joshua Gomes Memorial Scholarship FundAmount: Several scholarships of $1,000 Candidate: Individuals with HIV/AIDS accepted into or enrolled in a college or university in the U.S. Deadline: To be announcedContact: Joshua Gomes Memorial Scholarship Fund; 2700 South Emerson Street; Englewood, CO 80113303.761.3055www.joshuagomes.org

The Kevin Child ScholarshipAmount: $500 and $1,000Candidate: Person with hemophilia or vWD. Must be a high school senior planning to attend college, university or vocational school, or a college student pursuing post-secondary education.Deadline: June 27Contact: Renee LaBrew, Dept. of Finance, Administration & MISThe National Hemophilia Foundation116 West 32nd Street, 11th FloorNew York, NY 10001-3212212.328.3700 or 800.424.2634Or: Mary Child Smoot, 203.968.2776

Lone Star Chapter Scholarship ProgramAmount: Six $1,000 scholarshipsCandidate: Must have a documented bleeding disorder and be a resident of South Texas. Must be a high school senior or have a GED or be currently enrolled in an accredited college, university or vocational school.Deadline: To be announcedContact: Lone Star Chapter of the NHF17414 Fairgrove Park Drive; Houston, TX 77095713.686.6100 or 888 572.6431debbiedelariva@yahoo.com

Louisiana Hemophilia Foundation ScholarshipAmount: Two $500 per semesterCandidate: Louisiana residents with hemophilia or other bleeding disorders seeking higher education at a college, university or trade school. Deadline: June 15Contact: Scholarship Committee c/o Libby Fisackerly;

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Scholarship Opportunities for the Bleeding Disorder Community (continued)

3636 South Sherwood Forest Blvd, Suite 450Baton Rouge, LA 70816800.749.1680www.louisianahemophilia.orgwww.lonestarhemophlia.org

Lyman Fisher ScholarshipAmount: Two $2,000 scholarshipsCandidate: Members of the bleeding disorder community and their families. Must have prior participation with the Virginia Hemophilia Foundation and be a resident of Virginia or planning to attend school in Virginia.Deadline: May 7Contact: Virginia Hemophilia FoundationPO Box 188; Medlothian, VA 23113-0188www.vahemophilia.org

Michael Bendix Sutton FoundationAmount: Two $2,000 scholarshipsCandidate: Person with hemophilia pursuing pre-law study.Deadline: March 30Contact: Michael Bendix Sutton Foundation c/o Marion B. Sutton; 300 Maritine AvenueWhite Plains, NY 10601

Professor Ulla Hedner ScholarshipAmount: Ranges from $2,000 to $7,000Candidate: Adults with inhibitors planning to attend or attending a college or university as a full-time student. Deadline: April 30th Contact: SevenSECURE877.NOVO.777SevenSECURE@rxcrossroads.comwww.novoseven-us.com

Project Red Flag Scholarship for Women with Bleeding DisordersAward: Two $2,500 scholarshipsCandidate: Female resident of the U.S. with a diagnosed bleeding disorder.Deadline: May 16Contact: National Hemophilia Foundation116 West 32nd Street, 11th Floor; New York, NY 10001800.424.2634 ext. 3700www.projectredflag.org

Rachel Warner ScholarshipAmount: Funds are varied and limitedCandidate: Person with bleeding disorder.Deadline: May 1Contact: The Committee of Ten Thousandc/o Rachel Warner Scholarship236 Massachusetts Avenue, Suite 609Washington, DC 20002800.488.2688

Salvatore E. Quinci Foundation ScholarshipAmount: Two $2,000 scholarshipsCandidate: Person diagnosed with hemophilia or other bleeding disorder accepted into an accredited university, college or vocational/technical school. Deadline: April 6 (Download application from the website and submit to address below.)Contact: Salvatore E. Quinci Foundation, Inc.178 Florence Street; Melrose, MA 02176www.seqfoundation.org

SevenSECURE Adult Education GrantsAmount: Grants of up to $2,500Candidate: Adults with inhibitors seeking training to help improve their career or transition to a new one.Deadline: Year-roundContact: SevenSECURE877.NOVO.777SevenSECURE@rxcrossroads.comwww.novoseven-us.com

SevenSECURE K-12 Edu-GrantsAmount: Grants of up to $500 per person per yearCandidate: K-12th grade tutoring for any consumer with hemophilia and inhibitors to help families who require additional tutoring or other forms of learning help.Deadline: Year-round

Contact: SevenSECURE877.NOVO.777SevenSECURE@rxcrossroads.comwww.novoseven-us.com

Soozie Courter “Sharing a Brighter Tomorrow” Hemophilia Scholarship ProgramAmount: Twelve $2,500 college undergraduate scholarships, and five $4,000 graduate scholarshipsCandidate: Students with hemophilia A or B. Must be a high school senior or recipient of a graduate equivalency diploma (GED), or currently enrolled in an accredited junior college, college (undergraduate or graduate) or vocational school.Deadline: June 30Contact: Pfizer888.999.2349www.hemophiliavillage.com (Programs & Services)

Together Forward Schloarship ProgramAmount: Four $2,500 scholarshipsCandidate: High school seniros or current undergraduates with hemophilia or vWD who plan to attend a 4-year college or university in the U.S.Deadline: April 1Contact: Coram Specialty Infusion Services555 17th Street, Suite 1500; Denver, CO 80202800.310.4053 or 888.699.7440www.coramhemophilia.com/scholarship

Utah Hemophilia Foundation ScholarshipAmount: Ranging from $500 to $1,500Candidate: Members of the bleeding disorders community served by the UHF and/or the HTC in Salt Lake City. This includes those who have a bleeding disorder, their spouses, children and parents enrolled or planning to enroll in a college, university, trade school or technical program.Deadline: May 12Contact: Utah Hemophilia Foundation772 East 3300 South, Suite 210Salt Lake City, UT 84106801.484.0325 or 877.463.6893www.hemophiliautah.org

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Sources: hemophiliafed.org/services/educational-scholarshipscoramhemophilia.com/scholarship

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Social networking sites like Facebook have revolutionized the way people forge new relationships and rekindle old ones. For the hemophilia community, these sites provide an ideal platform to connect with others across the globe to share experiences, information and inspiration.

Everyone, it seems, is opening a Facebook account. Even corporations have entered the social networking realm, but not just for marketing purposes. Increasingly, companies are using social networking sites to screen potential hires. If you have hemophilia and you’re looking for a job, could you be screened out of the running if you post personal health information online?

Red FlagsIn a 2009 survey of more than 2,600 hiring managers, CareerBuilder.com™, a job listing website, found that almost half of employers use social networking sites to screen potential employees.

This means that when you apply for a job, there’s a good chance that someone in human resources will snoop around the Internet looking for information about you that wasn’t necessarily on your resume — like hemophilia?

First, the good news: according to the CareerBuilder survey, several companies report hiring someone based on information they found in the candidate’s Facebook profile. Here are some of their reasons:

� The profile provided a good feel for the candidate’s personality and fit within the organization.

� The candidate was creative.

� The candidate showed solid communication skills.

Your Online Personaby Kevin Correa

Employers Are Reviewing It.Why You Should, Too.

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And the bad news: a greater percentage of companies report not hiring someone because of information they found in the candidate’s profile. Some of the reasons:

� The candidate posted provocative or inappropriate photos or information.

� The candidate posted content about alcohol or drug use.

� The candidate showed poor communication skills.

Cleaning up bad language and removing sketchy photos is easy enough. But what about references to hemophilia? What should you do about those?

Friend RequestsBarry Haarde, 44, is a member of what he calls the 3-H Club. He has hemophilia, hepatitis C and HIV. Until recently, Barry did not share that information outside of his family and close friends.

But last year, he did something he couldn’t have imagined a couple of years earlier: he joined Facebook, and let the world in on his secret.

The catalyst for the change was the 2007 death of his brother, who also had hemophilia, hepatitis and HIV.

“I felt some personal regret that I wasn’t contributing more to the community,” recalls Barry. “Now, I’m more engaged and see myself as a self-styled educator.”

The Internet — and specifically Facebook — has helped Barry connect with others in the bleeding disorder community. “A year ago, I hadn’t anticipated that I would be doing as much as I am,” he says, referring partly to the fact that he has gone from relative anonymity to having videos of his story posted on the Web for public consumption.

Though secure in his current employment (his employer is aware of his medical conditions), anxiety creeps into Barry’s mind at the thought of having to search for another job. “I’m aware that [half] of employers search the Internet for information about job seekers,” he says. “If I lost my job, I would panic. When you Google my name, all that information about hemophilia, hepatitis and HIV is out there.”

For Barry, the concern in a job hunt is no longer fear over the stigma of HIV. His real worry is that an employer would focus only on the high healthcare costs associated with his medical conditions, rather than on his qualifications as a candidate.

In spite of this risk, Barry has not censored the information he shares on the Web.

Self-CensorshipHemophilic Facebook users face a conundrum. On the one hand, the community benefits greatly when people like Barry openly share their experiences. On the other hand, the information they share could potentially be used against them. Given that social networking sites are such a great resource for connecting people in the bleeding disorder community, it seems contradictory to advise anyone to censor the information they share on bleeding disorders. As Barry notes, “You hate to discourage anyone from expressing who they are.”

Rather than discourage that self-expression on Facebook — even if it includes discussing hemophilia publicly — we should focus instead on helping people with bleeding disorders make informed decisions about what they post online. And we should stress that it’s not just friends who are viewing the information.

continued

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The issue of employers screening candidates via Facebook has touched a nerve beyond this community, and several grassroots efforts aim to stop the practice. Also, legislation is now under review that may eventually make the act of self-censoring medical information on Facebook unnecessary.

GINAProtection against employment discrimination under the Americans with Disabilities Act (ADA) was discussed in “Be Honest. Just Not Too Honest” (PEN Transitions, February 2009). Although ADA prevents employers from asking about a disability during the interview process, it does not directly address that employer’s acquisition of medical information gleaned from social networking sites.

In 2008, the Genetic Information Nondiscrimination Act (GINA) was signed into law. Title II of GINA prohibits discrimination in employment based on genetic information. With a few exceptions, the law deems illegal the acquisition of genetic information—for example, that an applicant has hemophilia. But lawmakers are currently working to determine if genetic information acquired from Facebook will be prohibited or exempted under the law. In other words, it’s unclear if a potential employer has broken the law simply by looking at Barry’s Facebook page and learning that he has certain medical conditions.

Final Title II regulations were expected in May 2010, but have been delayed.

Private vs. PublicEven if you don’t talk about your hemophilia in your Facebook profile, it’s a good idea to give your account the once-over. What does it say about you? What might

a stranger reading your profile think? This guy really has his head screwed on straight! Or, what a disaster!

Does your profile need an overhaul?

Until you’ve thoroughly evaluated the possible consequences of sharing any private information on Facebook, especially about your bleeding disorder, it’s a good idea to max out your privacy settings, giving the public as small a window into your personal life as possible. In the online world, once the genie is out of the bottle, it’s hard to stuff it back in.

Barry doesn’t envy the privacy decisions many younger guys will face. “Young men just entering the job market must really consider how they want to approach the issue. They have to think very carefully about what they want share.”

This is a complex question, and there isn’t a one size fits all remedy. Talk it over with friends, family and your HTC

staff to help find a solution that works best for you.

Reprinted courtesy of LA Kelley Communications, 2010

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Brian Cisneros, 45, spent half his young life in the hospital. Transfusions were the treatment choice of the day, until factor became available when he was about eight. Even though it changed his life dramatically, pain was still a constant companion.

“The problem was that I would have to wait for my father to get home from work so he could take me to Children’s Hospital in downtown Los Angeles to get infused,” Brian explains. “It wasn’t until probably a year later that they taught my father how to infuse me and we started with the home program. My mother would try to infuse me so I wouldn’t have to wait all day in pain, but she wasn’t able to get the vein. Eventually — I think I was 10 years old — I got tired of waiting for my father to come home from work and taught myself how to do it.”

Although the frequent joint bleeds would result in knee replacements in adulthood, the more people told Brian he couldn’t do something, the more he challenged their assumptions. Brian grew up in Los Angeles and spent much of his time at the beach, surfing, swimming and riding his bike. He also liked to play sports.

“I did a lot of things I wasn’t supposed to do that Mom and Dad never knew about. I just wanted to be a normal kid, and for the most part I was.”

Brian’s family had a history of bleeding disorders, so his parents weren’t stunned by the news that their infant had hemophilia. Brian has cousins and a nephew with hemophilia, as well as a 17-month-old grandson. His daughter is a carrier. But toddler years are much different now than they were when Brian was that age.

“The more negative things I heard about hemophilia, the more I wanted to challenge them,” he says. “One thing I got into in early high school was weight training. At that time they discouraged lifting heavy weights. I found that it made my joints feel better. The bleeds weren’t as painful and severe. And now they recom-mend weight training to build up the muscles around the joints. In my later teenage years, I could pretty much guarantee that one of my elbows would have a bleed every week or two. When I started the weight training that changed to every two months. The muscles around the joint were getting stronger.”

The damage to his joints from a life of bleeds, however, took its toll by the time Brian was in his mid-30s. He was in constant pain and walked with a limp. He could no longer enjoy the outdoor activities he had before. In fact, he had to quit his job as a medical technologist because he couldn’t be on his feet as much as the posi-tion demanded. Brian had one knee replacement in 2005 and the other in late 2009.

“I sometimes have a tired ache in my knees if I’m over-doing it, but that doesn’t compare to the constant throbbing pain that was with me from the minute I woke up in the morning.”

Brian is back on the job, doing work that satisfies a child-hood curiosity. He always wondered, during all those hospital stays, why the nurses drew blood and what they did with it. Rock climbing may not be in his future (but with Brian, who knows), but life is good. He’s able to enjoy his family and play with that little grandson without the pain that was his constant companion.

Brian CisnerosQuietly Challenging the Status Quo

by Valerie Hansen

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FDA Approves NovoSeven® RT in 8mg Vial SizeAugust 10, 2010 — Novo Nordisk announced that the U.S. Food and Drug Administration (FDA) has approved NovoSeven® RT (Coagulation Factor VIIa [Recombinant] Room Temperature Stable) in an 8mg vial size, making the hemophilia A or B with inhibitors treatment available in 1, 2, 5 and 8mg vials. The 8mg vial allows a rapid initiation and administration of this medication for those patients who need a larger dose. In addition, FDA has also approved the extension of shelf life for all vial sizes from 24 months to 36 months at room temperature (at or below 77 degrees Fahrenheit).

Source: hemophiliafed.org

Pfizer Receives FDA Approval for Prefilled Dual-Chamber U.S. Food and Drug Administration (FDA) has granted approval for the use of a Prefilled Dual-Chamber Syringe for administration of XYNTHA® Antihemophilic Factor (Recombinant) Plasma/Albumin-Free to hemophilia A patients. XYNTHA is an injectable recombinant factor VIII product previously approved by the FDA for both the control and prevention of bleeding episodes and surgical prophylaxis in patients with hemophilia A. XYNTHA does not contain von Willebrand factor and, therefore, is not indicated in von Willebrand disease.

Source: hemophiliafed.org

PPTA Urges CMS for Appropriate Hospital Outpatient Reimbursement September 7, 2010 — The Plasma Protein Therapeutics Association (PPTA) recommends that the Centers for Medicare and Medicaid

Services (CMS) finalize its Proposed Rule regarding reimbursement to better ensure patient access to vital medicines in the hospital outpatient setting.

Specifically, for CY 2011, CMS proposes to set the payment level of separately payable non-pass-through drugs and biologicals, which include most plasma protein therapies, at average sales price (ASP) plus 6 percent. PPTA supports this proposal, believing that by setting payment rates at no less than ASP plus 6 percent, CMS will help ensure at this time that hospital outpatient departments remain a viable option for beneficiaries to receive therapies such as alpha-1 proteinase inhibitor, blood clotting factors and intravenous immune globulin (IVIg).

Furthermore, the proposed payment rate for hospital outpatient departments would put such products on par with the rates paid for pass-through drugs and biologicals in the physician office setting, thus better assuring Medicare patients that they will have access to their necessary medications in either site of service.

“By matching payment levels in both the hospital outpatient department and the physician office, the choice of setting would be driven by clinical, not financial considerations, as it should be,” said Julie Birkofer, Senior Vice President, PPTA North America.

Additionally, PPTA praised the agency’s proposal to continue reimbursing hospitals for the “furnishing fee” for blood clotting factors, recommending that the proposal be made final.

Source: pptaglobal.org

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Lab Rats Could Enhance Hemophilia ResearchSeptember, 2010 — Investigators from the Yale School of Medicine (YSM) have discovered of a new animal model for future hemophilia A research-lab rats. The lead investigator of the study was Carmen Jane Booth, DVM, PhD.

Booth and her colleagues made their discovery among a previously healthy colony of inbred lab rats that began showing symptoms of hemophilia, including bruising, prolonged bleeding from minor wounds and swollen joints. Once environmental factors were ruled out, the researchers suspected an inherited bleeding disorder. They sequenced the rats’ DNA and found a mutation similar to the one responsible for hemophilia A in humans. Additional tests confirmed that the rats had decreased levels of factor VIII, consistent with a diagnosis of hemophilia.

“First, the location of the mutated gene [for hemophilia A] is different than it is in other animals, so both males and females are affected equally,” said Peter W. Marks, MD, PhD, an associate professor at YSM. “Rats are also a nice size, large enough to test a pump and other treatment methods that wouldn’t quite work on a mouse.”

“Ultimately, we plan to translate this model for use in developing gene therapies and evaluating novel therapeutics for treating people with hemophilia A,” concluded Booth.

Source: hemophilia.org

Long Half-Life May Reduce Dosing in Hard-to-Treat HemophiliaBuenos Aires, July 2010 — A drug now being tested in clinical trials may offer a less frequent dosing schedule for bleeding prophylaxis in patients with hemophilia with inhibitors researchers said here.

“The mean plasma half-life of pegylated recombinant Factor VII (N7-GP) is 15.5 hours, which means we may be able to reduce dosing from daily to at least every other day for patients with hemophilia A, hemophilia B or hemophilia with inhibitors,” Judi Moss, PhD, a clinical pharmacist with Novo Nordisk, said at her poster presentation during the Hemophilia 2010 World Congress.

“Daily administration of recombinant activated Factor VII can substantially reduce bleeding in hemophilia A or hemophilia B patients with inhibitors,” she explained. “N7-GP is designed to provide bleeding prophylaxis with less frequent dosing.”

“The safety, tolerability and pharmacokinetics seen in this trial and previous preliminary human studies were the bases for extending development of N7-GP into phase II clinical trials which are ongoing,” Moss told MedPage Today.

Source: medpagetoday.com (Writer Ed Susman)

“We develop a close relationship with our patients,” Dr. Luck adds. “We’ve known many of them a very long time. When you have a patient who has trouble walking across a room and has a very limited range of motion end up with a joint that enables them to be a full community ambulator, that is very satisfying.”

With all the precautions, preparations and consider-ations, then, the fact remains that joint replacements

for people with hemophilia can provide an amazing improvement in their quality of life. They have enabled fathers to play with their children and grandchildren for the first time, allowed those forced to take disability the chance to return to their careers, and put wheelchairs out of business.

Hemophilia and Joint Replacement (continued from page 5)

Kids’ CornerKids’ CornerFactorQuest is available on CD!For copies of the FactorQuest game CD, email communications@coramhc.com.

You can also play FactorQuest online at coramhemophilia.com/patients.

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