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Patients and Families

CSL Behring demonstrates its commitment to patients by sponsoring programs that support patient group activities that benefit people with bleeding disorders, primary immune deficiencies and alpha1-proteinase inhibitor deficiencies.

Our Commitment to People Who Rely On CSL Behring Therapies

At CSL Behring, we know that our mission and our business are all about our customers. Therefore, we demonstrate our commitment to the communities we serve in ways that go beyond the treatments we provide.

CSL Behring resources and services help people and their families manage the daily challenges of living with a serious medical condition. We consider it our duty to:

  • Support and drive medical research that aims to improve treatment options for the people we serve
  • Sponsor programs and support activities that benefit people who are living with a bleeding disorder, primary immunodeficiency, alpha-1 antitrypsin deficiency, hereditary angioedema, or other rare and serious medical conditions that our therapies treat
  • Work with government authorities to help ensure that patients have access to appropriate care, enhance education and outreach efforts in the therapeutic areas CSL Behring products treat
  • Develop and operate educational and product Web sites that provide accurate, reliable information

Further, CSL Behring works closely with third-party organizations on a range of issues that affect them, providing everything from education to advocacy. We also work with legislators and regulators around the world to help ensure that patients can get access to safe, high-quality plasma-derived and recombinant products that are affordable and/or appropriately reimbursed.


Patient Programs

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Patient Assistance Program

We provide our medically necessary therapies to qualified patients who are uninsured or underinsured, or who otherwise cannot afford them, through our Reimbursement Resource Center. We also help patients on our therapies obtain effective health insurance coverage with fair reimbursement, and help them navigate the insurance appeals process. Learn more

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CSL Behring Assurance

This program helps people who rely on our therapies to continue receiving these vital treatments during lapses in their health insurance coverage. Learn more

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LEAD Program

We help local advocacy organizations to develop their capacity for advocacy and public initiatives. Learn more

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Voice2Voice Program

Voice2Voice is a unique program that connects new Hizentra patients and caregivers with an experienced advocate. Voice2Voice advocates know what it's like to live with PI and have direct experience with Hizentra therapy. Learn more

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hemophiliamoms.com

This site provides illustrative stories from families dealing with hemophilia. The site includes provision access to the CSLB-supported Mom2Mom Blog, through which the moms and their families can share experiences, ask questions of one another, and offer emotional support in any manner they like, without editorial input from CSL Behring.
Learn more

Gettin' in the GameSM

Gettin' in the GameSM is a program developed by CSL Behring to help children with bleeding disorders exercise while providing an opportunity for further education about their disease state. The program is comprised of local events at which children and their families can learn sports tips from our national Gettin' in the GameSM athletes, participate in appropriate exercises and warm-up activities, and connect with other children with bleeding disorders who may share similar experiences. Learn more

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Gettin' in the GameSM Junior National Championship (JNC)

Gettin' in the GameSM Junior National Championship (JNC) was the first national golf and baseball competition designed specifically for the bleeding disorders community. The program features a series of one-day athletic competitions that give children with bleeding disorders an opportunity to compete in golf and baseball and provides education and information-sharing opportunities for participants and their parents/caregivers. Learn more

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Von U: A Community of Care

Von U is a community outreach initiative that brings together individuals affected by VWD — patients, caregivers, and healthcare providers — through outreach and educational efforts. Von U provides patient education programs, expert speakers, and special educational events. Learn more

BEN PALS

BEN PALS

A network that helps to connect patients affected by Heredity Angioedema (HAE) with other patients to share experiences, help aid with the transition from diagnosis to therapy, help to get assistance in starting therapy and establish long-term connections with peers. Learn more

CareZ

My Steps for Healthy Living

This is a free no obligation program designed exclusively for those affected by Alpha-1, encouraging participants to walk their way toward a healthier lifestyle. My Steps for Healthy Living is a part of the CSL Behring CareZ® Community.
Learn more

CareZ

CareZ®

A community of people and services that focuses on providing Alphas with the support they need to cope with their condition and live life to the fullest, assisting with questions, concerns, and physical and/or financial challenges that come with diagnosis of a chronic condition like Alpha-1–associated emphysema. Learn more

While we are passionate about these programs and the communities we serve, our focus above all is on ongoing research efforts to provide safe and effective treatments that will help these patients live longer and better lives.



Important Safety Information for Berinert

Berinert®, C1 Esterase Inhibitor (Human), is for the treatment of ongoing, acute attacks of hereditary angioedema (HAE) affecting the abdomen, face or throat in adults and adolescents. The safety and efficacy of Berinert in preventing HAE attacks have not been established.

Do not use Berinert if you have experienced life-threatening allergic reactions or severe hypersensitivity to the product. Inform your healthcare provider of all medications you are taking and of any medical conditions, especially any history of blood-clotting problems.

Blood clots have occurred in patients receiving Berinert. Tell your healthcare provider if you have an indwelling catheter, a history of heart or blood vessel disease or stroke, or have been immobile for some time. Certain medications, such as birth control pills, may also increase your risk of clotting problems.

Report to your physician or an emergency room any signs and symptoms of a blood clot, including pain and/or swelling or discoloration of an arm or leg, with warmth over affected area; unexplained shortness of breath; chest pain or discomfort that worsens on deep breathing; rapid pulse; and numbness or weakness on one side of the body.

In addition, report immediately any signs or symptoms of allergic reactions to Berinert, including hives, chest tightness, wheezing, turning blue, facial swelling and fast heartbeat.

Berinert can be self-administered if you have been trained and advised to do so by your healthcare provider. Seek immediate medical attention if an HAE attack has progressed to a point where you will be unable to prepare or administer Berinert.

If you self-administer to treat a laryngeal attack, immediately seek medical attention afterward. If you self-administer for an abdominal attack, inform your physician so that other possible causes can be ruled out.

Call your doctor right away if swelling is not controlled after use of Berinert.

Because Berinert is made from human blood, the risk that it may transmit infectious agents, including viruses and, theoretically, the Creutzfeldt-Jakob disease (CJD) agent, cannot be completely eliminated.

In clinical studies, the most serious adverse reaction reported in subjects who received Berinert was an increased severity of pain associated with HAE. In the placebo-controlled clinical trial, the most common adverse reaction reported more often among subjects who received Berinert than those receiving placebo was dysgeusia (a bad taste in mouth).

Berinert has not been evaluated in pregnant women or nursing mothers; inform your doctor if you are pregnant or are planning to become pregnant, or if you are breastfeeding or plan to breastfeed. The safety and effectiveness of Berinert have not been established in children under 12 or adults over 65 years of age.

Please see full prescribing information for Berinert, including the patient product information.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.


Important Safety Information for Humate-P

Antihemophilic Factor/von Willebrand Factor Complex (Human), Humate-P® is approved to treat and prevent bleeding in adult patients with hemophilia A (classical hemophilia). Humate-P also treats spontaneous or trauma-induced bleeding episodes in adults and children with von Willebrand disease (VWD) and prevents excessive bleeding during and after surgery in patients with mild, moderate or severe VWD. Humate-P is not known to prevent spontaneous bleeding episodes.

Do not take Humate-P if you have had extreme sensitivity or an allergic response to antihemophilic or von Willebrand factor preparations. Your doctor will monitor you for events related to abnormal blood clotting.

Humate-P is made from human blood and could contain infectious agents. The risk that these agents may transmit disease cannot be completely eliminated, but has been reduced by screening plasma donors and testing donated plasma for certain viruses, and by inactivating and/or removing viruses during manufacturing.

In studies, more than 5% of patients reported the following adverse reactions to Humate-P: allergic/anaphylactic reactions, including hives, chest tightness, rash, itching, and swelling. The most common adverse reactions after surgery were bleeding at the wound or infusion site, and nosebleeds.

Please see full prescribing information.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.


Important Safety Information for Zemaira

Alpha1-Proteinase Inhibitor (Human), Zemaira® is indicated to raise the plasma level of alpha1-proteinase inhibitor (A1-PI) in patients with A1-PI deficiency and related emphysema. The effect of this raised level on the frequency of pulmonary exacerbations and the progression of emphysema have not been established in clinical trials.

Zemaira may not be suitable for everyone; for example, people with known hypersensitivity to components used to make Zemaira, those with a history of anaphylaxis or severe systemic response to A1-PI products, and those with certain IgA deficiencies. If you think any of these may apply to you, ask your doctor.

Early signs of hypersensitivity reactions to Zemaira include hives, rash, tightness of the chest, unusual breathing difficulty, wheezing, and feeling faint. Immediately discontinue use and consult with physician if such symptoms occur.

In clinical studies, the following adverse reactions were reported in at least 5% of subjects receiving Zemaira: headache, sinusitis, upper respiratory infection, bronchitis, fatigue, increased cough, fever, injection-site bleeding, nasal symptoms, sore throat, and swelled blood vessels.

Because Zemaira is made from human blood, the risk of transmitting infectious agents, including viruses and, theoretically, the Creutzfeldt-Jakob disease (CJD) agent, cannot be completely eliminated.

Please see full prescribing information for Zemaira.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.


MTL07-12-0002 10/2012
© 2014 CSL Behring