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Zemaira update

Zemaira update
Tuesday, December 4, 2018
The Alpha-1 Foundation was informed by CSL Behring that Zemaira, their prescription drug for augmentation therapy for the treatment of Alpha-1 Antitrypsin Deficiency (Alpha-1), returned to normal distribution on Monday, December 3rd, 2018. This is good news for patients who rely on this product, especially as we head into the cold and flu season.  The Foundation bases its knowledge of...

PSI caps 2016 patient assistance for healthcare insurance premiums and copays, offers Alphas with more expensive plans help in reviewing choices

Monday, October 19, 2015
Patient Services, Inc. (PSI), a not-for-profit organization that provides financial assistance to help Alpha-1 patients and families pay for healthcare insurance premiums and copayments, is capping assistance for 2016. Effective Jan. 1, 2016, PSI...

Summit to address care for people with chronic respiratory conditions

Friday, October 16, 2015
The American Association for Respiratory Care (AARC) will host its first annual Respiratory Patient Advocacy Summit on Nov. 6, 2015 in Tampa, Florida. The purpose of the meeting is to advance the quality of life and care for people with chronic...

MASAC: Alphas should be skeptical of stem cell "therapy" claims, participate only in approved clinical trials

Thursday, October 15, 2015
The Medical and Scientific Advisory Committee (MASAC) of the Alpha-1 Foundation  has drafted a letter cautioning Alphas with lung or liver disease against unproven stem cell and other cell-based "therapies" being advertised on the Internet....

Alpha-1 and COPD foundations express support for Califf as new FDA commissioner

Thursday, October 15, 2015
The Alpha-1 Foundation and COPD Foundation today issued a statement of support for Robert Califf, MD, as the new commissioner of the U.S. Food and Drug Administration (FDA). Califf, 63, joined the FDA as deputy commissioner in March after more...

Patient organizations recognize Plasma Awareness Week

Wednesday, October 14, 2015
The Plasma Protein Therapeutics Association (PPTA) and its member companies are sponsoring International Plasma Awareness Week, October 11-17. The effort is designed to: •    Raise global awareness about source plasma...

Liver-affected Alphas tell the FDA they want better treatments now

Monday, October 12, 2015
Patients and caregivers at the U.S. Food and Drug Administration's (FDA’s) Patient-Focused Drug Development meeting on Alpha-1 Antitrypsin Deficiency are desperate for treatments for liver-affected patients, whose only option is a...

FDA seeks more comments about Alpha-1 on its website

Tuesday, October 6, 2015
The U.S. Food and Drug Administration (FDA) has asked Alphas and their supporters to post written comments about their experiences with Alpha-1 on its website. The comments will be added to those that were presented in person and online to the...

COPD Foundation and ViiMed® launch interactive healthcare program

Friday, October 2, 2015
The COPD Foundation and ViiMed announced the launch of COPD360coach this week at the European Respiratory Society International Congress in Amsterdam. COPD360coach is the brainchild of a Crowdshaped event co-hosted by the COPD Foundation and...

Alphas, caregivers pack FDA meeting to express their concerns and the need for new treatments

Thursday, October 1, 2015
Alphas and Alpha-1 caregivers packed a public meeting held by the U.S. Food and Drug Administration (FDA) Tuesday, Sept. 29, in Silver Spring, MD, to discuss Patient-Focused Drug Development for Alpha-1 Antitrypsin Deficiency (Alpha-1). Charlotte...

Brother’s death a wake-up call for Alpha nurse's healthy lifestyle

Monday, September 28, 2015
Even though she was diagnosed with Alpha-1 as a child, April Greener never had any symptoms. Therefore, she never thought too much about it.  Her outlook changed drastically when her brother, Scott, 41, died of Alpha-1 liver disease nearly...

Alphas to "make their voice heard" at FDA

Monday, September 21, 2015
Jesse Young suffered from liver failure, and desperately needed a transplant. Family members were tested, but none qualified as a donor. His then-girlfriend, Rachel, insisted on taking the test herself. Reluctantly, he agreed. A couple of weeks...

Protect yourself against Medicare fraud

Wednesday, September 9, 2015
The next open enrollment season for Medicare is about to begin soon (Oct. 15 to Dec. 7). That means fraudsters and identity thieves will increase their efforts to obtain and abuse Medicare numbers. Shantanu Agrawal, M.D., Deputy Administrator and...

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