About Us
Fact Sheet
AlphaNet is a unique patient-driven business model that pushes advocacy to a new level, through customized patient care and innovative disease management, while funding research for a cure.
HISTORY:
AlphaNet, Inc. was founded in 1995 by three individuals with Alpha-1. They wanted to coordinate and consolidate needed services for Alphas while funding the search for a cure. At that time, Alpha-1 was even less understood than it is today and they fought an uphill battle to gain support and understanding. The concept was to keep any financial resources expended by Alphas, within the Alpha community – channeling “profits” into needed medical research. AlphaNet empowers those diagnosed with Alpha-1 to take charge and improve their lives. Overriding all goals is finding a cure for Alpha-1 and AlphaNet’s commitment to fund that search.
WHAT IS ALPHA-1?
Alpha-1 Antitrypsin Deficiency is one of the most common serious genetic disorders worldwide. The disorder can cause severe lung and/or liver disease and is a leading reason for lung transplantation in adults and liver transplantation in young children. An estimated 100,000 Americans have the disorder, yet only six percent have been accurately diagnosed. Those with Alpha-1 call themselves Alphas.
BACKGROUND:
AlphaNet is incorporated in Florida as a not-for-profit health management corporation and is registered with the IRS as a 501©(3) charitable organization.
SERVICE AREA:
United States, Puerto Rico, US Virgin Islands
BOARD COMPOSITION:
11 members, 9 of whom are Alphas
EMPLOYEES:
35, 27 of whom are Alphas
SERVICES:
PATIENT & CAREGIVER SUPPORT – Twenty-five AlphaNet Patient Services Coordinators, all Alphas
themselves, provide a wide variety of assistance on topics related to health management and coping
skills for living with Alpha-1.
24 HOUR, TOLL-FREE HELP LINE
PHYSICIAN CONSULTATIONS – for patients and/or consulting physicians with AlphaNet’s Medical Director, who is an internationally respected expert on Alpha-1.
NURSING STAFF – available for direct consultation to patients and nurses and provides CEU education to nurses and training to nursing agencies for infusion services.
HEALTH MANAGEMENT – comprehensive disease management program includes the “Big Fat Reference Guide” for patients and physicians, with information about diagnosis, risk factors, nutrition, coping with Alpha-1, fitness as well as other information and health tips.
PATIENT ADVOCACY – actively working on national legislative issues of concern to the Alpha-1 community, including: access to Pulmonary Rehab, access to Medicare benefits, Medicare payor issues and promoting Alpha-1 research.
FINANCIAL ISSUES – consultation on payor issues, personal financial obligations, Medicare, Medicaid reimbursement, private insurance guidelines and direction for patient assistance programs.
EDUCATION – patients and caregivers can participate in a wide variety of educational programs throughout the year, in locations across the U.S. Specially tailored CEU and CME training programs are available for medical professionals.
THE ALPHANET RESEARCH PROGRAM – AlphaNet designs and funds research that benefits the AlphaNet community. Examples are the year-long Exacerbation Study, the two-year Outcome Study to evaluate the effectiveness of AlphaNet’s Disease Management and Prevention Program, and the current AlphaNet study, the Step Forward Study, designed to evaluate the effects of diet and exercise on the health of Alphas.
SUPPORT OF CLINICAL RESEARCH – AlphaNet facilitates clinical trials of new treatment options by identifying
qualified study sites and researchers, training of study staff, supporting study enrollment, monitoring data, completing FDA documentation and performing quality assurance functions.
FUNDING RESEARCH & COMMUNITY SUPPORT – AlphaNet consistently provides funds to support research for a cure as well as important programs for educational and financial support in the Alpha-1 community.
COMMUNICATION AND COORDINATION WITH PHARMACY & INFUSION SERVICES – AlphaNet staff work to assure that a
customized medical supply inventory is always available to facilitate safe, timely therapy administration, convenient to the needs of each Alpha.
SUPPORT SERVICES – AlphaNet provides support programs to individuals receiving augmentation
therapy with Prolastin® (Prolastin Direct) and Zemaira® (CSL Behring).
KEY ACCOMPLISHMENTS:
- Introduced contract and wholesale pharmaceutical programs
- Reduced cost of initial augmentation therapy by 30 percent
- Launched clinical trials
- Funded special Alpha community programs
- Established and trained a nationwide network of Coordinators (all Alphas), to counsel, educate and assist approximately 2,700 Alphas
- Developed connections with national and international scientific community
- Established relationship as service-provider in Prolastin Direct program
- Established relationship as service-provider for patients recieving Zemaira
- Completed Exacerbation Study to evaluate patients with COPD
- Developed and implemented Disease Management Program
- Completed Outcome Study to evaluate AlphaNet’s Disease Management and Prevention Program
- Completed production of the Big Fat Reference Guide and single topic Skinny Little Reference Guides with information gathered from the BFRG.
- Developed and implemented CME/CEU clinical training modules for nurses, physicians and respiratory therapists
- Donated more than $1.7 million to the Alpha-1 Association
- Donated more than $27 million to the Alpha-1 Foundation to support medical research