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The Alpha-1 Alliance supports federal funding for stem cell research December 18, 2001 Alpha1-Antitrypsin Deficiency (Alpha-1) is a serious and life threatening genetic disorder that results in lung and liver disease. Embryonic stem cell research may hold the promise of a cure for Alpha-1; therefore, the Alpha-1 Alliance endorses the National Institutes of Health (NIH) Guidelines for the use of embryos developed for invitro fertilization in stem cell research. Many scientists believe that embryonic stem cells have the ability to transform into virtually any kind of tissue, and may hold hope for treating illnesses and enhancing the lives of those suffering with genetically based diseases such as Alpha-1. The NIH solicited comments on the draft Guidelines and received over 50,000 responses from members of Congress, patient advocacy groups, scientific societies, religious groups and private citizens. These comments ranged from requests for the expansion of oversight of the informed consent and IRB review to separation of fertility treatment and abortion from research. The final Guidelines reflect the careful culmination of this publicly vetted process and provide sound oversight of federal funding for stem cell research. The Alliance supports federal funding in order to allow stem cell research to be regulated under federal ethics and public disclosure rules, believing that the government should participate in the ethical debate that occurs around all new biotechnology. In a letter to President Bush, eighty Nobel laureates maintained that a ban on stem cell research would put the U.S. at a competitive disadvantage in biotech research. And polls conducted by the Juvenile Diabetes Research Fund have shown that a significant majority of the American public supports embryonic stem cell research. For individuals suffering with genetic disease, it is challenging to accept that scientific progress will be slowing down, privately funded research will not have appropriate oversight and that the support of the majority of the American public may be thwarted in the decision making process. Halting the promise of a cure is untenable for individuals suffering with the devastating effects of progressive lung and liver disease. For this reason the Alpha-1 Alliance urges that the NIH Guidelines be reinstated and that applications for stem cell research be accepted and reviewed as set forth in the Guidelines. What is Alpha-1? Alpha1-Antitrypsin Deficiency (Alpha-1) is a genetic disorder that results in devastating and often fatal liver and lung disease. The liver failure caused by Alpha-1 can affect individuals of all ages, and is particularly severe in newborns often leading to liver transplantation with its attendant risks and lifelong morbidity. Alpha-1 is the second leading cause of pediatric liver transplantation in the United States. Individuals with the lung destruction of Alpha-1 demonstrate precocious loss of lung function and irreversible deterioration of lung tissue with symptoms including severe shortness of breath and repeated lung infections often necessitating full time use of supplemental oxygen. Therapy consists of augmentation of the Alpha1-Antitrypsin protein via weekly infusions of a plasma derivative. In the absence of therapy, the pulmonary destruction of Alpha-1 tends to be relentlessly progressive, often leading to premature respiratory death in affected individuals. For those stricken with pulmonary impairment the onset of Alpha-1 is generally between the third and fifth decades of life causing disability leading to loss of employment, frequent hospitalizations, family disorganization, and the suffering known only to those unable to catch their breath. Lung transplantation, with all its associated risks and costs, is the most common final option. What is the Alpha-1 Alliance? The Alliance is a partnership between the Alpha-1 Foundation and the Alpha-1 Association, providing a common voice to address issues of joint interest and concern. The Alpha-1 Foundation, founded in 1995 is a not-for-profit organization dedicated to providing the leadership and resources that will result in increased research, improved health, worldwide detection, and a cure for Alpha1-Antitrypsin Deficiency (Alpha-1). The Foundation provides the infrastructure to promote research and the development of new therapies for improving the quality of life for those diagnosed with Alpha-1. A Grants Award Program funds basic science and clinical research awards, postdoctoral fellowships and investigator initiated awards. 1-877-228-7321 http://www.alphaone.org The Alpha-1 Association is a nonprofit, membership organization founded in 1991 to represent the patient community. Its mission is “to identify those affected by Alpha1-Antitrypsin Deficiency and to improve the quality of their lives through support, education, advocacy and research”. The Association is committed to an early detection system with support and education for coping with this genetic disorder. This international organization has a worldwide network of support groups, a scholarship program, an array of educational materials, and a peer guide program that mentors newly diagnosed individuals. 1-800-521-3025 http://www.alpha1.org
Contact: Alpha-1 Alliance: Bettina
Brown Irvine Robert
Sandhaus, M.D., Ph.D.
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