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 Issue # 24                                                                                             December 2012 

Alpha-1 Advocates are a Powerful Force 

Advancing public policies that are relevant to issues that affect those with Alpha-1       

Diane_Legislator Diane Cameron from New York met with an Assemblyman from her state's 135th district. During this meeting, she shared her story, her younger brother's journey of being undiagnosed for six years, her family's history of Alpha-1 related lung disease and more.  


Sequestration will slash critical health and scientific research  

Sequestration logo The potential automatic spending cuts, or sequestration, scheduled to take effect in January 2013, will be devastating for patients as well as the future U.S. leadership of research and development. Sequestration would slash federal investments in critical health, scientific, medical and biological research aimed at discovering treatments, moving safe and effective new medicines to market, and creating the innovations to grow our economy.

Ask your lawmaker to support increased investment in COPD research
New data that highlights the need to address the many challenges faced by the COPD and Alpha-1 Community

Ling Infection On November 21st the Centers for Disease control (CDC) published the first ever state-by-state data on the impact of COPD, the third leading cause of death in America. The data shows that over 6 percent of Americans are diagnosed with COPD and furthermore, the National Heart, Lung & Blood Institute (NHLBI) estimates another 12 million are experiencing symptoms but have not been diagnosed. There is no cure for COPD, but early diagnosis and current treatments can improve the quality of life for millions of Americans and save billions in preventable healthcare expenditures. (More than 12 million people have been diagnosed with COPD in the United States, and about 3 percent of them are predicted to have Alpha-1.) Despite being a major public health issue, COPD research still receives substantially less research funding than other diseases. An increase in funding for COPD research could help develop early diagnosis strategies, new treatment regimens, and improved disease management programs.   

Alpha-1 Sign-on Letter 

Expressing concern about the impact of the pending sequestration mandated by the Budget Control Act 

Sign-On Letter This month, the Alpha-1 Association, Alpha-1 Foundation and other like-minded organizations that represent patients, scientists, and health care providers signed onto an "Ad Hoc Group for Medical Research" letter to Congress that expressed concern about the impact of the pending sequestration mandated by the Budget Control Act (BCA) on medical research supported by the National Institutes of Health (NIH) and the subsequent negative consequences for the health of all Americans.  

Banning Discrimination Against those with Pre-Existing Conditions 

Ensuring care for those whom coverage would otherwise be unaffordable 

Obama_Signing_1099 Last month, the White House moved forward to implement provisions in the health care law that would make it illegal for insurance companies to discriminate against people with pre-existing conditions like Alpha-1. The provisions also make it easier for consumers to compare health plans and employers to promote and encourage employee wellness.  

A Guide to Medicaid Appeals

Help with describing Medicaid's appeals system, the hearing process and more 

Medicaid Appeals As coverage expands under healthcare reform and efforts proceed to integrate services for dual eligibles, who are enrolled in both Medicare and Medicaid, protections through the appeals process will be increasingly important. This guide describes Medicaid's appeals system, including the fair hearing process and the process required for Medicaid managed care organizations.

Recognizing Alpha-1 Awareness in the States 

A Proclamation signing at Iowa Governor Terry E. Branstad's Office   

Iowa's Proclamation The Alpha-1 Association is fortunate to have a community that is both enthusiastic and eager to share their stories and advocate on key issues. Frank Loutsch from Iowa organized a formal Alpha-1 Awareness Month proclamation signing at his Governor's office. This signing aided in increasing both awareness and detection of Alpha-1 as a serious hereditary and misdiagnosed condition.

Click here to see other states that recognized the need for Alpha-1 Awareness.

Decision Day for States to Set Up Their Own Insurance Exchanges 

Open enrollment for exchange plans start October 2014 

Online Exchange December 14, 2012 is decision day for states to notify Washington if they will set up their own insurance exchanges under the federal health care law. Half the states have said that they will participate in some way. An Exchange is a mechanism for organizing the health insurance marketplace to help consumers and small businesses shop for coverage in a way that permits easy comparison of available plan options based on price, benefits and services, and quality.  
Protect Research Funding
Support COPD research
Banning Discrimination Against those with Pre-Existing Conditions
A Guide to Medicaid Appeals
Alpha-1 Awareness in the States
Decision Day for States
Become and Advocate

Need Help Finding Community Resources?

Barbee Bennington, the Alpha-1 Association's Support Group & Program Coordinator is available to answer questions regarding the Private Health Insurance Toolkit. She is the Association's point of contact for anyone who has reimbursement or access to care issues and is available to assist in helping you find resources and existing programs both in the Alpha-1 Community and general public on issues such as prescription drug cost assistance, advocacy groups and government programs. She can be contacted at either bbennington@alpha1.org or 1-855-351-6610.


 Legislation was introduced (H.R. 6585) that would expand the temporary federal high-risk pools created by the Affordable Care Act (ACA) to include U.S. territories like the Virgin Islands, Puerto Rico, and Guam.

Originally, Congress allocated funds for the Pre-Existing Condition Insurance Plan (PCIP) program but limited participation solely to the 50 states and the District of Columbia.