7/17/09

Health Care Reform

Health care reform is an urgent concern of individuals living with Alpha-1.   The Association joins like-minded organizations in prioritizing health reform principals to protect the interests of those living with chronic conditions, such as Alpha-1. To view these principles, please click here.

 

6/19/09

Important protection for rare diseases included in Senate bill S 1213 introduced last week

The Alpha-1 Foundation and Alpha-1 Association is pleased to announce that recent legislation introduced in the Senate entitled the "Patient-Centered Outcomes Research Act of 2009" includes a special provision to protect rare diseases.  S 1213 addresses Comparative Effectiveness Research and is intended to be included in any Senate introduced comprehensive healthcare reform legislation.  S 1213 establishes an "expert advisory panel for rare disease" which will assist in the design of rare disease comparative effectiveness research and in the evaluation of the research studies.  Inclusion of a rare disease advisory panel will allow individuals with expertise in that particular disease state to inform the process; such as physicians, scientists, patients and manufactures.  The Foundation and Association will continue to advocate for the same type of special protection in House legislation.  

5/28/09

Airline Oxygen

All airlines that fly take off or land in the United States are now required to allow DOT-approved individually-owned Portable Oxygen Concentrators (POCs) to be carried on and used aboard the plane.  There is a new Airline Oxygen Council of America (AOCA) website that explains the rules and names the approved concentrators.  The website also explains how to report an airline that does not comply with the rules.  The COPD Foundation's COPD Help Line has agreed to accept and forward any such problems.

3/27/09

ActionAlert! Health Insurance Coverage Act Reintroduced

On February 13th, 2009, Anna G. Eshoo (D-CA) and Jim Langevin (D-RI), along with Senators Byron Dorgan (D-ND) and Olympia Snow (R-ME), introduced the Health Insurance Coverage Protection Act (H.R. 1085, S 442). The legislation to addresses the aggregate spending limits placed on insurance policies after which the policy no longer provides coverage. This issue is of particular interest to those with chronic conditions that require high cost therapies such as Alpha-1. Medical expenditures continue to outpace general inflation and the number of individuals who reach their lifetime caps has increased. To view the ActionAlert! on this legislation and how you can ask your legislators to support this bill, please click here.

3/2/09

Stimulus Package – How it affects you

President Obama signed into law the Economic Recovery and Reinvestment Act, also known as the stimulus package last week.  This package includes $10 billion in funding for the National Institute of Health (NIH). From the $10 billion, $7.4 billion is being allocated for research across NIH institutes and centers in proportion to FY08 enacted funding levels. The stimulus also includes provisions if one were to become unemployed, the government may pay up to 65% of the COBRA to help maintain your private health insurance. 

GINA Implementation Q&A Available

Below please find the link to view questions and answers about the implementation of GINA.  The questions and answers cover various aspects of the law, including its protections in relation to direct-to-consumer genetic services, diagnosed conditions, and GINA enforcement, among other topics. The information was provided by the Coalition for Genetic Fairness

To view the GINA Q&A, please click here.  

1/16/09

New Rules for Medicare Oxygen Payment Take Effect

Starting January, new rules for Medicare oxygen payment took effect. Under previous law, Medicare paid oxygen suppliers a monthly rental fee for the duration of beneficiary use of home oxygen equipment. Now Medicare reimbursements are limited to the first 36 months of rental payment. During this initial time period, Medicare beneficiaries will be responsible for a 20 percent co-pay. After 36 months, the supplier still owns the equipment and is obligated to continue to service the equipment at no cost to the beneficiary for an additional two years. The patient co-pay ends after 36 months of rental payment.

 

Oxygen suppliers are required to service the equipment over five years–the estimated life cycle of oxygen equipment–including maintenance and repairs. Limited maintenance payments will be made for trans-filling and concentrator systems after the 36-month period. Medicare will continue to make monthly payments for delivery of liquid or compressed oxygen. At no point does the ownership of the oxygen equipment automatically transfer to the patient.

 

At the end of five years, the equipment can be replaced, which would start a new cycle of 36-month rental payments and beneficiary co-pays.

 

These new rules appear to causing confusion in both the oxygen provider and patient community. There are anecdotal reports that some oxygen suppliers are sending information to oxygen users, implying that certain types of oxygen equipment are no longer available due to the new rules. Home oxygen will continue to be available to Medicare beneficiaries. For more information on the new oxygen payment rules, please visit the CMS Web site at http://www.medicare.gov/Publications/pubs/pdf/11405.pdf.  

 

If your supplier refuses to comply with the rules please call Medicare immediately at 1-800-Medicare (1-800-633-4227) or, for users of TTY, 1-877-486-2048.  Attached please find additional information on the new rules.