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Advocacy News

9/1/2010

E-Advocacy Newsletter

  • A Win for Rare Diseases 
  • COPD Initiatives 
  • U.S. COPD Coalition Membership 
  • Summer Activities 
  • A1A Sign-On Letter 

7/10/2010

E-Advocacy Newsletter

  • Action Alert 
  • Drug Development 
  • COPD Initiatives 
  • Advocacy Webinar 
  • Blood Donor Deferral Policy 
  • Breaking Barriers in Obtaining Health Care 

7/1/2010

Medical coverage for the uninsured with pre-existing conditions

The U.S. Department of Health and Human Services has announced a new Pre-existing Condition Insurance Plan that will offer coverage to uninsured Americans who have been unable to obtain health coverage because of a pre-existing health condition.

The Pre-Existing Condition Insurance Plan, which will be administered either by a state or by the Department of Health and Human Services, will provide a new health coverage option for Americans who have been uninsured for at least six months, have been unable to get health coverage because of a health condition, and are a U.S. citizen or are residing in the United States legally.

“For too long, Americans with pre-existing conditions have been locked out of our health insurance market,” said Secretary Kathleen Sebelius. “Today, the Pre-Existing Condition Insurance Plan gives them a new option – the same insurance coverage as a healthy individual, if they’ve been uninsured for at least six months because of a medical condition.”

Created under the Affordable Care Act, the Pre-Existing Condition Insurance Plan is a transitional program until 2014. In that year, insurers will be banned from discriminating against adults with pre-existing conditions, and individuals and small businesses will have access to more affordable private insurance choices through new competitive Exchanges, said the announcement.

In 2014, Members of Congress will also buy their medical insurance through Exchanges.

6/21/2010

More Medicare beneficiaries will qualify for “Extra Help


More Medicare beneficiaries will qualify for “Extra Help” with their prescription drug costs, and be eligible to pay no more than $2.50 for generic drugs and $6.30 for each brand name drug thanks to changes to Medicare’s Low-Income Subsidy Program (also known as LIS or “Extra Help”) that take effect this year. These changes make it easier than ever for people on Medicare with limited incomes to save on their drug costs.

The Centers for Medicare & Medicaid Services estimates that “Extra Help” can save eligible Medicare beneficiaries as much as $3,900 per year. It is estimated that more than 1.8 million people with Medicare may be eligible for “Extra Help,” but are not currently enrolled to take advantage of these savings.

There is no cost to apply for “Extra Help.” Medicare beneficiaries, family members,trusted counselors or caregivers can apply online at www.socialsecurity.gov/prescriptionhelp or call Social Security at 1-800-772-1213 (TTY users should call 1-800-325-0778) and ask for the Application for Help with Medicare Prescription Drug Plan Costs.

Medicare beneficiaries can also receive assistance in their local communities from their State Health Insurance Assistance Program (SHIP) online at www.medicare.gov/contacts/staticpages/ships.aspx

The donut hole is the period in the prescription drug benefit in which beneficiaries generally pay 100 percent of the cost of their drugs until they hit the catastrophic coverage. Beneficiaries who qualify for Medicare “Extra Help” do not have a donut hole.

These $250 checks will begin to get mailed out to eligible beneficiaries on June 10 and will be sent to beneficiaries soon after they enter the coverage gap. For more information on how to get your rebate check, log on to http://www.medicare.gov/Publications/Pubs/pdf/11464.pdf.

To learn more about Medicare prescription drug coverage, visit www.medicare.gov

6/10/2010

E-Advocacy Newsletter

  • Bills By state 
  • COPD Initiatives 
  • Alphas in Action 
  • Health Care Reform 
  • Alpha-1 Association Sign-On Letters 
  • Alpha-1 Advocate Awarded 


4/09/10

Medicare Issues Intermediate Sanction Notice to  AETNA Insurance Company Medicare Health and Drug Plans

On April 5, 2010, the Centers for Medicare & Medicaid Services (CMS) issued a notice to Aetna Insurance Company of its intent to impose an intermediate sanction to ensure that Medicare beneficiaries continue to have access to prescription drugs under Medicare’s requirements.

 

The intermediate sanction, which will prevent Aetna from marketing to and enrolling new beneficiaries, will be effective April 21.  It will remain in effect until Aetna demonstrates to CMS that it has corrected its deficiencies and they are not likely to recur.  Medicare’s actions should not impact the approximately one million enrollees in the Aetna plans across the country.

 

 CMS encourages plan members who may have concerns with their Part D coverage to contact 1-800-MEDICARE (1-800-633-4227) or the state health insurance assistance program (SHIP) to help get them resolved.

 

To read the entire CMS press release, click here: http://www.cms.gov/apps/media/press_releases.asp

 

3/30/10

Health Reform Implementation Timeline

On March 23, 2010, President Obama signed comprehensive health reform, the Patient Protection and Affordable Care Act, into law. The following timeline provides implementation dates for key provisions. It reflects provisions in the new law and incorporates modifications to the law included in the Health Care and Education Reconciliation Act of 2010 passed by the House and the Senate. Click here for the timeline.


3/22/10

House of Representatives Passes Health Reform Legislation

On Sunday, March 21, 2010, the House of Representatives approved historic health care reform legislation.  The House passed both the Patient Protection and Affordable Care Act, which was passed by the Senate in December, and the Reconciliation Act of 2010, which includes changes to the Senate-passed bill.  

The health care overhaul package is a complex bill that will impact all Americans.  There are several provisions in the legislation that are of interest to the Alpha-1 community, regarding Private Insurance Market Reforms, Affordability, and General Recognition of Rare Diseases. 

This bill will:

  • Eliminate lifetime caps on benefits for all insurance plans 6 months after enactment of the bill
  • Eliminate annual caps on benefits for individual and group plans in 2014
  • Close the Medicare Part D donut hole by 2020, and provide a $250 rebate for all Medicare Part D enrollees who enter the donut hole in 2010
  • Prohibit insurers from establishing eligibility rules based on genetic information, health status, medical condition (mental or physical illness), claims experience, receipt of healthcare, medical history, evidence of insurability, disability, etc.  

 The Patient Protection and Affordable Care Act will now go to the White House for signature by the President while the Reconciliation Act of 2010 will go to the Senate for approval. 

Click here to examine the principles laid out by the Plasma Users Coalition (PUC) adopted by the Alpha-1 Association and Alpha One Foundation. The (PUC) is a group of national patient organizations that include the  Alpha-1 antitripsin, primary immunodeficiency, hemophilia, Guillain- Barré, CIDP, platelet disorders and other rare disease communities, all of which represent patients whose lives depend on plasma derived therapies. For a more in depth analysis of the bill, click here.  

3/17/10

House to Vote on Healthcare Reform This Week

The House of Representatives is preparing a final package of healthcare reform legislation for full House floor votes this week. The House Budget Committee is finalizing the package which includes the bill passed by the Senate in December and some additional House measures over the next few days. The legislation will then be sent to the House floor with final votes expected to come this weekend.

To take action click here.

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.