After several years of lobbying Congress, the ALS Association and other ALS advocates won the battle they had been fighting. The Benefits Improvement and Protection Act of 2001 was signed into law; people with ALS no longer need wait 24 months after becoming disabled to receive Medicare. Now, as soon as you begin receiving Social Security Disability payments (SSDI), you can also be covered under Medicare.

People with ALS can only benefit from this change in policy if they qualify for SSDI. Understanding the Social Security Administration's definition of disability and the criteria necessary to qualify for SSDI will help you in securing benefits.

Under Social Security, people with ALS qualify for Social Security Disability when:

• They have a diagnosis of ALS.
  
• They have worked long enough and recently enough to qualify for Social Security benefits. People who are working and paying Social Security taxes begin accruing "quarters" of coverage. A quarter is a period in which one earns $830 (2005 figures) A maximum of 4 quarters of coverage each calendar year can be accrued. The number of quarters you need will vary with age, but is never less than six.
  
• They are no longer working.
• They are citizens or lawfully present in the United States.

While the waiver of the waiting period is a positive development, Medicare is not, on its own, sufficient coverage for a person with ALS. Medicare does not cover cover custodial home care. It may, therefore, be beneficial to retain private insurance, if one has access to it, or to pay for a Medi-gap policy to supplement Medicare. Each individual's situation and coverage will differ; if you have questions about how Medicare will affect you, the following agencies can answer your questions.

• Medicare Rights Center
  (800)-333-4114
  http://www.medicarerights.org
  
  
• Center for Medicare Advocacy
  (800) 262-4414
  http://www.medicareadvocacy.org

If you do not have enough work credits to qualify for SSDI/Medicare, you may be able to qualify for SSI/Medicaid. You can find out more about these benefits by calling the Social Security Administration at (800) 772-1213 or the Access Program at (888) 700-7010.

Of course, the Chapter's Patient Services Department is also here to answer your questions at (800) 672-8857.

Medicare/Benefits Changes

Medicare Prescription Drug Benefit Beginning on January 1, 2006, all persons with ALS who are eligible for Medicare will have access to the new Medicare prescription drug benefit, regardless of how they currently receive their health coverage. The new benefit will cover both brand name and prescription drugs. As the Centers for Medicare and Medicaid Services (CMS) implements the new benefit, we are providing the following information and resources that include the latest updates about the benefit and which may help answer questions you may have.

Also included here is information about important enrollment dates for the drug benefit and Medicare prescription drug discount cards. Unlike the benefit which takes effect next year, the discount cards are currently available and those with limited incomes who enroll in a drug card before September 30, 2005 may be eligible to receive a $300 credit (see Medicare Prescription Drug Discount Cards on below).

Benefit
Enrollment: Enrollment in Medicare prescription drug plans begins November 15, 2005 and continues through May 15, 2006. Those enrolling by December 31, 2005 will receive coverage beginning on January 1, 2006. Those who do not enroll in a plan by May 15, 2006, will pay a higher premium for their coverage unless their current coverage is at least as good as the standard Medicare prescription drug coverage (your health plan will provide notice, before the enrollment period in November, as to whether the plan's drug coverage is at least as good as Medicare).

Coverage and Costs: Costs will vary depending on which plan is selected. However, most people will pay a monthly premium (about $37 in 2006) and an annual deductible (up to $250 in 2006). For drug costs between $251 and $2,250, beneficiaries pay 25% of costs, with Medicare covering 75%. Beneficiaries are responsible for paying all drug costs between $2,251 and $5,100. Following that, Medicare will pay 95% of drug costs for the remainder of the year.

In October 2005, CMS will mail the "Medicare & You 2006" handbook, which will include more detailed information about Medicare prescription drug plans, including information on coverage and which plans are available in particular areas. Additional information and assistance also will be available on the Medicare website at www.medicare.gov and the Medicare hotline, 1-800-MEDICARE. In the fall, the website will have a tool available to help people select a health plan most appropriate for them. Also in the fall, questions can be directed to local State Health Insurance Assistance Programs (SHIP), contact information for which will be available on the Medicare website and in the "Medicare & You 2006" handbook.

Rilutek
While it is not yet certain whether each health plan participating in the benefit will cover Rilutek, indications are that PALS will have access to the drug through Medicare. First, the law prohibits health plans from discriminating against beneficiaries on the basis of their medical condition. Because Rilutek is the only drug approved to treat ALS, health plans would be effectively discriminating against PALS if they deny coverage for the medication. Second, Rilutek is included in the model list of drugs that health plans can follow when deciding what drugs they will cover and include in their formularies. The drug was not included in the original model list that was proposed in 2004. However, thanks to ALSA's outreach efforts to CMS, Rilutek was added to the list, making it much more likely that the drug will be covered as part of the new drug benefit.

Additional Assistance Available
In addition to new coverage for prescription drugs, the law which created the drug benefit also provides additional assistance to those with limited financial resources. In fact, nearly eight million people automatically qualify for this assistance, including people with Medicare and Medicaid, Supplemental Security Income (SSI) and Medicare Savings Program coverage. The assistance will help beneficiaries pay the costs of their Medicare prescription drug plans when they take effect next year.

CMS and the Social Security Administration (SSA) are in the process of mailing notices to people who automatically qualify for the additional assistance. The notices, which can be viewed here, inform people about the implementation of the benefit and let them know that they will receive assistance paying for the benefit without having to apply for that assistance.

During the summer, SSA will mail a different letter to others who do not automatically qualify for additional assistance, but who may potentially be eligible for it. That mailing will include an application, which people can complete and return to learn if they are indeed eligible for this assistance. The letter can be viewed at www.ssa.gov/organizations/medicareoutreach2/. Select "Application for Help with Medicare Prescription Drug Plan Costs" towards the bottom of the page.

We strongly encourage anyone who receives this notice to complete and return the application to ensure that, if they are eligible, they will receive the assistance that is available.

Medicare Prescription Drug Discount Cards
The Medicare program's website, www.medicare.gov, includes a section on both government and private programs that offer prescription drug discounts, including Medicare-approved drug discount cards. In addition to providing general information on how the discount cards work and how to determine whether you are eligible to use the cards, the site allows you to compare the discounts offered by various drug cards for the drugs you use most frequently.

This site also includes General Information about Medicare-Approved Drug Discount Cards; A Guide to Choosing a Medicare-Approved Drug Discount Card; and steps to help you choose a discount card.

You can enroll in a Medicare approved discount card now, before the prescription drug benefit is implemented next year. In general, the cards can save you between 11% and 18% on the cost of brand name drugs and they offer additional savings on the cost of generic drugs. There are no eligibility restrictions based on income to enroll in the cards, which may have a $30.00 annual fee.

Individuals with limited income also may qualify for a $300 credit for enrolling in a Medicare drug discount card. However, you must enroll prior to September 30, 2005. Those enrolling between October 1 and December 31, 2005 receive a $150 credit.

You may be eligible for the discount card credit if:

• You have Medicare Part A and/or Part B, and
• Your annual income in 2005 is no more than $12,919 ($1,077 per month) if you are single or no more than $17,320 ($1,444 per month), including your spouse's income, if you are married.

The credit is not available if you already have prescription drug coverage from Medicaid; TRICARE for Life (military health insurance); employer or other health insurance; or the Federal Employee Health Benefits Program (FEHBP).

Other Medicare Prescription Drug Resources
CMS has a number of online resources that provide useful tips and information about the new drug benefit and can help answer questions. This information includes the following brochures:

• Introducing Medicare's New Coverage for Prescription Drugs
  
  
• The Facts About Medicare Prescription Drug Plans
  
  
• Quick Facts about Medicare's New Coverage for Prescription Drugs
  
  
• Quick Facts about Medicare's New Coverage for Prescription Drugs for people who get Supplemental Security Income benefits or help from their state Medicaid program paying their Medicare premiums
  
  
• Quick Facts about Medicare's New Coverage for Prescription Drugs for people with Medicare and Medicaid, and Medicaid now pays for their prescription drugs

The above fact sheets and other helpful publications can also be found on the CMS website.

If you have any questions about the new prescription drug benefit or would like additional information, please contact Pat Wildman at pwildman@alsa-national.org or 1-877-444-ALSA.

ALS Medicare Waiver

ALS-Related Legislation
On December 15, 2000, the United States Senate and House of Representatives voted to waive the current 24-month waiting period for Medicare coverage of people diagnosed with Lou Gehrig's disease (ALS), as part of the fiscal year 2001 spending bill (H.R. 4577) for labor, health and human services, and education. This is an historic victory for the ALS community.

The Official U.S. Government Site for People with Medicare:
www.medicare.gov

The Social Security Administration:
www.ssa.gov

Homebound Clarification

On July 26, 2002, the Centers for Medicare & Medicaid Services (CMS) issued "more flexible" guidelines for home health agencies and contractors in determining whether severely disabled Medicare beneficiaries qualify as homebound.

More information about this change in Homebound regulations

Read a press release from the U.S. Department of Health & Human Services about the Homebound clarification