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NEWS FROM ALSA–Advocacy Update #2
Implementation of Medicare Waiver: 
24-month waiting period waived for people diagnosed with Lou Gehrig's disease

March 28, 2001

The Health Care Financing Administration (HCFA) has confirmed that as of July 1, 2001, ALS patients will no longer have to wait 24-months for Medicare benefits. As you know, this is due to the historic legislation that was passed by the 106th Congress and signed into law by President Clinton.

HCFA notified The ALS Association (ALSA) that due to the straightforwardness of the bill and a prior precedent, no comment period would be necessary.

HCFA is currently notifying each Social Security Administration Office of this new law. HCFA has also identified 1,360 persons with ALS that on July 1, 2001 will be entitled to Medicare benefits. A letter in mid-June will notify these individuals that they will be eligible July 1. This letter will serve as the patient’s official verification to their provider until their Medicare Card is received in mid-August.

Because of computerized processing, 260 of the 1,360 people with ALS eligible on July 1 will receive notice this spring of an effective Medicare date. Please be aware that this information is now superceded by the ALS Medicare Waiver. It is not possible to halt the HCFA package mailing to these 260 people. However these 260 individuals will receive a second letter notifying them to disregard this package and follow the instructions of their June letter.

While there has been interest in an earlier start date for this new law, HCFA is bound by the statuary language that Congress passed which states July 1, 2001 as the start date.

In the future, when a person with ALS is approved for Social Security benefits (which still takes 5 months after meeting the criteria for disability), it will also include Medicare benefits.

As the implementation date draws closer, The ALS Association will provide you with more specific dates and talking points.

We have all worked hard for more than three years to achieve this goal. It is now vitally important that we get the word out.

As always if there are any questions, please call ALSA’s Office for Government Relations and Public Affairs, toll-free at 1-877-444-ALSA.

Thank you for your continued assistance and patience with this matter.

ALS-Specific Legislation Approved By Both Houses of Congress
24-month waiting period waived for people diagnosed with Lou Gehrig's  disease

From : Mike Havlicek, President, The ALS Association
To : The ALS Community
Re : Breaking News about ALS-Specific Legislation
Date : December 15, 2000

I can't adequately express my joy for the success achieved today by the entire ALS community. Nor can I sufficiently express my gratitude for all of you who contributed so importantly to that success. Our collective success belongs to everyone of you who told your story, wrote or called  your Congressperson and Senator and attended National ALS Advocacy Day. The success belongs as well to those compassionate Senators and House Members who listened to and heard your stories, who really practiced bi-partisanship and who acted in the best interest of people in need.

A wrong has been made right. Let's all take pleasure in it and be inspired by what we can accomplish together!

I would like to share with you ALSA's official announcement....

Breaking News - From ALSA's National Office

ALS-Specific Legislation Approved By Both Houses of Congress
24-month waiting period waived for people diagnosed with Lou Gehrig's  disease

Today, 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.

This legislation, authored by Senator Robert Torricelli (D-NJ) and Congresswoman Lois Capps (D-CA), garnered bi-partisan support from 282 co-sponsors in the House and 28 in the Senate. As the 106th Congress drew to a close, both authors rallied their constituents to attach this waiver to the Medicare give-back.

"The ALS Association is extremely grateful to bill authors Senator Robert Torricelli (D-NJ) and Congresswoman Lois Capps (D-CA) for their determined efforts on behalf of the ALS community," stated Mike Havlicek, president of The ALS Association. "Their stewardship of this bill, along with the bi-partisan support of their colleagues, helped ratify this first-ever  ALS-specific legislation to help those affected by the disease."

A common problem for individuals stricken with ALS is that, due to the progressive nature of the disease, and the lack of diagnostic tests, a final diagnosis is often made only after a year or more of symptoms and searching for answers. Once a diagnosis is finally made, the tragedy is needlessly worsened by having to wait 24 months for coverage of the care they so desperately need. Elimination of this waiting period will  positively affect the lives of people with ALS, and provide them access to care they may not otherwise have been able to receive under the
current law.

"Because of the hard work and perseverance of ALS patients, their families, and The ALS Association, Medicare will now cover ALS patients when they become ill," said Congresswoman Lois Capps. "I have been inspired by their stories and feel honored to have introduced this legislation on their behalf. Much more remains to be done, but today Congress has helped thousands of patients and families struggling with this devastating disease."

"It has been almost three years since I began this fight on behalf of ALS patients," said Senator Robert Torricelli. "I am extremely proud that the day has finally come to eliminate this arbitrary and cruel restriction. This tremendous victory is long overdue and will literally improve the lives of thousands of people struggling to cope with the horrors of ALS. It will mean that no ALS patient will ever again be faced with the indignity of going bankrupt while waiting for Medicare assistance."

No specific timetable has been announced for this waiver to go into  effect. Further information about the implementation of this law will be announced in the near future.

The ALS Association is the only national not-for-profit voluntary health organization dedicated solely to the fight against ALS through research, patient support, information dissemination and public awareness.

For more information about ALS, please visit www.alsa.org

For questions regarding the bill, contact Steve Gibson, ALSA's Vice President, Government Relations and Public Affairs at 202-638-6997.

Contact: Carol Levey
(818) 880-9007 x220
mediarelations@alsa-national.org

A Crucial Election for Medical Research
By MICHAEL J. FOX

 [This editorial appeared in the New York Times on November 1, 2000].

As a Parkinson's disease patient and a new American citizen, I look  forward to Election Day as something momentous: It's not just the first presidential race in which I can vote (I was born in Canada).

The outcome is likely to have a dramatic bearing on my prognosis - and that of millions of Americans whose lives have been touched by Parkinson's, amyotrophic lateral sclerosis, spinal cord injury, Huntington's disease, Alzheimer's disease and other devastating illnesses. That's because one question that may be decided on Tuesday is whether stem cell research - which holds the best hope of a cure for such diseases - will be permitted to go forward.

Campaign aides to George W. Bush, who has not publicly addressed the  issue, stated on several occasions that a Bush administration would overturn current National Institutes of Health guidelines and ban federal funding for stem cell research. Why? Because the research, which uses human embryos discarded from fertility clinics, has become enmeshed in the politics of abortion.

Mr. Bush favors a ban on stem cell research, one aide said, "because of  his pro-life views."

Yet stem cell research has nothing to do with abortion. It is not the same as fetal tissue research, the federal funding of which was banned  by Presidents Reagan and Bush (but has since been authorized by Congress). Stem cell work uses undifferentiated cells extracted from embryos just a few days old - embryos produced during in vitro fertilization, a process that creates many more fertilized eggs than are implanted in the wombs of women trying to become pregnant. Currently, more than 100,000 embryos are frozen in storage. Most of these microscopic clumps of cells are  destined to be destroyed - ending any potential for life.

Their potential for saving lives, however, may be unlimited. Given the proper signal or environment, stem cells, transplanted into human tissue, can be induced to develop into brain, heart, skin, bone marrow cells - indeed, any specialized cells. The scientific research community believes that the transplanted stem cells may be able to regenerate dead or dying human tissue, reversing the progress of disease.

According to Cure, a coalition of 28 groups representing patients with cancer, Parkinson's, paralysis and other maladies, "no research in recent history has offered as much hope" for cures.

Support for stem-cell research comes not just from pro-choice Democrats like Al Gore but also from Republicans who have concluded, in the words  of former Senator Bob Dole, that supporting such research is "the pro-life position to take."

The list includes Republican senators like Strom Thurmond of South  Carolina, John McCain of Arizona, Connie Mack of Florida and Pete Domenici of New Mexico. Even Senator Gordon Smith of Oregon, who the  National Right to Life Committee says voted "the right way" on abortion every time last year, supports the research. His family has experience  with the ravages of Parkinson's disease, and he has concluded, "Part of my pro-life ethic is to make life better for the living."

This is the real compassionate conservatism. One hopes that between now and next Tuesday, Mr. Bush will explain to those of us with debilitating diseases - indeed, to all of us - why it is more pro-life to throw away stem cells than to put them to work saving lives.

-Michael J. Fox, the actor, is active in organizations working to combat Parkinson's disease.

Status of ALS-Related Legislation in Congress


Date : October 10, 2000
From: Steve Gibson, Vice President
Government Relations and Public Affairs

RE : LEGISLATIVE ALERT UPDATE -Advocacy Update #10

As you know, the U. S. House Commerce Committee passed part of H.R. 353, the Amyotrophic Lateral Sclerosis Treatment Act. The part of this legislation that was passed eliminates the 24-month waiting period for Medicare, which prevents ALS patients from receiving the immediate care they desperately need. That provision was attached to the Balanced Budget Act Refinement (BBR) Package for Medicare providers -H.R. 5291. Unfortunately, the version of the bill reported out of the House Ways and Means Health Subcommittee did not. It is our hope that the final package, now being negotiated out between the Committees, will include the waiver.

Please urge your member of Congress to sign the letter to Speaker Hastert requesting his support to include a critical provision in the Medicare "giveback" legislation that waives Medicare's 24-month waiting period for ALS patients.

If you don't know their direct office phone number, please use the Capitol Switchboard at (202) 225-3121 or find your Representative online via http://legislators.com 

To sign the letter, please have your Member of Congress' staff call the Congressional Staff who are coordinating this effort immediately. If your Member is a Republican, please have them call Lisa Boeppel at Congresswoman Morella's Office at (202) 225-5341. If your member of Congress is a Democrat, please have them call Randolph Harrison at Congresswoman Capps' Office at (202) 225-3601. The deadline to sign this letter is by close of business on Wednesday, October 11th (TOMORROW).

We need as many of our 281 co-sponsors as possible to sign on to this important letter!

Here are some brief talking points:

1) As you know, ALS is a fatal neurological disorder. Its progression results in total paralysis, leaving patients without the ability to move, speak, swallow or breathe and therefore totally dependent on caregivers for all aspects of life. Without a cure or any effective treatment, the life expectancy of an ALS patient is only 3-5 years.

2) A common problem for individuals stricken with ALS is that, due to the progressive nature of the disease and the lack of diagnostic tests, a final diagnosis is often made after a year or more of symptoms and searching for answers. This delay results in a loss of valuable time that could have been spent in starting treatment early. Once a diagnosis is finally made, the tragedy is needlessly worsened by Medicare's 24-month waiting period which forces ALS patients to wait until the final months of their illness to receive care.

3) Eliminating this unfair restriction for ALS patients enjoys strong bipartisan support in the Senate and the House. In fact the House version of this bill has the support of 281 co-sponsors and has just passed the House Commerce Committee. Including this legislation in a BBA Refinement Package will represent a first real step toward improving the quality of life for Americans stricken with ALS.

Please tell as many friends, co-workers and family members to call immediately. There are very few days left of this session in Congress. If this bill does not get attached to this legislation, it will "die" at the end of the session and we will have to start all over again next session in January 2001.

When a Member of Congress has agreed to assist in signing the letter or if their staff has questions, please e-mail me at steve@alsa-national.org or fax back this form to me at (202) 638-6316 with the following information:

- Member's Name
- Person you spoke with at their office
- Response (Check all that apply)
* Will co-sponsor bill
* Will assist in signing the letter
* Uncertain/undecided
* Will not assist in signing the letter
- Your name
- Your phone number

For More Information About ALS:


ALS-Specific Legislation Co-sponsor Tally Reaches 200 in House!

House Resolution 353 and Senate Bill 1074
The Amyotrophic Lateral Sclerosis Assistance and Treatment Act 

Copyright © 1999 by Michael Zaslow's ZazAngels. All rights reserved.
01/04/06 05:15:04 PM