[Congressional Record Volume 145, Number 73 (Wednesday, May 19, 1999)]
[Senate]
[Page S5587]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. TORRICELLI (for himself and Mr. Wellstone):
  S. 1074. A bill to amend the Social Security Act to waive the 24-
month waiting period for medicare coverage of individuals with 
amyotrophic lateral sclerosis (ALS), and to provide medicare coverage 
of drugs and biologicals used for the treatment of ALS or for the 
alleviation of symptoms relating to ALS; to the Committee on Finance.


  AMYOTROPHIC LATERAL SCLEROSIS (ALS) TREATMENT AND ASSISTANCE ACT OF 
                                  1999

  Mr. TORRICELLI. Mr. President, I rise today to introduce legislation 
that will improve the lives of 30,000 Americans, 850 of whom live in my 
State of New Jersey, who are stricken with Amyotrophic Lateral 
Sclerosis (ALS).
  Many of us know Amyotrophic Lateral Sclerosis (ALS) as the disease 
that struck down the famed Yankees 1st baseman, Lou Gehrig, yet, few of 
us are aware of the tragic effects ALS has on its victims. Fewer still 
are aware of the inherent flaws in the Medicare program which further 
compound the suffering of those with ALS.
  Despite the short life expectancy of three to five years, ALS patents 
must endure a two year waiting period in order to receive Medicare 
services. Forcing ALS patients to wait until the final months of their 
illness defies common sense and human decency. In fact, as a result of 
the Medicare waiting period, approximately 17,000 ALS patients remain 
ineligible for Medicare services right now, regardless of the severity 
of their condition.
  My bill, the ALS Treatment, and Assistance Act waives the 24-month 
Medicare waiting period for ALS patients. A similar waiver is granted 
for victims of end-stage renal disease due to the rapid onset of 
symptoms. The immediacy of symptoms in ALS patients and extremely short 
life expectancy illustrate the need to extend the waiver for ALS. In 
addition, many ALS victims have had productive lives and will have paid 
into the Social Security system well before the onset of ALS.
  The legislation also requires Medicare to provide coverage for all 
FDA-approved drugs that treat ALS. While Medicare typically does not 
provide coverage for prescription drug therapies, over the past few 
years, exceptions have been granted to provide drug coverage to treat 
osteoporosis and certain types of cancer. Due to the rapid onset of 
symptoms and the short life expectancy of ALS patients, the need for 
another exception is clear. In addition, expanding Medicare coverage 
for ALS therapies will stimulate further research.
  ALS is a disease that strikes at every community, with the potential 
for striking every American. No one is immune, and everyone is 
vulnerable. I am pleased to be joined by my colleague Senator Wellstone 
in introducing legislation that represents a first real step toward 
improving the quality of life for people with ALS while bringing us 
much closer to finding a cause and a cure.
  Mr. President, I ask at this time that the text of the bill be 
printed in the Record.
  There being no objection, the bill was ordered to be printed in the 
Record, as follows:

                                S. 1074

       Be it enacted by the Senate and House of Representatives of 
     the United States of America in Congress assembled,

     SECTION 1. SHORT TITLE; FINDINGS; PURPOSES.

       (a) Short Title.--This Act may be cited as the 
     ``Amyotrophic Lateral Sclerosis (ALS) Treatment and 
     Assistance Act of 1999''.
       (b) Findings.--Congress finds the following:
       (1) Amyotrophic Lateral Sclerosis (ALS), commonly known as 
     Lou Gehrig's Disease, is a progressive neuromuscular disease 
     characterized by a degeneration of the nerve cells of the 
     brain and spinal cord leading to the wasting of muscles, 
     paralysis, and eventual death.
       (2) Approximately 30,000 individuals in the United States 
     are afflicted with ALS at any time, with approximately 5,000 
     new cases appearing each year.
       (3) ALS usually strikes individuals who are 50 years of age 
     or older.
       (4) The life expectancy of an individual with ALS is 3 to 5 
     years from the time of diagnosis.
       (5) There is no known cure or cause for ALS.
       (6) Aggressive treatment of the symptoms of ALS can extend 
     the lives of those with the disease. Recent advances in ALS 
     research have produced promising leads, many related to 
     shared disease processes that appear to operate in many 
     neurodegenerative diseases.
       (c) Purposes.--It is the purposes of this Act--
       (1) to assist individuals suffering from ALS by waiving the 
     24-month waiting period for medicare eligibility on the basis 
     of disability for ALS patients; and
       (2) to provide medicare coverage of drugs and biologicals 
     used for the treatment of ALS or for the alleviation of 
     symptoms relating to ALS.

     SEC. 2. WAIVER OF 24-MONTH WAITING PERIOD FOR MEDICARE 
                   COVERAGE OF INDIVIDUALS DISABLED WITH 
                   AMYOTROPHIC LATERAL SCLEROSIS (ALS).

       (a) In General.--Section 226 of the Social Security Act (42 
     U.S.C. 426) is amended--
       (1) by redesignating subsection (h) as subsection (j) and 
     by moving such subsection to the end of the section; and
       (2) by inserting after subsection (g) the following:
       ``(h) For purposes of applying this section in the case of 
     an individual medically determined to have amyotrophic 
     lateral sclerosis (ALS), the following special rules apply:
       ``(1) Subsection (b) shall be applied as if there were no 
     requirement for any entitlement to benefits, or status, for a 
     period longer than 1 month.
       ``(2) The entitlement under such subsection shall begin 
     with the first month (rather than twenty-fifth month) of 
     entitlement or status.
       ``(3) Subsection (f) shall not be applied.''.
       (b) Conforming Amendment.--Section 1837 of such Act (42 
     U.S.C. 1395p) is amended by adding at the end the following:
       ``(j) In applying this section in the case of an individual 
     who is entitled to benefits under part A pursuant to the 
     operation of section 226(h), the following special rules 
     apply:
       ``(1) The initial enrollment period under subsection (d) 
     shall begin on the first day of the first month in which the 
     individual satisfies the requirement of section 1836(1).
       ``(2) In applying subsection (g)(1), the initial enrollment 
     period shall begin on the first day of the first month of 
     entitlement to disability insurance benefits referred to in 
     such subsection.''.
       (c) Effective Date.--The amendments made by this section 
     shall apply to benefits for months beginning after the date 
     of the enactment of this Act.

     SEC. 3. MEDICARE COVERAGE OF DRUGS TO TREAT AMYOTROPHIC 
                   LATERAL SCLEROSIS (ALS).

       (a) In General.--Section 1861(s)(2) of the Social Security 
     Act (42 U.S.C. 1395x(s)(2)) is amended--
       (1) by striking ``and'' at the end of subparagraph (S);
       (2) by striking the period at the end of subparagraph (T) 
     and inserting ``; and''; and
       (3) by adding at the end the following:
       ``(U) any drug (which is approved by the Commissioner of 
     Food and Drugs under section 505 of the Federal Food, Drug, 
     and Cosmetic Act (21 U.S.C. 355)) or biological (which is 
     licensed by the Secretary of Health and Human Services under 
     section 351 of the Public Health Service Act (42 U.S.C. 262)) 
     prescribed for use in the treatment of amyotrophic lateral 
     sclerosis (ALS) or the alleviation of symptoms relating to 
     ALS.''.
       (b) Effective Date.--The amendments made by subsection (a) 
     shall apply to drugs furnished on or after the first day of 
     the first month beginning after the date of enactment of this 
     Act.
                                 ______