II

106TH CONGRESS

1ST SESSION S. 1074

To amend the Social Security Act to waive the 24-month waiting period

for medicare coverage of individuals disabled 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.

IN THE SENATE OF THE UNITED STATES

MAY 19, 1999

Mr. TORRICELLI (for himself, Mr. WELLSTONE, and Mr. SARBANES) introduced the following bill; which was read twice and referred to the Committee on Finance

A BILL

To amend the Social Security Act to waive the 24-month

waiting period for medicare coverage of individuals disabled 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.

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled,
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•S 1074 IS

1 SECTION 1. SHORT TITLE; FINDINGS; PURPOSES.

2 (a) SHORT TITLE.—This Act may be cited as the

3 ‘‘Amyotrophic Lateral Sclerosis (ALS) Treatment and As4 sistance Act of 1999’’.

5 (b) FINDINGS.—Congress finds the following:

6 (1) Amyotrophic Lateral Sclerosis (ALS), com7 monly known as Lou Gehrig’s Disease, is a progres8 sive neuromuscular disease characterized by a degen9 eration of the nerve cells of the brain and spinal

10 cord leading to the wasting of muscles, paralysis,

11 and eventual death.

12 (2) Approximately 30,000 individuals in the

13 United States are afflicted with ALS at any time,

14 with approximately 5,000 new cases appearing each

15 year.

16 (3) ALS usually strikes individuals who are 50

17 years of age or older.

18 (4) The life expectancy of an individual with

19 ALS is 3 to 5 years from the time of diagnosis.

20 (5) There is no known cure or cause for ALS.

21 (6) Aggressive treatment of the symptoms of

22 ALS can extend the lives of those with the disease.

23 Recent advances in ALS research have produced

24 promising leads, many related to shared disease

25 processes that appear to operate in many

26 neurodegenerative diseases.
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•S 1074 IS

1 (c) PURPOSES.—It is the purposes of this Act—

2 (1) to assist individuals suffering from ALS by

3 waiving the 24-month waiting period for medicare

4 eligibility on the basis of disability for ALS patients;

5 and

6 (2) to provide medicare coverage of drugs and

7 biologicals used for the treatment of ALS or for the

8 alleviation of symptoms relating to ALS.

9 SEC. 2. WAIVER OF 24-MONTH WAITING PERIOD FOR MEDI10 CARE COVERAGE OF INDIVIDUALS DISABLED

11 WITH AMYOTROPHIC LATERAL SCLEROSIS

12 (ALS).

13 (a) IN GENERAL.—Section 226 of the Social Security

14 Act (42 U.S.C. 426) is amended—

15 (1) by redesignating subsection (h) as sub16 section (j) and by moving such subsection to the end

17 of the section; and

18 (2) by inserting after subsection (g) the fol19 lowing:

20 ‘‘(h) For purposes of applying this section in the case

21 of an individual medically determined to have amyotrophic

22 lateral sclerosis (ALS), the following special rules apply:

23 ‘‘(1) Subsection (b) shall be applied as if there

24 were no requirement for any entitlement to benefits,

25 or status, for a period longer than 1 month.
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1 ‘‘(2) The entitlement under such subsection

2 shall begin with the first month (rather than twenty3 fifth month) of entitlement or status.

4 ‘‘(3) Subsection (f) shall not be applied.’’.

5 (b) CONFORMING AMENDMENT.—Section 1837 of

6 such Act (42 U.S.C. 1395p) is amended by adding at the

7 end the following:

8 ‘‘(j) In applying this section in the case of an indi9 vidual who is entitled to benefits under part A pursuant

10 to the operation of section 226(h), the following special

11 rules apply:

12 ‘‘(1) The initial enrollment period under sub13 section (d) shall begin on the first day of the first

14 month in which the individual satisfies the require15 ment of section 1836(1).

16 ‘‘(2) In applying subsection (g)(1), the initial

17 enrollment period shall begin on the first day of the

18 first month of entitlement to disability insurance

19 benefits referred to in such subsection.’’.

20 (c) EFFECTIVE DATE.—The amendments made by

21 this section shall apply to benefits for months beginning

22 after the date of the enactment of this Act.
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•S 1074 IS

1 SEC. 3. MEDICARE COVERAGE OF DRUGS TO TREAT

2 AMYOTROPHIC LATERAL SCLEROSIS (ALS).

3 (a) IN GENERAL.—Section 1861(s)(2) of the Social

4 Security Act (42 U.S.C. 1395x(s)(2)) is amended—

5 (1) by striking ‘‘and’’ at the end of subpara6 graph (S);

7 (2) by striking the period at the end of sub8 paragraph (T) and inserting ‘‘; and’’; and

9 (3) by adding at the end the following:

10 ‘‘(U) any drug (which is approved by the Com11 missioner of Food and Drugs under section 505 of

12 the Federal Food, Drug, and Cosmetic Act (21

13 U.S.C. 355)) or biological (which is licensed by the

14 Secretary of Health and Human Services under sec15 tion 351 of the Public Health Service Act (42

16 U.S.C. 262)) prescribed for use in the treatment of

17 amyotrophic lateral sclerosis (ALS) or the alleviation

18 of symptoms relating to ALS.’’.

19 (b) EFFECTIVE DATE.—The amendments made by

20 subsection (a) shall apply to drugs furnished on or after

21 the first day of the first month beginning after the date

22 of enactment of this Act.

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