I 

111TH CONGRESS 

1ST SESSION H. R. 1441 

To amend title XIX of the Social Security Act to allow States to permit 

certain Medicaid eligible individuals who have extremely high annual 

lifelong orphan drug costs to continue on Medicaid notwithstanding increased income. 

IN THE HOUSE OF REPRESENTATIVES 

MARCH 11, 2009 

Mr. MARCHANT (for himself, Mrs. EMERSON, Mr. SESSIONS, Ms. GRANGER, 

Mr. BRALEY of Iowa, and Mr. ORTIZ) introduced the following bill; which 

was referred to the Committee on Energy and Commerce 

A BILL 

To amend title XIX of the Social Security Act to allow 

States to permit certain Medicaid eligible individuals who 

have extremely high annual lifelong orphan drug costs 

to continue on Medicaid notwithstanding increased income. 

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

3 SECTION 1. SHORT TITLE. 

4 This Act may be cited as the ‘‘Ryan Dant Health 

5 Care Opportunity Act of 2009’’. 


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1 SEC. 2. STATE OPTION TO DISREGARD CERTAIN INCOME IN 

2 PROVIDING CONTINUED MEDICAID COV3 ERAGE FOR CERTAIN INDIVIDUALS WITH EX4 TREMELY HIGH PRESCRIPTION COSTS. 

5 Section 1902(e) of the Social Security Act (42 U.S.C. 

6 1396b(e)), as amended by section 203(a) of the Children’s 

7 Health Insurance Program Reauthorization Act of 2009 

8 (Public Law 111–3), is amended by adding at the end the 

9 following new paragraph: 

10 ‘‘(14)(A) At the option of the State, in the case 

11 of an individual with extremely high prescription 

12 drug costs described in subparagraph (B) who has 

13 been determined (without the application of this 

14 paragraph) to be eligible for medical assistance 

15 under this title, the State may, in redetermining the 

16 individual’s eligibility for medical assistance under 

17 this title, disregard any family income of the indi18 vidual to the extent such income is less than an 

19 amount that is specified by the State and does not 

20 exceed the amount specified in subparagraph (C), or, 

21 if greater, income equal to the cost of the orphan 

22 drugs described in subparagraph (B)(iii). 

23 ‘‘(B) An individual with extremely high pre24 scription drug costs described in this subparagraph 

25 for a 12-month period is an individual— 


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1 ‘‘(i) who is covered under health insurance 

2 or a health benefits plan that has a maximum 

3 lifetime limit of not less than $1,000,000 which 

4 includes all prescription drug coverage; 

5 ‘‘(ii) who has exhausted all available pre6 scription drug coverage under the plan as of the 

7 beginning of such period; 

8 ‘‘(iii) who incurs (or is reasonably expected 

9 to incur) on an annual basis during the period 

10 costs for orphan drugs in excess of the amount 

11 specified in subparagraph (C) for the period; 

12 and 

13 ‘‘(iv) whose annual family income (deter14 mined without regard to this paragraph) as of 

15 the beginning of the period does not exceed 75 

16 percent of the amount incurred for such drugs 

17 (as described in clause (iii)). 

18 ‘‘(C) The amount specified in this subpara19 graph for a 12-month period beginning in— 

20 ‘‘(i) 2009 or 2010, is $200,000; or 

21 ‘‘(ii) a subsequent year, is the amount 

22 specified in clause (i) (or this subparagraph) for 

23 the previous year increased by the annual rate 

24 of increase in the medical care component of 

25 the consumer price index (U.S. city average) for 


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1 the 12-month period ending in August of the 

2 previous year. 

3 Any amount computed under clause (ii) that is not 

4 a multiple of $1,000 shall be rounded to the nearest 

5 multiple of $1,000. 

6 ‘‘(D) In applying this paragraph, amounts in7 curred for prescription drugs for cosmetic purposes 

8 shall not be taken into account. 

9 ‘‘(E) With respect to an individual described in 

10 subparagraph (A), notwithstanding section 1916, the 

11 State plan— 

12 ‘‘(i) shall provide for the application of 

13 cost-sharing that is at least nominal as deter14 mined under section 1916; and 

15 ‘‘(ii) may provide, consistent with section 

16 1916A, for such additional cost-sharing as does 

17 not exceed a maximum level of cost-sharing 

18 that is specified by the Secretary and is ad19 justed by the Secretary on an annual basis. 

20 ‘‘(F) A State electing the option under this 

21 paragraph shall provide for a determination on an 

22 individual’s application for continued medical assist23 ance under this title within 30 days of the date the 

24 application if filed with the State. 

25 ‘‘(G) In this paragraph: 


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1 ‘‘(i) The term ‘orphan drugs’ means pre2 scription drugs designated under section 526 of 

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

4 U.S.C. 360bb) as a drug for a rare disease or 

5 condition. 

6 ‘‘(ii) The term ‘health benefits plan’ in7 cludes coverage under a plan offered under a 

8 State high risk pool.’’. 

Æ 


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