I 111th CONGRESS 1st Session H. R. 1441 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.

Short title

This Act may be cited as the Ryan Dant Health Care Opportunity Act of 2009.

2.

State option to disregard certain income in providing continued Medicaid coverage for certain individuals with extremely high prescription costs

Section 1902(e) of the Social Security Act (42 U.S.C. 1396b(e)), as amended by section 203(a) of the Children’s Health Insurance Program Reauthorization Act of 2009 (Public Law 111–3), is amended by adding at the end the following new paragraph: (14)(A)At the option of the State, in the case of an individual with extremely high prescription drug costs described in subparagraph (B) who has been determined (without the application of this paragraph) to be eligible for medical assistance under this title, the State may, in redetermining the individual’s eligibility for medical assistance under this title, disregard any family income of the individual to the extent such income is less than an amount that is specified by the State and does not exceed the amount specified in subparagraph (C), or, if greater, income equal to the cost of the orphan drugs described in subparagraph (B)(iii). (B)An individual with extremely high prescription drug costs described in this subparagraph for a 12-month period is an individual— (i)who is covered under health insurance or a health benefits plan that has a maximum lifetime limit of not less than $1,000,000 which includes all prescription drug coverage; (ii)who has exhausted all available prescription drug coverage under the plan as of the beginning of such period; (iii)who incurs (or is reasonably expected to incur) on an annual basis during the period costs for orphan drugs in excess of the amount specified in subparagraph (C) for the period; and (iv)whose annual family income (determined without regard to this paragraph) as of the beginning of the period does not exceed 75 percent of the amount incurred for such drugs (as described in clause (iii)). (C)The amount specified in this subparagraph for a 12-month period beginning in— (i)2009 or 2010, is $200,000; or (ii)a subsequent year, is the amount specified in clause (i) (or this subparagraph) for the previous year increased by the annual rate of increase in the medical care component of the consumer price index (U.S. city average) for the 12-month period ending in August of the previous year. Any amount computed under clause (ii) that is not a multiple of $1,000 shall be rounded to the nearest multiple of $1,000.(D)In applying this paragraph, amounts incurred for prescription drugs for cosmetic purposes shall not be taken into account. (E)With respect to an individual described in subparagraph (A), notwithstanding section 1916, the State plan— (i)shall provide for the application of cost-sharing that is at least nominal as determined under section 1916; and (ii)may provide, consistent with section 1916A, for such additional cost-sharing as does not exceed a maximum level of cost-sharing that is specified by the Secretary and is adjusted by the Secretary on an annual basis. (F)A State electing the option under this paragraph shall provide for a determination on an individual’s application for continued medical assistance under this title within 30 days of the date the application if filed with the State. (G)In this paragraph: (i)The term orphan drugs means prescription drugs designated under section 526 of the Federal Food, Drug, and Cosmetic Act (21 U.S.C. 360bb) as a drug for a rare disease or condition. (ii)The term health benefits plan includes coverage under a plan offered under a State high risk pool. .