Shane DiGiovanna Act

Beginning not later than 1 year after the date of the enactment of this Act, the Secretary of Health and Human Services (in this section referred to as the Secretary) shall conduct a 2-year demonstration program under which items and services specified in subsection (b) furnished for the treatment of epidermolysis bullosa are required to be included as medical assistance under a State plan (or waiver of such plan) under title XIX of the Social Security Act (42 U.S.C. 1396 et seq.) for individuals described in section 1902(a)(10)(A)(i) of such Act (42 U.S.C. 1396a(a)(10)(A)(i)).

For purposes of subsection (a), the items and services specified in this subsection are over-the-counter antihistamines, acetaminophen, nonsteroidal anti-inflammatory drugs, antiseptics, zinc oxide, antibiotic ointments, and necessary wound care supplies, including wound care dressings (inclusive of primary and secondary dressings), gauze, and bandage retainers.

The Secretary shall conduct the demonstration program described in subsection (a) on a nationwide basis.

Not later than 1 year after the end of the demonstration program described in subsection (a), the Secretary shall submit to Congress a report on such program. Such report shall include the following:

(1) An evaluation of the effect of such program on expenditures for treatment of individuals with epidermolysis bullosa under the Medicaid program (taking into account any such treatment avoided due to such program).

(2) An analysis of health outcomes for such individuals compared to such outcomes before such program.

(3) Any recommendations relating to how to prevent hospitalizations relating to epidermolysis bullosa.