SPONSOR:

Sen. Poore

DELAWARE STATE SENATE

152nd GENERAL ASSEMBLY

SENATE AMENDMENT NO. 1

TO

SENATE BILL NO. 55

AMEND Senate Bill No. 55, on line 20, by deleting “shall be established within the Department of Health and Social Services” and substituting in lieu thereof the following:

shall be established within the Office of the Lt. Governor ”.

FURTHER AMEND Senate Bill No. 55 on line 46 by deleting the number “ 11 ” and substituting in lieu thereof

14 ”.

FURTHER AMEND Senate Bill No. 55 on line 57 by deleting “ from a hospital in Delaware ” and substituting in

lieu thereof the following:

from an acute care hospital in Delaware ”.

FURTHER AMEND Senate Bill No. 55 by deleting Lines 59 to 60, by inserting in lieu thereof the following, and by renumbering the succeeding paragraphs accordingly:

(9) A Delaware resident who either has a rare disease or has experience caring for a person with a rare disease.

(10)  A second Delaware resident who either has a rare disease or has experience caring for a person with a rare disease.

     (11) One administrator, or their designee, from a biopharma manufacturer, appointed by the Governor.

(12) One licensed genetic counselor, appointed by the Governor.

FURTHER AMEND Senate Bill No. 55, by adding the following after line 79:

(g) The University of Delaware Institute for Public Administration shall staff the Council.  An annual line item allocation of funding must be provided to the Council to support the operational services carried out by the University of Delaware.

SYNOPSIS

This amendment makes the following changes to Senate Bill No. 55:

1) It establishes the Rare Disease Advisory Council within the Office of the Lt. Governor instead of the

Department of Health and Social Services.

2) It amends the provision about the hospital administrator appointee to the Council by requiring that the

appointee be from an acute care hospital in Delaware.

3) It increases the size of the Council from 11 members to 14 members, by adding the following: a) a second Delaware resident, who either has a rare disease or has experience caring for a person with a rare disease, b) an administrator from a biopharma manufacturer, and c) a licensed genetic counselor.

4) It establishes that staffing support for the Council will be provided by the University of Delaware Institute for Public Administration.

Author: Senator Poore