Page:United States Statutes at Large Volume 119.djvu/2578

 119 STAT. 2560

Surveys.

Public information.

VerDate 14-DEC-2004

07:21 Oct 30, 2006

PUBLIC LAW 109–129—DEC. 20, 2005

patient involved are being met, including with respect to the following: ‘‘(i) Periodically providing to the patient (or an individual acting on behalf of the patient) information regarding bone marrow donors or cord blood units that are suitably matched to the patient, and other information regarding the progress being made in the search. ‘‘(ii) Informing the patient (or such other individual) if the search has been interrupted or discontinued. ‘‘(iii) Identifying and resolving problems in the search, to the extent practicable. ‘‘(F) The Office shall ensure that the following data are made available to patients: ‘‘(i) The resources available through the Program. ‘‘(ii) A comparison of transplant centers regarding search and other costs that prior to transplantation are charged to patients by transplant centers. ‘‘(iii) The post-transplant outcomes for individual transplant centers. ‘‘(iv) Information concerning issues that patients may face after a transplant. ‘‘(v) Such other information as the Program determines to be appropriate. ‘‘(G) The Office shall conduct surveys of patients (or family members, physicians, or other individuals acting on behalf of patients) to determine the extent of satisfaction with the system for patient advocacy under this subsection, and to identify ways in which the system can be improved to best meet the needs of patients. ‘‘(3) CASE MANAGEMENT.— ‘‘(A) IN GENERAL.—In serving as an advocate for a patient under paragraph (2), the Office shall provide individualized case management services directly to the patient (or family members, physicians, or other individuals acting on behalf of the patient), including— ‘‘(i) individualized case assessment; and ‘‘(ii) the functions described in paragraph (2)(D) (relating to progress in the search process). ‘‘(B) POSTSEARCH FUNCTIONS.—In addition to the case management services described in paragraph (1) for patients, the Office shall, on behalf of patients who have completed the search for a bone marrow donor or cord blood unit, provide information and education on the process of receiving a transplant, including the post-transplant process. ‘‘(i) COMMENT PROCEDURES.—The Secretary shall establish and provide information to the public on procedures under which the Secretary shall receive and consider comments from interested persons relating to the manner in which the Program is carrying out the duties of the Program. The Secretary may promulgate regulations under this section. ‘‘(j) CONSULTATION.—In developing policies affecting the Program, the Secretary shall consult with the Advisory Council, the Department of Defense Marrow Donor Recruitment and Research Program operated by the Department of the Navy, and the board of directors of each entity awarded a contract under this section.

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