SECTION 1. Chapter 111 of the General Laws is hereby amended by striking out sections  6B and 6C, as appearing in the 2010 Official Edition, and inserting in place thereof the following sections:--             

Section 6B.  (a) There is hereby established a hemophilia advisory committee which shall  review administrative actions and the impact of legislation relative to the treatment and care of persons with hemophilia or other inherited bleeding and clotting disorders and to make recommendations to the commissioner of public health and the commissioner of insurance relative to the establishment of programs for public awareness, reporting and treatment of hemophilia and other inherited bleeding and clotting disorders and to make recommendations for legislation relative thereto.  The committee shall consist of 11 members.  The commissioner of public health or a designee thereof and the commissioner of insurance or a designee thereof shall serve as non-voting members and co-chairs of the committee.  The remaining members shall be appointed by the governor and include: 1 registered nurse, licensed, practicing and treating individuals with hemophilia or other inherited bleeding and clotting disorders; 1 social worker, licensed, practicing and treating individuals with hemophilia or other inherited bleeding or clotting disorders; 1 representative of a commonwealth-based, federally funded hemophilia treatment center; 1 representative of a  commercial health insurer; 1 representative of a voluntary health organization that services persons with hemophilia or other bleeding and clotting disorders; 1 person with hemophilia or a caregiver thereof; 1 person with a bleeding disorder other than hemophilia or a caregiver thereof; 1 person with a clotting disorder or a caregiver thereof; and 1 board certified physician, licensed, practicing and treating persons with hemophilia or other inherited bleeding and clotting disorders.  Members of the committee shall receive no compensation but may be reimbursed for actual expenses incurred in carrying out their official duties. A majority of members shall constitute a quorum at any meeting held by the committee. 

(b) The hemophilia advisory committee shall make recommendations to the commissioners of public health and insurance relative to:

(1)  legislative or administrative changes to policies and programs integral to the health and wellness of persons with hemophilia or other inherited bleeding and clotting disorders;

(2) coordination with state agencies and private organizations to advance the development of community-based initiatives to increase the awareness of care and treatment of persons living with hemophilia or other inherited bleeding and clotting disorders; 

(3) dissemination of information relative to initiatives of interest to persons with hemophilia or other inherited bleeding and clotting disorders;

(4)  standards of care and treatment for persons with hemophilia or other inherited bleeding and clotting disorders, taking into consideration the federal and state standards of care guidelines developed by state and national organizations including, but not limited, to the Medical and Scientific Advisory Council of the National Hemophilia Foundation;

(5)  protection and promotion of open access to any and all treatments for hemophilia and other inherited bleeding and clotting disorders consistent with the standards of care guidelines developed by state and national organizations including, but not limited to, the Medical and Scientific Advisory Council of the National Hemophilia Foundation; 

(6) assistance to persons living with hemophilia or other inherited bleeding and clotting disorders to access appropriate health insurance coverage through private or state-sponsored health insurance providers; and

(7)   development of, and participation in, care and treatment programs for persons with hemophilia or other inherited bleeding and clotting disorders, including self-administration, home care, medical and dental procedures and techniques designed to provide maximum control over bleeding episodes.

(c) The department of public health may coordinate with other state agencies and private organizations, through cooperative agreements with hemophilia treatment centers, medical facilities, schools and nonprofit organizations that serve persons living with hemophilia or other inherited bleeding and clotting disorders, in order to advance the development of community –based initiatives to increase the awareness of care and treatment for persons living with  hemophilia or other inherited bleeding and clotting disorders. The department of public health may also extend assistance to such agencies and organizations to facilitate connecting persons with hemophilia or other bleeding and clotting disorders with such agencies and programs.

Section 6C. The commissioner of public health, in consultation with the commissioner of insurance, shall annually submit a report to the joint committee on health care financing and the joint committee on public health on the status of care and treatment of persons with hemophilia or other inherited bleeding and clotting disorders.  The report shall include information relative to the method and manner by which the commonwealth has protected the health and wellness of persons with hemophilia or other inherited bleeding and clotting disorders.  A copy of said report shall also be submitted to the secretary of the executive health and human services and the director of the MassHealth program.

SECTION 2.  The department of public health shall adopt such rules and regulations as necessary to effectuate the purposes of section 1 of this act.

SECTION 3.  The initial report to be filed pursuant to section 1 shall be filed not later than May 30, 2013.