PETITION OF:

SECTION 1. Chapter 111 of the general laws is hereby amended by striking sections 6, 6A, and 6B and inserting in place thereof the following:

Section 6A. Hemophilia Advisory Committee Act

The general court finds that hemophilia and related bleeding disorders are devastating health conditions that afflict many citizens of the commonwealth. The general court also finds hemophilia is an inherited bleeding disorder, predominantly affecting males. Hemophilia and other bleeding disorders exist when it is hard for a person to stop bleeding. Although a predominately hereditary disease, hemophilia and other related bleeding disorders also affect people with no family history. Up to one third of all new cases have no previous family history of the disease. In these cases, the disease developed after a new or spontaneous gene mutation.

People living with hemophilia and other related bleeding disorders require attentive compliance and adherence to scheduled regimens. The appropriate care and treatment of hemophilia and other related bleeding disorders is a necessity for daily life of any person afflicted with these diseases. Cost of care and treatment for these rare genetic disorders necessitates both private and state sponsored or licensed health insurance coverage.

It is the opinion of the general court that hemophilia and related bleeding disorders can cause serious financial, social and emotional hardships for patients and their families of such a major consequences that it is essential for the State to develop and implement policies, plans and programs to guarantee continued quality of life for these patients.

It is the intent of the general court through implementation of this act to reorganize the hemophilia advisory committee to provide expert advice on the patient impact of health and insurance polices that impact individuals impacted by hemophilia and other related bleeding disorders.

This act may be cited as the hemophilia advisory committee act.

Section 6B. Hemophilia Advisory Committee

The commissioner in coordination with the commissioner of insurance shall appoint a hemophilia advisory committee to review the impact of legislation and administrative actions in preserving the treatment and care of hemophilia and related bleeding and establish programs for public awareness, reporting and treatment of hemophilia and other related bleeding disorders.

(1) The hemophilia advisory committee shall:

A) Advise the Departments on the impact of proposed legislation and administrative changes to policies and programs that are integral to the health and wellness of individuals with hemophilia and other related bleeding disorders.

B) Assist in the development and institute a statewide awareness initiative among health care professionals, teachers, school administrators, public health departments, and families including the dissemination of information and the conducting of educational programs to assist in the appropriate assistance, care and treatment of hemophilia and other related bleeding disorders.

C) Extend assistance to the programs listed in (B) in order to facilitate linkages for persons with hemophilia or other related bleeding disorders.

D) Identify standards of care and treatment for persons living with hemophilia and other related bleeding disorders to protect open access to any and all treatments for hemophilia and related bleeding disorders.

E) Assist in protecting the rights of people living with hemophilia and related bleeding disorders to appropriate health insurance coverage, be it under a private or state sponsored health insurance provider.

F) Develop or participate in the development of care and treatment programs for such persons, including self-administration, home care and medical and dental procedures and techniques designed to provide maximum control over bleeding episodes typical in such persons.

2) The commissioner may provide community based awareness programs on hemophilia and other related bleeding disorders to elevate awareness of care and treatment of persons living with hemophilia and other related bleeding disorders. The commissioner may provide such services through cooperative agreements with medical facilities or other appropriate means.

3) The commissioner in conjunction with the commissioner of insurance shall present a report to the governor and the leadership of the general court on or before December 1, 2007 and annually thereafter on the status of care and treatment for persons living with hemophilia and other related bleeding disorders. Said report shall include how the state assisted in protecting the rights of people living with hemophilia and related bleeding disorders by protecting open access to any and all treatments and obtaining appropriate health insurance coverage, be it private, state sponsored or licensed health insurance coverage

4) The hemophilia advisory committee shall consist of the commissioner of public health and the commissioner of insurance and/or their designees, who shall serve as non-voting members and shall be co-chairs of the committee, and seven voting members appointed by the governor. The voting members shall include persons who are experienced in the delivery of diagnosis, treatment, care and support services to individuals with hemophilia or related bleeding disorders. The voting members shall include:

a) one board-certified physician who is licensed, practicing and currently treating individuals with hemophilia or other related bleeding disorders,

b) one registered nurse who is licensed, practicing and currently treating individuals with hemophilia or other related bleeding disorders,

c) one social worker who is licensed, practicing and currently treating individuals with hemophilia or other related bleeding disorders,

d) one representative of a state based hemophilia treatment center,

e) one representative of an organization established under state law for the purpose of providing health insurance,

f) one representative of a voluntary health organization who currently services the hemophilia and related bleeding disorders community, and

g) one patient or caregiver of a patient who is living with hemophilia or a related bleeding disorder

5) Members of the committee shall receive no compensation, but may be reimbursed for actual expenses incurred in the carrying out of their duties. No more than a majority of the voting members may be of the same political party.

Section 6C. Hemophilia Advisory Committee Rules and Regulations

The department shall promulgate all rules and regulations necessary to effectuate the purposes of this section and sections six A and six B of this chapter.

SECTION 2. The act shall take effect upon its passage.