2015 -- H 5297

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LC000901

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     STATE OF RHODE ISLAND

IN GENERAL ASSEMBLY

JANUARY SESSION, A.D. 2015

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A N   A C T

RELATING TO HUMAN SERVICES - RARE DISEASE COMMUNITY SUPPORT,

RESOURCE COORDINATION, AND QUALITY OF LIFE ACT OF 2015

     Introduced By: Representatives Kazarian, and Amore

     Date Introduced: February 04, 2015

     Referred To: House Health, Education & Welfare

     It is enacted by the General Assembly as follows:

     SECTION 1. Title 40 of the General Laws entitled "HUMAN SERVICES" is hereby

amended by adding thereto the following chapter:

CHAPTER 23

RARE DISEASE COMMUNITY SUPPORT, RESOURCE COORDINATION, AND QUALITY

OF LIFE ACT OF 2015

     40-23-1. Rhode Island Rare Disease Community Support, Resource Coordination,

and Quality of Life Act of 2015. – Purpose and declarations. – (a) The Rhode Island general

assembly hereby finds, determines, and declares that rare disease survivors face early causes of

mortality, death and permanent, long-term disability in Rhode Island; state resources are not

coordinated for survivors and their family caregivers to provide for better access to appropriate

state social services; and health coverage is often denied or restricted upon diagnosis, treatments

are not usually covered, and information on locally-based clinical trials are not well-promoted. If

these resources are better coordinated, mortality will be reduced, quality of life will improve,

necessity of accessing state resources may decline overtime, and the ability for rare disease

survivors to live independently will increase.

     (b) The Rhode Island general assembly further finds that the establishment of a state rare

disease community advisory council will ensure that state-of-the-art information on rare disease

education, treatment, and access to care is available to health care providers and survivors. This

advisory council will serve as a consensus group designed to coordinate efforts in state resources,

private entities, and social services, including bringing additional monies to the state to fund

improvements in the treatment of rare diseases.

     40-23-2. Rare disease community advisory council - Membership. – (a) The director

of the department of human services shall appoint an advisory council to serve as a statewide

commission designed to coordinate efforts for the rare disease community. The director may

assign staff, upon availability of funds, to assist the advisory council and shall provide it with

suitable accommodations for its meetings. Members appointed to the advisory council shall

include:

     (1) Up to five (5) physicians actively involved in rare disease care from the following

fields:

     (i) Neurology;

     (ii) Cardiology;

     (iii) Primary care;

     (iv) Orthopedics; and

     (v) Emergency care.

     (2) One registered professional nurse or nurse practitioner actively involved in rare

disease care;

     (3) One hospital administrator or designee from each hospital that provides care to rare

disease survivors;

     (4) One representative each from the public health field actively involved in public health

education on rare disease or chronic conditions management from the department of human

services and the department of health;

     (5) One representative from a rehabilitation facility that provides services to rare disease

survivors;

     (6) One rare disease survivor over the age of eighteen (18);

     (7) One caregiver of a pediatric rare disease survivor;

     (8) One representative from the rare disease united foundation;

     (9) One representative from Rhode Island Quality Partners or state-recognized quality

improvement organization (QIO);

     (10) One representative from a minority health organization involved in rare disease care;

     (11) One representative from each licensed health care agency category that provides care

for rare disease survivors;

     (12) One representative from an organization that provides respite care services for rare

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disease caregivers; and

     (13) One licensed educator involved in providing or coordinating educational services to

a rare disease pediatric survivor.

     (b) The advisory council shall advise the Rhode Island general assembly, the governor,

and the director of the department of human services, and have the following duties;

     (1) Undertake a statistical and qualitative examination of the incidence and causes of rare

diseases and develop a profile of the social and economic burden of rare diseases in Rhode Island;

     (2) Receive and consider reports and testimony from individuals, the state department of

health, community-based organizations, voluntary health organizations, healthcare providers, and

other public and private organizations statewide and of national significance to rare diseases to

learn more about their contributions to rare disease treatment and their ideas for the improvement

of rare disease care in Rhode Island;

     (3) Develop methods to publicize the profile of rare disease burden in Rhode Island;

     (4) Identify research-based strategies that are effective in preventing and controlling risks

of co-morbidities for rare disease based on the science available from rare disease related

organizations;

     (5) Determine the burden that delayed or inappropriate treatment has on the quality of

patients’ lives and the associated financial burden on them and the state;

     (6) Study the economic impact of early rare disease treatment with regard to quality of

care, reimbursement issues, and rehabilitation, and related services;

     (7) Research and determine how to ensure that the public and healthcare providers are

sufficiently informed of the most effective strategies for rare disease awareness and care;

     (8) Evaluate the current system of treatment and develop recommendations to improve all

aspects of increasing rare disease survival rates;

     (9) Research and determine the most appropriate method to collect data which shall

include a record of the cases of rare diseases that occur in Rhode Island and such information

concerning the cases as it shall deem necessary and appropriate in order to conduct thorough and

complete epidemiological surveys of rare diseases diagnosed in Rhode Island and to apply

appropriate preventative and control measures where possible;

     (10) Identify best practices on rare disease care in other states and at the federal level that

will improve rare disease care in Rhode Island, including the feasibility and proposed structure of

developing a rare disease information and patient support network;

     (11) Research and obtain any public or private funding available to improve rare disease

care in Rhode Island;

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     (12) Complete and maintain a statewide comprehensive rare disease plan to the general

public, state and local officials, various public and private organizations and associations,

business and industries, agencies, potential funders, and other community resources;

     (13) Develop a registry of all rare diseases diagnosed within the state to determine any

genetic and environmental contributors to rare diseases; and

     (14) Identify and facilitate specific commitments to help implement the plan and all

advisory council activities.

     (c) The members of the advisory council shall serve without compensation; provided,

however the members shall be reimbursed for their reasonable costs of attendance, including, but

not limited to mileage and parking fees.

     (d) The advisory council shall convene within one hundred and eighty (180) days of the

effective date of this chapter, and shall submit a preliminary report to state agencies, the general

assembly and the governor annually. The reports shall address the plans, actions, and resources

needed to achieve its goals and progress in achieving implementation of the plan to reduce the

burden from rare diseases in Rhode Island. The reports shall include an accounting of funds

expended, funds received from grants, and anticipated funding needs and related cost savings for

full implementation of recommended plans and programs.

     Any health care information requested or obtained by the advisory council or otherwise

in the performance of its duties, shall be provided in a format that does not contain individually-

identifiable information.

     SECTION 2. This act shall take effect upon passage.

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EXPLANATION

BY THE LEGISLATIVE COUNCIL

OF

A N   A C T

RELATING TO HUMAN SERVICES - RARE DISEASE COMMUNITY SUPPORT,

RESOURCE COORDINATION, AND QUALITY OF LIFE ACT OF 2015

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     This act would establish the "Rhode Island rare disease community advisory council"

within the department of human services. The council would aid the state in developing an action

plan that addresses the coordination of resources to efficiently provide care for Rhode Islanders

living with rare diseases and their family caregivers. The members would serve without

compensation, but would be reimbursed for their reasonable costs of attendance.

     This act would take effect upon passage.

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