2014 -- S 2277

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LC003569

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     STATE OF RHODE ISLAND

IN GENERAL ASSEMBLY

JANUARY SESSION, A.D. 2014

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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 2014

     

     Introduced By: Senators Doyle, Sosnowski, Ottiano, Cool Rumsey, and Nesselbush

     Date Introduced: February 04, 2014

     Referred To: Senate Health & Human Services

     It is enacted by the General Assembly as follows:

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

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amended by adding thereto the following chapter:

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CHAPTER 23

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RARE DISEASE COMMUNITY SUPPORT, RESOURCE COORDINATION, AND QUALITY

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OF LIFE ACT OF 2014

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     40-23-1. Rhode Island rare disease community support. Resource coordination, and

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quality of life act of 2014. – Purpose and declarations. – (a) The Rhode Island general

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

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

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

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

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

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

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

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survivors to live independently will increase.

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

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

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

 

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

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

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improvements in the treatment of rare diseases.

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

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

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

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

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

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include:

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

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fields:

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     (i) Neurology;

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     (ii) Cardiology;

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     (iii) Primary care;

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     (iv) Orthopedics; and

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     (v) Emergency care.

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

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disease care;

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

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disease survivors;

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

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

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services and the department of health.

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

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survivors;

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

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

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

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

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improvement organization (QIO);

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

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

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for rare disease survivors;

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

 

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disease caregivers; and

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

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a rare disease pediatric survivor.

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

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

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

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

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

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

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

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

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of rare disease care in Rhode Island;

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

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

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

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organizations;

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

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

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

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

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

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

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

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aspects of increasing rare disease survival rates;

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

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

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

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

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appropriate preventative and control measures where possible;

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

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

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developing a rare disease information and patient support network;

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

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care in Rhode Island;

 

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

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

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

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

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genetic and environmental contributors to rare diseases; and

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

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advisory council activities.

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

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

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not limited to mileage and parking fees.

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

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

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

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

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

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

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full implementation of recommended plans and programs.

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

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

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identifiable information.

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     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 2014

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

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within the department of human services in order to aid the state in developing an action plan that

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addresses the coordination of resources to efficiently provide care for Rhode Islanders living with

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rare diseases and their family caregiver. The members would serve without compensation;

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however, they would be reimbursed for their reasonable costs of attendance.

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     This act would take effect upon passage.

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