HOUSE OF REPRESENTATIVES	H.C.R. NO.	122
TWENTY-EIGHTH LEGISLATURE, 2016
STATE OF HAWAII

HOUSE CONCURRENT

RESOLUTION

 

 

REQUESTING THE CONVENING OF A STATEWIDE RARE DISEASE TASK FORCE.

 

 

 

     WHEREAS, a rare disease is defined as a disease that affects fewer than 200,000 people; and

 

     WHEREAS, there are 7,000 known rare diseases affecting approximately 30,000,000 men, women, and children in the United States; and

 

WHEREAS, out of a population of 1,431,000 persons in the State, more than 143,000 persons in Hawaii are affected by a rare disease, with more than half of these rare diseases specific to the Pacific region; and

 

WHEREAS, while the exact cause for many rare diseases remains unknown, 80 percent of rare diseases are genetic in origin and can be linked to mutations in a single gene or in multiple genes and these genetic diseases may be passed from generation to generation; and

 

     WHEREAS, a person suffering from a rare disease faces a wide range of challenges, including:

 

(1)  Delayed diagnosis;

 

(2)  Misdiagnosis;

 

(3)  Shortage of medical specialists familiar with and able to provide treatment for rare diseases;

 

(4)  Prohibitive cost of treatment; and

 

(5)  Lack of access to therapies and medication that are used by doctors to treat rare diseases but that may not be approved by the federal Food and Drug Administration for a specific treatment; and

 

     WHEREAS, in recent years, researchers have made considerable progress in developing diagnostic tools, treatment protocols, and preventative measures for a variety of rare diseases; however, much more remains to be done in the areas of rare disease research and research and development of new therapeutics; and

 

     WHEREAS, it is sound public policy that an advisory body of qualified persons be convened, including persons living with rare diseases, to:

 

(1)  Encourage and fund research in the development of new treatments for rare diseases; and

 

(2)  Educate medical professionals, government agencies, and the public about rare diseases as an important health issue; now, therefore,

 

     BE IT RESOLVED by the House of Representatives of the Twenty-eighth Legislature of the State of Hawaii, Regular Session of 2016, the Senate concurring, that the Department of Health is requested to convene a statewide rare disease task force to be named the Hawaii Rare Disease Task Force (Task Force) for the purpose of:

 

(1)  Coordinating statewide efforts regarding the study of the incidence of rare diseases within the State and the status of rare diseases in the community;

 

(2)  Acting in an advisory capacity on rare diseases to the Legislature, to state departments, agencies, commissions, authorities, and to private agencies that provide services to or are charged with the care of persons with rare diseases;

 

(3)  Coordinating the performance of its duties with other state advisory bodies, community-based organizations, and other public and private organizations related to rare diseases to ensure greater cooperation between state and federal agencies, including the United States National Institutes of Health and the United States Food and Drug Administration, regarding the research, diagnosis, and treatment of rare diseases, including by disseminating the research, best practices, and policy recommendations of the Task Force using common research collection and dissemination procedures;

 

(4)  Researching and determining the most appropriate method to collect rare disease data and information regarding patients with rare diseases in order to conduct thorough and complete surveys of rare diseases diagnosed in the State, subject to all applicable privacy laws, and ensuring that research and surveys are conducted in a coordinated manner that is interoperable with similar research being conducted at the state and federal levels;

 

(5)  Researching and identifying priorities relating to quality, cost-effectiveness, and accessibility of treatment and services for persons with rare diseases in the State and developing policy recommendations on those issues;

 

(6)  Identifying best practices for rare disease care from other states and at the national level to improve rare disease care in the State;

 

(7)  Developing effective strategies to raise public awareness of rare diseases in Hawaii; and

 

(8)  Seeking out and applying for or publicizing information about, as appropriate, grant funding opportunities from the federal government, private foundations, or other sources that may be available for programs related to rare diseases; and

BE IT FURTHER RESOLVED that the Task Force comprise:

 

(1)  The Director of Health or the Director's designee;

 

(2)  The heads of any other state agencies concerned with the provision of care to persons with rare diseases, to be appointed by the Director of Health; and

 

(3)  The following members of the public, to be appointed by the Director of Health:

 

(A)  Two physicians licensed to practice in the State who have expertise in treating patients with rare diseases, one of whom shall be a pediatrician who provides care to children with rare diseases;

 

(B)  A registered nurse licensed to practice in the State who has expertise in providing care to patients with rare diseases;

 

(C)  Two representatives of hospitals in the State;

 

(D)  A representative of the health insurance industry;

 

(E)  A representative of the biopharmaceutical industry;

 

(F)  A representative of the scientific community who is engaged in rare disease research;

 

(G)  Two parents of a child with a rare disease; and

 

(H)  Two representatives of patient organizations that operate within the State; and

 

     BE IT FURTHER RESOLVED that the Task Force is requested to:

 

     (1)  Organize as soon as practicable after the appointment of its members;

(2)  Select a chairperson and vice chairperson from among its members;

 

(3)  Appoint a secretary who need not be a Task Force member;

 

(4)  Meet at least three times annually; and

 

(5)  Report to the Department of Health and the Legislature biennially on its activities, including findings and recommendations on issues relating to quality, cost effectiveness, and accessibility of treatments and services to persons with rare diseases in the State; and

 

BE IT FURTHER RESOLVED that upon or after the initial convening of the Task Force, the Task Force may advise the Department of Health on any additional at-large appointments to the Task Force that are necessary for the Task Force to carry out its duties within available funding, which may be made on an adhoc basis; and

 

     BE IT FURTHER RESOLVED that the Task Force may seek the assistance and services of employees of any state or county department, board, bureau, commission, or agency as the Task Force may require and as may be available to the Task Force; and

 

     BE IT FURTHER RESOLVED that the Department of Health is requested to:

 

(1)  Research and provide to the Legislature information on existing sources of funding to finance the implementation and operations of the Task Force; and

 

(2)  Provide staff services to the Task Force as necessary; and

 

BE IT FURTHER RESOLVED that the Task Force is requested to submit an initial report to the Legislature on its progress no later than 20 days prior to the convening of the Regular Session of 2017, and, thereafter, submit subsequent reports biennially to the Legislature no later than 20 days prior to the convening of the regular session in each odd-numbered year; and

 

BE IT FURTHER RESOLVED that certified copy of this Concurrent Resolution be transmitted to the Director of Health.

 

 

 

	OFFERED BY:	_____________________________

Report Title: 

Statewide Rare Disease Task Force