2021 -- S 0246

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LC001221

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     STATE OF RHODE ISLAND

IN GENERAL ASSEMBLY

JANUARY SESSION, A.D. 2021

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A N   A C T

RELATING TO HEALTH AND SAFETY – NONDISCRIMINATION IN ACCESS TO

ANATOMICAL GIFTS AND ORGAN TRANSPLANT ACT (ISAAC'S LAW)

     

     Introduced By: Senators Acosta, Miller, Mack, Calkin, Quezada, Kallman, Bell,
Valverde, and Mendes

     Date Introduced: February 10, 2021

     Referred To: Senate Judiciary

     It is enacted by the General Assembly as follows:

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     SECTION 1. Legislative Findings and Declaration.

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     The general assembly finds and declares that:

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     (1) A mental or physical disability does not diminish a person’s right to health care;

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     (2) The "Americans with Disabilities Act of 1990", 42 U.S.C. § 12101, prohibits

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discrimination against persons with disabilities, yet many individuals with disabilities still

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experience discrimination in accessing critical health care services;

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     (3) Nationwide, individuals with mental and physical disabilities have been denied life-

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saving organ transplants based on assumptions that their lives are less worthy, that they are

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incapable of complying with post-transplant medical requirements, or that they lack adequate

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support systems to ensure compliance with post-transplant medical requirements;

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     (4) Although organ transplant centers must consider medical and psychosocial criteria

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when determining if a patient is suitable to receive an organ transplant, transplant centers that

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participate in Medicare, Medicaid, and other federally funded programs are required to use patient

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selection criteria that result in a fair and nondiscriminatory distribution of organs; and,

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     (5) Rhode Island residents in need of organ transplants are entitled to assurances that they

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will not encounter discrimination on the basis of a disability.

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     SECTION 2. Title 23 of the General Laws entitled "HEALTH AND SAFETY" is hereby

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amended by adding thereto the following chapter:

 

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CHAPTER 95

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NONDISCRIMINATION IN ACCESS TO ANATOMICAL GIFTS AND ORGAN

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TRANSPLANT ACT (ISAAC'S LAW)

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     23-95-1. Short title.

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     This chapter shall be known and may be cited as the "Nondiscrimination in Access to

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Anatomical Gifts and Organ Transplants Act (Isaac's Law)".

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     23-95-2. Legislative purpose.

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     It is the purpose of this chapter to prohibit discrimination against a potential organ

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transplant recipient based solely on a person’s physical or mental disability.

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     23-95-3. Definitions.

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     As used in this chapter, the following words and terms shall have the following meanings

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unless the context shall clearly indicate another or different meaning or intent:

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     (1) "Anatomical gift" means a donation of all or part of a human body to take effect after

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the donor’s death for the purpose of transplantation or transfusion.

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     (2) "Auxiliary aids or services" means an aid or service that is used to provide information

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to an individual with a cognitive, developmental, intellectual, neurological, or physical disability

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and is available in a format or manner that allows the individual to better understand the

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information. An auxiliary aid or service may include:

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     (i) Qualified interpreters or other effective methods of making aurally delivered materials

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available to persons with hearing impairments;

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     (ii) Qualified readers, taped texts, texts in accessible electronic format, or other effective

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methods of making visually delivered materials available to persons with visual impairments;

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     (iii) Supported decision-making services, including:

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     (A) The use of a support individual to communicate information to the individual with a

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disability, ascertain the wishes of the individual, or assist the individual in making decisions;

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     (B) The disclosure of information to a legal guardian, authorized representative, or another

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individual designated by the individual with a disability for such purpose, as long as the disclosure

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is consistent with state and federal law, including the federal "Health Insurance Portability and

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Accountability Act of 1996," 42 U.S.C. 1320d et seq., and any regulations promulgated by the

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United States Department of Health and Human Services to implement the act;

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     (C) If an individual has a court-appointed guardian or other individual responsible for

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making medical decisions on behalf of the individual, any measures used to ensure that the

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individual is included in decisions involving the individual’s health care and that medical decisions

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are in accordance with the individual’s own expressed interests;

 

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     (D) Any other aid or service that is used to provide information in a format that is easily

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understandable and accessible to individuals with cognitive, neurological, developmental or

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intellectual disabilities, including assistive communication technology.

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     (3) "Covered entity" means:

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     (i) Any licensed provider of health care services, including licensed health care

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practitioners, hospitals, nursing facilities, laboratories, intermediate care facilities, psychiatric

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residential treatment facilities, institutions for individuals with intellectual or developmental

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disabilities, and prison health centers;

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     (ii) Any entity responsible for matching anatomical gift donors to potential recipients.

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     (4) "Disability" means a disability as defined in § 42-87-1 in accordance with the

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Americans with Disabilities Act of 1990, as amended by the ADA Amendments Act of 2008, at 42

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U.S.C. § 12102.

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     (5) "Organ transplant" means the transplantation or transfusion of a part of a human body

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into the body of another for the purpose of treating or curing a medical condition.

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     (6) "Qualified recipient" means an individual who has a disability and meets the essential

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eligibility requirements for the receipt of an anatomical gift with or without any of the following:

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     (i) Individuals or entities available to support and assist the individual with an anatomical

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gift or transplantation;

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     (ii) Auxiliary aids or services;

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     (iii) Reasonable modifications to the policies, practices, or procedures of a covered entity,

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including modifications to allow for either or both of the following:

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     (A) Communication with one or more individuals or entities available to support or assist

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with the recipient's care and medication after surgery or transplantation;

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     (B) Consideration of support networks available to the individual, including family,

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friends, and home and community-based services, including home and community-based services

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funded through Medicaid, Medicare, another health plan in which the individual is enrolled, or any

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program or source of funding available to the individual, when determining whether the individual

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is able to comply with post-transplant medical requirements.

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      23-95-4. Discrimination prohibited.

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     (a) The provisions of this chapter shall apply to all stages of the organ transplant process.

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     (b) A covered entity shall not, solely on the basis of an individual's disability:

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     (1) Consider the individual ineligible to receive an anatomical gift or organ transplant;

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     (2) Deny medical services or other services related to organ transplantation, including

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diagnostic services, evaluation, surgery, counseling, post-operative treatment and services;

 

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     (3) Refuse to refer the individual to a transplant center or other related specialist for the

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purpose of being evaluated for or receiving an organ transplant;

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     (4) Refuse to place a qualified recipient on an organ transplant waiting list;

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     (5) Place a qualified recipient on an organ transplant waiting list at a lower priority position

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than the position at which the individual would have been placed if the individual did not have a

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disability; or,

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     (6) Refuse insurance coverage for any procedure associated with being evaluated for or

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receiving an anatomical gift or organ transplant, including post-transplantation and post-transfusion

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care.

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     (c) Notwithstanding subsection (b) of this section, a covered entity may take an individual’s

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disability into account when making treatment or coverage recommendations or decisions, solely

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to the extent that the disability has been found by a physician or surgeon, following personalized

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evaluation of the individual, to be medically significant to the provision of the anatomical gift.

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     (d) If an individual has the necessary support system to assist the individual in complying

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with post-transplant medical requirements, a covered entity may not consider the individual's

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inability to independently comply with post-transplant medical requirements to be medically

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significant for the purposes of subsection (c) of this section.

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     (e) A covered entity must make reasonable modifications to its policies, practices, or

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procedures to allow individuals with disabilities access to transplantation-related services,

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including diagnostic services, surgery, coverage, post-operative treatment, and counseling, unless

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the entity can demonstrate that making such modifications would fundamentally alter the nature of

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such services.

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     (f) A covered entity must take steps necessary to ensure that an individual with a disability

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is not denied medical services or other services related to organ transplantation, including

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diagnostic services, surgery, post-operative treatment, or counseling, due to the absence of auxiliary

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aids or services, unless the covered entity demonstrates that taking the steps would fundamentally

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alter the nature of the medical services or other services related to organ transplantation or would

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result in an undue burden for the covered entity.

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     (g) Nothing in this section shall be deemed to require a covered entity to make a referral or

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recommendation for or perform a medically inappropriate organ transplant.

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     (h) A covered entity shall otherwise comply with the requirements of Titles II and III of

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the Americans with Disabilities Act of 1990, as amended by the ADA Amendments Act of 2008.

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     23-95-5. Enforcement.

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     (a) Whenever it appears that a covered entity has violated or is violating any of the

 

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provisions of this chapter, the affected individual may commence a civil action for injunctive and

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other equitable relief against the covered entity for purposes of enforcing compliance with this

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chapter. The action may be brought in the district court for the county where the affected individual

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resides or resided or was denied the organ transplant or referral.

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     (b) In an action brought under this chapter, the court must give priority on its docket and

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expedited review, and may grant injunctive or other equitable relief, including:

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     (1) Requiring auxiliary aids or services to be made available for a qualified recipient;

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     (2) Requiring the modification of a policy, practice or procedure of a covered entity; or,

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     (3) Requiring facilities be made readily accessible to and usable by a qualified recipient.

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     (c) Nothing in this chapter is intended to limit or replace available remedies under the

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Americans with Disabilities Act of 1990, as amended by the ADA Amendments Act of 2008 or

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any other applicable law.

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     (d) This chapter does not create a right to compensatory or punitive damages against a

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covered entity.

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     23-95-6. Insurance.

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     (a) As used in this section, the following words and terms shall have the following

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meanings:

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     (1) "Covered person" means a policyholder, subscriber, enrollee, member, or individual

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covered by a health benefit plan.

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     (2) "Health benefit plan" means a policy, contract, certificate, or agreement entered into,

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offered, or issued by a health insurer to provide, deliver, arrange for, pay for, or reimburse any of

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the costs of health care services. "Health benefit plan" shall not include a plan providing coverage

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for excepted benefits and short-term policies that have a term of less than twelve (12) months.

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     (3) "Health insurer" means an entity subject to the insurance laws and regulations of this

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state, or subject to the jurisdiction of the Rhode Island health insurance commissioner, that

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contracts or offers to contract to provide, deliver, arrange for, pay for, or reimburse any of the costs

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of health care services, including through a health benefit plan as defined in this section, and shall

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include a sickness and accident insurance company, a health maintenance organization, a preferred

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provider organization, or any similar entity, or any other entity providing a plan of health insurance

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or health benefits.

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     (b) A health insurer that provides coverage for anatomical gifts, organ transplants, or

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related treatment and services shall not:

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     (1) Deny coverage to a covered person solely on the basis of the person’s disability;

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     (2) Deny to a patient eligibility, or continued eligibility, to enroll or to renew coverage

 

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under the terms of the health benefit plan, solely for the purpose of avoiding the requirements of

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this section;

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     (3) Penalize or otherwise reduce or limit the reimbursement of an attending provider, or

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provide monetary or nonmonetary incentives to an attending provider, to induce such provider to

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provide care to an insured or enrollee in a manner inconsistent with this section; or,

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     (4) Reduce or limit coverage benefits to a patient for the medical services or other services

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related to organ transplantation performed pursuant to this section as determined in consultation

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with the attending physician and patient.

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     (c) In the case of a health benefit plan maintained pursuant to one or more collective

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bargaining agreements between employee representatives and one or more employers, any plan

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amendment made pursuant to a collective bargaining agreement relating to the plan which amends

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the plan solely to conform to any requirement imposed pursuant to this section shall not be treated

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as a termination of the collective bargaining agreement.

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     (d) Nothing in this section shall be deemed to require a health insurer to provide coverage

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for a medically inappropriate organ transplant.

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     23-95-7. Severability.

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     If any clause, sentence, paragraph, section, or part of this chapter shall be adjudged by any

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court of competent jurisdiction to be invalid, that judgment shall not affect, impair, or invalidate

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the remainder of the chapter but shall be confined in its operation to the clause, sentence, paragraph,

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section, or part directly involved in the controversy in which that judgment shall have been

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rendered.

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     SECTION 3. Chapter 27-18 of the General Laws entitled "Accident and Sickness Insurance

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Policies" is hereby amended by adding thereto the following section:

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     27-18-85. Prohibition on discrimination in organ transplants.

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     Pursuant to chapter 95 of title 23, any health insurer that provides coverage for anatomical

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gifts, organ transplants, or related treatment and services shall not:

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     (1) Deny coverage to a covered person solely on the basis of the person's disability;

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     (2) Deny to a patient eligibility, or continued eligibility, to enroll or to renew coverage

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under the terms of the health benefit plan, solely for the purpose of avoiding the requirements of

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this section;

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     (3) Penalize or otherwise reduce or limit the reimbursement of an attending provider, or

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provide monetary or nonmonetary incentives to an attending provider, to induce such provider to

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provide care to an insured or enrollee in a manner inconsistent with this section; or

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     (4) Reduce or limit coverage benefits to a patient for the medical services or other services

 

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related to organ transplantation performed pursuant to this section as determined in consultation

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with the attending physician and patient.

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     SECTION 4. Chapter 27-19 of the General Laws entitled "Nonprofit Hospital Service

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Corporations" is hereby amended by adding thereto the following section:

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     27-19-77. Prohibition on discrimination in organ transplants.

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     Pursuant to chapter 95 of title 23, any nonprofit hospital that provides for anatomical gifts,

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organ transplants, or related treatment and services shall not:

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     (1) Deny coverage to a covered person solely on the basis of the person's disability;

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     (2) Deny to a patient eligibility, or continued eligibility, to enroll or to renew coverage

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under the terms of the health benefit plan, solely for the purpose of avoiding the requirements of

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this section;

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     (3) Penalize or otherwise reduce or limit the reimbursement of an attending provider, or

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provide monetary or nonmonetary incentives to an attending provider, to induce such provider to

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provide care to an insured or enrollee in a manner inconsistent with this section; or

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     (4) Reduce or limit coverage benefits to a patient for the medical services or other services

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related to organ transplantation performed pursuant to this section as determined in consultation

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with the attending physician and patient.

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     SECTION 5. Chapter 27-20 of the General Laws entitled "Nonprofit Medical Service

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Corporations" is hereby amended by adding thereto the following section:

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     27-20-73. Prohibition on discrimination in organ transplants.

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     Pursuant to chapter 95 of title 23, any nonprofit medical service corporation that provides

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for anatomical gifts, organ transplants, or related treatment and services shall not:

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     (1) Deny coverage to a covered person solely on the basis of the person’s disability;

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     (2) Deny to a patient eligibility, or continued eligibility, to enroll or to renew coverage

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under the terms of the health benefit plan, solely for the purpose of avoiding the requirements of

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this section;

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     (3) Penalize or otherwise reduce or limit the reimbursement of an attending provider, or

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provide monetary or nonmonetary incentives to an attending provider, to induce such provider to

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provide care to an insured or enrollee in a manner inconsistent with this section; or

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     (4) Reduce or limit coverage benefits to a patient for the medical services or other services

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related to organ transplantation performed pursuant to this section as determined in consultation

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with the attending physician and patient.

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     SECTION 6. Chapter 27-41 of the General Laws entitled "Health Maintenance

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Organizations" is hereby amended by adding thereto the following section:

 

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     27-41-90. Prohibition on discrimination in organ transplants.

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     Pursuant to chapter 95 of title 23, any nonprofit medical service corporation that provides

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coverage for anatomical gifts, organ transplants, or related treatment and services shall not:

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     (1) Deny coverage to a covered person solely on the basis of the person’s disability;

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     (2) Deny to a patient eligibility, or continued eligibility, to enroll or to renew coverage

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under the terms of the health benefit plan, solely for the purpose of avoiding the requirements of

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this section;

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     (3) Penalize or otherwise reduce or limit the reimbursement of an attending provider, or

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provide monetary or nonmonetary incentives to an attending provider, to induce such provider to

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provide care to an insured or enrollee in a manner inconsistent with this section; or

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     (4) Reduce or limit coverage benefits to a patient for the medical services or other services

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related to organ transplantation performed pursuant to this section as determined in consultation

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with the attending physician and patient.

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     SECTION 7. This act shall take effect upon passage.

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EXPLANATION

BY THE LEGISLATIVE COUNCIL

OF

A N   A C T

RELATING TO HEALTH AND SAFETY – NONDISCRIMINATION IN ACCESS TO

ANATOMICAL GIFTS AND ORGAN TRANSPLANT ACT (ISAAC'S LAW)

***

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     This act would prohibit discrimination against a potential organ transplant recipient based

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solely on a physical or mental disability. Specifically, an individual who is a candidate to receive

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an anatomical gift would not be deemed ineligible or denied insurance coverage solely based on

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the individual's physical or mental disability, except to the extent that the physical or mental

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disability has been found by a physician or surgeon to be medically significant to the provision of

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the anatomical gift.

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     This act would take effect upon passage.

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