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:

     SECTION 1. Legislative Findings and Declaration.

     The general assembly finds and declares that:

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

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

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

experience discrimination in accessing critical health care services;

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

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

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

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

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

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

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

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

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

will not encounter discrimination on the basis of a disability.

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

amended by adding thereto the following chapter:

CHAPTER 95

NONDISCRIMINATION IN ACCESS TO ANATOMICAL GIFTS AND ORGAN

TRANSPLANT ACT (ISAAC'S LAW)

     23-95-1. Short title.

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

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

     23-95-2. Legislative purpose.

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

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

     23-95-3. Definitions.

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

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

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

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

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

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

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

information. An auxiliary aid or service may include:

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

available to persons with hearing impairments;

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

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

     (iii) Supported decision-making services, including:

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

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

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

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

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

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

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

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

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

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

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

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

intellectual disabilities, including assistive communication technology.

     (3) "Covered entity" means:

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

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

residential treatment facilities, institutions for individuals with intellectual or developmental

disabilities, and prison health centers;

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

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

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

U.S.C. § 12102.

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

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

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

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

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

gift or transplantation;

     (ii) Auxiliary aids or services;

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

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

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

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

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

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

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

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

is able to comply with post-transplant medical requirements.

      23-95-4. Discrimination prohibited.

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

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

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

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

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

purpose of being evaluated for or receiving an organ transplant;

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

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

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

disability; or,

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

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

care.

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

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

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

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

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

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

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

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

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

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

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

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

such services.

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

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

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

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

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

result in an undue burden for the covered entity.

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

recommendation for or perform a medically inappropriate organ transplant.

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

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

     23-95-5. Enforcement.

     (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

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

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

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

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

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

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

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

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

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

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

any other applicable law.

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

covered entity.

     23-95-6. Insurance.

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

meanings:

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

covered by a health benefit plan.

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

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

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

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

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

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

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

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

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

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

or health benefits.

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

related treatment and services shall not:

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

     (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

this section;

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

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

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

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

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

with the attending physician and patient.

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

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

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

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

as a termination of the collective bargaining agreement.

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

for a medically inappropriate organ transplant.

     23-95-7. Severability.

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

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

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

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

rendered.

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

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

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

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

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

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

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

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

this section;

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

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

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

     (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

with the attending physician and patient.

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

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

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

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

organ transplants, or related treatment and services shall not:

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

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

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

this section;

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

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

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

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

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

with the attending physician and patient.

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

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

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

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

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

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

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

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

this section;

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

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

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

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

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

with the attending physician and patient.

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

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

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

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

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

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

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

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

this section;

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

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

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

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

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

with the attending physician and patient.

     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)

***

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

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

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

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

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

the anatomical gift.

     This act would take effect upon passage.

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