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Arkansas General Assembly· SB 136Notification that SB136 is now Act 201

An act TO CREATE THE RIGHT TO TRY INDIVIDUALIZED 10 INVESTIGATIONAL TREATMENT ACT, the official text

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Stricken language would be deleted from and underlined language would be added to present law.

1 State of Arkansas                  A Bill
2 95th General Assembly

3 Regular Session, 2025                                            SENATE BILL 136

4

5 By: Senator J. Boyd

6 By: Representative Gramlich

7

8                              For An Act To Be Entitled

9   AN ACT TO CREATE THE RIGHT TO TRY INDIVIDUALIZED

10  INVESTIGATIONAL TREATMENT ACT; TO ESTABLISH

11  PROCEDURES FOR PATIENTS TO TRY INDIVIDUALIZED

12  INVESTIGATIONAL TREATMENTS; TO ENSURE THAT PATIENTS

13  WITH LIFE-THREATENING OR SEVERELY DEBILITATING

14  ILLNESS HAVE ACCESS TO INDIVIDUALIZED INVESTIGATIONAL

15  TREATMENT; AND FOR OTHER PURPOSES.

16

17

18                                   Subtitle

19                       TO CREATE THE RIGHT TO TRY

20                       INDIVIDUALIZED INVESTIGATIONAL TREATMENT

21                       ACT; AND TO ENSURE THAT PATIENTS HAVE

22                       ACCESS TO INDIVIDUALIZED INVESTIGATIONAL

23                       TREATMENT.

24

25 BE IT ENACTED BY THE GENERAL ASSEMBLY OF THE STATE OF ARKANSAS:

26

27  SECTION 1. Arkansas Code Title 20, Chapter 15, is amended to add an

28 additional subchapter to read as follows:

29  Subchapter 25 -- Right to Try Individualized Investigational Treatment Act

30

31  20-15-2501. Title.

32  This subchapter shall be known and may be cited as the "Right to Try

33 Individualized Investigational Treatment Act".

34

35  20-15-2502. Definitions.

36  As used in this subchapter:

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1   (1) "Costs associated with the manufacture of the individualized

2 investigational treatment" means the actual out-of-pocket costs incurred in

3 providing the individualized investigational treatment to the patient in his

4 or her specific case;

5   (2) "Eligible facility" means an institution that is operating

6 under a Federalwide Assurance for the Protection of Human Subjects under 42

7 U.S.C. � 289(a) and 45 C.F.R. Part 46, as existing on January 1, 2025, and is

8 subject to the laws, regulations, policies, and guidelines relating to

9 Federalwide Assurance for the Protection of Human Subjects, including

10 renewals or updates;

11  (3) "Eligible patient" means a person who meets the requirements

12 of eligibility under � 20-15-2503;

13  (4) "Individualized investigational treatment" means a drug,

14 biological product, or device that is unique to and produced exclusively for

15 use for an individual patient, based on his or her own genetic profile,

16 including without limitation an individualized gene therapy antisense

17 oligonucleotide and individualized neoantigen vaccines;

18  (5) "Life-threatening" means a disease or condition:

19  (A) Where the likelihood of death is high unless the

20 course of the disease or condition is interrupted; and

21  (B) With a potentially fatal outcome, where the endpoint

22 of clinical trial analysis is survival;

23  (6) "Physician" means an individual licensed to practice

24 medicine in the State of Arkansas under the Arkansas Medical Practices Act, �

25 17-95-201 et seq., � 17-95-301 et seq., and � 17-95-401 et seq.; and

26  (7) "Severely debilitating" means a disease or condition that

27 causes major irreversible morbidity.

28

29  20-15-2503. Eligibility.

30  In order for a patient to access an individualized investigational

31 treatment under this subchapter, a physician shall document in the patient's

32 medical record and chart that the patient:

33  (1) Has a life-threatening or severely debilitating illness;

34  (2) Has considered all other treatment options currently

35 approved by the United States Food and Drug Administration;

36  (3) Has received a recommendation from the physician for an

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1 individualized investigational treatment based on analysis of the patient's

2 genomic sequence, human chromosomes, deoxyribonucleic acid, ribonucleic acid,

3 genes, gene products such as enzymes and other types of proteins, or

4 metabolites;

5            (4)(A) Has given written, informed consent for the use of the

6 individualized investigational treatment.

7                   (B) If the patient is a minor or lacks the mental capacity

8 to provide informed consent, a parent or legal guardian may provide written,

9 informed consent on the patient's behalf.

10                  (C) The written, informed consent shall include at a

11 minimum:

12                  (i) An explanation of the currently approved

13 products and treatments for the disease or condition of which the patient

14 suffers;

15                  (ii) An attestation that the patient, or if the

16 patient is a minor or lacks the mental capacity to concur, a parent or legal

17 guardian, concurs with his or her physician in believing that all currently

18 approved and conventionally recognized treatments are unlikely to prolong the

19 patient's life;

20                  (iii) Clear identification of the specific proposed

21 individualized investigational treatment that the patient is seeking to use;

22                  (iv) A description of the potentially best and worst

23 outcomes of using the individualized investigational treatment and a

24 realistic description of the most likely outcome, including without

25 limitation the possibility that new, unanticipated, different, or worse

26 symptoms might result, and that death could be hastened by the individualized

27 investigational treatment, which is based on the physician's knowledge of the

28 individualized investigational treatment in conjunction with an awareness of

29 the patient's condition;

30                  (v) A statement that the patient's health plan or

31 third-party administrator and provider are not obligated to pay for any care

32 or treatments consequent to the use of the individualized investigational

33 treatment, unless the patient's health plan or third-party administrator and

34 provider are specifically required to do so by law or contract;

35                  (vi) A statement that the patient's eligibility for

36 hospice care may be withdrawn if the patient receives an individualized

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1 investigational treatment and that care may be reinstated if the

2 individualized investigational treatment ends and the patient meets hospice

3 eligibility requirements; and

4                 (vii) A statement that the patient understands that

5 he or she is liable for all expenses consequent to the use of the

6 individualized investigational treatment and that this liability extends to

7 the patient's estate, unless a contract between the patient and the

8 manufacturer of the individualized investigational treatment states

9 otherwise; and

10              (5) Has received written documentation from a physician that the

11 patient meets the requirements of this subchapter.

12

13  20-15-2504. Availability.

14  (a) A manufacturer of an individualized investigational treatment

15 operating within an eligible facility may make available an individualized

16 investigational treatment available to eligible patients under this

17 subchapter.

18  (b) This section does not require that a manufacturer make available

19 an individualized investigational treatment to an eligible patient.

20

21  20-15-2505. Costs.

22  (a) A manufacturer of an individualized investigational treatment or

23 an eligible facility may:

24              (1) Provide an individualized investigational treatment to an

25 eligible patient without receiving compensation; or

26              (2) Require an eligible patient to pay the costs associated with

27 the manufacture of the individualized investigational treatment.

28  (b) If an eligible patient dies while receiving individualized

29 investigational treatment, the eligible patient's heirs are not liable for

30 any outstanding debt to the manufacturer related to the individualized

31 investigational treatment.

32

33  20-15-2506. Insurance coverage.

34  (a) An insurance company:

35              (1) May, but is not required to, provide coverage for an

36 individualized investigational treatment; and

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1   (2) Shall not deny coverage for an item or service that is

2 otherwise covered by an insurance contract between the eligible person and

3 the insurance company.

4   (b) This subchapter does not affect any mandatory healthcare coverage

5 for participation in clinical trials or expand the health care coverage

6 required of an insurance company.

7

8   20-15-2507. Prohibited sanctions.

9   The recommendation, prescription, treatment, or participation in the

10 treatment of a life-threatening or severely debilitating illness with an

11 individualized investigational treatment shall not permit:

12  (1) A state agency or licensing board to revoke a license, fail

13 to renew a license, or take any other action against a medical professional's

14 license or a healthcare provider's license;

15  (2) A state agency, state official, or employee or agent of the

16 state to block or attempt to block an eligible patient's access to an

17 individualized investigational treatment; or

18  (3) An action against a hospital's Medicare certification.

19

20  20-15-2508. Counseling, advice, or recommendation not violation.

21  The counseling, advice, or recommendation consistent with medical

22 standards of care by a medical professional licensed under state law is not a

23 violation of this subchapter.

24

25  20-15-2509. Immunity.

26  (a) Except in the case of gross negligence or willful misconduct, a

27 person or entity that manufacturers, imports, distributes, prescribes,

28 dispenses, administers, or is otherwise involved in the care of an eligible

29 patient using an individualized investigational treatment is immune from

30 civil liability for any loss, damage, or injury arising out of, relating to,

31 or resulting from the individualized investigational treatment if the person

32 or entity is substantially complying in good faith with this subchapter and

33 has exercised reasonable care.

34  (b) This subchapter does not require a medical professional who is

35 licensed under the laws of this state to counsel, advise, prescribe,

36 dispense, administer, or otherwise be involved in the care of an eligible

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1 patient using an individualized investigational treatment.

2   (c) This subchapter does not require a hospital licensed under � 20-9-

3 213 to provide any new or additional service related to an individualized

4 investigational treatment, unless approved by the hospital.

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6   20-15-2510. Medicaid coverage.

7   This subchapter does not require the Department of Human Services or

8 the Arkansas Medicaid Program to provide additional coverage for an

9 individualized investigational treatment.

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