DAR File No. 39133

This rule was published in the March 1, 2015, issue (Vol. 2015, No. 5) of the Utah State Bulletin.

Health, Family Health and Preparedness, Children with Special Health Care Needs

Rule R398-30

Children's Organ Transplants

Notice of Proposed Rule

(New Rule)

DAR File No.: 39133
Filed: 02/09/2015 12:14:16 PM


Purpose of the rule or reason for the change:

The purpose of this filing moves the rule from Health Care Financing, Coverage and Reimbursement (Title R414) to Family Health and Preparedness, Children with Special Health Care Needs (Title R398) where Committee oversight resides.

Summary of the rule or change:

The Kurt Oscarson Children's Organ Transplant Fund (Title 26, Chapter 18a) was established in 1992. This statute provides financial assistance for children who require organ transplants. The purpose of this filing is to move the rule from Health Care Financing, Coverage and Reimbursement to Family Health and Preparedness, Children with Special Health Care Needs where Committee oversight resides. The rule also updates management responsibilities, clarifies implementation and defines the intent of the statute. (DAR NOTE: The proposed repeal of Rule R414-10B is under DAR No. 39134 in this issue, March 1, 2015, of the Bulletin.)

State statutory or constitutional authorization for this rule:

  • Title 26, Chapter 18a

Anticipated cost or savings to:

the state budget:

The Bureau will incur a minimal cost of approximately $50 to $100 to send post cards to families and to reprint the rule.

local governments:

The proposed rule does not affect local government because the new rule will continue to implement current requirements.

small businesses:

The proposed rule does not affect small businesses because the new rule will continue to implement current requirements.

persons other than small businesses, businesses, or local governmental entities:

The proposed rule clarifies statutory requirement and therefore should not have an additional fiscal impact.

Compliance costs for affected persons:

The proposed rule clarifies statutory requirement and therefore should not have an additional fiscal impact.

Comments by the department head on the fiscal impact the rule may have on businesses:

There is no impact to business because the rule does not make any changes to requirements that previously existed under the former Rule R414-10B.

David Patton, PhD, Executive Director

The full text of this rule may be inspected, during regular business hours, at the Division of Administrative Rules, or at:

Family Health and Preparedness, Children with Special Health Care Needs

Direct questions regarding this rule to:

  • Joyce McStotts at the above address, by phone at 801-584-8239, by FAX at 801-584-8488, or by Internet E-mail at jmcstotts@utah.gov

Interested persons may present their views on this rule by submitting written comments to the address above no later than 5:00 p.m. on:


This rule may become effective on:


Authorized by:

David Patton, Executive Director


R398. Health, Family Health and Preparedness, Children with Special Health Care Needs.

R398-30. Children's Organ Transplants.

R398-30-1. Authority and Purpose.

(1) Authority for this rule is found in Title 63G, Chapter 3.

(2) The purpose of this rule is to set forth the process and criteria to determine eligibility for and the awarding of financial assistance to children who need organ transplants.


R398-30-2. Definitions.

(1) "Recipient" means a person who:

(a) is under the age of 18;

(i) is listed for an organ transplant or has received a transplant;

(ii) has resided, or whose legal guardian has resided in Utah for at least six months prior to applying for financial assistance; and

(b) maintains Utah residency while using the fund.

(2) "Initial Medical Expenses" means medical expenses incurred from evaluation of transplant need until two years post transplant or until the age of 18. This includes: assessments and evaluations of prospective listed organ transplant recipients and potential organ donors, surgical costs, treatment, COBRA payments, and spend-downs or other related costs for Medicaid or other public assistance eligibility, but does not include travel and living expenses for recipients or families.

(3) "Responsible party" means the adult individual who signed the transplant fund contract for the transplant recipient in order to receive the financial assistance.


R398-30-3. Allowable Medical Expenses and Organ Transplants.

Recipients may apply for financial assistance for eligible medical expenses for any type and as many organ transplants as needed for the recipient up until age 18. Each recipient shall have a maximum lifetime benefit of $10,000 based on the fund availability and balance. The committee may award a lower lifetime benefit. The fund may pay eligible expenses up to age 20 for services rendered to the recipient while under the age of 18.


R398-30-4. Application Review and Determining Eligibility.

(1) Eligibility for awarding financial assistance shall be based on:

(a) documentation, through physician assessment and evaluation;

(b) whether the person is listed or has received an organ transplant;

(c) verification and status of prior application efforts to other funding sources such as: Medicaid, CHIP, and SSI;

(d) submission by the applicant of a current Patient Financial Responsibility form; and

(e) committee review of an approved Kurt Oscarson Fund application.

(2) If the recipient account is closed, the recipient, upon reapplication, will receive a priority review of a new application, so long as the recipient meets eligibility criteria at the time of reapplication.


R398-30-5. Awarding Financial Assistance to Recipients.

(1) Prior to awarding financial assistance the committee shall review the recipient's application for assistance to determine:

(a) the needs of the recipient both physically and financially; and

(b) the existence of other financial assistance including availability of insurance or other state aid.

(2) Each listed or transplant recipient must apply for Medicaid, Children's Health Insurance Program assistance, or other public health coverage provided by the state, before the committee agrees to award any financial assistance.

(3) As part of the review process, the responsible party of the recipient Shall sign a release to allow all medical records of the child to be released to the Utah Department of Health.

(4) As a part of the review process, the Committee shall consider:

(a) the success rate of the particular organ transplant procedure needed by the child; and

(b) the extent of the threat to the child's life without the organ transplant.

(5) In addition, the committee shall consider the availability of funds in the Children's Organ Transplant fund before awarding financial assistance. The committee may create a waiting list and prioritize the list by financial and medical need. A financial assistance award is not an entitlement. The Children's Organ Transplant fund should not incur a deficit.

(6) The Utah Department of Health shall create a recipient file which shall include information such as: the application, related documentation, correspondence, repayment plans, repayment amounts and the approved contract. This file and documentation will be stored securely for 10 years after the recipient reaches the age of 18.

(7) The committee may review and determine if the recipient is ineligible to receive funds when:

(a) the recipient's account has been reviewed and found to be inactive for two years;

(b) the Utah Department of Health has made three documented attempts to contact the responsible party or recipient to discuss inactivity without response;

(c) there is a violation of the terms of the executed contract;

(d) two years have passed since the transplant; or

(e) the recipient is no longer a Utah resident.


R398-30-6. Terms for Repayment of Financial Assistance Loans.

(1) Financial assistance shall be given in the form of an interest free loan. Terms, including amount and time frame for repayment of loans shall be set forth in an initial contract as agreed to by the responsible party and the Utah Department of Health;

(2) Repayment shall be determined by the Committee prior to the contract being signed;

(3) Medical expenses shall be submitted within 24 months after an eligible service was rendered;

(4) Repayments shall begin monthly starting 24 months after the first check has been issued from the Kurt Oscarson Fund;

(5) The Utah Department of Health shall send out annual invoices on the account status and repayment amount to the responsible party;

(6) The responsible party will be accountable for repayment of the loan; and

(7) The account may go to collections if repayment is not received within the established timeframe as outlined in the contract.


R398-30-7. Waiver or Adjustment of Loan Repayment.

Prior to an account going to collections or if requested by the responsible party, the Committee shall review the file and circumstances involved to determine if an adjustment or waiver should be made to the repayment amount or conditions.


KEY: organ transplants

Date of Enactment or Last Substantive Amendment: 2015

Authorizing, and Implemented or Interpreted Law: 26-1-5


Additional Information

More information about a Notice of Proposed Rule is available online.

The Portable Document Format (PDF) version of the Bulletin is the official version. The PDF version of this issue is available at https://rules.utah.gov/publicat/bull-pdf/2015/b20150301.pdf. The HTML edition of the Bulletin is a convenience copy. Any discrepancy between the PDF version and HTML version is resolved in favor of the PDF version.

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For questions regarding the content or application of this rule, please contact Joyce McStotts at the above address, by phone at 801-584-8239, by FAX at 801-584-8488, or by Internet E-mail at jmcstotts@utah.gov.  For questions about the rulemaking process, please contact the Division of Administrative Rules.