                                      RECORD IMPOUNDED

                                NOT FOR PUBLICATION WITHOUT THE
                               APPROVAL OF THE APPELLATE DIVISION
        This opinion shall not "constitute precedent or be binding upon any court." Although it is posted on the
     internet, this opinion is binding only on the parties in the case and its use in other cases is limited. R. 1:36-3.




                                                         SUPERIOR COURT OF NEW JERSEY
                                                         APPELLATE DIVISION
                                                         DOCKET NOS. A-2298-17T4
                                                                     A-2344-17T2

M.M. and S.O.,1

          Appellants,

v.

CATASTROPHIC ILLNESS IN
CHILDREN RELIEF FUND
COMMISSION,

     Respondent.
___________________________

A.O.,

          Appellant,

v.

CATASTROPHIC ILLNESS IN
CHILDREN RELIEF FUND
COMMISSION,

     Respondent.
__________________________

1
  We use initials and pseudonyms to preserve the children's privacy. The
matters are sealed. R. 1:38-11(b)(2).
            Submitted (A-2298-17) and Argued (A-2344-17)
            March 6, 2019 – Decided April 10, 2019

            Before Judges Koblitz, Currier and Mayer.

            On appeal from the New Jersey Catastrophic Illness in
            Children Relief Fund Commission.

            M.M. and S.O., appellants pro se in A-2298-17.

            A.O., appellant, argued the cause pro se in A-2344-17.

            Gurbir S. Grewal, Attorney General, attorney for
            respondent in A-2298-17 (Melissa H. Raksa, Assistant
            Attorney General, of counsel; Marie L. Soueid, Deputy
            Attorney General, on the brief).

            Marie L. Soueid, Deputy Attorney General, argued the
            cause for respondent in A-2344-17 (Gurbir S. Grewal,
            Attorney General, attorney; Melissa H. Raksa,
            Assistant Attorney General, of counsel; Marie L.
            Soueid, on the briefs).

PER CURIAM

      We consolidate these appeals for the purpose of writing one opinion and

remand for an explanation of why defendant, the Catastrophic Illness in Children

Relief Fund Commission, (the Commission or CICRF), N.J.S.A. 26:2-148 to -

159, reimbursed the parents for their uncovered medical expenses incurred by

their children's hyperbaric oxygen therapy (HBOT) in 2015 but not in 2016.




                                                                        A-2298-17T4
                                       2
                                    I. Peter

      After A.O. and his wife's four-year-old son Peter was bit by a deer tick,

they took him to numerous doctors, who suggested the family "wait and see" if

the traditional Lyme disease symptoms manifested, but none did. His father

states that a year later, Peter "developed full blown psychosis," "suffered from

inappropriate laughter, motor tics, anxiety, separation anxiety, intrusive

thoughts, disorientation, weight loss, low muscle tone, weakness, body pains

and stiffness, poor eye contact, impulsivity, rages, loss of remorse, loss of

emotional warmth, loss of ability to read and do math and decline in gross motor

skills." He also lost the ability to eat, to speak, all "cogitative and academic

abilities," and control of his bowel and bladder. As a result, Peter was unable

to attend school. Prior to this unexplainable behavior, Peter was "fluent in two

languages while in kindergarten," mathematically talented, and a very

"easygoing social individual."

      Every doctor who examined Peter dismissed Lyme disease as the culprit,

resulting in over four years of misdiagnosis and mistreatment. In 2013, when

Peter was eight years old, Dr. Charles Ray Jones diagnosed Peter with Lyme

disease with infection-induced autoimmune encephalopathy and began the

traditional treatment for Lyme disease with oral antibiotics and intravenous


                                                                        A-2298-17T4
                                       3
immunoglobulin (IVIG).2       His progress was "slow but steady" until he

"plateau[ed]" in February 2015.      Dr. Jones then prescribed HBOT, which

drastically improved Peter's abilities.       Dr. Jones reported that Peter "became

more social, . . . talk[ed] in sentences," and was "able to play simple games with

his parents." HBOT improved his focus, ended his "episodes of destructive

rages," treated his anxiety, and helped him regain bowel and bladder control.

Additionally, the treatment allowed Peter to attend school for two hours a day.

Dr. Jones explained Peter's life depends on continued treatment with HBOT.

      On December 7, 2016, the Commission reviewed this information, found

A.O. eligible for reimbursement, and authorized the distribution of $33,296.50

for Peter's uncovered medical expenses from January 1 to December 31, 2015,

including HBOT treatment.

      In January 2017, A.O. again sought reimbursement for approximately

$30,000 of Peter's uncovered medical bills from January 1 to December 31,

2016. Although Peter was "eligible" for reimbursement, "[t]he Commission

voted to remove . . . HBOT from eligible expenses." The award was adjusted to




2
  IVIG is a blood product used to treat antibody deficiencies. Clinical uses of
intravenous immunoglobulin, U.S. Nat'l Library of Medicine (Apr. 14 2005),
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1809480/.
                                                                            A-2298-17T4
                                          4
reflect this exclusion, and A.O. was awarded $13,110.77. The Commission

affirmed this decision in a December 6, 2017 letter.

                                    II. Susan

      M.M. and S.O.' s youngest daughter, Susan, suffered severe brain injuries

during her birth in 2010. Her diagnosis is hypoxic ischemic encephalopathy.

Her parents describe Susan as being "a quad cerebral palsy" with "medication

resistant seizures, visual impairments, respiratory insufficiencies, digestive

problems, auditory impairments and many developmental delays." Susan was

prescribed HBOT and stem cell treatments by Dr. Lowe and, according to her

parents, has had "remarkable results." After receiving both treatments, Susan

can "'army crawl,' . . . see, understand, make some meaningful sounds and only

has [a] handful . . . of myoclonic seizures per month."

      In 2016, the CICRF reimbursed Susan's parents approximately $50,000 in

expenses incurred in 2015 for HBOT and other treatment. In 2017, her parents

applied for further unreimbursed expenses for 2016 HBOT treatment and, for

the first time, stem cell treatment. Both 2016 requests were denied. Susan's

parents were reimbursed only $15,849 in connection with Susan's other medical

treatment for 2016. The Commission affirmed this decision in a December 11,

2017 letter.


                                                                       A-2298-17T4
                                        5
                                  III. Analysis

      The scope of appellate review of an administrative decision is

limited. Lewis v. Catastrophic Illness in Children Relief Fund Comm'n, 336

N.J. Super. 361, 369 (App. Div. 2001). In reviewing a final agency decision,

the Appellate Division must defer to an agency's expertise and superior

knowledge of its field. Dep't of Children & Families, Div. of Youth & Family

Servs. v. T.B., 207 N.J. 294, 301 (2011); see also Campbell v. N.J. Racing

Comm'n, 169 N.J. 579, 588 (2001) (granting deference to agency expertise on

technical matters). This court "may not second-guess those judgments of an

administrative agency which fall squarely within the agency's expertise." In re

Stream Encroachment Permit, Permit No. 0200-04-0002.1 FHA, 402 N.J. Super.

587, 597 (App. Div. 2008).

      "In order to reverse an agency's judgment, an appellate court must find the

agency's decision to be 'arbitrary, capricious, or unreasonable, or . . . not

supported by substantial credible evidence in the record as a whole.'" In re

Stallworth, 208 N.J. 182, 194 (2011) (quoting Henry v. Rahway State Prison, 81

N.J. 571, 580 (1980)). "[A]lthough the scope of review of an agency's decision

is circumscribed, an appellate court's review of an agency decision is 'not simply

a pro forma exercise in which [the court] rubber stamp[s] findings that are not


                                                                          A-2298-17T4
                                        6
reasonably supported by the evidence.'" Mejia v. N.J. Dep't of Corr., 446 N.J.

Super. 369, 376-77 (App. Div. 2016) (alterations in original) (quoting In re

Taylor, 158 N.J. 644, 657 (1999)).

      Reasons must be set forth so that we can review whether the actions were

arbitrary or capricious. In re Issuance of Permit by Dep't of Envtl. Prot., 120

N.J. 164, 172-73 (1990); see Bailey v. Bd. of Review, 339 N.J. Super. 29, 33

(App. Div. 2001) (stating we should not defer to an administrative determination

unless we have "confidence that there has been a careful consideration of the

facts in issue and appropriate findings addressing the critical issues in dispute").

"[W]e insist that the agency disclose its reasons for any decision, even those

based upon expertise, so that a proper, searching, and careful review by this

court may be undertaken." Balagun v. N.J. Dep't of Corr., 361 N.J. Super. 199,

203 (App. Div. 2003).

      In 1987, the Legislature found "children have the highest average medical

costs among the population as a whole," and as a result, some families are

"push[ed] . . . into bankruptcy and others towards seeking inferior medical care."

N.J.S.A. 26:2-148(c), (b). In response, the Legislature enacted the Catastrophic

Illness in Children Relief Fund Act (the Act), which created a non-lapsing,

revolving fund earmarked "to provide assistance to children and their families


                                                                            A-2298-17T4
                                         7
whose medical expenses [related to a catastrophic illness] extend beyond the

families' available resources." N.J.S.A. 26:2-148(e); N.J.S.A. 26:2-151.

        Under the Act, a "catastrophic illness" is defined as "any illness or

condition the medical expenses of which are not covered by any other State or

federal program or any insurance contract and exceed 10% of the first $100,000

of annual income of a family plus 15% of the excess income over $100,000."

N.J.S.A. 26:2-149(a).    "The moneys necessary to establish and meet the

purposes of the [Act] are generated by a one dollar annual surcharge per

employee for all employers who are subject to the New Jersey Unemployment

Compensation Law." Lewis, 336 N.J. Super. at 365-66 (citing N.J.S.A. 26:2-

157).

        The Act statutorily creates the Commission to effectuate its purpose.

N.J.S.A. 26:2-151. The Commission is composed of the Commissioner of

Health, the Commissioner of Human Services, the Commissioner of Children

and Families, the Commissioner of Banking and Insurance, the State Treasurer,

and seven New Jersey residents, two of which must be "provider[s] of health

care services to children." N.J.S.A. 26:2-151. The Commission is tasked with

administering the fund by establishing procedures to apply for reimbursement,




                                                                       A-2298-17T4
                                       8
determining eligibility, calculating the reimbursement amount, and p rocessing

the fund awards. N.J.S.A. 26:2-154(a) to (c).

      A family seeking reimbursement must apply each year, listing costs

already incurred from the prior twelve-month time period. N.J.A.C. 10:155-1.4;

N.J.A.C. 10:155-1.5(d); N.J.A.C. 10:155-1.13; N.J.A.C. 10:155-1.12(a)(2)

(mandating the Commission must meet and determine eligibility). Even after

the Commission deems a recipient "eligible, . . . disbursements on behalf of a

child shall be limited by the monies available," giving the Commission

discretion on whether to approve the award requested. N.J.A.C. 10:155-1.3(b);

N.J.A.C. 10:155-1.7 (establishing caps per child). Further, the award is subject

to the rules and regulations adopted by the Commission. N.J.S.A. 26:2-154(i);

N.J.S.A. 26:2-156.

      N.J.A.C. 10:155-1.14 provides a non-exhaustive list of eligible health

services which the Commission may fund. N.J.A.C. 10:155-1.14(a)(14) allows

reimbursement for "[e]xperimental medical treatment/experimental drugs in

connection with an FDA [3]-approved clinical trial, which are provided by


3
   The federal Food and Drug Administration (FDA) is tasked with regulating
clinical trials of drugs and medical devices "in human volunteers to see whether
they should be approved for wider use in the general population." Conducting
Clinical Trials, U.S. Food and Drug Administration (last updated June 15, 2016),


                                                                        A-2298-17T4
                                       9
licensed health care providers." The regulation further notes applications for

these treatments "may require additional review." N.J.A.C. 10:155-1.14(a)(14).

      The FDA has not approved stem cell treatment for hypoxic ischemic

encephalopathy-induced cerebral palsy.      See FDA Warns About Stem Cell

Therapies, U.S. Food and Drug Administration (last updated Nov. 16, 2017),

https://www.fda.gov/forconsumers/consumerupdates/ucm286155.htm. Nor has

Susan been accepted into a stem cell clinical trial.        Because the current

application for reimbursement for stem cell treatment is the first request and was

denied pursuant to the regulations, we affirm the denial of reimbursement for

out-of-pocket expenses in connection with Susan's stem cell treatment.

      The children's unreimbursed HBOT treatment expenses were approved for

2015 and thus are in a different category. HBOT has not been approved by the

FDA as a treatment for cerebral palsy or Lyme disease. Hyperbaric Oxygen

Therapy: Don't Be Misled, U.S. Food and Drug Administration (Aug. 22, 2013),

https://www.fda.gov/ForConsumers/ConsumerUpdates/ucm364687.htm.

Neither Peter nor Susan's HBOT treatments were part of a clinical trial. The

Commission argues it was within its wide discretion to deny 2016 HBOT costs




https://www.fda.gov/drugs/developmentapprovalprocess/conductingclinicaltria
ls/default.htm.
                                                                          A-2298-17T4
                                       10
because it is not on the non-exhaustive list of eligible health services in N.J.A.C.

10:155-14(a)(14). The Commission offers no explanation, however, as to why

the children's HBOT treatment was covered in 2015, but not in 2016.

      The essence of arbitrariness is where the same set of facts results in one

decision on one occasion and a contrary decision on another occasion. Black's

Law Dictionary defines "arbitrary" as "[d]epending on individual discretion; of,

relating to, or involving a determination made without consideration of or regard

for facts, circumstances, fixed rules, or procedures." Black's Law Dictionary

(10th ed. 2014); Definition of arbitrary, Merriam-Webster (last visited Mar. 26

2019), https://www.merriam-webster.com/dictionary/arbitrary ("existing or

coming about seemingly at random or by chance or as a capricious and

unreasonable act of will"). The same regulations were in effect in 2015 and

2016. Why unreimbursed HBOT expenses were covered for these two families

in 2015 and not in 2016 must be explained. We remand for the Commission to

set forth its reasons for the change in reimbursement. We affirm the denial of

reimbursement for Susan's stem cell therapy.

      Affirmed in part and reversed and remanded in part. We do not retain

jurisdiction.




                                                                            A-2298-17T4
                                        11
