Sen. Don Harmon

Filed: 5/5/2016

 

 


 

 


 
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1
AMENDMENT TO SENATE BILL 345

2    AMENDMENT NO. ______. Amend Senate Bill 345 by replacing
3everything after the enacting clause with the following:
 
4    "Section 1. Short title. This Act may be cited as the
5Autism and Co-Occurring Medical Conditions Awareness Act.
 
6    Section 5. Findings. The General Assembly finds the
7following:
8        (1) The medical consensus is that autism is an
9    idiopathic disorder that has complex and multiple
10    etiologies. The development of autism appears to be a
11    complex interaction of multiple genetic and environmental
12    factors. Both the prevalence and incidence of autism has
13    risen in recent decades.
14        (2) The Centers for Disease Control estimates that one
15    in 68 children born in 2002 and one in 42 boys have been
16    identified as living with autism.

 

 

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1        (3) A 2012 survey conducted by the Centers for Disease
2    Control of U.S. households estimated one in 50 children
3    ages 6 to 17 has an autism spectrum disorder.
4        (4) Autism spectrum disorders occur among all racial,
5    ethnic, and socioeconomic groups.
6        (5) Autism spectrum disorders are almost 5 times more
7    common among boys than among girls.
8        (6) According to the Centers for Disease Control,
9    autism rates increased 78% between 2002 and 2008. The most
10    recent estimate is roughly 30% higher than the estimate for
11    2008 (one in 88), 60% higher than the estimate for 2006
12    (one in 110), and 120% higher than the estimates for 2000
13    and 2002 (one in 150).
14        (7) While autism spectrum disorders have primarily
15    been diagnosed in measuring deficits in the areas of
16    communication, socialization, and behavior, recent
17    clinical and scientific investigations have determined
18    that co-occurring pathophysiological conditions may occur
19    more commonly in persons also diagnosed with autism. These
20    pathologies include, but are not limited to, allergies,
21    autoimmune conditions, gastrointestinal diseases, immune
22    dysregulation, metabolic disturbances, mitochondrial
23    abnormalities, oxidative stress, neuroinflammation, and
24    seizure disorders.
25        (8) Scientific inquiry is providing evidence of
26    biological markers, including, but not limited to, single

 

 

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1    nucleotide polymorphisms, indications of cellular
2    inflammation, increased cellular oxidation and damage, and
3    abnormal DNA methylation, that may be clinically
4    significant in the provision of appropriate medical care
5    for persons also diagnosed with an autism spectrum
6    disorder.
7    Therefore, it is the intention of the General Assembly to
8promote a greater awareness and the detection, diagnosis, and
9treatment of underlying and co-occurring medical conditions
10that occur more commonly in persons with autism to further
11awareness, scientific understanding, and health outcomes for
12persons living with autism.
 
13    Section 10. Definitions. In this Act:
14    "Autism spectrum disorder" means a neurobiological
15disorder, including autism, regressive autism, Asperger
16Syndrome, and pervasive developmental disorders not otherwise
17specified.
18    "Clinical symptomatology" means any indication of disorder
19or disease when experienced by an individual as a change from
20normal function, sensation, or appearance.
21    "Co-occurring or otherwise diagnosed medical condition"
22means a simultaneous illness, condition, injury, disease,
23pathology, or disability that is not primarily diagnosed as an
24autism spectrum disorder.
25    "Department" means the Department of Financial and

 

 

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1Professional Regulation.
2    "Pathophysiological" means the functional alterations in
3the body related to a disease or syndrome.
4    "Provider" means any provider of healthcare services in
5this State.
 
6    Section 15. Study and education. Public partnerships and
7private partnerships supporting the discovery of biomarkers
8and their implications in pathophysiological conditions shall
9be encouraged and information derived from such discoveries
10shall be disseminated to providers and made available to the
11general public through research initiatives that may be
12promoted by universities, medical clinics, health care
13providers, consortiums, State agencies, private organizations,
14public organizations, and any party that may contribute to the
15scientific understanding of medical conditions associated or
16occurring more often in persons also diagnosed with an autism
17spectrum disorder than in the general population.
18    Universities, private organizations, public organizations,
19and associations are encouraged to develop for providers who
20treat persons with autism spectrum disorders continuing
21education courses which address training in evaluation,
22diagnosis, and treatments for co-occurring and otherwise
23diagnosed pathophysiological conditions in autism spectrum
24disorders to promote and align standard of care practices to
25reflect emerging clinical findings and promising practices

 

 

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1derived from improved patient outcomes.
 
2    Section 20. Treatment or service of persons with an autism
3spectrum disorder. Providers are strongly encouraged to
4evaluate persons diagnosed with an autism spectrum disorder for
5co-occurring or otherwise diagnosed medical conditions when
6clinical symptomatology is present or suspected and prescribe
7appropriate treatments or services in alignment with care
8practices for the condition, illness, injury, disease, or
9disability. Providers may consider, without limitation,
10whether or not a medication or any ingredient, allergen,
11potential toxicant, or artificial agent may exacerbate
12clinical symptomatology of autism spectrum disorder or a
13related or co-occurring or otherwise diagnosed medical
14condition and, if so, may consider adopting measures that would
15result in the reduction or elimination of risk to the patient.
 
16    Section 25. Complaints. Any person with an autism spectrum
17disorder, or the person's parent or legal guardian on his or
18her behalf, who believes they have not received an appropriate
19medical assessment, evaluation, diagnosis, service or
20treatment from a provider because he or she is also diagnosed
21with an autism spectrum disorder may report the incident to the
22Department.
 
23    Section 30. Right to seek new care. A person with an autism

 

 

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1spectrum disorder, or the person's parent or legal guardian on
2his or her behalf, retains the right to seek further medical
3opinions or care from other providers.
4    A parent or legal guardian shall not be threatened with
5loss of parental or legal guardianship rights for a person with
6autism spectrum disorder for pursuing additional medical
7expertise, especially in the case of trying to ascertain
8appropriate identification and diagnosis of underlying or
9co-occurring medical conditions that may or may not be
10exacerbating symptoms primarily associated with an autism
11spectrum disorder. This Section does not abrogate or restrict
12any responsibilities set forth under the Abused and Neglected
13Child Reporting Act.
14    Any person diagnosed as having an autism spectrum disorder
15or his or her parent or legal guardian shall not be denied the
16right to pursue appropriate and available medical
17interventions or treatments that may help to ameliorate or
18improve the symptoms primarily associated with an autism
19spectrum disorder or co-occurring or otherwise diagnosed
20medical condition.
21    Any person diagnosed as having an autism spectrum disorder
22or his or her parent or legal guardian shall not be denied the
23right to decline a medical treatment or intervention.
 
24    Section 35. Repeal. In order to consider the most
25innovative medical study and research involving autism and

 

 

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1co-occurring medical conditions, this Act is repealed 5 year
2after the effective date of this Act of the 99th General
3Assembly.
 
4    Section 90. The Illinois Insurance Code is amended by
5changing Section 356z.14 and by adding Section 356z.24 as
6follows:
 
7    (215 ILCS 5/356z.14)
8    Sec. 356z.14. Autism spectrum disorders.
9    (a) A group or individual policy of accident and health
10insurance or managed care plan amended, delivered, issued, or
11renewed after the effective date of this amendatory Act of the
1295th General Assembly must provide individuals under 21 years
13of age coverage for the diagnosis of autism spectrum disorders
14and for the treatment of autism spectrum disorders to the
15extent that the diagnosis and treatment of autism spectrum
16disorders are not already covered by the policy of accident and
17health insurance or managed care plan.
18    (b) Coverage provided under this Section shall be subject
19to a maximum benefit of $36,000 per year, but shall not be
20subject to any limits on the number of visits to a service
21provider. After December 30, 2009, the Director of the Division
22of Insurance shall, on an annual basis, adjust the maximum
23benefit for inflation using the Medical Care Component of the
24United States Department of Labor Consumer Price Index for All

 

 

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1Urban Consumers. Payments made by an insurer on behalf of a
2covered individual for any care, treatment, intervention,
3service, or item, the provision of which was for the treatment
4of a health condition not diagnosed as an autism spectrum
5disorder, shall not be applied toward any maximum benefit
6established under this subsection.
7    (c) Coverage under this Section shall be subject to
8copayment, deductible, and coinsurance provisions of a policy
9of accident and health insurance or managed care plan to the
10extent that other medical services covered by the policy of
11accident and health insurance or managed care plan are subject
12to these provisions.
13    (d) This Section shall not be construed as limiting
14benefits that are otherwise available to an individual under a
15policy of accident and health insurance or managed care plan
16and benefits provided under this Section may not be subject to
17dollar limits, deductibles, copayments, or coinsurance
18provisions that are less favorable to the insured than the
19dollar limits, deductibles, or coinsurance provisions that
20apply to physical illness generally.
21    (e) An insurer may not deny or refuse to provide otherwise
22covered services, or refuse to renew, refuse to reissue, or
23otherwise terminate or restrict coverage under an individual
24contract to provide services to an individual because the
25individual or their dependent is diagnosed with an autism
26spectrum disorder or due to the individual utilizing benefits

 

 

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1in this Section.
2    (f) Upon request of the reimbursing insurer, a provider of
3treatment for autism spectrum disorders shall furnish medical
4records, clinical notes, or other necessary data that
5substantiate that initial or continued medical treatment is
6medically necessary and is resulting in improved clinical
7status. When treatment is anticipated to require continued
8services to achieve demonstrable progress, the insurer may
9request a treatment plan consisting of diagnosis, proposed
10treatment by type, frequency, anticipated duration of
11treatment, the anticipated outcomes stated as goals, and the
12frequency by which the treatment plan will be updated.
13    (g) When making a determination of medical necessity for a
14treatment modality for autism spectrum disorders, an insurer
15must make the determination in a manner that is consistent with
16the manner used to make that determination with respect to
17other diseases or illnesses covered under the policy, including
18an appeals process. During the appeals process, any challenge
19to medical necessity must be viewed as reasonable only if the
20review includes a physician with expertise in the most current
21and effective treatment modalities for autism spectrum
22disorders.
23    (h) Coverage for medically necessary early intervention
24services must be delivered by certified early intervention
25specialists, as defined in 89 Ill. Admin. Code 500 and any
26subsequent amendments thereto.

 

 

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1    (h-5) If an individual has been diagnosed as having an
2autism spectrum disorder, meeting the diagnostic criteria in
3place at the time of diagnosis, and treatment is determined
4medically necessary, then that individual shall remain
5eligible for coverage under this Section even if subsequent
6changes to the diagnostic criteria are adopted by the American
7Psychiatric Association. If no changes to the diagnostic
8criteria are adopted after April 1, 2012, and before December
931, 2014, then this subsection (h-5) shall be of no further
10force and effect.
11    (h-10) An insurer may not require, as a condition for
12coverage of other covered services, that an individual
13diagnosed with an autism spectrum disorder receive any
14medication or intervention that has been determined by the
15individual's health care provider to be medically
16contraindicated for the individual. An insurer may not deny or
17refuse to provide covered services, or refuse to renew, refuse
18to reissue, or otherwise terminate or restrict coverage under
19an individual contract, for a person diagnosed with an autism
20spectrum disorder on the basis that the individual declined an
21alternative medication or covered service when the
22individual's health care provider determined that such
23medication or covered service may exacerbate clinical
24symptomatology and is medically contraindicated for the
25individual. For the purposes of this subsection (h-10),
26"clinical symptomatology" means any indication of disorder or

 

 

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1disease when experienced by an individual as a change from
2normal function, sensation, or appearance.
3    (h-15) If, at any time, the Secretary of the United States
4Department of Health and Human Services, or its successor
5agency, promulgates rules or regulations to be published in the
6Federal Register or publishes a comment in the Federal Register
7or issues an opinion, guidance, or other action that would
8require the State, pursuant to any provision of the Patient
9Protection and Affordable Care Act (Public Law 111–148),
10including, but not limited to, 42 U.S.C. 18031(d)(3)(B) or any
11successor provision, to defray the cost of any coverage
12outlined in subsection (h-10), then subsection (h-10) is
13inoperative with respect to all coverage outlined in subsection
14(h-10) other than that authorized under Section 1902 of the
15Social Security Act, 42 U.S.C. 1396a, and the State shall not
16assume any obligation for the cost of the coverage set forth in
17subsection (h-10).
18    (i) As used in this Section:
19    "Autism spectrum disorders" means pervasive developmental
20disorders as defined in the most recent edition of the
21Diagnostic and Statistical Manual of Mental Disorders,
22including autism, Asperger's disorder, and pervasive
23developmental disorder not otherwise specified.
24    "Diagnosis of autism spectrum disorders" means one or more
25tests, evaluations, or assessments to diagnose whether an
26individual has autism spectrum disorder that is prescribed,

 

 

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1performed, or ordered by (A) a physician licensed to practice
2medicine in all its branches or (B) a licensed clinical
3psychologist with expertise in diagnosing autism spectrum
4disorders.
5    "Medically necessary" means any care, treatment,
6intervention, service or item which will or is reasonably
7expected to do any of the following: (i) prevent the onset of
8an illness, condition, injury, disease or disability; (ii)
9reduce or ameliorate the physical, mental or developmental
10effects of an illness, condition, injury, disease or
11disability; or (iii) assist to achieve or maintain maximum
12functional activity in performing daily activities.
13    "Treatment for autism spectrum disorders" shall include
14the following care prescribed, provided, or ordered for an
15individual diagnosed with an autism spectrum disorder by (A) a
16physician licensed to practice medicine in all its branches or
17(B) a certified, registered, or licensed health care
18professional with expertise in treating effects of autism
19spectrum disorders when the care is determined to be medically
20necessary and ordered by a physician licensed to practice
21medicine in all its branches:
22        (1) Psychiatric care, meaning direct, consultative, or
23    diagnostic services provided by a licensed psychiatrist.
24        (2) Psychological care, meaning direct or consultative
25    services provided by a licensed psychologist.
26        (3) Habilitative or rehabilitative care, meaning

 

 

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1    professional, counseling, and guidance services and
2    treatment programs, including applied behavior analysis,
3    that are intended to develop, maintain, and restore the
4    functioning of an individual. As used in this subsection
5    (i), "applied behavior analysis" means the design,
6    implementation, and evaluation of environmental
7    modifications using behavioral stimuli and consequences to
8    produce socially significant improvement in human
9    behavior, including the use of direct observation,
10    measurement, and functional analysis of the relations
11    between environment and behavior.
12        (4) Therapeutic care, including behavioral, speech,
13    occupational, and physical therapies that provide
14    treatment in the following areas: (i) self care and
15    feeding, (ii) pragmatic, receptive, and expressive
16    language, (iii) cognitive functioning, (iv) applied
17    behavior analysis, intervention, and modification, (v)
18    motor planning, and (vi) sensory processing.
19    (j) Rulemaking authority to implement this amendatory Act
20of the 95th General Assembly, if any, is conditioned on the
21rules being adopted in accordance with all provisions of the
22Illinois Administrative Procedure Act and all rules and
23procedures of the Joint Committee on Administrative Rules; any
24purported rule not so adopted, for whatever reason, is
25unauthorized.
26(Source: P.A. 96-1000, eff. 7-2-10; 97-972, eff. 1-1-13.)
 

 

 

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1    (215 ILCS 5/356z.24 new)
2    Sec. 356z.24. Immune gamma globulin therapy.
3    (a) Patients with primary immunodeficiency are susceptible
4to the ravages of infection because they have impaired antibody
5response and quality. Immune gamma globulin therapy is intended
6for continuous replacement therapy for primary
7immunodeficiency and may be delivered through intravenous
8immunoglobulin or subcutaneous immunoglobulin. For patients
9with a primary immunodeficiency, immune gamma globulin therapy
10protects against life-threatening infections, reduces
11hospitalizations, preserves organ function, increases life
12span, and is lifesaving. Immune gamma globulin is a human
13plasma product regulated by the United States Food and Drug
14Administration and approved for the treatment of primary
15immunodeficiency. No generic immune gamma globulin product
16exists. Patients diagnosed with primary immunodeficiency may
17have varying clinical responses to a prescribed drug, including
18those that may qualify as a serious medical contraindication.
19Infusions should not be interrupted to learn about a patient's
20tolerance for frequency of infusion as this will put the
21patient's life at risk and to do so would be consistent with
22medical malpractice. Some patients with primary
23immunodeficiency have normal levels of immunoglobulins at
24diagnosis but cannot make the antibodies that will neutralize
25infection. In these cases, trough dosing is not clinically

 

 

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1appropriate.
2    (b) A group or individual policy of accident and health
3insurance or managed care plan amended, delivered, issued, or
4renewed after the effective date of this amendatory Act of the
599th General Assembly may not allow for the delay,
6discontinuation, or interruption of immune gamma globulin
7therapy for persons who are diagnosed with a primary
8immunodeficiency when prescribed immune gamma globulin therapy
9by a physician licensed to practice medicine in all of its
10branches. Administration of immune gamma globulin therapy
11shall not be delayed or interrupted by an insurer once a
12diagnosis is established and immune gamma globulin is
13prescribed. For the purposes of this Section, delay,
14interruption, or discontinuation of therapy means interfering
15with treatment as prescribed by the licensed physician by
16altering the prescribed dose, frequency, route, venue,
17product, or administration, which is determined by the
18physician based on patient tolerability, individual patient
19characteristics, needs, and clinical response. Product
20interchangeability not authorized by a prescribing physician
21is prohibited.
22    (c) Upon the diagnosis of primary immunodeficiency by the
23prescribing physician, authorization or reauthorization by
24insurers of immune gamma globulin therapy shall be expedited by
25insurers. Due to the potential lifesaving necessity of immune
26gamma globulin, determination of authorization or

 

 

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1reauthorization may not take more than 2 weeks and
2reauthorization may not be required more frequently than every
312 months unless a more frequent duration has been indicated by
4the prescribing physician. Since immune gamma globulin therapy
5is intended for continuous replacement of antibodies, once a
6diagnosis of primary immunodeficiency is made, the previous
7diagnosis and current clinical judgment of the prescribing
8physician shall be sufficient for renewed authorization or
9authorization for continuation of care if the patient requires
10new authorization due to change in insurers.
11    (d) Review of a patient's clinical history for meaningful
12infections and the available laboratory findings, genetic
13findings, and imaging studies, along with physical evidence of
14end-organ damage from recurrent infections and the favorable
15effect of immune gamma globulin replacement on clinical course
16and the treating physician's clinical judgment is sufficient to
17validate an antibody deficiency diagnosis. Trough levels of
18antibodies and normal immune globulin levels may be used by
19clinicians to monitor treatment and shall not be used to
20discontinue or otherwise deny coverage of immune gamma globulin
21therapy for a patient determined by a physician to have a
22primary immunodeficiency.
23    (e) Any standards, policies, provisions, or practices by
24insurers that require a person who is diagnosed with a primary
25immunodeficiency to delay, discontinue, or interrupt immune
26gamma globulin therapy that could result in a potentially life

 

 

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1threatening situation are prohibited when prescribed by a
2physician licensed to practice medicine in all its branches.
3    (f) If, at any time, the Secretary of the United States
4Department of Health and Human Services, or its successor
5agency, promulgates rules or regulations to be published in the
6Federal Register or publishes a comment in the Federal Register
7or issues an opinion, guidance, or other action that would
8require the State, pursuant to any provision of the Patient
9Protection and Affordable Care Act (Public Law 111–148),
10including, but not limited to, 42 U.S.C. 18031(d)(3)(B) or any
11successor provision, to defray the cost of any coverage
12outlined in subsections (b) and (c), then subsections (b) and
13(c) are inoperative with respect to all coverage outlined in
14subsections (b) and (c) other than that authorized under
15Section 1902 of the Social Security Act, 42 U.S.C. 1396a, and
16the State shall not assume any obligation for the cost of the
17coverage set forth in subsections (b) and (c).
 
18    Section 99. Effective date. This Act takes effect upon
19becoming law.".