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Minutes for HB2110 - Committee on Insurance and Pensions

Short Title

Requiring insurance coverage for PANS and PANDAS by the state health care benefits program and requiring the state employee health care commission to submit an impact report on such coverage to the legislature.

Minutes Content for Wed, Feb 10, 2021

The Chairperson opened the hearing on HB2110 and asked David Wiese, Assistant Revisor, Office of the Revisor of Statutes, to provide an overview of the bill. (Attachment 1)

The Chairperson asked Melissa Renick, Assistant Director for Research, Kansas Legislative Research Department, to provide an overview of the fiscal note.

Dr. John Eplee, M.D., Family Physician and State Legislator representing District 63 testified in support of the bill.  Dr.Eplee explained that these diagnoses were not known or certainly not understood even 15 years ago in medicine.  He went on to say that they understand much more about these diagnoses than ever before and the wide array of treatments - some of which are quite expensive.  He described the symptoms that can easily be misdiagnosed as autism or mental illness.  Dr. Eplee described the history of this bill, originating in the House Health and Human Services Committee last year, and after an interim study, it was referred to this Committee.  What the bill asks for is test tract in the State Health Employee Program or other defined populations to evaluate the cost impact going forward.  Dr. Eplee responded to Committee questions.  (Attachment 2)

Dr. Roger Kobayashi, M.D., Associate Professor with UCLA School of Medicine testified in support of the bill.  For the sake of time constraints, he chose to forgo his power-point presentation and tried to summarize the information included in those slides.  Dr. Kobayashi described the illness to have a sudden onset with dramatic changes in behavior.  He indicated that PANS/PANDA patients are often misdiagnosed as mental illness of some sort or on the autism spectrum.  According to Dr. Koabyashi, the disease is caused by the inflammation of basal ganglion in the brain.  He described a variety of ways that PANS/PANDAS can be treated, and highlighted IVIG treatment as a highly effective but expensive treatment.  The Doctor said that if services are not covered by insurance, the non-negotiated maximum price is charged to the patient, which can be substantial.  (Attachment 3) (Attachment 4) (Attachment 5) (Attachment 6) (Attachment 7)

Dr. Tara Richardson, M.D., testified in support of the bill.  She began her testimony by explaining that some of the symptoms of PANS/PANDAS can look like anorexia or extreme fear of germs from food.  She stated that it is often misdiagnosed; that the symptoms can come and go.  Dr. Richardson stressed that timely diagnosis and appropriate treatment is critical.  She indicated that 1 in 200 children get PANS/PANDAS and that the average age of diagnosis is 3-13 years.  She stated that symptoms can continue into adulthood and adult-onset can happen. She went on to describe her daughter's diagnosis at age 5, and subsequent recovery, thanks to IVIG treatment.  She concluded by stating that PANS patients can benefit from a 6-cycle course of IVIG. (Attachment 8) (Attachment 9) (Attachment 10)

Shannon Wright, Masters level social worker licensed in the State of Kansas, testified in support of the bill.  She is also a parent of a recovered PANS patient.  She described her daughter's illness and how devastating the illness is for children, but also for the family, school systems and the community.  Ms. Wright credits her daughter's recovery to their ability to access IVIG as part of her treatment.  She went on to say that antibiotics, steroids, ibuprofen and a variety of psychiatric medications are already generally covered by insurance.  IVIG is the most expensive (and in her experience, the treatment that made the most impact) and is routinely denied by insurance.  She thanked the Committee for their time and consideration of HB2110. (Attachment 11)

Brad Smoot, speaking on behalf of Blue Cross Blue Shield of Kansas (BCBSKS), testified neutral to the bill.  He said that they were pleased to see that the bill would require the State Employees Health Plan (SEHP) to conduct a pilot project on an expanded PANS AND PANDAS benefit for one year and file a report with the legislature on March 1, 2023.  Mr. Smoot went on to say that unfortunately, the bill does not provide an impact report, assessing the social and fiscal effect of the new mandate.  He stated that  BCBSKS already covers numerous treatments for PANS/PANDAS and that additionally, they also cover IVIG as a therapy for several medical conditions, but BCBSKS and many other insurers consider IVIG to be experimental as a treatment for PANS/PANDAS.  Mr. Smoot concluded that BCBSKS appears neutral on this bill and they will be interested to see the fiscal note for the SEHP's one year pilot project and will await the required report and further medical and scientific research on these diseases and treatments.  Mr. Smoot responded to Committee questions.  (Attachment 12)

The various speakers responded to Committee questions.

After asking if there were any other conferees and seeing none, Chairperson Johnson closed the hearing on HB2110.