Health and Human Services Interim Committee

Utah, with a requirement for $5.7 million annually in State matching funds; and provides health insurance coverage for children under 19 years of age who fall between 100 and 200 percent of the poverty level. He said most of the services are specified in the federal legislation and must be keyed to three benchmark plans including: the Blue Cross Blue Shield Federal Employees Program, the most popular HMO program in the state; or the state public employees health plan. He said Utah's program will be a stand alone insurance program rather than a Medicaid expansion. The HPC has recommended that the Department of Health be designated as the State oversight agency and do determination of eligibility for the program. April 1998 is targeted as the start up date. He noted that the HPC has received substantial public input and is holding public hearings beginning October 28, 1997.

    Mr. Mayeda reviewed draft legislation, Utah's Children's Health Insurance Act presented to the HPC by the Department of Health . This legislation amends the Medicaid restricted account to allow the Legislature to appropriate monies from this account to fund this program; creates the Utah Children's Health Insurance Program; describes the basic structure of the program; sets forth the duties of the Department of Health; creates an Advisory Council; and appropriates monies for the program. Mr. Mayeda also highlighted the eligibility requirements, program benefits, and language from the federal legislation. Sen. Suazo requested information regarding the number of children this program will serve. Mr. Johnson said there are currently 65,000 uninsured children in Utah and approximately 30,000 children will be eligible for this program. He projects that 15,000 children will be enrolled in Medicaid as a result of this program. Approximately 20,000 children will remain uninsured after program is in place. He noted that these remaining uninsured and the under insured children in the state are challenges that need to be addressed. Rep. Davis asked about the marketing plan to inform the public. Mr. Johnson said there is not a plan in place; however, the HPC is committed to using an aggressive approach to reach eligible children.

    Children With Congenital Metabolic Disorders. Rep. Beck introduced draft legislation, Insurance Coverage For Metabolic Disease, and said that it closes a loophole in insurance coverage. This bill requires an insurance policy to cover medically formulated foods and medical formula used under the direction of a physician for the treatment of inborn errors of amino acid or urea cycle metabolism to the same extent as prescription drugs and subject to the same co-payment, deductible, and out-of-pocket limit.
    
    Rep. Beck introduced Dr. Clair Leonard, Geneticist, University of Utah; Sharon Ernst, Dietician, Medical Genetics Program; and Kurt Mortensen, parent of a child born with Phenylketonuria (PKU) who made presentations regarding PKU. She also recognized those in the audience with family members born with PKU. Dr. Leonard explained that PKU is an inborn error of metabolism in which a person is unable to process the chemical phenylalanine. If untreated, PKU results in delayed developmental milestones, severe to profound mental retardation, hyperactivity and other behavioral problems, decreased skin pigment and eczema, a

musty odor, and seizures and other neurological problems. She said the goal of treatment for PKU is to maintain the blood phenylalanine levels within a recommended range while providing patients with adequate nutrients and energy to support their growth and intellectual development.
With sustained treatment, these children will be healthy and normal.

    Ms. Ernst provided information regarding the medical management of PKU. The PKU Food Plan includes: (1) using phenylalanine -restricted medical foods in prescribed amounts (to provide a source of protein that does not contain phenylalanine); (2) eating measured amounts of food to provide the required amount of phenylalanine ; (3) avoiding high protein foods; and (4) using low protein and protein-free foods to meet calorie needs and provide variety. Ms. Ernst said the cost of food products for the PKU diet is 2 to 5 times the cost of normal foods.
    
    Mr. Mortensen related his experience as a parent of a child born with PKU. His son is now 9 years old. They were informed that with proper diet their son would be normal in every respect. Although they have insurance, they discovered the medical formula (which currently costs $3,000 for a six month supply) was not covered. He noted that the Department of Health has been providing the necessary funding to pay for the formula through age 18; however, there is no coverage for adults over 18. He said it makes no sense to spend thousands of dollars to treat children with PKU and then abandon them.

    Rep. Beck noted that it is much more costly to treat these individuals as disabled than to sustain a healthy life. She urged the committee to support this legislation. Chair Tanner asked what loophole this bill closes. Dr. Leonard identified the loophole as the labeling of the formula as "food" which is not covered by insurance. Sen. Suazo asked how many people in Utah have PKU. Dr. Leonard said there are probably 200. Rep. Dayton asked about extending the State's coverage to include those over age 18 instead of requiring insurance companies to provide the coverage. Rep. Beck said that those with diabetes can purchase coverage, but coverage is not available to those with PKU. Dr. Leonard said the problem with state coverage by the Department of Health is that the state can and does change its policy each year.

    Mr. John T. Nielson, Intermountain Health Care, said that the insurance industry has problems with mandated benefits and prefers this problem be handled within the industry. Mr. Roger Day, Utah Health Insurance Association, said it is not appropriate for the Legislature to mandate benefits for exempt plans according to the federal Employee Retirement Income Security Act of 1974. He said the equity issues should be handled in congress. He recommended this be handled by making a clearer distinction between "drugs" and "food." Chair Tanner requested a list of insurance providers that cover the formula and/or medical food.

    MOTION: Rep. Davis moved that the proposed legislation Insurance Coverage For Metabolic Disease be adopted as a committee bill. The motion passed with Chair Tanner and Reps. Dayton, Killpack, and Saunders voting in opposition.

3.    Adoption
    Rep. Stephens explained that the draft legislation Adoption Amendments expedites the adoption process and ensures that children achieve permanency on the first adoptive placement. This bill was requested by the Utah Adoption Council and is based on recommendations from the Committee on Ethical Standards in Adoption. The goal of this bill is to strengthen the pre- and post-placement evaluation process. Changes to statute made by this legislation include: (1) changes "study" to "evaluation"; (2) clarifies the provisions for voluntary relinquishment of parental rights under the termination of parental rights act; (3) limits the time period for temporary placement of a child while awaiting a pre-placement adoptive evaluation; (4) applies adoptive evaluations to other adults living in the prospective adoptive home; (5) provides that the court should determine who is otherwise qualified to conduct an evaluation; (6) requires the pre- placement evaluation to be filed within a specific period of time; and (7) amends the post- placement evaluation procedures.

    Mr. Tom Baxter, Utah Adoption Council, spoke in favor of this bill.

    The committee discussed language in the bill stating that a relinquishment for adoption "may not be revoked."

     MOTION: Rep. Saunders moved to pass out favorably Adoption Amendments. Sen. Peterson stated that she would vote in favor but may amend the bill in the future. The motion passed unanimously. Rep. Davis was absent for the vote.

4.    Mental Health
    Treatment of Mentally Ill Prisoners. Dr. Meredith Alden, Director, Division of Mental Health, Department of Human Services, explained that the Governor convened a task force to study the treatment of mentally ill prisoners. She reviewed for the committee the handout Treatment of Mentally Ill Prisoners which summarizes the recommendations of the task force. First, the task force recommended the use of involuntary medication when clinically indicated rather than physical restraints. However, there needs to be a due process protection for inmates. Second, there will be joint training for doctors in the prison system and in the state hospital. Third, the task force recommended the development of a mental health board to review policy issues. This board would provide external oversight. Fourth, the development of a bureau of community relations was recommended. It would handle communication with the public regarding adverse events. Finally, the task force recommended the role of the Mental Health Advisory Panel be expanded to include long-range planning in the areas of legal barriers, coordination and continuity of care, population responsibilities, and structural and functional analysis of the forensic mental health system of care.

    Mr. Pete Haun, Director, Department of Corrections, reported to the committee his plans as the new director of the Department. He has taken a position against the establishment of an oversight committee because he feels it is unnecessary, impacts the budget, and creates conflicts. He agreed that there needs to be a closer working relationship and more communication with the community. There are plans to enlarge the role of the Corrections Advisory Council. He noted that the moratorium on the use of the restraining chair will be continued. Chair Tanner asked about the ability to medicate inmates involuntarily. Dr. Alden said inmates can be involuntarily medicated in emergency cases. Mr. Haun said policy needs to be developed to allow clinicians to use all approved management tools.

    Annual Report by the Division of Mental Health. Dr. Alden presented the annual program audit conducted by the Division of Mental Health which measures the clinical quality of care by each of the mental health centers in the state. She explained that the review includes a visit to each of the centers by the director of clinical quality review. Tracer cases are randomly selected and reviewed in-depth with clinical staff. The report includes reports on all statutorily mandated services for each center. Rep. Davis asked about the process of receiving services and the length of waiting lists for services. Dr. Alden said the Division is developing a more consistent determination for prioritizing waiting lists.

5.    Annual Reports _ Medically Underserved and Shortage Areas
    Physicians and Physician Assistants Grant and Scholarship Program. Mr. Bob Sherwood, Director, Bureau of Primary Care and Rural Health Systems, Division of Health Systems Improvement, distributed the handout Annual Reports - Physicians and Physician Assistants Grant and Scholarship Program. He said that the purpose of this program is to promote and facilitate the recruitment and retention of primary care health care providers to serve special populations in medically underserved areas of Utah. He stated that most loan repayment recipients who have filled their obligation feel that the financial aid was essential to establish their practice in rural Utah. He also noted that 9% of currently practicing rural primary care physicians have come from this program. He recommended changing statutory language to encourage approaches other than scholarship and loan repayment, such as focusing on retention.

    Nurse Education Financial Assistance Act. Elisa Hill, Coordinator, Community Health Nursing, reviewed the handout Annual Reports on the Utah Department of Health's Loan Repayment and Scholarship Programs . During FY 1997, 11 loan repayment grants were awarded totaling $125,010 and 8 scholarships totaling $89,661. She said the program has a very low breach of contract rate. Ms. Hill explained to the committee how impacts are measured and related successes of program recipients. She does not recommend contracting out or expanding the program at this time.

    Special Population Health Care Provider Financial Assistance and Retention Act. Mr. Bob Sherwood, Director, Bureau of Primary Care and Rural Health Systems, Division of Health

Systems Improvement , reported that current trend indicate that workforce issues tend to be due to maldistribution. Most graduates choose not to serve in urban underserved areas. He said similar to the rural problems, student loans for physicians or physician assistants man be too high for those practicing in urban underserved areas to repay.
        
    Mental Health Therapist Grant and Scholarship Act. Dr. Alden, referred to the handout Rural Mental Health Professional Committee Report . This committee awards grants and scholarships for the purpose of enhancing the presence of mental health professionals in rural areas. During FY 1997, the committee expended $35,781 in scholarships and grants. She said that the availability of these grants was a decisive factor in recruiting mental health professionals to rural mental health centers. The project is currently focused on high need areas.

6.    Other Business _ Chair Stephens asked Dr. Richard Melton, Department of Health, to introduce the new Ethnic Health Coordinator Khando Chazotsang. Ms. Chazotsang immigrated from Tibet three years ago, where she worked for the government on human resource development programs. She hopes to help bridge the gap for the ethnic community in Utah.

     The next meeting of the Health and Human Services Interim Committee will be held on November 19, 1997.

7.    Adjournment--

     MOTION: Rep. Saunders moved to adjourn the meeting at 12:15 p.m. The motion passed unanimously. Sen. Peterson and Reps. Baca and Carlson were absent for the vote.