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2005 Testimony

Testimony Before The Senate Human Services Committee

Judy Lee, Chairman

SB 2395 - Russell Silver Syndrome

February 2, 2005

Chairman Lee and members of the committee, I am Tamara Gallup-Millner, director of the Children’s Special Health Services (CSHS) unit, which is located in the Medical Services Division in the Department of Human Services. I’m here to provide information related to SB 2395.

Work done in the CSHS unit focuses on children with special health care needs and their families. Children and youth included in this population have chronic conditions of some kind and a need for health and related services generally beyond those needed by most children. In North Dakota, about 12.4% or 19,500 children under age 18 are estimated to have a special health care need based on the definition I’ve just described.

Families we work with in CSHS report that having a child with special health care needs has a financial impact on their family. Some families do not have insurance, but more often, the health care coverage they do have does not meet all of their child’s needs. The care that is required can become a cumulative burden when expenses are incurred year after year. Many families we hear from share the need that gave impetus to this bill.

If passed, SB 2395 would require CSHS to provide medical food and coverage for growth hormone treatment at no cost to individuals under age eighteen who have been diagnosed with Russell Silver Syndrome, regardless of income.

While I recognize the importance of services for all children with special health care needs and their families, including children with Russell Silver Syndrome, there are also important implications that merit attention as this bill is considered.

  1. Eliminating the income eligibility requirement for treatment services through CSHS is setting a precedent that certain conditions receive prefferential treatment. Families that have children with asthma, diabetes, cerebral palsy, cleft lip and palate, hearing loss, cystic fibrosis, etc., would need to meet the eligibility criteria at 185% of the federal poverty level, while those with Russell Silver Syndrome would not. Is this fair to other families that have children with high medical expenses? The Legislature mandated the eligibility level currently used for CSHS treatment services in 2001.
  2. Definitions for “medical food” and “coverage for growth hormone treatment” have not been included in the bill. These terms could be very narrowly or very broadly interpreted. For example, does the term “medical food” mean that a typical infant formula like Similac be provided, just because its concentration has been adjusted to provide more calories in order to promote adequate growth? Similac is a formula many well babies routinely use in the first year of life. Or, does “medical food” imply coverage of various formulas that are used as the primary source of nutrition for children if they require tube feedings in order to increase caloric intake? Does “coverage for growth hormone treatment” literally mean only the medication used for hormone replacement or does it include office visits, lab, x-rays, etc. needed for monitoring whether the medication is actually achieving the desired results? Legislative intent needs to be clear so that expectations about covered services are well understood.
  3. Use of private insurance coverage is not addressed. The vast majority of children CSHS serves have a source of health care coverage. Usually, CSHS is a secondary payer and takes a gap-filling role. Using this approach, we have been able to spread available resources to help more children. Currently, CSHS limits reimbursement for diagnostic and/or treatment services in a one-year period to $20,000 per child regardless of the number of eligible conditions a child may have. When benefits are coordinated with other payers, the limit rarely becomes an issue for eligible families. It’s unclear in SB 2395 whether private insurance can be used if it is available. If it is not to be used, CSHS would be sole payer for all of the defined services for these children, which would increase the fiscal impact.
  4. Impact on the CSHS unit’s current services and programs is possible. Although considered rare, the incidence of this syndrome is truly not known. Its unclear how many children might receive medical food and coverage for growth hormone treatment. Unless additional funding is made available, CSHS will need to redirect current resources to meet service needs of children with Russell Silver Syndrome. Although not a certainty, this could lead to elimination of other services that currently are provided.
  5. Characteristics of Russell Silver Syndrome vary widely. Some individuals have many of the documented traits associated with this syndrome, while others have very few. Required treatment may vary based on each individual’s specific medical needs which may or may not be consistent with services that are included in this bill.

This concludes my testimony. I would be happy to respond to any questions you may have.

 

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