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NH bill would add ALS to state'reportable conditions; sponsors and DHHS spar over cost and scope
Summary
Rep. Rosemarie Rung urged the House Health Committee to add amyotrophic lateral sclerosis (ALS) to the state's "critical health problems" statute so DHHS will count cases; DHHS officials said the change requires new rules, a HIPAA-compliant data system and substantial startup costs.
Representative Rosemarie Rung urged the House Committee on Health and Human Services and Elderly Affairs to approve House Bill 576-FN, a measure that would add amyotrophic lateral sclerosis (ALS) to the state'statute listing "critical health problems" and require providers to report diagnoses to the Department of Health and Human Services (DHHS).
Rung said the state lacks any current count of ALS cases and that a registry or simple case count is needed to understand local incidence and to detect possible environmental links, especially to toxic cyanobacteria blooms that have increased in New Hampshire lakes. "I just want to get a count," Rung told the committee, citing clusters found elsewhere and estimates that national ALS diagnoses could grow markedly over coming decades.
DHHS officials, including Whitney Hammond, interim deputy director of the Division of Public Health, and Jacqueline Chawla, bureau chief for Public Health Statistics and Informatics, told the committee that the statutory change would trigger administrative-rulemaking and require building a HIPAA'compliant data system, staff time and quality-control processes. Hammond said the department currently has no information system tied to the statutory "critical health problem" category and estimated that constructing, validating and securing a registry would take months and substantial up-front contracting costs.
Rung and several legislators pushed back on DHHS's fiscal-note estimates and staffing plan, comparing the proposed costs to neighboring states. Rung cited Vermont's initial implementation cost estimate of $75,000'$100,000 and Massachusetts' annual registry budget of under $203,000 as evidence DHHS's numbers look high. Legislators pressed DHHS on alternatives such as contracting with an academic center or reusing existing systems used for the lead-poisoning registry, but DHHS staff said the data elements and reporting streams differ and would require investigation before reuse could be confirmed.
Committee members also explored narrower statutory approaches that would require only a minimum data submission (case count and usual residence) rather than full registry functionality. DHHS officials responded that the current statute references administrative-rulemaking that defines required data elements, validation and reporting responsibilities; without that rulemaking the department cannot safely implement a low-cost ad hoc reporting process and must plan for infrastructure, identity verification, and quality assurance.
Testimony from the Rare Disease Advisory Council and researchers reinforced sponsors' concerns about ALS surveillance; several speakers said improved data would help families and researchers and could inform future workforce and home-health planning in lake-region communities. Public commenters urged the committee to approve the bill or pursue a modest reporting approach to establish a baseline count.
No formal action was taken in the hearing; the committee heard public and agency testimony and closed the hearing on HB 576-FN.
If the committee moves forward, key choices remain: whether to require only a minimal, time-limited count of diagnoses; whether to authorize DHHS to rely on an existing registry or contract with a medical center; and how to balance privacy (HIPAA) and validation requirements with cost and speed of implementation.
