HB 329-FN - AS INTRODUCED
2023 SESSION
23-0229
05/08
HOUSE BILL 329-FN
AN ACT establishing an ALS (Amyotrophic Lateral Sclerosis) registry in New Hampshire.
SPONSORS: Rep. J. Murphy, Graf. 12; Rep. Rung, Hills. 12; Rep. Palmer, Sull. 2; Rep. Merchant, Sull. 6; Rep. Calabro, Hills. 45; Rep. Nagel, Belk. 6; Rep. Stringham, Graf. 3
COMMITTEE: Health, Human Services and Elderly Affairs
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ANALYSIS
This bill establishes an ALS registry administered by the department of health and human services.
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Explanation: Matter added to current law appears in bold italics.
Matter removed from current law appears [in brackets and struckthrough.]
Matter which is either (a) all new or (b) repealed and reenacted appears in regular type.
23-0229
05/08
STATE OF NEW HAMPSHIRE
In the Year of Our Lord Two Thousand Twenty Three
AN ACT establishing an ALS (Amyotrophic Lateral Sclerosis) registry in New Hampshire.
Be it Enacted by the Senate and House of Representatives in General Court convened:
1 New Subdivision; Amyotrophic Lateral Sclerosis Registry. Amend RSA 126-A by inserting after section 97 the following new subdivision:
Amyotrophic Lateral Sclerosis Registry
126-A:98 Definitions. In this subdivision:
I. “Amyotrophic lateral sclerosis” or “ALS” means a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord.
II. “Health care provider” means a person, partnership, corporation, facility, or institution licensed or certified or authorized by law to provide professional health care service in this state to an individual during that individual’s medical care, treatment, or confinement.
III. “Registry” means the statewide amyotrophic lateral sclerosis incidence registry.
126-A:99 Registry Established. The commissioner of the department of health and human services shall establish, maintain, and operate a statewide amyotrophic lateral sclerosis incidence registry.
126-A:100 Duty of Health Care Providers. A health care provider that screens for, diagnoses, or provides therapeutic services to patients with amyotrophic lateral sclerosis shall report to the department of health and human services all individuals diagnosed as having amyotrophic lateral sclerosis not later than 6 months from the date of diagnosis. The report shall include information on each individual’s usual occupation and industry of employment and other elements determined by rule to be appropriate.
126-A:101 Confidentiality.
I.(a) All identifying information regarding an individual patient or health care provider is exempt from public inspection and copying under RSA 91-A and shall be kept confidential.
(b) Notwithstanding subparagraph (a), the commissioner may enter into data sharing and protection agreements with researchers or state, regional, or national amyotrophic lateral sclerosis registries for bidirectional data exchange, provided access under such agreements is consistent with the privacy, security, and disclosure protections in this subdivision. In the case of researchers, the commissioner shall also first obtain evidence of the approval of their academic committee for the protection of human subjects established in accordance with 45 C.F.R. Part 46. The commissioner shall disclose the minimum information necessary to accomplish a specified research purpose.
II. The department may disclose aggregated and deidentified information from the registry.
126-A:102 Annual Report. Annually, on or before January 15, the commissioner of the department of health and human services shall submit a written report to the governor, the chairperson of the house committee on health, human services and elderly affairs, and the chairperson of the senate committee on health and human services containing the statewide prevalence and incidence estimates of amyotrophic lateral sclerosis, including any trends occurring over time across the state. Reports shall not contain information that directly or indirectly identifies an individual patient or health care provider.
126-A:103 Rulemaking. The commissioner shall adopt rules RSA 541-A to implement this subdivision, including rules to govern the operation of the registry, data reported to the registry, and data release protocols.
126-A:104 Liability.
I. No action for damages arising from the disclosure of confidential or privileged information shall be maintained against any person, or the employer or employee of any person, who participates in good faith in the reporting of amyotrophic lateral sclerosis registry data or data for amyotrophic lateral sclerosis morbidity or mortality studies in accordance with this subdivision.
II. No license of a health care provider shall be denied, suspended, or revoked for the good faith disclosure of confidential or privileged information in the reporting of amyotrophic lateral sclerosis registry data or data for amyotrophic lateral sclerosis morbidity or mortality studies in accordance with this subdivision.
III. Nothing in this section shall be construed to apply to the unauthorized disclosure of confidential or privileged information when such disclosure is due to gross negligence or willful misconduct.
126-A:105 Educational Materials.
I. On or before December 31, 2024, the commissioner shall develop and make available written educational materials that provide information about the National Amyotrophic Lateral Sclerosis Registry, including:
(a) Information regarding how to participate in the National Amyotrophic Lateral Sclerosis Registry and resources that can provide assistance with the registration process;
(b) Information regarding the eligibility requirements for participation in the National Amyotrophic Lateral Sclerosis Registry; and
(c) Contact information for the National Amyotrophic Lateral Sclerosis Registry and local and national research entities investigating the causes of amyotrophic lateral sclerosis.
II. On or before December 31, 2024, the department of health and human services, in cooperation with appropriate professional licensing boards and professional membership associations, shall ensure the educational materials developed pursuant to paragraph I are made available to all licensed health care providers in New Hampshire.
2 Effective Date. This act shall effect 60 days after its passage.
23-0229
1/6/23
HB 329-FN- FISCAL NOTE
AS INTRODUCED
AN ACT establishing an ALS (Amyotrophic Lateral Sclerosis) registry in New Hampshire.
FISCAL IMPACT: [ X ] State [ ] County [ ] Local [ ] None
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| |||
| Estimated Increase / (Decrease) | |||
STATE: | FY 2023 | FY 2024 | FY 2025 | FY 2026 |
Appropriation | $0 | $0 | $0 | $0 |
Revenue | $0 | $0 | $0 | $0 |
Expenditures | $0 | $857,700 | $405,700 | $405,700 |
Funding Source: | [ X ] General [ ] Education [ ] Highway [ ] Other | |||
METHODOLOGY:
This bill requires the Department of Health and Human Services to establish a statewide Amyotrophic Lateral Sclerosis (ALS) registry. Newly-reported cases of ALS would be reported to the Department by health care providers no later than six months after diagnosis. The bill would also require the Department to submit an annual report containing prevalence and incidence estimates of ALS, and to develop and make available written educational materials that provide information about the proposed registry.
Based on an ALS prevalence rate (the number of people alive with a certain condition) of 5.1 per 100,000 and an incidence rate (the number of newly-diagnosed cases of a certain condition) of 2.0 per 100,000, the Department estimates there are 66 people living with ALS in NH, and that 26 people will be newly-diagnosed each year. The Department expects this relatively small number of newly-diagnosed cases will nonetheless result in a large volume of mandated reports from health care providers, and that two full-time employees (both senior management analysts, labor grade 26, step 5) will be needed for development of the registry, data management, reporting, and provider training.
In addition to employee costs, the Department anticipates needing to design and maintain a secure portal to ensure the privacy and security of information being submitted. The Department anticipates an initial cost of $650,000 for a contractor to design this system, and ongoing maintenance costs of $200,000 per year. Finally, Department expects two staff licenses to cost a total of $1,700 annually. Total costs are shown below. It is assumed that all costs will be paid from the General Fund.
| FY 2024 | FY 2025 | FY 2026 |
POSITION COSTS |
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|
Senior Mgmt Analyst (LG 26, Step 5) |
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|
|
Salary | $ 64,682 | $ 64,682 | $ 64,682 |
Benefits | $ 35,445 | $ 36,918 | $ 37,532 |
Miscellaneous | $ 4,200 | $ - | $ - |
Total (Rounded to Nearest Thousand) | $ 103,000 | $ 102,000 | $ 102,000 |
Total x 2 Positions | $ 206,000 | $ 204,000 | $ 204,000 |
I.T. COSTS |
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|
|
Portal Design | $ 650,000 | $ - | $ - |
Ongoing Maintenance | $ - | $ 200,000 | $ 200,000 |
Employee Licenses | $ 1,700 | $ 1,700 | $ 1,700 |
Total | $ 651,700 | $ 201,700 | $ 201,700 |
GRAND TOTAL: | $ 857,700 | $ 405,700 | $ 405,700 |
AGENCIES CONTACTED:
Department of Health and Human Services