HB 644-FN - AS INTRODUCED
2019 SESSION
19-0767
01/03
HOUSE BILL 644-FN
AN ACT establishing a registry for amyotrophic lateral sclerosis.
SPONSORS: Rep. Campion, Graf. 12; Rep. Ebel, Merr. 5; Sen. Hennessey, Dist 5; Sen. Rosenwald, Dist 13
COMMITTEE: Health, Human Services and Elderly Affairs
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ANALYSIS
This bill establishes an amyotrophic lateral sclerosis (ALS) registry in the department of health and human services. Under this bill, health care providers who are qualified to make a diagnosis of ALS are required to report new cases of ALS to the department. The commissioner of the department of health and human services is granted rulemaking authority for the purposes of the bill.
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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Matter which is either (a) all new or (b) repealed and reenacted appears in regular type.
19-0767
01/03
STATE OF NEW HAMPSHIRE
In the Year of Our Lord Two Thousand Nineteen
AN ACT establishing a registry for amyotrophic lateral sclerosis.
Be it Enacted by the Senate and House of Representatives in General Court convened:
1 Purpose and Intent. The general court finds and declares that:
I. Amyotrophic lateral sclerosis (ALS), also commonly known as Lou Gehrig’s disease, is a chronic and progressive neurodegenerative motor neuron disease affecting some 30,000 people in the United States at any given time. About 5,600 people are diagnosed each year in the United States. It is estimated that ALS is responsible for nearly 2 deaths per 100,000 of the population annually. ALS is about 20 percent more common in males than in females and most often diagnosed among Caucasians. Age at onset may vary from 40 to 70 years old, although other people at other ages may develop the disease as well. The duration of the disease can vary from 2 to 5 years after which most cases die from the disease or other complications. There have, however, been individuals who have lived as little as one year and as long as 20 years. The lack of an ALS registry to keep track of disease trends over time makes it difficult to determine whether the occurrence of the disease is increasing and why.
II. Although recent advances in ALS research have resulted in the development of some drug therapies, the primary approach to management of the disease is symptomatic treatment. The most common form of ALS is called sporadic ALS. About 5-10 percent of cases are the inherited variety known as familial ALS. While the exact cause of ALS is not fully understood, both genetic and environmental factors are believed to contribute to the etiology of the disease. In addition to the genetic link, working theories on the cause of motor neuron degeneration in ALS include exposure to an environmental toxin, a viral infection, an inflammatory response, and other abnormalities in neurotransmission. There is a national and international movement by ALS clinicians, patients, and families to develop standards and procedures for patient registries and follow-up studies that will facilitate understanding of the causes and cures for the devastating disease.
III. New Hampshire does not currently have a way to identify all persons with ALS in the state in order to facilitate care coordination and research. A registry would allow for identifying all persons with ALS in order to establish incidence and prevalence of the disease. In addition to identifying confirmed cases of the disease, a state registry would provide complete, higher quality data that allows for follow-up with patients, physicians, and caregivers for additional data collection. A well designed, efficient ALS registry would allow for timely population-based incidence and prevalence estimates of the disease as well as provide a basis for research studies related to the causes and cures for ALS. A well-functioning ALS registry may also be an important support for future decision making related to identifying the causes as well as prevention and treatment of ALS.
IV. Therefore, this act establishes the amyotrophic lateral sclerosis registry in the department of health and human services.
2 New Subdivision; Amyotrophic Lateral Sclerosis Registry. Amend RSA 126-A by inserting after section 77 the following new subdivision:
Amyotrophic Lateral Sclerosis Registry
126-A:78 Amyotrophic Lateral Sclerosis Registry.
I. There shall be established a state registry in the department which shall include a record of all reported cases of amyotrophic lateral sclerosis (ALS) that occur in New Hampshire and other information relevant and appropriate to conduct thorough and complete epidemiologic surveys of ALS, to enable analysis of this problem, and to facilitate planning for services to persons with ALS and their families. The department may enter into an agreement with an appropriate entity for the management of the registry; provided, that any records and data submitted to the department pursuant to this subdivision shall be the property of the department.
II. Physicians and any other licensed or certified health care provider who is qualified by training to make the diagnosis and who then makes the diagnosis that a person is affected with ALS shall report all new cases of this diagnosis to the department in a form and manner prescribed by the commissioner. The report shall be in writing and shall include the name and address of the person submitting the report and the person's date of birth, gender, and zip code at birth residence, and the specific diagnosis of the person diagnosed as having ALS. The department shall assign a unique identification code to identify the person diagnosed as having ALS. The code shall not include the name or address of the person.
III. All information required to be reported under this subdivision shall be confidential. A physician or health care provider providing information to the department in accordance with this section shall not be deemed to be, or held liable for, divulging confidential information.
IV. Nothing in this section shall be construed to compel a person who has been reported as affected with ALS to submit to medical or health examination or supervision by the department.
126-A:79 Rulemaking. The commissioner shall adopt rules, pursuant to RSA 541-A, relative to:
I. Procedures for reporting cases of ALS under RSA 126-A:78.
II. Content of all forms required under this subdivision.
III. Confidentiality of records and information reported pursuant to this subdivision.
3 Effective Date. This act shall take effect 60 days after its passage.
19-0767
1/11/19
HB 644-FN- FISCAL NOTE
AS INTRODUCED
AN ACT establishing a registry for atrophic lateral sclerosis.
FISCAL IMPACT: [ X ] State [ ] County [ ] Local [ ] None
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| Estimated Increase / (Decrease) | |||
STATE: | FY 2020 | FY 2021 | FY 2022 | FY 2023 |
Appropriation | $0 | $0 | $0 | $0 |
Revenue | $0 | $0 | $0 | $0 |
Expenditures | Indeterminable Increase | Indeterminable Increase | Indeterminable Increase | Indeterminable Increase |
Funding Source: | [ X ] General [ ] Education [ ] Highway [ ] Other | |||
METHODOLOGY:
This bill establishes an amyotrophic lateral sclerosis (ALS) state registry within the Department of Health and Human Services under RSA 126-A to conduct epidemiologic surveys of ALS, enable analysis of the data, and facilitate planning for services to persons with ALS and their families. The bill requires physicians and other certified health care providers to report new cases of ALS diagnoses to the Department. The Department may enter into an agreement with an entity to maintain the registry and all information reported would remain confidential property of the Department.
The Department notes ALS is not a reportable disease under current state law, but a national registry currently exists which relies on administrative claims and self-reported data. In accordance with national research, the Department assumes a 2 per 100,000 incidence rate of new diagnoses and 5 per 100,000 prevalence rate annually. Based on the state population of approximately 1.3 million, the Department estimates 26 newly diagnosed individuals and 66 individuals living with ALS each year within New Hampshire.
The Department states that if it does not enter into an agreement with another entity, a new Senior Management Analyst full-time position at Labor Grade 26 Step 5 would be required to develop and maintain the database, work with providers to implement Department reporting requirements, and complete analyses. Estimated costs for this position are as follows:
Senior Management Analyst | FY 2020 | FY 2021 | FY 2022 | FY 2023 |
Salary | $63,000 | $63,000 | $66,000 | $66,000 |
Benefits | $32,000 | $34,000 | $36,000 | $37,000 |
Other | $14,000 | $6,000 | $6,000 | $6,000 |
Total | $109,000 | $103,000 | $108,000 | $109,000 |
The other costs in FY 2020 include office space, equipment, and other one-time expenses, while additional costs of $6,000 in each year thereafter include office space and current expenses.
The Department states that if enters into an agreement with another entity, it estimates a one-time cost of $195,000 in FY 2020 to develop the registry and $58,000 annual costs each year thereafter to maintain the registry. It anticipates 10 percent of a full-time equivalent position would be required to monitor data, complete analyses, and provide training to health care providers. Total estimated costs associated with an agreement are as follows:
Expenditure Type | FY 2020 | FY 2021 | FY 2022 | FY 2023 |
10 percent of FTE | $10,000 | $10,000 | $11,000 | $11,000 |
Registry Development | $195,000 | - | - | - |
Annual Maintenance | - | $58,000 | $58,000 | $58,000 |
Total | $205,000 | $68,000 | $69,000 | $69,000 |
AGENCIES CONTACTED:
Department of Health and Human Services
| Date | Body | Type |
|---|---|---|
| Jan. 30, 2019 | House | Hearing |
| Feb. 12, 2019 | House | Exec Session |
| Nov. 6, 2019 | House | Exec Session |
| House | Floor Vote |
Jan. 8, 2020: Inexpedient to Legislate: MA VV 01/08/2020 HJ 1 P. 48
: Committee Report: Inexpedient to Legislate (Vote 21-0; CC) HC 50 P. 11
Nov. 6, 2019: Executive Session: 11/06/2019 10:00 am LOB 205
: Retained in Committee
Feb. 12, 2019: Executive Session: 02/12/2019 01:00 pm LOB 205
Feb. 12, 2019: Division II Subcommittee Work Session: 02/12/2019 10:00 am LOB 205
Jan. 30, 2019: Public Hearing: 01/30/2019 01:30 pm LOB 205
Jan. 3, 2019: Introduced 01/03/2019 and referred to Health, Human Services and Elderly Affairs HJ 3 P. 23