HB252 - ericsundberg/legwiki GitHub Wiki
HB 252 Sickle cell disease; statewide registry created, collection of disease case information, report.
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| Health and Human Services | Health | On Agenda (1/23/24) | |||||||||||||
Sickle cell disease; statewide registry; collection of sickle cell disease case information; penalties; notification; annual report. Creates a statewide registry of sickle cell disease patients to be maintained by the State Health Commissioner. The bill establishes: (i) standards and selection criteria for the collection of sickle cell disease information; (ii) penalties for unauthorized use of data from such registry; and (iii) notice requirements for patients whose personal identifying information has been submitted to such registry. The bill allows patients diagnosed with sickle cell disease to self-report information to the sickle cell disease registry. Under the bill, a patient has the right to opt out of having his information reported to the statewide sickle cell disease registry. The bill also directs the Commissioner to submit an annual report of the information obtained from the sickle cell disease registry to the Governor and the General Assembly by December 1 of each year.
- Joshua G. Cole (chief patron)
- None
01/04/24 House: Prefiled and ordered printed; offered 01/10/24 24104509D PDF
- 01/04/24 House: Prefiled and ordered printed; offered 01/10/24 24104509D
- 01/04/24 House: Referred to Committee on Health and Human Services
- 01/15/24 House: 01/16/24 House: Assigned sub: Health
This bill has a fiscal impact statement.
This bill does have a submitted budget amendment, HB30 Item 283 #8h.
1. Bill Number: HB343
House of Origin| Stage | Status |
|---|---|
| Introduced | ✔ |
| Substitute | |
| Engrossed |
| Stage | Status |
|---|---|
| In Committee | |
| Substitute | |
| Enrolled |
2. Patron: Cole
3. Committee: Health and Human Services
4. Title: Sickle cell disease; statewide registry; collection of sickle cell disease case information.
5. Summary: Creates a statewide registry of sickle cell disease patients to be maintained by the State Health Commissioner. The bill establishes: (i) standards and selection criteria for the collection of sickle cell disease information; (ii) penalties for unauthorized use of data from such registry; and (iii) notice requirements for patients whose personal identifying information has been submitted to such registry. The bill allows patients diagnosed with sickle cell disease to self-report information to the sickle cell disease registry. Under the bill, a patient has the right to opt out of having his information reported to the statewide sickle cell disease registry. The bill also directs the Commissioner to submit an annual report of the information obtained from the sickle cell disease registry to the Governor and the General Assembly by December 1 of each year.
6. Budget Amendment Necessary: Yes, item 277.
7. Fiscal Impact Estimates:
7a. Expenditure Impact:
Fiscal Year Dollars Positions Fund 2024
2025 $405,260 3 01000
2026 $405,260 3 01000
2027 $286,077 2 01000
2028 $286,077 2 01000
2029 $286,077 2 01000
2030 $286,077 2 01000
8. Fiscal Implications: The provisions of this legislation would have a fiscal impact on the Virginia Department of Health (VDH) to create a statewide registry for sickle cell disease that is maintained by the State Health Commissioner. The bill would require hospitals, clinics, and independent pathology laboratories to report information about patients living with sickle cell disease to the Commissioner to create the registry. The bill states that the purpose of the registry shall include:
1. Determining means of improving the diagnosis and treatment of sickle cell disease patients.
2. Determining the need for and means of providing better long-term, follow-up care to sickle cell disease patients.
3. Conducting epidemiological analyses of the incidence, prevalence, survival, and risk factors associated with occurrence of sickle cell disease in Virginia.
4. Improving rehabilitative programs for sickle cell disease patients.
5. Assisting in the training of hospital personnel.
6. Determining other needs of sickle cell disease patients and health personnel.
VDH does not have a system to maintain all patient data that is reported by hospitals, clinics, and independent pathology laboratories. VDH’s Office of Information Management estimated it would take approximately two years to develop the system and promulgate necessary regulations. There would be ongoing costs to maintain the system and to meet the provisions of the legislation. VDH would need two developers in the Office of Information Management to develop the system estimated at a total cost of $250,000. Servers for the registry would cost $14,688 annually, and database disaster recovery costs are $19,488 annually. VDH would also need a program coordinator ($103,492 salary and fringe) and partial support of an existing Blood Disorders Coordinator ($7,600 annually). These positions would be responsible for managing the system properly, monitoring project progression, producing relevant data reports, assuring data quality, and conducting site visits as required by the bill. VDH would also need $10,000 for travel, printing, media campaigns and awareness efforts
Beginning in FY2027 after the development of the database is complete, the two developer positions will no longer be needed. However, a senior epidemiologist would be needed once it is up and running to manage of the data related responsibilities outlines in the legislation. The cost of this position is $130,809 including salary and fringe benefits.
Any costs to promulgate regulations can be handled within existing resources.
9. Specific Agency or Political Subdivisions Affected: The Virginia Department of Health
10. Technical Amendment Necessary: No.
11. Other Comments: None.
The language of HB252 can be viewed here.
Thank you, Mr. Chair.
the legislation before you aims to create a comprehensive statewide registry for sickle cell disease, promoting research, improving patient care, and maintaining the confidentiality of patient information through data-sharing agreements.
According to our own state department of health:
- 1 in 325 African Americans are living with sickle cell disease in Virginia
- 1 in 12 African Americans have the sickle cell trait in Virginia
- Since Virginia added Hemoglobinopathy Screening to its Newborn Testing in July of 1989, on average, 75 newborns have been identified yearly with sickle cell disease.
If you’re considering why the need for a state-wide sickle cell registry, the creation of this registry would:
- Improve the diagnosis and treatment of sickle cell disease patients.
- Determine the need for and means of providing better long-term and follow-up care.
- Conduct epidemiological analyses of incidence, prevalence, survival, and risk factors associated with sickle cell disease in Virginia.
- Improve rehabilitative programs for sickle cell disease patients.
- Assist in the training of hospital personnel.
- Determine other needs of sickle cell disease patients and health personnel.
Here is how the bill works:
Information Reporting Requirements (§ 32.1-73.21):
- Hospitals, clinics, and independent pathology laboratories must provide information on patients with sickle cell disease to the Commissioner.
- Physicians are required to report patient information unless it has already been reported by a hospital, clinic, or in-state pathology laboratory.
- Information to be reported includes patient details such as name, address, sex, race, diagnosis, trait status, newborn screening data, and other relevant identifying information.
- The Commissioner will use this information to establish and maintain a statewide sickle cell disease registry.
Purpose of the Statewide Registry (§ 32.1-73.21):
- Improve the diagnosis and treatment of sickle cell disease patients.
- Determine the need for and means of providing better long-term, follow-up care.
- Conduct epidemiological analyses of incidence, prevalence, survival, and risk factors associated with sickle cell disease in Virginia.
- Improve rehabilitative programs for sickle cell disease patients.
- Assist in the training of hospital personnel.
- Determine other needs of sickle cell disease patients and health personnel.
On-Site Data Collection (§ 32.1-73.22):
- The Commissioner or designee may perform on-site data collection at consenting hospitals, clinics, independent pathology laboratories, and physician offices to ensure the completeness and accuracy of the registry.
- Criteria for selecting facilities for on-site data collection include the expected annual number of sickle cell disease case reports, historical completeness and accuracy of reporting rates, and whether the facility maintains its own sickle cell disease registry.
Confidentiality and Data Sharing (§ 32.1-73.23):
- Information submitted is to be kept confidential by the Commissioner and recipients.
- Release of information is allowed only in the form of statistical or other studies that do not identify individual cases.
- The Commissioner may enter into reciprocal data-sharing agreements with other sickle cell disease registries, allowing the exchange of information while ensuring confidentiality.
Thank you Mr. Chair,
HB252 is a bill to create a sickle cell registry maintained by the State Health Commissioner. The bill has a Budget Item 283 #8h, designating $150,000 in FY25 and FY26.
Combatting sickle cell anemia is a long overdue issue which has disproportionately affected Black Virginians.
In the United States 1 in every 365 babies will be born with sickle cell disease. For White babies that chance is 1 in 333; for Black babies that chance is 1 in 13.
The registry will provide much needed help to sufferers, connecting those with the disease to resources on healthcare, behavioral health, clinical trails, and more.
This is a painful disease; but it's a disease we can do something about.
This would have a fiscal impact that comes from the need to hire additional staff within the Health Commissioners office:
- 2025 $405,260 for 3 positions
- 2026 $405,260 for 3 positions
- 2027 $286,077 for 2 positions
- 2028 $286,077 for 2 positions
- 2029 $286,077 for 2 positions
- 2030 $286,077 for 2 positions
I hope it will be the will of this body to report the bill to full committee.
Item 283 #8h First Year - FY2025 Second Year - FY2026 Health and Human Resources Department of Health $150,000 $150,000 GF
Language Page 315, line 47, strike "$35,292,057" and insert "$35,442,057". Page 315, line 47, strike "$35,292,057" and insert "$35,442,057".
Thank you Mr. Chair,
Mr. Chair, HB252 is a bill to create a sickle cell registry maintained by the State Health Commissioner.
Combatting sickle cell anemia is a long overdue issue which has disproportionately affected Black Virginians.
In the United States 1 in every 365 babies will be born with sickle cell disease. For White babies that chance is 1 in 333; for Black babies that chance is 1 in 13.
The registry will provide much needed help to sufferers, connecting those with the disease to resources on healthcare, behavioral health, clinical trails, and more.
This is a painful disease; but it's a disease we can do something about.
- Let us give hope for those suffering;
- Let us give them care and aid;
- Let us keep those overcoming sickle cell anemia in our minds and in our prays on this Black History Month.
I hope it will be the will of this body to pass and engross the bill to its third reading.
Thank you Mr. Chair,
Mr. Chair, HB252 is a bill to create a sickle cell registry maintained by the State Health Commissioner.
Combatting sickle cell anemia is a long overdue issue which has disproportionately affected Black Virginians.
The registry will provide much needed help to sufferers, connecting those with the disease to resources on healthcare, behavioral health, clinical trails, and more.
I hope it be the will of the committee to report the bill to full committee.
Thank you Madam Chair,
Madam Chair, HB252 is a bill to create a sickle cell registry maintained by the State Health Commissioner.
Combatting sickle cell anemia is a long overdue issue which has disproportionately affected Black Virginians.
The registry will provide much needed help to sufferers, connecting those with the disease to resources on healthcare, behavioral health, clinical trails, and more.
I hope it be the will of the committee to report the bill to full committee.
No support or opposition is currently noted.