Public Comments for 01/25/2021 Appropriations - Health and Human Resources Subcommittee
HB1995 - Rare Disease Council and Rare Disease Council Fund; created, report.
Rare disease patients in Virginia face unique challenges every day, from obtaining an accurate diagnosis and accessing medical specialists with knowledge of their condition, to battling for fair insurance coverage of their treatment and care. As the mother of two children with a rare disease, I can certainly relate to some of these unique challenges. My son Stephen was born with a rare metabolic disorder called isovaleric acidemia detectable with newborn screening. Due to lack of expanded newborn screening, his disorder was not diagnosed until he was 3 ½ years old resulting in a traumatic brain injury and multiple complex medical issues. Thanks to knowledge gained from Stephen, my daughter was diagnosed with the same disorder before birth. Her early diagnosis enabled her to receive immediate treatment for her high school this year and go on to college. Since their diagnosis, we have faced various challenges over the years. Finding a pharmacy to fill their prescriptions for the medications to treat their disorder has been difficult. There have been hurdles in obtaining their medical formula and receiving insurance coverage for it. The current pandemic poises new problems. They are definitely in the high-risk category keeping them primarily at home and no access to the vaccine in our county. I am the primary caregiver for Stephen, but do not fall into a prioritized category for the vaccine. These are just a few examples of struggles we and others in the rare disease community across the Commonwealth face on a daily basis and are left to find solutions on our own. The Virginia Rare Disease Advisory Council would help address the challenges faced by rare disease patients, their families and their caregivers by providing a forum for stakeholders across the state to analyze the needs of the rare disease community and make recommendations on how to improve public policy. To date, sixteen states (Alabama, Connecticut, Illinois, Kentucky, Massachusetts, Minnesota, Missouri, New Hampshire, New York, Nevada, North Carolina, Ohio, Pennsylvania, Tennessee, Utah, and West Virginia) have created a Rare Disease Advisory Council and proven that it is an effective way to ensure better government engagement and action on issues of importance to the rare disease community. I urge you to vote in support of HB 1995 and help Virginia become the 17th state to enact an RDAC. Thank you.
On behalf of the 1-in-10 individuals in Virginia with one of the approximately 7,000 known rare diseases, the National Organization for Rare Disorders (NORD) thanks you for putting House Bill 1995(HB1995) on the Appropriations - Health and Human Resources Subcommittee’s agenda. HB1995 establishes a Rare Disease Advisory Council (RDAC), which if passed, would help to give a voice to the rare disease community within Virginia’s state government. NORD urges you to vote in support of HB1995 and swiftly move it out of your committee. NORD is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. We are committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services. Rare diseases are present across a broad spectrum of medical conditions. For example, there are more than 500 types of rare cancers and all forms of pediatric cancer are rare. For patients suffering from these and numerous other rare conditions, it can take several years to receive an accurate diagnosis and effective treatment. Further, only a handful of rare diseases are well-understood, with most not receiving sufficient attention or funding for research. Creating an RDAC in Virginia will give rare disease patients a unified voice in Virginia ’s state government, helping to provide educational awareness and make recommendations to elected officials and other state leaders on how rare diseases are handled and treated in the state. From providing information on the diagnostic journey, to making recommendations on state programs such as newborn screening, the council will serve as a tremendous opportunity for important decision-makers in Virginia to better understand and meet the needs of their constituents. Since this council would include broad participation from the different health care sectors present in Virginia, it will also serve as an educational resource to all stakeholders about the ways rare disease patients interact with our health care system. In creating this council, Virginia will be joining sixteen other states (Alabama, Connecticut, Illinois, Kentucky, Massachusetts, Minnesota, Missouri, New Hampshire, New York, Nevada, North Carolina, Ohio, Pennsylvania, Tennessee, Utah, and West Virginia) who have already enacted similar legislation in support of their rare disease community. Once again, on behalf of the Virginia rare disease community, we thank you for putting HB1995 on the Appropriations - Health and Human Resources Subcommittee’s agenda and urge its swift passage. For any questions, please feel free to contact Annissa Reed via email at areed@rarediseases.org. Thank you for your consideration.
Dear Chairman Sickles and Members of the House Health, Welfare, and Institutions Committee: On behalf of the 1-in-10 individuals in Virginia with one of the approximately 7,000 known rare diseases, the National Organization for Rare Disorders (NORD) thanks you for putting House Bill 1995(HB1995) on the Health, Welfare, and Institutions Committee’s agenda. HB1995 establishes a Rare Disease Advisory Council (RDAC), which if passed, would help to give a voice to the rare disease community within Virginia’s state government. NORD urges you to vote in support of HB1995 and swiftly move it out of your committee. NORD is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. We are committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services. Rare diseases are present across a broad spectrum of medical conditions. For example, there are more than 500 types of rare cancers and all forms of pediatric cancer are rare. For patients suffering from these and numerous other rare conditions, it can take several years to receive an accurate diagnosis and effective treatment. Further, only a handful of rare diseases are well-understood, with most not receiving sufficient attention or funding for research. Creating an RDAC in Virginia will give rare disease patients a unified voice in Virginia ’s state government, helping to provide educational awareness and make recommendations to elected officials and other state leaders on how rare diseases are handled and treated in the state. From providing information on the diagnostic journey, to making recommendations on state programs such as newborn screening, the council will serve as a tremendous opportunity for important decision-makers in Virginia to better understand and meet the needs of their constituents. Since this council would include broad participation from the different health care sectors present in Virginia, it will also serve as an educational resource to all stakeholders about the ways rare disease patients interact with our health care system. In creating this council, Virginia will be joining sixteen other states (Alabama, Connecticut, Illinois, Kentucky, Massachusetts, Minnesota, Missouri, New Hampshire, New York, Nevada, North Carolina, Ohio, Pennsylvania, Tennessee, Utah, and West Virginia) who have already enacted similar legislation in support of their rare disease community. Once again, on behalf of the Virginia rare disease community, we thank you for putting HB1995 on the Health, Welfare, and Institutions Committee’s agenda and urge its swift passage. For any questions, please feel free to contact Annissa Reed via email at areed@rarediseases.org. Thank you for your consideration. Sincerely, Heidi Ross Annissa Reed Director of Policy State Policy Manager, Eastern Region National Organization for Rare Disorders National Organization for Rare Disorders
I am for nurse practitioner to be able to practice without a doctor being there
HB2092 - DBHDS; background checks, persons providing contractual services.
The Department of Behavioral Health and Developmental Services strongly supports this agency bill to extend background check and central registry requirements to contracted staff providing direct care services, oftentimes alone, to individuals receiving DBHDS licensed services.
In favor of programs to better facilitate the development and progress of my community.
On behalf of the Virginia Association of Community-Based Providers (VACBP), the largest association of private-sector providers of community-based behavioral health services to Virginia's Medicaid population, I urge you to vote yes on HB 1874. The VACBP supports efforts to identify and provide services to individuals committed to local correction facilities in a timely manner. We also strongly support the ability for private-sector providers to partner with correction facilities to help meet the behavioral health needs of those in their facilities. Thanks to Del. Coyner for introducing this legislation. The VACBP also supports HB 2092, which will ensure all providing direct patient services, including those contracting with a provider and those employed by a temp agency used by a provider. Thanks to Del. Willett for introducing this bill.
We will support the bill as introduced; DBHDS worked with us to address the greatest of our concerns and reduced the potentially devastating impact on the providers of developmental disability services to a manageable level. Especially in these difficult times, providers have used staffing agencies to supplement already depleted staffing when self-isolation/quarantine was required. And as vacancies become more difficult to fill especially with increasing competition driven by the minimum wage increases, staffing agencies will be critical. We would, however, discourage providers who use contract staff for “direct care” roles to be cautious about the potential misclassification of employees. We also note that the provisions added to §37.2-416 (private providers) and §37.2-506 (CSBs & BHA) were not added to §37.2-314 (DBHDS operated facilities)
We will support the bill as introduced; DBHDS worked with us to address the greatest of our concerns and reduced the potentially devastating impact on the providers of developmental disability services to a manageable level. Especially in these difficult times, providers have used staffing agencies to supplement already depleted staffing when self-isolation/quarantine was required. And as vacancies become more difficult to fill especially with increasing competition driven by the minimum wage increases, staffing agencies will be critical. We would, however, discourage providers who use contract staff for “direct care” roles to be cautious about the potential misclassification of employees. We also note that the provisions added to §37.2-416 (private providers) and §37.2-506 (CSBs & BHA) were not added to §37.2-314 (DBHDS operated facilities)
HB2111 - Maternal Health Data and Quality Measures, Task Force on; established, report.
The Virginia Nurses Association strongly supports HB2111 and appreciates the inclusion of nursing in the membership of the task force. We look forward to continuing this important work.
In favor of programs to better facilitate the development and progress of my community.
Voices for Virginia's Children, on behalf of the Racial Truth & Reconciliation VA coalition with over 400 members, is supportive of HB2111. In 2019, Virginia Mercury reported that Black women in VA were 3 times more likely to die after giving birth than a white woman, a disparity Gov. Northam made a goal to eliminate by 2025. In order to do so, we must identify and evaluate disparities in existence in order to combat them through equitable policy responses. COVID-19 has especially highlighted the disparities that contribute to poor health outcomes and further impact marginalized communities. This policy is a step in the right direction in improving maternal health and birth outcomes. Thank you, Del. Herring for championing this bill.
HB2188 - Engineered septic systems; Department of Health, et al., to initiate a 3-yr. pilot program to study.
In favor of programs to better facilitate the development and progress of my community.
Thank you for the opportunity to comment on HB 2188. Friends of the Rappahannock SUPPORTS this legislation. This bill requires the Department of Health and Department of Environmental Quality, in partnership with the Middle Peninsula Planning District Commission and a participating institution of Virginia Sea Grant, to initiate a three-year pilot program designed to study the use of engineered septic systems that house and treat sewage effluent in an elevated, self-contained unit suitable for areas with high water tables and susceptible to flooding in Coastal Virginia. The pilot study septic unit will be installed in an upland location outside of any designated RPA or floodplain. The unit will be designed to meet pollution removal standards of the Department of Health and the Department of Environmental Quality. Thank you for your consideration of this bill and we hope you will support it.
HB2271 - Universal health care; Joint Commission on Health Care to study options for financing.
Please don't ruin our lives and State ! Thank You
No universal health care will cause too much debt and change out social security? I’ve worked my whole life and feel I deserve that money I have put in. Universal health care will break out infrastructure bad set the debt level even higher.
I tried to check off as many as I could understand 🙃why not just get to work for the money we pay
I would like to know what the bills have in them. Don't want anything in them hidden like they do in Washington.
In favor of programs to better facilitate the development and progress of my community.
I support these three bills. I believe a study to definitely suggest how best the Commonwealth of Virginia can get money out of politics is key to our raising ourselves up from the 10% worst states with respect to campaign contributions, with only 4 states more corrupted by money in politics than us. This is why I feel we need Del. Bulova's HJ526. I support Del. Samirah's HB2271. Having lived in Québec, Canada (just like our new Vice President), which is a Medicaid for all system with a Canadian Federal Grant, I can say the system works and works very well. I think that a Medicaid for Some system is the perfect one for Virginia to showcase as an option to the rest of the states, as a better solution than the drastic Medicare for all Federal bureaucracy. Samirah's bill would study just what a Public Option (Medicaid for Some) would look like. After all, it's what Obamacare, the ACA, should have been. Let's do what the Federal Government could not: Medicaid for Some: you have a Public Option. Finally, I support McNamara's HJ541. Daylight Savings is a joke. There is no reason to shift the clock twice a year and it causes less productive workers for an entire week after the time changes, injuring our economy. Arizona has no daylight savings, and Virginia would do well to follow, and lead the charge to eliminating Daylight Savings across the entire Eastern Seaboard. We literally spend 7 months in Summer Time, and only 5 in Standard Time. I hope this study will look into all possibilities including moving Virginia to Central Time permanently, just go into Summer Time in March, and never leave it. That would be my dream but I look forward to what this study will find.
HJ578 - Criminal justice, behavioral health, & other records; DBHDS to study feasibility of secure database.
Please don't ruin our lives and State ! Thank You
DBHDS appreciates the ability to study the issue outlined in HJ578 and develop recommendations with stakeholders. We are able to do this without a fiscal impact.
I would like to know what the bills have in them. Don't want anything in them hidden like they do in Washington.
HB1950 - Fetal and Infant Mortality Review Team; Va. Department of Health, et al., to establish, report.
Black women babies are 9x more likely to die during the during pregnancy and first 12 months of birth. No one knows why or has implemented systems to research. This is a very important bill. No reason black women are dealing with issues of maternal mortality and infant mortality rates that are extremely higher than other races.
The day I had been waiting so patiently for will never come. I can’t stop thinking had I requested more work or ultrasounds to be done, my baby girl would still be here. I beat myself daily and don’t know if this pain and void will ever leave. It was a Saturday, I noticed my baby not moving as much, I contacted my doula, she instructed it’s better to be safe than sorry, so I went to the ER. Initially they had trouble finding a heartbeat but they did and my baby’s heart was doing fine. They kept me on the monitor for about 30 minutes and said everything is fine and I’m free to go. I contacted my doula to express that movement still wasn’t like normal and is there anything else they normally do. She said you can ask if they will do an ultrasound to ensure everything fine or if they have another test that can provide more clarity for my nerves. Dr. Instructed I’m just overthinking and baby has a strong heartbeat so it’s no need. I said okay I have a doctors appointment on Monday anyway I can have them check. Fast forward Monday is hear and I’m at my OB for a checkup she goes to find a heartbeat and just like that it’s never comes. I’m terrified crying yelling and loss for words when I’m told there is no heartbeat and we need to run tests to see if there is anything at all. Nope nothing can be done. I’m 36 weeks and my baby girl is no longer hear. For weeks I’m reviewing everything over again and I’m looking at the autopsy report no reason is given. No one knows what happened. I go through phases of blaming myself to blaming my husband. I’m healthy, wealthy, college educated, and I made all of my prenatal appointments but my baby is still not hear. I can’t even be happy for my friends who are expecting because my baby is no longer here without an explanation I will never see her wiggle her toes and even gaze into her eyes. 26, African American, and afraid to get pregnant again. Please support this bill. Chelsea Stewart Richmond, Virginia
Establish a review team to study and improve outcomes for fetal and infant mortality (currently exists, but needs dedicated funds and structures to operate effectively) Virginia Needs to Review and Study Fetal and Infant Mortality The U.S. has one of the best healthcare systems in the world—and yet our fetal and infant mortality rate is unacceptably high. Within the U.S., Virginia ranks 21st, which demonstrates the need to study and improve in this area in the Commonwealth. Black women are 9 times more likely to lose a pregnancy than white women. It is imperative that this division along racial lines also be addressed. In order to do that, we must understand the factors that put women of color at substantially greater risk of losing a pregnancy. A Fetal and Infant Mortality Review (“FIMR”) Team would use an integrated, multidisciplinary, community-based approach to study all of the elements and circumstances that contribute to fetal and infant mortality. FIMR includes action-oriented processes to improve services, systems, and resources for women, infants, and families. These improvements are crucial if we are to address these problems. For all of the above reasons, I strongly support HB 1950.
My name is Rebecca Gotwalt and my [Senator/Delegate] is Chap Petersen/Karrie Delaney. Currently the Commonwealth is undeserved in many areas of reproductive healthcare. When I was young I was shamed and threatened by a Giles County Health employee for requesting a check up and birth control. After that failure, I fell pregnant and had to come up with what seemed an impossible amount of money and travel more than 120 miles round trip to obtain my abortion. If something as simple as birth control and abortion are so difficult to obtain, what chance do Virginians have who want to complete a healthy pregnancy? Maternal, fetal and infant mortality must be addressed – with an emphasis on the health of Black and brown families that have death rates up to nine times that of their white counterparts. Please support HB 1950 and move Virginia forward in our quest to provide quality reproductive healthcare for all.
I am for nurse practitioner to be able to practice without a doctor being there