Senator Maroney Welcomes Arts Grants to Woodbridge and Milford
Today, state Senator James Maroney (D-Milford) is welcoming state grants recently awarded to local arts organizations in Woodbridge, Milford, and West haven, all three towns in which Senator Maroney Represents, through the Department of Economic Community Development Office of the Arts. In Woodbridge, the Amity Teen Center and the Palestine Museum have been awarded funding, as well as the Milford Fine Arts Council and Pantochino Productions Inc. in Milford.
“The Amity Teen Center is such a deserving recipient of this award,” said Sen. Maroney. “It provides teens a safe, fun, and educational atmosphere where teens can be teens while expressing themselves. The Palestine Museum harbors a rich history and culture that will continue to teach generations for years to come. The Milford Fine Arts Council and Pantochino Productions both offer an outlet for creativity and theater that will forever enrich the lives of the community present and future. Both are so important as they continue to bring arts to the community bringing us together while serving as economic development draws for downtown Milford.”
I am thankful to the Department of Economic Community Development for their continued support with our local arts organizations that will benefit our community in the 14th district.”
The Amity Teen Center has been awarded $9,242 through the General Operating Support for Theaters and Performing Groups program. This program provides general operating support grants to Connecticut-based theaters and performing groups whose primary purpose is to present the performing arts to the general public. The Teen Center has also been awarded $1,255 through the CT Arts Endowment fund (CAEF). The CAEF was established by the Connecticut General Assembly to stimulate the development of private sector funding and to ensure the long-term stability of Connecticut’s arts industry by providing funding to organizations. In November, the Teen Center had been awarded $3,101 through the Supporting Arts Program which provides general operating support to help Connecticut’s arts organizations and municipal arts departments cover programmatic costs associated with their mission-related work. Also in Woodbridge, the Palestine Museum has been awarded $574 through the CT Arts Endowment fund.
In Milford, the Milford Fine Arts Council has been awarded $11,621 through the General Operating Support for Theaters and Performing Groups program and $646 through the CAEF program. In November, the Milford Fine Arts Council had previously been awarded $4,019 through the Supporting Arts Program. And Pantochino Productions Inc. in Milford has been awarded $5,601 through the General Operating Support for Theaters and Performing Groups program.
This type of funding through the Department of Economic Community Development Office of the Arts is flexible and gives the organization the ability to use the funds where the funds are most needed. An organization may use these funds for a specific project, however, from past final reports, most grantees use general operating support to cover staff salaries and/or fees paid to contractual workers, rent/mortgage, utilities, etc.
SENATOR RAHMAN GRATEFUL FOR $48,074 IN DISTRICT ARTS ORGANIZATION GRANTS IN GLASTONBURY, MANCHESTER
SENATOR RAHMAN GRATEFUL FOR $48,074 IN DISTRICT ARTS ORGANIZATION GRANTS IN GLASTONBURY, MANCHESTER
This week, State Senator MD Rahman (D-Manchester) was grateful that, in recent months, the 4th Senate District has received $48,074 in total grant funding through the Department of Economic and Community Development’s CT Arts Endowment Fund, Supporting Arts Grant and General Operating Support for Theaters and Performing Groups. In Glastonbury and Manchester, three groups received grant funding.
“Without local arts, the many talented people in our community would not have opportunities to entertain us, and our young performers would not be able to learn and grow their skills,” said Sen. Rahman. “I’m grateful to the Department of Economic and Community Development for its continued support of our local arts organizations.”
The General Operating Support for Theaters and Performing Groups funds provide general operating support grants to Connecticut-based theaters and performing groups whose primary purpose is to present the performing arts to the general public. The CT Arts Endowment Fund (CAEF) was established by the Connecticut General Assembly to stimulate the development of private sector funding and to ensure the long-term stability of Connecticut’s arts industry by providing funding to organizations. The Fund is managed by the Office of the State Treasurer and the program is administered by the Connecticut Office of the Arts (COA). Supporting Arts grants provide aid to theaters and performing groups with a primary purpose of presenting performing arts to the general public.
Organizations receiving funds included: Glastonbury: Layavinyasa – $9,316; Manchester:C.A.S.T, Inc. (CAST Children’s Theatre) – $13,190, Little Theatre of Manchester – $25,568
SENATOR NEEDLEMAN HIGHLIGHTS $156,360 IN DISTRICT ARTS ORGANIZATION GRANTS
SENATOR NEEDLEMAN HIGHLIGHTS $156,360 IN DISTRICT ARTS ORGANIZATION GRANTS
This week, State Senator Norm Needleman (D-Essex) welcomed the news that, in recent months, the 33rd Senate District has received $156,360 in total grant funding through the Department of Economic and Community Development’s CT Arts Endowment Fund, Supporting Arts Grant and General Operating Support for Theaters and Performing Groups. Across Clinton, Colchester, East Haddam, East Hampton, Essex and Old Saybrook, 10 different groups received funding ranging in value from thousands to more than $100,000 across the three programs.
“Our local arts organizations are a vital vein running through our communities,” said Sen. Needleman. “They allow fantasies and stories to come to life, entertain us with beautiful music and performances and support creativity and inspiration for our youngest residents. I’m grateful to the Department of Economic and Community Development for its continued investment in local arts.”
The General Operating Support for Theaters and Performing Groups funds provide general operating support grants to Connecticut-based theaters and performing groups whose primary purpose is to present the performing arts to the general public. The CT Arts Endowment Fund (CAEF) was established by the Connecticut General Assembly to stimulate the development of private sector funding and to ensure the long-term stability of Connecticut’s arts industry by providing funding to organizations. The Fund is managed by the Office of the State Treasurer and the program is administered by the Connecticut Office of the Arts (COA). Supporting Arts grants provide aid to theaters and performing groups with a primary purpose of presenting performing arts to the general public.
Organizations receiving funds included: Clinton: Opera Theater Of Connecticut – $6,537; Colchester Colchester Choir and Orchestra – $2,598, Colchester Community Theatre – $3,355, Sustain Music & Nature – $3,613; East Haddam: I-Park Foundation – $13,520; East Hampton: Epoch Arts Inc – $6,651; Essex: Cappella Cantorum Inc. – $4,104, Essex Winter Series – $3,382; Old Saybrook: Drama Works Theatre Company, Inc. – $3,085, Katharine Hepburn Cultural Arts Center, Inc – $105,403.
SENATOR MARX WELCOMES $331,010 IN DISTRICT ARTS ORGANIZATION GRANTS
SENATOR MARX WELCOMES $331,010 IN DISTRICT ARTS ORGANIZATION GRANTS
This week, State Senator Martha Marx (D-New London) welcomed the news that, in recent months, the 20th Senate District has received $331,010 in total grant funding through the Department of Economic and Community Development’s CT Arts Endowment Fund, Supporting Arts Grant and General Operating Support for Theaters and Performing Groups. Across East Lyme, New London, Old Lyme, Old Saybrook, Salem and Waterford, 21 different groups received funding ranging in value from thousands to nearly $100,000 across the three funding programs.
“Local arts help our communities thrive,” said Sen. Marx. “They’re the backbone of local entertainment, education and enrichment, not to mention the promise and opportunities they offer to youth across our state. For so many groups in our region to receive state funding supports local artists, local organizations and fosters the creative spark in our future generations. I’m grateful to the Department of Economic and Community Development for its support.”
The General Operating Support for Theaters and Performing Groups funds provide general operating support grants to Connecticut-based theaters and performing groups whose primary purpose is to present the performing arts to the general public. The CT Arts Endowment Fund (CAEF) was established by the Connecticut General Assembly to stimulate the development of private sector funding and to ensure the long-term stability of Connecticut’s arts industry by providing funding to organizations. The Fund is managed by the Office of the State Treasurer and the program is administered by the Connecticut Office of the Arts (COA). Supporting Arts grants provide aid to theaters and performing groups with a primary purpose of presenting performing arts to the general public.
Organizations receiving funds included: East Lyme: Eastern Connecticut Ballet- $4,864; New London: 7th Regiment Youth Performing Arts Organization- $12,573, Connecticut Early Music Society – $7,210, Connecticut Lyric Opera, Inc. – $14,008, Connecticut Storytelling Center – $6,040, Eastern Connecticut Symphony Orchestra – $37,182, Flock Theatre – $10,927, Garde Arts Center – $14,855, Hygenic Art Inc. – $19,877, Lyman Allyn Art Museum – $24,554, New London Community Orchestra – $3,117, New London Cultural District Commission – $6,447, Thames Valley Music School – $4,796. Writer’s Block Ink – $4,141; Old Lyme: Florence Griswold Museum – $13,424, Lyme Art Association $6,136; Old Saybrook: Drama Works Theatre Company Inc. – $3,085, Katharine Hepburn Cultural Arts Center, Inc. – $96,990; Salem: Foundation for Diversity in the Arts – $1,314; Waterford: Eugene O’Neill Theater Center – $21,255, Southeastern Connecticut Community Orchestra – $2,500
SENATE BILL 9, IMPROVING HEALTH CARE ACCESS AND FIGHTING THE OPIOID CRISIS, PASSES PUBLIC HEALTH COMMITTEE
SENATE BILL 9, IMPROVING HEALTH CARE ACCESS AND FIGHTING THE OPIOID CRISIS, PASSES PUBLIC HEALTH COMMITTEE
Today, Senate Bill 9, which is designed to enhance access to physical, mental and behavioral health care, and if passed would work to fight the impacts of the opioid and fentanyl crisis, became one step closer to becoming law as the Public Health Committee voted to advance it. The bill, which next heads to the Senate for further consideration, is one of Senate Democrats’ primary legislative priorities this year. The bill was adjusted by lawmakers before its passage Monday to remove threat of penalty for interfering with individuals receiving reproductive health care and to remove language from a pilot program creating “harm reduction centers” to ensure that project does not fall afoul of federal funding restrictions.
“Our state continues to experience challenges in ensuring equitable access to health care, an issue that we must continue to work to fight,” said State Senator Saud Anwar (D-South Windsor), Senate Chair of the Public Health Committee. “I’m proud that the Public Health Committee moved this key bill forward and that we are one step closer to better coverage across our state. This bill protects reproductive health. It establishes a pilot program and takes steps to reduce overdoses and connect those struggling with addiction with resources that can help them. It will make it easier for the field to find and retain staff. It’s a strong, valuable piece of legislature that I hope will pay dividends once made law.”
“As a Public Health Committee we remain committed to increasing access to care that is safe, effective and affordable,” said State Representative Cristin McCarthy-Vahey (D-Fairfield, Bridgeport), House Chair of the Public Health Committee. “Advocates and healthcare professionals alike have shared the importance of meeting people where they are when it comes to harm reduction and preventing deaths from opioids and substance use disorders. This bill not only increases the opportunity for harm reduction but takes other important steps to retain and increase our healthcare workforce. I commend Senator Anwar for his leadership on this legislation and look forward to working with the committee and stakeholders to pass this bill into law.”
Among the proposed changes Senate Bill 9 would make to health care systems in Connecticut:
- The Commissioner of Social Services would adjust Medicaid reimbursement criteria to provide funding for same-day access to long-acting reversible contraceptives at federally qualified health centers
- The state would establish a pilot program to establish three harm reduction centers in municipalities in the state; these centers would provide referrals to substance use disorder or other mental health services to those individuals. It would also create an advisory committee monitoring these centers.
- The Department of Mental Health and Addiction Services would develop and use an Opioid Antagonist Bulk Purchase Fund to aid municipal and organizational bulk purchases of opioid antagonists like Narcan at a discounted price.
- Opioid prescription practices would become more stringent, including prescriptions for opioid antagonists for patients at risk of abuse or overdose
- State departments would establish and administer a personal care attendant career pathway program to aid the workforce of that field.
- Medical offices could not require medical professionals to complete non-compete disclosures, which could limit an individuals’ ability to operate in that field
- The process of receiving advanced practice registered nursing licenses would be eased for qualified applicants
Sen. Hartley Welcomes FDA Action Supporting Notification and Screening for Risk of Breast Cancer
Sen. Hartley Welcomes FDA Action Supporting Notification and Screening for Risk of Breast Cancer
State Senator Joan Hartley (D-Waterbury) applauded the U.S. Food and Drug Administration updating its regulations to require mammogram providers across the United States to notify patients about the density of their breasts, which is a determining factor of risk for breast cancer and the ability to detect cancer through mammograms. This federal action to enhance screening and detection for breast cancer originates back to Connecticut, which was the first state in the nation to pass a breast density disclosure law.
Sen. Hartley championed the passage of this 2009 state law after being contacted by Joe Cappello about his wife Nancy’s battle with breast cancer. The married couple – who founded “Are You Dense,” a breast health patient advocacy organization – were invaluable partners in passage of a state law that has saved thousands of lives and encouraged other states to follow Connecticut’s lead in passing similar laws in the years after.
The FDA’s action on breast density notification for patients is coupled with new regulations to make patients more aware of how dense breast tissue affects the accuracy of mammograms and the health risks posed by breast cancer. The updated regulations are expected to be effective in all states by September 2024.
“I’m relieved that the FDA has taken these lifesaving steps on a health issue that impacts all women in Connecticut and across the United States. This new directive will lead to earlier detection of breast cancer and better empower women to work with their health care providers in determining the best actions to protect their health,” said Sen. Hartley. “I’m grateful to Nancy and Joe Cappello for working with me all those years ago to pass the first breast density disclosure law in the nation. Since then, we’ve seen that action reverberate to laws enacted in other states and now, we’ve reached this national benchmark. Countless lives will be saved thanks to the Cappello’s work along with many other advocates and breast cancer survivors that have brought us to this moment.”
These updates in public health regulations are vital to saving lives and reducing delays in diagnosis as about 1 in 8 women will develop breast cancer during their lifetimes, according to the U.S. Centers for Disease Control and Prevention. Further, according to the National Cancer Institute, almost half of all women over 40 years old have dense breast tissue, which means a higher risk for breast cancer. The higher risk for cancer associated is compounded by how dense breast tissue makes it more difficult to detect cancer through a mammogram – the best screening and detection method for breast cancer.
The $3 million in state funding would advance phase III of the Naugatuck Industrial Park project by supporting the construction of permanent and temporary access roads. Local, matching funds are envisioned for complementary actions at the site including, but not limited to demolition of remaining foundations, drainage improvements, and mass earthwork/soil management to prepare the site for construction pads.
These collective improvements would enable the ultimate redevelopment of the 86-acre site for light industrial and commercial uses, which has already piqued the attention of several interested parties. On top of spurring private investment and economic development, Naugatuck believes the fully realized regional project could create between 150-450 jobs.
The Community Investment Fund 2030 is a five-year grant program, enacted in the 2021 legislative session, dedicated to fostering economic development in communities that have been historically underserved. Eligible projects under the program include brownfield remediation, small business support programs, and infrastructure.
Dense breast tissue refers to how a patient’s breasts are more composed of fibroglandular tissue than fatty tissue. Both fibroglandular tissue and cancer appear as white on a mammogram, which makes it harder to determine the presence of cancer.
SENATOR MARX REMARKS IN STRONG SUPPORT AS HEALTH CARE SAFE STAFFING BILL PASSES PUBLIC HEALTH COMMITTEE
SENATOR MARX REMARKS IN STRONG SUPPORT AS HEALTH CARE SAFE STAFFING BILL PASSES PUBLIC HEALTH COMMITTEE
This afternoon, legislation seeking to ensure safe and adequate health care staffing passed the Public Health Committee, advancing it to further consideration in the Senate. The bill, which has been co-sponsored by a number of legislators, received comments in support on Monday from State Senator Martha Marx (D-New London), whose work as a nurse provides her with first-hand knowledge of the importance of safe health care staffing.
“For the last three years, we have called nurses working in hospitals ‘heroes.’ I can tell you, most nurses can’t stand that,” said Sen. Marx. “Nurses didn’t go into nursing to be ‘heroes;’ they went into it to be nursing advocates. The job of a nurse is to be a patient’s advocate. There isn’t actually a shortage of nurses; there’s a shortage of nurses willing to work in hospitals. Medical errors are the third-leading cause of death in the United States – as many as 251,000 people die each year from medical errors. That happens all the time in hospitals – due to overwork and lack of safe staffing.”
“Let’s talk about what patients in Connecticut deserve,” Sen. Marx said. “They deserve the absolute best care. They deserve not to die when they’re in the hospital. Their nurses deserve to be their best possible advocates. If you’re going to vote against this bill, you’re voting against nurses. You’re voting no against improving patient outcomes. I will be voting yes, and I will vote yes loudly, and I ask those who may not to visit a hospital, visit an ICU for 12 hours and see what it’s like.”
Senate Bill 1067, “An Act Concerning Adequate and Safe Health Care Staffing,” would if passed implement new nurse staffing plans by 2028 that would provide new ratios of patients to registered nurses providing direct patient care including four-to-one in emergency departments, two-to-one for patients requiring intensive care in emergency department, one-to-one for trauma patients in emergency departments and three-to-one for progressive care. Further ratios include medical-surgical, pediatric, operating room, post-anesthesia recovery, oncology, orthopedics, psychiatry, labor and delivery, postpartum, nursery and neonatal intensive care units. The ratios also include patients to assistive personnel providing patient care per corresponding patient care unit.
As well, hospitals would be required to post nurse staffing plans in visible locations in each patient care unit with accurate records held of patient-to-nurse ratios in direct care and assistive roles. If a nurse feels an assignment would violate safe staffing ratios or is not properly trained or educated to handle an activity or task, they would be allowed to object without concern of retaliation by their employer. Importantly, nurses would not be punished for declining overtime assigned less than 48 hours before a shift of more than 12 hours in a 24-hour period, immediately following their shift or more than 48 hours per week; nurses can volunteer or agree to work that overtime, and overtime will be required in instances of emergency. Hospitals will be required to make good-faith efforts to cover overtime on a voluntary basis to pre-empt the need for mandatory overtime, and mandatory overtime will not be required for nurses.
This legislation was supported in public testimony by dozens of nurses and medical professionals, many of which were submitted anonymously, with those submitting expressing concern of retaliation by their employers. “A lean staffing model was created during the COVID-19 pandemic and hospital executives have found how to make this benefit their pockets,” wrote one anonymous staffer at St. Francis Hospital in Hartford. “This is not a sustainable business model when the product delivered is your life, your husband’s life, your wife’s life, your children’s lives or your parents’ lives.”
“Throughout my years at the bedside I have encountered countless errors and misses due to the undue burden that is placed upon bedside nurses,” said another anonymous piece of testimony, written by a bedside nurse with 14 years of experience. “It’s a scary time to be a patient.”
David Pfau, a registered nurse and member of Backus Federation of Nurses, testified that when forced to work mandatory overtime, he struggled to ensure quality health care for patients – and fell asleep while driving home, nearly experiencing a serious car crash. “If you were in Backus Hospital, would you or a loved one like to be taken care of by a nurse that is exhausted… and has a much greater chance of making a mistake or missing vital change in status… because he was mandated? If the answer is no, please support SB 1067.”
BILL SEEKING BETTER OVERSIGHT, GOOD GOVERNANCE OF METROPOLITAN DISTRICT PASSED BY PLANNING AND DEVELOPMENT COMMITTEE
BILL SEEKING BETTER OVERSIGHT, GOOD GOVERNANCE OF METROPOLITAN DISTRICT PASSED BY PLANNING AND DEVELOPMENT COMMITTEE
Today, legislators in the Planning & Development Committee voted to advance legislation seeking to ensure good governance of the Metropolitan District, which provides water and sewer service to hundreds of thousands of Connecticut residents. The legislation, which seeks increased transparency and oversight of the District’s activities, was introduced by State Representative Tom Delnicki (R-South Windsor) this year; State Senator Derek Slap (D-West Hartford) is a leading co-sponsor.
“I am grateful we were able to get this bill out of committee. We now have a framework to study the Metropolitan District Commission; how they operate and govern themselves, as well as studying the role of the non-voting members of the Commission, like South Windsor, and the possibility to permit these non-voting members the ability to vote on water rates,” said Rep. Delnicki. “This is a victory for the consumers that utilize MDC water.”
“I’m grateful to the leadership of the committee for supporting this legislation,” said Sen. Slap. “I consistently hear from constituents that while they love MDC’s water and recreational areas, they are concerned with some aspects of its governance. The modest and common-sense reforms included in the bill will improve transparency, strengthen accountability, and empower its customers. I look forward to working my colleagues in the Senate to get the bill passed in the coming weeks.”
House Bill 1139, “An Act Concerning Planning and Development,” would introduce annual audits of District accounts by the Auditors of Public Accounts and establish a task force to examine the District’s organization and operations. The task force would review district charter provisions and consider the feasibility of allowing members of the district’s board of commissioners appointed from nonmember municipalities to vote on water rate approvals established by the water bureau. Additionally, by 2025, the Metropolitan District board of commissioners would be required to adopt a model code of ethics.
Similar legislation has been introduced in past years seeking for the MDC to adopt a similar ethics code as that used by Connecticut cities and towns. It comes as the MDC has received criticism in the past for large water rate hikes for consumers and volume price discounts for large corporate water users, as well as reports involving concerning legal fee billings and financial challenges facing the district; in one case, a former independent consumer advocate called a recent rate increase unsustainable and identified cost savings for the MDC that were dismissed.
Senator Moore Welcomes Funding to Klein Memorial Auditorium Foundation
Senator Moore Welcomes Funding to Klein Memorial Auditorium Foundation
Today, state Senator Marilyn Moore (D-Bridgeport) is welcoming state grants recently awarded to a local arts organization in Bridgeport through the Department of Economic Community Development Office of the Arts. In Bridgeport, the Klein Memorial Auditorium Foundation has been recently awarded funding.
“The Klein Memorial Auditorium has a long, storied history of being a local landmark and is deserving of a grant that will continue to enhance the great community events put on throughout the year,” said Sen. Moore. “I am thankful to the Department of Economic Community Development for the support of a remarkable venue that holds so many memories for several of our community members.”
The Klein Memorial Auditorium Foundation has been awarded $37,041 through the General Operating Support for Theaters and Performing Groups program. This program provides general operating support grants to Connecticut-based theaters and performing groups whose primary purpose is to present the performing arts to the general public.
The Klein Memorial Auditorium Foundation has also been awarded $1,495 through the Connecticut Arts Endowment fund (CAEF). The CAEF was established by the Connecticut General Assembly to stimulate the development of private sector funding and to ensure the long-term stability of Connecticut’s arts industry by providing funding to organizations. In November, the Klein Memorial Auditorium had been awarded $$6,148 through the Supporting Arts Program which provides general operating support to help Connecticut’s arts organizations and municipal arts departments cover programmatic costs associated with their mission-related work.
Senator Moore has been a huge supporter of the Klein Memorial Auditorium. She helped to secure $40,000 in funding in March 2022 to finish off the project of adding an elevator, building a handicapped accessible bathroom, and completing conference rooms. In 2021, Senator Moore helped to secure funding for the Klein Memorial Auditorium; a total of $600,000 to begin the installation of an elevator, technology improvements and code-required improvements.
SEN. ANWAR JOINS PATIENTS, PROVIDERS AND ADVOCATES TO HIGHLIGHT RARE DISEASE ADVISORY COUNCIL
SEN. ANWAR JOINS PATIENTS, PROVIDERS AND ADVOCATES TO HIGHLIGHT RARE DISEASE ADVISORY COUNCIL
Today, State Senator Saud Anwar (D-South Windsor), fellow legislators, and patients, caregivers, health care professionals and advocates, came together at the Legislative Office Building in Hartford to recognize the newly created Rare Disease Advisory Council at the Capitol. This year also marks the 40th anniversary of the Orphan Drug Act of 1983, which was developed to improve the development of drugs to treat rare diseases, and the event was initially scheduled for February 28, the 15th anniversary of Rare Disease Day, before inclement weather forced postponement.
Speakers today worked to raise awareness of rare diseases and the Council, including means that would provide better support including genetic testing for earlier diagnoses of illnesses in critically ill children to reduce state health care costs and to expand research on rare diseases to develop therapies and grow business in the state. They thanked members of the Legislature for creating the Rare Disease Advisory Council and thanked the Department of Public Health for 60 years of helping the community through programs including newborn screening, genetic screening for rare cancers and Sickle Cell awareness, among many other advances in monitoring, identification and treatment of rare disorders.
Speakers included Dominic Cotton, parent of a child with a rare disease; Annissa Reed, Associate Director of State Policy for the National Organization of Rare Disorders; Dr. Joann Gell, MD, research scientist at The Jackson Laboratory and pediatric hematologist-oncologist at Connecticut Children’s; Candice Flewharty and her daughter Marguerite Brown, who lives with the rare condition phenylketonuria; and James Rawlings, CEO and President of the Connecticut Chapter of the Sickle Cell Disease Association of America. Dr. Gell and Rawlings have both been appointed to the Rare Disease Advisory Council.
Gell spoke on hopes that the council can advance awareness and testing for equitable access to therapies and genomic tools like biomarker testing and rapid genome sequencing to achieve quicker diagnoses and therapies, reducing costs of care in the process; Flewharty and Brown spoke on their experiences navigating treatment for phenylketonuria, or PKU, which both Brown and her brother were diagnosed with as newborns and whose condition requires them to eat necessary medical food, which can cost significant amounts; Rawlings spoke on the need to raise awareness of conditions like Sickle cell, one of many rare diseases that impact the most vulnerable in the community.
“Millions of Americans, and countless Connecticut residents, experience the difficulty of living with rare diseases. What they all have in common is that we can do more for them, which is why I’m so glad we’re discussing the Rare Disease Advisory Council,” said Sen. Anwar. “This new council will hear directly from patients, medical professionals and advocates about best practices and how we can improve their daily lives. I’m looking forward to the advances we’ll find in coming years thanks to their hard work.”
“NORD is incredibly grateful to the coalition of lawmakers, patients, caregivers, and other members of the rare disease community who worked together to establish a permanent Rare Disease Advisory Council here in Connecticut,” said Peter L. Saltonstall, President and CEO for the National Organization for Rare Disorders. “NORD has its roots in this state – through our founder, Abbey Meyers, and our founding here nearly four decades ago. It’s incredibly empowering that Connecticut will have a permanent RDAC to help give its residents a stronger voice in their government and provide further partnership opportunities to support our rare community.”
In 2022, Connecticut lawmakers passed a law creating the Rare Disease Advisory Council at the state Capitol. This group will operate indefinitely to address the needs of the rare disease community, including giving formal recommendations to state agencies and lawmakers on public policy and health care proposals that will improve the lives of those impacted by these diseases. Connecticut became the 23rd state to have such a council in 2022.
Tuesday also featured a Legislative Breakfast at the Capitol with lawmakers and members of and advocates for the rare disease community, allowing for lawmakers to learn firsthand about the need to raise awareness of medical conditions among state agencies, the medical community and the public. Those with rare diseases seek insurance coverage for genetic testing or medical food therapy, the need for access to care including medication and therapy, the need for more specialists in Connecticut to treat these patients and the need to expand research on these diseases, among other potential advances.