“People think that because abortion is legal here and Connecticut has a lot of wealthy areas that there isn’t a need, but there is,” said co-founder Jessica Puk.
Medicaid covers abortion in Connecticut, but Puk says the fund will address a need among many marginalized groups, including undocumented women, low-income people who earn too much to be covered by Medicaid, and those who have private insurance with a high deductible or copay costs.
“These are real people who need to access real health care and are hitting real barriers to it,” she said.
Jessica Puk
Puk and three other women began organizing the fund in the summer of 2021. They launched a fundraising campaign in June 2022, just one week before the Supreme Court opened the way for states to ban abortion with the Dobbs decision that overturned the landmark Roe v. Wade, which had provided a constitutional right to an abortion.
That timing energized donors, who gave more than $13,000 the following month.
While donations moderated somewhat after that initial burst, the fund gained steady support and made its $50,000 goal in just over four months. Puk says 95% of the money has come from small, individual donations and collective efforts. A tattoo parlor in Southington raised $4,000, and REACH received another significant gift from a Unitarian congregation in New London.
Hitting the goal has allowed the fund to begin making block grants to abortion providers as of Nov. 1. Puk said the amount of the monthly grants to the clinics will fluctuate based on revenue, cash flow, and the needs of patients. She would not provide specific grant amounts.
Unlike most abortion funds, REACH will not deal directly with patients. Instead, it is disbursing money to the 14 clinics that Planned Parenthood of Southern New England operates within Connecticut and the state’s one independent clinic, the Hartford GYN Center in Bloomfield.
The clinics have the discretion to award money to patients who come to them in financial need.
Roxanne Sutocky, director of community engagement for The Women’s Centers, which runs the Hartford GYN Center, says that’s an important model because patients can access care and financial help with one phone call.
“The individuals who are working with the patients to schedule them, to do their financial counseling, can use discretion about how much of those funds each patient might need,” she said. “Or people who come into the office and scan further than they expected and their cost of care has increased – it means not having to go home. When the patient is in front of us, oftentimes that’s when we’re figuring out unexpected financial consequences.”
Sutocky says the money can be used for patients traveling to Connecticut from states where abortion is banned.
“We’re seeing more people incurring higher costs due to travel, and delays in accessing their services increasing the cost because they’re seeking more advanced abortion services,” she said. “People are needing to access multiple funds, many times.”
Abortion care has been described in one study as a “catastrophic health expenditure” for many households. Costs vary depending on the procedure and the location. Last year the median costs nationally for people paying out of pocket in the first trimester were $568 for a medication abortion and $625 for a procedural abortion, according to the Kaiser Family Foundation.
Operating on the block grant model also makes things simpler for the REACH Fund, which does not need to staff an emergency hotline as many other abortion funds do.
“Another reason that has become more important in this age of digital security is that by not having an intake process on our end, we don’t hold any patient information,” Puk said. “It’s just one less place that a patient would need to give their personal information and worry about the safety and security of it.”
For Puk, reaching the milestone of beginning to fund abortions in the state is personally meaningful. She had a second-trimester abortion six years ago for what she says was a very wanted pregnancy that became unviable.
“I was incredibly lucky in that I hit no roadblocks when I needed access to abortion,” she said. “And my abortion experience changed the way I think about community, the way I think about society, the way I think about how we show up for each other. You shouldn’t have to be lucky to get the care you need.”
]]>It was another four months before Lombardi, 61, learned the cause of her pain, received effective treatment and returned to active exercise. She considers herself lucky because many women with heart disease never get an accurate diagnosis.
Standard medical testing for heart disease is based on research on men, whose chest pains are primarily attributed to blockages in major arteries, according to Dr. Samit Shah, an interventional cardiologist at Yale New Haven Hospital. But women often have heart disease that isn’t caused by such blockages, and their symptoms may not even include chest pains, said Shah, who ultimately diagnosed Lombardi.
Melanie Stengel Photo.
Karen Lombardi takes her dog, Peppa, on daily walks and hikes on weekends. She considers herself lucky because many women with heart disease never get an accurate diagnosis.
Shah is trying to transform the diagnosis of women’s heart disease by doing testing that goes beyond the usual practice of looking for blockages. He is about to embark on research with nine other hospitals in the country that will aim to standardize the expanded testing. It will also track resultant diagnoses and the effects on quality of life from receiving an accurate diagnosis, being believed about pain, and getting appropriate treatment.
“Very few hospitals are doing this type of testing,” Shah said, explaining that the result is that women are often sent home without diagnoses and told that their pain isn’t real. Sometimes they’re bounced around to different specialists because of symptoms such as stomach and jaw pain that end up being heart-related, he said.
Yale New Haven doctors presented a paper in April to the American College of Cardiology reporting a median time of more than six years between the onset of symptoms and a correct diagnosis for 64 patients without blockages who they ultimately tested with the expanded procedure. The patients were comprised of 48 women and 16 men.
“Obviously, if they’re not treated, there can be greater consequences,” Shah said. Heart disease is the number one killer of women and men in the United States.
In 2020, one in five female deaths in the country were due to heart disease, according to the Centers for Disease Control and Prevention (CDC). It is the leading cause of death in white and black women, second after cancer for Hispanic and Pacific Islander women, and tied with cancer in American Indian and Alaskan Native women, the CDC reports.
“Medicine, in general, is so biased in taking care of men that we overlook something that can be right in front of us,” Shah said. “Women are not believed about pain after surgery. Women who are having heart attacks—it takes longer for providers to see them and longer for a heart attack to be recognized,” he said.
Shah said that at least half of the women he has treated for heart disease don’t have blockages. And, in 90% of those without blockages, the culprit is a failure of small blood vessels to move blood to the heart, he said. The two prevalent conditions with this issue are coronary microvascular disease and coronary vasospasm.
Shah’s testing starts with an invasive angiogram, also called catheterization, which reveals major blockages. When he doesn’t see those, he continues testing by injecting medicine that helps him investigate small heart vessels, which carry most of the heart’s blood supply.
Shah found that Lombardi’s heart disease is caused by vasospasm, which means her small vessels shut down and prevent blood flow. She said that knowing the cause of her heart disease and being properly treated has eliminated her chest pains and changed her life.
After her initial trip to the hospital, she was prescribed nitroglycerine, blood pressure medicine and a blood thinner. A tiny blockage picked up on her angiogram didn’t jibe with the pain she was reporting. However, no further testing was done, and she felt she was treated with a dismissive attitude of “it’s not a major blockage. What are you complaining about,” she said.
She lived in fear of having another heart attack.
Yale School of Medicine Photo.
Dr. Samit Shah said at least half of the women he has treated for heart disease don’t have blockages.
Following Shah’s diagnosis, the blood thinner, which caused significant bruising, was eliminated, as was the prescribed blood pressure medicine. Lombardi now takes a medication called amlodipine and has a nitroglycerine patch to wear as a preventive measure when she is particularly active. Her previous nitroglycerine prescription was taken orally after chest pains, which were becoming increasingly frequent.
Now retired from the New Haven school system, Lombardi and her husband walk 2 to 3 miles daily and hike on weekends near their East Haddam home. It’s a far cry from the five-minute walks she haltingly attempted after her first diagnosis. “Anything strenuous, I would start to feel my chest tightening and my heart pound,” she said.
Now, she said, “I feel I can go out and do things and not be afraid.” She added, “I don’t think of myself as a patient anymore. I think of myself as having a condition I can manage with medication.”
Carolyn Mazure, director of Women’s Health Research at Yale School of Medicine, said her center helps fund Dr. Shah’s research to raise awareness of women’s heart disease and improve health outcomes. Just 56% of American women know that heart disease is the number one cause of death in the country, according to the CDC.
“We want women to be informed about that,” Mazure said. “We want the diagnostic procedures ready and the treatment ready to really deal with this disorder. The bottom line for our work is that women have stronger and healthier lives.”
The Federal Food and Drug Administration and Abbott Vascular, a medical device company, are the other funders of the research, Shah said.
Mazure pointed out that it wasn’t until the mid-1990s that the National Institutes of Health, which she called “the single greatest funder of biomedical research in the world,” started requiring the inclusion of women in clinical studies. “It wasn’t until 2000 that we started to see studies actually designed for women” beyond reproductive health, she said.
A study published in the Journal of the American Heart Association last March concluded that greater awareness of heart disease without the presence of blockages “is urgently needed for accurate diagnosis and patient-tailored management.” It called for refinement and standardization of diagnostic tools, which Shah’s national research seeks. And it found that when patients learn the cause of their pain and are treated for it, their quality of life is positively affected. It added that identifying microvascular disease or vasospasm prevents patients from undergoing repeated invasive tests and potentially reduces health care costs.
Lombardi lamented that other women don’t have the opportunity of expanded testing that she received from Shah. When she went to the hospital with a second episode of chest pains, the cardiologist on call suggested that she undergo Shah’s extended testing.
“It shouldn’t be luck that determines whether women get diagnosed correctly or not,” Lombardi said. “Understanding the differences in women’s heart disease versus men’s needs to be widespread.”
]]>“I had someone say they put it in their bedside table and it is loaded,” said Taylor, a family practitioner with Trinity Health New England. “So, I said, ‘Maybe that’s not a great idea. If you don’t have a safe, at least keep the gun in one place and the bullets in another.’” Her patient promised to consider making a change.
Questions about safe gun storage don’t pop up at every annual physical or well visit. Studies suggest that only a quarter of family physicians regularly discuss gun safety with their patients.
iStock Photo.
Two UConn researchers are studying why doctors don’t routinely ask their patients about safe gun storage in their homes.
Despite having some of the strictest gun control laws in the country, Connecticut is enduring high levels of gun violence, with more than 60 deaths in the first six months of 2022.
Across the nation, with more than 300 mass shootings this year, gun fatalities remain a leading cause of premature death. In 2020, 45,222 people in the U.S. died of gun-related injuries, with suicides accounting for more than half of those deaths, the Centers for Disease Control and Prevention reports.
A new study by two University of Connecticut researchers aims to find out why doctors aren’t routinely addressing this serious public health problem.
“We looked at why they don’t include firearm security or safety conversations as part of what we call anticipatory guidance,” said Jennifer Necci Dineen, an associate professor in residence at the School of Public Policy at the University of Connecticut, referring to when doctors ask about things like cancer screenings and whether a patient uses a seatbelt.
Study Seeks Ways To Reduce Gun Violence
Dineen and co-researcher Kerri Raissian, an associate professor, did a qualitative survey of 18 family physicians in 18 states, including Connecticut. Most physicians surveyed did not ask about gun safety as a primary question but were apt to bring it up if another answer prompted the inquiry.
Jennifer Necci Dineen, Associate Professor in Residence, UConn.
“So, if I screen in for depression, for example, they may ask me if we have guns in our house,” Dineen said. “If I express concern about my partner or, let’s say, one of my children is violent, and I talk to my physician about that, they may ask me if I have guns in the house. But they rarely will bring that up proactively.”
The research is part of UConn’s ARMS Center (Advancing Research, Methods, and Scholarship for Gun Injury Prevention), which connects scholars, advocates, and policymakers in seeking ways to reduce all forms of gun violence.
The researchers selected nine states that have laws regarding gun storage in the home and nine that do not, aiming to determine whether the legal and political framework of the state influenced the physicians’ decisions. In Connecticut, Ethan’s Law on safe gun storage was passed in 2019. The legislation is named for 15-year-old Ethan Song from Guilford, who died from an accidental shooting in a neighbor’s home where there were unsecured firearms.
Doctors’ broaching the topic of guns has been a political minefield in the past. In 2011, Florida passed a law that forbade physicians from asking about firearm ownership. After a series of appeals, a 2017 ruling found that the statute infringed on doctors’ First Amendment rights.
Florida is not the only state to attempt so-called “gag” laws. Similar, though less restrictive, laws have been passed in Minnesota, Montana and Missouri.
But to the researchers’ surprise, the political climate of the physicians’ home state didn’t seem to be the deciding factor. And doctors’ comfort level with the topic was only part of the picture. Instead, the most significant barrier turned out to be time.
“While we had suspected that a lot of it had to do with comfort or political context,” Dineen said, “what we’re hearing is it has more to do with time pressure and the fact that there’s more to talk about now than there ever was before.”
Add to that time pressure the fact that many conversations at wellness appointments are guided by a form provided by the doctor’s electronic medical record system.
“These electronic medical records are prepackaged and purchased,” Dineen said. “They tend to come with a standard set of items. Some of those items are driven by what’s covered by insurance in many cases.”
UConn Photo.
Kerri Raissian, Associate Professor, UConn.
Dineen and Raissian are at the early stages of their research. They are writing a paper on their 18-state survey and hope to get funding to expand their research to include pediatricians and OB-GYNs.
They hope their research will inform how electronic medical records are compiled so that gun safety questions become a routine part of wellness appointments.
Gun Safety Taught To Medical Students
Dr. Adam Weinstein, associate professor of medical sciences and pediatrics at Quinnipiac’s Netter School of Medicine, says all medical students should be introduced to the idea of asking about safe gun storage as part of their training.
“We introduce this in September of the first year of medical school in a session where we introduce them to health maintenance visits for children and adults,” he said. “Gun safety is introduced as one part of this more comprehensive whole with regards to health promotion and disease prevention.”
Most students will also see the principle in practice as they observe health maintenance visits with a preceptor who is a family medicine practitioner and then again in their third year as they participate on the care team.
“It’s a truly experiential learning,” he said, “though the experience is not specific to gun safety and storage counseling. Rather it’s done in the context of and part of the full comprehensive health maintenance visit.”
Trinity Health Photo.
Dr. Stacy J. Taylor of Trinity Health.
Taylor, who, in addition to being a family physician, is a member of the board of directors of the Connecticut State Medical Society, agrees that the question is also one of training.
“I do have students in my practice, and I teach them how to ask that question before they go in and ask it for the very first time,” she said. “If you just say to someone, ‘Do you own guns?’ that comes across as confrontational.”
Taylor said the better question is: If you own a gun, is it stored safely? “You are implying that you care about the storage, not the gun ownership,” she said.
“It’s a fine line between the patient perceiving you’re challenging them versus helping them.”
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If women came in with complications after a miscarriage or a self-induced abortion, they had to wear a marked shirt and sit in a special area of the obstetric emergency department, where Love worked.
“The trauma and the stigma,” she said, “I never thought that we would be moving to where our patients would experience that same sense of fear and shame. It’s terrible. It just breaks my heart.
Love, who now works at Planned Parenthood of Southern New England (PPSNE), says for her, the potential end of the federal right to abortion care is a scary prospect. It may come within weeks if the U.S. Supreme Court issues a version of the majority opinion in the Mississippi abortion case Dobbs v. Jackson that was leaked in May.
The 1973 Roe v. Wade court decision affirmed the right to receive an abortion under the 14th Amendment, ruling that abortions are constitutionally protected until about 23 weeks, when a fetus could live outside the womb. Last year, the Supreme Court agreed to hear a challenge to Mississippi’s 15-week abortion ban in Dobbs v. Jackson, setting the court up to examine decades of precedent set by Roe.
“It’s really disheartening to be living through this, but I feel really proud to be on the front lines of doing this work,” Love said. “And I’ve never in my life been prouder to work at Planned Parenthood or be an abortion provider.”
Love and her fellow clinicians at Planned Parenthood’s 14 clinics in Connecticut are also preparing for the moment.
“If Roe falls and then all of these trigger bans go into effect, I think it’s going to be pretty swift that patients are going to be left without access in their home state,” said physician assistant Amina Carter, referring to the states where legislators have passed so-called “trigger laws” restricting abortion almost immediately if Roe is overturned. “And so, it’s going to be up to places like Connecticut and other safe harbor states to open our doors and open access to folks who are seeking care.”
“An abortion ban is going to disproportionately affect women of color. I think we’re going to see a big impact, a negative impact on Black maternal health. We’re going to see maternal mortality skyrocket, I think, as these bans go into place.”
— Amina Carter, Planned Parenthood physician assistant
The clinics have already seen people traveling from Texas since that state banned abortion after six weeks of pregnancy. Zari Watkins, PPSNE’s chief operating officer, says that so far, the number is low, probably fewer than 10. But she said the organization’s affiliate in Oklahoma had been experiencing a 2,500% increase in visitors since the Texas restriction was enacted. Now, Oklahoma’s recent ban will result in those patients seeking care elsewhere.
“We’re currently working to make sure we can provide seamless abortion navigation for patients coming from out of state,” said Watkins. “It wasn’t something that happened often before, so we never really had to make sure that we had a formal structure and workflow in place.”
That could mean connecting a patient with financial resources from an abortion fund, arranging travel and lodging, or ensuring they can get a timely appointment.
The clinics are preparing by improving their online scheduling platform. They’re also seeing what they could do for women for whom travel is not an option.
PPSNE Photo.
Zari Watkins, PPSNE’s chief operating officer, said that she wants to make sure patients know their “doors are open.”
“We have been working with our lobbyists and attorneys to understand what the next steps are to put medication abortion in place via telehealth,” Watkins said.
Telehealth As A Tool
Telehealth is also an outreach method considered by the Hartford GYN Center, Connecticut’s only independent abortion clinic. Hartford GYN is part of The Women’s Centers, a multistate network that includes clinics in New Jersey, Pennsylvania and Georgia, among other states.
“We’re just thinking of creative ways to see as many people as we can to meet the demand,” said Dr. Lisa Perriera, chief medical director of The Women’s Centers. That may include getting physicians in states like Connecticut licensed to practice in states with abortion bans so that they can provide a telehealth visit and medication for abortion by mail.
“It’s still up in the air,” she said. “Telehealth law varies state by state. Most of the time, if you were doing a telehealth visit, the doctor or the clinician has to be licensed in the state that the patient is sitting in during the telehealth visit.”
Because of its network, The Women’s Centers already has a good deal of experience with women traveling across state lines for care.
“We have a centralized appointment center,” Perriera explained. “The patients call in, and we figure out what center is closest to them, what their resources are. Some of the locations have patient support networks where folks will help them sleep on couches or drive them to the clinic.”
She expects the network of support for travel to be tested in the coming months as the ripple effect of abortion bans widens to states like Connecticut.
“New York is a centralized location where people can fly in and out,” she said. “People from Texas may fly to New York to get their abortions. People that live in New York won’t have as much access to abortion, so they might go to Connecticut, which is close.”
Physician Shortage
Women up to 11 weeks pregnant can be offered a medication abortion, which can be managed at home. That accounts for the majority of procedures in Connecticut. Of people who sought treatment from Planned Parenthood facilities in Connecticut in the 12 months up to July of last year, 67% were provided medication abortions.
The remaining 33% would have seen a physician for an in-clinic procedure, which can cause delays in care.
Harriet Jones Photo.
People gathered in cities and town across Connecticut and nationally in support of Roe v. Wade last month. The crowd in New London rallied at Parade Plaza and marched to the courthouse.
Planned Parenthood’s Carter said physicians are “really stretched thin,” which sometimes leads to patients having to travel to another clinic or wait a week before they can have the procedure.
“So, it’s just an additional delay, additional transportation for our patients,” she said. “Another day that they have to take off and find childcare. It puts a lot of burden on that patient.”
The shortage of clinicians available for in-clinic procedures in Connecticut should ease just as demand from other states is expected to rise. Connecticut’s new law aimed at widening abortion access goes into effect on July 1. Love and Carter are among the clinicians who will undergo training to provide aspiration abortions at the clinics where they provide health care. Under the legislation, advanced practice registered nurses (APRNs), nurse-midwives and physician assistants will be eligible for the training. PPSNE says of its current staff, 60 people could potentially complete the training.
“We’re already safely providing plenty of other procedures, like IUD inserts, colposcopies,” said APRN Colleen Taylor, “and a first-trimester aspiration abortion is another part of health care that we can safely provide and should be safely providing.”
The new law will also protect patients who travel to Connecticut for abortions and shield Connecticut providers from being prosecuted in states from which patients have traveled.
The potential end of federal protections under Roe has sparked many emotions for the people who work most closely in this field.
“Honestly, for me, it’s raised anger that everybody else that’s not in this work is so surprised,” Perriera said. “I knew in my heart of hearts, even though I didn’t want to believe that it was true, that the Supreme Court was going to go this way. We’ve been planning for this, and the fact that everybody else is so outraged is sort of infuriating.”
“I feel a sense of urgency,” Watkins said. “I want to make sure that patients understand that our doors are open, we are here for them, and we will continue to work to find ways to meet the patients where they are.”
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But while there are dramatic successes with immunotherapy drugs, there are also many failures, and researchers are trying to find out why in hopes of expanding the drugs’ effectiveness.
Cutting-edge immunotherapy drugs use a person’s own immune system to fight disease. The Food and Drug Administration (FDA) first approved the drugs in 2011 for cancer treatment. Success has occurred in about 15% to 20% of patients with cancers such as melanoma, lung, kidney and bladder, according to a report by Johns Hopkins School of Medicine.
But for breast cancer, there is just one drug—Keytruda—that has approval to treat triple-negative breast cancer, the most aggressive type. It must be administered in conjunction with chemotherapy.
Dr. Maryam Lustberg, director of the Yale Breast Center at Smilow Cancer Hospital, said that in one trial, the survival rate of patients with early stage triple-negative breast cancer increased from 16 months with just chemotherapy to 23 months with chemo combined with Keytruda.
Dr. Maryam Lustberg
“So, while the numbers may appear small,” she said, “it is something that is incredible. We have had no advances in this type of breast cancer for so long.” Triple-negative cancer accounts for 15% to 20% of all breast cancers and is the deadliest type if untreated, she said.
Other immunotherapy drugs not yet approved by the FDA are given to patients in breast cancer clinical trials, which is how Mills and Witz received theirs. Mills was in a trial in 2017, and Witz’s trial started last August. Both were diagnosed with triple-negative breast cancer.
Diversifying Breast Cancer Trials
Mills discovered a lump in her breast on her 34th birthday at a fitting for her wedding gown. “I had to survive,” she said, noting that she and her husband have four children in their blended family. She started treatment a week after her honeymoon.
As a Black woman, Mills said, she believes she wouldn’t have been offered a trial if she didn’t live in the New Haven area.
Dr. Andrea Silber, Mills’ oncologist at Yale, prioritizes diversifying breast cancer trials to include more people of color and other underserved groups such as non-English-speaking patients, uninsured and underinsured people, and people with additional illnesses.
Dr. Andrea Silber
“Traditionally, clinical trials often have people who are the healthiest, sometimes the wealthiest, with the best access,” Silber said. “It’s really about health equity, making sure everyone who’s diagnosed with cancer has the same chance to get better.” Silber is associate clinical director for diversity and health equity at Yale Cancer Center, which encompasses Smilow and Yale School of Medicine.
Lustberg said studies are being conducted nationally on barriers to clinical trial participation, including whether providers “have unconscious biases” that cause Black patients to be excluded from trials.
“We believe the best care is given in clinical trials. Patients are carefully observed, they have access to the latest drugs, and most eyes are on them,” said Lustberg, who is also chief of breast medical oncology at the Yale Cancer Center.
Dr. Alvaro Menendez, an oncologist and hematologist at Hartford HealthCare Cancer Institute, is among those researching racial disparities in cancer care. To improve access to timely detection, Hartford HealthCare and Yale New Haven Health bring mobile mammogram vans to underserved communities.
A higher rate of Black women die from breast cancer, according to the Centers for Disease Control and Prevention (CDC). In Connecticut in 2018, 24.6 out of every 100,000 Black women died of breast cancer compared to 15.8 out of every 100,000 white women, according to the CDC’s recent age-adjusted statistics.
New breast cancer cases reported in Connecticut in 2018 totaled 122.5 per 100,000 Black women and 136.4 per 100,000 white women, the CDC statistics show.
Nationally, in 2018, for every 100,000 Black women, 27 died of breast cancer with new cases reported in 121, according to the CDC. For every 100,000 white women, 19 died of breast cancer that year while 128 new cases were detected, the CDC reports.
In addition, Black women have nearly three times the risk of triple-negative breast cancer than white women, according to a study led by the University of Pennsylvania’s Perelman School of Medicine.
Age is another factor in immunotherapy clinical trials. The participation of Witz, at 68, was unusual even though cancer disproportionately affects older people, Silber said. “If you’re testing a drug on a 40-year-old, you have no idea what adverse side effects would be in an older group,” she said.
Witz grabbed the opportunity. “I had no choice. We’re talking about death here,” she said. “Just give me my life,” she told Silber.
Side Effects, Financial Barriers
Before her diagnosis last Memorial Day weekend, Witz was a substitute teacher, Eucharistic minister, comedian, swimmer, and a former clown. She was diagnosed after seeking medical help for acute chest pains and indigestion-like discomfort.
Melanie Stengel Photo.
Nancy Witz welcomed the opportunity to participate in a clinical trial. “I had no choice. We’re talking about death here,” she said. Witz was photographed in Edgerton Park, New Haven, after her radiation treatment.
In her 12-week immunotherapy/chemotherapy regimen, constipation was her only side effect, she said. She also had a lumpectomy and 23 radiation sessions. Plans for additional chemotherapy were scrapped because of her good outcome, Silber said.
But Mills had serious side effects from her 2017 treatments, including blood clots in a carotid artery and a pulmonary embolism. She had so much trouble breathing that she couldn’t walk more than a few steps. She was hospitalized, and her cancer treatment was suspended. She also had a full-body rash, and her tongue turned purple. More than four years later, some of her fingernails and toenails still fall off. Because a gene mutation predisposes her to cancer, she also had a double mastectomy and hysterectomy.
Dr. Steve Lo
Dr. Steve Lo of Stamford Health’s Bennett Cancer Center explained that side effects are significant in about 10% of immunotherapy patients. He said they occur when immunotherapy medicine attacks non-cancerous cells. He cited cases where the lungs or gastrointestinal tract are affected.
“You can have people who can’t breathe and need oxygen or have diarrhea 10 or 20 times a day,” said Lo, the center’s medical director of medical oncology. “People can die from those complications,” he added.
Lustberg said there needs to be a way to “give it more safely,” adding, “We are absolutely watching patients very carefully.”
Another issue is cost, which runs about $12,000 per dose, she said. Mills and Witz weren’t charged for the immunotherapy meds in their trials but were responsible for other costs, including chemotherapy and surgery. Mills said she is still paying off more than $6,000 in co-payments not covered by insurance.
Patients prescribed immunotherapy have big bills if they have high deductibles, Lo said. “Deductibles can be anywhere from $3,000 to $10,000, and with these drugs, you go through your deductibles,” he said.
When immunotherapy works, it’s “very exciting,” said Dr. Patricia A. DeFusco, medical director of the Hartford HealthCare Cancer Institute Breast Program. “You want to cure these people,” she said. Since Keytruda was approved, she has had two patients whose tumors disappeared after using it, which she called “phenomenal.”
“Over time, we’ll see if the responses are durable, that these cancers don’t reoccur,” she said.
Lo called immunotherapy quirky. While he has had successes with it, he said, he has also had patients for whom it does not work.
“That’s why we need to do very active research and why we need patients’ help” in clinical trials,” he said.
]]>English was all smiles, hearing her baby’s heartbeat for the first time.
After English’s first three children were born in a hospital, she had her fourth child at home in 2020, attended by Greenfield, a certified professional midwife. She wants the same experience for this baby due next March. While she says she had always been interested in giving birth at home, it was COVID-19 that sealed the deal for her.
“The pandemic definitely solidified that I wanted to do a home birth,” she said. “I didn’t want all the new interventions that come with the pandemic.”
In 2019, out of a total of 34,258 births in Connecticut, 217 took place at home, according to a National Vital Statistics report issued by the Centers for Disease Control and Prevention (CDC). That proportion of home births had remained unchanged at around 0.6% of all deliveries in the state since at least 2013.
But in 2020, while the overall number of births declined slightly to 33,460, 271 women in Connecticut gave birth at home, or 0.8% of all deliveries, marking a 29% relative increase over the previous year.
That increase was mirrored nationally. According to the CDC, there were 45,646 home births across the U.S. in 2020, compared with 38,506 in 2019, an increase of 22%. The percentage of home births in the U.S. rose from 1.03% in 2019 to 1.26% in 2020. That marked the highest level since at least 1990.
Many women, like English, cite hospital restrictions imposed during the height of the pandemic, such as who can attend a live birth and who can visit, as reasons for choosing a home birth rather than a hospital birth.
Melanie Stengel Photo.
Midwife Carolyn Greenfield with her client Cameron English who is expecting her fifth child. English holds Iyami who was born at home. Iyami’s siblings are Msanii, 5, (left) and Amini, 3.
English said the home birth lived up to her expectations. “It was beautiful. I absolutely loved my experience. It was so peaceful before, during and after,” she said.
A study published in May analyzed internet search data and found a 239% increase across the U.S. in relative search volumes for information on home birth since the beginning of the pandemic. The highest volume of searches occurred between March and May 2020 as the first wave of coronavirus peaked.
Birthing Center Saw Influx Too
Cathy Parisi, midwife director of the Connecticut Childbirth & Women’s Center in Danbury, said the facility historically averages around 100 births a year. But in 2021, they are on track to deliver 140 babies, making it the busiest year in the center’s history, she said.
The center experienced an influx of mothers looking for an alternative to a hospital birth around March 2020. That’s when hospitals in New York imposed restrictions on visitations and did not allow partners in delivery rooms due to COVID-19.
Cathy Parisi, midwife director, Connecticut Childbirth & Women’s Center.
“They got dropped off at the door to have their baby— I mean, that’s asinine!” Parisi said. “It didn’t last for very long, but it had a significant effect, I think, on how women were looking at institutions and health care providers and wondering what was really going to be able to work well for them.”
In Connecticut, hospitals initially imposed some restrictions allowing just one support person during a birth.
At the Danbury facility, only certified nurse midwives attend to women, and neither induction nor epidurals are offered. Women can labor in water and are offered massage. Typically, they can go home between four and six hours after delivery.
Parisi describes the center as a great option for those women who don’t want to be at home but do want a similar experience in a more controlled setting. “We have women who had a birth experience in the hospital who just felt that they would feel safer in a birth center,” she said. “They would feel safer not going into a hospital.”
Amy Walfish was one of them. She lives in Manhattan, and she had her first child at Mount Sinai West. She was halfway through her second pregnancy when the pandemic hit.
“I think everybody just started scrambling,” Walfish said. “It was definitely a lot of late-night talks with my husband about what is our Plan B here.”
Walfish said she thoroughly researched home birth, including attending an informational Zoom session organized by the NYC Homebirth Collective, but decided, in the end, it was not for her. Then she remembered a high school friend who had recommended the Connecticut Birthing Center.
“I called up, made an appointment. There was no friction. The birthing center just felt like such a safer option,” she said.
Recent research has discussed whether the pandemic will lead to a change in maternity care practices and protocols. In one article published in Medical Anthropology, the authors conclude that “COVID-19 is stimulating debates about the efficacy of maternity care, the safety of hospital versus out-of-hospital births, and the lack of integration of midwives in the U.S. healthcare system.”
Melanie Stengel Photo.
Carolyn Greenfield’s 2019 Hyundai now has more than 67,000 miles due to home visits.
At the start of the pandemic, the Foundation for the Advancement of Midwifery (FAM) issued a statement saying that midwives should be treated as care providers, reimbursed for midwifery care at 100% of the rate of physicians for the same service, whether from insurance or Medicaid.
For midwife Carolyn Greenfield, the prenatal consultation with Cameron English was something of a milestone because it was the first visit in her new office in Rocky Hill. Previously, Greenfield ran her midwifery practice exclusively out of her car.
Greenfield began her business in September of 2019. In the next four months, she had just one mother to care for.
Then came March 2020, and everything changed.
“I remember telling my husband, do you know what this means?” Greenfield said, recalling the announcement of a statewide lockdown in response to the coronavirus pandemic.
“My phone started ringing off the hook,” she said. From March 2020 to November of 2021, she attended 36 births in homes across Connecticut and Massachusetts.
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For the 23-year-old house cleaner, postponing medical appointments became necessary when the COVID-19 crisis affected childcare for her 2-year-old son.
“I would have to not go to my appointments sometimes because I didn’t have childcare,” she said. “When COVID struck, that’s when daycare became less reliable.” If her son sneezed or had a runny nose, daycare would not accept him, Vasquez explained.
More women than men have either missed medical appointments or postponed the care they thought they needed during the height of the pandemic, according to a recent DataHaven survey released in October of more than 5,000 randomly selected state residents.
The 2021 Community Wellbeing Survey found that 12% of women didn’t get the health care they needed in the last year, compared to 10% of men. Similarly, 34% of women postponed the medical care they thought they needed during the same time frame, while just 26% of men reported putting off care.
The numbers are higher than those reported in the 2018 community wellness survey, which found that 9% of women and men skipped medical care. More women than men, however, postponed the medical care they thought they needed, at 26% versus 20%.
“We as women tend to get everybody else taken care of and tend to neglect ourselves.”
— Cara Westcott, chief operating officer,
UCFS operates five health care centers in eastern Connecticut. The higher numbers make sense, she added, as the pandemic brought increased childcare responsibilities and remote learning challenges often shouldered by women.
Nationally, Hispanic women have been disproportionately affected when it comes to accessing medical care, according to a women’s health survey by the Kaiser Family Foundation, which found that 40% of Hispanic women skipped preventive health services and 25% skipped a recommended medical test or treatment.
The report by DataHaven, a nonprofit, also found that Latinos and low-income adults are less likely to have insurance and more likely to skip or delay medical care.
Between May 24 and August 30, 2021, 32% of women with no health insurance said they didn’t get the health care they needed in the past 12 months, compared with 25% of uninsured men, the survey found. When it came to putting off medical care, 51% of uninsured women postponed getting the care they thought they needed, compared with just 38% of uninsured men.
At UCFS, Westcott said she saw a 25% decrease in the number of patients seen in 2020 among all populations compared with previous years.
“We saw a drop off in the number of unique patients seen from calendar year 2019 to calendar year 2020 of about 5,000 patients,” she said, “and we attribute that to people forgoing care during the pandemic, even though we did offer telehealth appointments.”
Fluctuating employment and health insurance status also played a role, she said.
The DataHaven survey, done in conjunction with the Siena College Research Institute, found that 24% of respondents reported losing a job in the past year.
UCFS, which offers medical, dental and behavioral health services, saw 20,000 unique patients each year pre-pandemic, according to Westcott. At the end of 2020,15,000 patients had been seen.
“When we started seeing those numbers dip, we put together strategies and work plans to get them back in,” she said, including launching social media and radio marketing campaigns. “Since the beginning of this year, we’ve been making a concerted effort to contact those patients we didn’t see in 2020 to get them back to care.”
Women who were forced to miss routine screening appointments like mammograms and Pap smears last year due to pandemic precautions in health care offices have all had the opportunity now to be seen, said Dr. Mark Silvestri, chief medical officer of medical and dental services at the New Haven-based Cornell Scott Hill Health Center.
“I definitely think our ability to provide telehealth services made health care accessible to women who were at home because of childcare reasons,” he said, “but for some health care needs, telehealth care is not suitable.”
Screening appointments scheduled for March to June 2020, when patients weren’t being seen in person, were rescheduled to a later date, he said.
“We kept track of all the women we were postponing at that time and immediately got them back in,” Silvestri said. The backlog in routine screening appointments evened out between late 2020 and early 2021, he added.
Vasquez was one of the women who missed her annual Pap test last year due to pandemic precautions. However, she rescheduled her appointment to nearly a year later and was seen in March 2021.
Little by little, Westcott said, she is starting to see more patients returning to health care. At the end of October, UCFS had seen 15,654 unique patients during the previous 12 months.
“We are making progress,” she said, “but it’s slow progress.”
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Now 21, Plebanek is considering a more convenient method of birth control. Seeking advice from a gynecologist about her options, she was handed a brochure. “I felt that I wasn’t really informed about my options,” Plebanek said.
Plebanek is not alone in being proactive about her birth control options. The majority of women in their childbearing years—65% of the nation’s females ages 15 to 49—use some form of contraception, according to recent data from the Centers for Disease Control and Prevention (CDC).
Planned Parenthood of Southern New England Photo.
Amina Carter, a physician assistant and health center manager at Planned Parenthood of Southern New England, said that it’s “our job to make birth control counseling” comprehensive.
In recent years, there’s been a significant rise in the usage of some contraceptive methods and a decline in others. Female sterilization remains the most popular form of contraception, but its use has steadily declined since the 1970s. The pill remains the second most common contraceptive method, but long-acting reversible contraceptives (LARCs) are gaining traction as a close third.
Despite personal investment in their health and the birth control they choose, women don’t always receive the information they need to make smart, informed decisions.
A 2020 Kaiser Family Foundation women’s health survey reported that only four in 10 women (44%) age 18 to 49 rate their contraceptive care provider as excellent in four areas of contraceptive counseling. The study says only 36% of Black women and 38% of Hispanic women received excellent counseling, compared with 49% of white women. And, low-income and uninsured women were less likely to say that they received excellent care.
The contraceptive counseling areas included: respecting them as a person, letting them say what mattered, taking their preferences about birth control seriously, and giving them enough information to make an informed decision.
Dr. Aileen Gariepy, associate professor of OB/GYN & Reproductive Services at Yale School of Medicine, is seeing patients grow more interested in what’s going into their bodies. “Over the last five years, there does seem to be increased interest in non-hormonal contraception on the part of patients,” she said.
Kikelomo Otuyelu-Garritano, the sole obstetrician and gynecologist at HER Wellness Health Center in Wilton, agrees but says this desire to be proactive doesn’t always translate to being better informed. “They hear about a friend who went on the pill and gained 30 pounds. They don’t necessarily dig any deeper,” she said. “They hear: If you’re going on birth control, you’re going to gain weight.”
New birth control products that capitalize on a trending interest in hormone-free options include FDA-approved Phexxi®. The first non-hormonal prescription contraceptive vaginal gel works as a barrier and alters the pH of the vagina, immobilizing sperm.
Advertisements for Phexxi emphasize that it is hormone-free. The hormone estrogen, found in certain birth control pills, is known to increase the chance of stroke among users with pre-existing risk factors that include elevated blood pressure, previous thrombotic events, smoking, a history of migraines with aura, and advanced age.
Dr. Aileen Gariepy
“I think Phexxi is a game-changer because it works with the vaginal pH, works with sperm, and is non-hormonal,” Gariepy said. But she acknowledges that there are tradeoffs. For example, a multisite study found Phexxi to be 86% effective at preventing pregnancy when used regularly, compared with the pill’s about 93% effectiveness when used correctly. Also, Phexxi doesn’t allow women to be spontaneous, as it must be applied with an applicator up to an hour before intercourse.
Direct-to-consumer advertising of birth control options like Phexxi doesn’t replace accurate and unbiased information from a health care provider.
Risk Factors, Patient Counseling
Mark Alberts, physician-in-chief of the Hartford HealthCare Neuroscience Institute and chief of neurology at Hartford Hospital, sees plenty of stroke patients. And, he says, many patients are surprised to find after suffering a stroke that they were at increased risk. “Oftentimes, the comment is: I had no idea, or nobody told me about risk factors,” Alberts said.
Fortunately, Alberts says, the amount of estrogen used in birth control pills has steadily declined over the years. “As the doses of these compounds have decreased, the risk of stroke has also decreased,” he said. Nevertheless, women whose health behaviors or medical history raise their risk for stroke would be well-advised to avoid estrogen-containing birth control pills.
But research indicates that medical practitioners don’t always offer this advice. In a recent study of oral contraceptive use among women, only 15% of users with one or more stroke risk factors recalled being advised not to start oral contraceptives; 36% recalled a health care provider recommending that they stop.
“It’s our job to make sure that patient counseling is really comprehensive. Historically, we think of birth control as the pill. But that doesn’t mean it’s the best option,” said Amina Carter, a physician assistant and health center manager at Planned Parenthood of Southern New England. “Sometimes, it’s just a matter of education.”
As birth control options become more accessible, thanks largely to the birth control mandate signed into law by President Obama as part of the Affordable Care Act (ACA), patient education becomes increasingly critical. The act allows more women to choose convenience-oriented options like IUDs, a long-acting reversible contraception (LARC) that provides years-long protection with little investment in time, thought or money.
“It’s ‘set it and forget it,’” Carter said. “It doesn’t require any thought after the initial appointment.”
Dr. Kikelomo Otuyelu-Garritano
But becoming fully informed and prepared to decide to use a LARC or another form of birth control does require thought, and it is most helpful when health care practitioners provide guidance. The ACA even included a provision specifically for counseling and services related to birth control. The health care system, however, doesn’t always allow or encourage sufficient time for such guidance.
Otuyelu-Garritano knows this all too well. She quit medicine three times before finally opening her own practice, which allows her the time she feels is necessary to provide her patients with thorough exams and health information. Otuyelu-Garritano says patients are most likely to find the birth control that’s right for them when they have a health care provider willing to consider the options from various perspectives.
“You have to look at things from all angles,” she said. “The only way that’s going to happen is if there’s time [during the medical visit] to talk.”
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“I was pretty heavy into my drug use,” said Amanda, whose last name is being withheld due to patient confidentiality. “I had given up hope and was figuring out a way to use drugs and get away with the consequences. But it doesn’t work like that.”
Now, however, Amanda is feeling “really good.” That’s because she is in a clinical trial for pregnant women run by the Yale School of Medicine, through which she receives medication-assisted treatment (MAT) for her opioid use disorder (OUD). Amanda’s OB-GYN is among a group of physicians at 12 clinics in Connecticut and Massachusetts who are training with Yale to offer OB-GYN care and treatment for substance use disorder under one roof to pregnant patients.
The study comes as the COVID-19 pandemic exacerbates the struggle for women like Amanda, whose disorder began when she first tried heroin at the age of 18. “Pregnant women with a history of substance use disorder have not been able to go to groups and turn to the people they rely on to help them,” said Dr. Ariadna Forray, associate professor of psychiatry at the Yale School of Medicine and director of the Center for Wellbeing of Women and Mothers. “Those connections aren’t there, and so we are seeing an increase in substance use.”
Yale School of Medicine / Anthony DeCarlo.
Dr. Heather Lipkind and Dr. Ariadna Forray discuss the clinical trial.
Forray, who is involved with the study, pointed out that pregnant patients do not get the same access to OUD treatment simply because they’re pregnant. “A lot of providers do not feel comfortable treating pregnant patients, and there’s currently no established model of care for opiate use disorder in prenatal clinics.”
Data from the Centers for Disease Control and Prevention show that the number of women with OUD at labor and delivery more than quadrupled from 1999 to 2014 nationwide. Connecticut data was not included in the report.
In Connecticut, data show that drug overdose deaths overall surged 14.3%, at 1,372 deaths, in 2020, compared with overdose deaths statewide in 2019. The state Department of Public Health—based on data from the Office of the Chief Medical Examiner—reported 250 confirmed overdose deaths as of mid-March 2021, with 255 pending cases. Women made up a quarter of the 6,531 overdose deaths from 2015-2020, state data show.
The American College of Obstetricians and Gynecologists and the American Society of Addiction Medicine both support MAT as the gold standard for opioid use disorder treatment during pregnancy.
In MAT, monitored doses of methadone or buprenorphine are administered to prevent withdrawal symptoms that could devastate the fetus. Yet, pregnant women are hitting a barrier when accessing MAT because of the nuanced care they require. “At least 90 percent of patients with OUD who are interested in receiving buprenorphine for medication-assisted therapy can obtain a prescription if they are not pregnant, compared to less than 75% of pregnant patients,” Forray said.
A nationwide study led by Princeton University researchers, published April 2021 in JAMA, found that the COVID-19 pandemic limited access to buprenorphine, which may have contributed to the increase in opioid overdose deaths.
The Yale study, which is funded by the nonprofit Patient-Centered Outcomes Research Institute, tracks two ways of providing MAT treatment to women before and after the birth of their child. Amanda is in the Collaborative Care (CC) model, where a recovery coach becomes a one-on-one source of support through the pregnancy and three months postpartum. The other program, called Extension for Community Healthcare Outcomes (ECHO), uses video training and mentoring to help clinicians treat pregnant women with OUD. Yale hopes to enroll 480 women—currently, there are 30—half at CC clinics and half at ECHO clinics.
Coastal OB-GYN Photo.
Dr. Amy Snyder
“The medicated assisted treatment takes away the withdrawal and cravings,” Amanda said. “My recovery coach understands me and is real with me. If I ever did have a slip up, it’s something that I wouldn’t have to hide from her or feel ashamed of because she’s constantly letting me know that slipping up is also part of recovery.”
In Connecticut, there is an effort to get people with OUD in MAT programs.
Medicaid / HUSKY Health is actively pursuing the enrollment of MAT providers. Beacon Health Options, Medicaid’s behavioral health administration services contractor, saw a 66% increase in the number of provider locations since 2017. Medicaid data also show that in 2020, 73.8% of 36,007 members received MAT, compared with 68.8% of 37,679 members in 2017.
But during Amanda’s first pregnancy, not only did she not receive MAT at her OB-GYN clinic, she said she felt “super, super ashamed” during visits.
“I was struggling with addiction, and I didn’t know that they were drug-testing me,” Amanda recalled. “I was obviously having dirty urines because I was using, but they never confronted me, like, ‘Hey, we know you’re struggling.’ Once I had the baby, DCF [the Department of Children and Families] was at the hospital, and I was like, oh, wow. They opened an investigation, and I was able to clean it for a little bit.”
This time around, Amanda refers to her pregnancy “as amazing” all because of the Yale study. “They’re getting my doctors more involved, almost like trying to get rid of the stigma around addiction and pregnancy and telling them that it’s OK to talk to me about it.”
OB-GYNs say they require training on best practices in OUD treatment since pregnant women with OUD need nuanced medical care.
Dr. Amy Snyder, an OB-GYN at Coastal OB-GYN & Midwifery in New London, said it is necessary to get more OB-GYNs comfortable with treating pregnant patients with OUD because ultimately, patients and communities are better off. “Studies like this push us in the right direction,” said Snyder, who is a participating physician in the trial.
Amanda just celebrated being “six months clean” and marked the milestone by saving toward buying a house instead of spending “every dollar on drugs.” More important, her 3-year-old son’s “happiness is through the roof. My partner’s happy. This is a redemption pregnancy.”
Without MAT provided by her OB-GYN, combined with the support from her recovery coach, none of this would have been possible, Amanda said. “Addiction doesn’t happen overnight, and neither does recovery,” she pointed out. “Because honestly, I would rather be doing what I’m doing with the help of methadone than to be back on the streets using drugs.”
To find out more about the Project Smart trial, contact Amanda Mele at (609) 618-0523 or amanda.mele@yale.edu
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The Every Voice Coalition in Connecticut, part of a national group of students and advocates, convinced lawmakers to sponsor a bill, An Act Concerning Sexual Misconduct on College Campuses, during this year’s legislative session. The bill, which was aired at a recent public hearing of the Higher Education and Employment Advance Committee, says that:
• Colleges will impose amnesty policies to protect students from being punished for reporting due to alcohol or drug use at the time of the assault; and
• Campus Climate Surveys will be disseminated to collect data on sexual violence and to increase transparency. Advocates and health officials maintain that sexual assaults on college campuses are under-reported.
Zoe Bertone, a student at Connecticut College, is an outreach coordinator for Every Voice Coalition CT.
In 2018, the American Civil Liberties Union of Connecticut reported 436 incidents of sexual assaults and stalking on college campuses, but added that figure represents only a small percentage of all incidents on campuses. A review by the Conn. Health I-Team of sexual violent crimes on 19 college campuses found that there were 235 reported incidents by universities and colleges in Connecticut in 2019. Higher education institutions that participate in federal financial aid programs are required under the Clery Act to disclose crime on or near their college campuses yearly.
“Looking at the data in Connecticut from a couple of years ago, there were 436 reported cases of sexual violence [on college campuses], but we know that that encompasses maybe 10% of what goes on,” said Zoe Bertone, a student at Connecticut College and a student outreach coordinator for Connecticut’s Every Voice Coalition.
Bertone said data reported by colleges is based on official complaints filed. She said that the proposal for Campus Climate Surveys “would be valuable in tracking what students may not be comfortable with reporting.”
Alison Cantor, a Brandeis University student and student outreach coordinator with Connecticut’s Every Voice Coalition, also emphasized the importance of the data that can come from the climate surveys.
“You need to know the data of a problem before you can address it,” Cantor said. “Unfortunately, a lot of people are survivors [of sexual assaults] on college campuses, and no one knows … unless you have a close friend or someone to tell about your experience, they may never share because of shame or blame or fear of guilt and other trauma that goes with that.”
Officials from the University of Connecticut, which reported 19 sexual offenses in 2019, compared to 32 in 2018, spoke in favor of the legislative proposal at the recent public hearing.
“We echo the common goals of creating safe campus communities and removing barriers to reporting,” the testimony submitted reads. “We also recognize the value of obtaining information directly from our students about their experiences with the campus climate and sexual misconduct to inform this work.”
UConn’s testimony said that they believe surveys can be valuable for campuses to assess the climate, and to identify opportunities for prevention and response efforts.
“We would note, however, that in order for campuses to effectively use surveys in this way, colleges and universities should be permitted to administer surveys in the manner best suited for their students and respective campuses and aligned with the work that most institutions already are doing in this area,” UConn’s testimony said.
Stephanie Reitz, UConn’s spokesperson, said UConn provides many ways for students to report sexual violence, including an option to remain anonymous and to decline to participate in an investigation.
“The University offers many resources for survivors of sexual assault, stalking and related interpersonal violence; no one is turned away from support if they decline to participate in an investigation,” Reitz said.
The Campus Climate Survey would have baseline questions for all colleges to use, according to Kaitlyn Drake, a Fairfield University student and member of Connecticut’s Every Voice Coalition steering committee.
“It’s not like campuses can have their own questions on their own volition that relate to their campus, but they’ll have to go through these certain questions,” Drake said. “So, it’s not like they can get around it.”
Alison Hagani, state director of Connecticut’s Every Voice Coalition, said that the bill has the support of about 60 lawmakers, representing both legislative chambers and party affiliations. The measure is before the legislature’s Higher Education and Employment Advance Committee. To become law, the measure must be approved by the committee and the House and Senate and signed by the governor.
“The hearing was everything our coalition hoped it would be,” Hagani, a Brandeis University student from Woodbridge, said. “It represented the wide breadth of support we have for HB 6374 and featured strong student testimony on why the legislation is essential for them.”
Alison Hagani, state director, Connecticut’s Every Voice Coalition.
Testimony in support of the bill included various students, state representatives, college administrators and leaders of groups like the Connecticut ACLU and the Connecticut Alliance to End Sexual Violence.
The Every Voice Coalition was founded in Massachusetts in 2015, with five core values: Free access to medical and legal support services; anti-retaliation protections for survivors; confidential advising for survivors’ rights and options; transparent data on sexual violence; and evidence-based prevention and response training.
The Connecticut branch of the coalition was created in early 2020.
“We also want to amplify voices,” Bertone said. “So, one of the biggest missions is to amplify the voices closest to the pain. We’re survivor-centered, student-written. We are continuing to assess the needs of survivors and how we can best support them with our legislation and beyond.”
Every Voice also works to collaborate with other campus groups, according to Drake, who spoke of her experiences working with her fellow students at Fairfield University, which reported 8 on-campus sexual offenses in 2019 and 8 in 2018.
“Our initiative at Fairfield is to make a safe space where people of all genders, sexualities, all colors can come and express themselves,” Drake said.
Volunteers visit different colleges and host campus conversations to spread the word about what they’re working toward.
“We do presentations over Zoom with our campus leaders and with students on their campuses to talk about what is Every Voice, how did it start, what are our values, what do we do, what is our legislation proposing,” Cantor said. “And then we kind of brainstorm like, what can we do on each campus to spread the word about Every Voice and to mobilize students to advocate for themselves and for policies that will help survivors on their own college campus.”
The volunteers all agreed it’s important to create communities on college campuses that are dedicated and committed to this work.
Ashley Anglisano is a December 2020 graduate of the University of Connecticut, where she studied Journalism and Communication. At UConn, Ashley oversaw the News section of The Daily Campus. She just accepted a communications position with Agero, a driver technology and roadside assistance company, and is relocating to the Greater Boston area.
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