The so-called “April Pool’s Day” — the first day to register for free swimming lessons offered this summer by the city of St. Paul — got off to a frustrating start for many parents, who in some cases found the free slots taken within minutes of the start of online registration on Monday morning.
All slots were filled within two hours, and some almost immediately, according to St. Paul Parks and Recreation. Adding to the confusion, many St. Paul parents received what city officials called a default error message indicating their child was not eligible because they did not live within the city limits, even though they do in fact reside in St. Paul. City officials blamed the city’s new Parks and Rec registration software, which has given them headaches for weeks.
“After looking into the issue, we can confirm that this message was incorrectly displayed as the default for classes that became full and was unrelated to residential status,” said St. Paul Parks and Recreation Director Andy Rodriguez, in a written statement. “We understand the frustration this may have caused and apologize for the confusion as we continue to adjust to our new registration system.”
In the interest of supporting equitable access to water safety, St. Paul Mayor Melvin Carter recently announced that swim classes would be available to city youth this summer, free of charge, with registration beginning at 9 a.m. on Monday. The “April Pool’s Day” registration launch has been promoted on the city’s social media channels and through news media.
Jacquie Mercer, a bartender, said she logged on promptly at 9 a.m., only to be shut out of the registration system. She said her family income is low, despite living in a city neighborhood where median income is high, raising suspicion in her mind that preference was allotted by geographic corner of the city. It would take her two hours of phone calls to get a human being on the line on Monday morning, and when she did, she was told hundreds of spots had been taken “within one minute,” which she considered unlikely.
“The decision to implement a first-come-first-serve registration system for the swimming lessons was a reckless misjudgment,” said Mercer, in a letter Monday to the mayor’s office. “It should have been obvious that such a system would favor those with fast internet connections and ample free time, disadvantaging many residents, including myself and my children, who have been enrolled in this summer program for many years, and have been eagerly awaiting this opportunity for months.”
On social media, another parent wrote on Monday: “I received error messages at 9am that prevented me from checking out dozens of times so now I’m told we were too late, despite being queued in their waiting room at 8:55 (a.m.) This was a preposterous #fail. … They keep telling me different stories on the phone.”
Rodriguez said his department would work through “community partners” to enroll additional participants “who have historically experienced barriers to water safety programs and recreation.” Certain registrations have been set aside for the disabled.
By Carla Vigos, Laguna Woods Globe cooking columnist
My parents were first-generation Italians. Even though they both spoke Italian, regretfully they never taught us the language.
They were proud to be Americans, and instead of going full Italian, we always had the traditional ham with all the trimmings for Easter dinner. The only exception was a homemade Italian bread with dyed hard-boiled eggs shaped into the dough and then baked.
This year Easter is early, and prepping for April showers I wanted to feature a ham and split pea soup, making use of the ham bone and leftover ham. You can substitute a ham hock if you don’t have a ham bone.
This makes enough soup to share or freeze. Any questions or comments, email me at cjvigos@yahoo.com.
Split Pea Soup with Ham
INGREDIENTS
1 pound of split peas soaking in water to clean
1 ham bone or ham hock
3 tablespoons butter
2 cups chopped onions
1 cup chopped celery
1 cup chopped carrots
4 teaspoons minced garlic
1 pound diced ham
1 teaspoon salt
1/2 teaspoon pepper
1/4 teaspoon crushed red pepper
12 cups water
2 bay leaves
1 teaspoon of dried thyme or 2 teaspoons of fresh thyme
DIRECTIONS
In a large pot and on medium high heat, melt the butter. Add the onions and saute for 2 minutes. Add the celery and carrots, stirring for 3 minutes. Add the garlic, stirring for 30 seconds.
Add the ham bone/ham hock and diced ham, stirring until starting to brown. Add drained peas, salt, pepper, crushed red pepper, the 12 cups of water, bay leaves and thyme.
Partially cover the lid and simmer until the split peas are done, about 11/2 to 2 hours. If the soup gets too thick while cooking, add water.
When done, remove the ham bone/ham hock and take off the meat.
If you like a smoother split pea soup, use a blender to get to your desired consistency.
Add the meat back to the soup. Adjust seasonings, top with oyster crackers if desired and serve.
One January morning in 2021, Carol Rosen took a standard treatment for metastatic breast cancer. Three gruesome weeks later, she died in excruciating pain from the very drug meant to prolong her life.
Rosen, a 70-year-old retired schoolteacher, passed her final days in anguish, enduring severe diarrhea and nausea and terrible sores in her mouth that kept her from eating, drinking, and, eventually, speaking. Skin peeled off her body. Her kidneys and liver failed. “Your body burns from the inside out,” said Rosen’s daughter, Lindsay Murray, of Andover, Massachusetts.
Rosen was one of more than 275,000 cancer patients in the United States who are infused each year with fluorouracil, known as 5-FU, or, as in Rosen’s case, take a nearly identical drug in pill form called capecitabine. These common types of chemotherapy are no picnic for anyone, but for patients who are deficient in an enzyme that metabolizes the drugs, they can be torturous or deadly.
Carol Rosen and granddaughters Harleigh Murray (left) and Brooklyn Murray (right) visit the Irish Cottage restaurant in Methuen, Massachusetts. Rosen, a 70-year-old retired school teacher, passed her final days in anguish, after three weeks of chemotherapy with incompatible drugs. (Lindsay Murray/TNS)
Carol Rosen (left) and her daughter, Lindsay Murray, celebrate Thanksgiving in 2020. Rosen, a 70-year-old retired school teacher, passed her final days in anguish, after three weeks of chemotherapy with incompatible drugs. (Justin Murray/TNS)
Carol Rosen (left) and her daughter, Lindsay Murray, visit Boston’s Fenway Park in 2020. Rosen, a 70-year-old retired school teacher, passed her final days in anguish, after three weeks of chemotherapy with incompatible drugs. (Lindsay Murray/TNS)
Those patients essentially overdose because the drugs stay in the body for hours rather than being quickly metabolized and excreted. The drugs kill an estimated 1 in 1,000 patients who take them — hundreds each year — and severely sicken or hospitalize 1 in 50. Doctors can test for the deficiency and get results within a week — and then either switch drugs or lower the dosage if patients have a genetic variant that carries risk.
Yet a recent survey found that only 3% of U.S. oncologists routinely order the tests before dosing patients with 5-FU or capecitabine. That’s because the most widely followed U.S. cancer treatment guidelines — issued by the National Comprehensive Cancer Network — don’t recommend preemptive testing.
The FDA added new warnings about the lethal risks of 5-FU to the drug’s label on March 21 following queries from KFF Health News about its policy. However, it did not require doctors to administer the test before prescribing the chemotherapy.
The agency, whose plan to expand its oversight of laboratory testing was the subject of a House hearing, also March 21, has said it could not endorse the 5-FU toxicity tests because it’s never reviewed them.
But the FDA at present does not review most diagnostic tests, said Daniel Hertz, an associate professor at the University of Michigan College of Pharmacy. For years, with other doctors and pharmacists, he has petitioned the FDA to put a black box warning on the drug’s label urging prescribers to test for the deficiency.
“FDA has responsibility to assure that drugs are used safely and effectively,” he said. The failure to warn, he said, “is an abdication of their responsibility.”
The update is “a small step in the right direction, but not the sea change we need,” he said.
Europe Ahead on Safety
British and European Union drug authorities have recommended the testing since 2020. A small but growing number of U.S. hospital systems, professional groups, and health advocates, including the American Cancer Society, also endorse routine testing. Most U.S. insurers, private and public, will cover the tests, which Medicare reimburses for $175, although tests may cost more depending on how many variants they screen for.
In its latest guidelines on colon cancer, the Cancer Network panel noted that not everyone with a risky gene variant gets sick from the drug, and that lower dosing for patients carrying such a variant could rob them of a cure or remission. Many doctors on the panel, including the University of Colorado oncologist Wells Messersmith, have said they have never witnessed a 5-FU death.
In European hospitals, the practice is to start patients with a half- or quarter-dose of 5-FU if tests show a patient is a poor metabolizer, then raise the dose if the patient responds well to the drug. Advocates for the approach say American oncology leaders are dragging their feet unnecessarily, and harming people in the process.
“I think it’s the intransigence of people sitting on these panels, the mindset of ‘We are oncologists, drugs are our tools, we don’t want to go looking for reasons not to use our tools,’” said Gabriel Brooks, an oncologist and researcher at the Dartmouth Cancer Center.
Oncologists are accustomed to chemotherapy’s toxicity and tend to have a “no pain, no gain” attitude, he said. 5-FU has been in use since the 1950s.
Yet “anybody who’s had a patient die like this will want to test everyone,” said Robert Diasio of the Mayo Clinic, who helped carry out major studies of the genetic deficiency in 1988.
Oncologists often deploy genetic tests to match tumors in cancer patients with the expensive drugs used to shrink them. But the same can’t always be said for gene tests aimed at improving safety, said Mark Fleury, policy director at the American Cancer Society’s Cancer Action Network.
When a test can show whether a new drug is appropriate, “there are a lot more forces aligned to ensure that testing is done,” he said. “The same stakeholders and forces are not involved” with a generic like 5-FU, first approved in 1962, and costing roughly $17 for a month’s treatment.
Oncology is not the only area in medicine in which scientific advances, many of them taxpayer-funded, lag in implementation. For instance, few cardiologists test patients before they go on Plavix, a brand name for the anti-blood-clotting agent clopidogrel, although it doesn’t prevent blood clots as it’s supposed to in a quarter of the 4 million Americans prescribed it each year. In 2021, the state of Hawaii won an $834 million judgment from drugmakers it accused of falsely advertising the drug as safe and effective for Native Hawaiians, more than half of whom lack the main enzyme to process clopidogrel.
The fluoropyrimidine enzyme deficiency numbers are smaller — and people with the deficiency aren’t at severe risk if they use topical cream forms of the drug for skin cancers. Yet even a single miserable, medically caused death was meaningful to the Dana-Farber Cancer Institute, where Carol Rosen was among more than 1,000 patients treated with fluoropyrimidine in 2021.
Her daughter was grief-stricken and furious after Rosen’s death. “I wanted to sue the hospital. I wanted to sue the oncologist,” Murray said. “But I realized that wasn’t what my mom would want.”
Instead, she wrote Dana-Farber’s chief quality officer, Joe Jacobson, urging routine testing. He responded the same day, and the hospital quickly adopted a testing system that now covers more than 90% of prospective fluoropyrimidine patients. About 50 patients with risky variants were detected in the first 10 months, Jacobson said.
Dana-Farber uses a Mayo Clinic test that searches for eight potentially dangerous variants of the relevant gene. Veterans Affairs hospitals use a 11-variant test, while most others check for only four variants.
Different Tests May Be Needed for Different Ancestries
The more variants a test screens for, the better the chance of finding rarer gene forms in ethnically diverse populations. For example, different variants are responsible for the worst deficiencies in people of African and European ancestry, respectively. There are tests that scan for hundreds of variants that might slow metabolism of the drug, but they take longer and cost more.
These are bitter facts for Scott Kapoor, a Toronto-area emergency room physician whose brother, Anil Kapoor, died in February 2023 of 5-FU poisoning.
Anil Kapoor was a well-known urologist and surgeon, an outgoing speaker, researcher, clinician, and irreverent friend whose funeral drew hundreds. His death at age 58, only weeks after he was diagnosed with stage 4 colon cancer, stunned and infuriated his family.
In Ontario, where Kapoor was treated, the health system had just begun testing for four gene variants discovered in studies of mostly European populations. Anil Kapoor and his siblings, the Canadian-born children of Indian immigrants, carry a gene form that’s apparently associated with South Asian ancestry.
Scott Kapoor supports broader testing for the defect — only about half of Toronto’s inhabitants are of European descent — and argues that an antidote to fluoropyrimidine poisoning, approved by the FDA in 2015, should be on hand. However, it works only for a few days after ingestion of the drug and definitive symptoms often take longer to emerge.
Most importantly, he said, patients must be aware of the risk. “You tell them, ‘I am going to give you a drug with a 1 in 1,000 chance of killing you. You can take this test. Most patients would be, ‘I want to get that test and I’ll pay for it,’ or they’d just say, ‘Cut the dose in half.’”
Alan Venook, the University of California-San Francisco oncologist who co-chairs the National Comprehensive Cancer Network, has led resistance to mandatory testing because the answers provided by the test, in his view, are often murky and could lead to undertreatment.
“If one patient is not cured, then you giveth and you taketh away,” he said. “Maybe you took it away by not giving adequate treatment.”
Instead of testing and potentially cutting a first dose of curative therapy, “I err on the latter, acknowledging they will get sick,” he said. About 25 years ago, one of his patients died of 5-FU toxicity and “I regret that dearly,” he said. “But unhelpful information may lead us in the wrong direction.”
In September, seven months after his brother’s death, Kapoor was boarding a cruise ship on the Tyrrhenian Sea near Rome when he happened to meet a woman whose husband, Atlanta municipal judge Gary Markwell, had died the year before after taking a single 5-FU dose at age 77.
“I was like … that’s exactly what happened to my brother.”
Murray senses momentum toward mandatory testing. In 2022, the Oregon Health & Science University paid $1 million to settle a suit after an overdose death.
“What’s going to break that barrier is the lawsuits, and the big institutions like Dana-Farber who are implementing programs and seeing them succeed,” she said. “I think providers are going to feel kind of bullied into a corner. They’re going to continue to hear from families and they are going to have to do something about it.”
(KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs of KFF — the independent source for health policy research, polling and journalism.)
Elizabeth Bauer was working out at the gym one morning last August when she got a phone call from her fertility nurse. It was a call that Bauer and her wife, Rebecca, had long been waiting for.
Elizabeth dialed in Rebecca so they could listen together: They were pregnant.
The Washington, D.C., couple decided before they got married three years ago that they wanted to have a child. Both wanted to play a biological part in the pregnancy. So, they used a process called reciprocal in vitro fertilization, through which eggs were retrieved from Rebecca and fertilized with donor sperm to create embryos. Then one of the embryos was implanted in Elizabeth’s uterus.
Elizabeth, a 35-year-old elementary school teacher, and Rebecca, a 31-year-old nonprofit consultant, had health insurance, but it wouldn’t cover the roughly $20,000 procedure, so they had to pay out of pocket.
But beginning next year, insurers providing coverage in D.C. will have to pay for IVF for beneficiaries, including same-sex couples, who can’t conceive on their own. Only seven states (Colorado, Delaware, Illinois, Maine, Maryland, New Jersey and New York) have similar mandates. However, a new definition of “infertility” could prompt other states to follow suit.
The American Society for Reproductive Medicine in October expanded the definition of infertility to include all patients who require medical intervention, such as use of donor gametes or embryos, to conceive as a single parent or with a partner. Previously, the organization defined infertility as a condition in which heterosexual couples couldn’t conceive after a year of unprotected intercourse.
The group emphasized the new definition should not “be used to deny or delay treatment to any individual, regardless of relationship status or sexual orientation.”
Dr. Mark Leondires, a reproductive endocrinologist and founder and medical director at Illume Fertility and Gay Parents To Be, said the new definition could make a huge difference.
“It gives us extra ammunition to say, ‘Listen, everybody who meets the definition of infertility, whether it’s an opposite-sex couple or same-sex couple or single person, who wants to have a child should have access to fertility services,’” he said.
At least four states (California, Connecticut, Massachusetts and Rhode Island) are currently weighing broader IVF coverage mandates that would explicitly include same-sex couples, according to RESOLVE: The National Infertility Association. Bills were introduced but failed to advance in Oregon, Washington and Wisconsin.
A recent policy shift at the federal level also might add to the momentum. Earlier this month, the departments of Defense and Veterans Affairs announced expanded IVF service benefits to patients regardless of marital status, sexual orientation or whether they are using donor eggs or sperm. The new policy follows a lawsuit filed in federal court last year.
“The federal government is the largest employer in the country, so if they’re providing these type of benefits, it definitely adds pressure on other employers and states to do the same,” said Betsy Campbell, RESOLVE’s chief engagement officer.
A total of 21 states have laws mandating that private insurers cover fertility treatments, but only 15 include at least one cycle of IVF in that mandate. Only New York and Illinois provide some fertility coverage for people who are insured through Medicaid, the state-federal program for people with low incomes and disabilities. Neither state covers IVF for Medicaid recipients.
100,000 babies
IVF involves collecting mature eggs from ovaries, using donated sperm to fertilize them in a lab, and then placing one or more of the fertilized eggs, or embryos, in a uterus. One full cycle of IVF can take up to six weeks and can cost between $20,000 and $30,000. Many patients need multiple cycles before getting pregnant.
Nearly 100,000 babies in the U.S. were born in 2021 through IVF and other forms of assisted reproductive technology, such as intrauterine insemination, according to federal data.
IVF continues to garner nationwide attention in the wake of the Alabama Supreme Court’s ruling last month that under state law, frozen IVF embryos are children, meaning patients or IVF facilities can be criminally charged for destroying them. The decision caused an uproar, and three weeks later Alabama Republican Gov. Kay Ivey signed a bill into law that provides criminal and civil immunity for IVF clinicians and patients.
Polly Crozier, director of family advocacy at GLBTQ Legal Advocates & Defenders, or GLAD, described the Alabama decision as “a shock to the system.” But Crozier said the reaction to it sparked a “bipartisan realization that family-building health care is important to so many people.”
Crozier praised the insurance mandates in Colorado, Illinois, Maine and Washington, D.C., for more explicitly including LGBTQ+ people. Maine’s law, for example, states that a fertility patient includes an “individual unable to conceive as an individual or with a partner because the individual or couple does not have the necessary gametes for conception,” and says that health insurers can’t “impose any limitations on coverage for any fertility services based on an enrollee’s use of donor gametes, donor embryos or surrogacy.”
Christine Guarda, financial services representative at the Center for Advanced Reproductive Services at the University of Connecticut School of Medicine, said more same-sex couples are seeking help starting families. One reason, she said, is that more large employers that provide insurance directly to their employees, such as Amazon, are including broad IVF coverage.
‘Elective procedure’?
But some lawmakers are skeptical of expanding the definition of infertility to include same-sex couples. That was evident at a hearing on the Connecticut bill earlier this month, where Republican state Rep. Cara Pavalock-D’Amato noted that “infertility isn’t necessarily elective, but having a baby is.”
“Now, we are changing definitions to cover elective procedures,” Pavalock-D’Amato said. “If we’re changing the definition for this elective procedure, then why not others as well?”
She added: “Infertility, whether you are straight or gay, up to this point has been a requirement. Now, is it through this bill that we are no longer requiring people to be sick? They no longer have to be infertile?”
But proponents of the change argue that extending IVF mandates to cover same-sex couples is a question of fairness.
“I don’t think anybody in the LGBTQ community is asking for more. They’re just asking for the same benefit, and it is discriminatory to say, ‘You don’t get the same benefit as your colleague simply because you have a same-sex partner,’” Leondires said in an interview.
“If you’re paying to the same health care system as the person sitting next to you, then you should have the same benefit,” he said.
Elizabeth and Rebecca Bauer, who are busy decorating a nursery and buying baby clothes, recognize that they were fortunate to have the money to pursue IVF even without insurance coverage, and that “there are plenty of people who don’t have the time or the ability.”
“There are so many ways that people who want to build a family might struggle,” Elizabeth said, adding that the previous infertility definition felt like a “pretty impossible barrier” for non-straight couples. “Insurance should make building a family possible for any person or persons who want to.”
Stateline is part of States Newsroom, a national nonprofit news organization focused on state policy.
