dear mother,

how many people in our family have an autoimmne disease?

have you ever read faustmanlab.org, pubmed.org faustman dl, uspto.gov inventor search faustman, ?

was lee iacocca'swife just another dumb broad? hint google faustman + iacoccoa + forbes

who is this italian guy g rstori? hint pubmed.org ristori + bcg

am i your gary gilmore making utah great?

out of the mouths of the you g sometimes come wuestions that will choke their parents into considering what the world might have to offer them?

Utah Family Sues After Son With Diabetes Is Kept From School while parents contemplate treatment developed in boston where suffolk racetrack died

A child pricking his finger with a glucometer before a morning snack. An estimated 167,000 Americans under 20 have Type 1 diabetes.CreditAlexandra Daley-Clark for The New York Times

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CreditCreditAlexandra Daley-Clark for The New York Times

By Christine Hauser

June 29, 2019

The 8-year-old son of Caly and Wade Watkins is an active and happy Utah boy, they say. He fishes in a pond, sometimes landing a catfish, which he throws back. He rides his dirt bike for miles. He pores over his
schoolwork, which in second grade included mastering multiplication tables.

But at least four times a day, the Watkinses’s son, who has Type 1 diabetes, needs to test his blood sugar and take injections of insulin, including while in school. Last year, a disagreement over how his medical plan should be administered led the Jordan School District to bar the boy from attending classes, according to a lawsuit filed this month in Federal District Court.

So during the 2018-19 school year, the boy did his class work on the dining room table at the family home instead of attending Butterfield Canyon Elementary School with his friends in Herriman, a city of about 26,000 people in southwestern Salt Lake County. But Ms. Watkins said he kept his school bag and medical kit ready, just in case.

“He would cry and get angry,” she said. “He loves school. He is very good at math; he is working on reading; he loves his friends.”

In the lawsuit, filed on June 13, Ms. Watkins alleges that the school district’s decision violates the boy’s rights under state and federal laws that require public schools to accommodate the medical needs of students, and that prohibit discrimination based on a disability.

The district has allegedly denied him “his right to attend school with his non-diabetic peers for an entire school year,” it says.

The boy, referred to as K.W. in the lawsuit, is one of about 167,000 Americans under 20 who have Type 1 diabetes, according to 2009 data from the Centers for Disease Control and Prevention.

At least 34 states and the District of Columbia have trained teachers, administrators and coaches in schools who are permitted to give routine insulin and emergency glucagon, according to the American Diabetes Association. School employees also follow individual plans written for a diabetic student by a doctor or a nurse.

But the Watkins family’s struggles with school officials in managing K.W.’s diabetes are not unusual. The Department of Education’s Office for Civil Rights received 38 complaints regarding how school districts handled diabetes-related cases in the United States in the 2019 fiscal year, an agency spokesman said. There were 55 the year before.

Some students have encountered difficulties receiving care at schools, such as insulin shots or blood sugar monitoring. Children have been barred from attending their zoned schools or have been transferred after diagnosis to schools with nurses, previous reporting by The Times has found.

Others are not allowed to participate in sports or extracurricular activities.

“He’s a normal boy who needs to stop and test his blood sugar and inject insulin so he can continue to do what he loves!” Ms. Watkins said.

The Salt Lake Tribune wrote about the family in an article on Wednesday.

Under Utah law, a public school is required to allow a student to self-administer diabetes medication with permission from the child’s parents and doctors. Nurses or trained school staff members can administer the medication if they follow the child’s preauthorized health plan.

It also allows students to carry the medicine and to administer it to themselves.

But Jordan School District policy allows medication delivered by syringe only if it has been prefilled by the drug manufacturer or by a registered pharmacist. This was a factor in the disagreement between the district and the Watkins family, who wanted to be responsible for filling the syringes themselves.

Here's How Lee Iacocca Wants To Cure Diabetes

Arlene Weintraub Contributor

Pharma & Healthcare

I cover the science and business behind drug development and health

In the late 1990s, former Chrysler CEO Lee Iacocca handed more than $10 million to Massachusetts General Hospital (MGH) scientist Denise Faustman and instructed her to transform an ancient tuberculosis vaccine into a cure for type 1 diabetes. Today Faustman announced the latest milestone in that project—FDA clearance to launch a large trial in people based on what her lab learned from that early research. And the 90-year-old auto magnate continues to fund her studies through the Iacocca Family Foundation, which he founded in 1984 in memory of his late wife, Mary, who died of complications from diabetes.

The trial, announced at the American Diabetes Association conference in Boston, will investigate whether treating patients with the vaccine, bacillus Calmette-Guérin (BCG), will improve natural insulin production in adult patients whose pancreases still produce small but detectable levels of the hormone. If it works, BCG might one day be used to essentially reverse the disease in some patients—even adults who have suffered from diabetes from childhood—says Faustman, director of MGH’s immunobiology laboratory and the study’s principal investigator. And it wouldn’t cost much, either, since BCG has been around for nearly a century and is available in generic form.

“We’re not only going for something cheap and safe, but also trying to figure out a good treatment that might reverse the most severe form of the disease in people who are 15 or 20 years out,” Faustman says.

Here’s how BCG works: The vaccine prompts the immune system to make tumor necrosis factor (TNF), a protein that destroys the abnormal T-cells that interfere with the pancreas’s ability to make insulin. That elevation of TNF has already been well-proven to be quite therapeutic in some settings—BCG, in fact, is approved by the FDA not only to prevent tuberculosis but also to treat bladder cancer.

Faustman’s lab spent years doing basic science experiments to show TNF can temporarily eliminate the abnormal T-cells that cause type 1 diabetes. Iacocca’s foundation, which had been supporting some of that work since coming across the lab’s earliest studies, invited Faustman to present the results of her research at a board meeting in 1999, she recalls.

Iacocca asked Faustman why she wasn’t using BCG to cure diabetes in mouse models of the disease. “I said, 'It’s too early. We need to do more basic science,'” Faustman recalls. “He looked at me and said, 'You know, it’s my money.' We made a deal that if I would aggressively go forward in the mouse he would support me. He gets the credit for supporting the basic science that led to the discovery that TNF is needed in type 1 diabetes.”

The school district and Joan M. Andrews, a lawyer for the district, referred questions about the case to the Utah attorney general’s office, which declined to comment on Friday. An email that Ms. Andrews wrote in December to the Watkinses’ lawyer, attached to the lawsuit as evidence, showed that the district had made attempts to resolve the issue.

The complications arose after the 2016-17 school year, when the boy was in kindergarten and his 10-year-old sister would check on him in class to make sure his insulin pump was working properly, Ms. Watkins said.

The next school year, when he was in first grade, school nurses injected him with medicine they had drawn out of a vial.

But K.W. uses one type of insulin that is diluted, depending on his needs, and another type that is available without a prescription for his lunch dose, the lawsuit said. Ms. Watkins asked to verify every dose, so the staff agreed to text her photographs so she could confirm them.

Sometimes those images were blurry or were not sent at all, the lawsuit said. Once, in January 2018, a nurse sent her a message showing a syringe containing 10 units of the insulin solution, rather than the proper dose of one unit, it said. Ms. Watkins called the nurse, and “a possibly fatal medical emergency was averted,” the suit alleged.

Ms. Watkins, 36, who also has Type 1 diabetes, then asked that K.W. be allowed to use syringes prefilled by his parents at home or to allow his parents to go to the school to give him the medication. The requests were denied.

“They would not permit the home dilution of the insulin, which the parents have done for years,” Nate Crippes, a lawyer with the Disability Law Center who is representing the Watkins family, said. “It’s a simple process.”

Just before the 2018-19 school year, when K.W. was to start second grade, there was no agreement on a health plan and the boy was placed on “home and hospital status,” meaning he was deemed too ill to attend school.

In December, the district said it would consider allowing the boy to come to school if the prefilled syringes were labeled by a pharmacy, Ms. Andrews, the district lawyer, said in the email included as evidence with the lawsuit.

But Ms. Watkins alleged in the lawsuit that the method of prefilling by a pharmacist was impractical, unaffordable and not covered by insurance, the lawsuit said. It is seeking an end to the school exclusion and damages.

K.W. was provided with a home schooling curriculum and the school offered to send a teacher to the house a few hours a week, Ms. Watkins said.

The boy said that he felt “mad” to be kept from school, and that he missed his friends, lunch, recess and playing basketball.

A version of this article appears in print on June 30, 2019, on Page A4 of the New York edition with the headline: Utah School Bars Boy With Diabetes, Prompting a Suit. Order Reprints | Today’s Paper | Subscribe