Tag Archives: Children

HIV Children and Orphans are Defacto Test Subjects

Posted on by
Reply

Children with HIV are increasingly finding that their status is that of involuntary research subjects, not victims. In December 2004, for example, the journal Nature Medicine reported that since the early 1990s, HIV-positive orphans have been the subjects of “dozens of national clinical trials run by researchers at Columbia University Medical Center and other [New York City] area hospitals.” Mammoth pharmaceutical corporations such as GlaxoSmithKline, the manufacturer of zidovudine, have sponsored the testing of antiretroviral and other pharmaceuticals on scores of HIV-infected orphans housed in New York City’s Incarnation Children’s Center (ICC). This institution for the HIV-infected is run by Catholic Charities in Washington Heights…

Some of the candidate AIDS medications are being tested to determine their toxicity. Children as young as four were given cocktails of up to seven potent medications, although physicians are normally reluctant to give young children even approved powerful medications. Little if any benefit accrued to the infants from these risky exposures, because although some were HIV-positive, they were too young to have developed AIDS. One study is of “Stavudine…Alone or in Combination with Didanosine,” a combination that has killed adult women. An experimental vaccine administered to children as young as twelve months utilizes “live chicken pox virus,” even though it can trigger the disease itself. A study titled “HIV Levels in Cerebrospinal Fluid” required that infants undergo a spinal tap, a risky, invasive, and painful procedure. There was even a study on HIV-negative children that used an experimental HIV vaccine. By law, such a nontherapeutic study on healthy children can convey only minimal risk, but the vaccine’s risks are unknown.

Also, some of the experiments did not involve HIV therapeutics: One drug trial tested a herpes medication “for tolerance, safety and pharmacokinetic” information; another investigated reactions to a doubled dose of measles vaccine—in six-month-old infants.

For its part, Columbia University released a statement denying that the drugs’ side effects were serious enough to warrant discontinuing treatment. However, this should have been the parents’ call, not the university’s or the ICC’s. But guardians and parents who adopted HIV-infected children have found the ICC, ACS, and researchers arrayed against them when they have tried to take children off medications they found to be harmful.

In explaining her take on this struggle, Dr. Painter has said, “We’re having an increase in referrals over the last years to deal with medication adherence. There are a fair number of children whose HIV illness may be well controlled but whose families are experiencing difficulty complying with the child’s medication regimen.” By “referrals,” Painter means children who are torn from parents and returned to the various agencies when these parents and guardians balk at dispensing the investigational drugs.

–Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present by Harriet A. Washington

Children as Test Subjects

Posted on by
Reply

The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research concluded in 1977 that children were an especially vulnerable population because they could not offer consent. Yet, children today are more likely to become research subjects now that federal policies begun in the mid-1990s have changed the face of the “typical research subject.” The National Institutes of Health (NIH) Research Revitalization Act mandated the inclusion of women and minorities in all research in 1994 and added children in 1998. So far, the new FDA and NIH policies have placed stress not on protecting children but on ensuring children’s access to research—unfortunately, this too often means researchers’ access to children. This is an ominous paradigm shift for black children, who already are overrepresented in nontherapeutic and stigmatizing medical research.

–Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present by Harriet A. Washington

Radioactive Experiments on Orphans

Posted on by
Reply

Vanderbilt University physicians administered radioactive cocktails to pregnant women in Nashville. The University of Chicago fed the radioactive elements strontium and cesium to 102 unwitting patients at state schools. One Dickensian institution, the Fernald School in Waltham, Massachusetts, added radioactive oatmeal to the menus of thirty orphans in a program sponsored by the AEC with the support of the Quaker Oats Company. Old videotapes reveal that some of these Fernald boys were African American, but no records with racial identifiers were ever released. When victims died, government scientists obtained their bodies and autopsied them carefully, measuring the levels of radioactivity and biological damage. To enable large numbers of these grim assessments, at least fifteen thousand bodies were exposed and collected for one project alone: Operation Sunshine. Until the mid-1980s and without the knowledge of patients or their next of kin, this program shipped the bodies and body parts of radiation experiment victims to be dissected at headquarters in Los Alamos, New Mexico.

–Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present by Harriet A. Washington

Pediatrician Pedophile

Posted on by
Reply

This biography is well written but the story is difficult to read. It’s the true story of a young girl who was sexually abused by her pediatrician. It provides excellent illustration of a predator’s selection and grooming techniques. The doctor put both mother and daughter through a series of tests while acting as the girl’s doctor, just to see how far he could go – right in front of the mother. Being a trusting woman who harbored the commonly-held belief that medical professionals are implicitly trustworthy, the mother did not see any problems until it was too late.

This is the kind of thing people need to know how to spot and deal with. These are the activities that children need to be taught to recognize and directly, openly and verbally address, instead of being placed in a state of fear:

The whole time during which he had been touching me, I had felt powerless to say anything. I had been intimidated by him, and worried about what Mum might say, because she clearly trusted him. I was afraid, I was only small, and he was so big. Mum couldn’t have picked up on any of his strange behaviour, or else she would have questioned it.

–Doctor’s Orders by Hannah Wingfield

Automating the Forced Removal of Children in Poverty

Posted on by
Reply

Quote 1

Where the line is drawn between the routine conditions of poverty and child neglect is particularly vexing. Many struggles common among poor families are officially defined as child maltreatment, including not having enough food, having inadequate or unsafe housing, lacking medical care, or leaving a child alone while you work. Unhoused families face particularly difficult challenges holding on to their children, as the very condition of being homeless is judged neglectful.

Quote 2:

The AFST sees the use of public services as a risk to children. A quarter of the predictive variables in the AFST are direct measures of poverty: they track use of means-tested programs such as TANF, Supplemental Security Income, SNAP, and county medical assistance. Another quarter measure interaction with juvenile probation and CYF itself, systems that are disproportionately focused on poor and working-class communities, especially communities of color. The juvenile justice system struggles with many of the same racial and class inequities as the adult criminal justice system. A family’s interaction with CYF is highly dependent on social class: professional middle-class families have more privacy, interact with fewer mandated reporters, and enjoy more cultural approval of their parenting than poor or working-class families.

Quote 3:

We might call this poverty profiling. Like racial profiling, poverty profiling targets individuals for extra scrutiny based not on their behavior but rather on a personal characteristic: living in poverty. Because the model confuses parenting while poor with poor parenting, the AFST views parents who reach out to public programs as risks to their children.

–Automating Inequality: How High-Tech Tools Profile, Police, and Punish the Poor by Virginia Eubanks

A Father’s Tattoos are Love Letters to his Children

Quote

Posted on by
Reply

Amazon.com

Daddy hums to Marvin, but he couldn’t carry a tune if it came in a box. He’s wearing a Lakers jersey and no shirt underneath, revealing tattoos all over his arms. One of my baby photos smiles back at me, permanently etched on his arm with Something to live for, something to die for written beneath it. Seven and Sekani are on his other arm with the same words beneath them. Love letters in the simplest form.

–The Hate U Give by Angie Thomas

Happy Father’s Day!

Mom Only Sees Her Little Princess

Quote

Posted on by
Reply

Amazon.com

But when Ma looks at me she doesn’t see a human whippet—five-three me with scruffy dark hair and a chest as big as a keg, with a wasp waist and the legs like an Olympic sprinter. And the fangs, don’t forget the fangs. Mongoose fangs, which was what got me my nickname—Rikki. My real name is Miranda. Nobody calls me that except the teachers at school. Rikki or Miranda, Ma just sees me as her little princess, her miracle joker baby.

–The Thing about Growing Up in Jokertown (A Tor.com Original) by Carrie Vaughn

Book Review: Letters from Santa and the Ice Bear

Posted on by
Reply

JRR Tolkien took Christmas pretty seriously. He took the time to write complete letters to his children in the name of Santa. He even created a strange, spindly and unfamiliar (to his family) form of handwriting, so the children wouldn’t know they came from dad.

There’s also a collection of fun personalities that live with Santa, including the Polar Bear, who is both hapless and mischievous:

“Still [Polar Bear] is all right now—I know because he has been at his tricks again: quarreling with the Snowman (my gardener) and pushing him through the roof of his snow house; and packing lumps of ice instead of presents in naughty children’s parcels. That might be a good idea, only he never told me and some of them (with ice) were put in warm storerooms and melted all over good children’s presents!”

And very pleasant neighbors:

“The Man in the Moon paid me a visit the other day—a fortnight ago exactly—he often does about this time, as he gets lonely in the Moon, and we make him a nice little Plum Pudding (he is so fond of things with plums in!).”

In several others, the North Pole is attacked by goblins who actually wage war on the Christmas castle, but find all of Santa’s helpers are far better versed in combat than one might assume – particularly the bear. The goblin wars are exciting, but they are an unusual (and vaguely violent) perspective on Father Christmas, which made them feel a bit odd at points. If you’ve read the Hobbit and the Lord of the Rings trilogy, than these stories will sound very familiar.

“I had to blow my golden trumpet (which I have not done for many years) to summon all my friends. There were several battles—every night they used to attack and set fire in the stores—before we got the upper hand, and I am afraid quite a lot of my dear elves got hurt…They have rescued all my reindeer. We are quite happy and settled again now, and feel much safer. It really will be centuries before we get another goblin-trouble. Thanks to Polar Bear and the gnomes, there can’t be very many left at all”

The dates on the letters range from 1920 to 1943, so Santa’s struggles with WWII are detailed in several.

“I am so glad you did not forget to write to me again this year. The number of children who keep up with me seems to be getting smaller: I expect it is because of this horrible war, and that when it is over things will improve again, and I shall be as busy as ever. But at present so terribly many people have lost their homes: or have left them; half the world seems in the wrong place.”

From both a historical and biographical perspective, this portion of the letters are fascinating – to an adult. I attempted to explain the historic significance of those dates to the children in my life and they just stared at me with blank confusion.

Amazon.com

My only complaint about the hardcover version  centers on the illustrations. Tolkien included several pictures, illustrating the North Pole and the antics of the Ice Bear. The hard cover edition provides glossy, full-color reproductions of the handwritten letters and all illustrations, but the size of the book is slightly large than a pocket novel (about the size of an 8.5 x 11 piece of paper folded in half), so these reproductions are hard to see.

What I wish they had done was a large format, full color, 3-D version similar to the Ologies books, such as Dragonology: The Complete Book of Dragons (Ologies) by Dr. Ernest Drake (Author), Dugald A. Steer (Editor).

This super-fancy format would provide ample room for showing off the letters and illustrations, including little envelopes with copies of the letters included. The Dragonalogy book’s secret pockets with letters in both English and in runes are fascinating to children and just-plain-fun for us stodgy-old-adults.

There are many more quotes from this book already posted to this blog, including those mentioned above.

Book reviewed: Letters From Father Christmas by J.R.R. Tolkien

Seattle is Lumping All its Homeless Children Into One School

Quote

Posted on by
Reply

Just plain wrong on so many levels.

For all of the homeless shelters in metropolitan Seattle, the assigned elementary school is Lowell Elementary, up on Capitol Hill….Absolutely no one likes it there, it seems. Students report violence, bullying, and apathetic staff. And the staff claims they aren’t adequately supported to take care of students with special needs….With more training and a dedicated mental health staff, perhaps this school could be a light for students. But as it is, funneling the city’s growing population of homeless youth into one inadequate school is simply harmful.

Seattle is Lumping All its Homeless Children Into One School, LET’s Blog! ON LITERACY, EDUCATION, AND TECHNOLOGY by Mandy