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California Fails to Adequately Help Blind and Deaf Prisoners, US Judge Rules

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Don Thompson
Fri, 12 Apr 2024 09:00:00 +0000

SACRAMENTO, Calif. — Thirty years after prisoners with disabilities sued the of California and 25 years after a federal court first ordered accommodations, a judge found that state prison and parole still are not doing enough to deaf and blind prisoners — in part because they are not using readily available technology such as recordings and laptop computers.

U.S. District Judge Claudia Wilken's rulings on March 20 centered on the prison system's need to help deaf, blind, and low-vision prisoners better prepare for parole hearings, though the decisions are also likely to improve accommodations for hundreds of other prisoners with those disabilities.

“I believe I should have the same opportunity as hearing individuals,” a prisoner, deaf since birth, said in court documents.

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The is one of several class-action proceedings that have led the courts to assume oversight of the prison system's treatment of those who are sick or suffer from mental illnesses.

“It is difficult not to despair,” a blind prisoner said in written testimony. “I am desperate for some kind of assistance that will let me prepare adequately for my parole hearing.”

The parole can begin more than a year before an person's hearing and last long afterward. And the consequences of rejection are great: People denied parole typically must wait three to 15 years before they can try again.

Prisoners are expected to review their prison and a psychologist's assessment of whether they are at risk for future violence, write a release plan housing and work plans, write letters of remorse, and prepare a statement to parole officials on why they should be released.

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“It is a very time-consuming and important process,” said Gay Grunfeld, one of the attorneys representing about 10,000 prisoners with many different disabilities in the federal class-action lawsuit. “All of these tasks are harder if you are blind, low-vision, or deaf.”

The California Department of Corrections and Rehabilitation and its Board of Parole Hearings “remain committed to conducting fair hearings and ensuring access to the hearings for all participants. We are assessing the potential impact of the order and exploring available legal options,” said spokesperson Albert Lundeen.

The department counts more than 500 prisoners with serious vision problems and about 80 with severe hearing problems, though Grunfeld thinks both are undercounts.

California's prison system has lagged in adopting technological accommodations that are commonly used in the outside world, Wilken found in her ruling.

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For instance, California gives prisoners digital tablets that can be used for communications and entertainment, and since late 2021 has gradually been providing secure laptops to prisoners who are enrolled in college, GED, and high school diploma programs.

But officials balked at providing computers that Wilken decided are needed by some prisoners with disabilities. She required the department to develop a plan within 60 days of her order to, among many things, provide those individuals with laptops equipped with accommodations like screen magnification and software that can translate text to speech or Braille.

“It would make a huge difference to me to have equipment that would let me listen to and dictate written words, or produce written documents in another accessible manner,” testified the blind prisoner. He added that such accommodations “would finally let me properly prepare for my parole hearing with the privacy, independence, and dignity that all humans deserve.”

Similarly, California routinely uses video cameras during parole proceedings, including when it conducted hearings remotely during the coronavirus pandemic. But prison policy has prohibited videotaping the hearings, including sign language translations that some deaf prisoners rely on to understand the proceedings.

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The deaf-since-birth prisoner, for example, testified that he also doesn't speak, his primary method of communication is American Sign Language, and his English is so poor that written transcripts do him no good. He advocated for recorded sign language translations of the hearings and related documents that he could review whenever he wanted, in the same way that other inmates can review written text.

Wilken ordered prison officials to comply.

“They need to be able to watch it later, not read it later,” said Grunfeld. “It's going to make a huge difference in the lives of deaf signers.”

The department recently acquired 100 portable electronic video magnifiers, at a cost of $1,100 each, that prisoners with low vision can check out to use in their cells. The technology will augment similar devices in prison libraries that prisoners say aren't private and can be used only during libraries' limited hours.

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Wilken said officials acquired the magnifiers only after prodding by prisoners and their attorneys.

Grunfeld said the judge's detailed order, which includes requirements like better assistance from attorneys, will “make sure that people with disabilities are on an equal footing as people who don't have disabilities.”

“My colleagues and I have been working for several years to persuade CDCR to adopt this technology, and it's been slow-going. But they've gradually accepted that they do need to do this,” Grunfeld said. “It's long past due, but at least it's coming.”

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

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——————————
By: Don Thompson
Title: California Fails to Adequately Help Blind and Deaf Prisoners, US Judge Rules
Sourced From: kffhealthnews.org//article/california-prisons-blind-deaf-technology/
Published Date: Fri, 12 Apr 2024 09:00:00 +0000

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FDA Urged To Relax Decades-Old Tissue Donation Restrictions for Gay and Bisexual Men

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Rae Ellen Bichell
Fri, 24 May 2024 09:00:00 +0000

The federal in 2020 and 2023 changed who it said could safely organs and blood, reducing the restrictions on men who have had sex with another man.

But the FDA's restrictions on donated tissue, a catchall term encompassing everything from a person's eyes to their skin and ligaments, remain in place. Advocates, lawmakers, and groups focused on removing barriers to cornea donations, in particular, said they are frustrated the FDA hasn't heeded their calls. They want to align the guidelines for tissue donated by gay and bisexual men with those that apply to the rest of the human body.

Such groups have been asking the FDA for years to reduce the deferral period from five years to 90 days, meaning a man who has had sex with another man would be able to donate tissue as long as such sex didn't occur within three months of his .

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One of the loudest voices on lightening the restrictions is Sheryl J. Moore, who has been an advocate since her 16-year-old son's death in 2013. Alexander “AJ” Betts Jr.'s internal organs were successfully donated to seven people, but his eyes were rejected because of a single question asked by the donor network: “Is AJ gay?”

Moore and a Colorado doctor named Michael Puente Jr. started a campaign called “Legalize Gay Eyes” and together got the attention of national eye groups and lawmakers.

Puente, a pediatric ophthalmologist with the University of Colorado School of Medicine and 's Hospital Colorado, said the current patchwork of donor guidelines is nonsensical considering advancements in the ability to test potential donors for HIV.

“A gay man can donate their entire heart for transplant, but they cannot donate just the heart valve,” said Puente, who is gay. “It's essentially a categorical ban.”

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The justification for these policies, set 30 years ago as a means of preventing HIV transmission, has been undercut by the knowledge gained through scientific progress. Now, they are unnecessary and discriminatory in that they focus on specific groups of people rather than on specific behaviors known to heighten HIV risk, according to those who advocate for changing them.

Since 2022, the FDA's Center for Biologics Evaluation and Research has put changes to the tissue guidance on its agenda but has yet to act on them.

“It is simply unacceptable,” Rep. Joe Neguse (D-Colo.) said in a statement. He was one of dozens of members who signed a letter in 2021 that said the current deferral policies perpetuate stigma against gay men and should be based on individualized risk assessments instead.

“FDA policy should be derived from the best available science, not historic bias and prejudice,” the letter read.

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The FDA said in a statement to KFF Health that, “while the absolute risk transmission of HIV due to ophthalmic surgical procedures appears to be remote, there are still relative risks.”

The agency routinely reviews donor screening and testing “to determine what changes, if any, are appropriate based on technological and evolving scientific knowledge,” the statement said. The FDA provided a similar response to Neguse in 2022.

In 2015, the FDA got rid of a policy dubbed the “blood ban,” which barred gay and bisexual men from donating blood, before replacing it in 2023 with a policy that treats all prospective donors the same. Anyone who, in the past three months, has had anal sex and a new sexual partner or more than one sexual partner is not to donate. An FDA study found that, while men who have sex with men make up most of the nation's new HIV diagnoses, a questionnaire was enough to effectively identify low-risk versus high-risk donors.

The U.S. Public Health Service adjusted the guidelines for organ donation in 2020. Nothing prevents sexually active gay men from donating their organs, though if they've had sex with another man in the past 30 days — down from a year — the patient set to the organ can decide whether or not to accept it.

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But Puente said gay men like him cannot donate their corneas unless they were celibate for five years prior to their death.

He found that, in one year alone, at least 360 people were rejected as cornea donors because they were men who had had sex with another man in the past five years, or in the past year in the case of Canadian donors.

Corneas are the clear domes that protect the eyes from the outside world. They have the look and consistency of a transparent jellyfish, and transplanting one can restore a person's sight. They contain no blood, nor any other bodily fluid capable of transmitting HIV. Scientists suspect that's why there are no known cases of a patient contracting HIV from a cornea transplant, even when those corneas came from donors of organs that did infect recipients.

Currently, all donors, whether of blood, organs, or tissue, are tested for HIV and two types of hepatitis. Such tests aren't perfect: There is still what scientists call a “window period” following infection during which the donor's body has not yet produced a detectable amount of virus.

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But such windows are now quite narrow. Researchers with the Centers for Disease Control and Prevention found that nucleic acid tests, which are commonly used to screen donors, are unlikely to miss someone HIV unless they acquired it in the two weeks preceding donation. Another study estimated that even if someone had sex with an HIV-positive person a couple of weeks to a month before donating, the odds are less than 1 in a million that a nucleic acid test would miss that infection.

“Very low, but not zero,” said Sridhar Basavaraju, who was one of the researchers on that study and directs the CDC's Office of Blood, Organ, and Other Tissue Safety. He said the risk of undetected hepatitis B is slightly higher “but still low.”

At least one senior FDA official has indirectly agreed. Peter Marks, who directs the FDA's Center for Biologics Evaluation and Research, co-authored a report last year that said “three months amply covers” the window period in which someone might have the virus but at levels too low for tests to pick up. Scott Haber, director of public health advocacy at the American Academy of Ophthalmology, said his group's stance is that the tissue donation guideline “should be at least roughly in alignment” with that for blood donations.

Kevin Corcoran, who leads the Eye Bank Association of America, said the five-year abstinence required of corneal donors who are gay or bisexual isn't just “badly out of date” but also impractical, requiring grieving relatives to recall five years of their loved one's sexual history.

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That's the situation Moore found herself in on a July day in 2013.

Her son loved anime, show tunes, and drinking pop out of the side of his mouth. He was bad at telling jokes but good at helping people: Betts once replaced his little sister's lost birthday money with his own savings, she said, and enthusiastically chose to be an organ donor when he got his driver's license. Moore remembered telling her son to ignore the harassment by antigay bigots at school.

“The kids in show choir had told him he's going to hell for being gay, and he might as well just kill himself to save himself the time,” she recalled.

That summer, he did. At the hospital, as medical staff searched for signs of brain activity in the boy before he died, Moore found herself answering a list of questions from Iowa Donor Network, including, she recalled: “Is AJ gay?”

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“I remember very vividly saying to them, ‘Well, what do you mean by, “Was he gay?” I mean, he's never had penetrative sex,'” she said. “But they said, ‘We just need to know if he was gay.' And I said, ‘Yes, he identified as gay.'”

The Iowa Donor Network said in a statement that the organization can't comment on Moore's case, but said, “We sincerely hope for a shift in FDA policy to align with the more inclusive approach seen in blood donation guidelines, enabling us to honor the of all individuals who want to save lives through organ and tissue donation.”

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Moore said her son's organs helped save or prolong the lives of seven other people, including a boy who received his heart and a middle-aged woman who received his liver. Moore sometimes exchanges messages with her on Facebook.

She found out a year later that her son's corneas were rejected as donor tissue because of that conversation with Iowa Donor Network about her son's sexuality.

“I felt like they wasted my son's body parts,” Moore said. “I very much felt like AJ was continuing to be bullied beyond the grave.”

——————————
By: Rae Ellen Bichell
Title: FDA Urged To Relax Decades-Old Tissue Donation Restrictions for Gay and Bisexual Men
Sourced From: kffhealthnews.org/news/article/tissue-donation-rules-fda-gay-bisexual-men-cornea-transplant/
Published Date: Fri, 24 May 2024 09:00:00 +0000

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The Case of the Armadillo: Is It Spreading Leprosy in Florida?

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Sam Ogozalek, Tampa Bay Times
Fri, 24 May 2024 09:00:00 +0000

GAINESVILLE, Fla. — In an open-air barn at the edge of the University of Florida, veterinarian Juan Campos Krauer examines a dead armadillo's footpads and ears for signs of infection.

Its claws are curled tight and covered in blood. Campos Krauer thinks it was struck in the head while crossing a nearby road.

He then runs a scalpel down its underside. He removes all the important organs: heart, liver, kidneys. Once the specimens are bottled up, they're destined for an ultra-cold freezer in his lab at the college.

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Campos Krauer plans to test the armadillo for leprosy, an ancient illness also known as Hansen's disease that can to nerve and disfigurement in humans. He and other scientists are to solve a medical mystery: why Central Florida has become a hot spot for the age-old bacteria that cause it.

Leprosy remains rare in the United States. But Florida, which often reports the most cases of any state, has seen an uptick in . The epicenter is east of Orlando. Brevard County reported a staggering 13% of the nation's 159 leprosy cases in 2020, according to a Tampa Bay Times analysis of state and federal data.

Many questions about the phenomenon remain unanswered. But leprosy experts believe armadillos play a role in spreading the illness to people. To better understand who's at risk and to prevent infections, about 10 scientists teamed up last year to investigate. The group includes researchers from the University of Florida, Colorado State University, and Emory University in Atlanta.

“How this transmission is , we really don't know,” said Ramanuj Lahiri, chief of the laboratory research branch for the National Hansen's Disease Program, which studies the bacteria involved and cares for leprosy patients across the country.

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‘Nothing Was Adding Up'

Leprosy is believed to be the oldest human infection in history. It probably has been sickening people for at least 100,000 years. The disease is highly stigmatized — in the Bible, it was described as a punishment for sin. In more modern times, patients were isolated in “colonies” around the world, including in Hawaii and Louisiana.

In mild cases, the slow-growing bacteria cause a few lesions. If left untreated, they can paralyze the hands and feet.

But it's actually difficult to fall ill with leprosy, as the infection isn't very contagious. Antibiotics can cure the ailment in a year or two. They're available for free through the federal government and the World Health Organization, which launched a campaign in the 1990s to eliminate leprosy as a public health problem.

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In 2000, reported U.S. cases dropped to their lowest point in decades with 77 infections. But they later increased, averaging about 180 per year from 2011 to 2020, according to data from the National Hansen's Disease Program.

During that time, a curious trend emerged in Florida.

In the first decade of the 21st century, the state logged 67 cases. Miami-Dade County noted 20 infections — the most of any Florida county. The vast majority of its cases were acquired outside the U.S., according to a Times analysis of Florida Department of Health data.

But over the next 10 years, recorded cases in the state more than doubled to 176 as Brevard County took center stage.

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The county, whose population is about a fifth the size of Miami-Dade's, logged 85 infections during that time — by far the most of any county in the state and nearly half of all Florida cases. In the previous decade, Brevard noted just five cases.

Remarkably, at least a quarter of Brevard's infections were acquired within the state, not while the individuals were abroad. India, Brazil, and Indonesia diagnose more leprosy cases than anywhere, over 135,000 infections combined in 2022 alone. People were getting sick even though they hadn't traveled to such areas or been in close contact with existing leprosy patients, said Barry Inman, a former epidemiologist at the Brevard health department who investigated the cases and retired in 2021.

“Nothing was adding up,” Inman said.

A few patients recalled touching armadillos, which are known to carry the bacteria. But most didn't, he said. Many spent a lot of time outdoors, including lawn workers and avid gardeners. The cases were usually mild.

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It was difficult to nail down where people got the illness, he added. Because the bacteria grow so slowly, it can take anywhere from nine months to 20 years for symptoms to begin.

Amoeba or Insect Culprits?

Heightened awareness of leprosy could play a role in Brevard's groundswell of cases.

Doctors must report leprosy to the health department. Yet Inman said many in the county didn't know that, so he tried to educate them after noticing cases in the late 2000s.

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But that's not the sole factor at play, Inman said.

“I don't think there's any doubt in my mind that something new is going on,” he said.

Other parts of Central Florida have also recorded more infections. From 2011 to 2020, Polk County logged 12 cases, tripling its numbers compared with the previous 10 years. Volusia County noted 10 cases. It reported none the prior decade.

Scientists are honing in on armadillos. They suspect the burrowing critters may indirectly cause infections through soil contamination.

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Armadillos, which are protected by hard shells, serve as good for the bacteria, which don't like heat and can thrive in the animals whose body temperatures range from a cool 86-95 degrees.

Colonists probably brought the disease to the New World hundreds of years ago, and somehow armadillos became infected, said Lahiri, the National Hansen's Disease Program scientist. The nocturnal mammals can develop lesions from the illness just as humans can. More than 1 million armadillos occupy Florida, estimated Campos Krauer, an assistant professor in the University of Florida's Department of Large Animal Clinical Sciences.

How many carry leprosy is unclear. A study published in 2015 of more than 600 armadillos in Alabama, Florida, Georgia, and Mississippi found that about 16% showed evidence of infection. Public health experts believe leprosy was previously confined to armadillos west of the Mississippi River, then spread east.

Handling the critters is a known hazard. Lab research shows that single-cell amoebas, which live in soil, can also carry the bacteria.

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Armadillos love to dig up and eat earthworms, frustrating homeowners whose yards they damage. The animals may shed the bacteria while hunting for food, passing it to amoebas, which could later infect people.

Leprosy experts also wonder if insects spread the disease. Blood-sucking ticks might be a culprit, lab research shows.

“Some people who are infected have little to no exposure to the armadillo,” said Norman Beatty, an assistant professor of medicine at the University of Florida. “There is likely another source of transmission in the .”

Campos Krauer, who's been searching Gainesville streets for armadillo roadkill, wants to gather infected animals and let them decompose in a fenced-off area, allowing the remains to soak into a tray of soil while flies lay eggs. He hopes to test the dirt and larvae to see if they pick up the bacteria.

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Adding to the intrigue is a leprosy strain found only in Florida, according to scientists.

In the 2015 study, researchers discovered that seven armadillos from the Merritt Island National Wildlife Refuge, which is mostly in Brevard but crosses into Volusia, carried a previously unseen version of the pathogen.

Ten patients in the region were stricken with it, too. At the genetic level, the strain is similar to another type found in U.S. armadillos, said Charlotte Avanzi, a Colorado State University researcher who specializes in leprosy.

It's unknown if the strain causes more severe disease, Lahiri said.

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Reducing Risk

The public should not panic about leprosy, nor should people race to euthanize armadillos, researchers warn.

Scientists estimate that over 95% of the global human population has a natural ability to ward off the disease. They believe months of exposure to respiratory droplets is needed for person-to-person transmission to occur.

But when infections do happen, they can be devastating.

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“If we better understand it,” Campos Krauer said, “the better we can learn to live with it and reduce the risk.”

The new research may also insight for other Southern states. Armadillos, which don't hibernate, have been moving north, Campos Krauer said, reaching areas like Indiana and Virginia. They could go farther due to climate change.

People concerned about leprosy can take simple precautions, medical experts say. Those working in dirt should wear gloves and wash their hands afterward. Raising garden beds or surrounding them with a fence may limit the chances of soil contamination. If digging up an armadillo burrow, consider wearing a face mask, Campos Krauer said.

Don't play with or eat the animals, added John Spencer, a scientist at Colorado State University who studies leprosy transmission in Brazil. They're legal to hunt year-round in Florida without a license.

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Campos Krauer's team has so far examined 16 dead armadillos found on Gainesville area roads, more than 100 miles from the state's leprosy epicenter, trying to get a preliminary idea of how many carry the bacteria.

None has tested positive yet.

This article was produced through a partnership between KFF Health News and the Tampa Bay Times.

——————————
By: Sam Ogozalek, Tampa Bay Times
Title: The Case of the Armadillo: Is It Spreading Leprosy in Florida?
Sourced From: kffhealthnews.org/news/article/leprosy-armadillo-florida-cases-on-rise-research/
Published Date: Fri, 24 May 2024 09:00:00 +0000

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KFF Health News’ ‘What the Health?’: Anti-Abortion Hard-Liners Speak Up

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Thu, 23 May 2024 19:15:00 +0000

The Host

Julie Rovner
KFF Health


@jrovner


Read Julie's stories.

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Julie Rovner is chief Washington correspondent and host of KFF Health News' weekly health policy news , “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “ Politics and Policy A to Z,” now in its third edition.

With abortion shaping up as a key issue for the November elections, the movement that united to overturn Roe v. Wade is divided over going further, faster — including by punishing those who have abortions and banning contraception or IVF. Politicians who oppose abortion are already experiencing backlash in some states.

Meanwhile, bad actors are bilking the health system in various new ways, from switching people's insurance plans without their consent to pocket additional commissions, to hacking the records of major health systems and demanding millions of dollars in ransom.

This week's panelists are Julie Rovner of KFF Health News, Alice Miranda Ollstein of Politico, Rachel Roubein of The Washington Post, and Joanne Kenen of the Johns Hopkins schools of public health and nursing and Politico Magazine.

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Panelists

Alice Miranda Ollstein
Politico


@AliceOllstein


Read Alice's stories.

Joanne Kenen
Johns Hopkins and Politico

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@JoanneKenen


Read Joanne's articles.

Rachel Roubein
The Washington Post


@rachel_roubein

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Read Rachel's stories.

Among the takeaways from this week's episode:

  • It appears that abortion opponents are learning it's a lot easier to agree on what you're against than for. Now that the constitutional right to an abortion has been overturned, political are contending with vocal groups that want to push further — such as by banning access to IVF or contraception.
  • A bill designating abortion pills as controlled substances targets people in the state, where abortion is banned, who are finding ways to get the drug. And abortion providers in Kansas are suing over a new that requires patients to report their reasons for an abortion. Such state laws have a cumulative chilling effect on abortion access.
  • Some Republican lawmakers seem to be to dodge voter dissatisfaction with abortion restrictions in this election year. Sen. Ted Cruz of Texas and Sen. Katie Britt of Alabama introduced legislation to protect IVF by pulling Medicaid funding from states that ban the fertility procedure — but it has holes. And Gov. Larry Hogan of Maryland declared he is pro-choice, even though he mostly dodged the issue during his eight years as governor.
  • Former President Donald Trump is in the news again for comments that seemed to the door open to restrictions on contraception — which may be the case, though he is known to make such vague policy suggestions. Trump's policies as president did restrict access to contraception, and his allies have proposed going further.

Also this week, Rovner interviews Shefali Luthra of The 19th about her new book on abortion in post-Roe America, “Undue Burden.”

Plus, for “extra credit,” the panelists suggest health policy stories they read this week that they think you should read, too: 

Julie Rovner: The 19th's “What Happens to Clinics After a State Bans Abortion? They Fight To Survive,” by Shefali Luthra and Chabeli Carrazana. 

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Alice Miranda Ollstein: Stat's “How Doctors Are Pressuring Sickle Cell Patients Into Unwanted Sterilizations,” by Eric Boodman.  

Rachel Roubein: The Washington Post's “What Science Tells Us About Biden, Trump and Evaluating an Aging Brain,” by Joel Achenbach and Mark Johnson.  

Joanne Kenen: ProPublica's “Toxic Gaslighting: How 3M Executives Convinced a Scientist the Forever Chemicals She Found in Human Blood Were Safe,” by Sharon Lerner; and The Guardian's “Microplastics Found in Every Human Testicle in Study,” by Damian Carrington. 

Also mentioned on this week's podcast:

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Credits

Francis Ying
Audio producer

Emmarie Huetteman
Editor

To hear all our podcasts, click here.

And subscribe to KFF Health News' “What the Health?” on SpotifyApple PodcastsPocket Casts, or wherever you listen to podcasts.

——————————
Title: KFF Health News' ‘What the Health?': Anti-Abortion Hard-Liners Speak Up
Sourced From: kffhealthnews.org/news/podcast/anti-abortion-hard-liners-speak-up/
Published Date: Thu, 23 May 2024 19:15:00 +0000

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