Meta, Hospitals Sued for Sharing Private Medical Info

https://www.medpagetoday.com/special-reports/features/100050

The analytics tool “Meta Pixel” allegedly collected and shared medical conditions to target ads

Meta Platforms (formerly known as Facebook, Inc.), the University of California San Francisco (UCSF) Medical Center, and Dignity Health Medical Foundation are being targeted by a class action lawsuit centered on an anonymous patient whose lawyers allege her private medical information was unlawfully taken from her and used for profit.

The “Defendants’ action constitute an extreme invasion of Plaintiff and Class members’ right to privacy and violate federal and state statutory and common law,” her attorneys wrote in the complaint.

This case is part of a larger issue around data sharing and private medical information that’s become an increasing concern for patients and doctors alike.

The plaintiff, known as Jane Doe in the lawsuit, began receiving emails and seeing targeted ads on Facebook related to her medical conditions after she had scheduled appointments and contacted doctors using UCSF’s and Dignity’s patient portals. What she didn’t know was that they had a piece of software called “Meta Pixel” tucked into their code.

Meta Pixel, as Meta describes it to potential users, is a “snippet of JavaScript code that allows you to track visitor activity on your website.” UCSF Health does note in their website privacy statement that they gather personal medical information about its users for a number of reasons, including to send “product and service information” and to “improve the UCSF Health website user experience,” though the statement also says that the health system won’t share personal information “without your consent other than as required by laws.”

UCSF Health’s policy also acknowledges that they “may” use third parties including “Facebook Pixel” to collect information from the website, noting that “these companies collect information from across the internet and are not controlled or managed by UCSF.”

The only way to opt out of this data collection is to go to Facebook’s website and change the privacy settings.

Moreover, these policies only apply to the consumer-facing website, which is separate from the patient portal, MyChart, where more private data are stored, like health records, test results, and diagnoses. MyChart’s privacy policy states that “the information you provide on this web site is protected by federal laws,” but otherwise directs patients to customer service for more information.

According to the complaint, “when Plaintiff Doe logged into Healthcare Defendants’ patient portal, there was no indication that Meta Pixel was embedded or that it would collect her sensitive medical information.”

Meta has implied that they draw the line at accepting sensitive medical information from those that use their tool — and that this kind of data sharing goes against their own policies.

A Meta spokesperson sent MedPage Today links to its Meta Pixel policies in an email. According to its page on “Restricted Meta Business Tools Data” (Meta Pixel is one of their “business tools”), “advertisers should not share Business Tools Data with Meta that they know or reasonably should know is either from or about children under the age of 13, or includes health or financial information, or other categories of sensitive information.”

They define “sensitive health information” on another page, which includes information on diseases, medical conditions, and injuries — exactly what the lawsuit claims they did indeed access and use to send Doe ads on Facebook.

However, Meta’s policies specify that they can gather personal contact information from these sites and then match it with “Meta user accounts” — meaning whatever information Meta does gather can be used to then find the user’s Facebook account and tailor Facebook ads specifically to that user.

The lawsuit argues that Meta is violating its own policies, which “were not enforced or entirely ineffective.” They quote documents leaked from Meta in 2021 in which a Meta engineer acknowledged that “we do not have adequate level of control and explainability over how our systems use data.”

The ads the patient received after she used the portals to receive test results and diagnoses for her heart and knee conditions were specific enough to be from the patient portal itself: one from “Dr. Livingood” referenced “your heart condition.” Another for the “UpWellness Shop” announced “30-Sec. Joint Pain Trick ‘Greases’ Bone-on-Bone Knee Pain.” Emailed ads crept into her inbox, including one about treatments for cardiovascular disease.

“She has received so many of the targeted emails that she created a new email account separate from the one associated with her Facebook account to avoid the advertisements,” Melissa Nafash, JD, of Labaton Sucharow, one of the firms representing Doe, wrote in an email to MedPage Today. “This is an overwhelming invasion of Plaintiff Doe’s privacy and we look forward to representing her and the putative class in this important case.”

The lawsuit also argues that none of the defendants had a right to collect or use, let alone share, sensitive medical information that’s protected by various California laws and HIPAA, which they say “does not permit the use and disclosure of protected health information to Meta for use in targeted advertising.”

A spokesperson for UCSF told MedPage Today in an email that they can’t comment on pending litigation. Dignity Health Medical Foundation did not respond to requests for comment in time for publication.

Filed under: General Problems | 1 Comment »

Things are getting interesting with the Fed AG office and President Biden and his use of Executive Orders to impose his beliefs on states and trying to override and invalidate the SCOTUS recently ruling on the states have the authority to determine the issues around abortion.  It appear that AG Garland in trying to apply or enforce Biden’s Executive Order concerning the states’ rights to determine what is – or is not – allowed in their state in regards to abortion.

It would appear that the Biden’s EO and AG Garland is attempting to use Federal non-discriminating rules. The video below talks addresses the person experiencing harm for failure of a healthcare professional to provide appropriate care.  The paragraph below is from Biden’s EO. The chronic pain community has documentation that the failure of a prescriber to properly address a pt’s pain – resulting in under/untreated pain, can result in numerous complication of preexisting comorbidity issues and/or causing the pt to have new/additional comorbidity issues.

Could it be extrapolated that the existing CDC 2016 opiate dosing guidelines and the soon to be published 2022 CDC opiate dosing guidelines are violating the pt’s right to appropriate care ?  Could major healthcare corporations ( hospitals, insurance/PBM, chain pharmacies ) imposing some sort of limitation on what their policies and procedures that requires/forces their employees to force reduction and/or impose daily dosing limits.

The chart below elaborates on the health complications on pts because of under/untreated pain and the hyperlink below explains that the MME system has no science nor double blind studies supporting the appropriateness in pain management, especially for those pts suffering from chronic pain.

The Control Substance Act states that NO ONE can prescribe a controlled substances to a pt without doing a in person physical exam and one of the basics of the practice of medicine is the starting/changing/stopping a pt’s therapy.  Could one come to the conclusion that all of these entities are both violating the Controlled Substance Act and practicing medicine without a license.

Should all those chronic pain pts who have their pain meds reduced, limited or stopped, begin to file complaints with the AG Garland’s office, for failure to comply with FED non-discrimination rules ?  While Biden’s EO is primarily dealing with the abortion issue…  his EO talks about providers not complying with non-discrimination rules.

https://www.medpagetoday.com/obgyn/abortion/100053

Ensure that healthcare providers follow federal non-discrimination laws:

That could include helping providers who are unsure of their obligations now that the Supreme Court has overturned Roe v. Wade; meeting with providers to explain their obligations as well as the consequences of not complying with non-discrimination rules; and “issuing additional guidance or taking other appropriate action in response to any complaints or reports of non-compliance with federal non-discrimination laws.”

https://www.acsh.org/news/2022/03/01/true-story-morphine-milligram-equivalents-mme-16154

Filed under: General Problems | 2 Comments »

Senator Manchin has tried a number of times to get a FEDERAL TAX ON PHARMA OPIATES and each time he has FAILED and WV just reached a settlement with the major drug wholesalers for 400 million dollars https://www.foxbusiness.com/economy/west-virginia-reaches-400-million-settlement-opioid-distributors

It is pathetic how they use the English Language…  they talk about less opiate Rxs and then in the next sentence they talk about DEATHS TIED TO THE MEDICATIONS – they didn’t say “deaths tied to opiate medications” and then they get to the next sentence with the statement that “STUDIES SUGGEST “.   I would bet that a study could be done that would SUGGEST that people that die in motorcycle accidents started out riding bicycles.

Should our government make decision that could affect the lives and quality of life of tens of millions of our citizens based on a study that SUGGESTS a particular outcome.  The CDC, has stated that there is an estimated 15,000/yr deaths from the use/abuse of NSAIDS…  Each year 100,000 die from the use/abuse of the drug alcohol and 450,000 die from the use/abuse of Nicotine and neither of these meds have a valid medicinal use. Maybe because there is a very healthy tax revenue stream attached to those two “drugs”.. is the reason that – as a society – we accept all those deaths ?

Opioid prescriptions have fallen about 40% in the last decade amid restrictions by hospitals, insurers and state officials. But deaths tied to the medications remain at 13,000 to 14,000 per year. And studies suggest people who become addicted to opioids continue to start with prescription opioids, before switching to cheaper heroin and illegally made fentanyl.

‘We still have a really huge problem’: FDA’s promised ‘sweeping’ opioid review faces skeptics in Congress and among patient advocates

https://www.marketwatch.com/story/we-still-have-a-really-huge-problem-fdas-promised-sweeping-opioid-review-faces-skeptics-in-congress-and-among-patient-advocates-01659135675

Senate Democrat Joe Manchin of West Virginia says he requested an update in April on the FDA’s progress toward policy recommendations but didn’t receive a response

As U.S. opioid deaths mounted in 2016, the then-incoming head of the Food and Drug Administration promised a “sweeping review” of prescription painkillers in hopes of reversing the worst overdose epidemic in American history.

Dr. Robert Califf even personally commissioned a report from the nation’s top medical advisers that recommended reforms, including potentially removing some drugs from the market. But six years later, opioids are claiming more lives than ever, and the FDA has not pulled a single drug from pharmacy shelves since the report’s publication. In fact, the agency continues putting new painkillers on the market — six in the last five years.

Now Califf is back in charge at the FDA, and he faces skepticism from lawmakers, patient advocates and others about his long-promised reckoning for drugs such as OxyContin and Vicodin, which are largely blamed for sparking a two-decade rise in opioid deaths.

“All the concerns that we had at the time on opioids are still there. We still have a really huge problem,” said Richard Bonnie, a University of Virginia public health expert who chaired the committee that wrote the report.

Bonnie and his co-authors say the FDA seems to have incorporated several of their recommendations into recent decisions, including a broader consideration of a drug’s public health risks. But they say there is more to be done.

In an interview with the Associated Press, Califf said a new internal review of opioids has been underway for months and that the public will soon “be hearing a lot more about this.” While the review will look at past FDA decisions, Califf suggested the focus will be on future policy.

“It seems like people love sort of looking back and fault-finding, but I’m much more interested in learning so we can go forward and make the best decisions for what we need to do today,” said Califf, who split his time between Duke University and working for Google after leaving the FDA in 2017 following President Donald Trump’s election.

The 453-page report issued five years ago this month by the National Academies of Sciences laid out a strategy for reducing overprescribing and misuse of opioids, with particular focus on the FDA.

From the archives (June 2017): Opioid addiction diagnoses rose nearly 500% in the last seven years

At the center of the recommendations was a proposal for the FDA to reassess the dozens of opioids being sold to determine whether their overall benefits in treating pain outweigh their risks of addiction and overdose. Those that don’t should be removed from the market, the group said.

The lack of swift action underscores the glacial pace of federal regulation and the legal obstacles to clawing back drugs previously deemed safe and effective.
“It’s really hard for the agency to get a drug taken off the market once it’s been approved,” said Margaret Riley, a University of Virginia food and drug law professor who consulted on the report.

Last year, U.S. overdose deaths soared to a record of 107,000, driven overwhelmingly by fentanyl and other illegal opioids.

‘The question to me is whether the agency will actually have the gumption to use those tools to start pulling drugs.’

— Margaret Riley, University of Virginia

Opioid prescriptions have fallen about 40% in the last decade amid restrictions by hospitals, insurers and state officials. But deaths tied to the medications remain at 13,000 to 14,000 per year. And studies suggest people who become addicted to opioids continue to start with prescription opioids, before switching to cheaper heroin and illegally made fentanyl.

“If Dr. Califf is serious about addressing the drug epidemic, the FDA should immediately implement” the report’s recommendations, Sen. Joe Manchin of West Virginia said in a statement.

Manchin told the AP that he requested an update in April on the FDA’s progress on the recommendations but didn’t receive a response. He was one of five Democrats from hard-hit opioid states who voted against Califf’s confirmation in February.

In response to questions about the recommendations, the FDA provided a list of actions it has taken on opioids, some which predated the report. The agency said it has acted on “nearly all” of the recommendations, by enhancing prescriber education and labeling, convening meetings and improving data collection.

“I think what you’ve seen is the agency grabbing at some of the low-hanging fruit and only to a certain level,” Riley said.

Despite heightened scrutiny, the FDA continues putting new painkillers on the market. Many of the drugs have formulations designed to make them harder to misuse, such as hard-to-crush coatings that discourage snorting or injecting.

Califf has said the FDA is bound by its regulations: Companies need only show that their drugs work better than a placebo, and the agency can’t require new opioids to be safer or more effective than ones already on the market. He told Senate lawmakers in April that doing so might require legislation from Congress.

One of the report authors disagreed. “I think the FDA has a lot of flexibility at this point to say, ‘Look, given these circumstances we don’t think that a placebo-controlled trial would be adequate,’ ” said Dr. Aaron Kesselheim, a lawyer and professor of medicine at Harvard Medical School.

As for older opioids like OxyContin, Califf says that as the agency gets more evidence on opioids’ risks, it will “aggressively look at relabeling.”

But delays in getting that evidence illustrate just how slowly the FDA process moves. It’s been nearly 10 years since the agency required makers of long-acting opioids to conduct a dozen studies of their drugs’ risks and effectiveness.

The main clinical trial looking at opioids for chronic pain has been delayed since 2019, due to repeated changes to its design. And results from seven other studies released in 2020 don’t give a clear picture of whether the drugs are truly safe and effective for long-term use.

“We’ve got to have the data, and we can’t accept excuses that it’s hard to do,” Califf said. “That’s not going to be acceptable.”

Riley said the data the FDA is seeking will be critical to providing the evidence needed to remove opioids from the market, which would likely face years of industry pushback.

“The question to me is whether the agency will actually have the gumption to use those tools to start pulling drugs,” Riley said. “Do they have the will to do it?”

Filed under: General Problems | 4 Comments »

One last trip: Gabriella Walsh’s decision to die — and celebrate life — on her own terms

https://www.latimes.com/california/story/2022-08-01/death-with-dignity-gabriella

Gabriella Walsh knew she wanted to die on a Saturday.

She’d settled on July 16, dressing that morning in a flower crown and a T-shirt with a picture of a dragonfly, an image that had comforted her in recent weeks. She took a deep inhale from a bottle of lavender oil and listened to a playlist of sea sounds.

Earlier in the morning, friends and family nuzzled up against her in bed. Rest easy, they told her, and keep wandering.

“I just feel like I’m going on a trip,” she said calmly.
Two women sit on a bed and one holds a phone
Melanda Woo, left, embraces Gabriella a few hours before Gabriella dies through medical aid.
(Dania Maxwell / Los Angeles Times)

Within two hours, she would drink a fatal dose of medications prescribed under California’s death-with-dignity law, which allows some terminally ill patients to request drugs to end their lives.
The option had given her profound comfort in her final weeks — as had knowing that, in the end, she’d have Jack Barsegyan, the registered nurse who managed her hospice care, and Jill Schock, a death doula, at either side of her bed.

“My Jack and Jill,” she often called them.

Born Gabriela del Carmen Torres Acosta on the first Friday of 1958, death was, perhaps, her earliest memory, thus stripping away much of her fear of it.

When she was 2, she stumbled upon her grandfather slumped lifeless in the hallway of their family home in Quillota, Chile, an agricultural community north of the capital. A few months later, a chance illness — gorging on so many strawberries that she got severe diarrhea — led to an appointment where a doctor discovered that a small opening in her heart had never closed properly after her birth. She soon underwent open-heart surgery.

Another five years passed, and during their bedtime ritual, her father asked her to let their hug linger, sensing it might be their last.

“Este puede ser nuestro último abrazo.”
A framed photo of a little girl and man
A photograph of Gabriella and her father was one of the last mementos she had on display in her home before dying.
(Dania Maxwell / Los Angeles Times)

He died of a stroke within hours, and his body was transported home from the hospital, as was often the custom then. Once the adults cleared out of the living room, she dragged a chair next to her father’s body, which was covered by a sheet, and rested her small hand on his shoulder. She sat with him for what felt like an hour.

“I had no fear,” she recalled. “I was neutral.”

In junior high, she and her mother moved from Chile to Sherman Oaks, where they reunited with Gabriella’s oldest sister. She now had a new home, a new language and a slightly new name — “Gabriella” with two Ls after officials misspelled it on immigration paperwork.

After graduating from Van Nuys High School — where she met a group of girlfriends she stayed close with through the years — she got a job as a medical assistant helping a podiatrist who worked at convalescent homes. The patients often looked unkempt and rarely had visitors.

“That’s not how I want to have my last days,” she thought, then 19.

Before long, a co-worker introduced Gabriella to her brother, who became Gabriella’s husband. They wed at a chapel on Topanga Canyon Boulevard. A little over a year later, when she was 23, she gave birth to a little girl she named after actress Natalie Wood. She felt immediately in awe of her daughter, but also deeply unprepared to be a mother.

Through the years, she worked in advertising and as a personal assistant and, later in life, as an interpreter and translator. She was, for a time, a born-again Christian, a faith she followed her ex-husband into and left around the time they separated. Later came a yogi phase, another she described as a Buddhist vibe, and then, in the end, nothing at all.

“If there was a chance of something — some connection, some job, some friendship — it was, ‘I’m in. I’m all in,’” recalled her longtime friend Kathy Menzie.

Gabriella lived, for a time, in Miami and Australia, and traveled through Mexico, Guatemala, Costa Rica and the Caribbean, where she sailed on a boat called the Knauty Knott. In the mid-2000s, she visited Amsterdam with an employer-turned-friend who was researching cannabis and steroids in bodybuilders. Maybe she’d return when she was older, she thought, knowing that the Netherlands had a death-with-dignity law on the books.

In her final weeks, while paring down belongings, she found a folded piece of graph paper with names and short descriptions of long-ago lovers.

A list Gabriella made details the many places she has lived and visited. The 47th address she lived at was her last, a studio her friend let her stay in rent-free.

(Dania Maxwell / Los Angeles Times)

Of all her experiences, her purest joy came in 2003, when her daughter picked her up at Los Angeles International Airport after Gabriella had spent several months working in Melbourne. The moment she first locked eyes with her granddaughter, then 3 months old, felt transcendent.

“Just magical.”

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By the fall of 2021, Gabriella had retired — arthritic pain in her wrists made typing for translation gigs painful — and she yearned to travel.

She did her best to stash away savings from her $1,100-a-month Social Security payments and started sketching an itinerary: three months in Spain, one in Ireland, a few weeks in Chile or Australia. She rented a flat in the Spanish city of Alicante, a friend’s hometown, and purchased a plane ticket for Dec. 27.

On Dec. 9, she went in for a routine mammogram and, minutes later, a radiology oncologist was explaining, in a calm tone, that aggressive cancer in her right breast had “blown out” to her lymph nodes.

Gabriella feels around the tumors in her right breast after a shower. She had just booked a flight for a months-long adventure, beginning in Spain, when she learned she had aggressive breast cancer that soon metastasized into bone cancer. She canceled the trip, moved into a friend’s home and made plans for medical aid in death.

(Dania Maxwell / Los Angeles Times)

The words looped in her mind. She sobbed alone in her car and drove straight to her general practitioner’s office, asking them to set her up with an oncologist.

Insurance calls blurred together and she canceled her trip. With her plan to move out of her current residence in motion, she needed to find a new place, which filled her with anxiety. But soon an old friend offered to let her stay with him at his home in Valencia for a few months.

A PET scan showed tumors on her spine, sternum and hip. Fifteen in total — now officially bone cancer, her oncologist explained at an appointment in March. Prognosis, she knew, was an imperfect science, but she recalled the oncologist saying he thought she had six to eight months to live. She could do hormone therapy, which might slow the progression.

“My life, my body, my death. It’s just my time.”

— Gabriella Walsh

She didn’t want to extend her life, she told him, but to prioritize the quality of the time she had left. In her final months, she shared freely with family and friends about her decision to pursue California’s End of Life Option Act, a law that took effect six years ago, after then-Gov. Jerry Brown, a former Jesuit seminary student who wrestled with the decision, ultimately revealed his support in a public letter.

“In the end,” he wrote, “I was left to reflect on what I would want in the face of my own death.”

Gabriella rubs CBD lotion on her legs to help with pain relief.

(Dania Maxwell / Los Angeles Times)

The law, which was updated in January to streamline some red tape for patients like Gabriella, makes California one of only 10 states, as well as the District of Columbia, to permit medical aid in dying. Despite the leeway written into the California law — physicians can decline to prescribe the fatal cocktail of medications and patients who receive the drugs don’t ultimately have to take them — Gabriella quickly learned that the measure still has many vocal detractors.

June 27, 2022

In mid-May, Schock informed her that a group representing Christian doctors had filed a federal lawsuit against California Atty. Gen. Rob Bonta and other state officials, hoping to invalidate parts of the updated law. Schock and Barsegyan, the nurse at Physicians Preferred Hospice who managed Gabriella’s care, rushed to secure her medications before the next court hearing, which was ultimately postponed. At one point, Gabriella said, her general practitioner even called to plead with her.

“You have to fight. You’re a fighter.”

Conversations like that were uncomfortable, but Gabriella was resolute. The decision gave her a profound peace — a final freedom that she hoped would one day be afforded to people in every state.

“My life, my body, my death,” she said. “It’s just my time.”

The first days after her diagnosis felt like fog.Her mind floated back to the strawberries that may well have saved her life as a toddler and the time, years later, when she was hospitalized with severe heat exhaustion while training for a 5K. She daydreamed about getting a blue parrotlet — maybe she’d name him Freedom and have him released into the sky after she died — and she cherished visits with her daughter and two grandchildren.

Gabriella walks to her front door to pick up a fentanyl delivery. The fentanyl, administered through a patch on her arm, relieves the extreme pain she feels from 15 tumors throughout her body.

(Dania Maxwell / Los Angeles Times)

She learned to steady herself with a cane, knowing that even a short fall could shatter her brittle bones, and she reflected on life lessons that had long eluded her — the way, unless she had a specific goal, she struggled to manage money and how hard she found it to assert her own needs if she thought it would let someone else down.

She caught up with relatives in Chile, reminisced with her ex-husband and began drafting notes to family members she still had unresolved feelings toward. She sometimes craved sopaipillas, a doughy treat commonly eaten on rainy days in Chile, and often thought about Brandon — whom she’d become the legal guardian of several years earlier after her former brother-in-law, who raised the then-teenager, had died — and how he could make her laugh in any circumstance, even this one.

“I’ve lived a magical life,” she said one afternoon in March. “What else can I ask of life?”

Friends flew in from Atlanta, Colorado, Spain and locals showed up with sushi and Krispy Kreme doughnuts and CBD oil for her aching knees. They laughed and cried and sometimes she gave them tarot readings.

Gabriella sings with a group of friends she’s known since high school, Collette Hillier, Linda Fey and Kathy Menzie, on May 21. Later Hillier sent Gabriella a text: “I’ve admired you and your courage but I’ve never admired you as much as I have this month.” Moments like these feel like living funerals for Gabriella, an opportunity for people to say goodbye while she is still alive.

(Dania Maxwell / Los Angeles Times)

On April Fools’ Day, she moved to the 47th — and final — address she’d call home. Menzie, her longtime friend whom she met as a teenager, had offered to let her live for free in a small studio adjacent to her stepfather’s home in Santa Paula. Menzie lived in a separate guest house next door.

When Gabriella first walked in, light shone through the window, casting an abstract, golden shape onto a baby blue comforter. Menzie had set out yellow tulips, Gabriella’s favorite, and dark chocolate with almonds.

July 7, 2022

“What a blessing,” Gabriella whispered.

Menzie zipped in to clear a few final things from a bookshelf, and as she scooped up a Nativity set, two figurines tumbled to the carpet.

“Jesus and Mary!” she shouted.

“No, that’s Joseph,” Gabriella teased.

They both threw their heads back in laughter. Someday soon, Menzie said, I want to take you to the Cajun spot down the street for beignets. Or maybe we’ll get pedicures or go to trivia night?

“We gotta do it sooner rather than later, girl,” Gabriella said.

Soon, the tumor on her hip stung so much it was hot to the touch, and when she lay down to watch TV, a mass along her spine squished like an about-to-burst water balloon. She nibbled on sardines and water crackers or berries with maple syrup, and her painkillers constipated her so badly that the discomfort sometimes triggered anxiety attacks.

Gabriella has her vitals taken by Jack Barsegyan, a nurse who manages her hospice care.

(Dania Maxwell / Los Angeles Times)

Her hospice team upped the dosage of her fentanyl patch, which helped. A few days later, Schock visited.

The 36-year-old death doula, whom Gabriella hired to walk alongside her in her final months, used to work as a chaplain in an emergency room, but disliked the realm of sudden death — a place, where on a Saturday shift she’s never forgotten, a young father who didn’t know he was allergic to bees died of anaphylactic shock after being stung at his son’s soccer game. Cancer was unrelenting — she’d watched it kill her own father in 2015 — but at least patients had the chance to say goodbye.

“What are you doing with this time to get joy out of life?” Schock asked Gabriella during a visit in April.

Walking along the beach sounded taxing, but she would enjoy sitting by the waves. And after a few days of wanting to be alone, she felt up for visitors.

“It’s OK to be more antisocial,” Schock told her. “That’s actually a part of the dying process.”

Gabriella was still experiencing nuggets of joy and they were all tied to connection — a five-hour meal at Nobu in Malibu, seeing Dave Chappelle at the Hollywood Bowl, the friend who knew she ran cold and mailed her an electric blanket.

Gabriella rests in her Santa Paula studio. She said that she was never afraid of death or dying, but that the loneliness she sometimes felt after being diagnosed with terminal cancer was difficult.

(Dania Maxwell / Los Angeles Times)

But she didn’t like where her mind went when she was alone. Detached and exhausted, listening to music became painful, transporting her to lighter times, so she zoned out to audiobooks and binged “The Lincoln Lawyer” on Netflix.

She often fixated on not wanting to burden the people in her life, fearful of asking for too much. And yet, she wanted more — more visits and calls and connections. Feeling disconnected from her dying body, she removed her fentanyl patch for a week.

“I needed to feel.”

Every inch of her small frame, including her hair, ached and scrubbing shampoo into her scalp exhausted her. She pulled up the calendar on her phone, checking to see what she had coming up in the weeks ahead — a loved one’s birthday — but after that she was clear. She called Schock.

Elidia Elizarraraz, a hairdresser down the street from Gabriella, gives her a kiss while blow-drying her hair. Elizarraraz offered the service twice a week, telling Gabriella to pay whatever she could afford. “Generosity comes from places you would least expect,” Gabriella said.

(Dania Maxwell / Los Angeles Times)

“I’m having a really hard time just waiting around,” she told her. “Can I set a date?”

All the paperwork had gone through; she could set any day now.

“Any date?”

“Any.”

“July 16.”

Until then, she felt as if she was traveling on standby — now, she said, she knew what time she needed to board.

“Just like any other trip I’ve taken.”

A few mornings later, her hairdresser-turned-friend Rebecca Rincon visited with two bottles of prosecco.

“Hey, babe,” Gabriella greeted her.

Rincon wondered aloud if Gabriella believed in an afterlife. She’d gone back and forth through the years, Gabriella said, but now she didn’t think she did.

“I really feel that once I fall asleep, it’s lights out.”

Rincon thanked her for speaking so freely about death — an example she’d tried to follow recently when broaching the topic with her own parents.

Gabriella’s friend Rebecca Rincon, left, consoles her while talking about the day she went in for a mammogram and came out diagnosed with an aggressive breast cancer. Teasing Gabriella about the afterlife, Rincon asked Gabriella to “show up to me in the form of a free drink from a stranger at a bar.”

(Dania Maxwell / Los Angeles Times)

“You’re gonna be a teacher beyond this realm.”

“I hope so,” Gabriella said. “I have no idea what’s on the other side.”

Just don’t pull at my feet while I sleep, Rincon teased her.

Another friend had recently asked her not to tickle him at night, Gabriella said, and someone else told her they hoped she would show up to them as a dragonfly landing on their nose.

If I ever get a free drink from a stranger at a bar, Rincon told her, I’ll know it’s you. Gabriella’s eyes twinkled.

“Te quiero mucho,” Rincon told her. I love you.

“Y yo a ti.” I love you too.

Small moments like these always felt to Gabriella like a living funeral, an opportunity to listen in on the things loved ones might normally save for a eulogy.

“It’s been a gift to be able to die in this way.”

Many nights, she reread a text message she got from a high school friend, Collette Hillier, telling her that she’d long felt closer to her than most anyone in her life — even her husbands. She’d always admired her courage, but never more than now.

“There will never be another you,” the message said.

Gabriella wept every time she read it.

On days when she had the energy, she sorted her possessions into piles — her old matchbook collection for her granddaughter and a silver pendant from Easter Island for Hillier. She prepared a box for Brandon, filling it with his old high school essays and a bracelet a friend gave her from Indonesia.

 

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“I’ll need to hear your voice. Your laugh.”

— Collette Hillier

On the first day of her final month, Gabriella stayed in bed past noon.

Her arms throbbed so much at night that she sometimes dreamed of cutting them off. Menzie knocked, walking in with buttered toast, scrambled eggs and strawberries.

“Thank you, babe.”

Gabriella picked at the plate, mentally preparing for a goodbye video call with her longtime therapist.

Gabriella has one last session with the therapist she has seen off and on for more than a decade. “I just feel like time is moving really slowly,” she told her therapist.

(Dania Maxwell / Los Angeles Times)

Time was moving so slowly, she told her therapist, and she was eager for July 16. She cried as she explained that friends were planning to fly in ahead of that day.

“I’m not surprised at all,” her therapist said tenderly.

“Know I love you and know I thank you so much,” Gabriella told her.

“I love you too,” her therapist said.

Gabriella blew her a kiss and hung up.

A few days later, Hillier visited from San Luis Obispo. They drove to Ventura and sat on a bench overlooking the Pacific.

Gabriella had been coming to this exact spot since the ’70s — once to decompress for a week in her 20s, countless times to push her mother in a wheelchair up and down the promenade and, again, a few weeks earlier for a final visit with Brandon.

Her friendship with Hillier had ebbed and flowed through the years, through busy patches, but whenever Hillier was in trouble, she always leaned on Gabriella.

“My guardian angel,” she whispered, pulling her tightly to her chest.

They sat silently for a moment, staring out at the ocean that they both respected so deeply. Their feet dangled and spun in small circles like they were young girls again. Beach girls, just as they’d always been.

A random thought popped into Hillier’s mind — the type of small, silly thing she loved to bounce off Gabriella — and when she shared it Gabriella laughed so hard her entire body shook. That laugh.

There will never be another you

Hillier had started to keep all her voicemails.

“I’ll need to hear your voice. Your laugh.”

On her drive to Santa Paula on July 16, Hillier hit more traffic than she’d expected. She knew Gabriella planned to ingest the medication around noon and started to worry she might not make it in time to say goodbye. Then a dragonfly landed on her windshield, calming her nerves.

In Santa Paula, she turned down Main Street and passed a hair salon before walking to Gabriella’s studio, which was tucked behind a gate. Friends and family had gathered beneath a pergola. When Hillier walked into the studio, Gabriella handed her a small square photo they’d taken together at Santa Monica Pier when they were 19.

Between her final goodbyes, Gabriella held her phone, trying to figure out how to delete her email account and deactivate her Instagram. She’d meant to do it sooner, but never quite felt up to it. She spent some alone time with her daughter and snuggled in bed with her niece and granddaughter.

Gabriella’s friendship with Hillier had ebbed and flowed through the years, through busy patches, but whenever Hillier was in trouble, she always leaned on Gabriella.

(Dania Maxwell / Los Angeles Times)

Barsegyan asked if she was feeling any anxiety. About a 5 out of 10, she said, so he gave her something to calm her nerves. When he walked up several minutes later holding a small, red vial, he reminded her — as he had many times before — that she didn’t have to drink the medication, but that if she did it would end her life.

She nodded.

Schock fed her three spoonfuls of mango sorbet, which Gabriella had picked out several weeks earlier, knowing it would soothe her throat from the stinging medication. Barsegyan handed her the vial, and without hesitation, she put it to her lips, swigging it down in three confident pulls. She looked up at the ceiling, smiling softly.

 

 

Gabriella takes a fatal dose of medications prescribed through California’s death-with-dignity law with her death doula, Jill Schock, right, feeding her spoonfuls of mango sorbet between sips.

(Dania Maxwell / Los Angeles Times)

Gabriella rests on her bed next to Schock on July 16. When Gabriella was diagnosed with terminal cancer she did not consider life-extending treatments but rather the quality of the time she had left.

(Dania Maxwell / Los Angeles Times)

She died at 1:38 p.m. She was 64.

A day earlier, she’d been burrowed into a seat at the movie theater with Menzie and another dear friend since high school, Melanda Woo, on her left and a friend who’d flown in from Spain on her right.

She’d recently listened to “Where the Crawdads Sing” on audiobook, so when she heard the film adaptation would be released on July 15, she knew she wanted to see it.

As the lights dimmed, Gabriella tucked one hand in the other, twiddling her thumbs. She stared up at the previews, all with release dates well after she’d be gone. The lights dropped one final increment and a blue heron soared over a shoreline. As the camera panned through a lush marshland, a voiceover played.

A swamp knows all about death, and doesn’t necessarily define it as tragedy.

Gabriella watched intently as the story of a young woman’s loves and losses unfolded on the screen. The film ends with an aerial shot of the protagonist dead in a boat floating in the marsh that she loved so deeply. Then it cuts to a wide shot of small blinking lights and the voiceover returns.

Gabriella smiles as the closing credits of “Where the Crawdads Sing” play at a movie theater where she was joined by her dear friends, Fina Martínez Tortosa, Melanda Woo and Kathy Menzie, left to right, on her last full day of life.

(Dania Maxwell / Los Angeles Times)

I am the marsh now. I am a firefly. That’s where you’ll always find me, way back yonder, where the crawdads sing.

As the credits rolled, Gabriella put her pointer fingers into the corners of her eyes and wiped away two small tears. As the other movie watchers filtered out, her friends’ cries began to crescendo. When the music finally cut out, the sound of their heaves filled the theater.

Gabriella sat misty-eyed, but silent, tight in their embrace.

 

 

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If you view the utube video link at the end of this, what you will discover that this particular pain pt is dealing with a very rare painful disease. In the entire USA there could be upwards of 700 total pts dealing with these disease.  According to the video the only potential management for pts dealing with this disease – currently there is no cure for pts dealing with this disease – is LOW IMPACT EXERCISE/ACTIVITY. So if one of these pts have their pain management meds dramatically reduced… Typically they lose the ability to do  LOW IMPACT EXERCISE/ACTIVITY.  In this particular pain pt, they become – to use the pt’s own words – I am totally bedridden and need help to regain my quality of life.

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Arthritis Patients Are Being Denied Methotrexate Post-Dobbs. Are People With Cancer Next?

https://www.forbes.com/sites/victoriaforster/2022/07/18/arthritis-patients-are-being-denied-methotrexate-post-roe-are-people-with-cancer-next/

After the U.S. Supreme court overruled Roe v Wade last month, ripples have been felt throughout U.S. healthcare, with doctors claiming that the new restrictions threaten lives.

As part of this, in States where abortion is banned or now more severely restricted, multiple people with arthritis and other rheumatoid conditions have reported that they can no longer get their prescriptions filled, forcing them to try to find other medications to help manage their conditions.

Most of the people reporting they have been denied refills of their medication are women and there are suggestions that this is violating federal anti-sex discrimination laws. On the 14th of July, the Department for Health and Human Services said it was investigating the reports and communicating with pharmacies to remind them of their duties.

“We are committed to ensuring that everyone can access health care, free of discrimination. This includes access to prescription medications for reproductive health and other types of care,” said Xavier Becerra, Health and Human Services Secretary said on the 14th in a statement.

Methotrexate can be used to terminate pregnancies and is the most common drug used to treat ectopic pregnancy, where the fetus develops outside of the womb and is non-viable, as well as life-threatening for the pregnant individual. But methotrexate can also be used in therapy for certain types of cancer, working by reducing the amount of a nutrient called folate a cell can use, preventing it from growing and replicating itself.

“Methotrexate is an essential drug for oncologists,” said Julie R. Gralow, MD, FACP, FASCO, Chief Medical Officer of the American Society of Clinical Oncology (ASCO). “It is an essential chemotherapy agent for the treatment of multiple cancers including both adult and pediatric acute lymphoblastic leukemia and osteosarcoma,” Gralow added.

Methotrexate is also used to treat certain types of lymphoma, cancers which have spread from elsewhere to form tumors on the meninges-thin layers of tissue which cover the brain and occasionally breast and head and neck cancers. But so far, at least, prescribing issues affecting patients with arthritis do not appear to be affecting patients with cancer who need treatment with methotrexate.

“We have certainly heard concerns about this possibility, but we have not yet heard of a case where a patient with cancer has been denied methotrexate. We are communicating regularly with our members so that we have the most current information about the realities of delivering cancer care,” said Gralow.

However, it is not only methotrexate which may get caught up with the new anti-abortion laws in several states. Many cancer treatments are not compatible with pregnancy and on difficult occasions where a pregnant individual is diagnosed with cancer, one choice is to elect to have an abortion to allow treatment to proceed.

“ASCO’s singular focus is assuring every individual with cancer is able to receive high quality, equitable, evidence-based cancer care. For pregnant patients with cancer, the option to terminate a pregnancy is an important component of high-quality cancer care. We will continue to do everything within our means to ensure patients have access to equitable, evidence-based cancer care,” said Gralow.

The Supreme Court decision is still very recent and many of the ripple effects of the ruling have yet to be felt. Gralow says that ASCO is regularly reaching out to their volunteers and state societies to better understand what is happening on the ground in states where abortion is now banned or strictly limited.

“Patients must be able to trust their doctors. We are concerned that the Dobbs ruling creates uncertainty and confusion that can undermine this trust and the doctor-patient relationship, threatening patient access to potentially lifesaving, life-extending, or palliative treatment,” said Gralow.

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when I first started working in a pharmacy – the summer of 1967 – there was no DEA, there were no PBM’s.  Nearly all the Rx meds were brand name and everyone pay CASH for their prescriptions. The average Rx price was in the $4.00 range. Of course, the Brand Name Pharmas did all the R&D on new meds – as they do today.  Generic companies do little/no R&D for new medications. If one took the average Rx price back in 1967 and apply the Consumer Price Index and/or Cost of Living Adjustment to that price.  All things remaining the same, the average Rx price today should be in the $30 range – instead of pushing $70 as they are today, with 85%-90% of all Rxs being generics.

If somebody has taken the time, I have not seen it published.  The two biggest changes in prescription market between 1967 and today is that today the PBM industry controls abt 90% of the pricing of all prescriptions and – to a certain degree – what medications the pt gets their insurance to pay for and the 85%-90% of all Rxs dispensed is now generics.  I would suspect that one would find that the increase of the average Rx price would track the increase in the per-cent of all prescriptions that the PBM industry paid for over that time frame.

So, how does the part of the pharma industry in charge of footing the bill for all the R&D of new meds pay for all that expense when their meds are only 10%-15% of all prescriptions ?  Charge a ARM & a LEG for a brand name med, don’t forget the PBM’s will  demand up to 75% of the AWP (Average Wholesale Price) as a discount, rebate and/or kickback from the Pharma. The graphic below, demonstrates in what pockets  the $$ you pay for your Rx really goes.

One pt I saw posted the other day on FB, that they called customer service for goodrx and they answered OptumRx customer service – part of United Health insurance. Yep, it appears that the 4-5 major PBM’s are behind those CASH DISCOUNT Rx CARDS.

Critics say Mark Cuban’s pharmacy isn’t tackling the big issue: brand-name drugs

https://www.beckershospitalreview.com/pharmacy/critics-say-mark-cuban-s-pharmacy-isn-t-tackling-the-big-issue-brand-name-drugs.html

Mark Cuban’s pharmacy, Cost Plus Drug Co., has hundreds of drugs marked at discounted prices, but some pharmacy experts say there’s a larger problem that needs fixing, CNBC reported July 28. 

The online pharmacy launched in January with about 100 drugs, and by its one-year anniversary, plans to have more than 1,500 medications, according to the company’s website. The business model, which allocates for a $3 pharmacy dispensing fee, $5 shipping fee and a 15 percent profit margin with each order, aims to uproot the pharmaceutical industry, which has faced criticism for years about its opaque business practices. 

Gabriel Levitt, the president of PharmacyChecker, a company that monitors the cheapest drug prices, told CNBC there’s more to be done.

“As much as I support the venture, what they’re doing does not address the big elephant in the room,” Mr. Levitt said. “It’s really brand-name drugs that are increasing in price every year and forcing millions of Americans to cut back on medications or not take them at all.”

Brand-name drugs are 80 percent to 85 percent more expensive than generics since brand-name drugs have to repeat clinical tests to prove efficacy, according to the FDA. Cost Plus Drug Co. only offers generics. Mr. Cuban told CNBC he hopes to sell brand-name medications “within six months,” but added that it’s a tentative timeline.

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CVS siphoned millions from ‘safety net’ hospitals – New York lawsuit

https://www.reuters.com/business/healthcare-pharmaceuticals/new-york-attorney-general-sues-cvs-health-violating-antitrust-laws-2022-07-28/

NEW YORK, July 28 (Reuters) – New York on Thursday sued CVS Health Corp (CVS.N) for allegedly forcing hospitals that serve low-income patients to pay millions of dollars to access discounted prescription drugs, violating state antitrust law.

In a lawsuit filed in state court in Manhattan, New York Attorney General Letitia James said CVS group abused its market power by requiring hospitals and clinics to use a CVS subsidiary, Wellpartner, to fill prescriptions for discounted drugs at CVS pharmacies.

“While safety net health care providers are tackling public health crises and helping underserved communities, CVS is robbing them out of millions of desperately needed funds that could improve patient care,” James said in a statement.

“These allegations are without merit and we will defend ourselves vigorously,” CVS said in a statement.

The lawsuit centers on so-called safety net providers, which are eligible for discounted drugs because they serve predominantly lower-income patients under a federal program known as 340B.

Most providers contract with outside companies to administer their 340B programs, which requires extensive recordkeeping to comply with federal rules. CVS bought Wellpartner, a third-party 340B administrator, in 2017.

James’ lawsuit said that CVS then began refusing to contract with providers that did not use Wellpartner to obtain 340B benefits. Because 340B rules forbid providers from steering patients away from particular pharmacies, the providers were forced either to start using Wellpartner, or to forego 340B discounts when patients chose to fill their prescriptions at CVS.

Many providers already had contracts with other 340B administrators, but most switched to Wellpartner for all their 340B prescriptions, even those not filled at CVS, because it was not economical to pay two contractors, the lawsuit said.

James is seeking a court order blocking CVS from requiring providers to use Wellpartner, and an unspecified amount of money damages.

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This appears to be another bill/law that Congress plans on passing, when they don’t understand what they are really dealing with.  All out pt meds are provided by Part D and/or Medicare-C (advantage).  Which are all FOR PROFIT INSURANCE COMPANIES.  The Feds pay these companies a fixed $$/pt/month and the insurance company has got to figure out — how to spend less than they are paid for my the feds to provide medications to Medicare folks.  The PBM industry already negotiates prices with the pharmas and as the graphic below demonstrates the Insurance/PBM industry keeps the “lion’s share” of those discounts to pad their bottom lines. The top 5 PBM’s are owned by insurance companies, if those PBM’s are forced to share those discount/rebates/kickbacks with pts, I expect that pts will see higher premiums, deductibles and co-pays.  Even perhaps they will be forced to use the PBM’s mail order facility are in the case of CVS Health – be forced to have their Rxs filled at one of their community/retail pharmacies or their mail order.  Other PBM may “make a deal” with one of the chain pharmacies where the pts can get their Rxs filled and get some coverage by Part D or Medicare-C..  This article mentions some undefined “certain prescription drugs” that they will be seeking LOWER PRICES ON.

What tax hikes are in the Manchin-Schumer reconciliation bill?

https://www.foxbusiness.com/politics/what-tax-hikes-are-manchin-schumer-reconciliation-bill

Prescription drug pricing reforms: $288 billion

Under the bill, the government would have the power to negotiate with drugmakers in order to lower prices for certain prescription drugs. The proposal would cap what seniors on Medicare pay out of pocket for drugs each year at $2,000.

If pharmaceutical companies raise the prices of their drugs more than the rate of inflation, pharmaceutical companies would be required to rebate Medicare.

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Fentanyl From the Government? A Vancouver Experiment Aims to Stop Overdoses

https://www.nytimes.com/2022/07/26/health/fentanyl-vancouver-drugs.html

Biden’s Drug Czar Is Leading the Charge for a ‘Harm Reduction’ Approach

Experts describe the president’s drug control strategy as the most progressive since Richard Nixon appointed the nation’s first drug czar in 1971.

July 26, 2022

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