The New MADD Movement: Parents Rise Up Against Drug Deaths

People who have lost children to pills laced with fentanyl are demanding that lawmakers adopt stricter penalties and are pressuring Silicon Valley for social media protections. The movement harks back to the 1980s, when Mothers Against Drunk Driving activated a generation of parents.

Life as he knew it ended for Matt Capelouto two days before Christmas in 2019, when he found his 20-year-old daughter, Alexandra, dead in her childhood bedroom in Temecula, California. Rage overtook grief when authorities ruled her death an accident.

The college sophomore, home for the holidays, had taken half a pill she bought from a dealer on Snapchat. It turned out to be fentanyl, the powerful synthetic opioid that helped drive drug overdose deaths in the U.S. to more than 100,000 last year. “She was poisoned, and nothing was going to happen to the person who did it,” he said. “I couldn’t stand for that.”

The self-described political moderate said the experience made him cynical about California’s reluctance to impose harsh sentences for drug offenses.

So Capelouto, the suburban dad who once devoted all his time to running his print shop and raising his four daughters, launched a group called Drug Induced Homicide and traveled from his home to Sacramento in April to lobby for legislation known as “Alexandra’s Law.” The bill would have made it easier for California prosecutors to convict the sellers of lethal drugs on homicide charges.

Capelouto’s organization is part of a nationwide movement of parents-turned-activists fighting the increasingly deadly drug crisis — and they are challenging California’s doctrine that drugs should be treated as a health problem rather than prosecuted by the criminal justice system. Modeled after Mothers Against Drunk Driving, which sparked a movement in the 1980s, organizations such as Victims of Illicit Drugs and the Alexander Neville Foundation seek to raise public awareness and influence drug policy. One group, Mothers Against Drug Deaths, pays homage to MADD by borrowing its acronym.

The groups press state lawmakers for stricter penalties for dealers and lobby technology companies to allow parents to monitor their kids’ communications on social media. They erect billboards blaming politicians for the drug crisis and stage “die-in” protests against open-air drug markets in Los Angeles’ Venice Beach and San Francisco’s Tenderloin neighborhood.

“This problem is going to be solved by the grassroots efforts of affected families,” said Ed Ternan, who runs the Pasadena-based group Song for Charlie, which focuses on educating youths about the dangers of counterfeit pills.

Many parents mobilized after a wave of deaths that began in 2019. Often, they involved high school or college students who thought they were taking OxyContin or Xanax purchased on social media but were actually ingesting pills containing fentanyl. The drug first hit the East Coast nearly a decade ago, largely through the heroin supply, but Mexican drug cartels have since introduced counterfeit pharmaceuticals laced with the highly addictive powder into California and Arizona to hook new customers.

In many cases, the overdose victims are straight-A students or star athletes from the suburbs, giving rise to an army of educated, engaged parents who are challenging the silence and stigma surrounding drug deaths.

Ternan knew almost nothing about fentanyl when his 22-year-old son, Charlie, died in his fraternity house bedroom at Santa Clara University a few weeks before he was scheduled to graduate in spring 2020. Relatives determined from messages on Charlie’s phone that he had intended to buy Percocet, a prescription painkiller he had taken after back surgery two years earlier. First responders said the strapping 6-foot-2-inch, 235-pound college senior died within a half-hour of swallowing the counterfeit pill.

Ternan discovered a string of similar deaths in other Silicon Valley communities. In 2021, 106 people died from fentanyl overdoses in Santa Clara County — up from 11 in 2018. The deaths have included a Stanford University sophomore and a 12-year-old girl in San Jose.

With the help of two executives at Google who lost sons to pills laced with fentanyl, Ternan persuaded Facebook, Instagram, TikTok, YouTube, and other social media platforms to donate ad space to warnings about counterfeit drugs. Pressure from parent groups has also spurred Santa Monica-based Snapchat to deploy tools to detect drug sales and restrictions designed to make it harder for dealers to target minors.

Since the earliest days of the opioid epidemic, the families of people dealing with addiction and of those who have died from overdoses have supported one another in church basements and on online platforms from Florida to Oregon. Now, the family-run organizations that have sprung from California’s fentanyl crisis have begun cooperating with one another.

A network of parent groups and other activists that calls itself the California Peace Coalition was formed recently by Michael Shellenberger, a Berkeley author and activist running for governor as an independent.

One critic of California’s progressive policies is Jacqui Berlinn, a legal processing clerk in the East Bay who started Mothers Against Drug Deaths — a name she chose as an homage to the achievements of Mothers Against Drunk Driving founder Candace Lightner, a Fair Oaks housewife whose 13-year-old daughter was killed in 1980 by a driver under the influence.

Berlinn’s son, Corey, 30, has used heroin and fentanyl for seven years on the streets of San Francisco. “My son isn’t trash,” Berlinn said. “He deserves to get his life back.”

She believes the city’s decision not to charge dealers has allowed open-air narcotics markets to flourish in certain neighborhoods and have enabled drug use, rather than encouraged people dealing with addiction to get help.

In April, Berlinn’s group spent $25,000 to erect a billboard in the upscale retail district of Union Square. Over a glowing night shot of the Golden Gate Bridge, the sign says: “Famous the world over for our brains, beauty and, now, dirt-cheap fentanyl.”

This month, the group installed a sign along Interstate 80 heading into Sacramento that targets Democratic Gov. Gavin Newsom. Playing off signage used at parks, the billboard features a “Welcome to Camp Fentanyl” greeting against a shot of a homeless encampment. The group said a mobile billboard will also circle the state Capitol for an undisclosed period.

New Billboards from Mothers Against Drug Deaths on I-80 in Sacramento. @StopDrugDeaths pic.twitter.com/3UdXh9BUq5

— Mothers Against Drug Deaths (@JacquiBerlinn) May 12, 2022

Mothers Against Drug Deaths is calling for more options and funding for drug treatment and more arrests of dealers. The latter would mark a sharp turn from the gospel of “harm reduction,” a public health approach embraced by state and local officials that holds abstention as unrealistic. Instead, this strategy calls for helping people dealing with addiction stay safe through things like needle exchanges and naloxone, an overdose reversal drug that has saved thousands of lives.

The parent movement echoes recall efforts happening in two major cities. Progressive prosecutors Chesa Boudin in San Francisco and George Gascón in Los Angeles have veered away from throwing street dealers in jail, which they call a pointless game of whack-a-mole that punishes poor minorities.

California lawmakers are wary of repeating the mistakes of the war-on-drugs era and have blocked a series of bills that would stiffen penalties for fentanyl sales. They say the legislation would accomplish little apart from packing the state’s jails and prisons.

“We can throw people in jail for a thousand years, and it won’t keep people from doing drugs, and it won’t keep them from dying,” said state Sen. Scott Wiener (D-San Francisco). “We know that from experience.”

Some parents agree. After watching her son cycle in and out of the criminal justice system on minor drug charges in the 1990s, Gretchen Burns Bergman became convinced that charging people with minor drug offenses, such as possession, is counterproductive.

In 1999, the San Diego fashion show producer started A New Path, which has advocated for marijuana legalization and an end to California’s “three strikes” law. A decade later, she formed Moms United to End the War on Drugs, a nationwide coalition. Today, both her sons have recovered from heroin addiction with the help of “compassionate support” and work as drug counselors, she said.

“I’ve been at this long enough to see the pendulum swing,” Burns Bergman said of the public’s shifting views on law enforcement.

In December, Brandon McDowell, 22, of Riverside, was arrested and accused of selling the tablet that killed Matt Capelouto’s daughter. McDowell was charged with distributing fentanyl resulting in death, which carries a mandatory minimum sentence of 20 years in federal prison.

Although Alexandra’s Law failed to make it out of committee, Capelouto pointed out that years of lobbying went into the passage of stricter drunken driving laws. He vowed not to give up on the bill named for his daughter, who wrote poetry and loved David Bowie.

“I’m going to be back in front of them,” he said, “every year.”

This story was produced by KHN, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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Can a Monthly Injection Be the Key to Curbing Addiction? These Experts Say Yes

In California, where overdose deaths are on the rise, physicians say administering anti-addiction medication as a monthly injection holds tremendous potential. So, why aren’t more patients getting it?

OAKLAND, Calif. — Dr. Andrew Herring has a clear goal walking into every appointment with patients seeking medication to treat an opioid use disorder: persuade them to get an injection of extended-release buprenorphine.

At his addiction clinic at Highland Hospital, a bustling public facility in the heart of Oakland, Herring promotes administering a shot of buprenorphine in the belly to provide a month of addiction treatment rather than prescribing oral versions that must be taken daily. For him, the shots’ longer-acting protection is a “game changer” and may be his only chance to help a vulnerable patient at risk of overdose.

“At any point in time, they’re just a balloon that’s going to go,” Herring said. “You might only have this one interaction. And the question is, how powerful can you make it?”

In California, where overdose deaths have been rising for years, addiction experts say administering a month’s worth of anti-addiction medication holds great potential, particularly for people without housing or who struggle with other forms of instability. Yet despite its promise, the use of injectable buprenorphine remains fairly limited, especially compared with other forms of addiction medication. Researchers have yet to publish studies comparing different ways to administer buprenorphine.

Buprenorphine, one of three medications approved in the U.S. to treat opioid use disorder, works by binding to opioid receptors in the brain and reducing cravings and withdrawal symptoms. And because it occupies those receptor sites, buprenorphine keeps other opioids from binding and ensures that if a patient takes a high dose of a drug like heroin or fentanyl, they are less likely to overdose. Patients often stay on buprenorphine for years.

If Herring prescribes a supply of buprenorphine as a tablet or film that is placed under the tongue, the patient must commit to taking the medication at least once a day, and many fall out of treatment. He said this is especially true for his patients experiencing homelessness and those who also use methamphetamine.

“It’s like a religious thing — you have to wake up every morning and repeat your vows,” said Herring. “In reality, there are a lot of people who deserve treatment who can’t meet that requirement.”

Oral forms of buprenorphine have been available to treat addiction since 2002 and can be purchased as a generic for less than $100 a month. Injectable buprenorphine, sold under the brand name Sublocade, received FDA approval in 2017. It has a hefty list price of $1,829.05 for a monthly injection. The drugmaker Indivior reported $244 million in revenue from Sublocade last year alone, with a company goal to eventually make $1 billion in annual sales. No generic or competing version of the drug is available.

Most patients won’t pay full price, Indivior says, because most health plans cover the drug. Physicians, however, say the high cost can be a barrier for patients with private health plans, which sometimes resist covering the medication. Medi-Cal, California’s health insurance program for low-income people, covers Sublocade without prior authorization, making the treatment accessible to the majority of Herring’s patients.

Still, addiction experts say, Sublocade use remains limited because of the regulatory hurdles required to dispense it.

Providers must register with the U.S. Drug Enforcement Administration and obtain a waiver to prescribe buprenorphine because it’s considered a controlled substance. In addition, clinics must complete an FDA safety certification program to dispense the medication. And Sublocade can be ordered only by a specialty pharmacy, which must also pass the FDA program.

“At many hospitals, that will mean either a delay in getting this medication on our shelves or just opting out,” said Dr. Rais Vohra, regional director for the California Bridge Network, a state-funded program that supports hospitals in offering treatment for substance use disorders, including Herring’s clinic.

Vohra said Community Regional Medical Center in Fresno, where he works as an emergency physician, is still looking through the documentation requirements to see if the hospital’s pharmacy can distribute the medication — which would make it one of the few Central Valley providers to do so.

Oral buprenorphine, by contrast, is a simple prescription that most local drugstores keep in stock.

“All the hoops that clinicians and patients have to jump through to get this medication is crazy. We don’t do that for any other disease,” said Dr. Hannah Snyder, who runs the addiction clinic at Zuckerberg San Francisco General Hospital across the bay.

Several clinicians noted that access remains a problem even with oral forms of buprenorphine. Despite a cascade of studies proving the effectiveness of medication-assisted treatment, many patients across the country struggle to find a provider willing to prescribe buprenorphine in any form — especially in communities of color.

“The most important question isn’t whether long-acting injectable bupe is a better solution than sublingual buprenorphine for opioid use disorder,” said Dr. Michael Ostacher, a professor at Stanford University School of Medicine, who is comparing injectable and oral versions of buprenorphine through Veterans Affairs. “The bigger question is how we increase access to treatment for all people who need [the medication].”

Angela Griffiths is among the patients who say Sublocade has changed their lives. Griffiths, 41, of San Francisco, used heroin for 18 years. When she was pregnant with her daughter in 2016, doctors put her on methadone, which made her feel “miserable.” Three years ago, she said, she switched to buprenorphine films, but carrying the strips with her everywhere still made her feel tied to her addiction.

“The ritual of taking something every day plays something in your mind,” Griffiths said.

When doctors at the SF General clinic switched her to monthly Sublocade injections, she described the change as “extraordinary.”

“I’m not reaching for my drawer anymore for a fix,” she said. “I have the freedom to wake up and start my day however I want, whether it’s to go to the patio and drink a cup of coffee or to snuggle with my daughter in bed a little longer. It’s there; I don’t have to take anything.”

In states where Medicaid plans may still require prior authorization, waits for Sublocade can stretch into months. Across the border at the Northern Nevada Hopes clinic in Reno, Nevada, for example, Dr. Taylor Tomlinson said she tells patients that between battles for coverage and pharmacy delays, they might have to wait two months for an injection.

“I’m always going to offer it to a patient who I think would be a good candidate, but in the time they have to wait, they get interested in other things,” said Tomlinson. “It creates a barrier to care.”

California’s Medicaid program does not require prior authorization but providing Sublocade is still a challenge. At the Placerville clinic supported by the California Bridge Network, Dr. Juliet La Mers, the director, said a quarter of her buprenorphine patients get injections. Still, they often wait two weeks before Sublocade arrives from the specialty pharmacy.

Herring has been able to cut through some of that red tape at his Oakland clinic by working with the Highland pharmacy to stock and distribute Sublocade. As soon as a patient agrees to an injection, Herring simply calls the pharmacy down the hall and administers it on the spot.

Herring sees urgency — and opportunity — to increase the use of injectable buprenorphine as fentanyl use rises across California. For years, the deadly synthetic opioid was concentrated mostly on the East Coast; in 2018, 88% of deaths from synthetic opioids occurred in the 28 states east of the Mississippi River. But more recently, fentanyl has begun to infiltrate Western states. From 2018 to 2020, deaths from fentanyl overdoses in California quintupled, according to state data.

“No one understands what they’re dealing with,” Herring said of fentanyl’s potency. “This is the time where our greatest deaths are going to occur.”

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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Money Flows Into Addiction Tech, But Will It Curb Soaring Opioid Overdose Deaths?

Experts are concerned that flashy Silicon Valley technology won’t reach those most in need of treatment for substance use disorders.

David Sarabia had already sold two startups by age 26 and was sitting on enough money to never have to work another day in his life. He moved from Southern California to New York City and began to indulge in all the luxuries his newly minted millionaire status conveyed. Then it all went sideways, and his life quickly unraveled.

“I became a massive cocaine addict,” Sarabia said. “It started off just casual partying, but that escalated to pretty much anything I could get my hands on.”

At one particularly low point, Sarabia was homeless for three months, sleeping on public transportation to stay warm. Even with plenty of money in the bank, Sarabia said, he’d lost the will to live. “I’d given up,” he said.

He got back on his feet, sort of, and for the next three years lived as a “functional cocaine addict” until his best friend, Jay Greenwald, died after a night of partying. Finally, Sarabia checked himself into a rehab in Southern California — ostensibly a luxurious one, although Sarabia didn’t find it to be so.

Still, the place saved his life. The clinicians really cared, he recalled, although their efforts were hampered by clunky technology and poor management. He had the feeling that the owners were more interested in profits than in helping people recover.

Just days off cocaine, the tech entrepreneur was scribbling designs for his next startup idea: a digital platform that would make clinician paperwork easier, combined with a mobile app to guide patients through recovery. After he left treatment in 2017, Sarabia tapped his remaining wealth — about $400,000 — to fund an addiction tech company he named inRecovery.

With the nation’s opioid overdose epidemic hitting a record high of more than 100,000 deaths in 2021, effective ways to fight addiction and expand treatment access are desperately needed. Sarabia and other entrepreneurs in the realm they call addiction tech see a $42 billion U.S. market for their products and an addiction treatment field that is, in techspeak, ripe for disruption.

It has long been torn by opposing ideologies and approaches: medication-assisted treatment versus cold-turkey detox; residential treatment versus outpatient; abstinence versus harm reduction; peer support versus professional help. And most people who report struggling with substance use never manage to access treatment at all.

Tech is already offering help to some. Those who can pay out-of-pocket, or have treatment covered by an employer or insurer, can access one of a dozen addiction telemedicine startups that allow them to consult with a physician and have a medication like buprenorphine mailed directly to their home. Some of the virtual rehabs provide digital cognitive behavior treatment, with connected devices and even mail-in urine tests to monitor compliance with sobriety.

Plentiful apps offer peer support and coaching, and entrepreneurs are developing software for treatment centers that handle patient records, personalize the client’s time in rehab, and connect them to a network of peers.

But while the founders of for-profit companies may want to end suffering, said Fred Muench, clinical psychologist and president of the nonprofit Partnership to End Addiction, it all comes down to revenue.

Startup experts and clinicians working on the front lines of the drug and overdose epidemic doubt the flashy Silicon Valley technology will ever reach people in the throes of addiction who are unstably housed, financially challenged, and on the wrong side of the digital divide.

“The people who are really struggling, who really need access to substance use treatment, don’t have 5G and a smartphone,” said Dr. Aimee Moulin, a professor and behavioral health director for the Emergency Medicine Department at UC Davis Health. “I just worry that as we start to rely on these tech-heavy therapy options, we’re just creating a structure where we really leave behind the people who actually need the most help.”

The investors willing to feed millions of dollars on startups generally aren’t investing in efforts to expand treatment to the less privileged, Moulin said.

Besides, making money in the addiction tech business is tough, because addiction is a stubborn beast.

Conducting clinical trials to validate digital treatments is challenging because of users’ frequent lapses in medication adherence and follow-up, said Richard Hanbury, founder and CEO of Sana Health, a startup that uses audiovisual stimulation to relax the mind as an alternative to opioids.

There are thousands of private, nonprofit, and government-run programs and drug rehabilitation centers across the country. With so many bit players and disparate programs, startups face an uphill battle to land enough customers to generate significant revenue, he added.

After conducting a small study to ease anxiety for people detoxing off opioids, Hanbury postponed the next step, a larger study. To sell his product to the country’s sprawling array of addiction treatment providers, Hanbury decided, he would need to hire a much larger sales team than his budding company could afford.

Still, the immense need is feeding enthusiasm for addiction tech.

In San Francisco alone, more than twice as many people died from drug overdoses as from covid over the past two years. Employers, insurers, providers, families, and those suffering addiction themselves are all demanding better and affordable access to treatment, said Unity Stoakes, president and managing partner of StartUp Health.

The investment firm has launched a portfolio of seed-stage startups that aim to use technology to end addiction and the opioid epidemic. Stoakes hopes the wave of new treatment options will reduce the stigma of addiction and increase awareness and education. The emerging tools aren’t trying to remove human care for addiction, but rather “supercharge the doctor or the clinician,” he said.

While acknowledging that underserved populations are hard to reach, Stoakes said tech can expand access and enhance targeted efforts to help them. With enough startups experimenting with different types of treatment and delivery methods, hopefully one or more will succeed, he said.

Addiction telehealth startups have gained the most traction. Quit Genius, a virtual addiction treatment provider for alcohol, opioid, and nicotine dependence, raised $64 million from investors last summer, and in October, $118 million went to Workit Health, a virtual prescriber of medication-assisted treatment. Several other startups — Boulder Care, Groups Recover Together, Ophelia, Bicycle Health, and Wayspring, most of which have nearly identical telehealth and prescribing models — have landed sizable funding since the pandemic started.

Some of the startups already sell to self-insured employers, providers, and payers. Some market directly to consumers, while others are conducting clinical trials to get FDA approval they hope to parlay into steadier reimbursement. But that route involves a lot of competition, regulatory hurdles, and the need to convince payers that adding another treatment will drive down costs.

Sarabia’s inRecovery plans to use its software to help treatment centers run more efficiently and improve their patient outcomes. The startup is piloting an aftercare program, aimed at keeping patients connected to prevent relapse after treatment, with Caron Treatment Centers, a high-end nonprofit treatment provider based in Pennsylvania.

His long-term goal is to drive down costs enough to offer his service to county-run treatment centers in hopes of expanding care to the neediest. But for now, implementing the tech doesn’t come cheap, with treatment providers paying anywhere from $50,000 to $100,000 a year to license the software.

“Bottom line, for the treatment centers that don’t have consistent revenue, those on the lower end, they will probably not be able to afford something like this,” he said.

This story was produced by KHN, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

USE OUR CONTENT

This story can be republished for free (details).

Money Flows Into Addiction Tech, But Will It Curb Soaring Opioid Overdose Deaths?

Experts are concerned that flashy Silicon Valley technology won’t reach those most in need of treatment for substance use disorders.

David Sarabia had already sold two startups by age 26 and was sitting on enough money to never have to work another day in his life. He moved from Southern California to New York City and began to indulge in all the luxuries his newly minted millionaire status conveyed. Then it all went sideways, and his life quickly unraveled.

“I became a massive cocaine addict,” Sarabia said. “It started off just casual partying, but that escalated to pretty much anything I could get my hands on.”

At one particularly low point, Sarabia was homeless for three months, sleeping on public transportation to stay warm. Even with plenty of money in the bank, Sarabia said, he’d lost the will to live. “I’d given up,” he said.

He got back on his feet, sort of, and for the next three years lived as a “functional cocaine addict” until his best friend, Jay Greenwald, died after a night of partying. Finally, Sarabia checked himself into a rehab in Southern California — ostensibly a luxurious one, although Sarabia didn’t find it to be so.

Still, the place saved his life. The clinicians really cared, he recalled, although their efforts were hampered by clunky technology and poor management. He had the feeling that the owners were more interested in profits than in helping people recover.

Just days off cocaine, the tech entrepreneur was scribbling designs for his next startup idea: a digital platform that would make clinician paperwork easier, combined with a mobile app to guide patients through recovery. After he left treatment in 2017, Sarabia tapped his remaining wealth — about $400,000 — to fund an addiction tech company he named inRecovery.

With the nation’s opioid overdose epidemic hitting a record high of more than 100,000 deaths in 2021, effective ways to fight addiction and expand treatment access are desperately needed. Sarabia and other entrepreneurs in the realm they call addiction tech see a $42 billion U.S. market for their products and an addiction treatment field that is, in techspeak, ripe for disruption.

It has long been torn by opposing ideologies and approaches: medication-assisted treatment versus cold-turkey detox; residential treatment versus outpatient; abstinence versus harm reduction; peer support versus professional help. And most people who report struggling with substance use never manage to access treatment at all.

Tech is already offering help to some. Those who can pay out-of-pocket, or have treatment covered by an employer or insurer, can access one of a dozen addiction telemedicine startups that allow them to consult with a physician and have a medication like buprenorphine mailed directly to their home. Some of the virtual rehabs provide digital cognitive behavior treatment, with connected devices and even mail-in urine tests to monitor compliance with sobriety.

Plentiful apps offer peer support and coaching, and entrepreneurs are developing software for treatment centers that handle patient records, personalize the client’s time in rehab, and connect them to a network of peers.

But while the founders of for-profit companies may want to end suffering, said Fred Muench, clinical psychologist and president of the nonprofit Partnership to End Addiction, it all comes down to revenue.

Startup experts and clinicians working on the front lines of the drug and overdose epidemic doubt the flashy Silicon Valley technology will ever reach people in the throes of addiction who are unstably housed, financially challenged, and on the wrong side of the digital divide.

“The people who are really struggling, who really need access to substance use treatment, don’t have 5G and a smartphone,” said Dr. Aimee Moulin, a professor and behavioral health director for the Emergency Medicine Department at UC Davis Health. “I just worry that as we start to rely on these tech-heavy therapy options, we’re just creating a structure where we really leave behind the people who actually need the most help.”

The investors willing to feed millions of dollars on startups generally aren’t investing in efforts to expand treatment to the less privileged, Moulin said.

Besides, making money in the addiction tech business is tough, because addiction is a stubborn beast.

Conducting clinical trials to validate digital treatments is challenging because of users’ frequent lapses in medication adherence and follow-up, said Richard Hanbury, founder and CEO of Sana Health, a startup that uses audiovisual stimulation to relax the mind as an alternative to opioids.

There are thousands of private, nonprofit, and government-run programs and drug rehabilitation centers across the country. With so many bit players and disparate programs, startups face an uphill battle to land enough customers to generate significant revenue, he added.

After conducting a small study to ease anxiety for people detoxing off opioids, Hanbury postponed the next step, a larger study. To sell his product to the country’s sprawling array of addiction treatment providers, Hanbury decided, he would need to hire a much larger sales team than his budding company could afford.

Still, the immense need is feeding enthusiasm for addiction tech.

In San Francisco alone, more than twice as many people died from drug overdoses as from covid over the past two years. Employers, insurers, providers, families, and those suffering addiction themselves are all demanding better and affordable access to treatment, said Unity Stoakes, president and managing partner of StartUp Health.

The investment firm has launched a portfolio of seed-stage startups that aim to use technology to end addiction and the opioid epidemic. Stoakes hopes the wave of new treatment options will reduce the stigma of addiction and increase awareness and education. The emerging tools aren’t trying to remove human care for addiction, but rather “supercharge the doctor or the clinician,” he said.

While acknowledging that underserved populations are hard to reach, Stoakes said tech can expand access and enhance targeted efforts to help them. With enough startups experimenting with different types of treatment and delivery methods, hopefully one or more will succeed, he said.

Addiction telehealth startups have gained the most traction. Quit Genius, a virtual addiction treatment provider for alcohol, opioid, and nicotine dependence, raised $64 million from investors last summer, and in October, $118 million went to Workit Health, a virtual prescriber of medication-assisted treatment. Several other startups — Boulder Care, Groups Recover Together, Ophelia, Bicycle Health, and Wayspring, most of which have nearly identical telehealth and prescribing models — have landed sizable funding since the pandemic started.

Some of the startups already sell to self-insured employers, providers, and payers. Some market directly to consumers, while others are conducting clinical trials to get FDA approval they hope to parlay into steadier reimbursement. But that route involves a lot of competition, regulatory hurdles, and the need to convince payers that adding another treatment will drive down costs.

Sarabia’s inRecovery plans to use its software to help treatment centers run more efficiently and improve their patient outcomes. The startup is piloting an aftercare program, aimed at keeping patients connected to prevent relapse after treatment, with Caron Treatment Centers, a high-end nonprofit treatment provider based in Pennsylvania.

His long-term goal is to drive down costs enough to offer his service to county-run treatment centers in hopes of expanding care to the neediest. But for now, implementing the tech doesn’t come cheap, with treatment providers paying anywhere from $50,000 to $100,000 a year to license the software.

“Bottom line, for the treatment centers that don’t have consistent revenue, those on the lower end, they will probably not be able to afford something like this,” he said.

This story was produced by KHN, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

USE OUR CONTENT

This story can be republished for free (details).

San Francisco Wrestles With Drug Approach as Death and Chaos Engulf Tenderloin

Covid-19, distrust of police and cheap narcotics have turned parts of the wealthy city into cesspools of filth and drug overdose. City officials and residents profoundly disagree on what needs to be done.

This story also ran on Los Angeles Times. It can be republished for free.

SAN FRANCISCO — In early 2019, Tom Wolf posted a thank-you on Twitter to the cop who had arrested him the previous spring, when he was homeless and strung out in a doorway with 103 tiny bindles of heroin and cocaine in a plastic baggie at his feet.

“You saved my life,” wrote Wolf, who had finally gotten clean after that bust and 90 days in jail, ending six months of sleeping on scraps of cardboard on the sidewalk.

Today, he joins a growing chorus of people, including the mayor, calling for the city to crack down on an increasingly deadly drug trade. But there is little agreement on how that should be done. Those who demand more arrests and stiffer penalties for dealers face powerful opposition in a city with little appetite for locking people up for drugs, especially as the Black Lives Matter and Defund the Police movements push to drastically limit the power of law enforcement to deal with social problems.

Drug overdoses killed 621 people in the first 11 months of 2020, up from 441 in all of 2019 and 259 in 2018. San Francisco is on track to lose an average of nearly two people a day to drugs in 2020, compared with the 178 who had died by Dec. 20 of the coronavirus.

As in other parts of the country, most of the overdoses have been linked to fentanyl, the powerful synthetic opioid that laid waste to the eastern United States starting in 2013 but didn’t arrive in the Bay Area until about five years later. Just as the city’s drug scene was awash with the lethal new product — which is 50 times stronger than heroin and sells on the street for around $20 for a baggie weighing less than half a gram — the coronavirus pandemic hit, absorbing the attention and resources of health officials and isolating drug users, making them more likely to overdose.

The pandemic is contributing to rising overdose deaths nationwide, according to the Centers for Disease Control and Prevention, which reported last month that a record 81,000 Americans died of an overdose in the 12 months ending in May.

“This is moving very quickly in a horrific direction, and the solutions aren’t matching it,” said Supervisor Matt Haney, who represents the Tenderloin and South of Market neighborhoods, where nearly 40% of the deaths have occurred. Haney, who has hammered City Hall for what he sees as its indifference to a life-or-death crisis, is calling for a more coordinated response.

“It should be a harm reduction response, it should be a treatment response — and yes, there needs to be a law enforcement aspect of it too,” he said.

Tensions within the city’s leadership came to a head in September, when Mayor London Breed supported an effort by City Attorney Dennis Herrera to clean up the Tenderloin by legally blocking 28 known drug dealers from entering the neighborhood.

But District Attorney Chesa Boudin, a progressive elected in 2019 on a platform of police accountability and racial justice, sided with activists opposing the move. He called it a “recycled, punishment-focused” approach that would accomplish nothing.

People have died on the Tenderloin’s needle-strewn sidewalks and alone in hotel rooms where they were housed by the city to protect them from covid-19. Older Black men living alone in residential hotels are dying at particularly high rates; Blacks make up around 5% of the city’s population but account for a quarter of the 2020 overdoses. Last February, a man was found hunched over, ice-cold, in the front pew at St. Boniface Roman Catholic Church.

The only reason drug deaths aren’t in the thousands, say health officials, is the outreach that has become the mainstay of the city’s drug policy. From January to October, 2,975 deaths were prevented by naloxone, an overdose reversal drug that’s usually sprayed up the nose, according to the DOPE Project, a city-funded program that trains outreach workers, drug users, the users’ family members and others.

“If we didn’t have Narcan,” said program manager Kristen Marshall, referring to the common naloxone brand name, “there would be no room at our morgue.”

The city is also hoping that this year state lawmakers will approve safe consumption sites, where people can do drugs in a supervised setting. Other initiatives, like a 24-hour meth sobering center and an overhaul of the city’s behavioral health system, have been put on hold because of pandemic-strained resources.

Efforts like the DOPE Project, the country’s largest distributor of naloxone, reflect a seismic shift over the past few years in the way cities confront drug abuse. As more people have come to see addiction as a disease rather than a crime, there is little appetite for locking up low-level dealers, let alone drug users — policies left over from the “war on drugs” that began in 1971 under President Richard Nixon and disproportionately punished Black Americans.

In practice, San Francisco police don’t arrest people for taking drugs, certainly not in the Tenderloin. On a sunny afternoon in early December, a red-haired young woman in a beret crouched on a Hyde Street sidewalk with her eyes closed, clutching a piece of foil and a straw. A few blocks away, a man sat on the curb injecting a needle into a thigh covered with scabs and scars, while two uniformed police officers sat in a squad car across the street.

Last spring, after the pandemic prompted a citywide shutdown, police stopped arresting dealers to avoid contacts that might spread the coronavirus. Within weeks, the sidewalks of the Tenderloin were lined with transients in tents. The streets became such a narcotics free-for-all that many of the working-class and immigrant families living there felt afraid to leave their homes, according to a federal lawsuit filed by business owners and residents. It accuses City Hall of treating less wealthy ZIP codes as “containment zones” for the city’s ills.

The suit was settled a few weeks later after officials moved most of the tents to designated “safe sleeping sites.” But for many, the deterioration of the Tenderloin, juxtaposed with the gleaming headquarters of companies like Twitter and Uber just blocks away, symbolizes San Francisco’s starkest contradictions.

Mayor Breed, who lost her younger sister to a drug overdose in 2006, has called for a crackdown on drug dealing.

The Federal Initiative for the Tenderloin was one such effort, announced in 2019. It aims to “reclaim a neighborhood that is being smothered by lawlessness,” U.S. Attorney David Anderson said at a recent virtual news conference held to announce a major operation in which the feds arrested seven people and seized 10 pounds of fentanyl.

Law enforcement agencies have blamed the continued availability of cheap, potent drugs on lax prosecutions. Boudin, however, said his office files charges in 80% of felony drug cases, but most involve low-level dealers whom cartels can easily replace in a matter of hours.

He pointed to a 2019 federal sting that culminated in the arrest of 32 dealers — mostly Hondurans who were later deported — after a two-year undercover operation involving 15 agencies.

“You go walk through the Tenderloin today and tell me if it made a difference,” said Boudin.

His position reflects a growing “progressive prosecutor” movement that questions whether decades-old policies that focus on putting people behind bars are effective or just. In May, the killing of George Floyd by the Minneapolis police energized a nationwide police reform campaign. Cities around the country, including San Francisco, have promised to redirect millions of dollars from law enforcement to social programs.

“If our city leadership says in one breath that they want to defund the police and are for racial and economic justice and in the next talk about arresting drug dealers, they’re hypocrites and they’re wrong,” said Marshall, the leader of the DOPE Project.

But Wolf, 50, believes a concerted crackdown on dealers would send a message to the drug networks that San Francisco is no longer an open-air illegal drug market.

Like hundreds of thousands of other Americans who’ve succumbed to opiate misuse, he began with a prescription for the painkiller oxycodone, in his case following foot surgery in 2015. When the pills ran out, he made his way from his tidy home in Daly City, just south of San Francisco, to the Tenderloin, where dealers in hoodies and backpacks loiter three or four deep on some blocks.

When he could no longer afford pills, Wolf switched to heroin, which he learned how to inject on YouTube. He soon lost his job as a caseworker for the city and his wife threw him out, so he became homeless, holding large quantities of drugs for Central American dealers, who sometimes showed him photos of the lavish houses they were having built for their families back home.

Looking back, he wishes it hadn’t taken six arrests and three months behind bars before someone finally pushed him toward treatment.

“In San Francisco, it seems like we’ve moved away from trying to urge people into treatment and instead are just trying to keep people alive,” he said. “And that’s not really working out that great.”

This story was produced by KHN, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

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California’s New Attack On Opioid Addiction Hits Old Roadblocks

State officials in California have achieved some success in promoting the use of medication-assisted treatment for people with opioid addictions, but they are bumping up against familiar resistance and constraints.

Jennifer Stilwell, a 30-year-old mother of two young children, kicked heroin cold turkey five years ago, but she got hooked again last fall.

Stilwell, an accountant in Placerville, California, tried to quit a second time, but she couldn’t tolerate the sickening withdrawal symptoms. She resisted going to the emergency room because “I thought they’d treat me like a drug addict and not a patient in pain,” she said.

Instead, she kept smoking heroin to keep the agony at bay. Then, in February, a county mental health worker told her about a new program that promised stigma-free treatment for her addiction.

She went to the ER at Marshall Medical Center in Placerville, where a doctor put her on buprenorphine, one of three drugs approved by the Food and Drug Administration for medication-assisted treatment (MAT) of people with opioid dependency.

Her ongoing treatment includes intensive counseling and social support, providing what is known in the recovery field as “whole person” therapy.

“It’s still early in my battle,” Stilwell said. “But my withdrawals are gone. Now I can concentrate on being a mother.”

Marshall is one of a growing number of health care institutions across California that offer medication-assisted treatment with funding and support from the state’s MAT Expansion Project, which started in 2018 and is financed by $265 million in federal grants.

Numerous studies have shown that relapse and overdose rates are lower among opioid users who get MAT than those who don’t. From 2016 to 2018, for example, the overdose death rate in Humboldt County — one of California’s highest ― dropped by about half, which officials attributed in large part to the MAT Expansion Project.

In February, California’s Department of Health Care Services, which administers the project, touted its success, reporting that it has provided care for 22,000 previously untreated Californians with opioid addictions and created 650 new locations where patients can receive MAT.

But the number of new people brought into treatment is only a small fraction of those who need it. In 2019, more than half a million Californians with an opioid use disorder lacked access to treatment, according to a study by the Urban Institute.

The state effort faces many of the same obstacles that have hindered wider acceptance of MAT for years: the stigma of addiction, federal regulations that depress the number of MAT providers, and hostility in some corners of the treatment community to the very notion of using drugs to combat drug addiction.

Moreover, the addiction treatment industry has become a magnet in recent years for unscrupulous operators who aggressively recruit clients, eyes fixed on the dollar signs rather than on evidence-based treatments such as MAT.

Now there’s another, hopefully temporary, challenge. The COVID-19 crisis and related social-distancing measures are forcing MAT practitioners to scramble for new ways to accommodate patients, said Eric Hill, a “substance navigator” at Marshall Medical Center who helps guide patients through their MAT treatment.

Hill said MAT patients entering the program through emergency rooms are now given prescriptions for up to a month, rather than a week. He said he is following up with clients by phone rather than in person, and he and others are trying to arrange video calls between doctors and patients for prescription renewals.

The state program seeks to broaden access to MAT by launching or enhancing treatment programs at ERs, hospitals, primary care clinics, residential treatment programs, county mental health centers, jails and drug courts. Training more doctors to provide MAT is also a pillar of the campaign.

But patients who take anti-addiction drugs can have difficulty finding housing and recovery therapy, which are integral to their treatment. They are often shunned by groups adhering to traditional 12-step theories of sobriety that require participants to be free of drugs — including MAT drugs.

“MAT patients will say that the treatment was working. They were just starting to feel better, going to support groups, back at their jobs, but they had a hard time finding a place to live,” said Hill.

Many patients who stop taking their MAT drugs in order to get a roof over their heads have relapsed, Hill said.

Marlies Perez, a division chief at the state health care department, said the agency “is taking a strong stand against such stigma that prevents patients from their continued recovery.” Through its media campaign, Choose Change California, it seeks to alter perceptions within the recovery community and persuade more doctors and patients to embrace MAT.

The state expansion project puts a strong emphasis on building MAT capacity in emergency rooms, where opioid users often face suspicion.

Of the 320 acute care hospitals with emergency rooms statewide, 52 currently offer MAT. In those hospitals, staff members like Hill help patients get the care they need, including the psychological and social dimensions. Health care department officials say they plan to quadruple the number of participating hospitals to more than 200 over the next few years.

(Photo Courtesy of Jennifer Stilwell)

Opioid misuse is not nearly as deadly in California as in the rest of the U.S., even though the rise of fentanyl has begun to cause bigger problems in the Golden State.

In 2018, the rate of opioid overdose deaths in California stood at 5.8 per 100,000 residents, far below the national average of 14.6 per 100,000. In some rural counties of California, however, opioid death rates exceed the national average. The two states with the highest rates were West Virginia, at 42.4 per 100,000, and Delaware at 39.3.

Another obstacle to MAT expansion, one squarely in the sights of California health authorities, is that many doctors are hesitant to participate because they must undergo federally mandated training for a waiver that allows them to prescribe buprenorphine.

“Doctors can prescribe OxyContin with abandon but not buprenorphine, which has been shown to be helpful to opioid addicts,” said Dr. Aimee Moulin, a director at the California Bridge Program, which helps administer the state’s MAT program.

Buprenorphine is less powerful and less likely to cause fatal overdoses than methadone, another drug commonly used to fight opioid addiction. And doctors who get the waiver for buprenorphine can prescribe it in their offices, while methadone must be administered in federally certified treatment programs.

The state’s health care department said the expansion project has thus far trained 395 new MAT prescribers. But as of July 2019, just 3.2% of prescribers in the state were authorized to prescribe buprenorphine, according to the Urban Institute study.

Dr. Peter Liepmann, a Pasadena-based family physician with an interest in addiction medicine, said it can be difficult to find a buprenorphine prescriber. Not long ago, when he was thinking about opening a practice in Glendale, California, he consulted the Substance Abuse and Mental Health Services Administration’s (SAMHSA) listings of physicians who offer MAT.

“If you were looking for somebody to dispense buprenorphine and you called people on that list, you would have come up with one doctor who ran a cash-only, no-insurance practice, and he was very expensive,” Liepmann said.

The state’s Perez said some doctors may not fully understand the benefits of MAT because medical schools devote little time to addiction training. Another element of the MAT project, she said, is to fund a substance-use-disorder curriculum at training hospitals.

Perez counseled patience: “We didn’t get into this opioid dependency situation overnight, and we’re not going to find a total solution overnight either.”

This KHN story first published on California Healthline, a service of the California Health Care Foundation.

Readers And Tweeters Dive Into Debate Over ‘Medicare For All’

Kaiser Health News gives readers a chance to comment on a recent batch of stories.

Letters to the Editor is a periodic feature. We welcome all comments and will publish a selection. We edit for length and clarity and require full names.


Savings For All?

Your criticism about former Vice President Joe Biden’s “Medicare for All” cost estimates is spot-on but leaves out important savings (“KHN & PolitiFact HealthCheck: Would ‘Medicare For All’ Cost More Than U.S. Budget? Biden Says So. Math Says No,” Feb. 14). Under Biden’s plan, private insurance stays intact, meaning there are premiums and point-of-service costs that do not appear as taxes but are added to the nation’s health care expense. Medicare for All, on the other hand, is zero at the point of service, meaning Americans would have no financial qualms seeking comprehensive care. Public options add bureaucratic costs, are subject to personal income fluctuations and have deductibles and copays. We depend on organizations like yours to present the full picture. Here’s hoping you will, in the public’s interest.

― Dr. Donald Green, Pennington, New Jersey


— Manuel Freire, Fort Lauderdale, Florida


For Alzheimer’s Patients Like Me, Knowing Is Half The Battle

I want to thank Judith Graham for her piece discussing the uncertainty and fear patients feel when faced with the potential onset of Alzheimer’s disease or dementia (“Stalked By The Fear That Dementia Is Stalking You,” Feb. 21).

As an Alzheimer’s patient with a confirmed diagnosis, I know all too well how unsettling it can be to suffer from cognitive decline without knowing the nature of your condition. For me, it started with little things like forgetting a name or misplacing a set of house keys. Still, it wasn’t until I applied to participate in an Alzheimer’s clinical trial and received a PET scan identifying amyloid protein buildup in my brain did I definitively know I had the disease.

Like many of the patients discussed in the article, dealing with these early warning signs can be an enormous source of anxiety — especially when it’s unclear whether or not the cause is Alzheimer’s or another cognitive issue. That’s why getting a precise diagnosis was such a critical step for myself and my husband, Jim.

As mentioned in the article, amyloid PET scans are not fully covered by Medicare, a critically important detail, which I believe must be remedied. As the prevalence of Alzheimer’s continues to grow as our population ages, expanding access to diagnostic tools that can identify this disease will become ever more critical. I remain optimistic that our representatives in Washington can come together and address this issue ― so more patients like me don’t have to live under a cloud of uncertainty.

— Geri Taylor, New York City


An Infusion Of Debt

Glad you are pointing this out (“Patients Stuck With Bills After Insurers Don’t Pay As Promised,” Feb. 7). It’s happening again, post-Affordable Care Act. For us, it’s my husband’s battle with multiple sclerosis, but more the battle with his insurer. It approved his treatment cost for a new drug, sent a letter saying everything was covered. Then, lo and behold, we get a bill for $4,000 that it said we had to pay. No reason or rationale given. So now we are on a payment plan with the hospital that gave him his infusion. Not sure why we even bother with paying our premiums in the first place, considering the out-of-pocket expense and worthlessness of preapprovals; it doesn’t really matter. Please keep writing these articles ― it helps.

― Margaret Paez, Los Angeles


When Choice Of Hospitals Is A Life-Or-Death Choice

Thanks so much for your coverage of death-with-dignity situations (“Terminally Ill, He Wanted Aid-In-Dying. His Catholic Hospital Said No,” Jan. 29). We all need to know as much as possible about the institutions and structures that may prevent patients from choosing a dignified death. Please consider linking to the Catholic ethics rules so readers can read them for themselves. Please make us a map of Colorado showing the hospitals that are abiding by these rules. Please explain that emergency services in rural areas may have no choice but to take patients to the nearest (possibly non-law-abiding) hospital. Rewired has written about Eastern hospitals where serious pregnancy issues were poorly treated by Catholic hospitals.

Many of us do not understand that hospital choice may become a life choice and doctor choice may also become a life choice. And, please, also feature regularly and loudly all the practitioners and organizations being formed to protect patients’ legal right to die. Thanks so much for the good work that you do.

― Diane Curlette, Boulder, Colorado


Taking Pains Over Statistics

In stories about the opioid crisis (“No Quick Fix: Missouri Finds Managing Pain Without Opioids Isn’t Fast Or Easy,” Feb. 13), I always see total death statistics but never a breakdown of how many of the fatalities represent responsible legal users vs. illegal users.

A lot of us elderly folks have a very hard time getting our pain meds nowadays. Thirty used to last me five to seven months, and I took them only when I couldn’t get to sleep due to pain throughout my body. We have discussed it on our seniors’ webpage in our rural area and many of us used to get them. Overdoses and addiction aren’t the norm and aren’t even in the realm of our experiences. Why do we have to pay for others’ mistakes? They don’t outlaw cars even though many people die from wrecks caused by bad drivers!

― William Scriven, Valley Springs, California


— Nicolas Terry, Indianapolis


Collateral Damage From Insurers’ Dispute

When I read Brian Krans’ article about the Dignity-Cigna dispute (“Patients Caught In Crossfire Between Giant Hospital Chain, Large Insurer,” Feb. 6), I was reminded of my own situation: In California, Oscar dropped coverage for all UCLA care facilities in its Covered California (Affordable Care Act) plans, as of this year. I don’t know how many people use Oscar, but the UCLA system is a major health care provider here in West L.A. There’s no indication that there’s a dispute — this is represented as a final decision. UCLA is gone!

I figured I could get similar care from the Providence network, but my first choice for a primary care physician proved a bit odd: On our first visit, he presented at least four ideas that seem outside the medical mainstream. With some embarrassment, I asked for a different PCP. That physician ordered lab work but said no one in the building was authorized by Oscar to do blood draws, so I was sent to a facility in another city … which turned out to be out of business. I was finally referred to a third facility, which turned out to be more convenient than the last ― but the inconvenient run-around for something as simple as a blood draw and the penny-pinching by my insurance company do not bode well for the future of American medicine.

This is the second disruption I’ve had in insurance providers since the ACA began, and another indication that our current health care system is still very broken.

— Gary Davis, Los Angeles


— Scott Gordon, Fennimore, Wisconsin


Raising A Red Flag On Animal Rights Group

As a registered dietitian, I do not promote the keto diet. Mentioned in the article “As VA Tests Keto Diet To Help Diabetic Patients, Skeptics Raise Red Flags” (Feb. 3) is the group Physicians for Responsible Medicine, which is an extreme animal rights group with ties to PETA. About 3% of its members are physicians. Attending a seminar on nutrition for cardiovascular disease, I was dismayed to see the speaker had ties to Physicians for Responsible Medicine. After hearing about all the terrible effects of eating animal products, when the speaker could no longer contain himself and shouted out, “You don’t eat dead animals, do you?” I walked out and called my professional association to complain. Please do not give credibility to this organization.

― Mary Lucius, Beavercreek, Ohio


— Nancy Coney, South Bend, Indiana


Price-Gouging At Its Core

I read your most recent story on surprise medical billing (“When Your Doctor Is Also A Lobbyist: Inside The War Over Surprise Medical Bills,” Feb. 12) and found it to be largely one-sided against physicians and, somewhat, hospitals. Although private equity certainly is an influence in the conversation, very little to any time was spent discussing the efforts of insurance companies to continually drive down reimbursements. Furthermore, when we look at Medicare rates, which insurance companies rates are based on, the actual reimbursement has not significantly increased over the past few decades when you account for inflation or the consumer price index. So to paint the picture that physicians are trying to gouge patients does not seem very fair. While there are always a few bad apples and opportunists, the majority of physicians simply want to be paid fairly. Remember: Over the past few years, insurance companies have reported record profits — billions per fiscal quarter. Why are we not talking about why more of our premiums are not going to the provision of health care and instead to shareholders? I think the article fails to paint the entire picture for a lay audience. Nowhere does it report the amount of money spent on lobbying by the insurance industry.

― Dr. Shamie Das, Atlanta


— Gene Christian, Memphis, Tennessee


Health Care’s High-Cost Formula Goes Beyond Drug Prices

What patients care about more than drug prices is how much they have to pay out-of-pocket for their critical medications (“Watch: Let’s Talk About Trump’s Health Care Policies,” Feb. 4). Because of high-deductible health plans and tiered formularies, what patients pay at the pharmacy counter often has less to do with the list price of the drugs they need and more to do with the design of their health benefits. It is especially troubling that high-value drugs for chronic conditions like diabetes are often subject to unaffordable cost sharing that hits disproportionately at the beginning of the benefit year. Employers and health plans need to exempt these drugs from high deductibles as now permitted by the IRS. The same goes for Medicare Part D, which hugely penalizes seriously ill patients at the start of each year when they have yet to reach the catastrophic threshold.

Clearly, the problem of high drug prices needs to be addressed, but this will require a systematic and comprehensive approach that is certain to be resisted by one vested interest or another. In the meantime, patients need immediate relief from unaffordable out-of-pocket costs. Some steps that should be taken immediately include exempting high-value care from plan deductibles and capping and smoothing out-of-pocket costs in Medicare Part D. Much, if not all, of the cost associated with these measures can be offset by not paying for low- and no-value care that costs billions per year.

― Daniel Klein, president & CEO of the Patient Access Network (PAN) Foundation, Washington, D.C.


Cause For Investigation

The example you give presents an illegal activity by the home health agency (“Why Home Health Care Is Suddenly Harder To Come By For Medicare Patients,” Feb. 3). At a minimum, that agency should have a complaint registered against them, if not investigated by the Office of the Inspector General. The agency lied about Medicare not covering the patient’s needs. And they should have had the patient sign an ABN/NOMNC (Advance Beneficiary Notice/Notice of Medicare Non-Coverage) and explained it to the patient as required, so he could choose to appeal with the Quality Improvement Organization (QIO) for coverage of medically necessary care.

Kaiser Health News needs to provide education for the elderly and families to make sure they don’t fall prey to this type of behavior. If the agency simply says “I don’t have the staff to cover you,” they are responsible to assist the patient in finding another agency. But they cannot elect to just stop providing a medically necessary service, just as they cannot keep seeing someone when it is not medically necessary. Key here is to get people to know their rights as a Medicare beneficiary.

― Edward Dieringer, Salt Lake City


— Tom Cassels, Arlington, Virginia


— Peg Graham, Washington, D.C.


Privacy Concern: I Lack Seamless Access To My Own Records

I work in a medical center and have taken HIPAA training repeatedly over the years. I have also noted the staggering amount of money spent on medical electronic records. Yet in four attempts over a 20-year period, I have yet to get my medical records sent from one doctor or practice to another. I could not get records of my husband’s hospital stay sent to his primary physician, dental records sent from one dentist to another and, this fall, the pertinent records when my rheumatologist changed practices. My insurance paid for blood tests four times a year and X-rays over a five-year period. I have contacted the facilities and submitted a complaint to HHS Office for Civil Rights, which appears to be the correct office.

I find it unacceptable that, with all the talk about how expensive medical care is, tests over time are not easily available to patients when requested. I read Kaiser Health News regularly and at least I feel informed about what can go wrong. Thank you.

— Susan Klimley, New York City


— Dr. Sarah Nguyen, Los Angeles