Category: Legislation

Montana Lawmakers Seek More Information About Governor’s HEART Fund

Republican Gov. Greg Gianforte’s Healing and Ending Addiction Through Recovery and Treatment fund has spent $5.2 million since 2021. With a proposed increase, providers and lawmakers alike want to tap into the money.

A fund championed by Gov. Greg Gianforte to fill gaps in Montana’s substance use and behavioral health treatment programs has spent $5.2 million since last year as the state waits for an additional $19 million in federal funding.

Now, the Republican governor wants to put more state money into the Healing and Ending Addiction Through Recovery and Treatment initiative, but lawmakers and mental health advocates are asking for more accountability and clarity on how the money is spent.

Republican Rep. Jennifer Carlson, chair of the Human Services Committee of the Montana House of Representatives, said her committee has heard bill proposals seeking to use HEART money for child care and suicide prevention programs, among others. She is sponsoring a bill to increase HEART initiative reporting requirements.

“You really have to think, is that what that money is for, or is that just what’s convenient?” said Carlson.

Matt Kuntz, executive director of the Montana chapter of the National Alliance on Mental Illness, said a lot of questions have been floating around about the initiative this legislative session.

“Nobody really knows exactly how this is being spent or the process of how to get it,” Kuntz said.

The legislature passed Gianforte’s HEART initiative soon after he took office. It uses revenue primarily from recreational marijuana taxes for the state’s $6 million annual share to be distributed to programs dedicated to treating substance use and mental health disorders.

A federal match would bring the fund total to $25 million, but the state is waiting for full approval of its Medicaid waiver application from the Centers for Medicare & Medicaid Services. The federal agency approved part of the waiver last year.

“Until CMS approves the full HEART waiver, the state is limited in what we can do,” said Jon Ebelt, spokesperson for the state Department of Public Health and Human Services.

The health department submits a report to CMS four times a year. Department officials did not respond to a request by KHN for the latest report. The department is supposed to receive reports from tribal nations on how their funds were used. It didn’t specify whether it had received any.

Carlson’s House Bill 310 would require the department to report HEART initiative spending to the Children, Families, Health, and Human Services Interim Committee each year. That reporting would allow lawmakers to know what the money had already been used for, and if there might be a better way to spend it, Carlson said.

When Gianforte introduced the HEART initiative during his 2021 State of the State speech, he said it was designed to give directly to local communities, which know their own needs best.

“This is not bigger government,” the governor said at the time.

The HEART money is distributed through grants and Medicaid-funded services. Of the $5.2 million distributed since 2022, $1.5 million has gone to Medicaid for services like inpatient and residential chemical dependency services, Ebelt said.

Eight Indigenous tribal nations have received $1 million covering fiscal year 2022, the first year of the fund, and 2023, the current fiscal year, which ends June 30. Those grants went toward substance use prevention; mental health promotion; mental health crisis, treatment, and recovery services; and tobacco cessation and prevention.

Seven county detention centers received a total of $2.7 million in HEART money through a competitive grant process to provide behavioral health services at those facilities.

Missoula County hired a therapist, jail care coordinator, and mental health transport officer with its share. Gallatin County hired a counselor and two social workers, and Lewis and Clark County hired a therapist, case manager, and education and transport manager.

Jackie Kerry Lemon, program and facilities director at the Gallatin County Detention Center, said the money had to be used for mental health and addiction services. “Our population is often in crisis when they come to us, so having that ability to have a therapist see them really does help with their anxiety and their needs at a good time,” Kerry Lemon said.

Democratic Rep. Mary Caferro said the HEART money could go toward increases in the Medicaid rates paid to health care providers, which a state study found fall short of the cost of care, or mobile crisis response teams, which the health department intends to provide as a Medicaid service.

Caferro is sponsoring a bill on behalf of the National Alliance on Mental Illness to add youth suicide prevention to the list of programs eligible for HEART funding.

Mary Windecker, executive director of the Behavioral Health Alliance of Montana, said the HEART fund initially was meant to support tribes and county jails, and only recently did it start funding community substance use and mental health programs, after last year’s partial Medicaid waiver approval.

That allowed larger substance use disorder treatment centers (more than 17 beds) to receive Medicaid reimbursement for short-term stays at institutions for mental illness, like Rimrock in Billings and the Badlands Treatment Center in Glendive.

From July 2022 to January 2023, Ebelt said, 276 Medicaid recipients were treated in Rimrock and Badlands. A facility in Clinton, the Recovery Centers of Montana, opened in December and will be licensed for 55 additional beds able to serve patients with the new Medicaid benefit, Ebelt said. Gianforte proposed in his state budget to increase the amount going into the HEART fund by changing the funding formula from $6 million a year to 11% of Montana’s annual recreational marijuana tax revenue.

The Behavioral Health Alliance recommended that change, but, as with many of the health-related proposals in this legislative session, a major factor in the HEART initiative’s success will be whether Medicaid provider rates are raised enough, Windecker said. If provider rates aren’t funded at the full cost of care, people won’t be available to provide the care the initiative promises, she said.

The committee that meets to determine the health department’s budget will hear a presentation about the HEART initiative on Feb. 9.

Keely Larson is the KHN fellow for the UM Legislative News Service, a partnership of the University of Montana School of Journalism, the Montana Newspaper Association, and Kaiser Health News. Larson is a graduate student in environmental and natural resources journalism at the University of Montana.

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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A Free-for-All From Readers and Tweeters, From Medical Debt to Homelessness

KHN 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.

It is appalling that an article like this even has to be written. Our "healthcare" system is broken.How to get rid of medical debt — or avoid it in the first place https://t.co/EIo7lHps8k

— Karin Wiberg (@kswiberg) July 1, 2022

— Karin Wiberg, Raleigh, North Carolina

Lifesaving Information

I just want to thank you from the bottom of my heart for the work you do that exposes the utter brokenness of America’s health system (“Diagnosis: Debt: How to Get Rid of Medical Debt — Or Avoid It in the First Place,” July 1). You are helping to fix it!

— Ruth Worley, Athens, Ohio

Recovering from being sick or caring for a sick loved one should not ruin any American’s finances. Here are some tactics to navigate the system. https://t.co/ykvDkUecj0

— Bayeté (@BayeteKenan) July 10, 2022

— Bayeté Ross Smith, Harlem, New York

Patients Left Holding the Bag

Your “Diagnosis: Debt” articles are interesting and serve as further examples of how the health care industry is set up for the health care system and not the people who use it.

In the USA, medical debt should not be an issue, but we don’t teach people how to save or understand how to navigate the system. I am a nurse blogger/advocate and see the repercussions of what people go through who have inadequate insurance and lack savings or the ability to understand what is happening to them when they are thrust into the complex health care system. But, in reality, none of us really think about our health or the health care system till we are in the middle of a crisis. If we are honest, none of us are really prepared for a catastrophic event, and this is what we need to work on going further through education and advocacy.

I will continue to educate the public in my small way so people can understand their role in our health care system so they are prepared for a medical event and know that they can use their voice to speak up and advocate for themselves.

— Anne Llewellyn, Plantation, Florida

Portland has become a wasteland! Where are the environmentalists at least? Oh yeah, they're all in their gated communities, worrying about climate change and plastic straws for the rest of us. (hope you can see this LA Times article)https://t.co/WrboM9vtPs

— Bob Beddingfield (@bobbeddingfield) June 23, 2022

— Bob Beddingfield, Houston

Destination: Disaster

We visited Portland, Oregon, a year ago for a vacation and we will never go back: stores that don’t give baskets because people use them to steal. Stores that put poles on carts to keep people from racing out of the store with them full of merchandise. Closed storefronts. Homeless people everywhere (“Sobering Lessons in Untying the Knot of a Homeless Crisis,” June 21).

It was like a Third World country. I’m not a Republican, very far from it, but accepting the idea that anyone who wants can live on the streets, dump their trash, and get subsidized by the city cannot end well. And this problem is not limited to Portland. San Francisco is in a very similar situation with crime, drug abuse, and homelessness.

There is no one-size-fits-all solution. Throwing money at the problem and then ignoring the continuing unresolved problem hasn’t worked and, I think, never will.

The idea that a city can host an unlimited number of drug and alcohol addicts at public expense won’t work.

The idea that shoplifting, car break-ins, robberies, etc. are allowed, not arrested, not prosecuted, not punished can never work out well.

And people wonder why the Democrats are in such deep, deep trouble in spite of the horrible ideas the Republicans promote.

This will not end well.

— David Alexander, Palo Alto, California

Quite possible the best news story about our local homeless challenges I have read recently. 'Not safe anymore': Portland confronts the limits of its support for homeless services #homless #Portland https://t.co/Ujr5KzhYAi

— Ben Brown Jr. (@BenBrownJunior) June 22, 2022

— Ben Brown Jr., Beaverton, Oregon

On Wheelchair Repairs, Steering Clear of Error

As the CEO of National Seating & Mobility (NSM), I applaud the work of KHN in providing in-depth reporting about important issues in health care, including the complex rehabilitation technology (CRT) industry.

However, the recent article “Despite a First-Ever ‘Right-to-Repair’ Law, There’s No Easy Fix for Wheelchair Users” (June 2) presented several inaccuracies, misrepresentations, and errors in its characterization of NSM and our work.

The article stated that NSM and other CRT providers have limited their investments in service and repair to increase profits. NSM leadership has continuously invested in our service and repair business, including establishing a career path and certification program to professionalize the service technician role, improving onboarding and ongoing training programs, reorganizing our funding team to introduce repair-specific funding specialists to better assist clients in the repair process, investing in market analysis on competitive wages that resulted in a 15%-20% hourly pay increase for technicians, and more. In 2022, NSM has almost 500 service technicians on staff, which is 22% more technicians per count of client-delivered orders versus 2019. Our investment in service and repair is long-standing and will continue.

The article also suggested that Medicare’s use of competitive bidding favors large companies, often at the expense of quality and customer service. NSM was not part of the previous bidding session for durable medical equipment (DME) to establish current rates and was not awarded any Medicare contracts as a result. Most of the products we provide are considered CRT and are exempt from the competitive bid process and pricing. Due to section 16005 of the 21st Century Cures Act and House Bill H.R. 1865, product codes that can be used for CRT or basic DME are paid at the normal rate for CRT instead of competitive pricing.

Finally, the article makes false assumptions about our company: that we keep a limited inventory of parts, and we have little incentive to hire technicians or pay for training because we lose money with repairs.

Each mobility solution — and therefore each repair—is highly customized to a client’s needs. This customization means parts that are replaced less frequently across our client population aren’t likely to be stocked versus those parts that are frequently replaced. The current global supply chain disruption has also affected our inventory; the amount of stock we have on hand is entirely dependent upon availability. Additionally, the labor shortage our country is experiencing has created a challenge across all industries, ours included.

Repair reimbursement is a loss-leader for the CRT industry, exacerbated recently due to inflation in the supply chain and labor markets. While other companies are forced to turn down repairs due to these challenges, NSM continues to provide repairs because it is the right thing to do.

NSM is a customer service business, earning our business in every client interaction. We recognize improvements are needed, and we are committed to investing in advocacy, programs, and collaborative industry efforts to lead our industry in a new direction to improve the lives of those we serve.

— Bill Mixon, CEO of National Seating & Mobility, Franklin, Tennessee

This needs to change! It should not be so complicated to get simple repairs made to #wheelchairs!https://t.co/MpTAyeBEms via @KHNews #DisabilityRights

— W. Ron Adams (@WRonAdams) June 11, 2022

— W. Ron Adams, Erlanger, Kentucky

These folks have also worked so hard to get landmark legislation passed across the country, including a really important first step in Colorado on the right to repair wheelchairs: https://t.co/xaZPRnaYDD

— Hayley Tsukayama (@htsuka) June 3, 2022

— Hayley Tsukayama, San Francisco

Clearing the Air on Vaping vs. Smoking

I just listened to your piece on the FDA banning Juul (“KHN’s ‘What the Health?’: The FDA Goes After Nicotine,” June 23). One of your panelists mentioned she’d read (actually, she said she’d read only the headline) about diacetyl (she didn’t want to even try to pronounce this) and popcorn lung.

I believe it is irresponsible for so-called scientific experts to comment on things they haven’t read properly and things they clearly have no knowledge about. Diacetyl is present in cigarette smoke in concentrations hundreds of times higher than in vape products and yet there hasn’t been a single case of popcorn lung attributed to smoking. Anything to do with the toxicity of a chemical present must surely make reference to the concentrations, putting it in context. The fact that a chemical is detectable obviously doesn’t mean that it’s harmful in the concentrations present.

There is a terrible misunderstanding among consumers and indeed health care professionals regarding the relative harms of vaping vs. smoking — given that the vast majority of vapers are ex- or current cigarette smokers, this is the relevant point.

I suggest that the scientific credibility of your program is compromised by such sloppy and inaccurate commentary.

— Mark Dickinson, Twickenham, Middlesex, United Kingdom

Be wary when big companies come in to "save" local institutions, whether it be the hometown newspaper, local education or the hospital.https://t.co/gV4ZJDkR71

— Dave Gragg (@DaveGragg) June 15, 2022

— Dave Gragg, Republic, Missouri

Shoring Up Rural Care

Since 2010, 138 rural hospitals have closed, leaving many communities without access to health care. In rural areas, this can create a domino effect of other hardships — a hospital often serves as the largest employer, and when these facilities shut down, the hardware store or restaurants often face similar fates. Put simply, when a rural hospital shutters, it becomes harder for the town itself to survive (“Patients for Profit: Buy and Bust: When Private Equity Comes for Rural Hospitals,” June 15).

Then there is the most critical aspect: Without hospitals, rural Americans lose timely access to lifesaving medical care. On average, the distance between a rural hospital and the closest facility with 100 or more acute care beds is 28.9 miles. Preserving access to care in our rural communities and ensuring hospitals remain the cornerstone of the economy is essential. This is why addressing the hospital closure crisis must be a top priority in Congress.

To determine what needs to be done, it can be helpful to examine the cause of the crisis. Multiple factors have contributed to the high number of rural hospital closures over the past decade, with two major factors being slim or negative hospital operating margins and workforce shortages. The covid-19 pandemic has further strained the health care industry, leading to increased levels of provider burnout and perpetuating the workforce shortage.

On top of this, rural providers continue to feel the strain of Medicare sequestration, which reduces eligible payments to rural hospitals from Medicare by 2%. Relief from Medicare sequestration during the pandemic expired on April 1, contributing to the financial burdens rural hospitals already face. With many rural hospitals already operating on negative margins, these decreased reimbursements could be disastrous.

Further, due to recent statutory changes, provider-based rural health clinics affiliated with small rural hospitals are not eligible for cost-based reimbursement as they historically were. Unless Congress addresses this shortcoming, it may not be financially feasible for small rural hospitals to provide primary care in these settings, and care gaps in rural communities may widen.

Reps. Sam Graves, a Republican from Missouri, and Jared Huffman, a Democrat from California, worked together to introduce the Save America’s Rural Hospital Act. This legislation will help rural health care providers keep their doors open and ensure rural communities have access to the care they need and deserve.

For example, it will permanently eliminate Medicare sequestration for rural hospitals, allowing these facilities to be reimbursed for the entirety of their eligible cost. It will make permanent increased Medicare payments for ground ambulance services in rural and super rural areas. Further, this bill will reauthorize the Medicare Rural Hospital Flexibility Program to provide new grants to help eligible rural providers transition to new models and evolve to meet community needs in their changing health care environments.

To address potential primary care shortages, it will also create a voluntary quality measure reporting program for provider-based rural health clinics. If these facilities choose to participate, they will receive increased reimbursement in exchange.

Health care access is critical to preserving the rural way of life for more than 60 million rural Americans. This legislation must be considered to ensure stability in our communities, which will ultimately benefit the country as a whole.

— Alan Morgan, CEO of NRHA, Kansas City, Missouri

In short, our system is not set up for the unique needs of rural hospitals, making them financially stretched. Private equity swoops in, buys the hospital, takes the COVID-19 relief money, closes the hospital, then runs. #ruralhealth https://t.co/qZBHG7yeeH

— Whitney Zahnd (@WhitneyZahnd) June 15, 2022

— Whitney Zahnd, Iowa City, Iowa

A Pitch for Integrated Behavioral Health

I am a clinical psychologist who works at a large, safety-net academic health center in Colorado. I am writing about your recent article “Patients Seek Mental Health Care From Their Doctor but Find Health Plans Standing in the Way” (June 8). I appreciate the focus of this article on some of the barriers patients face in trying to access mental health care in the U.S. However, I was a little concerned that your article did not mention the rapidly growing field of integrated behavioral health. Although I understand that not all primary care providers’ offices employ an integrated behavioral health clinician, the numbers are growing quickly across the country. For example, in the hospital where I work, there is at least one IBH clinician in every community primary care center, and in most of the specialty clinics (e.g. oncology, OB-GYN) as well.

While I think PCPs are certainly able to dispense basic-level mental health advice (e.g., abdominal breathing exercises for anxiety), I don’t think the answer is to turn over mental health care to medical professionals, any more than I believe it would be a good idea to turn over a patient’s diabetes management to a psychologist, even if that psychologist had some basic training in how to treat diabetes. Instead, I believe it is in patients’ best interests to continue to advocate and nurture a team-based approach that includes both medical and mental health specialists within the same clinic.

— Trina Seefeldt, Denver

This madness must stop. Most of us in primary care do address/treat mental health problems. #insurance #healthcare #SinglePayer would solve this. Patients Seek Mental Health Care From Their Doctor But Find Health Plans Standing in the Way https://t.co/YyAzJ0GylL via @khnews

— Andrea DeSantis DO (@adesantisb) June 10, 2022

— Dr. Andrea DeSantis, Charlotte, North Carolina

In Defense of Free Clinics

I was reading with interest — and then dismay — at your article published June 23 on the Hispanic insurance gap (“Trump’s Legacy Looms Large as Colorado Aims to Close the Hispanic Insurance Gap”). In the opening paragraphs, you reference a man who had symptoms that “free clinics told him were hemorrhoids but were actually colon cancer.”

In that one phrase, you single-handedly and forcefully implied that free clinics deliver poor care and are not to be trusted. With the next sentence about his tragic death, you solidify that implication.

As a charitable clinic with more than 26 years of serving the uninsured in our community, I take great exception to this careless mischaracterization of a sector that has delivered high-quality care to millions of people who have fallen through the cracks.

Most free and charitable clinics care for people with absolutely no insurance. This can significantly limit the amount of outside testing and diagnostics that can be done with patients, even if they are symptomatic. Up until this year, our clinic had absolutely no option for sending someone to a gastroenterologist for a colonoscopy unless they were willing to pay out-of-pocket — upward of $5,000. We have to regularly tell people that we do not have any good options for them because we cannot access certain specialists or tests. Do they need it? Yes. Can we provide it to them? No. Does this incredible inequity and frustration with the health care system that prevents our patients from getting the advanced care they need weigh on us every day? Absolutely.

Free and charitable clinics are not part of the problem. They are part of the solution. And the broad generalization you made impacts how the public perceives this incredibly important piece of the health care sector.

For more information on free and charitable clinics, I invite readers to learn about the National Association of Free and Charitable Clinics at https://nafcclinics.org/.

— Suzanne Hoban, executive director of Family Health Partnership Clinic, Crystal Lake, Illinois

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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Readers and Tweeters Weigh In on America’s Medical Debt, Obesity Epidemic, and Opioid Battles

KHN 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.

So, you're American, you have a lousy health insurance plan, you get cancer. You survive cancer. But can you survive your massive medical $$$ debt?https://t.co/e6Jzw9W4SR

— Laurie Garrett (@Laurie_Garrett) June 17, 2022

— Laurie Garrett, New York City

Medical Debt as the Ultimate Medical Mystery

I read your investigation about health care and debt on NPR’s site (“Diagnosis: Debt: 100 Million People in America Are Saddled With Health Care Debt,” June 16). However, it seems the story’s focus is wrong. It shouldn’t be about how we pay for these astronomical medical bills but why are they so high to begin with? How do hospitals get away with their fees? For example, my daughter, who is 7, has been to the hospital/emergency room five times in her life. Each bill has been completely different with no rhyme or reason. The latest one was $7,000 for about a three-hour ER visit and for two IVs! It’s the highest bill we have ever seen, and that includes a two-night stay at a hospital. In addition to this bill, collections called us — and it hadn’t even been 60 days since our visit and had been only a few weeks since the hospital visit. So now our credit score could be affected, and we haven’t even had a chance to review or figure out how to pay this bill. Would love all this explained.

— Ilyssa Block, Kansas City, Missouri

A Hard-Learned History Lesson

Although I liked the article by Noam N. Levey and Aneri Pattani on people burdened by medical debt (“Diagnosis: Debt: Upended: How Medical Debt Changed Their Lives,” June 16), it uses the term “grandfathered in.” This term was used as a rule to prevent Black people from voting after the Civil War. Please make an effort to refrain from using this offensive term.

— MB Piccirilli, Portland, Oregon

Upended: How Medical Debt Changed Their Lives https://t.co/IbJwJoOt3N @khnews This has to stop! NFP healthcare systems destroying the lives of the people they are designed to serve?!? Unethical. STOP! #healthcare #UniversalHealthCare #MedicareForAll #bankruptcy

— Andrew Gallan PhD ⛳️🇺🇦 (@agallan) June 20, 2022

— Andrew Gallan, Boca Raton, Florida

Steering Clear of Predatory Billing

Every month I see and hear these “Bill of the Month” stories on NPR’s webpage or broadcast on the NPR affiliate station in my area (“Her First Colonoscopy Cost Her $0. Her Second Cost $2,185. Why?” May 31). Every month I pat myself on the back for having decided that there is no way I am ever going to put myself through so-called screenings, which are just one more avenue for the U.S. health delivery system to screw people over as that health delivery system is well aware that there is no oversight for this type of predatory billing. I can tell you at my age and with only Social Security retirement as sole income, I couldn’t ever hope to hire legal help to dispute a bill like those featured in “Bill of the Month” — a bill like that would either cause me to have an immediate heart attack or file bankruptcy or both. Nope. No screenings. I actually have decided that, if I have any choice in the matter, I will simply forgo any so-called medical care. Obviously, if I keel over and pass out and someone hauls my sorry self into the emergency room, I won’t have the choice (except to walk out once “revived”). Given the state of health care and the predatory behaviors of the bottom-lining money-hungry hospitals, clinics, and even just doctors, my choice is simply to opt out. KHN needs to use its voice to tell the U.S. medical community that people are so tired of the garbage that they simply refuse care.

— Jan Baldwin, Coburg, Oregon

First colonoscopy: $0Second colonoscopy: $2kAnother example of how the fine print can put patients on the hook for bills that should be covered, especially in this case of a preventative screening. Patients deserve better.https://t.co/v55XVdGAeB

— Terry Wilcox (@Terrilox) June 2, 2022

— Terry Wilcox, Vienna, Virginia

In Michelle Andrews’ story about unexpected costs after a polyp removal during a colonoscopy, she states the anesthesiologist “merely administers a sedative.” This is an understatement. Anesthesiologists perform a review of the patient’s chart, see the patient pre-procedure, monitor their vitals during the procedure, and assess them post-procedurally. Furthermore, anesthesiologists are prepared to manage unexpected emergencies, including unexpected aspiration, allergic reactions, cardiac arrest, etc. This is more than “merely administering a sedative.”

We keep folks from dying or having complications and train a long time to do so. The flippant manner in which our actions are framed in the article is unfortunate.

— Dr. Elizabeth Leweling, Chicago

Preventive care, like screening colonoscopies, are free of charge to patients under the Affordable Care Act. @DrLindaMD @AlexMMTri @EvanKirstel @FriedbergEric @nkagetsu @rstraxMDhttps://t.co/qLP9l5SSPl

— Ian Weissman, DO (@DrIanWeissman) June 1, 2022

— Dr. Ian Weissman, Milwaukee

As president of the American Society for Gastrointestinal Endoscopy, I listened with interest to a recent segment on “All Things Considered” regarding patient cost sharing for a screening colonoscopy. The segment featured patient Elizabeth Melville, who received a bill for her screening colonoscopy that involved a removal of a polyp.

I was dismayed by the segment, which included several factually incorrect and misleading statements by Dr. Elisabeth Rosenthal, and which were incredibly damaging to efforts to eliminate impediments and misinformation about screening colonoscopy. ASGE has been at the forefront of policy efforts to eliminate patient out-of-pocket costs for screening colonoscopy, including those screenings that involve the removal of a polyp or other tissue. As the segment correctly noted, the Affordable Care Act provides for coverage without patient cost sharing of preventive services that have an “A” or “B” rating from the U.S. Preventive Services Task Force, which includes colorectal cancer screening. Recognizing that colonoscopy is the only cancer screening modality that also allows for actual removal of precancerous lesions in real time (and thus preventing the cancer), it is particularly important that patients and consumers understand the facts.

Following passage of the ACA, legislative and regulatory corrective actions have been necessary to ensure that patients who undergo a screening colonoscopy that includes a polyp removal are not stuck with a surprise bill. As noted, screening colonoscopy is a unique preventive service in that it not only detects cancer, but it can prevent it through removal of suspicious or potentially precancerous polyps or lesions. In 2020, Congress passed legislation that would phase out by 2030 cost sharing for Medicare beneficiaries when a screening colonoscopy turns diagnostic during the screening encounter. That means, if a Medicare beneficiary has a screening colonoscopy today and a polyp is removed, that patient is likely to have an out-of-pocket payment obligation.

The difference in cost-sharing rules for commercially insured patients and Medicare beneficiaries has created confusion for patients, and the changes in regulation have created complex billing scenarios. Dr. Rosenthal referred to billing for colonoscopy as a “gray area.” This is not a gray area to ASGE, as coding rules are clear. But there are scenarios that could impact whether a patient has an out-of-pocket obligation for a colonoscopy. For example, often insurers will not cover a screening colonoscopy without cost sharing if the screening occurs less than 10 years after the patient’s previous colonoscopy. These shorter screening intervals typically occur when a patient is considered high-risk, or if there was a finding during the previous colonoscopy, such as a polyp, as used in your illustration. Many insurers regard these colonoscopies as “surveillance” or “high-risk” colonoscopies and will not cover them as a preventive screening without cost sharing. This is not the decision of the physician or hospital; this is a decision made by the insurance company.

I was particularly struck by Dr. Rosenthal’s comment that “it is not OK to change the game in the middle of the test,” which leads to a patient getting a bill. I want to be very clear that when a patient is scheduled for a screening colonoscopy, the physician performing the colonoscopy has no idea whether a polyp or tissue will be found and will need to be removed. This is not a “gotcha” game that physicians are playing with patients, as insinuated by Dr. Rosenthal’s remarks; there are coding and billing rules that must be followed when facilities and physicians are submitting claims to insurance companies. ASGE continually works to ensure that we educate and promulgate coding rules and updated guidance for our 15,000 members worldwide.

The cost-sharing policy for colorectal cancer screening, and screening colonoscopy specifically, is complex and confusing. We are disappointed that NPR did not use the segment as an opportunity to work through the complexity to provide consumers with a better guide of questions to ask their insurance company before scheduling a colonoscopy, including whether a screening colonoscopy performed at an interval of less than 10 years will be covered under their health plan without cost sharing.

— Dr. Bret T. Petersen, ASGE president, Rochester, Minnesota

Great Bill of the Month reporting today by @mandrews110 for @KHNews. Nobody likes getting a colonoscopy. Patients shouldn't be penalized for doing the right thing and getting recommended cancer screenings: https://t.co/cNlEj85IZ4

— Ryan Holeywell (@RyanHoleywell) May 31, 2022

— Ryan Holeywell, Washington, D.C.

Taking the Doctor’s Advice

Dr. Taison Bell was wonderful to listen to (“Watch: UVA Doctor Talks About the State of the Pandemic and Health Equity,” May 26). I really appreciated his presentation and the valuable things he had to say. Thanks for including it in your KHN mailing!

— Jan McDermott, San Francisco

I spoke with ⁦@hnorms⁩ from ⁦@KHNews⁩ about the state of the pandemic and health equity. There is still a lot to be done to movement smart policies that help high risk communities of color. https://t.co/LAf2WCIN0X

— Dr. Taison Bell (@TaisonBell) May 26, 2022

— Dr. Taison Bell, Charlottesville, Virginia

Mad Over ‘New MADD’ Coverage

This article is grossly inaccurate and insulting (“The New MADD Movement: Parents Rise Up Against Drug Deaths,” May 23). Most fentanyl users are not all-star athletes or honor students. Their parents are not more educated than the parents of addicts. And the parents of addicts have been mobilized for years, with many feeling that the fentanyl movement has distracted attention away from needed health care. The article says that the drugs are being introduced by Mexican cartels that seek vengeance against low-level dealers, many of whom are just friends getting things for one another. The article distinguishes between drug users and fentanyl “victims,” creating and reinforcing the stigma these groups claim to be trying to eliminate. It does a great disservice to those of us who lost children to addiction and overdose, and is insulting to our children and to us as parents. Thank you.

— Susan Elamri, Detroit

Interesting read detailing the lack of accountability for drug dealers selling fentanyl laced counterfeit pills resulting in death/overdoses. Consequences and rehabilitation should not be mutually exclusive solutions, we can do both. https://t.co/KlvBH3O1kq

— Chief Paco Balderrama (@BalderramaPaco) May 23, 2022

— Paco Balderrama, chief of police, Fresno, California

When ‘Overweight’ Is ‘Normal’

Quoting from the article “‘Almost Like Malpractice’: To Shed Bias, Doctors Get Schooled to Look Beyond Obesity” (May 24): “Research has long shown that doctors are less likely to respect patients who are overweight or obese, even as nearly three-quarters of adults in the U.S. now fall into one of those categories.”

Perhaps the answer is to change the scale of weight. Why do 25% of adults get to be called “normal” and 75% of adults are “overweight”? Let’s base the decision on reality-based observation!

— Leslie Rigg, Lake Worth Beach, Florida

1) Anti-fat bias is real and certainly an issue. For physicians and others who treat people with #obesity, the question becomes where to draw the line. 'Almost Like Malpractice': To Shed Bias, Doctors Get Schooled to Look Beyond Obesity https://t.co/ap127widIs via @khnews

— Stewart Lonky, MD (@LonkyMD) May 24, 2022

— Dr. Stewart Lonky, Los Angeles

Innocent Until Proven Otherwise

I wanted to raise a concern about the story “‘Desperate Situation’: States Are Housing High-Needs Foster Kids in Offices and Hotels” (June 1) — and it’s certainly not unique to your story. It says:

“These children already face tremendous challenges, having been given up by their parents voluntarily or removed from their homes due to abuse, neglect, or abandonment.”

Sometimes, of course, that’s true. But no reporter would write that every person in jail is a criminal. Many are awaiting trial and can’t make bail. Similarly, children can be in foster care for weeks, even months before any court ever determines if they have been “abused” or “neglected.” Until then, they are in foster care because their parents have been *accused* of abuse or neglect.

(Also, by the way, neglect laws are so broad and vague that often what the parent really is guilty of is poverty — but that’s another issue.)

— Richard Wexler, executive director of the National Coalition for Child Protection Reform, Alexandria, Virginia

[Editor’s note: Thanks so much for your insight. The article has been updated to reflect that the parents are absent “due to accusations of abuse, neglect, or abandonment.”]

.@sclaudwhithead looks at "hoteling," Georgia's practice that makes high-need foster kids sometimes sleep in hotels or offices. The pandemic made the problem worse, but state lawmakers spent more to try to pay extra for foster parents to take kids. #gapol https://t.co/xRXbKCSVEM

— Jeff Amy (@jeffamy) June 1, 2022

— Jeff Amy, Atlanta

Key to Harm Reduction: Buy-In From People With Addiction

With overdose deaths skyrocketing to never-before-seen levels, the United States needs harm reduction strategies to protect the health and wellness of Americans. In 2020, 41 million Americans needed substance use treatment within the previous year; however, of those who needed such treatment but did not receive it at a specialty facility, a staggering 97.5% did not feel they needed it. Although America has a troubling treatment gap exacerbated by systemic legal and regulatory barriers to evidence-based addiction care, most people who need substance use treatment don’t want this treatment as it is currently being offered.

To support our friends and family members living with addiction, our system must also embrace harm reduction approaches that engage people who use drugs (PWUD) before they are ready for abstinence-based treatment (“As Biden Fights Overdoses, Harm Reduction Groups Face Local Opposition,” June 14).

Harm reduction saves lives. Drug checking services and naloxone distribution prevent overdose deaths, while syringe and related service programs help stop the spread of infectious diseases such as HIV/AIDS and hepatitis. These are all worthy ends in themselves, but harm reduction has the further benefit of building a meaningful alliance between health care professionals and PWUD. With this therapeutic relationship, PWUD have facilitated access to high-quality, evidence-based treatment and services when they become ready for this help. It’s an obvious point, but too many people overlook the fact that a person can’t receive treatment or enter recovery if they’re dead.

As a physician, I swore an oath to do no harm — not to do nothing. Failing to embrace and expand harm reduction efforts, by definition, leaves too many of our friends, family members, and loved ones at an unacceptable risk of dying. The dichotomy between offering more addiction treatment and providing PWUD with the tools they need to live healthier lives is a false choice. The United States must simultaneously invest in treatment expansion and increase the availability of low-threshold harm reduction services; otherwise, I fear the country’s addiction and drug overdose crisis will continue to get worse.

— Dr. Brian Hurley, president-elect of the American Society of Addiction Medicine’s Board of Directors, Los Angeles

. @POTUS wants to expand #harmreduction programs as part of strategy to reduce #drug #overdose deaths, but idea faces complicated reality on the ground as programs operate on fringes of legality, w/ scant budgets, & fierce opposition. @renurayasam @khnews https://t.co/qbSBtMkn38 pic.twitter.com/pYV8mB1nEc

— Deni Carise (@DeniCarise) June 21, 2022

— Deni Carise, Philadelphia

How to Beat the Opioid Epidemic

Do you want to control the scourge of fentanyl in America (“The Blackfeet Nation’s Plight Underscores the Fentanyl Crisis on Reservations,” May 25)? There are two options:

1. Distribute the drug solely by the government, ensuring its purity, proper dosage, and safe setting for the user, providing real-time overdose care and optional consulting for anyone who wants to quit, all for free.

2. Make some nonaddictive antidepressants (generally SSRIs, or selective serotonin reuptake inhibitors) less restrictive. You know, how health care in your country is expensive, visiting a psychiatrist or psychologist, refilling, blah-blah. I know, the nation who can’t agree on banning AR-15s from being sold to 18-year-olds won’t agree on this.

What if you let people have some SSRIs over the counter? These are not recreational, are generally safe (way safer than opioids), and do help with anxiety. Hey, what drives people to opioids? Aren’t anxiety levels at their highest all across the globe?

Also, the drugmaker mafia will support it.

Just as we have embraced over-the-counter drugs for widespread diseases like colds, we might adopt the same concept in mental health care as well. Anxiety is becoming more widespread compared with colds (my gut says).

— Alireza Mohamadi, Tehran, Iran

Fentanyl spreads west, including to the Blackfeet Nation.https://t.co/ZrykuZQ06c

— Keith Humphreys (@KeithNHumphreys) May 25, 2022

— Keith Humphreys, Stanford, California

Dust-Up Over Pollution Coverage

This article appears written from a lopsided viewpoint (“Some People in This Montana Mining Town Worry About the Dust Next Door,” June 8).

Very few cities pass the World Health Organization’s unrealistic threshold of 5 micrograms per cubic meter, and why would you get a mechanical engineer to provide input on environmental issues? Why, because the real environmental specialist said this was not an issue? As for dust on a picnic table, that is a horrible example. We get dust on our picnic table anytime the wind blows, and we don’t live by a mine. Maybe WHO should recommend that the wind stop blowing because it causes dust.

From the WHO’s website: “In 2019, 99% of the world population was living in places where the WHO air quality guidelines levels were not met.” This is not a reasonable standard and was selected by bureaucrats that are out of touch with life and the real world. All of the real information and statistics say there is not a problem, but your article makes a problem where one does not exist and people who are not willing to fact-check you will think there is a problem. All these people with health issues are unfortunate and that’s very sad, but people everywhere have sad health issues. Stick to the scientific facts and real monitoring numbers, and don’t drag “The Sky Is Falling” people into news articles. Facts matter!

— John Utaz, Salt Lake City

Cultivating an interest in ‘dusts’ at the moment and this article includes extractive industries/ mining. https://t.co/JsXCA7rxkD

— Cat Rushmore (@CatRushmore) June 9, 2022

— Cat Rushmore, Glasgow, Scotland

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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El nuevo movimiento MADD: padres toman acción contra las muertes por drogas

Siguiendo el modelo de Mothers Against Drunk Driving, que generó un movimiento en la década de 1980, organizaciones como Victims of Illicit Drugs y Alexander Neville Foundation buscan aumentar la conciencia pública e influir en las políticas sobre drogas.

La vida tal como la conocía terminó para Matt Capelouto dos días antes de Navidad en 2019, cuando encontró a su hija de 20 años, Alexandra, muerta en la habitación de su infancia en Temecula, California. La ira superó al dolor cuando las autoridades dictaminaron que su muerte fue accidental.

La estudiante de segundo año de la universidad, que estaba pasando las vacaciones en casa, había tomado media pastilla que compró a un dealer a través de Snapchat. Resultó ser fentanilo, el poderoso opioide sintético que ayudó a que las muertes por sobredosis de drogas en los Estados Unidos ascendieran a más de 100,000 el año pasado.

“La envenenaron y a la persona que lo hizo no iba a pasarle nada”, dijo. “No pude soportarlo”.

Capelouto, quien se describe a sí mismo como políticamente moderado, dijo que la experiencia lo volvió cínico sobre la renuencia de California a imponer sentencias severas por delitos de drogas.

Así que el padre suburbano que una vez dedicó todo su tiempo a administrar su imprenta y criar a sus cuatro hijas, lanzó un grupo llamado Drug Induced Homicide y viajó a Sacramento en abril para cabildear por una legislación conocida como “Alexandra’s Law”.

El proyecto de ley habría facilitado que los fiscales de California condenaran a los vendedores de drogas letales por cargos de homicidio.

La organización de Capelouto es parte de un movimiento nacional de padres que se convirtieron en activistas, que luchan contra la cada vez más mortal crisis de las drogas, y están desafiando la doctrina de California de que las drogas deben ser tratadas como un problema de salud en lugar de ser procesadas por el sistema de justicia penal.

Siguiendo el modelo de Mothers Against Drunk Driving, que generó un movimiento en la década de 1980, organizaciones como Victims of Illicit Drugs y Alexander Neville Foundation buscan aumentar la conciencia pública e influir en las políticas sobre drogas. Un grupo, Mothers Against Drug Deaths, rinde homenaje a MADD tomando prestadas sus siglas.

Estos grupos presionan a los legisladores estatales para que impongan sanciones más estrictas a los distribuidores y a las empresas de tecnología de cabildeo para permitir que los padres controlen las comunicaciones de sus hijos en las redes sociales.

Colocan cartels en las calles que culpan a los políticos por la crisis de las drogas y organizan protestas de “muerte” contra los mercados de drogas al aire libre en Venice Beach, en Los Ángeles y el vecindario Tenderloin de San Francisco.

“Este problema se resolverá con los esfuerzos de base de las familias afectadas”, dijo Ed Ternan, quien lidera el grupo Song for Charlie, con sede en Pasadena, que se enfoca en educar a los jóvenes sobre los peligros de las píldoras falsificadas.

Muchos padres se movilizaron después de una ola de muertes que comenzó en 2019. A menudo, se trataba de estudiantes de secundaria o universitarios que pensaban que estaban tomando OxyContin o Xanax comprados en las redes sociales, pero en realidad estaban tomando pastillas que contenían fentanilo.

La droga llegó por primera vez a la costa este hace casi una década, en gran parte a través del suministro de heroína, pero desde entonces los cárteles mexicanos han introducido productos farmacéuticos falsificados mezclados con el polvo altamente adictivo en California y Arizona para atraer nuevos clientes.

En muchos casos, las víctimas de sobredosis son estudiantes sobresalientes o atletas estrella de los suburbios, lo que da lugar a un ejército de padres educados y comprometidos que desafían el silencio y el estigma que rodea a las muertes por drogas.

Ternan no sabía casi nada sobre el fentanilo cuando su hijo de 22 años, Charlie, murió en el dormitorio de la casa de su fraternidad en la Universidad de Santa Clara unas semanas antes de que se graduara en la primavera de 2020.

Los familiares determinaron a partir de los mensajes en el teléfono de Charlie que había tenido la intención de comprar Percocet, un analgésico recetado que había tomado después de una cirugía de espalda dos años antes. Los socorristas dijeron que el estudiante universitario de 6 pies y 2 pulgadas, y 235 libras, murió media hora después de tomar una píldora falsificada.

Ternan descubrió una serie de muertes similares en otras comunidades de Silicon Valley. En 2021, 106 personas murieron por sobredosis de fentanilo en el condado de Santa Clara, frente a las 11 de 2018. Las muertes incluían a un estudiante de segundo año de la Universidad de Stanford y a una niña de 12 años en San José.

Con la ayuda de dos ejecutivos de Google que perdieron a sus hijos a causa de las píldoras mezcladas con fentanilo, Ternan convenció a Facebook, Instagram, TikTok, YouTube y otras plataformas de redes sociales para que donaran espacios publicitarios para mensajes de advertencia sobre medicamentos falsificados.

La presión de los grupos de padres también ha impulsado a Snapchat, con sede en Santa Mónica, a implementar herramientas para detectar la venta de drogas y restricciones diseñadas para dificultar que los traficantes se dirijan a los menores.

Desde los primeros días de la epidemia de opioides, las familias de las personas que se enfrentan a la adicción y de las que han muerto por sobredosis se han apoyado mutuamente en los sótanos de las iglesias y en las plataformas en línea desde Florida hasta Oregon. Ahora, las organizaciones familiares que surgieron de la crisis del fentanilo en California han comenzado a cooperar entre sí.

Recientemente se formó una red de padres y otros activistas que se hace llamar la California Peace Coalition liderada por Michael Shellenberger, un autor y activista de Berkeley que se postula para gobernador como independiente.

Una crítica de las políticas progresistas de California es Jacqui Berlinn, una empleada de procesamiento legal en East Bay que inició Mothers Against Drug Deaths, un nombre que eligió como homenaje a los logros de la fundadora de Mothers Against Drunk Driving, Candace Lightner, ama de casa de Fair Oaks cuya hija de 13 años fue asesinada en 1980 por un conductor ebrio.

El hijo de Berlinn, Corey, de 30 años, ha consumido heroína y fentanilo durante siete años en las calles de San Francisco. “Mi hijo no es basura”, dijo Berlinn. “Se merece recuperar su vida”.

Berlinn cree que la decisión de la ciudad de no acusar a los traficantes ha permitido que florezcan los mercados de narcóticos al aire libre en ciertos vecindarios y el consumo de drogas, en lugar de alentar a las personas que enfrentan adicciones a buscar ayuda.

En abril, el grupo de Berlinn gastó $25,000 para erigir una valla publicitaria en el exclusivo distrito comercial de Union Square. Sobre una resplandeciente toma nocturna del puente Golden Gate, el letrero dice: “Famosos en todo el mundo por nuestros cerebros, belleza y, ahora, fentanilo sucio muy barato”.

Este mes, el grupo instaló un letrero a lo largo de la Interestatal 80 en dirección a Sacramento que apunta al gobernador demócrata Gavin Newsom.

Reproduciendo la señalización utilizada en los parques nacionales, la cartel presenta un saludo de “Bienvenido al Campamento Fentanyl” contra una toma de un campamento para personas sin hogar. El grupo dijo que una valla publicitaria móvil también rodeará el Capitolio estatal por un período no revelado.

Mothers Against Drug Deaths está pidiendo más opciones y fondos para el tratamiento de drogas y más arrestos de traficantes. Este último marcaría un giro brusco del evangelio de la “reducción de daños”, un enfoque de salud pública adoptado por funcionarios estatales y locales que considera que la abstención es poco realista.

En cambio, esta estrategia exige ayudar a las personas que enfrentan adicciones a mantenerse seguras a través de intercambios de agujas y naloxona, un fármaco para revertir la sobredosis que ha salvado miles de vidas.

Los fiscales progresistas Chesa Boudin en San Francisco y George Gascón en Los Ángeles han evitado encarcelar a los traficantes callejeros, a lo que llaman un juego sin sentido que castiga a las minorías pobres.

Los legisladores de California temen repetir los errores de la era de la guerra contra las drogas y han bloqueado una serie de proyectos de ley que endurecerían las sanciones por la venta de fentanilo. Dicen que la legislación lograría poco además de llenar las cárceles y prisiones del estado.

“Podemos encarcelar a la gente por mil años, y no evitará que la gente consuma drogas, y no evitará que mueran”, dijo el senador estatal Scott Wiener (demócrata de San Francisco). “Lo sabemos por experiencia”.

Algunos padres están de acuerdo. Después de ver a su hijo entrar y salir del sistema de justicia penal por cargos menores de drogas en la década de 1990, Gretchen Burns Bergman se convenció de que acusar a las personas por delitos menores de drogas, como la posesión, era contraproducente.

En 1999, la productora de desfiles de moda de San Diego inició A New Path, que ha abogado por la legalización de la marihuana y el fin de la ley de los “tres strikes” de California. Una década más tarde, formó Moms United to End the War on Drugs, una coalición nacional. Hoy, sus dos hijos se han recuperado de la adicción a la heroína con la ayuda de un “apoyo compasivo” y trabajan como consejeros de drogas, dijo.

“He estado en esto el tiempo suficiente para ver el movimiento pendular”, dijo Burns Bergman sobre las opiniones cambiantes del público sobre la aplicación de la ley.

En diciembre, Brandon McDowell, de 22 años, de Riverside, fue arrestado y acusado de vender la tableta que mató a la hija de Matt Capelouto. McDowell fue acusado de distribuir fentanilo con resultado en muerte, lo que conlleva una sentencia mínima obligatoria de 20 años en una prisión federal.

Aunque Alexandra’s Law no logró salir del comité, Capelouto señaló que años se dedicaron años de cabildeo hasta que se aprobaron leyes más estrictas sobre conducir en estado de ebriedad. Prometió no renunciar al proyecto de ley que lleva el nombre de su hija, que escribía poesía y amaba a David Bowie.

“Voy a estar de nuevo frente a ellos”, dijo, “Cada año”.

Esta historia fue producida por KHN, que publica California Healthline, un servicio editorialmente independiente de la 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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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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This story can be republished for free (details).