Kansas becomes the 48th state to allow these birth certificate changes. A lawsuit filed by three transgender Kansas residents and the Kansas Statewide Transgender Education Project alleged that state policy against changing the gender on birth records violated the equal protection and due process clauses of the U.S. Constitution.
Today’s early morning highlights from the major news organizations.
Ten residents slipped away from their retirement community one Sunday afternoon for a covert meeting in a grocery store cafe. They aimed to answer a taboo question: When they feel they have lived long enough, how can they carry out their own swift and peaceful death?
The seniors, who live in independent apartments at a high-end senior community near Philadelphia, showed no obvious signs of depression. They’re in their 70s and 80s and say they don’t intend to end their lives soon. But they say they want the option to take “preemptive action” before their health declines in their later years, particularly due to dementia.
More seniors are weighing the possibility of suicide, experts say, as the baby boomer generation — known for valuing autonomy and self-determination — reaches older age at a time when modern medicine can keep human bodies alive far longer than ever before.
The group gathered a few months ago to meet with Dena Davis, a bioethics professor at Lehigh University who defends “rational suicide” — the idea that suicide can be a well-reasoned decision, not a result of emotional or psychological problems. Davis, 72, has been vocal about her desire to end her life rather than experience a slow decline due to dementia, as her mother did.
The concept of rational suicide is highly controversial; it runs counter to many societal norms, religious and moral convictions and the efforts of suicide prevention workers who contend that every life is worth saving.
“The concern that I have at a social level is if we all agree that killing yourself is an acceptable, appropriate way to go, then there becomes a social norm around that, and it becomes easier to do, more common,” said Dr. Yeates Conwell, a psychiatrist specializing in geriatrics at the University of Rochester and a leading expert in elderly suicide. That’s particularly dangerous with older adults because of widespread ageist attitudes, he said.
As a society, we have a responsibility to care for people as they age, Conwell argued. Promoting rational suicide “creates the risk of a sense of obligation for older people to use that method rather than advocate for better care that addresses their concerns in other ways.”
A Kaiser Health News investigation in April found that older Americans — a few hundred per year, at least — are killing themselves while living in or transitioning to long-term care. Many cases KHN reviewed involved depression or mental illness. What’s not clear is how many of these suicides involve clear-minded people exercising what Davis would call a rational choice.
Suicide prevention experts contend that while it’s normal to think about death as we age, suicidal ideation is a sign that people need help. They argue that all suicides should be avoided by addressing mental health and helping seniors live a rich and fulfilling life.
But to Lois, the 86-year-old woman who organized the meeting outside Philadelphia, suicides by older Americans are not all tragedies. Lois, a widow with no children, said she would rather end her own life than deteriorate slowly over seven years, as her mother did after she broke a hip at age 90. (Lois asked to be referred to by only her middle name so she would not be identified, given the sensitive topic.) In her eight years at her retirement community, Lois has encountered other residents who feel similarly about suicide. But because of stigma, she said, the conversations are usually kept quiet.
Lois insisted her group meet off-campus at Wegmans because of the “subversive” nature of the discussion. Supporting rational suicide, she said, clashes with the ethos of their continuing care retirement community, where seniors transition from independent apartments to assisted living to a nursing home as they age.
Seniors pay six figures to move into the bucolic campus, which includes an indoor heated pool, a concert hall and many acres of wooded trails. They are guaranteed housing, medical care, companionship and comfort for the rest of their lives.
“We are sabotaging that,” Lois said of her group. “We are saying, thank you very much, but that’s not what we’re looking for.”
Carolyn, a 72-year-old member of the group who asked that her last name be withheld, said they live in a “fabulous place” where residents enjoy “a lot of agency.” But she and her 88-year-old husband also want the freedom to determine how they die.
A retired nurse, Carolyn said her views have been shaped in part by her experience in the HIV/AIDS epidemic. In the 1990s, she created a program that sent hospice volunteers to work with people dying of AIDS, which at the time was a death sentence.
She said many of the men kept a stockpile of lethal drugs on a dresser or bedside table. They would tell her, “When I’m ready, that’s what I’m going to do.” But as their condition grew worse, she said, they became too confused to follow through.
“I just saw so many people who were planning to have that quiet, peaceful ending when it came, and it just never came. The pills just got scattered. They lost the moment” when they had the wherewithal to end their own lives, she said.
Carolyn emphasized that she and her husband do not feel suicidal, nor do they have a specific plan to die on a certain date. But she said that while she still has the ability, she wants to procure a lethal medication that would offer the option for a peaceful end in the future.
“Ideally, I would have in hand the pill, or the liquid or the injection,” she said. She said she’s embarrassed that, as a former nurse, she doesn’t know which medication to use or how to get it.
Maine recently became the ninth state to allow medical aid in dying, which permits some patients to get a doctor’s prescription for lethal drugs. That method is restricted, however, to people with a terminal condition who are mentally competent and expected to die within six months.
Patients who aren’t eligible for those laws would have to go to an “underground practice” to get lethal medication, said Dr. Timothy Quill, a palliative care physician at the University of Rochester School of Medicine. Quill became famous in the 1990s for publicly admitting that he gave a 45-year-old patient with leukemia sleeping pills so she could end her life. He said he has done so with only one other patient.
Quill said he considers suicide one option he may choose as he ages. “I would probably be a classic [case] — I’m used to being in charge of my life.” He said he might be able to adapt to a situation in which he became entirely dependent on the care of others, “but I’d like to be able to make that be a choice as opposed to a necessity.”
Suicide could be as rational a choice as a patient’s decision to end dialysis, after which the patient typically dies within two weeks, he said. But when patients bring up suicide, he said, it should launch a serious conversation about what would make their life feel meaningful and their preferences for medical care at the end of life.
Clinicians have little training on how to handle conversations about rational suicide, said Dr. Meera Balasubramaniam, a geriatric psychiatrist at the New York University School of Medicine who has written about the topic. She said her views are “evolving” on whether suicide by older adults who are not terminally ill can be a rational choice.
“One school of thought is that even mentioning the idea that this could be rational is an ageist concept,” she said. “It’s an important point to consider. But ignoring it and not talking about it also does not do our patients a favor, who are already talking about this or discussing this among themselves.”
In her discussions with patients, she said, she explores their fears about aging and dying and tries to offer hope and affirm the value of their lives.
These conversations matter because “the balance between the wish to die and the wish to live is a dynamic one that shifts frequently, moment to moment, week to week,” said Conwell, the suicide prevention expert.
Carolyn, who has three children and four grandchildren, said conversations about suicide are often kept quiet for fear that involving a family member would implicate them in a crime. The seniors also don’t want to get their retirement community in trouble.
In some of the cases KHN reviewed, nursing homes have faced federal fines of up to tens of thousands of dollars for failing to prevent suicides on-site.
There’s “also just this hush-hush atmosphere of our culture,” said Carolyn. “Not wanting to deal with judgment — of others, or offend someone because they have different beliefs. It makes it hard to have open conversations.”
Carolyn said when she and her neighbors met at the cafe, she felt comforted by breaking the taboo.
“The most wonderful thing about it was being around a table with people that I knew where we could talk about it, and realize that we’re not alone,” Carolyn said. “To share our fears — like if we choose to use something, and it doesn’t quite do the job, and you’re comatose or impaired.”
People who attempt suicide and survive may end up in a psychiatric hospital “with people watching you all the time — the complete opposite of what you’re trying to achieve,” Quill noted.
At the meeting, many questions were practical, Lois said.
“We only get one crack at it,” Lois said. “Everyone wants to know what to do.”
Davis said she did not have practical answers. Her expertise lies in ethics, not the means.
Public opinion research has shown shifting opinions among doctors and the general public about hastening death. Nationally, 72% of Americans believe doctors should be allowed by law to end a terminally ill patient’s life if the patient and his or her family request it, according to a 2018 Gallup poll.
Lois said she’s seeing societal attitudes begin to shift about rational suicide, which she sees as the outgrowth of a movement toward patient autonomy. Davis said she’d like to see polling on how many people share that opinion nationwide.
“It seems to me that there must be an awful lot of people in America who think the way I do,” Davis said. “Our beliefs are not respected. Nobody says, ‘OK, how do we respect and facilitate the beliefs of somebody who wants to commit suicide rather than having dementia?’”
If you or someone you know has talked about contemplating suicide, call the National Suicide Prevention Lifeline at 1-800-273-8255, or use the online Lifeline Crisis Chat, both available 24 hours a day, seven days a week.
People 60 and older can call the Institute on Aging’s 24-hour, toll-free Friendship Line at 800-971-0016. IOA also makes ongoing outreach calls to lonely older adults.
“Medicare for All” — or single-payer health care — is a flagship issue for Democratic presidential candidate and Vermont Sen. Bernie Sanders. So when a conservative group launched an ad campaign claiming such a policy would drive up wait times for medical care, the 2020 candidate responded aggressively.
His point: Some people may wait a bit for care under a new system. But under the current one, many people do not have access to affordable care and the results are sometimes dire.
Still, Sanders’ precision gave us pause.
Namely, he tweeted, “30,000 Americans a year die waiting for health care because of the cost.”
Where did that 30,000 figure come from? How could Sanders — or for that matter, anyone — know how many people died “waiting for health care” specifically “because of the cost”?
We reached out to the Sanders campaign but never heard back.
But multiple experts suggested that the 30,000 figure, while not conjured out of thin air, relies on math that is shaky at best. There isn’t enough evidence, either way, to entirely validate or repudiate this claim.
Sanders’ 30,000 statistic appears to come from a figure used by Physicians for a National Health Program, a doctor-driven nonprofit group that has advocated for years for single-payer health care.
But how did it compute that number? We asked Dr. David Himmelstein, a physician and part-time lecturer at Harvard Medical School, and one of PNHP’s founders.
He said the group looked at the Oregon Health Insurance Experiment, a landmark study in which some state residents had been assigned Medicaid coverage by lottery, and others remained uninsured. One year into that study, researchers found the death rate differed by 0.13 percentage points between those who received insurance and those who did not.
But, per the researchers’ analysis, that difference was not statistically significant. (That’s important and something we’ll come back to.)
Himmelstein said the margin of 0.13 percentage points suggests that for every 769 people to lack health coverage, one will die. Looking at the current American uninsured population — about 27 million lack coverage —should put you close to 30,000.
Generally, experts said, it’s likely that cost barriers prevent thousands of Americans from accessing lifesaving medical care.
But “the particular math here seems a bit questionable” in arriving at 30,000, said Dr. Benjamin Sommers, a physician and health economist at the Harvard T.H. Chan School of Public Health.
The problem lies in extrapolating so much from the Oregon Health Insurance Experiment. While it yielded important findings, the death rate differential in particular is not statistically significant, so it cannot be applied so broadly, he said. The study wasn’t big enough to generate sufficient evidence spelling out the link between insurance coverage and mortality.
Other research makes clear that such a link exists. Sommers’ own work, for instance, looked at the impact of Massachusetts’ 2006 health reform law — the model for the Affordable Care Act, which brought the state to near-universal coverage.
That expansion was associated with a significant drop in mortality. For every 830 adults to gain coverage, one death was prevented.
But differences nationally in both population and health care generally still mean it’s difficult to apply this statistic to the rest of the country — and, namely, to the remaining 27 million uninsured.
So is 30,000 right or wrong?
We don’t know.
“My guess is that one, [Sanders] is right that thousands of people die because they remain uninsured, despite the ACA; but two, the 30,000 number may be too high,” said Stan Dorn, a senior fellow at Families USA, a left-leaning health policy advocacy group.
Going Beyond Insurance
There’s one other issue: More often than not, people are uninsured because they can’t afford to buy coverage. In turn, that often means they can’t afford health care and suffer dire consequences.
But it isn’t a one-to-one substitution.
For instance, there are healthy people who lack insurance but may not need much medical care in that particular year, or may simply choose not to buy it.
And, on the other hand, some people have coverage that isn’t robust enough to make lifesaving treatments affordable.
So, if you want to measure how many Americans do die “waiting for health care because of the cost,” you’d have to look beyond just the question of having insurance.
On its face, Sanders’ claim speaks to an important, undisputed policy concern — thousands of Americans die because they cannot afford their health care.
But his “30,000 people” talking point relies on weak math, and it lacks meaningful support either way. It could be true. But it also could easily not be.
“The senator’s comment looks like a reasonable attempt to use prior research,” Sommers said. But “he’s overstating the precision and confidence we can have in that number.”
Sanders’ argument speaks to something more broadly true but neglects important details of the Oregon Health Insurance Experiment’s limitations. We rate it Half True.
Ann Manganello survives entirely off her Social Security stipend: $1,391 a month.
That doesn’t amount to much in the pricey desert enclave of Palm Springs, Calif. — especially for someone who contends with a host of expensive medical problems, including a blood vessel disorder, complications from a recent stroke and frequent bouts of colitis.
“Right now, I don’t really have the money to do much. I just stay here and that’s it,” Manganello said with a sigh, sad at the thought of being stuck in her apartment.
Because she is 71 and has a low income, Manganello qualifies for Medi-Cal, the state’s Medicaid program for disadvantaged people, as well as Medicare, the public insurance program for people 65 and older.
But there’s a catch: Her monthly Social Security check puts her slightly above the income level for free care under Medi-Cal. So, she reduces the amount of income counted for Medi-Cal eligibility by buying a dental insurance policy she doesn’t really need, just so she can qualify for the free coverage and avoid a $672 monthly deductible.
Things are expected to change next year for Manganello and others in similar situations. In the state budget for 2019-20, legislators approved $62.4 million to help about 25,000 older people and those with disabilities get free Medi-Cal. Gov. Gavin Newsom must sign the budget by June 30.
That’s one of several major investments the $215 billion budget makes in Medi-Cal enrollment and services. About 13 million Californians — or about a third of the state’s population — have Medi-Cal.
The spending plan also includes money to restore medical benefits that were cut 10 years ago during the recession, such as podiatry and speech therapy. It also provides full Medi-Cal coverage to low-income young adults ages 19 through 25 who are in the country illegally. That will make California the first state in the nation to offer full Medicaid benefits to unauthorized immigrant adults.
Plus there’s $30 million for outreach and enrollment and $769.5 million to boost the amount Medi-Cal pays participating doctors and dentists.
For Manganello, who worked as a manager for a signage shop in Buffalo, N.Y., before moving west, qualifying for free Medi-Cal would make a tangible difference in her life.
“I could cancel that extra insurance and buy myself a medical alert bracelet. I would also have some money to maybe pay off some other medical bills,” she said. “It would help with groceries, things like Depends. And maybe I could go out to lunch once in a while.”
The Medi-Cal expansions in the budget represent another radical departure by California from the federal government on health care and immigration. In addition to cracking down on illegal immigration, the Trump administration is pushing policies, such as work requirements for Medicaid enrollees, that often lead to reductions in enrollment.
The budget measures also bring California a step closer to Newsom’s goal of achieving universal health care coverage. The state’s estimated 1.8 million unauthorized immigrants, for example, make up roughly 60% of the state’s remaining uninsured residents.
“It seems like what has occurred in California this year is a very conscious, systematic and well-designed effort to close gaps” in coverage, said Judy Solomon, a senior fellow at the Center on Budget and Policy Priorities.
Many other states face similar coverage gaps but few can afford to address them, Solomon said.
Most adults who don’t have a disability and are under 65 are eligible for free Medi-Cal with incomes up to 138% of the federal poverty level, or about $17,200 for an individual.
But adults in Medi-Cal’s Aged and Disabled Program have to meet stricter income requirements — up to 122% of the poverty level, or just under $15,240 a year for an individual.
If, like Manganello, they make slightly more than that, they must pay a certain amount of their health costs — essentially, a deductible — before Medi-Cal coverage kicks in. That can translate into hundreds of dollars or more per month.
Linda Nguy, a policy advocate at the Western Center on Law & Poverty, said that many people are simply skipping medical care because they can’t afford the deductible.
“We call this the senior penalty, because basically you’re being penalized with a stricter eligibility limit based fully on your age or disability,” said Amber Christ, an attorney with Justice in Aging, a nonprofit advocacy group focused on senior poverty.
Many states that expanded their Medicaid programs under the Affordable Care Act also have this disparity, Christ said. The 2019-20 California budget would end it by raising the income eligibility threshold for that group to 138% of the poverty level.
During the Great Recession, California, like many other states, cut several Medicaid benefits that aren’t required by the federal government.
Starting Jan. 1, Medi-Cal will restore five areas of coverage: audiology, optical services, podiatry, incontinence supplies and speech therapy.
“People of all ages wear glasses, so this can really benefit anyone,” Nguy said. “But things like podiatry, audiology, speech therapy are probably of most benefit to people with chronic conditions.”
The new budget includes $17.4 million for these services, which could disappear again in 2022 unless lawmakers decide to extend them.
Optional benefits are usually the first to go in bad economic times, and bringing them back can take years. Full dental benefits, also cut during the recession, were restored for adults in Medi-Cal last year.
Lawmakers allocated $98 million to offer free health coverage for unauthorized young immigrant adults who meet the income requirements, starting next year. Of this, $74.3 million will come from the state, while the rest will come from funds the federal government provides for labor and delivery and emergency care only.
About 90,000 young adults are expected to become eligible in the first year.
Covering young adults became the most controversial health care issue in this year’s budget. Republicans criticized the effort, arguing that Medi-Cal should be fixed before it is expanded.
“Every day, my district offices get calls from my constituents who are unable to see a doctor, even though they are technically covered by Medi-Cal, because so few doctors in my district are able to take the low reimbursement rates that Medi-Cal provides,” state Assemblyman Jay Obernolte (R-Big Bear Lake) said before the Assembly’s budget vote on June 13.
In 2016, California started offering full Medi-Cal benefits to unauthorized immigrant children. The state’s current-year budget allocates $365.2 million to fund that coverage. In February 2019, 127,845 kids were enrolled in the program.
Anyone who has tried to “shop” for hospital services knows one thing: It’s hard to get prices.
President Donald Trump on Monday signed an executive order he said would make it easier.
The order directs agencies to draw up rules requiring hospitals and insurers to make public more information on the negotiated prices they hammer out in contract negotiations. Also, hospitals and insurers would have to give estimates to patients on out-of-pocket costs before they go in for nonemergency medical care.
The move, which officials said will help address skyrocketing health care costs, comes amid other efforts by the administration to elicit more price transparency for medical care and initiatives by Congress to limit so-called surprise bills. These are the often-expensive bills consumers get when they unwittingly receive care that is not covered by their insurers.
“This will put American patients in control and address fundamental drivers of health care costs in a way no president has done before,” said Health and Human Services Secretary Alex Azar during a press briefing on Monday.
The proposal is likely to run into opposition from some hospitals and insurers who say disclosing negotiated rates could instead drive up costs.
Just how useful the effort will prove for consumers is unclear.
Much depends on how the administration writes the rules governing what information must be provided, such as whether it will include hospital-specific prices, regional averages or other measures. While the administration calls for a “consumer-friendly” format, it’s not clear how such a massive amount of data — potentially negotiated price information from thousands of hospitals and insurers for tens of thousands of services — will be presented to consumers.
“It’s well intended, but may grossly overestimate the ability of the average patient to decipher this information overload,” said Dan Ward, a vice president at Waystar, a health care payments service.
So, does this new development advance efforts to better arm consumers with pricing information? Some key point to consider:
Q: What does the order do?
It may expand on price information consumers receive.
The order directs agencies to develop rules to require hospitals and insurers to provide information “based on negotiated rates” to the public.
Currently, such rates are hard to get, even for patients, until after medical care is provided. That’s when insured patients get an “explanation of benefits (EOBs),” which shows how much the hospital charged, how much of a discount their insurer received and the amount a patient may owe.
In addition to consumers being unable to get price information upfront in many cases, hospital list prices and negotiated discount rates vary widely by hospital and insurer, even in a region. Uninsured patients often are charged the full amounts.
“People are sick and tired of hospitals playing these games with prices,” said George Nation, a business professor at Lehigh University who studies hospital contract law. “That’s what’s driving all of this.”
Some insurers and hospitals do provide online tools or apps that can help individual patients estimate out-of-pocket costs for a service or procedure ahead of time, but research shows few patients use such tools. Also, many medical services are needed without much notice — think of a heart attack or a broken leg — so shopping simply isn’t possible.
Administration officials say they want patients to have access to more information, including “advance EOBs” outlining anticipated costs before patients get nonemergency medical care. In theory, that would allow consumers to shop around for lower cost care.
Q: Isn’t this information already available?
Not exactly. In January, new rules took effect under the Affordable Care Act that require hospitals to post online their “list prices,” which hospitals set themselves and have little relation to actual costs or what insurers actually pay.
What resulted are often confusing spreadsheets that contain thousands of a la carte charges — ranging from the price of medicines and sutures to room costs, among other things — that patients have to piece together if they can to estimate their total bill. Also, those list charges don’t reflect the discounted rates insurers have negotiated, so they are of little use to insured patients who might want to compare prices hospital to hospital.
The information that would result from Trump’s executive order would provide more detail based on negotiated, discounted rates.
A senior administration official at the press briefing said details about whether the rates would be aggregated or relate to individual hospitals would be spelled out only when the administration puts forward proposed rules to implement the order later this year. It also is unclear how the administration would enforce the rules.
Another limitation: The order applies only to hospitals and the medical staff they employ. Many hospitals, however, are staffed by doctors who are not directly employed, or laboratories that are also separate. That means negotiated prices for services provided by such laboratories or physicians would not have to be disclosed.
Q: How could consumers use this information?
In theory, consumers could get information allowing them to compare prices for, say, a hip replacement or knee surgery in advance.
But that could prove difficult if the rates were not fairly hospital-specific, or if they were not lumped in with all the care needed for a specific procedure or surgery.
“They could take the top 20 common procedures the hospital does, for example, and put negotiated prices on them,” said Nation at Lehigh. “It makes sense to do an average for that particular hospital, so I can see how much it’s going to cost to have my knee replaced at St. Joe’s versus St. Anne’s.”
Having advance notice of out-of-pocket costs could also help patients who have high-deductible plans.
“Patients are increasingly subject to insurance deductibles and other forms of substantial cost sharing. For a subset of so-called shoppable services, patients would benefit from price estimates in advance that allow them to compare options and plan financially for their care,” said John Rother, president and CEO at the advocacy group National Coalition on Health Care.
Q: Will this push consumers to shop for health care?
The short answer is maybe. Right now, it’s difficult, even with some of the tools available, said Lovisa Gustafsson, assistant vice president at the Commonwealth Fund, which has looked at whether patients use existing tools or the list price information hospitals must post online.
“The evidence to date shows patients aren’t necessarily the best shoppers, but we haven’t given them the best tools to be shoppers,” she said.
Posting negotiated rates might be a step forward, she said, but only if it is easily understandable.
It’s possible that insurers, physician offices, consumer groups or online businesses may find ways to help direct patients to the most cost-effective locations for surgeries, tests or other procedures based on the information.
“Institutions like Consumer Reports or Consumer Checkbook could do some kind of high-level comparison between facilities or doctors, giving some general information that might be useful for consumers,” said Tim Jost, a professor emeritus at the Washington and Lee University School of Law.
But some hospitals and insurers maintain that disclosing specific rates could backfire.
Hospitals charging lower rates, for example, might raise them if they see competitors are getting higher reimbursement from insurers, they say. Insurers say they might be hampered in their ability to negotiate if rivals all know what they each pay.
“We also agree that patients should have accurate, real-time information about costs so they can make the best, most informed decisions about their care,” said a statement from lobbying group America’s Health Insurance Plans. “But publicly disclosing competitively negotiated, proprietary rates will reduce competition and push prices higher — not lower — for consumers, patients, and taxpayers.”
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The cost of health care looms as a major issue going into the 2020 campaign. But even as Democratic presidential candidates debate ways to bring down prices and expand insurance to more Americans, Democrats and Republicans in Congress are trying to pass legislation to address the price of prescription drugs and put an end to “surprise” out-of-network medical bills.
Chris Jennings and Lanhee Chen know about both. Jennings, president of Jennings Policy Strategies, has been a health adviser to Presidents Bill Clinton and Barack Obama. Lanhee Chen is a research fellow at the Hoover Institution and a director in the public policy program at Stanford University. He has advised Republican presidential candidates Mitt Romney, Marco Rubio and others.
This week’s panelists for KHN’s “What the Health?” — recorded at the Aspen Ideas: Health festival — are Julie Rovner of Kaiser Health News, Joanne Kenen of Politico and Margot Sanger-Katz of The New York Times.
Among the takeaways from this week’s podcast:
- The term “health care costs” means different things to different people. For most of the public, it refers to the amount they must pay out-of-pocket for premiums, deductibles and services. For policymakers, it often means the total amount the U.S. spends on the health care system. That often creates a disconnect.
- Even small changes to the way drugs are priced and ending surprise medical bills might end up satisfying many members of the public, although those adjustments might have a minimal effect on overall health spending.
- Republicans are as divided as Democrats on health care. That is the main reason Republicans did not repeal the Affordable Care Act in 2017 and why there has been no major Republican replacement proposal since then.
- Many of the Democrats running for president, meanwhile, continue to advocate for a “Medicare for All” program run by the government, although many are hedging their bets by supporting other, less sweeping proposals to expand coverage, as well.
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Opinion writers weigh in on these health topics and others.
Universal Health Services said read-only versions were available during the time, but declined to say how many patients’ records were affected. Other technology news: A period-tracking app might hold clues to fertility.
The closings continue a trend for the state that has lost 30 nursing homes in the past 18 months. The attorney general is investigating the recent closings that are forcing hundreds of vulnerable Medicaid patients to be uprooted. News on nursing homes comes from Connecticut, Ohio and Michigan, as well.
The Oregonian/OregonLive launched an investigation into the Oregon Health Authority’s management of moving patients out of specialized care. Chris Bouneff, director of Oregon’s branch of the National Alliance on Mental Illness, said the newsroom’s findings are “disturbing.” “We don’t have many others who look after us,” Bouneff said of people with severe mental illness. “And if that state agency can’t do it, and it didn’t do it in this instance, who can we trust?”
The rounds from that style of weapon are three times faster and strike with more than twice the force of other bullets. “Organs aren’t just going to tear or have bruises on them, they’re going to be, parts of them are going to be destroyed,” says Cynthia Bir. In other public health news: gene-edited babies, alcohol, vitiligo, the cautious generation, cancer, CBD, and more.
“It is long past time to recognize and apologize for our role in the discrimination and trauma caused by our profession and say, ‘We are sorry,'” said American Psychoanalytic Association President Dr. Lee Jaffe. Other news on the LGBTQ community focuses on transgender health and safety.
“They’re grudgingly implementing the policy — and I think ‘grudgingly’ is the operative word,” said state Sen. John McCollister. News on Medicaid is also from Georgia.
While experts say a prominent legal expert’s warnings over the constitutionality of legislation address surprise medical bills are weak, it is still unlikely that any new regulations will skate through without being challenged in court.
The federal government now estimates that a record 50 million rural Americans live in what it calls “health care shortage areas,” where the number of hospitals, family doctors, surgeons and paramedics has declined to 20-year lows. A look at a pop-up clinic in Tennessee shows just how bad that reality is for the people living it.
The judge in the battle over the last-remaining abortion clinic in Missouri had given the state a deadline to make a decision over the license, saying officials couldn’t just allow it to lapse.
Today’s early morning highlights from the major news organizations.
A federal regulation demands that certain health care organizations provide patients who have limited English skills a written notice of free translation services.
But the Trump administration wants to ease those regulations and also no longer require that directions be given to patients on how they can report discrimination they experience.
The changes could save $3.16 billion over five years for the health care industry, according to the administration.
The proposal would not change the government’s requirements that insurers and medical facilities provide foreign language translators and interpreters for non-English speakers.
The government acknowledged in the proposal that the change would lead to fewer people with limited English skills accessing health care and fewer reports of discrimination. But it also questioned the need for these notices, pointing out that in some areas health organizations spend money to accommodate a small contingent of language speakers. For example, notices in Wyoming must account for the 40 Gujarati speakers — a language of India — in the state.
In all, the government said, the impact of doing away with these requirements would be “negligible.”
“I haven’t seen any reason to believe that this will only have a negligible impact,” said Mara Youdelman, managing attorney for the Washington, D.C., office of the National Health Law Program, a civil rights advocacy group. She said it “will likely result in people just not knowing their rights but not accessing care to which they’re eligible.”
Regulations under Section 1557 of the Affordable Care Act require insurers, hospitals and others to include a “tagline” of free translation services for the 15 languages that are most prevalent in a state. Additionally, it requires a nondiscrimination clause and directions on how to file a complaint with the Department of Health and Human Services Office for Civil Rights.
This information must be posted on websites, in physical spaces and in “significant communications” to the patient. But the ambiguity of that phrase prompted health care organizations to post the required information on numerous pieces of material — such as a separate page about language options sent with each Explanation of Benefits statement from an insurer. Together, these efforts cost organizations billions of dollars.
“No one realized exactly what that definition of ‘significant communication’ — how much would be wrapped up in that,” said Katie Keith, a Georgetown University professor who specializes in the ACA.
An estimated 25.9 million people in the United States in 2017 had limited English proficiency, the Census Bureau reported. Patients facing language barriers have a higher risk of health care complications, such as surgical infections and falls, because they may misunderstand a doctor’s orders, make mistakes preparing for procedures or improperly use medications.
In this latest proposal, however, the federal government questions whether the written notices are needed. The majority of enrollees speak English — census data from 2017 showed that 91.5% of people over age 5 spoke only English at home or spoke the language “very well.” In certain states, the proposal claims, every enrollee receives a notice for translation services in a language that only a few dozen people speak in the area.
Other state and federal laws protect the rights of patients with limited language services, the proposed rule says. It also cites evidence of some enrollees not liking the extra forms and being less inclined to open their mail because of them.
“These complaints make us concerned that the Section 1557 Regulation has resulted in ‘cognitive overload,’” the document stated, “such that individuals experience a diminished ability to process information” because of the additional paperwork.
Anecdotal reports cited by the government also point out that the notices did not significantly increase the number of patients using language services and reporting complaints. However, the proposed rule also estimates at least 90% of hospitals and physicians were not complying with the requirements.
Youdelman admitted she does not have concrete data showing that these taglines translate to increased access to services. However, she added, removing them wholesale without a promise to prevent discrimination in a different way is also counterproductive.
“Eliminating taglines is not the correct solution,” Youdelman said. “There is a way to inform folks while being cost-conscious.”
Health insurers and pharmacy benefit managers’ reactions to the proposed change have been tepid. The Pharmaceutical Care Management Association — the trade organization for pharmacy benefit managers — said in an email it “believes all consumers should be informed regarding translation services.” America’s Health Insurance Plans, the trade association for health insurers, said in an email that insurers would make sure consumers get the support they need to understand information — “including providing phone interpreters and written translations for customers who need them.”
Keith said that if the proposal is finalized more patients would not understand information involving their health. Some of these details on insurance and billing documents are already difficult for native English speakers to decipher and could be a challenge for less fluent people.
“Anytime you’re not notifying people of their rights,” Youdelman said, “you disempower them.”
In the 25 years since she snorted her first line of meth at a club in San Francisco, Kim has redefined “normal” so many times. At first, she said, it seemed like meth brought her back to her true self — the person she was before her parents divorced, and before her stepfather moved in.
“I felt normal when I first did it, like, ‘Oh! There I am,’” she said.
Kim is 47 now, and she has been chasing normal her entire adult life. That chase has brought her to some dark places, so she asked us not to use her last name. For a long time, meth, also known as speed, was Kim’s drug of choice.
Then she added heroin to the mix. She tried it for the first time while she was in treatment for meth.
“That put me on a nine-year run of using heroin. And I thought, ‘Oh, heroin’s great. I don’t do speed anymore.’ To me, it saved me from the tweaker-ness,” Kim said, referring to the agitation and paranoia many meth users experience, and how heroin, an opiate, calmed that.
Now, Kim has finished treatment for both drugs.
Kim was part of the previous meth wave, in the ’90s, and now she’s part of a new meth epidemic that has been sweeping through parts of the United States, especially the West. Deaths involving methamphetamine are up. Hospitalizations are up.
Seeking A ‘Synergistic High’
Researchers who have tracked drug use for decades believe the new meth crisis got a kick-start from the opioid epidemic.
“There is absolutely an association,” said Dr. Phillip Coffin, director of substance use research at the San Francisco Department of Public Health.
Across the country, more and more opioid users say they now use meth as well, up from 19% in 2011 to 34% in 2017, according to a study published last year in the journal Drug and Alcohol Dependence. The greatest increases were in the western United States.
That research suggests efforts to get doctors to cut down on writing opioid prescriptions may have driven some users to buy meth on the street instead.
“Methamphetamine served as an opioid substitute, provided a synergistic high, and balanced out the effects of opioids so one could function ‘normally,’” the researchers wrote.
It’s kind of like having a cup of coffee in the morning to wake up, and a glass of wine in the evening to wind down: meth on Monday to get to work, heroin on Friday to ease into the weekend.
Amelia said that’s how her drug use evolved to include meth — she also asked that we use only her first name because she has used illegal substances.
At first, drugs were just a fun thing to do on weekends — ecstasy and cocaine with her friends. Then, on Monday, Amelia went about her workweek.
“I’m a horse trainer, so I worked really hard, but I also partied really hard,” she said.
Then one weekend, when Amelia was feeling kind of hung over from the night before, a friend passed her a pipe. She said it was opium.
“I thought it was like smoking weed or hash, you know? I just thought it was like that,” Amelia said.
She grew to like the opium stuff. Eventually, Amelia met up with her friend’s dealer.
“The woman said, ‘How long have you been doing heroin for?’ and my jaw nearly hit the ground,” Amelia said. “I was just really, honestly shocked. I was like, ‘What? I’ve been doing heroin this whole time?’ I felt really naive, really stupid for not even putting the two together.”
Pretty soon, Amelia started feeling sick around the same time every day. It was withdrawal symptoms, a clear sign she was becoming dependent on the drug. Her weekend smoke became her daily morning smoke. Then it was part of her lunch-break routine.
“I just kind of surrendered to that and decided, ‘Screw it,’” she said. “‘I’ll just keep doing it. I’m obviously still working; I’m fine.’”
A heroin habit is expensive. Amelia was working six days a week to pay for it. Any horses that needed to be ridden, any lessons that needed to be taught, she said ‘yes,’ because she wanted the money.
But bankrolling her heroin habit was exhausting. One day, one of the women she worked with at the horse barn offered her some meth as a pick-me-up.
Meth is comparatively cheap. It became the thing that kept Amelia going so she could earn enough money to buy heroin.
“The heroin was the most expensive part,” she said. “That was $200 a day at one point. And the meth was $150 a week.”
This pattern lasted for three years, until Amelia discovered she was pregnant. As soon as her daughter was born, she entered a residential treatment program in San Francisco, called the Epiphany Center, that would accept her and her baby.
“I was OK with being a drug addict. I was OK with that being my life,” she said. “But I wasn’t OK with having kids and letting that be part of my life.”
Rehab Admissions On The Rise For Users Who Mix Meth, Heroin
Admissions to drug rehabilitation for heroin have remained steady in recent years in San Francisco. But the number of heroin addicts reporting methamphetamine as a secondary substance problem has been rising. In 2014, 14% of heroin users said meth was also a problem. Three years later, 22% said so.
“That is very high,” said Dr. Dan Ciccarone, a physician and professor at the University of California-San Francisco who has been studying heroin for almost 20 years. “That’s alarming and new and intriguing and needs to be explored.”
The speedball — heroin and cocaine — is a classic combination, he said.
“It’s like peanut butter cups, right? Chocolate and peanut butter together,” he said. “Methamphetamine and heroin are an unusual combination.”
The meth-and-heroin combo is referred to as a goofball, Ciccarone added, because it makes the user feel “a little bit silly and a little bit blissful.”
For Kim, adding heroin to her methamphetamine habit compounded her use. “I ended up doing both, at the same time, every day, both of them,” she said.
It was all about finding the recipe to what felt normal. Start with meth. Add some heroin. Touch up the speed.
“You’re like a chemist with your own body,” she said. “You’re balancing, trying to figure out your own prescription to how to make you feel good.”
Now Kim is trying to find balance without drugs. She’s been sober for a year. So has Amelia, the horse trainer. Her sobriety anniversary is her daughter’s birthday.
Happy Friday! The jury is still out whether we’re all growing horns out of the back of our heads because of how much we use smartphones, but apparently humans on the whole are somewhat decent people when it comes to finding wallets with cash in them. Now buckle up, because our cups have runneth over this week in terms of truly excellent health stories.
We’ll start, though, with what to look out for next week: President Donald Trump is expected to issue an executive order that would compel hospitals, insurers and others in the health industry to reveal closely guarded information about the true cost of procedures, according to The Wall Street Journal. This is the order that certain players in the health field have been dreading. It’s unclear how aggressive the administration will be with the rule, considering the rumblings of discontent already rippling through D.C. But a whopping 88% of people in a recent survey said they support such a policy — so the president is not exactly going out on a limb with voters.
Speaking of voters, this executive order comes closely on heels of the official kickoff for Trump’s reelection campaign, which took place on Tuesday in Florida. The president has been searching for ways to win back ground against Democrats on the topic of health care — and promised to issue a plan within the next month or two that would counter the buzzy “Medicare for All.”
Many Republicans, though, kind of wish Trump would channel “Frozen” and let it go. With polls showing voters favor Democrats’ stance on health care, Republicans want the president to focus on issues where they think they have an edge, such as immigration.
Adding to the prevailing narrative that health care is a winning issue for the Dems, House Speaker Nancy Pelosi is using the topic to divert attention away from the more volatile talk of impeachment. “When we won the election in November, it was health care, health care, health care,” Pelosi said earlier in the week. She also promised that Democrats would fight relentlessly against Trump’s attempts to chip away at the health law.
In short, you can pretty much guarantee health care is going to play a central role in the 2020 races.
Meanwhile, The New York Times interviewed many of the Democratic candidates about their stances on different issues, including health care. While they all agree something needs to be done about the country’s system, what that looks like becomes a dividing line in a crowded field.
A federal appeals court handed the Trump administration a win this week when a panel of three Republican-appointed judges ruled that new rules prohibiting federal family-planning grants to health clinics offering on-site abortions or referrals for the procedure can go into effect. The changes — which are largely thought to be targeting Planned Parenthood and are called a “gag rule” by opponents — have provoked fierce backlash among abortion rights groups that say the implementation of such restrictions will be devastating to women who rely on the clinics for health care. Although the decision isn’t the final say on the matter, the judges predicted the administration will prevail in this case.
Meanwhile, a look at two abortion clinics 20 minutes apart highlights the great divide evident around the country as state-level laws stand in stark contrast to one another.
Politico lifts the curtain on the ever-deepening quarrel between White House aides and HHS Secretary Alex Azar. “Alex is outnumbered and keeps losing,” an individual familiar with the simmering tensions told reporters. With Trump’s focus on health issues as he launches his campaign, the discord threatens to derail progress on key administration agenda items like high drug prices.
Major stakeholders have been anxiously watching congressional action on surprise medical bills — an issue most lawmakers agree needs to be addressed but for which there are several approaches. Industry players each have a preferred strategy (such as independent arbitration), but powerful HELP Committee leaders Sens. Alexander Lamar and Patty Murray hadn’t yet settled on theirs. That changed this week when they announced they back a “benchmark” plan, meaning insurers would pay a provider a rate similar to what the plan pays other doctors in the area for the same procedure. Alexander had “intrinsically” supported a different plan previously but changed his mind after the Congressional Budget Office ruled that this one would garner the most federal savings.
Hospitals were not pleased with the direction this is taking, calling the tactic “unworkable.”
One of my favorite stories of the week looks at how those much-hated robocalls, which are mostly just a huge nuisance for most of us, become a life-and-death situation for hospitals. While the rest of us can either block or ignore the calls, hospitals don’t have that option. And when the calls come in waves of thousands, they can jam up emergency lines.
I know a lot of people are creeped out by the privacy issues of having digital ears listening in on your every move, but there could be a flipside. Researchers want to train Alexa et al. to listen for gasping that could signal someone is experiencing cardiac arrest.
Arkansas’ implementation of a Medicaid work requirement was closely watched by other conservative states eager to follow its lead. Advocates were appalled by the tens of thousands of people dropped from coverage, while state leaders and the Trump administration insisted that an improving economy was the reason behind the declining enrollment.
But a new study adds another layer to the debate: The work mandate has done nothing to affect the number of people who are unemployed in the state. So, after all of that, fewer people have insurance and fewer people have jobs.
In news that surprised zero people, but should be noted anyway: Drugmakers made official their opposition to the new rules requiring them to include prices in TV ads. They say the requirements violate their freedom of speech rights and will be confusing to patients, since the prices aren’t what most people end up paying for the drugs.
In the miscellaneous file this week:
• It often seems as if the anti-vaccination movement is this grassroots thing that has bubbled up through social media. But the tried-and-true “follow the money” method paints a more interesting picture, starting with a wealthy Manhattan couple who pumped millions into the cause over the past several years.
• Immigrant children in U.S. custody give bleak accounts to lawyers of their experiences — including reports of toddlers without diapers being cared for by 10-year-old girls. The lawyers involved say that during their interviews the “little kids are so tired they have been falling asleep on chairs and at the conference table.”
• The youth suicide rate appears to have reached the highest since the government began collecting such statistics in 1960 — driven, in part, by a sharp increase among older teenage boys.
• Firefighters who die of cancer outnumber firefighters who die responding to an emergency “at least ten, 20, 30 to one.” Yet the very cities they risk their lives protecting are turning their backs on them once they become sick. “My city’s workers’ comp carrier initially flat-out said, ‘We don’t cover cancer,’” one firefighter recalled.
That was a fairly grim file to end The Friday Breeze with, so make sure to check out Stat’s list of 23 of the best health and science books to read this summer to give yourself a little boost to finish off your week. And have a great weekend!
SACRAMENTO, Calif. — They hoisted signs warning of corporate greed, raised their fists in solidarity against government tyranny and blasted fight songs over portable speakers.
As Queen’s “We Will Rock You” blared in the background, hundreds of parents and families from around the state gathered in front of the state Capitol Thursday morning to testify about a bill they said would — if passed — spark a revolution.
Not a bill to raise taxes. Not a bill to expand fracking. A bill to determine which kids must get their routine shots.
Picnic vibes outside the capitol, with a few hundred folks who are opposing #sb276. Lots of children, infants to teens. Lots of signs criticizing @DrPanMD, big pharma, gov’t regulation. Themes of the opposition are yellow and “freedom.” pic.twitter.com/r7xuZatJhb
— Harriet Blair Rowan (@HattieRowan) June 20, 2019
For this group of passionate Californians, a measure by pediatrician and state Sen. Richard Pan (D-Sacramento) poses a threat to their rights as parents. For the author, public health officials and other supporters, it’s a necessary step to keep kids safe — in school and beyond.
The bill, SB 276, would tighten the rules on which children would qualify for medical exemptions from vaccinations. It was passed by the state Senate in May, and had a key hearing before the Assembly Health Committee on Thursday.
Before the hearing, bill opponents, many of them clad in yellow vests similar to those worn by protesters in France, listened as Robert F. Kennedy Jr., a high-profile vaccine opponent, hyped the crowd.
In a speech echoing others he has given around the country (and which have drawn a public rebuke from his siblings), he spoke of Jews in concentration camps and other minorities throughout history who have been “scapegoats” for diseases.
Behind him, poster-size photos of Pan, the object of vaccine opponents’ ire, were splattered in red, overlaid by the word “LIAR.”
The rancor continued inside the Capitol. As Pan presented his measure before the committee, parents in the back of the room, hands wrapped in yellow tape with “false” written on the palm, raised their hands, hissing as he spoke.
— Harriet Blair Rowan (@HattieRowan) June 20, 2019
It wouldn’t be the last time lawmakers would have to ask them to be quiet and follow the rules.
The committee heard an amended version of the bill, which is intended to curb what has been described by public health experts as a dangerous increase in medical exemptions from vaccination. Since a state law enacted in 2016 ended vaccine exemptions based on religious and personal beliefs, children can be excused only on medical grounds.
Since then, the number of medical exemptions has jumped, and the exemptions are clustered in many of the same parts of the state that previously had high rates of religious or personal belief exemptions, according to new state data. Around the state, 117 schools reported that 10% or more of their kindergartners had been granted medical exemptions in the 2018-19 school year.
The measure underwent significant changes earlier this week to allay concerns from Gov. Gavin Newsom and others that it would put bureaucracy between doctors and patients. In the new version, officials with the state Department of Public Health would review medical exemptions for children at schools where more than 5% of kids aren’t vaccinated, and those written by doctors who have handed out more than five exemptions in a calendar year.
But the amendments didn’t seem to address the fears of its most ardent opponents, even as Newsom, a Democrat, told reporters Tuesday that he would sign the new version.
In testimony supporting the bill, Jenni Balck, a teacher and mother of an immunocompromised child who had a heart transplant, explained that her child’s health relies on community immunity.
“Parents want what’s best for their kids,” said Balck. “I understand that people who don’t want to vaccinate think they are doing what’s right for their kids. But they put my child in danger every day,” she said, noting cases of whooping cough in her Southern California neighborhood just two weeks earlier.
Doctors representing major medical providers around the state — including Kaiser Permanente and Sutter Health — spoke in support of the bill. (Kaiser Health News, which produces California Healthline, is not affiliated with Kaiser Permanente.)
“We’re seeing preventable disease on an almost daily basis,” said Dr. Alisa Awtry, a family physician in Sonoma County who came with her infant to testify in favor of the measure.
— Harriet Blair Rowan (@HattieRowan) June 20, 2019
Another physician, Dr. Bob Sears of Orange County, a national leader in the anti-vaccine movement who was placed on probation by the Medical Board of California, testified on behalf of the opposition — speaking so long he didn’t leave time for Kennedy.
Sears, a pediatrician, said the bill would penalize physicians for doing their jobs, comparing it to “stop and frisk” public safety tactics that often target minorities and sow fear.
He was followed by hundreds of vaccine skeptics who spent the next three hours formally stating their opposition to the bill. Several warned of what would come if the bill passes. “You’re going to cause a revolution,” one woman said. Others said they would move out of state. Pan stood stoically at the front of the room, turning to acknowledge each person who testified.
— Harriet Blair Rowan (@HattieRowan) June 20, 2019
Numerous opponents spoke of government overreach.
“I don’t think we should use taxpayer money to micromanage doctors,” said Heather Marie Levin Mulligan, 40, of Roseville.
Heather Marie Levin Mulligan is here to testify against #sb267 with her son Kai. She is hesitant about the vaccine schedule, and opposes the bill because she thinks government should leave those decisions to doctors pic.twitter.com/xLrDYQ5DkI
— Harriet Blair Rowan (@HattieRowan) June 20, 2019
After more than five hours of testimony, the bill passed the committee.
But the hearing didn’t appear to change many minds.
“We will not comply!” opponents chanted as they marched on Newsom’s office after the hearing.
— Harriet Blair Rowan (@HattieRowan) June 21, 2019
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