It isn’t clear yet what kind of policies Congress is considering that could hurt the pharmaceutical industry’s bottom line, but it has been reported that the reforms could cost the industry $115 billion. In other pharmaceutical news: the CVS-Aetna merger, hep C treatment and prisoners, biotech, and President Donald Trump’s drug pricing strategy.
As part of its effort to curb high prescription drug costs, the Trump administration is considering an experiment that has triggered strong opposition from Americans for Tax Reform, Grover Norquist’s powerful conservative organization, which the president typically counts among his supporters.
One of the most visible elements of the group’s battle plan is a nationwide commercial, on which it has spent almost half a million dollars, according to estimates by ad tracker iSpot.tv. It has been on the air since May.
The Americans for Tax Reform’s ad begins with President Donald Trump saying, “America will never be a socialist country.”
It then quickly pivots to take aim at the administration.
“You’re right, Mr. President,” the ad continues. “But the Department of Health and Human Services is considering a plan to adopt socialist price controls from foreign countries.”
That led us to wonder if the organization’s take is an accurate description.
The ad is referring to an initiative being considered by the administration that would be part of the president’s promise to curb high drug prices. Though not expected to launch until 2020 at the earliest, it would test-drive the effectiveness of setting price limits on what the federal government pays for prescription drugs. It would tie some payments in Medicare Part B — which covers hospital and physician-administered drugs — to prices charged in other countries, mostly in Europe. The trial would be limited to brand-name medicines that are responsible for a high percentage of Part B spending.
We contacted Americans for Tax Reform to find out the basis for this claim. John Kartch, a spokesman, said “price controls themselves are socialist” and argued that they constitute a “fundamental building block of state control of the economy.”
But independent experts we spoke to said this characterization, while politically powerful, is misleading.
“Socialism,” as defined by Merriam-Webster, involves “collective or governmental ownership and administration of the means of production and distribution of goods.” In this case, the label doesn’t accurately reflect distinctions in how different countries handle drug pricing and neglects to consider important context about the American pharmaceutical market.
The International Pricing Index
HHS is still deciding which countries it might include in its “international pricing index,” or IPI. Under consideration are Austria, Belgium, Canada, the Czech Republic, Denmark, Finland, France, Germany, Greece, Ireland, Italy, Japan, the Netherlands and the United Kingdom.
Some of those nations may use strategies that could be termed “socialist.” Also on the list, though, are countries that use market-based approaches, experts said.
“Each of these countries has a complex set of decision points, and they’re not the same,” said Stacie Dusetzina, associate professor of health policy at Vanderbilt University.
In Germany, for instance, the first year a drug is on the market, the manufacturer can set its own price. After that, an independent board assesses the drug’s added clinical value, which is used to determine what the country’s nonprofit insurance plans — known as sickness funds — will pay. That, drug pricing experts said, is hardly “socialism.”
Even the “price control” phrasing is suspect, some argued.
That’s because, while the IPI countries vary in strategy, many do not dictate what a pharmaceutical company charges for a drug, said Rachel Sachs, an associate professor of law at Washington University in St. Louis who studies drug pricing. Rather, she said, they are simply saying what the national insurance plan will pay.
Some of the countries in question also maintain private insurance systems beyond the government plan. For instance, in Canada, people have options, depending on the province where they live, of various forms of public and private prescription drug coverage, which differ in generosity. Therefore, what the government pays for a drug doesn’t necessarily dictate arrangements negotiated between drug companies and other insurers.
Plus, experts said, the advertisement’s framing ignores the role the U.S. government already plays in shaping the pharmaceutical market.
Currently, Medicare Part B cannot negotiate lower prices, and it is required to cover drugs that come to market. Drug patents, meanwhile, give manufacturers monopolies over their products for a set period — and the power to charge higher prices. Together, that means the government has no bargaining power, while drugmakers can set the prices where they want.
“We really need to take a look at our own system, and it’s quite far removed from a free market,” said Ameet Sarpatwari, an epidemiologist and lawyer at Harvard Medical School, who studies drug-pricing regulations.
Some argued that incorporating the IPI into Medicare Part B payments might inject more, not less, competition into the current payment system. The administration has made this argument, too. For instance, when we contacted HHS for comment, a spokeswoman directed us to this speech by Secretary Alex Azar as well as this December blog post, both of which outline how this approach would strengthen the U.S. bargaining position by setting Medicare’s rates more in line with those of other nations.
Finally, there’s the issue of whether the United States would actually be “adopting” strategies used by other countries. Using their prices as a reference point isn’t the same thing as importing their regulatory system.
A Broader Conversation
The “socialist price control” label is one of a few commonly deployed arguments against efforts to curb drug prices — one that’s “effective but misleading,” Sarpatwari argued.
Other claims in the advertisement — that HHS’ proposal would reduce pharmaceutical innovation and limit access to lifesaving medical treatments — are also popular attack lines.
There isn’t a good body of research to suggest this would happen. Sachs suggested that, if prices come down, there would likely be some impact on either drug access or innovation. Assessing the magnitude of those changes is difficult at best, though. And, she said, it would be balanced against people who are, under the changed system, newly able to afford treatment.
Among other challenges, experts noted, would be obtaining accurate data about what other countries pay for drugs. Another: finding a strategy to force manufacturers to accept the lower price.
But those aren’t concerns Americans for Tax Reform chose to emphasize. Given the experimental nature of what the administration is considering, they’re also issues HHS could learn from and address based on how things go, Dusetzina said.
The advertisement in question claims that HHS “is considering a plan to adopt socialist price controls from foreign countries.”
HHS is weighing a strategy that would take into account prices paid in other countries to set amounts paid by the Medicare program. But the advertisement’s language — in particular, the phrase “adopt socialist price controls” — is reductive, inaccurate and misleading, experts said. These strategies do not necessarily constitute “price controls.” And while some could conceivably be viewed as “socialist,” it is inaccurate to suggest all of them are.
Furthermore, the claim ignores important context about the American drug-pricing market.
This claim contains an element of truth but ignores critical facts — and is in some cases actively misleading. We rate it Mostly False.
Lauren Sullivan, whose 21-month-old daughter, Daryn, had been trying to appeal UnitedHealth’s initial refusal and was running out of time to receive the drug before her second birthday in October, when the drug has to be administered. The company also approved claims for three other patients. In other news, UnitedHealth beats expectations for the quarter, prompting company to boost earnings guidance.
The case centers on 80,000 events Novartis held between 2002 and 2011 that federal prosecutors allege amounted to kickbacks masquerading as educational meetings.
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Former Vice President Joe Biden has said if he’s elected president he would build on the Affordable Care Act rather than move to a whole new health care system, such as the “Medicare for All” plan supported by some of his primary opponents for the Democratic nomination. But his campaign’s new health plan would include many things Congress tried and failed to pass as part of the health law, including a government-run “public option” plan that would be widely available.
Meanwhile, the U.S. House voted to repeal one of the ACA’s key financing mechanisms, voting overwhelmingly to cancel the so-called “Cadillac tax,” which was set to take effect in 2022. It is a 40% excise tax on the most generous employer-provided health plans.
And it was not a good week for Planned Parenthood. The women’s health provider parted ways with its president of less than a year, Leana Wen. And the Trump administration announced it would begin enforcement of new rules for the federal family planning program that Planned Parenthood said will force it to stop participating.
This week’s panelists are Julie Rovner from Kaiser Health News, Joanne Kenen of Politico, Kimberly Leonard of the Washington Examiner and Margo Sanger-Katz of The New York Times.
Among the takeaways from this week’s podcast:
- Biden’s health proposal seeks to lower out-of-pocket costs for many people in several ways. For example, it would make federal premium help available to all who buy their own insurance, not just those with low and middle incomes. It would also change how federal premium subsidies are determined. It would base the assistance on the cost of a gold plan, rather than the current practice of using the second lowest priced silver plan. Since gold plans are more generous, using that standard could lower the amount of deductibles and copayments people getting subsidies have to pay.
- The ACA’s Cadillac tax has been strongly endorsed by health economists, who view it as a way to cut the amount of unnecessary care some people with generous plans seek. But many employers, consumers and labor unions don’t want to tinker with the current tax system of job-based insurance.
- The administration’s decision to go forward with its new rules for the Title X family planning program — while critics are challenging those regulations in the courts — will have a significant effect on Planned Parenthood’s finances. But the group gets even more government money through the Medicaid program.
- Despite two setbacks last week in the administration’s efforts to reduce drug prices, President Donald Trump is continuing to hint that he wants to go forward with a plan to tie some Medicare drug prices to what people in other countries pay for the medications.
- Federal officials have announced that opioid deaths have declined, but it is not clear that opioid overdoses or addiction has declined.
Plus, for extra credit, the panelists recommend their favorite health policy stories of the week they think you should read too:
Julie Rovner: The New York Times’s “Where Roe v Wade Matters Most,” by Quoctrung Bui, Claire Cain Miller and Margot Sanger-Katz.
Joanne Kenen: Scientific American’s “Why Doctors Are Drowning in Medical School Debt,” by Daniel Barron.
Margot Sanger-Katz: Bloomberg News’ “Deadly Disease Is Treatable, But Newborn Screening Patchwork Leaves Many Vulnerable,” by Michelle Cortez.
Kimberly Leonard: The Washingtonian’s “DC Types Have Been Flocking to Shrinks Ever Since Trump Won. And a Lot of the Therapists Are Miserable,” by Britt Peterson.
To hear all our podcasts, click here.
The common comparison of having increased transparency in drug pricing to forcing car companies to add sticker prices is flawed because it overstates the usefulness of the knowledge by implying that patients have much more power to act — to shop around or negotiate — than they actually do. In other pharmaceutical news: lobbying efforts on Capitol Hill, money for a biotech firm, and a CBO projection on the Senate’s drug pricing bill.
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.
In Defense Of Opioid Prescribers
Articles such as this one are leaving elderly patients with debilitating pain and also hospice patients struggling to get adequate pain control (“Surgeons’ Opioid-Prescribing Habits Are Hard To Kick,” June 21). After seeing my father in agony in hospice care this year, I am upset by this opioid-induced fear of prescribing. Also, leaving post-surgical patients in pain by not prescribing enough pain medication is a shame in this day and age. The anti-opioid movement pendulum has swung way too far to the opposite side. I watched my dad suffer needlessly in hospice care because the nurse practitioner (who, by the way, never once visited my father) would balk anytime we begged for them to relieve my father’s uncontrolled pain. I am angry. I am sorry. But things need to change in the health care field. Medical practitioners are more scared of getting in trouble than they are helping patients in pain.
— David Colegrove, Powell, Ohio
Data shows that for most common surgical procedures, such as laparoscopic appendectomy or cholecystectomy, the right duration of opioid use is a day or at most two days of IR medicine. Yet many patients get sent home with much more than that https://t.co/04zmZVkqli
— Scott Gottlieb, MD (@ScottGottliebMD) June 21, 2019
— Dr. Scott Gottlieb, Washington, D.C., former commissioner of the Food and Drug Administration
You are engaging in the worst kind of public shaming with this investigation of opioid prescribers (“Opioid Operators: How Surgeons Ply Patients With Painkillers,” June 20). I remember when my dad had bypass surgery and he was in a lot of pain. I look at these numbers and wonder how many patients didn’t have someone to get the prescription filled. We are attacking the wrong people. The overdoses are caused by illegal heroin and fentanyl. I have been on these medications a long time for intractable pain. I have never taken more than prescribed and nearly all patients like me do the same. If I have been taking the same dose for six years, I would say the odds of an overdose are slim to none. Learn the difference between physical dependence and addiction.
— Dennis Ewing, San Antonio
The tone of this article and tweet borders on slander. Inaccurate unfair criticism. There is NO DOUBT Surgeons have changed their prescribing habits and patients (as first comment proves) are not homogenous.
— Edward T Chory (@DrEdMDBFD) July 7, 2019
— Dr. Edward Chory, Lancaster, Pa.
Your project entitled “Opioid Operators” is ridiculously inflammatory. I hope you get sued by the same doctors you are “exposing.” You have no idea what each individual patient needs because you aren’t there.
In addition to being wracked with the pain of complex regional pain syndrome (CRPS) 24/7, I am also the caregiver to my husband, who has end-stage renal disease. Taking away pain medication when 99% of the pain patients who use it never abuse it is a crime. It will have no effect on addiction. It will just kill people who are already frail from having to combat pain from incurable disorders.
— Bijoux Faraj, Concord, Calif.
I’m legit SHOCKED that 10 pills is the Johns Hopkins recommended # for minimally invasive gallbladder removal. I got ~120 pills~ of generic oxycodone and that was barely enough.
— madi alexander (@MadiLAlexander) June 24, 2019
— Madi Alexander, Arlington, Va.
Why do groups constantly put “information” out to the public that fits their narrative? This story about opioids is nothing more than a reason to bash doctors who prescribe pain medication to people in pain. Why not investigate why doctors prescribe this medication to patients? I have had chronic pain for 25 years. These stories have caused my medication to be all but taken away. How about running a “rebuttal” to that story and let the “other side” speak?
— Dennis Shivers, Lake Ronkonkoma, N.Y.
Tough: they need to prescribe fewer #opiates and then, believe it or not, be AVAILABLE for patients who might need a refill, and actually talk to or examine them!! (They don’t like to be bothered…that is the problem!)#opioidcrisis
— peter grinspoon (@Peter_Grinspoon) June 22, 2019
— Peter Grinspoon, Boston
Boggled By Mind Games In ACA Court Battle
I want to congratulate Julie Appleby (“DOJ Lawyers Try New Tricks To Undo Obamacare. Will It Work?” July 12) for distilling what I consider to be one of the worst oral presentations by the Department of Justice I have ever seen or heard (I listened to the entire audio of the oral arguments). I say this as a health care attorney of some 46 years who was also brought to D.C. to counsel members of Congress on the Affordable Care Act as it was being developed.
The positions taken by DOJ counsel floored me — viz a viz, that the outcome of the case should apply to only the plaintiff states and not the rest of the country; or that the entire act is inseverable from the mandate provision, but since the act is “complicated” (really? of course it is), it would have to be worked out which provisions could remain in effect — for only the plaintiffs? for the entire country?
Scholars on both sides of the ACA agree the decision of the lower court was anathema to sound judicial foundation and precedent. The critical fact is that the 2017 Congress — not the one that passed the ACA in 2010 —eliminated the tax/penalty to zero and kept the rest of the act in place. Judges do not eliminate laws unless there are clear expressions from the legislature in its legislation to do so, or the language of the act is so ambiguous as to require judicial interpretation of the words used. With the ACA, there was no expression of inseverability related to zeroing out the individual mandate … despite the DOJ telling the appeals panel there was.
Finally, Judge Kurt Engelhardt, a member of the panel hearing the case and a Donald Trump appointee, questioned why the House could not pass another bill that kept the worthy features of the ACA in the event the current law remains unconstitutional. The role of appeals jurists is to probe the strengths and weaknesses of all sides during oral argument, not ask foolish questions, considering Mitch McConnell controls the Senate, the majority of the House is blue and, of course, Trump presently remains president. As I have written for over a decade before it was in vogue to do so, health care is a right for all Americans, and the ACA is the embodiment of this philosophy ingrained within the fabric of our country. To even posture a new health care bill given the current political environment is glaring fool’s gold.
— Miles J. Zaremski, Highland Park, Ill.
Caring For Survivors Of Sexual Assault
I just read Michelle Andrew’s story about the staggering, and often re-traumatizing, hospital bills that survivors of sexual assault frequently receive after getting a forensic exam in a hospital setting (“Despite Federal Protections, Rape Victims Still Get Billed For Forensic Exams,” July 12). At The SAFE Alliance in Austin, Texas, we operate a community-based sexual assault clinic called Eloise House, where survivors can receive a private exam and evidence collection as well as free medical care after experiencing an assault.
We’ve found that this free, trauma-informed model eliminates many barriers for people who’ve experienced an extremely traumatizing situation by eliminating emergency room wait times and creating an environment that feels more like a home than a hospital. Our advocates work alongside our forensic nurses to offer emotional support, explain the steps of the exam process, answer questions about what the reporting process may look like if the survivor chooses to report, assist with safety planning and much more. Since we opened the clinic in 2015, we’ve served over 2,000 survivors of sexual assault in Central Texas.
I hope that one day every community has access to a clinic like Eloise House, to make the healing process even a little easier for survivors of sexual assault. Thank you for reporting on this little-known issue.
Emma Rogers, Austin, Texas
As Rural Areas Lose Hospitals, Misplaced Priorities?
I’m getting more discouraged as people exclaim how well our economy is doing when there are losses in our communities such as the closing of rural hospitals (“Have Cancer, Must Travel: Patients Left In Lurch After Hospital Closes,” July 1). Similar reductions and losses are occurring in education, infrastructure and environmental protection, to name a few. This contrast must be reported so citizens can better understand these upside-down priorities are hurting all of us — except for the ultra-rich. This downward spiral will ultimately catch up with them, too, as they will then end up paying for the resultant problems this “ignore-ance” will create.
— Victoria Mosse, Joseph, Ore.
This was the closest hospital for my in-laws. Long distances for cancer treatment are all too common in rural America. My dad had 60 miles each way to get to his radiation appointments in another part of Kansas. https://t.co/Gle9TrvtTd
— Mark Fleury (@ME_Fleury) July 1, 2019
— Mark Fleury, Washington, D.C.
Hospitals in rural areas are closing. Americans are not being treated with human dignity and care. And ignorant people of this country have the audacity to care about immigrants? I have no respect for the immigrants coming here for all the freebies of medical care and housing while Americans are being treated like second-class citizens.
— Debra Schaal, Hobe Sound, Fla.
Terrible things happen when rural hospitals close. But in many states, these are preventable tragedies. Why hasn’t Kansas expanded Medicaid, which would save many hospitals? Why doesn’t this story ask? Big miss. @SJTribble https://t.co/HAcmG0Waha
— Jim Tananbaum (@JTananbaum) July 1, 2019
— Jim Tananbaum, San Francisco
Preventing Falls For A New Generation
Your piece “More Seniors Are Dying In Falls. Doctors Could Do More To Reduce The Risk” (June 27) addresses an important yet rarely discussed epidemic that has become increasingly deadly over the past decade. According to the Centers for Disease Control and Prevention, fall deaths among seniors increased by 31% from 2007 to 2016 — a trend slated to worsen over the next few years as more baby boomers enter retirement. Falls are now the No. 1 cause of injury for older Americans, resulting in 800,000 hospitalizations every year and $50 billion in health care spending.
As a physical therapist (PT), I’ve seen the effectiveness of some of the treatment strategies mentioned in this article. But, while fall risk assessments and personalized patient plans are important preventive tactics, one important factor that wasn’t mentioned in the article is the value of telehealth in reducing seniors’ risk of falling.
Telehealth appointments and virtual fall risk assessments can be incredibly beneficial, particularly for patients with age-related disabilities and limited mobility. Telehealth services provide valuable opportunities for seniors to receive professional PT in the comfort and privacy of their own homes. In turn, this reduces access barriers — particularly for patients in rural and underserved areas — and helps seniors who struggle with transportation issues get the care they need. In fact, one of the initiatives mentioned in your article included a strong telehealth component, which improved compliance with and the effectiveness of PT-prescribed fall prevention exercise regimens. Because falling once doubles the chances of falling again, it is critical to empower America’s seniors with care that makes them stronger, steadier and more flexible.
With an increasingly graying U.S. population, this problem demands a novel and comprehensive response. Having helped countless patients reduce their fall risk, I believe that telehealth PT, together with other solutions mentioned in your article, will play an important role in addressing this epidemic. By embracing evidence-based practices such as telehealth PT, we can seize the opportunity to prevent falls, reduce Medicare spending and, ultimately, save lives.
— Nikesh Patel, PT, DPT, physical therapist and executive director of the Alliance for Physical Therapy Quality and Innovation, Washington, D.C.
Great tips fr @judith_graham on #fall prevention. Doctors Could Do More To Reduce The Risk. https://t.co/gsklcP5QIW via @khnews
Would add using hiking poles when walking on uneven surfaces.
And trifocals are G-d’s gift to orthopedists.
I also rec some sort of medical alert system
— Judy Stone (@DrJudyStone) July 6, 2019
— Dr. Judy Stone, Cumberland, Md.
— Wendl Kornfeld (@WendlKornfeld) July 1, 2019
— Wendl Kornfeld, New York City
While Fact-Checking Debates, Check The Moderator’s Attitude
While the facts were somewhat interesting, the elephant in the room was the rigged, wildly biased phrasing of host Lester Holt’s “Medicare for All” question: “Who here would abolish their private health insurance in favor of a government-run plan? Just a show of hands …” On this point, I’m surprised and disappointed KHN didn’t deconstruct that framework (“PolitiFact & KHN HealthCheck: ‘Medicare For All’ Emerges As Early Divide In First Democratic Debate,” June 27).
Last week, the latest voter poll from The Washington Post and ABC News included a Medicare for All question so carefully crafted it could serve as the gold standard for questions that strive to eliminate respondent bias on emotionally charged issues. It asked: [Would you support or oppose M4A] “if there was no private insurance option available?” This phrasing removes the actor: No one is abolishing or taking away anything. It’s the passive voice put to exquisitely good use to avoid bias: “… if there was no private insurance option available.”
Also, notice pollsters’ use of the word “option.” It implicitly frames private insurance as something expendable. It’s an option. Not a requirement, not written in stone. I give big kudos to the pollsters for this careful, and truthful, framing.
And while we’re on the subject of wording: The day before the first debate, an NPR commentator prospectively boiled it down to a struggle between “pragmatists” and “progressives.” Obviously, progressives advocate for substantive change such as Medicare for All — which by implicit definition is not “pragmatic.”
Current public policies that leave us with upward of 500,000 medical-related bankruptcies a year and 36,000 annual deaths attributed strictly to lack of health care coverage are somehow blandly acceptable as “pragmatic.” Needless to say (but I’ll say it anyway), this is an affront to both logic and morality.
— Ira Dember, Houston, founder of FairNow.org
Ensuring The Robust Right To Appeal
On behalf of the California Association of Health Plans, which represents 46 public and private health plans that collectively provide health care coverage to over 26 million Californians, we would contend that the “Asking Never Hurts” column “Did Your Health Plan Deny You Care? Fight Back” (July 15) mistakenly implies that California’s long-standing system for handling grievances, complaints and medical reviews is somehow confrontational, contentious and unknown. The fact is that California has had a robust framework of consumer protections for decades — long before the Affordable Care Act created similar consumer rights at the national level. Our system of resolving disputes balances maintaining a functional and affordable health care system while giving enrollees and providers an opportunity to appeal.
If a patient’s claim is denied by their health plan, the patient has the right to appeal with their health plan, and the right to an independent medical review by the state regulator if they disagree with the health plan’s decision. Independent medical reviews are conducted by a team of providers that have no affiliation with the health plan, and the decision of the independent medical review is binding.
Health plans ensure enrollees are aware of their existing consumer protections under California law, and we provide a comprehensive list of covered services when they are medically necessary. This happens millions and millions of times without dispute. When there is a difference of opinion, health plans want to get it right.
Every Californian deserves to have the peace of mind that they have access to an independent appeals process should they need it. California’s health plans work hard to provide consumers with that peace of mind as we continuously strive to improve outcomes for patients and provide accessible, high-quality, affordable care for all Californians.
— Charles Bacchi, president and CEO of California Association of Health Plans, Sacramento
A Handy Takeaway From Your Podcast
I heard the “An Arm and a Leg” podcast recently (“Forget The Shakedown. To Get Paid, Hospitals Get Creative,” June 12). Great stuff!
Then I dislocated a bone in my foot and went to see an orthopedist at SportsMED Orthopedic Surgery & Spine Center in Huntsville, Ala. Doc ordered an Aircast AirSelect brace. The brace shop said my insurance covered it 100%. That was good, so I had them fit it. My foot felt better right away, more stable. Then, as I’m ready to leave, I’m told I have to sign a digital pad with only a signature space. “What is it you want me to sign?” I asked.
Turns out it was a form stating I agreed to pay all costs that may be later billed and not covered by insurance (which they could not tell me what that would be). Long story short — forget about my insurance covering it 100%. After checking with Blue Cross Blue Shield, I learned my out-of-pocket cost could have been $378.
If I had come in with no insurance, it would only be $110, and a variety of other permutations of random pricing all “the fault of my insurer, not their pricing,” per their insurance supervisor. Having heard your podcast, I checked Amazon — an identical Aircast was $78 with free shipping. So, I limped out and ordered it on Amazon. At least I knew how much I would pay. The person before me left with a knee brace for his son for a $415 insurance copay.
— Lisa Moore, Huntsville, Ala.
Out In The Open About Well-Thought-Out Exit Strategies
This is a topic (“In Secret, Seniors Discuss ‘Rational Suicide,’” June 25) that should be public, not sequestered in private. My 87-year-old father and I have had this conversation, and it’s not taboo in our family. Thank you for talking about it.
It’s sad that as a society we can’t face the fact that people want to have choice, especially on the quality of their life and remaining years — whether or not they have a terminal diagnosis. Just because medicine could possibly prolong our lives doesn’t mean we want it to do so.
— Laura Palmer, Denver
Would love to know if the individuals meeting to discuss this have their advance directives in place. That is a way to address fears of decline, I think. Nevada failed to move forward a death with dignity bill to a vote this Legislative session so it is a fraught topic.
— Homa S. Woodrum (@woodrumlaw) June 25, 2019
— Homa S. Woodrum, Carson City, Nev.
I think a point missed may be that many seniors are becoming increasingly distraught with the state of the world — not so much from depression, but from the pervasive hostility, anger, loss of traditional values, ignorance, lack of caring, political bickering and general “meanness” that is the world nowadays.
Together with my physical limitations that further limit my ability to find continued meaning in life, I am glad to say that I have an exit strategy in place that I can activate when the time is right. I think if the right to choose were available and supported, there would be (and likely will be, if current trends continue) more interest in having this option more easily available.
— Dr. Bill Saunders, Snohomish County, Wash.
This goes for anyone who has a debilitating disease.
— Rich Meyer (@richmeyer) June 25, 2019
— Rich Meyer, Naples, Fla.
I’m 65, healthy, happy and enjoying life. 25 years from now I hope to be 90, healthy, happy, and enjoying life. I might also be 90, bed-bound, in daily pain, and emotionally spent. These days it’s not uncommon to outlive our bodies. I’ve seen. I get it. https://t.co/HOLTmWL7mi
— Duane Blackwell (@DuaneBwell) June 25, 2019
— Duane Blackwell, Alexandria, La.
No More Band-Aid Solutions On Surprise Medical Bills
An approach to solving this problem is to set standard costs for all procedures (“Bill Of The Month: A Year After Spinal Surgery, A $94,031 Bill Feels Like A Back-Breaker,” June 17). Using Medicare reimbursement as a benchmark, set national reimbursement rates adjusted for regional cost of living. Set the rates as Medicare plus a percentage and require all providers to accept those rates. This would do away with the need for networks.
Standardize insurance plans using the Medicare Part B concept. There can be a variety of plans, but each insurer must offer the exact same coverage for a specific plan. Then the purchaser can make an informed comparison among plans. If the goal is to lower medical costs, standardization, along with best practices is probably the best approach.
We need to drive out the unnecessary costs and eliminate the annual 160,000 unnecessary deaths and estimated 100 million medication errors in the U.S. hospital system. The unnecessary annual death total is greater than annual opioid deaths, gun violence deaths and automobile accident deaths combined.
This will be a long struggle because of the entrenched financial interests, but we need to draw a line in the sand.
— Michael Hausig, San Antonio
#MedicareforAll. Fulfilling the Hippocratic oath.
— Kerri Barber, One of the Squad (@ACA_Sherpa) June 17, 2019
— Kerri Barber, Chicago
Not Anti-Vaccine, Just Against This Legislation
I oppose Senate Bill 276 in California (“A Proposal To Make It Harder For Kids To Skip Vaccines Gives Powerful Voices Pause,” June 14). I have a child who nearly died from seizures after being administered the DTaP vaccine [to guard against diphtheria, tetanus, and whooping cough, or pertussis]. That reaction is a CDC-acknowledged adverse event. Stop calling everyone who opposes this bill “anti-vaccine activists.” While some people might characterize themselves as “anti-vaccine,” most people are simply parents who did vaccinate their child until they were seriously harmed. To call us “anti-vaccine” activists and ignore that fact is extremely deceptive.
We are activists now, that part is true. We had to become activists, because these organizations you mention in your article (such as the American Academy of Pediatrics) have done nothing to help our children. The AAP is a lobbying organization that receives funds from vaccine manufacturers. It lobbied against AB-2832 (Assemblyman Travis Allen), which was a one-sentence bill that would have put a link on the California Department of Health website to two “.gov” websites: the Vaccine Adverse Event Reporting Systems (VAERS), the database for serious adverse events after vaccination, and the National Vaccine Injury Compensation Program. The purpose was to help parents find this information when they need it. That the AAP lobbied against it says everything you need to know about their priorities when it comes to vaccines. They are not doing what is in the best interest of families. Clearly, their pharmaceutical company funding influences their lobbying.
In your story, Dr. Michelle Bholat’s concern about who would qualify for a medical exemption is exactly the same concern that parents opposed to this bill have. There is a good chance my child would not qualify for a medical exemption to the vaccine that nearly killed him, and he definitely would not qualify for an exemption to any others. If I had another child, I would not be able to get a medical exemption to the vaccine that nearly killed my son for that new baby. This bill puts our kids at serious risk for irreparable harm or even death.
— Kara Morales, San Diego
— Amesh Adalja (@AmeshAA) June 17, 2019
— Dr. Amesh Adalja, Pittsburgh
Something In The Water? Drink To Your Health!
A recently published article (“A Million Californians Don’t Have Clean Drinking Water. Where Do They Live?” June 28) cast some doubts concerning the safety of drinking water available out of the tap for Alpine County residents and visitors.
First, some background. There were 1,175 persons counted in the 2010 census in Alpine County. There are several hundred private wells in Alpine County, which are initially permitted by the county, but then managed by the owner. The Environmental Health Program staff of the Alpine County Public Health Department regulates about 40 small public water systems, including the Markleeville Water Co., Woodfords Mutual Water Co., Diamond Valley Elementary School and numerous campgrounds. Two large water systems are regulated by the California State Water Resources Control Board: Kirkwood Meadows Public Utilities District and Lake Alpine Water Co., along with the Grover Hot Springs State Park. The definition of a “large” water system is one with more than 200 connections.
The greatest risk to the public’s health from drinking water is bacterial contamination, which is controlled by disinfection. The surface water used by the large water systems is disinfected with chlorine. Byproducts of the disinfection process include trihalomethanes (TTHM) and haloacetic acids (HAA5). Managers work to achieve the ideal balance between enough chlorine to provide water free of bacterial contamination, and at the same time keeping levels of byproducts lower than the maximum contaminant level (MCL) as required by the State Water Resources Control Board.
Conclusions in the article were drawn from a review of state compliance data dating prior to 2018 and refer only to the Lake Alpine Water Co.
- The data source stated that the Lake Alpine Water Co. serves a population of 625. This includes 125 residents and 500 transients (skiers, visitors at the Bear Valley Lodge, and condos); thus, the original statement “more than half of residents” was incorrect. The data source states that Lake Alpine Water Co. serves 487 service connections. This includes 294 single-family residences, 179 multiple-dwelling units (lodge, condos), 12 commercial, and two irrigation systems. So, essentially correct, but includes water provided to visitors.
- The data shows that the Lake Alpine Water Co. was out of compliance with levels of total haloacetic acid exceeding the MCL, the latest violation on 12/31/17. However, what it does not show is that corrective action was promptly performed, with compliance obtained in January 2018. Quarterly testing during the past 18 months has shown continued compliance, and an official Return to Compliance (RTC) status will be achieved in the near future. There have not been any other violations or enforcement actions taken.
- The Water Board has never issued an order that “residents can’t drink water flowing from their taps,” as the article stated— anywhere in the county.
- In the past 25 years of records and memories, water systems in Alpine County have not exceeded MCLs for either nitrates or arsenic — anywhere in the county.
My conclusion: Drink up (water)!
— Dr. Richard O. Johnson, health officer for Alpine County, Calif.
(Editor’s note: Thank you for your salient points. The article has been revised to reflect your concerns.)
By all accounts the woman, in her late 60s, appeared to have severe dementia. She was largely incoherent. Her short-term memory was terrible. She couldn’t focus on questions that medical professionals asked her.
But Dr. Malaz Boustani, a professor of aging research at Indiana University School of Medicine, suspected something else might be going on. The patient was taking Benadryl for seasonal allergies, another antihistamine for itching, Seroquel (an antipsychotic medication) for mood fluctuations, as well as medications for urinary incontinence and gastrointestinal upset.
To various degrees, each of these drugs blocks an important chemical messenger in the brain, acetylcholine. Boustani thought the cumulative impact might be causing the woman’s cognitive difficulties.
He was right. Over six months, Boustani and a pharmacist took the patient off those medications and substituted alternative treatments. Miraculously, she appeared to recover completely. Her initial score on the Mini-Mental State Exam had been 11 of 30 — signifying severe dementia — and it shot up to 28, in the normal range.
An estimated 1 in 4 older adults take anticholinergic drugs — a wide-ranging class of medications used to treat allergies, insomnia, leaky bladders, diarrhea, dizziness, motion sickness, asthma, Parkinson’s disease, chronic obstructive pulmonary disease and various psychiatric disorders.
Older adults are highly susceptible to negative responses to these medications. Since 2012, anticholinergics have been featured prominently on the American Geriatrics Society Beers Criteria list of medications that are potentially inappropriate for seniors.
“The drugs that I’m most worried about in my clinic, when I need to think about what might be contributing to older patients’ memory loss or cognitive changes, are the anticholinergics,” said Dr. Rosemary Laird, a geriatrician and medical director of the Maturing Minds Clinic at AdventHealth in Winter Park, Fla.
Here’s what older adults should know about these drugs:
Anticholinergic medications target acetylcholine, an important chemical messenger in the parasympathetic nervous system that dilates blood vessels and regulates muscle contractions, bodily secretions and heart rate, among other functions. In the brain, acetylcholine plays a key role in attention, concentration, and memory formation and consolidation.
Some medications have strong anticholinergic properties, others less so. Among prescription medicines with strong effects are antidepressants such as imipramine (brand name Trofanil), antihistamines such as hydroxyzine (Vistaril and Atarax), antipsychotics such as clozapine (Clozaril and FazaClo), antispasmodics such as dicyclomine (Bentyl) and drugs for urinary incontinence such as tolterodine (Detrol).
In addition to prescription medications, many common over-the-counter drugs have anticholinergic properties, including antihistamines such as Benadryl and Chlor-Trimeton and sleep aids such as Tylenol PM, Aleve PM and Nytol.
Common side effects include dizziness, confusion, drowsiness, disorientation, agitation, blurry vision, dry mouth, constipation, difficulty urinating and delirium, a sudden and acute change in consciousness.
Unfortunately, “physicians often attribute anticholinergic symptoms in elderly people to aging or age-related illness rather than the effects of drugs,” according to a research review by physicians at the Medical University of South Carolina and in Britain.
Seniors are more susceptible to adverse effects from these medications for several reasons: Their brains process acetylcholine less efficiently. The medications are more likely to cross the blood-brain barrier. And their bodies take longer to break down these drugs.
In the late 1970s, researchers discovered that deficits in an enzyme that synthesizes acetylcholine were present in the brains of people with Alzheimer’s disease. “That put geriatricians and neurologists on alert, and the word went out: Don’t put older adults, especially those with cognitive dysfunction, on drugs with acetylcholine-blocking effects,” said Dr. Steven DeKosky, deputy director of the McKnight Brain Institute at the University of Florida.
Still, experts thought that the effects of anticholinergics were short-term and that if older patients stopped taking them, “that’s it — everything goes back to normal,” Boustani said.
Concerns mounted in the mid-2000s when researchers picked up signals that anticholinergic drugs could have a long-term effect, possibly leading to the death of brain neurons and the accumulation of plaques and tangles associated with neurodegeneration.
Since then several studies have noted an association between anticholinergics and a heightened risk of dementia. In late June, this risk was highlighted in a new report in JAMA Internal Medicine that examined more than 284,000 adults age 55 and older in Britain between 2004 and 2016.
The study found that more than half of these subjects had been prescribed at least one of 56 anticholinergic drugs. (Multiple prescriptions of these drugs were common as well.) People who took a daily dose of a strong anticholinergic for three years had a 49% increased risk of dementia. Effects were most pronounced for people who took anticholinergic antidepressants, antipsychotics, antiepileptic drugs and bladder control medications.
These findings don’t constitute proof that anticholinergic drugs cause dementia; they show only an association. But based on this study and earlier research, Boustani said, it now appears older adults who take strong anticholinergic medications for one to three years are vulnerable to long-term side effects.
Attention is now turning to how best to wean older adults off anticholinergics, and whether doing so might improve cognition or prevent dementia.
Researchers at Indiana University’s School of Medicine hope to answer these questions in two new studies, starting this fall, supported by $6.8 million in funding from the National Institute on Aging.
One will enroll 344 older adults who are taking anticholinergics and whose cognition is mildly impaired. A pharmacist will work with these patients and their physicians to take them off the medications, and patients’ cognition will be assessed every six months for two years.
The goal is to see whether patients’ brains “get better,” said Noll Campbell, a research scientist at Indiana University’s Regenstrief Institute and an assistant professor at Purdue University’s College of Pharmacy. If so, that would constitute evidence that anticholinergic drugs cause cognitive decline.
The second trial, involving 700 older adults, will examine whether an app that educates seniors about potential harms associated with anticholinergic medications and assigns a personalized risk score for dementia induces people to initiate conversations with physicians about getting off these drugs.
Moving patients off anticholinergic drugs requires “slow tapering down of medications” over three to six months, at a minimum, according to Nagham Ailabouni, a geriatric pharmacist at the University of Washington School of Pharmacy. In most cases, good treatment alternatives are available.
Advice For Older Adults
Seniors concerned about taking anticholinergic drugs “need to approach their primary care physician and talk about the risks versus the benefits of taking these medications,” said Shellina Scheiner, an assistant professor and clinical geriatric pharmacist at the University of Minnesota.
Don’t try stopping cold turkey or on your own. “People can become dependent on these drugs and experience withdrawal side effects such as agitation, dizziness, confusion and jitteriness,” Ailabouni said. “This can be managed, but you need to work with a medical provider.”
Also, “don’t make the assumption that if [a] drug is available over the counter that it’s automatically safe for your brain,” Boustani said. In general, he advises older adults to ask physicians about how all the medications they’re taking could affect their brain.
Finally, doctors should “not give anticholinergic medications to people with any type of dementia,” DeKosky said. “This will not only interfere with their memory but is likely to make them confused and interfere with their functioning.”
We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care and advice you need in dealing with the health care system. Visit khn.org/columnists to submit your requests or tips.
Did drugmaker Johnson & Johnson create a “public nuisance” that led to the opioid epidemic? That’s the question a state judge in Oklahoma is weighing after the country’s first trial against opioid manufacturers wrapped up Monday. The state is asking for $17 billion in damages. Jackie Fortier of StateImpact Oklahoma has covered the trial from start to finish for NPR and Kaiser Health News. This account of the seven-week trial’s closing arguments aired on NPR’s “Morning Edition” on Tuesday.
On Wednesday, Alexis Conell will mark seven years since she received the kidney transplant that saved her life, but the 53-year-old Chicago woman isn’t exactly celebrating.
Although the federal government paid most of the costs for her 2012 transplant, a long-standing Medicare policy halted coverage three years later for the drugs that keep her body from rejecting the organ.
So when Conell lost her job suddenly last September, she also lost her health insurance — and her ability to afford the 16 daily medications she needs to survive.
“I was terrified,” she said. “All you’re thinking is, ‘I don’t want to lose my kidney.’”
For nearly a half-century, Medicare has covered patients, regardless of age, who have end-stage renal disease, including paying the costs of kidney transplants and related care, which run about $100,000 per patient.
But coverage ends after 36 months for those younger than 65 who don’t otherwise qualify for the program — and that includes payment for the vital immunosuppressive drugs that cost thousands per patient each month.
Last week’s announcement of a Trump administration overhaul of kidney care in the U.S. has reanimated an effort by federal lawmakers and kidney care advocates to extend drug coverage.
“After a transplant, patients should not have to worry about whether they can afford the treatment needed to keep their transplanted kidney,” Rep. Ron Kind (D-Wis.) said in a statement.
For years, Kind has been among a bipartisan coalition in Congress championing legislation targeting kidney immunosuppressive drugs — to no avail.
The sticking point was price. A 2009 estimate by the Congressional Budget Office pegged the cost at $400 million over 10 years if the government were to extend lifetime drug coverage to those patients.
Two recent federal projections show that Medicare could actually save money — between $73.4 million and $120 million over a decade — by expanding payment for anti-rejection medications to help decrease the need for patients to get additional transplants or dialysis. Depending on financing, savings could reach $300 million in that period, suggested an estimate by the Centers for Medicare & Medicaid Services.
Armed with this data, a bipartisan coalition led by Kind and Rep. Michael Burgess (R-Texas), a physician, is expected to introduce legislation by August that would narrowly extend Medicare’s Part B program to provide drug coverage for kidney transplant patients who have no other option.
“We must ensure patients have access to immunosuppressant coverage to ensure the success of their transplant, which will keep costs down by decreasing the need for a re-transplant or further dialysis,” said Kind.
Sens. Richard Durbin (D-Ill.) and Bill Cassidy (R-La.) are poised to introduce their own legislation, sources told KHN on background.
The efforts in Congress will hinge on whether the CBO agrees that paying for the medication would save the government money, advocates said. Even the new estimates by CMS suggest that changing the program would increase costs initially, with savings apparent only after a decade.
Dr. Emily Blumberg, president of the American Society of Transplantation, said there appears to be high-level support for change now. In championing the overhaul of U.S. kidney care policy, Health and Human Services Secretary Alex Azar has cited a personal tie, noting that his father suffered from kidney failure and received a transplant in 2014.
More than 56,000 Americans with functioning kidney transplants don’t have Medicare coverage, according to data from the U.S. Renal Data System. About two-thirds pay for their medications through private insurance, Medicaid or other government programs, experts said.
But about one-third of those patients may have no other source of drug coverage, which can lead to missed doses, jeopardizing their new kidneys. A 2010 study found that nearly 70% of U.S. kidney transplant programs reported deaths or organ losses directly related to the high cost of anti-rejection drugs.
If Medicare drug coverage had been extended in 2015, it would have averted at least 375 kidney transplant failures that year alone, the latest analysis showed.
When transplants fail, patients can die — or they must return to dialysis — paid for by Medicare at a cost of about $90,000 per year, with a poor prognosis.
“It’s a no-brainer that you should do this both from a moral and ethical and, now it sounds like, cost perspective,” said Dr. Robert Gaston, a nephrologist at the University of Alabama-Birmingham who co-authored a call for coverage in an Institute of Medicine report two decades ago.
Conell battled end-stage renal disease for years before receiving her kidney transplant. When she lost her job abruptly last fall, she had to cancel scheduled medical appointments and lab tests.
She drained her savings, then nearly ran out of medication before she found a pharmaceutical firm program that provides the drugs she needs at a deep discount.
“If I had to pay full price for them, it would easily be $3,000 or more per month,” Conell said.
When her unemployment benefits ended in April, Conell qualified for Medicaid, which covers her drugs for now. The stress has been unrelenting, said Conell, who spent a day last week in the emergency room with dangerously high blood pressure.
“I was trying to look for a job, worried about paying my bills. Ultimately, I’m worried about losing my kidney,” she said, adding that the long-delayed legislation could solve the problem. “I think they should pass it, like, yesterday.”
The six-week trial was the first of many lawsuits against pharmaceutical companies over what role they played in the opioid epidemic, and the outcome is expected to set the bar for the ones that follow. The judge says he anticipates taking about a month to reach a decision in the case.
Opinion writers weigh in on these health care issues and others.
Three years ago, Corey Walsh, who was in a relationship with a man who was HIV-positive, got a prescription for Truvada, a drug approved by the Food and Drug Administration to prevent infection with the virus that causes AIDS.
Walsh, then 23, was covered by his parents’ health insurance policy, which picked up the cost of the drug. But the price tag for the quarterly lab tests and doctor visits he needed as part of the prevention regimen cost him roughly $400, more than he could afford.
“I went back to my physician and said, ‘I can’t take this anymore because all these ancillary services aren’t covered,’” Walsh recalled. He ended up joining a clinical trial that covered all his costs.
Walsh’s experience with high out-of-pocket costs, whether for medication or related services, is common, advocates say. Last month, the U.S. Preventive Services Task Force recommended that clinicians offer prescription pre-exposure prophylaxis, or PrEP, to people at high risk of contracting HIV. The decision by the independent group of experts means that starting in 2021 most health plans are required to cover drugs that are recommended to prevent HIV, and patients can’t be charged anything out-of-pocket for the medication.
But the recommendation doesn’t apply to the other clinical and lab services people need if they’re on PrEP, according to task force officials.
In addition to the ancillary charges, other roadblocks persist for people who need PrEP from getting it.
“Eliminating cost sharing will undoubtedly expand access to individuals for whom affordability has been a significant barrier,” said Amy Killelea, senior director of health systems integration at NASTAD, an organization representing public health officials nationwide. “However, scaling up access to PrEP to individuals who need it most — including young, gay, black and Latino men — will require addressing other major systemic and structural challenges, such as stigma and provider awareness and willingness to prescribe PrEP to their patients.”
President Donald Trump has emphasized the need for more efforts to fight the HIV epidemic. In his State of the Union address in February, the president vowed to eliminate HIV transmission by 2030.
Currently, Truvada for PrEP, made by Gilead, is the only drug approved to prevent HIV. The once-a-day pill is at least 90% effective in some high-risk groups, including men who have sex with men as well as heterosexual men and women who have sex with HIV-positive partners, and 70% effective in people who inject illicit drugs.
Gilead estimated that 200,000 people now receive Truvada. The Centers for Disease Control and Prevention estimated that in 2015 there were 1.1 million people in the United States who could benefit from PrEP.
With a monthly price tag approaching $2,000, many private health plans have put the drug in a specialty drug tier with high copayments or coinsurance. Those payments will disappear when the task force recommendations take effect in 2021.
Truvada is generally covered in state Medicaid programs, as is the required clinical and lab work. But in the southern part of the country, where many states have not expanded Medicaid under the Affordable Care Act and HIV infection rates are high, there may be less access to the medication and other services.
Gilead offers a medication assistance program for uninsured people and a copay assistance program for those with private coverage that can fill gaps.
Gilead has submitted another HIV drug, Descovy, for FDA approval for PrEP, and a generic version of Truvada is expected next year.
It’s unclear how these options might affect people’s access to and ability to afford PrEP.
“Often it takes more than one generic for the price of a drug to drop,” said Jennifer Kates, a senior vice president at the Kaiser Family Foundation. (KHN is an editorially independent program of the foundation.)
The new preventive coverage requirement may lead to private insurers or Medicaid programs trying to limit access by imposing prior authorization requirements, some advocates worry. Insurers might, for example, require doctors to show that the patient is HIV-negative and meets the risk criteria before approving the prescription. That can have serious repercussions.
“Anytime there’s a delay at the pharmacy or on the provider’s end, patients will give up,” said John Peller, president and CEO of the AIDS Foundation of Chicago.
Happy Friday! If you want a smile after this long week, be sure to check out today’s Google Doodle. I feel like this is the right crowd to appreciate it.
Now on to what you may have missed!
The latest challenge to the health law was a long-shot case, with legal experts writing off its chances of prevailing at the start. The suit can be perfectly summed up by a question from Judge Jennifer Walker Elrod, one of the three judges who heard oral arguments on the case in New Orleans: “If you no longer have the tax, why isn’t it unconstitutional?”
Judge Kurt Engelhardt also asked why the Senate hadn’t sent a lawyer along with the House counsel to convey that the congressional intent had been to keep most of the law. “They’re sort of the 800-pound gorilla that’s not in the room,” he said.
Despite some blunt questioning, though, it’s not clear where the judges will land on the final decision. The case could end up in front of the Supreme Court right in the heart of the 2020 election cycle. Considering that the “we’re the side protecting all those popular health law provisions” argument was at least partly credited for Democrats’ blue wave in the midterms, the timing of the case could have deep political ramifications for Republicans.
If the law is overturned, the far-reaching ripple effects would go far beyond politics. It’s not just that 21 million people could lose health insurance, or that the protections for people with preexisting conditions would go away or that insurers would no longer have to cover young adults on their parents’ plans. So many of the Affordable Care Act’s directives have become ingrained in daily life that it’s as if many people forget they’re tied to that hot-button “Obamacare” topic.
On that list? Calorie counts on menus, lactation rooms at work, transparency for gifts from pharma companies to doctors, YMCA courses that teach diabetes maintenance, etc., etc.
Also on that list? A wonky provision that grants HHS “innovation” authority. The reason it’s important? President Donald Trump is using that very authority (that’s part of the law he’s trying to get overturned) to make big promises on revolutionizing the kidney care marketplace.
(Pardon my detour from the courts for a minute, but that’s an impossible-not-to-utilize segue for the other big news of the week, and I’m going to jump on it.)
Trump announced an extremely ambitious plan this week to upend the kidney care world. Currently, the marketplace relies heavily on patients getting care at large dialysis clinics, even though at-home options are both safe and cost-effective. But those big chains can pull in $24 billion a year in revenue, so I somehow doubt that they’re going to go gently into that good night. Another part of the plan would incentivize kidney donations with reimbursements for lost wages and child care to try to address the country’s shortages. (And a special shoutout to Politico for the scoop on the plan.)
And now back to our court news: Trump’s strategy to curb drug prices sustained the first of two significant blows this week when a federal judge ruled that the administration can’t force companies to put prices in their TV ads. Judge Amit Mehta dodged the tricky First Amendment debate and instead focused on HHS’ authority (or lack thereof, really) to enforce such a rule. His ruling was, essentially: Hey, high drug prices are the pits and this might be an effective tool. But HHS can’t do more than Congress has authorized.
The second punch came Friday when the administration pulled the plug on a signature proposal to eliminate drug rebates for pharmacy benefit managers (the target du jour for ire over high prices). Policy experts had worried the rule would lead to higher premiums for Medicare beneficiaries. Insurers and PBMs were popping the champagne over the announcement, while the general consensus is that pharma companies should now be braced for (an even bigger) storm headed their way.
The 2020 Democratic candidates were busy bees this week:
— Sen. Elizabeth Warren (D-Mass.) announced an immigration plan that would include the creation of a DOJ task force to investigate complaints of abuse and neglect from detainees.
— Sen. Kamala Harris (D-Calif.) wants to take on the epidemic of outrageous rape kit backlogs. The kits can sometimes sit in police departments, which are strained for resources, for years. Harris has some bona fide experience to back up her plan. When she was California’s attorney general, her Rapid DNA Service team said it cleared all 1,300 untested rape kits in the state’s backlog in one year and earned national recognition and grants for its efforts.
— Sen. Amy Klobuchar (D-Minn.) released a proposal to tackle a wide range of problems that affect Americans’ seniors, from high drug costs to Alzheimer’s research to long-term care issues.
— And Sen. Bernie Sanders (I-Vt.) is hopping on a bus to Canada with a group of Americans in search of cheaper insulin. This isn’t his first time embarking on such a trip. Twenty years ago, he went north with a group of breast cancer patients with a similar goal. (That two-decade gap between the trips speaks volumes, doesn’t it?)
As we’ve seen in recent weeks, nearly all the Democratic candidates support the idea of providing health care to people who are in the country illegally. But what exactly would that entail? For one, it would place the U.S. even further left of progressive countries who already have universal health care. Most of them have at least some restrictions in place. But experts say that not only in the long run could providing care for them save money — immigrants in the country without legal permission tend to be young and relatively healthy and underuse available care.
Meanwhile, California is charging forward to become the first state in the country to offer Medicaid coverage to residents below the age of 26, regardless of their immigration status.
Speaking of Medicaid, New Hampshire pumped the brakes on its new work requirements following reports that more than 17,000 people (yes, you read that right) would be found to be noncompliant with the rules after its first month. The state has been making the rounds with mailings, phone calls and even a door-knocking campaign, but officials still suggest the problem is that most people aren’t aware they need to report their hours. The experience mirrors Arkansas’ (almost down to the exact number of people who would be booted) and highlights the inherent obstacles states face when putting such rules in place.
A mother whose 19-month-old daughter died after being detained by ICE spoke at a House hearing this week about reports of the inhumane conditions at the facilities. “The world should know what happened,” Yazmin Juárez said during deeply emotional testimony. The name of the hearing — “Kids in Cages: Inhumane Treatment at the Border” — set the tone and reflected the state of affairs on Capitol Hill over the issue.
About 20% of the nation’s hospice facilities have safety lapses that are serious enough to endanger patients. What does that look like, beyond the dry terminology of an inspector general’s report? Gangrene so bad that a patient’s leg needed to be amputated; maggots burrowing near wound openings; and unnoticed sexual assault. But the report highlights another issue: There’s not much CMS can do about all of it. It would take an act of Congress to give CMS the power to fine the industry’s bad actors.
In the miscellaneous file for the week:
• There are lots of voices in the abortion wars these days. Many of them, though, are from white leaders — on both sides of the issue — while the unique nuances and challenges that black communities face are missing from the debate. For women of color, race is tied to abortion in a way that white advocates rarely have to contend with.
• An alleged mix-up at a fertility clinic that resulted in a woman having two babies who were not related to either her or each other highlights the real pitfalls of human error and advanced medicine.
• On paper, as medical aid-in-dying laws continue to pass across the country, more Americans are gaining control over how they end their lives. The reality looks a lot different, though.
• A Disney Channel star’s death this week highlighted the dangers of epilepsy-linked sleep deaths. Although it is rare, SUDEP is responsible for more deaths than SIDS (sudden infant death syndrome) and yet few people have heard of it.
• A new Secret Service report on mass violence incidents reveals that two-thirds of perpetrators had made threats before the attacks.
• A hospital in Ohio fired 23 employees in the wake of murder charges against one of its doctors in a case related to patients’ painkiller-linked deaths. There are a lot of issues here, but of particular note is how systemic such problems can become. One medical professional might be the root problem, but, at some point, that infection can spread to many interlocking parts within a health system.
And, as election season kicks up, I really don’t blame any of the candidates for grabbing the Purell. Have a great weekend!
Sen. Amy Klobuchar, a 2020 hopeful, announced her proposal ahead of an AARP/Des Moines Register forum in Des Moines. “I believe we owe it to our seniors to make sure they have the care and support they need as they get older, and as president, I will prioritize tackling Alzheimer’s, strengthening health care and retirement security, and reducing prescription drug costs,” Klobuchar said.
Can’t see the audio player? Click here to listen on SoundCloud.
The Affordable Care Act was back in court again this week — this time before a three-judge panel at the 5th Circuit Court of Appeals in New Orleans.
A lower court ruled last December that the entire ACA is now unconstitutional because Congress in its 2017 tax bill eliminated the tax penalty for failing to maintain health insurance. It appeared that two of the three judges — both appointed by Republicans — seemed sympathetic to the arguments made by the plaintiffs, mostly attorneys general from Republican-led states.
Meanwhile, President Donald Trump on Wednesday signed an executive order calling for major changes in how the government pays for care for people with kidney disease, including making it financially easier for people to donate kidneys.
This week’s panelists are Julie Rovner from Kaiser Health News, Joanne Kenen of Politico, Kimberly Leonard of the Washington Examiner and Alice Miranda Ollstein of Politico.
Among the takeaways from this week’s podcast:
- Many people who have employer-based insurance and don’t get coverage from the ACA don’t realize that key protections they now enjoy come from that law. These include provisions such as allowing adult children to stay on their parents’ plan until age 26 and barring insurers from using annual coverage caps or lifetime limits.
- The legal challenge to the ACA by conservative states is a real threat to the law, but the case could still be resolved in a wide variety of ways. It is likely, however, to be appealed to the Supreme Court at some point.
- The Trump administration’s plan to revamp how kidney patients get care appears to have satisfied many different stakeholders and is being widely hailed — except by the two giant firms that profit from clinic-based kidney dialysis and the status quo.
- The administration this week had two setbacks on its efforts to slow the rise in prescription drug costs. A court, ruling on procedural grounds, set aside the government’s plan to require drugmakers to add prices to television ads. Also, the administration announced it is shelving its rule that consumers get some of the rebates from drugmakers that pharmacy benefit managers negotiate for insurers.
- The legal challenge to the administration’s rule that would restrict doctors and other health professionals who receive Title X federal family planning grants from referring women for an abortion has created chaos among those health care providers because the rules have been on and off again. But for groups supporting the right to an abortion, time is the name of the game. They hope to run out the clock and elect a different president in 2020.
Also this week, Rovner interviews University of Michigan law professor Nicholas Bagley about the latest legal threat to the ACA.
Plus, for extra credit, the panelists recommend their favorite health policy stories of the week they think you should read too:
Julie Rovner: The Washington Post’s “Hospices Go Unpunished for Reported Maggots and Uncontrolled Pain, Watchdog Finds,” by Christopher Rowland
Joanne Kenen: The Los Angeles Times’ “Trump Officials Tell One Court Obamacare Is Failing and Another It’s Thriving,” by Noam Levey
Alice Miranda Ollstein: CNN’s “Exclusive: Joe Biden on Obamacare and Medicare for All: ‘Starting Over Would Be, I Think a Sin,’ by Eric Bradner
Kimberly Leonard: Vox’s “Why I Gave My Kidney to a Stranger — and Why You Should Consider Doing It Too,” by Dylan Matthews
Fox News’ “ I’m Becoming a Liver Donor for the Sister I Love, So She Can Live a Long and Healthy Life,” by Ed Henry
To hear all our podcasts, click here.
When Mary Kay Gilbert saw her doctor in May for a skin infection on her leg, she wasn’t surprised to receive a prescription for an antibiotic cream.
But Gilbert, 54, a nurse and health consultant, was shocked when her physician clicked on the desktop computer and told Gilbert the medicine would cost $30 on her Blue Cross and Blue Shield plan.
“I was like, ‘Wow — that’s pretty cool that you know that information,’” she recalled telling the doctor in Edina, Minn.
Allina Health, a large Minnesota hospital network to which Gilbert’s doctor belongs, is one of a growing number of health systems and insurers providing real-time drug pricing information to physicians so they can help patients avoid “sticker shock” at the pharmacy.
The pricing tool, which is embedded in physicians’ electronic health record and prescribing system, shows how much patients will pay out-of-pocket based on their insurance and the pharmacy. It allows the doctor to find a cheaper alternative when possible and start the process of getting authorization for a drug, if the insurer requires that.
The soaring cost of drugs has been front and center in the growing national debate about revamping U.S. health care.
Consumers abandon hundreds of thousands of prescriptions each year at the pharmacy, often because of high prices, jeopardizing their health and often leading to higher costs down the road, studies show.
Experts say the tool can help consumers — who are facing increasing copayments and higher deductibles — learn about cheaper options in the doctor’s office.
Still, doctors have been slow to adopt the technology, sometimes because of concerns about getting bogged down in long discussions about drug costs. Humana, for example, introduced its drug pricing tool to its network doctors in 2015. Today, fewer than 10% are using it, company officials said.
But the tool has serious limitations too. Because price negotiations among insurers, drugmakers and middlemen are often highly competitive and secretive, the tools often don’t have data for everyone. For example, Allina’s works for only about half its patients. That’s because not all pharmacy benefit managers share their data on health plan enrollee costs, and those that do often provide only a fraction of their information.
“It’s a chicken-and-egg thing where doctors don’t use it because they don’t have the data for all their patients, and health plans don’t promote it to physicians because doctors don’t have the technology in place,” said Anthony Schueth, a health information technology consultant in Jacksonville, Fla. “It can be a powerful tool when it works, but at the moment the drivers are not there across the board for widespread adoption.”
At a hearing last month, Sen. Martha McSally (R-Ariz.) pressed a top Trump administration health official about why many patients lack access to information on prescription drug prices at their doctor’s office.
“This is America. Why can’t we have this tool available tool now?” she asked. “The data is out there; the information is out there. What is it going to take to make this happen?”
The technology got a boost last month when the Centers for Medicare & Medicaid Services mandated that all Medicare drug plans embed such a tool in their doctors’ electronic prescribing system starting in 2021.
The details of what consumers spend out-of-pocket for drugs is provided by pharmacy benefit managers, or PBMs. They are the middlemen that negotiate with drugmakers on the prices insurers will pay for the medications and which ones the insurers will cover. So a tool’s usefulness is undermined when key PBMs are not included in the listings.
For example, a drug pricing tool sold by Arlington, Va.-based Surescripts, which is owned partly by the PBMs CVS Caremark and Express Scripts, includes data from those companies, but not OptumRx, a PBM owned by insurance titan UnitedHealth. And the OptumRX drug pricing tool includes Optum data but not that of Express Scripts and CVS.
Demetrios Kouzoukas, who heads the Medicare program for CMS, said he hopes the program’s new drug mandate will spark the industry to provide doctors and patients access to a pricing tool, regardless of their insurance.
“What we are hoping and expecting is that there will be a standard that’s developed by the industry … so that the tool is available in all the electronic health records, for all the doctors and all patients, and spreads even beyond Medicare,” he told McSally at the hearing.
Given the competitive nature of the industry, cooperation does not seem to be on the horizon, some industry officials say.
“I don’t see any chance that there will be a centralized system that will connect all of the plans/PBMs with all of the EHR systems currently in use anytime soon,” said Thomas Borzilleri, CEO of InteliSys Health, a health technology company based in San Diego.
However, the National Council for Prescription Drug Programs, a nonprofit group that helps set guidelines for the pharmacy industry, has been working on standards for a drug pricing tool. John Klimek, a senior vice president, predicts that by next year doctors across the country will be able to use the same drug pricing tool to look up all their patients’ drug costs, regardless of the insurer.
Even without such a standard in place, doctors and hospitals have an incentive to use the tool beyond offering a cost-saving service to their patients: It can save providers money, too.
For example, Allina, which owns or operates about a dozen hospitals and dozens of clinics in Minnesota and Wisconsin, gets a set fee from some insurers to care for all of a patient’s health needs. So the doctors and health system benefit when they can reduce costs and improve patients’ adherence to taking their medication, said Dr. David Ingham, a family doctor also from Edina, one of 600 primary care doctors at Allina using the tool.
“When we prescribe a more expensive medication, we share less revenue from the insurance contract,” he said.
For example, he noted that the tool helped him prescribe inhalers to asthma patients.
“I pulled up one medication I normally use, and it said it would be $240 out-of-pocket, but it suggested an alternative for $20 that was pharmacologically equivalent. I sheepishly asked the patient which we should choose,” he said.
Dr. Norman Rosen, a family physician in Orange, Calif., who is employed by Providence St. Joseph Health System, is one of 800 doctors at the hospital testing the Blue Shield of California drug pricing tool this year. Based on the first few months of use, the tool is expected to save patients a total of more than $100,000 in out-of-pocket costs this year, according to the companies.
Without the tool, Rosen said, it would be impossible for him to quickly know what drugs are covered by which insurers and what the copays are. He said he already has saved some patients several thousand dollars a year by changing their blood pressure and diabetes medications.
“It doesn’t take a lot of time, and this can be an important intervention because one of the fears we have is a patient not taking their medication because it’s too expensive,” Rosen said.
Insulin is a vital drug that some 7.4 million Americans must take daily to manage their diabetes. But its price nearly doubled from 2012 to 2016, leaving some patients with no choice but to turn to black-market drugs or traveling to Canada, where insulin can be 90% cheaper. KHN senior correspondent Sarah Varney reports in collaboration with PBS NewsHour about the skyrocketing cost of insulin — and the trend’s deadly consequences.
This is a transcript of the story:
Sarah Varney: It’s early morning in downtown Minneapolis, and Quinn Nystrom is scrambling to arrange last-minute logistics for the trip to Canada.
Woman: A little nervous out there.
Quinn Nystrom: You and me both.
Varney: The caravan has drawn the media’s eye to a vexing problem that threatens her life and other Type 1 diabetics in the U.S., the exorbitant cost of insulin.
They will cross five states, picking up passengers along the way, all to buy insulin in Canada, where it costs 90% less.
Nystrom: Does everybody have their passport? Is everybody holding their passport up?
Varney: For Nystrom, this quest began years ago, when she was growing up in rural Baxter, Minn. She was diagnosed with Type 1 at 13 and hated being different from other girls at school. But when her parents sent her to a camp for kids with diabetes, she learned she wasn’t alone.
Nystrom: I didn’t get the choice to get diabetes, but I certainly had the choice of how I was going to react to getting diabetes.
Varney: She had dreams of finding a cure for diabetes. But about five years ago, as she was starting her career in public relations, she realized the real crisis: the price of insulin.
Nystrom: When I went to pick up that insulin, it started costing me $200 out-of-pocket, then $300 out-of-pocket. So I just started posting that on my social media and started to get a lot of responses.
Varney: So, Nystrom, once her senior class president and self-described rule-follower, took a different path. She now expedites transfers of black-market insulin.
Nystrom: Thank you so much. This is perfect.
Varney: In her refrigerator is a drawer of insulin donated by good Samaritans. Even with insurance, Nystrom herself pays up to $600 a month for two to three vials of NovoLog.
Nystrom: I don’t care if somebody steals my TV, but if they steal my insulin, I’m in big trouble.
Varney: Between 2012 and 2016, the cost of insulin nearly doubled. Nystrom meets people online who can’t afford insulin, like Abigail Hansmeyer, who turned to this black market a decade ago.
And with a special-needs daughter and a tight budget, a trip to Canada isn’t an option.
Abigail Hansmeyer: There’s costs for gas, food, you know, if you’re needing to stay overnight at the hotel. It’s not a solution for everyone. People that work full time, have children, it’s not a feasible thing. And this is certainly a band-aid on the problem. And it’s not even a band-aid for everyone.
Varney: In Washington this year, lawmakers have grilled executives from the three main producers — Eli Lilly, Novo Nordisk and Sanofi — and investigated price-fixing. But, so far, no bills have passed.
In May, Colorado became the first state to cap monthly insulin copayments at $100. And, in Minnesota, people like Nicole Smith-Holt have pushed for legislation to provide free or low-cost emergency insulin.
Her son Alec, a Type 1 diabetic, died because he couldn’t afford the drug. We met Smith-Holt on the second anniversary of Alec’s death. Her family has made a memorial in their backyard. When Alec turned 26, he was no longer allowed on his mother’s insurance plan, and the restaurant he worked at didn’t offer any.
Nicole Smith-Holt: The lowest plan that we found was $450 a month with a $7,600 deductible. That’s really not affordable.
Varney: Instead, he decided to pay for his insulin over the counter at list price. But the pharmacist told him a month’s supply would be $1,300. With only $1,000 in his bank account, he left empty-handed.
When did you first get word that something had gone terribly wrong?
Smith-Holt: Five days later, I received a phone call from actually my mother, who received a phone call from his girlfriend. He wasn’t answering his door and he wasn’t answering his phone. She could hear the phone ringing in the apartment.
And she just happened — you know, checked one of his windows that happened to be unlocked, and she was able to climb in through his bedroom window, and she found him on his floor, cold and unresponsive.
Varney: Alec’s official cause of death was diabetic ketoacidosis, or DKA, when, without insulin, acid dangerously builds up in the bloodstream. DKA can occur when diabetics ration their insulin. A study found 1 in 4 do so because of cost.
Smith-Holt: I went through a stage where I felt extremely guilty, like I could’ve prevented it somehow, or I should have seen something, or I should’ve known something. It wasn’t long before, you know, my sadness turned into anger.
Varney: In the wake of Alec’s death, Smith-Holt began sharing her story.
Did you think at that point this — Alec’s story — had just been unique, that this had just happened to you?
Smith-Holt: Oh, yes, yes. I thought we were, like, the only ones. And I was reluctant to share the story at first, because I was, like, why would people want to hear, you know, our sad story about Alec passing away?
And now I know why. Every single Type 1 diabetic in the world can picture themselves in Alec’s situation.
Varney: Until prices come down in the U.S., people with Type 1 diabetes and activists like Smith-Holt are making these trips to Canada to stock up on insulin and call attention to the dramatic price difference.
Unlike in the U.S., the Canadian government and many other countries negotiate insulin prices with manufacturers. So they traveled through Wisconsin, Illinois, Indiana and Michigan, adding riders and cars to the caravan. Their reasons for joining were all personal.
Deb Souther: When I was 10 years old, I remember going to the pharmacy, and we bought a vial of insulin for $3. Now I’m paying $380.
Kristen Hoatson: I’m going for my son. He’s 11 years old. He’s had Type 1 diabetes for three years.
Varney: The trip is both practical and symbolic.
Nystrom: I don’t think anybody on this bus would have chosen to go on an 817-mile ride today, but we’re being forced to do this because we’re in a crisis in America.
Varney: In statements to the “NewsHour” and in public testimony, Eli Lilly, Novo Nordisk and Sanofi blame high-deductible insurance plans and payments to pharmacy middlemen for the out-of-pocket costs borne by patients.
For example, Sanofi said: “We believe lowering list prices alone will not necessarily result in lower out-of-pocket costs for most patients at the pharmacy. This is why we have not dropped the list price of our insulins.”
The companies all say they offer coupons and discounts to help defray the price of insulin. The patients we talked to said it was difficult to qualify for these assistance programs.
Some 16 hours later, the bus crosses the border to Canada, arriving well after midnight in London, Ontario.
Nystrom: We made it.
Varney: The next morning, the logistical problems continue for Nystrom. Multiple pharmacies have turned the group away, not wanting the media attention.
Nystrom: The insulin’s here. Let’s go and get it!
Varney: The group finally loads onto the bus and heads off to a local Walmart. At a pharmacy inside, one by one, they fill their prescriptions, some filming on their cellphones.
Nystrom: I can buy nine vials of this for significantly less than one vial.
Varney: The group spent about $2,000 for insulin. The same haul would cost almost $24,000 in the U.S.
To mark the end of the trip, they head to a spot revered by diabetes activists. It was here in London, Ontario, at this house that Dr. Frederick Banting first had the idea that led to the discovery of insulin. That was nearly 100 years ago.
Dr. Banting sold the patent for $1 to the University of Toronto. Pharmaceutical companies started manufacturing the drug that remained cheap well into the 20th century.
And, in Canada, insulin has stayed inexpensive. Nicole Smith-Holt says if she only knew she could have come here for Alec, she would have walked, crawled, done anything to save her son. And in a quiet, painful moment at the Banting house, she left some of Alec’s ashes.
For the “PBS NewsHour” and Kaiser Health News, I’m Sarah Varney in London, Ontario.