by Art Levine
There are successful approaches that don’t use antipsychotics for dementia patients. They’ve been achieved by training the nursing home staff to respond in a comforting manner to even the most troublesome dementia and Alzheimer’s patients with dignity, flexible schedules based on patient preferences and empathy; if they’re in pain, they’re given sensible doses of non-opiate painkillers or opiates. The pioneer of this holistic model is Vermillion Cliffs, the dementia unit of the Beatitudes Campus retirement community in Phoenix, Arizona, as profiled by The New Yorker and The New York Times.
There’s little reason to have faith in such a major turnaround in practices nationwide. That won’t happen unless pressure builds on CMS to stop paying for “worthless” medicines, to start rewarding nursing homes for actually using gentler alternatives that can’t be gamed by sham regulators, and to ensure that the HHS’s Inspector General punishes violators of corporate integrity agreements.
There is one organization that could possibly bring about such a tectonic shift in federal policies and help halt those needless deaths. That is the thirty-eight-million-strong AARP, the powerful senior citizen group that is ostensibly a strong force for protecting the elderly and their benefits. Their power to shape Medicare actions and federal legislation and the views of politicians is so legendary that Medicare has become known as the “third-rail” of American politics: touch it and you die.
Until recently, though, this organization has been relatively quiet on the life-and-death issue of antipsychotic use in nursing homes. “I don’t know why they haven’t done more,” says CMA attorney Toby Edelman. “Maybe it’s because of their ties with the insurance industry?” AARP has been accused before by both liberal and right-wing groups of being too cozy with the insurance industry and, by extension, Big Pharma, which reaps so much in revenue from government programs, while AARP’s licensing deals with United Healthcare allow it, indirectly, to rake in a share of federal spending on antipsychotics. Surprisingly, with more than $1 billion in revenues, over half of AARP’s income has come from royalty payments from United Healthcare and non-health insurance companies for licensing the use of its respected name for prescription drugs and other plans.
Ever since AARP sided with Big Pharma during the passage of the industry-crafted Medicare Part D plan in 2003, which barred Medicare from negotiating prices and created a huge “donut hole” of thousands in uncovered costs, the organization has come under fire for placing business interests over the needs of its members. As the public interest group Public Citizen declared, “Maximizing corporate-related income and profits poses a significant conflict of interest for an organization trying to represent the best interests of its members.” The organization’s former policy director, Marilyn Moon, told Bloomberg News and the fact-checking news source Politifact that these potential conflicts undermine its mission: “There’s an inherent conflict of interest. A lot of people there are trying to do good, but they’re ending up becoming very dependent on sources of income,” she said. “It’s very hard for the tail not to wag the dog.”
Organization officials deny there are any conflicts, and a spokesperson insists, “AARP has done a great deal to raise public and policy-maker awareness.” He pointed to recent AARP legal actions, a 2014 AARP Magazine article on overdrugging, some state testimony—and polite written requests to CMS starting in March 2014 that asked for greater education on antipsychotics and stronger informed consent procedures. But none of it has yet made an impact on federal policy-makers. That mild 2014 letter, apparently AARP’s first public comment on the issue to a federal agency, accepted CMS’s feeble partnership with the nursing industry and its dubious statistics as a good start that should be expanded. The organization, though, didn’t press for any stern measures that could slash drug and insurance industry revenues.
The organization simply hasn’t mounted a full-scale attack on overprescribing at the top agencies of the federal government, or pushed for awareness through congressional hearings and TV ads or sought stepped-up enforcement through new laws. Here’s a thought experiment: If CMS had a new policy that somehow no longer funded Medicare-paid kidney dialysis machines after two weeks, killing thousands, we’d probably hear about it loud and clear from AARP—and heads would roll in government agencies. That’s not the case with antipsychotics.
Even so, starting in 2012, AARP joined an important, successful local class-action lawsuit seeking to enforce informed consent laws in Ventura County, California, nursing homes. Over three hundred current and former nursing home residents weren’t told about the psychotropic drugs they were getting or the dangers they posed, and, as a result, some patients were needlessly injured or died.
As a result of the lawsuit, the Ventura County Superior Court granted a groundbreaking order in 2014 demanding that the nursing homes implement strict informed consent policies. Though promising, that change won’t spread more broadly until the drug industry’s influence on antipsychotic spending is choked off at the top of the federal government. And that won’t happen until the preventable drug-induced deaths of the elderly become as politically and financially dangerous to politicians, government officials and drug industry executives as AARP has made messing with Medicare in the world of politics.
CHAPTER 3
The Secret History of the VA’s Tragedies in Tomah and Phoenix
OVERMEDICATION HAD SURELY KILLED REBECCA RILEY, OTHER FORLORN children and anonymous nursing home patients. After a burst of local headlines, one could have hoped that there would have been a cry for justice and genuine safeguards. But that crackdown never happened. Instead, over the years, no one paid much attention to a wave of preventable deaths and harm caused by irresponsible, unchecked prescribing across the country. That started to change in early 2015, following the news that more than thirty patients had died needlessly at the VA hospital in Tomah, Wisconsin, that came to be known as “Candy Land.”
This and other VA scandals are emblematic of the nation’s entire mental health system. The documents, hearings and investigative articles exposing the array of VA scandals have offered the most detailed behind-the-scenes look at failed mental health care since the abuses of the state mental hospitals came to light over sixty years ago, but even pro-VA experts who concede some of the VA’s failings say that civilian mental health care is far worse. Take senior RAND Corporation researcher Dr. Katherine Watkins, a psychiatrist who has published influential studies that found that the VA significantly outperformed the private sector on a key quality marker: appropriate prescribing for mentally ill patients. Watkins, while acknowledging the scathing conclusions of some damning independent reports on the VA’s failures, told me, “Even if they do have a corrosive culture of care, even if they do have inadequate oversight and accountability, even if they do have ambiguous [clinical] policies, even if all of those things are true, they’re still doing a better job than the private sector.” That positive comparative conclusion was echoed in RAND’s broader 2016 congressionally mandated assessment of the VA’s overall quality. Despite shortages of qualified mental health staffers, RAND’s assessment, which was later confirmed by a federal Commission on Care studying the VA, found “The quality of care provided by the VA health system generally was as good as or better than other health systems on most quality measures”—even though there are wide inconsistencies among VA facilities.
Looked at another way, this means that the scandal-ridden VA is actually a microcosm of what’s wrong with the nation’s mental health care at large, the difference being that we know far more about the VA than what’s going on in Medicaid, nursing homes or foster care programs. Keep this in mind: the maltreatment suffered by these veterans could be an improvement over what is inflicted daily on many of the millions of mentally ill people seeking quality care everywhere from emergency rooms to community clinics, but those services haven’t gotten the same intense congressional and media scrutiny as the VA.
So the story of what went wrong at the VA, from deadly
wait times to veterans killed by reckless prescribing, should be more than just fodder for an ideological debate over the role of government-run health care. Liberals have sought to portray the VA’s problems as overblown, as Hillary Clinton argued on MSNBC’s The Rachel Maddow Show: “It’s not as widespread as it has been made out to be.” Citing some statistically questionable surveys showing veterans’ satisfaction with VA care, she said, “Nobody would believe that from the coverage you see, and the constant berating of the VA that comes from the Republicans, in part in pursuit of this ideological agenda they have.” It is indeed true, as reported in a 2016 article in The Washington Monthly, that the far-right Koch brothers, Charles and David, are subsidizing a pro-privatization agenda—one that aims to essentially replace the VA over time with vouchers for private care—through the conservative Concerned Veterans for America (CVA), part of their network of right-wing organizations. The financiers’ pro-business privatization goals were supported by several members of the independent VA Commission on Care who were appointed in 2015 by the White House and congressional leaders.
Sweeping reforms of the VA were seen as a real possibility after Trump’s victory, but how far they will go is still an open question. Donald Trump won the veteran vote by a two-to-one margin over Hillary Clinton because his promises to “drain the swamp” in Washington resonated with veterans fed up with failed VA reforms. But his actual reform ideas don’t seem as extreme as the privatization agenda that ultimately aims to close VA hospitals and enrich corporate health care; he has proposed at times a Medicare-style option for veterans to choose freely between VA or private sector care, but that’s a position that alarms mainstream veterans groups that argue it would drain resources from the VA and steer veterans away from the agency’s specialized, integrated care. He also sought to fire “corrupt and incompetent VA executives.”
Yet to some whistleblowers and other critics of the department, his selection of Dr. David Shulkin, a VA insider who is also not a veteran, to head the agency makes drastic, genuine change less likely. “For veterans who voted for Donald Trump, this is going to feel like a ‘bait-and-switch,’” says Benjamin Krause, founder of the reform website DisabledVeterans.org. He argues, “Keeping Shulkin will keep a host of flunkies and criminals who should have been part of the whole ‘drain the swamp’ promise.” At the same time, Shulkin, as VA Secretary, has been praised even by some internal department critics for making progress with his announced reforms; he has also demonstrated a shrewd sense of public relations by moving to remove a few scandal-ridden VA hospital directors hit by national publicity and to improve transparency about the wait times at local facilities. Yet he has done little about lesser-known, appalling health care scandals and the ongoing retaliation against whistleblowers that have continued unabated since he joined the department as undersecretary of health in June 2015. As Krause points out, “I don’t know of a single instance when a VA employee has been held accountable for harassing whistleblowers.”
Many liberals have discounted the VA scandals as merely some right-wing or media fabrication. Yet that stance ignores a mountain of damning reports by the VA’s own Inspector General, the GAO, reputable news organizations, congressional committees—and, especially, the tragic stories of patients, families and dedicated VA workers victimized by the agency. The VA can’t truly be reformed if it becomes just a political football for ideologues.
Less than a year after the dozens of wait-time deaths at the Phoenix VA medical center were first exposed in April 2014, the Center for Investigative Reporting revealed another crisis that won far less national attention: The Tomah VA hospital’s chief of staff, psychiatrist Dr. David Houlihan, had recklessly overused opiates and psychotropic drugs. For years, Tomah hospital executives had brushed aside complaints, just as there was little response to the deaths of nursing home patients and foster care kids enrolled in other government-funded programs. Now, finally, a few national reporters began examining at least one government agency’s role in sanctioning dangerous prescribing.
But as interest faded away, reform seemed unlikely. The few laws that passed left the agency’s underlying corruption, as exposed in congressional hearings and media accounts, unchanged. And few people noticed that the roots of these new scandals lay in the medication-linked deaths of young vets such as Eric Layne in 2008, and shoddy, neglectful patterns of care. The failure that undergirds the prescribing scandals was no mystery. As Paul Sullivan, then the executive director of Veterans for Common Sense, observed a few years ago: “There’s such a lack of mental health care services that service members are not treated, or their treatment is delayed, and they’re only given drugs instead of the therapy they need.”
The VA could have changed its approach to prescribing or provided broader, effective mental health care. Instead, it retaliated against the whistleblowers at Tomah, Phoenix and other hospitals. Rigged data, cover-ups of patient’s deaths, long delays in accessing treatment and a lack of accountability were rampant. As whistleblower Ryan Honl, a secretary in the mental health unit at Tomah who quit his job in October 2014 and went public about abuses, points out, “All sorts of crazy, off-label stuff was going on to the point where people were dying, but Houlihan was never held accountable.”
The VA knew about the overprescribing problems at Tomah as early as 2007, but the Inspector General didn’t start investigating the alarming narcotic prescribing until 2011. He found that dozens of victims had “unusually high” opiate prescription rates and that staff dissidents were retaliated against for more than two years, including a psychologist who killed himself in 2009 after being fired for protesting overmedication. Yet the resulting March 2014 report was buried and nothing changed.
The congressional proposals to tighten prescription oversight came too late for those killed by medications at Tomah. Many of the patients had histories of addiction and some had histories of chronic pain. At a good hospital, a pain specialist would oversee their treatment. Yet at Tomah it was a psychiatrist, Houlihan, nicknamed “The Candy Man.” A few months after the IG deep-sixed its investigation, a thirty-five-year-old inpatient in the Tomah mental health unit was found in his hospital bed dead from fatal poisoning caused by the sixteen medications his doctors had prescribed.
There were other problems. As Honl discovered when he faced a spurious internal VA police investigation long after he’d quit, “The system was slow to respond but quick to silence those who raised concerns.” Nevertheless, Dr. Carolyn Clancy, the VA’s interim undersecretary for health, declared to a joint House-Senate field hearing in Tomah in March 2015: “The VA will not tolerate an environment where intimidation or suppression of concerns occurs.”
Today, “the VA is killing veterans and it’s a national disgrace,” says Honl of the agency’s failure to effectively curb its life-threatening practices, augmented by its pattern of continuing retaliation against whistleblowers. (The VA has diagnosed 60 percent of all veterans returning from the Middle East with chronic pain, plying many with opiates, even as such VA opiate prescribing has dropped about 25 percent since mid-2012.)
Yet even though the Inspector General had buried its March 2014 Tomah report, denying reality was no solution to the hospital’s problems. It only increased them. In August 2014, a thirty-five-year-old Marine veteran, former Lance Corporal Jason Simcakoski, died of “mixed drug toxicity” in the VA hospital’s inpatient psychiatric unit. He had just been following doctor’s orders. He was already taking fourteen different medications, including high-risk opiates, benzodiazepine tranquilizers and the sedating antipsychotic Seroquel. Just two days before his death, Jason was also given the opiate Suboxone, typically used to reduce dependence on other narcotics. This extreme drug cornucopia was given to him despite the well-known dangers of Suboxone’s potentially fatal interactions with any of the three benzodiazepines he was taking, Valium, Restoril and Serax, and with some of his other high-risk medications. “They don’t value life at the VA,” says his widow, Heather Sim
cakoski. Over the years, she says, “They took the quickest, easiest route of giving pills to patients with addictions to keep them quiet, and then send them out the door.”
Jason was an addict. Yet the VA kept shipping opiates and benzos and antipsychotics by the bagful. After a near-overdose, Heather turned to Jason’s father, Marvin, to begin driving over each day to bring Jason his medicine, which Marvin kept in a safe to ensure that Jason took only the number of pills prescribed him daily. Marvin also became a dedicated advocate for his son’s well-being in the face of the hostility, indifference and neglect of the local VA. But the doubts of Jason’s family about the “treatment” he received mounted, worsened by the apparent lack of any personalized counseling given him during the twelve years he was a VA patient before his death, except, possibly, during some of his hospital stays.
About four years before his son’s death, Marvin argued with his doctors about his son’s overmedication, but his views were dismissed as ignorant second-guessing. “I was always told that I wasn’t their patient, even though I was his dad who truly cared about him a lot more than they did!” he told the joint congressional field hearing in Tomah less than a year after his son died, his voice quaking with an anger and pain that was still raw. “What I would like to know is if Jason was their son, would they have had him on all of these meds?” He adds now, “I truthfully don’t understand why if he was addicted, they gave him whatever he wanted. When I was giving him his meds, I stood my ground.”
Jason, a Marine and athlete, had lost his drive and self-esteem under the prescription barrage. His weight ballooned from 180 to 250 pounds, and he was too ashamed to go into a restaurant on those rare days he went into town, careful to order only from drive-thru windows. Near the end, he couldn’t even bend down to tie his shoes. “With all these medications, he went downhill real fast,” his father says.