Bruce Springsteen and Talking to Mental Health Consumers in Alaska

one of the oldest Russian Orthodox churches in Alaska

one of the oldest Russian Orthodox churches in Alaska

Juneau   Before coming up to help organize the Mental Health Consumers Action Network (MCAN) in Alaska, I only had one request. I wanted to be able to meet and listen to men and women who had experience in the system to hear their issues and ideas for improvements. I wanted to talk to the consumers who would be the members of MCAN.

In my first meeting, about ten of us gathered around a table at Polaris House in Juneau. Polaris House is sort of a mutual support center providing a “safe” space for “people whose lives have been severely disrupted because of their mental illness,” as one of their brochures described their work.

I had heard from state officials about so-called “gaps” in the system, but that was meaningless without hearing what people facing the gaps felt, so once I started asking questions it wasn’t long before everyone around the table weighed in with their views about what needed to be done. This was a language and jargon I didn’t know. People talked articulately about their own situations, bipolar with schizophrenia rising, sounding almost like an astrology prediction or various kinds or mania or disorders in this way or that, but all of them with medication and treatment that were as articulate and powerful – and invisible – as anyone you might pass on the street.

another view of one of the oldest Russian Orthodox churches in Alaska

another view of one of the oldest Russian Orthodox churches in Alaska

One woman spoke of the huge value of something she called a “respite center,” which seemed to be space or half-way house before having to be hospitalized in a crisis. Such centers served as a place someone could go to get right before it was too late. The woman credited the center and her several visits there with allowing her to keep a job as a state employee for more than 20 years even while trying to do her best to manage her illness. Her comments brought hearty agreement. Tragically, this program seems to have been shut down, and worse others complained that the state’s crisis intervention folks used criteria that often blocked people from the few hospital beds that existed, giving them now no place to go, essentially until they got worse.

Other issues came fast and furious, large and small. Mental illness is not a visible disability, and highly treatable, yet there is a stigma attached to it and a public fear in dealing with it. People talked about being fired from jobs once employers found that they had mental health issues. One man counted three times in Juneau alone. Of course this is illegal under the Americans with Disabilities Act (ADA), but without an organization of consumers, employers will get away with this until stopped. Others talked about being denied housing or evicted from housing once their situation was known. Of course the Fair Housing Act bans this, but once again without an organization saying, NO, that’s just the way things go. The meeting was an education for me, and an endorsement of what MCAN was seeking to do.

Alaskan Brown Bear in the lobby of Alaska State Offices Building

Alaskan Brown Bear in the lobby of Alaska State Offices Building

Coincidentally in Juneau I had been reading Bruce Springsteen’s autobiography, Born to Run, while here. The main theme of course is the hard, personal road he followed to become a rock star hero, but the sub-theme that was surprising was Springsteen’s own fight to find stability with his mental health issues. He was clear that he only made it with 30 years of constant therapy and the ability to reach out when he hit the wall and find doctors that were able to perform miracles for him with psycho-pharmaceuticals. He had the money and support to make it, but his issues were such that it was still startling to hear him write off whole clumps of years in his sixties. Yes, not weeks or months, but years.

Too many want to make the homeless man or woman the face for mental illness, but I’d like to be in the crowd hollering, Bruce! And, that’s not crazy. A brochure I picked up from Polaris, rattled off the stats: 46% of Americans will experience mental illness in their lives; 26% will face it in any given year; and 5.8% of Americans will face a “severe” crisis annually. Springsteen also represents because Polaris cites its experience that only a quarter of one-percent (.25%) of the people they serve need housing. This is a big constituency even in the small population of Alaska with an estimated 24000 adults with serious mental illness in the state, and a life expectancy of 25 years less than the general population.

MCAN has its work cut out for it as a membership-based organization, but the issues are there, people are angry, and change is needed, whether we’re talking about on the stage of rock concerts, the house next door, the co-worker in the cubicle down the hall, or on the streets of Juneau.

Totem Pole in the Lobby of Alaska State Offices Building

Totem Pole in the Lobby of Alaska State Offices Building


Please enjoy Bruce Springsteen’s We Take Care of Our Own. Thanks to KABF.


Medical Error is Literally Killing Us

MPP0435770New Orleans     When you go into a hospital or under a doctor’s care, you are literally putting your life in someone else’s hands.  When you’re sick and walk into a hospital, most of us would like to feel better crossing the door, finally we are someplace where someone will know what to do and take care of us.

            It’s a comforting thought, but talking to James Lieber about his recent book, Killer Care:  How Medical Error Became America’s Third Largest Cause of Death, and What Can Be Done About It, on Wade’s World strips away any allusion you might enjoy on that score.  The book subtitle has to almost be the longest ever, but it makes the main point quickly.  After cancer and heart disease, medical error is our largest killer in the United States.        

            We’ve all heard about the mix-ups in hospitals where they operate on the wrong arm or amputate the wrong leg.  Maybe you can’t escape human error, but how about reading the charts and using a marks-a-lot or something.  Lieber says they have made huge progress on this score, but then he remarked that “only” 30 patients a week continued to be wrong footed in this way.   As he talked, I quickly did the math, that’s more than 1500 deaths a year.  Damn!

            By now we’ve all heard the less than cheery warning to be careful going into a hospital because you can get sicker in there than on the outside.  Largely they are talking about the various forms of staph infections that are part of a constant guerrilla war against patients in hospitals.  All of which according to Lieber should be classified as medical error and all of which can be fairly easily corrected, though it takes accountability and care.  Lieber argues that if the federal government’s Center for Disease Control recommendations were strictly followed, this could be shelved permanently, but, sadly, these are just guidelines rather than required or “standard” practice.  Meanwhile he puts this number at 100,000 deaths per year.

            When not writing Killer Care or pieces for Social Policy which excerpts a section in the current issue, Lieber is a civil rights lawyer based in Pittsburgh.  I asked him why there’s not more litigation on medical error.  I would have thought there would be lines miles long in front of courthouses around the country.  Part of the problem is the difficulty of proving malpractice if such doctors and hospitals followed “standard” practice, which may be why good solid guidelines are not regulations.  Lieber did remind everyone that they have the right when they go into a hospital to demand to see the history of the room which would allow them to find out if there has been a backlog of infection there so that they can move elsewhere.  That’s worth remembering!

            Some states have stepped up, and Lieber claimed some of the best protections are in Pennsylvania.  That’s a long way for most of us to travel, but in the meantime, it might be worth reading Killer Care and pushing back on doctors and hospitals to “do no harm.”


Congress is the Undercard, the Real Fight for Healthcare is Still Corporate

imrs.phpNew Orleans   Recently the House of Representatives voted to repeal the Affordable Care Act for something like the 62nd time. They have now almost banned Obamacare from being funded as many times as they have barred ACORN! The more you understand about the continued tug of war behind the scene with employers, hospitals, drug companies, doctors, and insurance companies, the more you realize the political machinations on the front pages are window dressing, just part of the puppet show as the pols are pulled back and forth, up and down by the big players. Not to mix too many metaphors, but they are the weak under-card in this fight, while the heavyweights are the companies punching back and forth for advantage.

Of course we have the scandalous way that some drug companies are trying to play arbitrage with people’s health and hike the prices of rare drugs through the roof, regardless of the body count, not caring about anything other than making Wall Street happy. This situation is so grotesque that Congress may be forced to do something about it. We also have 800 pound gorilla setting on the examining table and continuing to pose the most serious problem, increasingly noticed, but left unattended, and that is the persistent problem that employers did not play fair on Obamacare and have largely squeezed through the loopholes, providing coverage in name only with deductibles, co-payments, and monthly bills all collectively so high that millions of lower waged workers are having to embrace the fines, because actual health coverage on offer is financially out of their reach and unreasonable.

A story in Modern Healthcare about the insurance companies’ tug of war was also depressing and enlightening particularly because the companies continue to play such a huge, daunting role in the exchanges, pricing, and coverage. CMS, the Obamacare administrator, is trying to nail down regulations for 2017, understanding that they need to lock as many backdoors as possible before the Obamas pack out of the White House. They proposed a rule that would require any health insurers to require all insurer networks “to include hospitals and doctors within certain travel times or distances from members. There would also be minimum provider-to-member ratios for some medical specialties. The CMS wanted to make sure consumers had access to enough healthcare providers as more insurers moved to narrow-network products.”

And, that’s when everything hit the fan. The CMS is basically trying to make sure that those who buy into care get a standard package across the country to meet their health needs. The insurers and some of their buddies in the state insurance commission offices, who are most frequently their captive audiences, in some states are crying like stuck pigs. They claim they want to tailor the networks to each state rather than have a federal cookie cutter approach, but the real deal is likely just making a deal that makes the big insurers they are used to currying happier to do business with them. Many hospitals and doctor groups line up with CMS on this one rather than being hammered even harder by the insurance bullies. According to Modern Healthcare some of them even advocate that “the CMS…go a step further and build network standards for appointment wait times.”

Meanwhile hospitals and doctors have their own issues. Doctors employed by hospitals in Oregon have even organized a union because of rough handling by the hospitals. Hospitals are being scored by CMS for service, recovery, and billing and some of the outfits that can’t make the mark are squealing about the scores rather than trying to do better on the tests. Meanwhile hospital requirements for providing affordable care to justify their tax exemptions, enjoyed by many, are still resisting and avoiding any accountability.

My best advice is to not take your eye off of the healthcare fight. It’s a long way from over yet, and any notion that we won, has been gone since the early rounds.


Please enjoy Since You Been Gone by The Heavy.  Thanks to KABF.


Unnecessary Medical Care and Over Prescription by Doctors

cover--310x465New Orleans      I go for a physical annually, like you’re supposed to do.  I basically trust my doctor, largely because she keeps it simple, doesn’t make me do some tests I don’t want, stretches out the EKGs for years, and sometimes forgets to make me, how should I say this, bend over.  To get insurance to pay, they require the calendar to be rigidly followed no more than one year after the last one, which put me having my visit after I came back from Montana in 2014.  Having taken a bit of a dive over a piece of a mountain to fortunately be stopped by a tree, I had a bump still protruding on one leg weeks after the fact, so there I was, and there the doctor was, so what the heck, I asked her about it, rather than just going with Google.  She was worried that it might be a clot in the vascular system and wanted me to immediately, as in that minute, go have an ultrasound to make sure. I tried to push back a bit, and she basically snapped at me that, hey, it was up to me if I lived or died.   Needless to say, I drug my ass across town to a hospital and was lucky to get the test done and find out that it was a problem that only time could heal.

The moral of this story is simple.  Doctors do have a way of getting you to take tests with some unanswerable arguments, no matter what we might think or feel about our health and well-being, so it’s an awesome power, and often unaccountable power.  In this case, she was likely right, and I was undeniably stubborn.

The other side of this problem is the fact that doctors and their institutions have until recently had huge incentives to order tests by the truckload.  Dr. Atul Gawande writing in The New Yorker recently reported that “thirty per cent of healthcare spending, or some seven hundred and fifty billion dollars a year” is waste.  In painful detail, he documented the vast number of tests that are simply useless and not even predictive in determining the problems at hand.  He noted elsewhere that “twenty-five to forty-two per cent of Medicare patients received at least one of…twenty-six useless tests and treatments.”  Maybe that’s not painful to read, but reading the whole article about surgeons seeing something as successful, simply if someone lived through the operation, regardless of whether or not it prolonged life, much less added quality to life, was just heartbreaking in addition to stupid and wasteful.  What happened to the Hippocratic Oath’s requirement for doctors to “do no harm?”

Gawande, some six years ago, had written a path breaking piece on Brownsville, Texas and why it was the most expensive place for medical treatment in the country.  The good news in this report is that his earlier article – and important new incentives provided by the Affordable Care Act to allow doctors and healthcare facilities to share hugely in sharing in the savings – had shamed and shuffled them into doing better.  This needs to catch on around the country!

In the meantime, having read all of Gawande’s pieces in The New Yorker and earlier his recent book, Being Mortal: Medicine and What Matters in the End, the only thing I’m one-hundred percent clear about it is that as much as I like my doctor and have learned to live with her, I have to admit that I wish Gawande would be my doctor whenever I come to have a serious problem.  Not having that, I hope I end up with a doctor who has read his stuff and drunk his Kool-Aid.   In fact I wish that for all of us!
10cc – The Hospital Song


Using Local Property Taxes to Push Hospitals on Charity Care

shriverNew Orleans      John Bouman, the President of the Sargent Shriver Poverty Law Center based in Chicago was my guest on Wade’s World recently on KABF/FM talking about a number of subjects but especially the handles for pushing nonprofit hospitals to provide care for lower income families as part of their nonprofit status and especially their federal tax exemptions under the 501c3 classification of the Internal Revenue Service.  He continues to have hope that the Affordable Care Act can decrease inequality and particularly can advance racial equality since African-Americans and Hispanics have gotten such short shrift from the health care system of the country.  He argued vigorously, and correctly, that the Affordable Care Act was the most significant piece of social legislation passed and implemented over the last fifty years.

Bouman mentioned that in Illinois, thanks to unions and community pressure including from the old ACORN affiliates, they had enjoyed a version of the new national rule that forces nonprofit hospitals to actually deliver more free and reduced price health care to lower income families for some years.  Their rule seems like it might even be a model for best practices for all of the hospitals now under the federal mandate to produce a rule that would allow them to keep their tax exemptions.  The Illinois standard is transparent.  A family would be eligible for such care at 200% of the poverty level.  I like a “no ifs, ands, and buts” standard, and that’s what we need to push for everywhere.  The Illinois standard also was clear about remedial practices before more strenuous collection efforts.

Almost in passing, Bouman mentioned that in Illinois the state and some cities and counties also had the ability to punish hospitals that were scofflaws on the act or really just wolves in the sheep’s clothing of nonprofits.  I asked Bouman how could they do that, and he said of course they could take away any local or statewide property or revenue tax exemptions or allowances that they were getting as nonprofits with their charitable status.  Whoa, I thought!  We had overlooked the obvious handle there that could help us bring the fight to a very local level.

In Louisiana, where we might not have a chance with the state, the local assessors at the parish or county level are elected and often very close to the ground in terms of their responsiveness to community pressure and organizing.  Furthermore, there are absolutely property tax exemptions enjoyed by all of the big, and many of the small, tax exempt organizations from the huge outfits like the universities and colleges as well as the small housing operations holding properties for development.  Immediately, I could see organizationally how we could challenge a host of property tax exemptions that are worth millions.

In Arkansas, a quick look comes down to a test of how “public” the service or facility might be.  My point is that in each state and in many local jurisdictions there might be handles available to increase the pressure for hospitals to do right. The fight itself might be enough to force some change, as we have already seen in the reaction of St. Joseph, Missouri’s Heartland Hospital and its jump to attention when they received an inquiry from Iowa’s Senator Charles Grassley asking them to defend their exemption given their collection practices.

It might be one thing for nonprofit hospitals to turn their backs on community organizations and unions asking about their policies and asking them to do better, but it would be a whole different problem if they had to defend such inadequate programs and cutthroat collection efforts in public before a board of adjustment, an assessor, a tax equalization board or any other public forum.


Please enjoy The Danielle Nicole Band’s You Only Need Me When You’re Down, thanks to KABF.


Salud Promodores, Barefoot Doctors, Home Health Workers, and Iranian Health Houses Come Knocking

Healthcare Workers in Iran

New Orleans   In organizing the process of strengthening weak ties to build the strong welds of solidarity can be very personal, tediously time consuming and therefore prohibitively expensive, and involve huge scale human engineering in order to create deep organizations, which is partly why organizers use other tools like actions and demonstrations to achieve scale and create polarization.  There’s no better or more intensive process than home visits, the door-to-door work that was the ACORN hallmark.

For a long time I have found it fascinating the way similar systems have been successfully adapted in developing countries to provide health care, particularly preventive care.  In Lima and elsewhere many of our organizers were originally salud promodores or health promoters, similar to home health aides doing outreach.  In fact when I was consulting with Casa de Maryland they had an excellent program working among immigrant populations in the suburban counties outside of Washington, DC.  The role of barefoot doctors, who were home health organizers after the Chinese revolution, was well regarded and carefully studied in my generation as both hopeful and inspirational.  The huge explosive growth of home health workers in the USA was more about cost saving than prevention or intervention, but there’s no doubt that when the service worked it allowed better health and independence for millions.

It wasn’t surprising to that Dr. Aaron Shirley, a veteran doctor and civil rights activist in Mississippi, would be attracted to these kinds of programs in dealing with the persistent, scandalous, and tragic heath care crises in Mississippi, but the New York Times Magazine feature advocating a move to an Iranian model of health houses or mini-clinics serviced by promodores of sorts was fascinating.

The Iranians built ‘health houses’ to minister to 1500 people who lived within at most an hour’s walking distance.  Each house is a 1000-square foot hut equipped with examination rooms and sleeping quarters and staffed by community health workers – one man and one or more women who have been given basic training in preventive health care.  They advise on nutrition and family planning, take blood pressure, keep track of who needs prenatal care, provide immunization and monitor environmental conditions like water quality.  Crucially, in order to gain trust, the health workers come from the villages they serve.

All of that seems to make enormous good, common sense.  The article drifts a little towards the direction of being a solicitation for government or private funds for the $3 million the Mississippi organizers and advocates want to build 15 such “health houses” over three years, but it makes me wonder why this wouldn’t be a vital system in not only rural areas, but also cities, and why with some energy and ingenuity and community support versions of this couldn’t be created by community organizations using the talents all around them.  Given the costs of health care, the shrinking of the safety net, and the fact that it’s life-or-death if we don’t start embracing preventive care and create a real ground-level health care system, it seems like it’s worth some thought and work for community organizations to adapt something similar and do so PDQ.

salud promodores training