Tag Archives: Healthcare reform

Fake Medicaid or No Medicaid? Don’t Buy It


Governor Bentley has persisted in failing to offer hope for the uninsured poor in Alabama, through a Medicaid Expansion or otherwise. Behind the scenes, various insiders are passing rumors not to worry—he really will do it… after the primary. Or after the general election. If the rumors are true, the plan is to apply for a “private option” style Medicaid waiver similar to programs in Arkansas and a handful of other states, and he is making people wait for his personal political interests, without regard to their present needs. If the rumors are not true, one can imagine he might benefit from public perception that he is simultaneously accepting and declining the Expansion.

One of the candidates in the Democratic Primary, Parker Griffith, got supporters by promising to expand Medicaid. Now he has revealed his grand idea: private option Medicaid, the same type of program Governor Bentley is/is not planning.

Except it isn’t such a grand idea.

Private option Medicaid is Fake Medicaid. One writer called it “Conservatives’ Awful New Medicaid Ploy”—and it isn’t even conservative. It is just a way to siphon off federal and eventually state money into private pockets, away from providing needed healthcare. Instead of simply directly adding people to the existing state Medicaid program, to be funded mostly by federal money and with generally about 3% overhead, it uses those funds to purchase private insurance at significantly higher overhead and for profit. It’s a skillful bit of flim-flammery to convince conservatives that this is anything but a scam and liberals that it is the only choice—fake Medicaid or none.

These “new” – what scam is ever really new?—programs don’t just eat up healthcare funds.  They have to limit health services to turn a profit. How?

By charging people with no money premiums and/or co-pays, so they will be discouraged from applying at all or seeking care if they do. You may think $35 a month for a household premium isn’t much—if you do, you aren’t likely poor enough to qualify for Medicaid. Even $3 can mean the difference between filling a prescription and skipping it.

By adding “wellness programs” of no proven cost-savings, an additional time charge for workers without sick leave. See page xix of a large analysis on workplace wellness programs by Rand: “[w]e estimate the average annual difference to be $157, but the change is not statistically significant.” This doesn’t mean $157 isn’t significant—it means the $157 “difference” is most likely due to chance instead of a difference and could just as easily be a $157 loss.

By charging a fine for coming to the ER for a non-emergency, instead of making sure all patients have 24-7 access to primary care and developing better ways to triage and redirect patients to appropriate settings. By charging $50 for the crime of being sick enough to be admitted to the hospital.

Already, just a few months in, Arkansas is finding out how much this fake Medicaid is going to cost them.  Are we really looking to follow their footsteps? If you haven’t read Confessions of an Economic Hitman, I highly recommend it. I suspect we are currently the target of the same strategy used to bring developing countries into debt, except this time it is on our own soil.

Both Bentley and Griffith were practicing doctors. I find it hard to believe they are completely unaware of the harm a private option Medicaid could do to patients and our state’s economy. Even so, it may be worth your time to tell them.

For those who have decided the fake option is better than nothing, it might not be so. Once people get their Medicaid cards, they will no longer be able to visit free clinics, get charity care, or apply for patient assistance programs for medicines. I am not sure how to predict whether on balance more people will be better off. I can say with a fair amount of certainty that a good many people will be actively harmed. Sometimes a false front for a good thing is actually far worse than nothing.

Fortunately, there is no reason to believe the choice is between fake Medicaid and nothing. We have more options. We can support candidates who are supporting the real Medicaid Expansion. Democrats could consider taking a look at Kevin Bass in the primary. Those who are determined to support Griffith could put pressure on him to drop the fake Medicaid idea. Republicans could put Bentley on the spot, and decide not to support someone who is/is not doing—hasn’t done— anything specific to address un-insurance and its economic damage to hospitals around the state. You can speak up against wasting funds in a fake program.

In that same vein, there’s no real reason we need to keep putting ourselves in the position of choosing between only two parties, between private insurance and nothing, or between all manner of pretend reforms and nothing. Some of you reading this are donating substantial sums or time to a lose-lose game. Are you getting what you’ve paid for?

8 Comments

Filed under Alabama Politics, Bad solutions for the uninsured, Medicaid

Lost in the Marketplace: Thoughts on the ACA Exchange


Like many of you, I have been unable to apply for an insurance policy on the Marketplace that opened October 1.  That was also the start of “open enrollment” at my work, and I was hoping to see if there was a cheaper option for my family available with similar coverage, even though I would not qualify for a subsidy.  I also wanted to be able to give you more detail about the process and possible pitfalls by trying it myself, since I didn’t have time to train as a navigator.  My window of choice closed for a year, and I gave up trying to log in to stay out of the way of those still trying. 

 

Twice, I got a user name and password and was sent an email to complete the registration process.  Although I clicked the email link as quickly as my fingers would go, within 10 seconds of receiving it and 30 seconds of completing the password entry, the healthcare.gov site said I was too slow—sorry, go back to the beginning and try again.  Perhaps I would have had to grow up with video games to get the required hand-eye coordination speed? Maybe it was a subtle way to get younger, healthy and well-coordinated sign-ups first?

 

It is possible to look at the available plans for a given county without registering—in my county, for an individual/ family policy, I would have a choice of BCBS or Humana.  There is no link within the site to provide nitty-gritty details though.  To get those on your own, you have to apply.

 

I’m going to recommend you work with a navigator unless you are very well versed in health insurance policies.  Be very careful of fraud and check the credentials of whoever you are working with.  Here are some factors to consider.  Remember that the 60% cost coverage on bronze policies and 70% for silver does NOT mean it will work out that way for you personally.  All that means is that for a “typical” subscriber, the insurance will pay 60 or 70% of the total covered services after the premium.  From what I am hearing, the costs to subscribers will be front loaded in the form of significant deductibles that must be paid before the insurance kicks in.  I would advise not selecting a deductible of an amount you don’t have already in savings.

 

If you don’t have insurance now, you may be getting some services from a free clinic, discounted/sliding scale service from a physician or clinic, and/or free medications from a Patient Assistance Program.  I know none of these safety net services is ideal and that people with insurance generally have more options than you have right now.  However, you need to know that once you have insurance, these options will no longer be a plan B for you.  You can’t go to the free clinic on a day when you don’t have your co-pay or co-insurance money unless you are going to lie, because the ones I know of only accept uninsured patients. Your doctor or clinic may not be able waive a part of your co-pay or deductible—that is considered criminal fraud in some cases, against their contracts with the insurer.  Every policy I’ve ever had says, in fine print within the manual, that my policy can be cancelled for breaking the contract if I don’t pay my share through co-pays and deductibles.  So you want to check and see if that is in a policy you are considering.

 

Medication co-pays can add up quickly.  If you are getting 4-5 medications through free Patient Assistance Programs, even if they aren’t the most effective ones for your condition—will you have the funds to buy them? Depending on the co-pay tier, you could be shelling out $150 or more a month. If it is possible to view the formularies for the plans you are considering, and find out the co-pays for your medications, I would recommend it.  You need to know that insurers can change their formularies without your permission and without warning.  If you aren’t in an open enrollment period when that happens, you’ll be stuck with it for awhile.

 

If possible, it would be good to look at the provider networks for each plan, for both primary care and specialists you need, and see if they are taking new patients.  Be careful to note if there are restrictions on laboratories and radiology facilities you can use—I have learned there are a couple of new plans that will restrict lab services to only one company, Quest.  You don’t want to go to a non-contract lab for blood work and find out later the bill is fully on you.  If you see mental health providers, check to see if there is a carve-out policy that delegates management to a sub-insurer.  I’ve been told by a navigator this is not an issue with the plans in our county.  These can be a significant barrier to care, in my experience.  Even without a carve-out, check the mental health provider network and ask if your primary care provider can be included—a critical feature to allow initiation of treatment while you are waiting for a mental health referral.

 

If you are uninsured and have significant chronic conditions already being managed through charity services, you may find out that you can’t afford to switch to insurance even with the subsidy and even considering the tax penalty.  Being uninsured is frightening, because the gaps in charity coverage are tremendous and you never know if you will acquire a new condition and be left without help.  At the same time, you do not want to be left unable to purchase ongoing treatment you already know you need.  You don’t want an insurance card you can’t afford to use.  I have seen this happen many times, in person, to families who had insurance and too much income for their children to get Medicaid or AllKids but not enough to pay for services or prescriptions.  It is a difficult decision—don’t make it lightly.

 

If you have no chronic conditions, you may decide it is worth the risk to sign up for insurance.  That’s the function of insurance, as you know—it is a risk pool, where we enter not knowing who will need to use the funds we add to the pot.  We don’t expect to each get back the amount of services we have paid for with our premiums—we don’t even want to, because that would require illness or injury.  The more healthy people who sign up and contribute, the lower the cost for everyone in the pool, and the more total profit for the insurers.  You could be helping other people in your state more than yourself, or they could wind up helping you. 

 

One thing is for sure—we are all, through the forced wealth transfer in the ACA, helping to line the pockets of private insurers and strengthen their position at the lobbying table.  We are taking a large step away from single payer, a public option and even community level grassroots safety nets by doing so.  Ought we to use much time and energy to prop up a plan with such fatal flaws at the core? 

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Filed under Exchanges, Healthcare reform

Poop Happens: New Rules for Alabama Medicaid


In the ongoing effort to squeeze more juice out of the budget turnip, Alabama’s Medicaid office has revised pharmacy benefits.  There are new limits on the number of prescriptions per month for adults, and for all ages, the program will no longer cover any over the counter medications as of October 1.

 

Were you aware our Medicaid program covered some (not all) OTC medications if prescribed?  After all, most private insurances do not, and neither does Medicare.  This is an optional coverage by states—we don’t have to do it, and now we won’t.

 

 Most of the OTCs I prescribe for kids are fairly cheap—for instance, 1% hydrocortisone for mild eczema is under $5 a tube.  Others are a little pricier—polyethylene glycol for constipation is about $12 to $36 for a one month supply depending on the dose.  For most of us, that’s still less than the typical pharmacy co-pay anyway, so what’s the big deal?

 

You’d be surprised how many families tell me, as they are leaving the office, that they can’t even afford to buy ibuprofen to give their children pain relief, or a thermometer, or a bulb syringe to suction a baby’s nose.  Children with Medicaid live at the very lowest income levels, so sometimes there really isn’t $5 or $10 for an OTC medicine.  Sometimes, maybe there is—maybe the household budget is out of line and maybe that $5 was spent on something you might judge wasteful or frivolous.  The problem for the kids is that whether their parents could budget differently or not, many will simply not get their medications unless Medicaid covers them. 

 

I wasn’t the only pediatrician who thought the change sounded like a problem.  Several of us made lists of the most commonly used OTC medications for which there is no good or inexpensive prescription substitute.  The list was submitted by an advocacy organization to our Medicaid agency, along with an explanation of our request to have an exception for these limited items.  A few days ago we got our answer—no.

 

We are told this is because of federal rebates for prescription drugs, not available for prescribed OTCs.  I understand how that would work in general, but not for everything.  1% hydrocortisone, for instance, can be used sparingly on the face for eczema (along with a thick moisturizer).  Stronger prescription steroids are not a great idea on the face for extended use.  So our next step up from the $5 OTC is… pimecrolimus or tacrolimus, priced online at $150 or more.  I don’t know what Medicaid pays and gets back as a rebate, but I’d be surprised if it isn’t a money loser by comparison to the $5 product.

 

One of my friends out of state suggested the decision may also be related to Medicaid’s possible switch to Pharmacy Benefit Managers.  If we go with third party, for-profit PBMs, they make their profit on our prescriptions and would likely object to any coverage of OTC meds.  I’ve asked around and have not been able to find out if PBMs are a factor.

 

Now I’m going to talk about poop, so if you are eating or squeamish, skip to the end.  Pediatricians are bad about poop talk in front of nonmedical people, even at parties.

 

Constipation is a common problem in babies and children—hard stools that not only hurt but can even tear the anus.  I’m talking blood.  Children are scared to poop afterwards—they expect pain and they hold back, resulting in more stool buildup and more pain the next time.  Eventually, this pain/holding cycle can lead to encopresis—large amounts of hard stool in the now dilated rectum with thinner, liquid stool leaking around it and out into the underwear.

 

Parents may think their children are not wiping or are having accidents.  The kids are embarrassed.  It smells bad.  They get called names.  Whenever I see “train tracks” in a child’s underwear, I know I need to do a rectal exam and see what’s up in there.  After diagnosing and explaining the problem, I outline a course of treatment in which we need to get the poop cleaned out and then keep it very soft, like pudding, for several months to avoid new tears and recurrent buildup.

 

Treatment is almost always successful.  OTC polyethylene glycol, PEG, (aka, Miralax is the best thing going for encopresis—both for the initial cleanout and for maintenance.  It isn’t absorbed into the body—it pulls water into the stool to soften it.  When I was in training, we had mineral oil—a chore to coax children to drink even with heavy flavoring, and there were cases of aspiration pneumonia when the oil got into their lungs.  Then we had lactulose—better accepted than mineral oil but not quite as effective as PEG and rarely with significant side effects, including obstruction of the bowel.  We had various fiber supplements, which helped inconsistently.  For cleanouts, we often had to resort to milk and molasses enemas.  Finally we started using PEG.  Kids will drink it, it works most of the time, and there are minimal side effects.  Life for constipated kids got much better. 

 

Now, depending on the dose needed, families may have to spend as much as $36 a month to keep treatment going.  Some will manage to do it, and others will not.  Say whatever you want about what the parents “should” do—if it doesn’t happen, it doesn’t happen, and the kid will be the one with a bleeding bottom.  Or in the ER for abdominal pain.  The number one cause of abdominal pain in children who visit the ER is constipation.  Untreated constipation can lead to urinary tract infections.  It can lead to CT scans and repeated radiation exposures in the ER.  Sometimes we have to admit children for cleanouts, with PEG dripped through a nasogastric tube.  I have had kids who got so constipated they vomited fecal material, but not since we’ve been using PEG.

 

I know some of you by now are asking why we are using medication for constipation at all.  Isn’t it a crutch?  Why not fix the diet, try juice, prunes, coconut oil, stop all the dairy products, or whatever your favorite home remedy is.  We do!  If you have been in my office with your child and we haven’t talked about diet, one of us has had memory loss.  The problem is sometimes the same as with the cost of the PEG—reality.  The children are not buying their own food.  And to be fair, some parents really do provide healthy food and the constipation remains.

 

Whatever your thoughts about how children ought to be eating, when they get painful constipation or encopresis, OTC PEG gets them out of misery.  And coverage for it is going away for many of our patients on October 1.

 

I don’t know if our Medicaid will track ER visits for constipation or complications like UTI to see if costs go up. Will we save money on medications only to spend extra elsewhere?  I doubt it will take very long for us to see problems in our practices.   I plan to let the state know if I do.

 

 I want the Medicaid money to stretch as far as it can, so that no one goes without needed care.  I appreciate the state’s creative efforts to work the budget.  This particular change is probably not going to be as bad as the limit on prescriptions for adults, which will land some in the hospital (what do we skip this month—the diabetes medicine, the blood pressure medicine, the heart rhythm medicine?), but it will cause some definite problems.  No matter what insurance system we have, even if we had single payer, we would have to think about this type of decision.  

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Filed under Children's Issues, Medicaid

The Truth Hearing Report: Testimony on Healthcare


As promised, I am reporting back to you about our Truth Hearing held July 31 in Huntsville, Alabama.  It took a little longer than I anticipated—I wanted to be sure you could view all the video segments for yourself.

 

The purpose of our event was to obtain direct testimony from members of the public about difficulties getting necessary healthcare, without adding political commentary that might close off our thinking in regards to solutions.  In that spirit, I am going to provide limited commentary of my own and trust you to form your own opinions.   This will enable you to share it with friends across the political spectrum.

 

We had a few technical glitches—this was definitely a learning experience, and we will know better next year how to avoid similar problems.  I hope to do this event annually, so we can learn what is happening as our healthcare insurance environment changes.  Our volunteer videographer had a broken camera on the day of the event and so was unable to help.  I have to thank my husband, who stepped up to find and hire Brian Pitts of Pinnacle Video Services (does legal video depositions) at the last minute.  The sound was not as good on the first segments, and fortunately Brian realized there was a problem and fixed it.  My friend Sara Crocker and her husband Charlie also volunteered to video, and I used their broader angle for the opening segment. 

 

Here is the opening.  We invited several elected leaders—of those, Representative Laura Hall (Alabama Legislature) and Kenny Anderson (representing Mayor Battle) attended.  Dr. Richard Showers of Huntsville City Council had planned to come but was unable to do so.  Our two US senators, our County Commissioners, US Fifth District Congressional Representative, Regional Health and Human Services Office (will run our state Exchange), Alabama Medicaid Office and Governor’s office declined to attend. All were given the option of attending in person or selecting a proxy.

 

Community leaders who rose to fill the empty chairs:  Benard Simelton (Alabama NAACP President), Sara Crocker (Huntsville’s Human Relations Commission), Ann Denbo (board member National Alliance on Mental Illness, Alabama), and James Robinson (GLBT Advocacy and Youth Services). 

 

I counted 52 in the room, although I may have missed a few who entered after the beginning.  By sharing this blog with your friends, you can help keep attendance at our event growing.

 

I’m going to present the speakers somewhat out of order, in case you only watch a few, because it took us a bit to warm up to more personal stories. 

 

Bonnie Roberts, a fellow poet, told me later she had never imagined she would cry and was not looking for sympathy.  I am grateful that she did feel moved to share her deep feelings with us.  As you will imagine after viewing the video, she received offers of help (and help) after the event—she wanted most for you to know that she is by no means the only person in this situation.  Her story, to me, shows that for extreme medical expenses, most of us even with good jobs will not be able to plan well enough to avoid severe financial consequences.   It’s also a reminder that you may know people who need help and who will not tell you about it.  They are ashamed. Most of us want to be self-sufficient and to be givers, not receivers.  By talking about her situation, Bonnie is giving us valuable information—could this happen to us?  What would we do?  How would you respond to a person in her position? Bonnie has insurance—Medicare.  It did not keep her from having medical debt and ongoing medical expenses so high that she runs out of food at the ends of months.

 

Benard Simelton, in addition to serving on the listening panel, read Callie Greer’s testimony about her daughter’s death from cancer.  Callie so much wanted to attend herself but was unable.  I am grateful that she sent us her words and to Benard for reading them. Callie’s daughter was uninsured—she was sent home from the ER with early breast cancer, no physical exam, and a prescription for pain medicine.   When you hear it said that uninsured people can always get free care from the ER, this is the story you need to remember. 

 

Thomasin Cates told us how her insurance tried to refuse authorization for surgery to remove a football-sized, life-threatening tumor from her chest by saying it was cosmetic.  This sort of thing is more common than you’d think.  Here is the description of the policy that will form the benchmark for Alabama’s Exchange coverage—note page 41 where it says coverage excludes services “we determine are not medically necessary.”  All insurance policies I’ve seen have this clause.  All insurers I’ve worked with drag their feet and deny coverage with it, even when they know they will eventually have to give in.  During that foot-dragging time, illnesses can progress irreversibly.

 

Alix Morehouse has two stories, first about herself and then about her son.  She describes a classic Catch-22 in our healthcare system—she needs insurance to have surgery done which would allow her to work at a better paying job—with insurance.  She could probably get disability—but she doesn’t want to be disabled.  She wants to work.  Her son, who is insured, has had ongoing treatment for precocious puberty denied because the insurer dropped the only drug off their approved list and no longer covers it.  During the appeals process, his disorder has progressed for lack of treatment.  I am seeing more of this problem in my practice—dropping effective treatments off the formulary.  Alix’s son has an insurance card that is broken.  How many of us have broken cards and don’t know it yet?   How will we know?

 

Margaret Melton, who is insured, tells us how insurance rules have created barriers to getting her kidney stones diagnosed and treated and interfered with physician practice.  Her physician has told her that her insurance won’t “allow” primary care doctors to get diagnostic testing for the stones, only specialists.  I can’t speak to this, since I’ve not encountered it for stones—I wonder if the issue has to do with the red tape of getting prior authorizations for CT scans and if her doctor is tired of wasting time and getting denied.  It certainly does happen with me in my own practice for treatment of minor depression and ADHD, where many insurers will not certify me to do what I’ve been trained and licensed to do.  These children must wait for a psychiatrist appointment instead.  Bottlenecks occur at the specialist level, delaying care and saving insurers money.

 

Robert Partlow tells about his struggles to care for his wife through her serious illnesses.  Despite their attempts to be proactive, he and his wife have felt shut out of the process of choosing treatments.  She is now in a nursing home 100 miles away from him. What would have to change about our healthcare system to be more respectful, responsive and inclusive of the Partlows and others like them?  Have you encountered this access barrier of a different sort—inability to find meaningful care where your wishes were sought out and respected?

 

Don Ramsey tells about his difficulty getting healthcare, and his relief at learning he could get high quality care through the VA.  I appreciate his enthusiasm and desire to let others know—certainly any veteran who is eligible should take advantage of the care.  Unfortunately, about 1.8 million US veterans are not eligible for services through the VA.

 

Meg Tilden struggles with insurance that barely allows her to cover her costs and tells of her efforts to help others in our community with their healthcare.  She has encountered the world of Medicare Advantage insurers recruiting patients who then learn that their existing physicians and medications are not covered.   More competition without transparency means more confusion, and healthcare is not like a toaster we can return if it malfunctions.

 

Finally, John Jeter, who was actually the first speaker at the Truth Hearing, tells his story of being diagnosed in his youth with Type I diabetes. Good quality healthcare and personal responsibility have been critical to his survival.  Mr. Jeter puts his medication and hospital charges under much deserved scrutiny and offers his thoughts on healthcare reform.

 

In closing, I want to thank everyone who attended our hearing and who volunteered to help.  We had volunteers to run the sound system, to set up/clean up and to welcome guests.  This event would not have happened without them.  

 

Now you have attended our Truth Hearing.  What did you learn?  Did anything surprise you?  How can we do a better job informing each other of healthcare in the trenches?  What could we do differently, armed with the truth?

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Filed under citizen responsibility, Healthcare reform

Longing for Home: Re-visioning Healthcare


A couple of weeks ago, my husband and I drove down to New Orleans to help with a one day large free clinic event.  I heard Al Sharpton came.  I’ve had mixed feelings about these large events and have not been to one before.  Even though I know they can help change public perceptions, some have had significant problems with lack of good follow-up and were little more than glorified, showy urgent cares.  Too many health problems, especially in adults, need more than one visit to get untangled.  I did not like the idea of using worried sick people as political tools and not helping them much.

 

I was promised by one of my friends who helps organize this yearly clinic that it is different— tied into the existing free clinic network in New Orleans and a way to help get people connected to that network, in case they were not aware of it.  We were not expected to finish solving each medical problem.  We did have access to a few basic labs and a fairly extensive list of free prescription medications.

 

There were hundreds of adults and not many children.  So many doctors volunteered that none of them had to really rush—a good thing, because connecting with a patient takes time.  It appears that NOLA has done a fine job making sure parents know about resources for their children already.  I saw a few young adults in my curtained-off exam space, but most adults whose charts I reviewed had medications listed I had never used and sometimes had not even heard of.  My adult medicine colleagues have to keep a lot more pharmaceutical info in their heads. We pediatricians are rarely in a hurry to try out the latest and “greatest” drug on our patients.

 

Two of the children I saw announced they wanted to be pediatricians when they grew up.  The mother of one future pediatrician said her daughter needed a checkup.  I asked when the last checkup was and she replied it had been a month ago.  I was confused—kids at school age only need a checkup, a preventive care wellness visit, once a year—so I asked what had happened that she needed one earlier.  I wondered silently why she came to see a stranger instead of her daughter’s own pediatrician.

 

It turns out the mother had been laid off and could not afford to pay for COBRA extension of her family insurance policy.  She had a new job already lined up which would not start until a few months later.  She was there partly because the lack of insurance had disoriented her—she wanted to be sure “nothing was wrong” with her daughter that might have shown up in the last month. Being uninsured is scary, go figure!  She also had a prescription medication her daughter only needed in case of allergic reaction and needed a school form to authorize use.  Without insurance, she felt her relationship with the prior doctor was severed, and she didn’t know how to get the form done.  She hadn’t brought a form and this wasn’t something the clinic had anticipated needing. 

 

I was able to tell her about the available pediatric services for her child.  Both mother and daughter seemed to want to talk a little.  They needed a sense of connection and the reassurance that somebody cared what happened to them, even if it was someone they would probably never see again.  So we talked about getting good sleep, eating vegetables, what it is like to be a pediatrician.   I hope our encounter will be a good memory for that girl and that she will find it helpful if she joins my profession one day.

 

All the other patients I saw, adult and child, had already been seen in the free clinics.  So why did they come and sit in line with hundreds of sick people, already having access to care that was open for appointments at the same time?  In each case, it appeared to be due to a basic sense of disconnection.  There was free care, yes, but none of them seemed to view this as “real” medical care.  They could not remember the names of the doctors they had seen, and they did not understand what they had been told.  They had a nagging sense that maybe there was something else wrong that the free clinic had missed, and they were looking in one of the most transient settings possible—even an ER is still there the next day!— for personal,  meaningful care.

 

None of them had problems that could be quickly and easily resolved.  They all needed workup I could not do at the temporary clinic, surprising to me because generally in a day I order very few labs and x-rays.  But mostly they needed a personal relationship with a healthcare giver they trusted, whose name they knew, who understood their particular histories, who—dare I say it—loved them.

 

I tried as best I could to give my transient but loving presence, my full attention of one human to another in those encounters, in hopes it would somehow be meaningful. I knew it was not enough.

 

This to me is what we are most lacking in our current health system—care.  Insurance coverage won’t fix this.  In fact, if we really had given tending and attention to care at the core of medicine, all along, I doubt if we would have come to such a pass where insurance even mattered so much.

 

There’s a trend in the last several years to champion “medical homes” or “health homes”, a concept originally named by pediatricians back in 1967.  The theory sounds good, but the application has been warped into the medical version of “No Child Left Behind”—an attempt to codify what personal care means. In that process of codification, we have increased the impersonality of medicine.  Specialty groups and certifying organizations have their own checklists to use as measures of home.  There is an insistence that the achievement of a standardized home (oxymoron, anyone?) should result in extra payment to providers as well.

 

By quantifying the medical home, we are destroying it.  We are increasing homelessness in medicine.  We have monetized things that used to be just part of the relationship, like returning a phone call.  We are told that left to our own motivation, we will not do our best for patients—we must be bribed and prodded.  Doctors and patients both are becoming seen as interchangeable, like dollar bills without individual character. 

 

We are not interchangeable.  No human can be replaced by another, in the real world fast becoming a shadow of the codified one.

 

On the way home from New Orleans, I asked my husband whether it mattered to him if he knew his doctor well and had a personal relationship, or if he didn’t care as long as he got the correct service performed.  He said he didn’t care who did it, as long as it was done right.  When I asked him if that changed thinking about our (now adult) children, he instantly said it did—he would not trust a doctor with them who did not have a personal concern for their wellbeing.

 

I’m not sure I believe he really feels so impersonal about his own care.  Because I’ve heard him tell stories about Old Dr. H, the country doctor where he grew up in rural Alabama.  His father used to bring him in and whisper in all-caps, “Do you think he needs a SHOT? A SHOT?” When my father in law got very tired, several years ago, he went to see Old Dr. H, who instantly said, “Gene, you have a bleeding ulcer. I can smell it.”  And he was right.  I see the look on my husband’s face when he talks about Old Dr. H.  It is nothing but love, and a bit of wistfulness.

 

I want us to rethink this, re-vision, re-dream.  How do we recognize home?  Do we know we are home if there are x number of bathrooms or some set criteria of furniture?  Do we have standardized family members, who don’t count as family unless they perform certain functions?  One of the most quoted definitions of home saddens me, even though it is sometimes true:  Robert Frost’s “home is the place where, when you have to go there, they have to take you in.”  Has a grudging, unwelcoming sound. 

 

I like this from Abraham Verghese: “Wasn’t that the definition of home?  Not where you are from, but where you are wanted.” Too many humans have had little experience of being wanted, even in the homes of their childhood.  Little experience of safety, trust, or belonging, much less being actively wanted.  This goes for both patients and healthcare givers.  We all falter if not personally wanted and if not treated with dignity and respect.

 

At home, we can resist the temptation to monetize every bit of life.  We don’t have to tally every dish washed, meal cooked, towel folded—every story read aloud, lap filled with a child, goodnight hug—and turn it into a billing code or dollar amount.  We do those things not just because they need doing but because we want each other, and home is where that wanting happens, so it is right to make the space of wanted humans beautiful.

 

Is it still possible to return care to the core of medicine?  I think it is, and that it does not have to wait until some dramatic future event like a change of the insurance system, a change of political parties, the removal of personhood from corporations, or a general catastrophic collapse of society and return to pre-technology communities.  Maybe we should have a basic skepticism for any change that “can’t” happen until after some major shift in the world. 

 

We must become more oppositional.  Hang out with a toddler for awhile if you’ve forgotten how! Healthcare givers can start by resisting the process of monetization.  The saying “time is money” is untrue.  Our lives are not divided into hours of money, hours of family, hours of self.  Every moment of time is LIFE, and the entirety of any given second can never be fully reduced to money.  Even time linked with money already retains an element of unquantifiable life.  Resist the bean counters by giving that “extra” element of time as a gift to whomever you are with.  Do not allow anyone to trick you into thinking your love and life can be paid for. 

 

Care can happen (and does still happen) right now.  It starts, in true grassroots fashion, when small groups of patients and healthcare givers remember what care means and commit to sharing it.  Like any meaningful change, it spreads from resonance and desire, not top-down imposition.  A set of rules about health homes can’t create it—home instead comes as a natural consequence of care.  When we remember to care deeply and personally for each other, we will do whatever else is needed to be sure no one in our community goes unwanted. 

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The Light of the World is in You: It has not been Overcome


When I was 4 years old, I announced to my family that I was going to “be a doctor when I grow up.”  Why?  Because my preschool friend’s father was one, and I thought he was cool.  At age 49, 18 years into practicing pediatrics, my reasons have of course entirely changed.  I may or may not have grown up.

 

The same thing has happened with my advocacy for single payer.  When I started this, I was (in hindsight) incredibly naïve about the political world and the forces of power at play.  I did not have an inkling of how easy we are to dupe and manipulate—how our emotions can be hijacked by a researched phrase or just a word, and how we can imagine the resulting confabulations are our own.  I had spent decades in school and then working out the intricacies of how to take care of patients in the exam room.  I thought I was keeping up with politics the whole time, but I had only a very superficial grasp.

 

So when I heard about Medicare for All the first time, having been in practice long enough to be distressed by the strange abuses of economic power in medicine, I felt as if I had “come home”—that this was a beautiful solution to our problems and that all I had to do was make sure everyone understood it well enough to insist we have it.  It felt like a religious conversion must feel.  Everybody in, nobody out!  What could be better?

 

Don’t panic.  I’m not giving up.  It’s just that my reasons now are entirely different.

 

The first time I spoke publicly on healthcare reform, I was terrified before standing at the microphone.  I had never been a natural public speaker and used to have a tendency to be shy.  What happened, right as I opened my mouth, seems to have been lasting, because I’ve never been afraid of speaking since.  As I looked out at the audience, I could see who was there supporting the cause, who was uncertain, who was ready to give me what-for—and all of the sudden, I realized I loved them.  Instead of wanting approval or love from them, I felt an deep sense of compassion and affection in my heart, for them.  I thought, “Look how hard we are trying to get this right.”  I wanted to do my best job to pitch my lot in, not with only some of them but with everyone there.

 

In the years afterwards, I have slowly learned more about politics, power, and human nature.  I’ve given up the Democratic party, many subtle forms of utopianism, the myth of progressive evolution of our species, and the hope that single payer would work here the way it has in other countries.  I’ve given up my school-girl belief that our government is in any way composed of “we the people” and realized that both self-described conservatives and liberals are pawns in a game we will probably never fully understand, both seeing some true problems in each other but neither seeing our own.  At the same time, I know that because I’m human too, I am most certainly under the influence of wrong ideas I also cannot see.

 

The extent of entwinement of Capital in our governance is now so tight and the wealth and power disparities among us so gaping that I no longer think any of the traditional routes of change, using civilized and orderly processes, will do anything to influence our course.  Even social issues like marriage equality are probably not shifting for the reasons we think.  As we enter into more and farther reaching global trade agreements, it will become progressively less important for Capital to worry about keeping us pacified, and the disconnection of our votes from policy will become more apparent.

 

In this setting, I have to agree with my conservative friends that handing over health insurance financing to the government sounds suicidal.  We will get single payer, friends—when Capital has worked out how they can do it and still profit.  So it won’t be the same egalitarian and high-functioning system we’ve seen elsewhere.  On the other hand, our health financing is already under the thumb of Capital and Unelected Governance.  And we already all pay for the whole thing.  We are, right now, in it together.  We just can’t see it, and those running the show don’t want us to.

 

Some of my friends think the order of change needs to be campaign finance reform, a third party, an amendment to remove the personhood of corporations—then Medicare for All.  I toyed with those ideas, but I think now it is impossible. If we got those things, it would be in name only.  Real change of that sort would be too unacceptable to Capital. 

 

Throughout history, when great wealth and power disparities have become intolerable to the masses, the result has always been revolt.   Disparities are destabilizing.  Utopians for the underdog arise (often highly anti-intellectual), power is overthrown, and the whole cycle starts again.  The problem is that now the tools of battle have changed.  I do not believe the planet can survive the process of another American Revolution or Civil War.   And even if it did, unless we have learned to see each other differently—the way my perspective shifted when I looked out at that first audience—there would be no point in revolution anyway.  It would be palliative care, hospice for humanity.  Eventually we’d wind up right back here.

 

If there is no escape from malign power, what then?  I support single payer, because I think there is a ghost of a chance that seeing ourselves with a common purpose—a decent healthcare system—might help us also have different eyes for each other.  It is a tremendous long shot.  I don’t expect or want Utopia to result—just a little moderation of the divide between us.  I don’t see that we can pursue entire withdrawal of energies into small communities and let government pretend to drown itself in a bathtub.  That’s just a word game, and we are the losers.  The power won’t release us—it will just change its name.

 

What else?  Insurance reform, even single payer, can’t possibly be a whole response to the brutality of our healthcare system.  Not knowing how on earth to make a difference in this mess, I keep coming back to the one thing I can do, immediately and every day—practice love.  Love is the ultimate subversion to power and Capital.  Power has no idea what the hell to do with Love—it has no weapons or means of control against it.  If you want to love, no one on earth can stop you.  It isn’t real love, though, if it only applies to those who accept your particular ideology.  Love means, in whatever circumstance you find yourself, whether that’s on Facebook or facing a room of the “enemy”, that you refuse to play by the rules of labels and stereotypes.  For us, right now, we can say “everybody in, nobody out.”

 

Some of my friends in religions believe in a Utopia where the powers of good triumph over evil, finally and definitively.  I don’t.  Neither do I believe in the converse.  I’m not a supernaturalist, and if I use the word God I am speaking metaphorically.  The most resonant words in the Bible for me are “The light shines in the darkness, and the darkness has not overcome it.”  Not the light burning up the darkness.  Just shining on in spite of it. At the end of the world, even if we annihilate ourselves, in our last breath and heartbeat, we can keep that light of love, our stubborn kingdom of heaven, on fire. Amen.

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Filed under citizen responsibility, Healthcare reform

Truth Hearing: Your Help Needed!


Now that I’ve finally done worrying with and studying for my every 10 year board recertification, it’s time to get busy for a more important project: Truth Hearing.  On July 31, the day after Medicare’s birthday, I have reserved the big room in the Huntsville Main Library from 6 to 8 pm.  I will invite local and state leaders to sit on a panel of listeners, while members of our community testify about their personal experiences and difficulties accessing healthcare.

 

Healthcare Now came up with this idea several years ago.  I only learned about it recently and thought it sounded just right as a project for North Alabama Healthcare for All (NAHA, our chapter of Physicians for a National Health Program).  In this Truth Hearing, leaders will be asked only to listen—not to question us or respond with canned speeches.  Of course, I expect many of them will want to hang around afterwards for conversation, and that’s fine.  But I don’t want any of them using this as a chance to push their own agendas.  There will be no PowerPoint presentations or speeches.

 

Just us, telling our stories and listening to each other.

 

There is an onslaught of propaganda from every direction, and not only from Fox and MSNBC or other media avenues.  We have let ideologies, stereotypes and sound bites invade us on our Facebook pages and in everyday conversation.  Reminds me of wearing designer clothing labels and paying to advertise someone else’s product on our rear ends.  It’s high time to unplug our ears, rip off the labels, and find out what is really happening, in the homes of those we share our weather with.  Not only that—we need to do it repeatedly, at least once a year, to learn what the corporate press and the politicians are not going to tell us.  As the ACA rolls out, we should be sure to learn the real effects of turning our health over to the unelected governance of private insurers.

 

I know it won’t be a random sample.  Sometimes it seems ridiculous that we respond so intensely to stories, statistics be damned.  But maybe we can put our story-loving selves to good purpose.  A story of injustice, with a face and a voice, can be a tipping point—if not for social change, it can change us on the heart level, and that’s where real healthcare reform needs to begin.

 

To do this right, I need some help.  Our core membership for NAHA is very small, and I am not a great organizer.  I hope some of you can pitch in for this event.  I want to fill up those 200 seats.

 

This week I am going to send out invitations to listening leaders.  I’d like your feedback on the composition of the panel, which I think should be no more than 10 to 15 people.  Each invitee will be allowed to send a suitable proxy if unable to attend—failure to appoint a proxy will result in an empty chair with a name card.  Here’s my working list:  2 members of the Madison County Legislative Delegation (one from each party); 1 member of City Council; 1 member of the Madison County Commission; the Mayor; Mo Brooks; our two Senators; our Governor; our regional Health and Human Services director Pamela Roshell (because our Exchange will be run by the fed).

 

I need two people to help with coordinating audio services with the library.  I have paid the fee out of my pocket to reserve the room and will also pay to rent the microphones/ speakers, but I do not have a free day between now and July 31 to get trained in using the library equipment.  I think two people willing to commit to that would be safer than one.

 

I need helpers to sit up front, to be ready to stand with those who want to testify but are anxious about standing alone.  Needs to be folks who are comfortable holding hands with strangers if asked.  I need greeters at the door to welcome attendees.

 

I need help with getting the word out.  I will have a flyer ready by the beginning of July (although if any of you are good with catchy artwork, your help is very much welcome), and I need people who will commit to sending it out by email, posting it around town, and pestering their friends to come.  I need help making contact with press, so we can get coverage.  I know a fellow who has recently started working with Story Corps at NPR and will ask him if he might want to attend, in case he would like a follow-up interview with a family. When I have the flyer ready, I will also put an event page on FB and ask you to share invitations with friends.

 

I need 2 camera people (with equipment) to video the event, so we can put coverage on YouTube afterwards.  Those testifying will be asked to sign a release, although we will have an option for those who desire not to be recorded to have either only their voices heard or to be omitted from the video completely.

 

I need people willing to tell their healthcare access stories—not their political solutions or problems but the stories of what actually happened to them because of difficulty getting healthcare.  It would be ideal to have at least 12 committed in advance, since each person will have 3 to 5 minutes to speak. I know talking about personal health and financial matters in public can be difficult. Heck, public speaking on anything at all can be scary!  We are ready to stand with you.  We need a few brave souls to tell the truth—the whole point of a Truth Hearing.  You are certainly welcome to omit the specific details of your medical diagnosis and focus only on how your life has been affected.

 

I know I’m asking a lot, and all of you have other work to do.  If I don’t get sufficient help, I will play Little Red Hen and do what I can—but if you want a meaningful, effective event, please step up! Email me at pabston@aol.com and tell me what you can contribute.

 

I have been listening to healthcare stories for my whole career.  Families in my office who have suffered the ill effects of being uncared for and rejected by our profit-driven medical system tell me on a daily basis what it is like.  More than anything else, their stories have made me determined to stick with advocacy for Improved, Expanded Medicare for All—everybody in, nobody out.  I have the numbers and knowledge of experience in other countries to back the concept up, but at the end of the day, it is always real people that keep me in the fight.  Will others in our audience and on our panel be similarly moved?  Let’s listen to each other and see what happens.

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Filed under citizen responsibility, Healthcare reform