OUTSIDE INTERFERENCE

by Paul Gibbs

One thing I have never found myself thinking during our extended campaign for Medicaid expansion/ Healthy Utah/Whatever the next solution is called is "You know what Utah really needs? Another right-wing foundation that cares more about ideology than facts getting involved in this." But we keep getting them anyway. The latest is a new chapter of Americans For Prosperity, a the principal political advocacy group established by the billionaire Koch brothers, two of the more controversial figures in American politics. The the group is just barely getting started, they've already listed Medicaid expansion as one of the issues they plan to target.

What's so troublesome about this development is that it means yet another non-Utah run, ideologically based group getting into this fight to serve a political agenda rather than to do what's best for the people of Utah. We've already seen the Florida based Foundation For Government Accountability run a campaign here which was based on stock photos and stock arguments. About the only thing the seemed to bother to learn uniquely about Utah was the name of the Governor they were picking a fight with. It's one thing to have Utah legislators whose idea of how to solve this problem differs drastically from the majority of Utah's citizens. It's another to have outsiders who have no stake in Utah try to mess up healthcare for tens of thousands of people as part of an agenda to mess with Obamacare, regardless of the cost.

Can anybody reasonably doubt that the conservative voice is being heard?  Sure, opponents such as Rep. Jake Anderegg (R-Lehi) love to act as if their voice isn't getting a chance to be heard on this, but if the voice in favor of Healthy Utah is louder, it's only because there are so many of us, from such a wide variety of of political, religious, medical and business backgrounds, speaking as part of a true grassroots effort and echoing the voice of the majority of Utahns. No matter what groups like the FGA or Americans For Prosperity want us to believe, this isn't grass roots activism, and it isn't the voice of the people of Utah.  The Koch brothers modus operandi is to spend so much money that the voices of two people with an ideological axe to grind are louder than the united, informed and educated voices of concerned citizens. We can't allow that to happen in Utah. Our voices have to be louder, and we can't stop talking.

WHY WE HATE PCN

by Paul Gibbs

Recently Utah House Majority Leader Jim Dunnigan, creator of the proposed "Utah Cares" plan and a member of the six person committee devising a new plan for Utah's coverage gap population,  made the point that those of us who have been critical of Utah Cares have focused almost exclusively on the less "robust" coverage provided Utah's Primary Care Network (PCN), and not on the high quality coverage his plan would offer to a large number of the people being helped. On one level, Rep. Dunnigan has a solid point: we absolutely have focused on PCN. However, I think that Rep. Dunnigan is conviently brushing aside the fact that the competing proposal, Healthy Utah, and any solution most of us are pushing for, would give that high qulaity coverage to everyone getting this assistance.  Taken in full context his defense loses its power. And because PCN remains among the discussed possibilitess for coverage, it's important to keep talking about its inadequacies.

So, what exactly is wrong with PCN? Why do we hate it so much? Why do so many people (and the people I've heard this from have been doctors and nurses) refer to it as "Pretty Crappy Network" or "Practically Covers Nothing"? The reason is that PCN is very limited in the coverage it provides. To quote their own website, the network covers:

• Visits to a primary care provider
• Four prescriptions per month
• Dental exams, dental x-rays, cleanings, and fillings
• Immunizations
• Eye exam; no glasses or contacts
• Routine lab services and x-rays
• Emergency room visits (restrictions apply)
• Emergency medical transportation
• Birth control methods

Those things it does not cover include:

Prescription eyeglasses, contact lenses, MRI’s, CT Scans, Dexa Scans, outpatient hospital services, specialty care, pregnancy related services, mental health services, occupational therapy, physical therapy and chiropractic services (emphasis added by me).

First, let's talk about those restrictions to Emergency Room care. The website description is as follows: If you feel you are having a life-threatening medical emergency, PCN will cover an ambulance ride (ground or air) to the nearest hospital. But, in order for PCN to pay for the ER visit and visit with ER provider, the final diagnosis must be an “approved” medical emergency. Even if your primary care provider tells you to go to the ER, the final diagnosis must still be approved by PCN . . . PCN does not cover MRI’s or CT Scans even if it is during an approved ER visit. Also, if a specialist is called into the ER to visit you, that service will not be covered. For example, if you have an injury and you were seen by an orthopedic specialist along with the ER doctor, then you must pay for the orthopedic specialist.

This is highly problematic and goes beyond the obvious intention to prevent unecessary ER use. For example, in February of this year my father went to the emergency room because of symptoms which he thought may have been a heart attack. Thankfully they weren't. Had he been under PCN coverage, he would have been left worrying whether this vist would be deemed a legitimate emergency (to avoid confusion for those who know me, the accident which lead to me father's untimely death a month later was completely unrelated, and insurance coverage was in no way a factor).

Now let's deal with some of the other issues. Coverage for Pimary Care visits is great. Nobody is disputing that. But lack of specialty care and important tests like MRIs or CT scans is obviously an enormous drawback. Essentially PCN will help you with smaller issues, but not the big stuff.

Let me give you two real life examples of the difficulties created here: My cousin Ben is on PCN, and it will let him visit a doctor, but it won't help him with removal of the 45 lb. growth on his leg which makes it nearly impossible for him to walk, let alone work. It won't help with the rental of the C-PAP machine he needs to care for his potentially fatal sleep apnea.

My chronically ill friend Clare Richardson describes her experience with PCN this way:  PCN was great for the most minimal possible needs: doctor visits were $5, blood tests covered, prescriptions were $5, it paid for one eye exam a year (not frames/lenses) and very basic dental (cleanings/fillings). When it comes to hospital stays, emergency rooms, or any further testing, you are out of luck. PCN didn't help me with a basic medical procedure like ingrown toenail removal, for example, and I have been unable to see specialists that could help me because specialists absolutely are not covered under PCN . . . . PCN is truly, absolutely the bare minimum that Utah can do for its citizens, and when you are on PCN, you feel that each time you turn around. You're better off than you would have been, but you're not healthy. If you are a chronically ill person, PCN places you in stasis. This far and no further.

Part of Dunnigan's defense was that the far more complete Medicaid coverage qould have gone to the lower income "most needy" people under the plan, and I have no doubt that something similar will be true of any plan which involves PCN. Again, to a degree that's a solid point. But it places an awfully high burden on the rest, people who still have low incomes (otherwise they wouldn't be eligible). The great irony here is that this concept, championed only by conservative members of our legislature, inherently goes against some of the more prominent pieces of conservative dogma we've been hearing it recent years: it penalizes people for having higher incomes, and it "rations" healthcare.

Our criticism of PCN is not based on trying to emphasize the negative. We appreciate that it's better than nothing. But it's not a real solution, and shouldn't be a part of the compromise between the members of the committee. Solving this Medicaid expansion issue requires solid, comprehensive coverage, and not just for the poorest of the poorest of the poor. PCN should not be a part of the discussion.

PATIENTS ARE RUNNING OUT OF PATIENCE

by Paul Gibbs

The Thursday, May14 panel discussion on "Designing a Medicaid Expansion That Is Fiscally Responsible" offered some reasons to feel encouraged and hopeful. Some of these came from House Majority Leader Jim Dunnigan (R-Taylorsville), of whom I've been pretty critical in recent months. But there were also causes for concern, and for me, the biggest of these also came from Rep. Dunnigan, who, when asked for reasons he's hopeful, stated his belief that "The people of Utah will be patient for us to get it done right." "Getting it done right" has been a popular refrain from Dunnigan, and it's a laudable goal. But he's mistaken (and distressingly out of touch) in thinking that the attitude of Utahns toward this porocess is one of patience. Polls show us that the public (as well as businesses and organizations) overwhelmingly support Healthy Utah, and, frankly, patience has worn thin to the point of exhaustion. More to the point, when people are suffering without healthcare, as so many currently are (the extensive testimony that was offered to the former Utah Healthcare Reform Task Force makes this an objective fact), it's not resonable to ask them to be "patient." Many of these people literally can't wait.

But Dunnigan's assertion that is not strictly opposed to accepting federal funding was great news, and the most hopeful sign I've seen since the end of the legislative general session. The biggest obstruction to the Medicaid expansion proccess has been the rigid and stubborn ideological opposition offered by by far right members of the legislature. The mantle of poster child for this has moved from Sen. Allen Christensen to Rep. Jake Anderegg. Anderegg (whose recent op-ed for the Deseret News merely reiterated the same old objections without strong fact or logic to back them up) was present as a member of the audience, and his prescence and the question he asked about the waiting list for disability benefits felt more like grandstaning than an actual attempt to understand an issue or present a solution. His query "Shouldn't we do something about that first before expanding?" was ably aswered by multiple panel and audience members, who pointed out that disability benefits are very different program from Medicaid. And RyLee Curtis, a policy analyst for Utah Health Policy Project,
pointed out that the majority of those on the waiting list for disability benefits are, in fact, in the coverage gap, and therefore will benefit by an expansion. In short, Anderegg's point was specious and just another excuse to obstruct expansion efforts. The contrast helped underscore that while there's little I agree with about Dunnigan's approach to the problem, I believe he's serious about wanting to find a soultion.

I actually felt defensive of Dunnigan based on his opening point that he'd been recieving letters asking him why he "hates children." First of all, as he correctly pointed out, children cannot be in the coverage gap. Second, that's an absurd and vicous attack with no basis in reality. While I have no personal aquaintance with Rep. Dunnigan beyond a small ammount of interaction in legislative meetings, I am aware of his personal life as a devoted family man, and he patently does no "hate children." I don't think that's a remotely fair accusation toawrd anyone in the Utah State Legislature, and that sort of cheap attack is harmful to our cause, not helpful toward it. However, Curtis' point about how children are being effected by the delay is airtight: a large portion of those in the coverage are parents, and it should be a no-brainer in a "family oriented" state like Utah that leaving parents without access to healthcare is harful to their children. Additonally, the information from other states (and from Utah) shows us that children are more likely to be enrolled in Medicaid or CHIP if their parents are enrolled in medicaid coverage or something like it. Dunnigan even made this point himself in trying to challenge the assertion made by other members of the panel that Utah was unlikely to experience the "woodwork effect" expansion states have, where people who didn't know they were eligible for coverage discover they are and "come out of the woodwork", thereby inflating enrollment rates. Nevertheless, while I think it's clear that the delay genuinely is harmful to Utah children, I strongly object to claims that Dunnigan or any of the other members of the legislature "hate children."

Another area where Rep. Dunnigan's reason seemed flawed was his statements of concern that states which have expanded Medicaid (either straight up or with variations) have seen much higher levels of enrollment than expected. This is true, but as Leavitt Group Director of Intlelligence Lara Summers responded, those states have also found that not only did that not translate into higher than expected csosts, states have also found that the costs are coming in below expectations, which negates the substance of this argument. Summers also pointed out that the "woodwork effect" was occuring in states such as Washington, where it was more of a "Welcome Mat" effect, in that they are seeking out and enrolling as many people as they can, something Utah is clearly not going to do.

In general, as has consistently been the case, statements painting expansion in a problematic light tended to be full of holes, and the real substance of the panel showed that it's good for Utah as a whole, not just those in the gap. But I was left with a hieightened feeling of unease that Rep. Dunning and House Speaker Greg Hughes are less willing to compromise than the federal government is, and this came from Dunnigan's own assertions that he would not only be looking to "build ladders"  to get over the "fences" set by federal rules, he'd also be trying find the blind spots of the guard towers. This attitude clearly isn't conducive to good faith negotation or give and take, and despite the assertions of anti-Fed hardlines like Anderegg, reaching a solution will have to involve give and take from both sides of the argument.

So the day was full of both hopeful signs and troublesome red flags. And despite Dunnigan's admission that "everybody wants a solution two months ago", the truth is most wanted a solution two years ago.

SECOND OPINIONS

When I was told in November of 2009 that I was in end stage kidney failure, I had a large group of top quality physicians presenting me with a solution: primary care doctors, surgeons, and kidney specialists all agreed that the best course of action was a kidney transplant. Not long after, I ran into a friend with whom I’d taken some college courses, and she was convinced that a transplant was a bad idea. She gave me a pamphlet about an alternative therapy involving herbs and other “natural remedies.” I read the pamphlet, but in the end, couldn’t give it the same consideration I gave to the opinions of my doctors. When I had a consensus of experts using facts and science, it hardly made sense to go with an ideologically based opinion which didn’t seem to have any strong evidence or concrete methodology behind it. Besides, it didn’t really offer a solution to the problem, just a way to put off a solution it didn’t like.

The case we’re encountering with the differing approaches to closing Utah’s healthcare coverage gap. The Healthy Utah plan is the result of two year’s worth of study and deliberation by top state and federal officials as well as the medical community and insurance industry. It fits research which has been conducted by Phds at the University of Utah and other credible organizations. It’s supported by top officials in both of Utah’s major political parties, and has been endorsed by dozens of local organizations ranging from medical groups such as the Utah Hospital Association, Intermountain Healthcare, University of Utah Medical Center  to political, religious and business leaders . And it solves the problem of Utah’s coverage gap,  providing quality, comprehensive insurance coverage to those who do not qualify either for traditional Medicaid or premium assistance under the Affordable Care Act.

On the other hand, on the anti-Healthy Utah side of the spectrum, we have a much smaller and less impressively diverse group of spokespeople. Aside from the exclusively far right Republican legislators who support either another plan such as House Majority Leader Jim Dunnigan’s “Utah Cares” plan, or doing nothing, the only organizations we hear speaking up are groups like the Sutherland Institute, which are admittedly ideologically based, and are therefore looking only to support ideas within their belief system. And even their actual proposals, such as Utah Cares, don’ actually provide access to quality, comprehensive healthcare coverage. They simply put off implementing a solution they don’t like, in this case Healthy Utah. 

There’s an enormous credibility gap between those who support Healthy Utah and those who oppose it. To follow the opposition would be like taking the advice of that pamphlet, and choosing not to pursue a kidney transplant and instead go for something that sounded less scary and more superficially convenient. But in both cases, this would not fix the problem, and the end result would be something all concerned parties would regret.

A POOR EXCUSE

A version of this article first appeared on April 1, 2015 on Utah's Poor.

by Paul Gibbs

“Great. I'm so excited to pay lazy people's medical bills!” That was the Facebook status update a friend of mine left the day after Barack Obama was elected President of the United States in November of 2008. Coincidentally, it was also one week after I had been diagnosed with end stage kidney failure and told I would need a transplant. The kidney disease, the surgeries I had and the recovery from them was full of many different kinds of pain that one of my surgeons aptly described as “feeling like you've been hit by a truck.” But none was more painful than being called lazy because I was uninsured and needed help.

In fairness, it should be pointed out that the friend in question emphasized that he didn't mean me. No, of course I wasn't one of those people. In fact, I've been told over and over again by people who repeat the stereotypes about lazy welfare frauds that I'm exactly the kind of person the system should be helping. I wasn't some deadbeat that wasn't working, I was working part-time for the Clark Planetarium and as a part-time actor, going to college part-time, and was a full-time care provider for the two greatest kids in the world—my niece and nephew. My sister and her husband both had to work full-time to support their family, so I was living in their basement and helping pay rent while taking care of the kids. The problem is that while in these people's eyes some like me is the exception, experience and statistic show us that I'm pretty average. But it's a lot easier to oppose programs such as Medicaid or Governor Gary Herbert's Healthy Utah plan if we tell ourselves that the people they're helping don't deserve them. That's really the entire basis of stereotyping: it's a way of justifying hating or turning our backs on people.

Because I felt that everyone should have the sort of live-saving access to healthcare that I had, I became an active part of the campaign for Healthy Utah. My activism has primarily taken the form of a documentary film called Enitled to Life, in which I told the stories of some of the tens of thousands of Utahns caught in the coverage gap between traditional Medicaid and premium assistance under the Affordable Care Act. I've continued to document and share the stories of these people, not just in Utah, but also in North Carolina and Florida. In over a year and a half of actively searching out people with stories to tell, I have yet to encounter one single person who was uninsured because they didn't want to work. But I've encountered many whose situations made mine seem easy.

Take my good friend and fellow activist Stacy Stanford, a college student who has started her own online business, and also volunteers with many causes to help disabled people such as herself. She's easily one of the most intelligent, hardest working and most determined people I've ever known. She's also suffering from a neurodegenerative disorder which has put her in a wheelchair. And she can't even get it diagnosed so she can qualify for traditional Medicaid because she can't afford the necessary specialty doctor visits. While Utah does (as Healthy Utah opponents in the legislature keep pointing out) have a strong charity care network, it provides zero options for someone like Stacy who needs specialty care. Free clinics don't give MRIs, and programs like PCN (Utah's Primary Care Network, an integral component of Rep. Jim Dunnigan's poorly named “Utah Cares” alternative plan) doesn't cover them. So Stacy is left gritting her teeth and working and going to school through pain and illness that even I, a chronically ill person myself, can't really imagine. Nobody in history has ever worked hard enough to earn the right to call her “lazy”.

Or take Melanie Soules. Melanie was a CEO and team leader for a local real estate company when she started suffering from symptoms such as hot, burning patches on her forehead and what she described as “hot oil flowing underneath her skin”. She developed vision and memory problems, and eventually lost her job, which left her and her two children uninsured. Melanie suffered from trigeminal neuralgia, and was unable to get access to healthcare. By far the happiest moment of my time as an activist was when I saw Melanie at a meeting and, for the first time since I'd met her, she looked well. I still cry just thinking about that moment. Melanie managed to get employment which gave her insurance coverage and allowed her to receive treatment. But she had to wait a year to get it. Did she deserve that? Was she “lazy” because she tried to keep working but the illness caught up with her?

Sure, people may say, but what about the person who chooses not to work and has 12 kids and uses their SNAP to buy lobster? I can't guarantee you these people don't exist just because I haven't met them. But I can tell you that it's a proven fact that they're in the minority. Research from the University of Utah determined that 65% of those in the coverage gap work at least part time. 85% of familes have at least one working adult. Under Healthy Utah, these people would be eligible for the healthcare coverage they need. Under the alternative plan proposed by Dunnigan and passed by the Utah House of Representatives, 40% of them would be only be eligible for a version of PCN, which we've already seen wouldn't help people like Stacy or Melanie. My friend Clare Richardson, who also suffers from chronic illnesses, explained to me that PCN wouldn't even cover treatment for her ingrown toenail. To claim this is comparable to the sort of care offered by Healthy Utah is so absurd it would be comical if it weren't so tragic. Dunnigan admitted to the House Business & Labor Committee that PCN “isn't a Cadillac plan”, but as I told them shortly after, it isn't even a Pinto plan.

Most poor people aren't poor by choice, and to portray them as such as ridiculous as to claim that people choose to get sick. But it's a way to deny compassion to our fellow human beings without feeling guilty about it. We can even be self-righteous about it and claim we're sticking up for good values. But the people who are suffering, and those of us who work with them and love them, know that simply isn't true.

CADILLACS, PINTOS AND YUGOS

by Paul Gibbs

Healthy Utah finally got its committee hearing on Wednesday, March 4, in the Utah House Business and Labor Committee. This was a little bit like having Olympic figure skating judged bu plumbers. But this bizarre non-sewuiter was no mere chance: it was a committee stocked with far right-wingers like Rep. Jacob Anderegg, and one one where "Utah Cares" sponsor Jim Dunnigan would have a lot of imfluence. It was a hearing, but not a faor one, and despite extensive expert testimony and overwhelming evidence, Healthy Utah lost.

In presenting his "Utah Cares" plan, Dunnigan admitted that Utah's Primary Care Network (PCN), on which his plan heavily relies, is "not a Cadillac plan". In my testimony, I countered that it isn't even a Pinto plan. Later, Dunnigan compared his plan to a Yugo.

The problem with "Utah Cares" is that PCN provides unbelievably weak and liimited coverage. No specialty care. No behavioral health care. No hospital care (my friend Clare Richardson couldn't even get help with an ingrown toenail). Very limited ER and prescription drug coverage. It's only because of a motion by Rep. Edward Redd that it now includes Mental Health care (which raises the level of care from "patthetic" to "poor"). Perhaps Dunnigan's Yugo analogy is apt in the following ways:

1) It's "affordable," but it's not there when you need it. 
2) The Yugo came out of a Communist country that had no compunction about engaging in rationing, and PCN is rationing, plain and simple, no two ways about it. 

Some are encouraging those of us who support Healthy Utah not overlook the good because we want the perfect. That's wrong on two levels:

1. "Utah Cares" can and at very best be called "mediocre". It fits no reasonable definition of "good".
2. A huge number of of us who support Healthy Utah do so because we are accepting the "good" of "Healthy Utah" because we couldn't get the "perfect" of Medicaid expansion.

Compromise is a good thing. It's the way a democratic government works. But "Utah Cares" isn't the compromise. If Rep. Dunnigan is willing to work with Senator Brian Shiozawa on a compromise between Healthy Utah and his bill, maybe we can work up a compromise more like a  Toyota Camry: not the best, but solid and reliable. Until then, "Utah Cares" isn't a compromise, it's a defeat for everyone.

"BETTER THAN NOTHING"

by Paul Gibbs

As Healthy Utah now advances toward a committee hearing, it does so along with the latest incarnation of "Utah Cares", an alternative plan from Utah legislators. The name of that plan is inadvertently telling: its purpose is to send a message that these legislators aren't a bunch of heartless bureaucrats who don't care about people who are suffering. Sadly, the bill seems far more concerned with sending that message than actually helping people.

"Utah Cares", sponsored by House Majority Leader Jim Dunnigan, relies on a mix of traditional Medicaid and heavy reliance on Utah's Primary Care Network (PCN). Dunnigan himself has, on multiple occasions, referred to PCN as "better than nothing". Is that really what we plan to offer as a solution?  PCN covers primary care only, which means no specialty care, no urgent care, no mental health coverage, and only limited prescription drug coverage. In essence, "Utah Cares" has morphed from a Senate plan which only covered people after they got sick enough to a plan which only helps people until they get sick.

Dunnigan defends this (as Allen Christensen defended his SB 153) by saying it's a big step, that it expands some form of coverage to a lot of people who didn't have it.  That's a very skewed way of viewing the situation. It's not about how their plan compares to the status quo, it's about how it compares to the very effective alternative we have in place, and comparing Healthy Utah to "Utah Cares" is like comparing the Superman to Justin Bieber. Healthy Utah gives actual help to those in need, and brings a lot of tax money back to Utah and into our economy in the process. "Utah Cares" spends a lot of new money so we can pat ourselves on the back and say we tried.