5 THINGS YOU CAN DO TO HELP

by Paul Gibbs

Want to know how you can help? Okay, I'll tell you. Some of these are things we've touched on before, and some are new. But all will help in the fight to bring health care to Utah's needy citizens.





1. EMAIL REPUBLICAN LEGISLATORS
I'm not being partisan here. Emailing Democrats isn't just preaching to the choir, it's preaching to the preacher. But GOP legislators need to keep feeling the pressure on this. Don't be nasty and insulting, as tempting as that may be. That isn't helpful. But letting them know that the peope of Utah are tired of their delays and will make their voices known at the polls in November is very helpful.




A few email address:


House Speaker Becky Lockhart: blockhart@le.utah.gov


Senate President Wayne Niederhauser: wniederhauser@le.utah.gov


Senator Allen Christensen: achristensen@le.utah.gov


Rep. Jim Dunnigan: jdunnigan@le.utah.gov












2. ATTEND GATHERINGS
Organizing For Action has two events planned in Utah in August.

	Coffee and Healthcare Thursday, August 7 4:30 PM Hidden Peaks Gourmet Roasters (Taylorsville, UT)

    Advocacy to Action: Expanding Health Care to Utahans (Action Planning Session)
    Wednesday, August 27, 2014 1:00 PM - 3:00 PM
    Salt Lake Community College-Taylorsville Redwood Campus (Salt Lake City, UT)

   4600 Redwood Road, Student Event Center (Room TBA)
   Salt Lake City, UT 84123

3. WRITE A LETTER TO THE EDITOR
The Salt Lake Tribune, The Deseret News, The Prove Daily Herald, The Ogden Standard-Examiner, whatever. Keeping the issue in the public eye is extrememly important.



4. SHARE THINGS ON FACEBOOK
Whether it's the YouTube link to Entitled to Life, posts from this blog, or any of the excellent articles on the Utah Communities For Healthcare Coverage Facebook page, there is a lot of stuff you can share on social media that will keep people thinking. I know we all hate seeing political stuff showing up all the time, and I know it's tempting to avoid alienating friends who may be offended. I'm quite sure I'm losing some friends by publicly aligning myself with the liberal commies who want to destroy America by . . . Keeping Americans alive . . . But it can help influence people for good.









5. VOTE IN NOVEMBER 
If you don't do this one you're as much a part of the problem as anyone is. Obviously you have multiple issues to consider when choosing candidates, but please pay some attwntion to where candidates for state legislature stand on this issue. Any and all of the Democratic candiadtes support it, but a few Republicans like Ray Ward in Bountiful are also strong supporters.





Please try to do at least two of these this week. Even if you've done them before. And especially remember to do #5 in November. Lives really do depend on it.

"GET PEOPLE WITH BETTER VALUES"

by Paul Gibbs

More and more the opponents of Medicaid expansion/Healthy Utah balk at the suggestion of addressing the issue at a special legislative session before the general session in January. It's likely that this is, for some, a delaying tactic to protect their conservative credentials in the upcoming election. For others it's an indicator that they simply won' t let this move forward at any point. The question for us as voters is whether we choose to do something about it. If the decision doesn't come until January, then we need to do exercise our electoral control over the situation. As Episcopal Bishop Scott Hayashi said at the Entitled to Life premiere, "If their values won't allow them to do this, we need to get people with better values". The problem is that the necessary step to do this is an unlikely and unpopular one in Utah: electing more Democrats to our legislature.

While I'm sure it won't seem this way to some readers of this blog, I've tried to avoid getting too overtly partisan. I'm far more concerned with getting people the help that they need than with putting a win in my party's column. Being aggressively partisan is a great way to lose half of your audience, and besides, not only have I encountered some support from conservative friends, a few of the real champions of this issue are Republicans. But sadly, far too few. And there is no denying that all of the opposition we're facing is coming from the right side of the aisle.  And we're giving them the power to kill a program that 77,000 Utahns desperately need by removing the systems of checks and balances and making this a one party state. And it's a party that doesn't represent the vast majority of Utahns who support the Governor's plan (but who choose full expansion over the status quo). The facts are as clear as they can get that we need to do this. And the majority of Utah's Democratic Party has done all it can for compromise by getting behind the Governor's plan rather than holding out for full ACA expansion. Those who haven't will end up supporting it over doing nothing (most are almost there anyway).

So what'skeeping you from voting for Democratic candidates? A belief in "Fiscal responsibility"? The party/ideology that's advocating throwing away millions in funding to do the financially sound thing while they pour more of your tax dollars into "studying" a crystal clear issue has no right to call themselves fiscally responsible. Is it "standing against government tyranny"? Could there possibly be a more clear-cut case of government tyranny than a legislature which denies tens of thousands of human beings the right to stay alive because they want to make an ideological point? Is it "moral values" ? It's positively obscene to call turning a blind eye to the suffering of thousands of people "moral". Wherever one stands on issues such as same sex marriage, they are not the beginning and end of morality. The sanctity of human life is a moral issue, and it's absurd to think that applies only to the unborn. Besides, adding more Democrats to our legislature isn't going to change Utah's abortion laws, and the issue of Utah's same-sex marriage ban will be decided by the United States Supreme Court, not the Utah State Legislature. What will be decided by the legislature is the fate of 77,000 Utahns who need health insurance but can't get it. It's very likely this includes people you know. Probably people you love.  A vote for Republican legislators (with a few exceptions)  is a vote to deny them their chance at health insurance. A vote for a Democratic legislator is a vote to give them a chance. I truly wish it wasn't that simple. I wish more conservative Utah politicians cared more about who lives and who dies than what the Eagle Forum will say if they accept money from Big Bad Barack. But all of my experience with this issue is telling me that far too many of them don't.

If you're committed to "voting for the person, not the party",  fine. Take a look a what the individual believes and supports. But please don't make the mistake of basing your vote on who seems like a nice guy or talks the same way you do or goes to your church or walked ten miles in the rain every day as a child to return his grandmother's library books or who gives you a warm fuzzy feeling. In my opinion that sort of personality based voting is even worse than blind party voting.  Those things don't tell you what a candidate will do in office, they tell you whether a candidate is likable. In my activist experience I've come across many likable people who are displaying a total disregard for morality, logic and human life. Electing more people like that is the last thing we need to do.

I realize this is going to be a tough pill to swallow even for some who have been completely with me on this issue, but lean conservative or toward the belief that both parties are bad. But in this case, we really do have one side which wants to help 77,000 people get badly needed health care, and one side which wants to deny it in defiance of all morality and common sense. Is partisan loyalty really worth more than human lives? Please consider voting for a Democratic legislator. Even if they aren't elected, each vote (especially from a voter who usually votes for Republicans, Independents or Libertarians) sends a message that one party cannot hold tens of thousands of people hostage to their ideology and get away with it. Can they?

5 THINGS I'VE LEARNED AS A HEALTHCARE ACTIVIST

by Paul Gibbs

I've always considered myself a proponent of the right to quality health care, and one of the first two things that attracted me to Barack Obama as a candidate back in 2007 (the other being his opposition to the war in Iraq) was his goal of reforming our health care system. But from 2008-2012 my level of activism didn't really go beyond donating money to campaigns, voting and making phone calls to swing states in 2012. It has only been in 2013, and more so in 2014 that I've become a full-fledged activist, speaking at various meetings and events, making Entitled to Life and trying to keep up discussion of the subject with this blog. I intend to keep up being an activist both in Utah and (if possible) nationwide for versions of Medicaid expansion. After that, only time will tell whether I'll keep going with other issues which concern me, or leave the activism to others. I got involved in this issue because I felt that being someone who'd been kept alive by Medicaid made me someone people might listen to (well, actually, my longtime friend Anna Thompson from the Utah Democratic Party did, and I agreed). I'm not necessarily one to just make a lot of noise about politics in general. In my experience, angry Facebook rants and silly memes don't change anybody's mind and they do more to hinder a cause than help it. I've learned a lot about the world of politics and activism over the last year, and I though I'd share some of it:

1. Apathy can hurt as much as opposition - 
I've been very frustrated and disappointed by how difficult it has been in many cases to get liberals to speak up on this issue. A lot of that is because there are a lot of numbers and policy issues involved, making it less easy for many to feel they really understand the issue. Another is that at the same time Utah has been undergoing a very emotional debate on same-sex marriage, and a lot of political fervor has gone that way instead. Another is that people don't want to get involved in something controversial, so they simply stay on the sidelines. But considering how outnumbered we are by conservatives in Utah, we need as many liberals as we can get to speak up. Choosing not to get involved is choosing to give your opponent the upper hand.

2. Prejudice against the poor is more widespread than we think -
People who pride themselves on being liberal, open-minded and non-judgemental on nearly all other issues are often surprisingly quick to make moral judgements against the poor and repeat stereotypes about them. I've seen people who make me look like a conservative promulgate ideas about mandatory drug-testing and how owning a cellphone proves someone doesn't need help which make me cringe. It's still far too socially acceptable a prejudice across far too broad a social spectrum. The fact that somebody has less money than you doesn't mean they haven't worked as hard or managed what they have as well. You'd be surprised if you actually came to know what they're going through.

3. Refusal to compromise does not constitute integrity -
The biggest obstacle to Medicaid expansion and Healthy Utah has been right-wingers who refuse to see past their hatred of "Obamacare" and belief that social programs are bad and look at how clearly this benefits our state (it's funny how only the social programs you don't recieve help from are bad. The sheer number of conservatives I've known who talk about the evils of Medicaid or food stamps while collecting PELL Grants or unemployment insurance is staggering). But when it became clear that Healthy Utah was our best hope of getting anything past the legislature, a frustrating number of left-wingers I spoke to jumped to playing the same game by refusing to support Healthy Utah because it wasn't full Medicaid expansion. As sympathetic as I am to their desire for full expansion, it's already been shot down far too many times to have a chance at passing the legislatue. Hardlining against Healthy Utah just ends up doing the same thing we're fighting against: letting the sick and the poor suffer because our ideology comes first.

4. People can surprise you -
I've been amazed and touched by some of my poltically conservative friends who have, in one way or another, shown support for what I've been doing. And I was shocked to discover that one of the staunchest supporters of expansion I've encountered is running for the Utah State Senate as a Republican. These people have what I consider to be integrity, because they care more about what is right than about what they're told by their side they;re supposed to think. As Albus Dumbledore said "It takes courage to stand up to your enemies, but it takes a great deal more to stand up to your friends."


5.  You can do something -
I am not rich. I am not famous. I am not an expert on . . . anything. But I've managed to be heard by people across the country on the issue, testify to a legislative task force and be interviewed by a very popular national wensite. The reason for this is that when I thought "What can I do?", I chose to ignore the little voice which said "Nothing". That voice is an ignorant pessimist, and if everybody listened to it, no good would ever be done.

HOW WINNING IS DONE

by Paul Gibbs

The past week has been a discouraging one for me in terms of the progress of Healthy Utah. First, after a meeting of the Health Reform Task Force which I found surprisingly encouraging, co-chairs Jim Dunnigan and Allen Christensen made statements which somehow pulled of the amazing trick of baffling me without surprising me (at least in Christensen's case). Instead of getting from the revelation of the increased size of the coverage gap that there were far more people than we realized who needed help, they jumped to a dubious conclusion that it made the expansion far more costly. This fits the way they've been reacting all along, showing far more concern for tax dollars than for the lives and well-being of the people of Utah. But I still can't wrap my head around that point of view. I don't see how people can see tens of thousands of people obviously in need and not have helping them at the front of their minds. I really can't. And talk of fiscal responsibility makes no sense when we consider how much Utah spends on everything from containing wolves to investigating former Attorneys General to multi-million dollar appeals of federal court decisions that even Orrin Hatch acknowledges they have no hope of winning. Utah's frugality seems to only apply to helping the poor.

Then came the conflicting federal court decisions regarding the ACA, wherein one court determined that the federal government couldn't offer subsidies in states that hadn't set up exchanges, and the other determined they could. We saw partisan politics at its worst here, with the same conservatives who decry "judicial activism" when 20 some odd judges across the country make decisions completely in tune with each other and legal precedent now praise a conservative court for jumping on a glorified typo to contradict other courts decisions. Then Dunnigan and Utah House Speaker Becky Lockhart responded by saying that this complicates the Medicaid issue in Utah, with Lockhart saying it would be "unwise" to accept the federal funding at this time, and Dunnigan seeming to think this kills the idea of a special legislative session before next January's general session. It strikes me as unlikely that the anti-ACA decision will hold up, but again we see that Utah's conservative legislators (who claim to believe, as I do, in "obeying and sustaining the law") just want to strike a blow against the Obama administration's signature achievement. In Lockhart's case this is so expected that it's barely worth noting, but Dunnigan has struck me in the past as more reasonable, and I really thought we'd reached him to at least a degree with the excerpt from Entitled to Life and the testimonies of those struggling in the coverage gap. Perhaps I'm being naive, but I'm generally somewhat surprised by his reaction to these events.

So, where does this leave us? Well, at least ahead of where we were a few months ago. However much the legislators want to ignore it, it's become clear that the people of Utah overwhelmingly favor the Healthy Utah version of expansion. We gained a  lot of momentum in June and the first half of July, and I believe we can sustain it. I've decided to conduct more interviews with people in the coverage gap, either to release as stand alone segments or for a second Entitled to Life short film. Stacy Stanford and I will continue to seek after stories from coverage gap nationwide, and I hope to team with MoveOn.org to tell those stories. And I guarantee that my friends at Utah Health Policy Project and Voices For Utah Children will keep working tirelessly. We're not going to let people suffer and die because of the pettiest of partisan politics. And we need you to take the same stand. Keep emailing legislators. At least one a week. Don't ever let them forget that the pressue is on them to serve the people they were elected to represent.

Keeping in mind that I'm usually a filmmaker/critic, not a political activist, I'm going to give the last word today to the title character in Rocky Balboa, with a quote that helped my Mom when she was battling a series of strokes, and helped me during my kidney failure:  Let me tell you something you already know. The world ain’t all sunshine and rainbows. It’s a very mean and nasty place and I don’t care how tough you are it will beat you to your knees and keep you there permanently if you let it. You, me, or nobody is gonna hit as hard as life. But it ain’t about how hard ya hit. It’s about how hard you can get it and keep moving forward. How much you can take and keep moving forward. That’s how winning is done!

UNPLUG YOUR EARS, LEGISLATORS

by Paul Gibbs

At the Thursday, July 17 meeting of the Utah Health Reform Task Force, Sen. Mike Kennedy made multiple uses of a metaphor describing the federal government as a 6th grade schoolyard bully beating up on 4th grader Utah in negotiations. It's a snappy metaphor if not a very apt one. How many 6th grade bullies are trying to beat up on a 4th grader to make the child take care of its thousands of needy younger siblings? For the people people of Utah who overwhelmingly support Governor Herbert's Healthy Utah plan, petitioning our legislature has been like pleading with a petulant child who plugs its ears and screams "I can't hear you!" when it doesn't like what it's being told. But aspects of Thursday's meeting gave me increased hope. I'm not sure how much they actually heard us but I think that to some extent we unplugged their ears.

The biggest news to come out of the meeting was the revelation of just how wide the coverage gap is: according to new numbers coming from a thorough study by the University of Utah and presented by Dr. Norman J. Waitzman, the numbers are in the area of 77,000, a good 20,000 higher than the previous estimate of around 57,000 (it looks like I need to change the tagline on my posters).  This demonstrates even further how big a problem the coverage gap is. And while task force co-chairs Rep. Jim Dunnigan and Sen. Allen Christensen sited this afterwards as creating a bigger funding problem, I'm having trouble with logic behind that. In order to securely close the gap and (to comply with ACA regulations), Healthy Utah covers people up to 138% of the poverty level, well over 100,000 Utahns. So aren't we just finding out that an even higher percentage of the people we'll be helping desperately need it? And while some in the legislature have advocated dropping down to only cover 100% of the poverty level, ACA rules would mean we'd get less federal funding that way, and we'd have to pay 30% of the costs after 3 years instead of 10. I think what really concerns some of the legislators about these numbers is that they demonstrate just how real the problem is, and that no matter how many studies are done it's never going to come out saying that everybody who needs help is getting it.

Testimony from people in and effected by the coverage gap also damaged these sorts of claims  In addition to screening  7 minutes worth of my film Entitled to Life, the legislature heard from LDS Bishop David Heslington, who deals with a high number of his congregation in the gap, and told then that "the status quo is not humane". They also heard devestating testimony from Melanie Soules, a single mother of two who suffers from trigeminal neuralgia. Soules lost her job as a CEO (and therefore her insurance) because her condition rendered her unable to work.  Soules also described the severe limitations of the charity care she was able to receive, and further statements by representatives of the University of Utah Medical Center also described the strain on their charity system.

Throughout all of the testimony of those in the gap, I saw little of the cocky swagger that characterized the task force members in their May meeting (in the first hour we did see a great deal of political posturing  and taking shots at the ACA, but this subsided once our testimony began). While I freely admit I've been profoundly nervous about testifying to this comittee, most of them stayed silent when I spoke to them, and Dunnigan (who conducted the meeting) was very welcoming and gracious to me. In general the combative attitude I expected to see didn't materialize. Perhaps they simply realized how bad they'd look taking shots at sick people and religious leaders. Or maybe we're finally starting to get through. A statement by Dunnigan after the meeting gave me some hope: "We have this dueling dynamic of we need it done today to help people, also recognizing that this is an extremely large, long-term financial commitment." As much as this overemphasizes the financial commitment, it's the first real acknowledge I've heard from  one of the chairs that not only are there real people who would need this help, but they need it quickly. It may be a small victory, but it feels ike a victory to me.

Now we wait for them to move and we consider the post-meeting words of Bishop Helsington to the media: "I'm not saying to rush it through, but do it right and get to it. My background is in business, and if it took me two years to come to a solution I would be fired."

MEDICAID, MORALITY, AND MORMONISM

by Paul Gibbs


I have debated since I started this blog whether to directly address the issue of religious beliefs, whether my own or those of other Utahns. For many of us in Utah, our religious beliefs are not easily left out of anything. It's simply too fundamental a part of who we are. I myself belong to Utah's dominant religion, The Church of Jesus Christ of Latter-Day Saints. And for the record, I'm quite actively LDS. I hold a Temple recommend (I was married in the Salt Lake Temple last year) and am the Sunday School President in my Ward. And yet, because of the dominance of the Republican Party within Utah and the LDS culture (please note that I used the word culture, not religion), there is such an expectation that Mormon = Republican that people either assume that because I'm a Mormon I'm a Republican, or because I'm fairly outspoken about my membership in the Democratic Party I'm not a Mormon anymore. This is alternately amusing and frustrating to me, and I can only assume has been in the past to prominent LDS Democrats like the late President James E. Faust, the late LDS scholar Hugh Nibley, the late First Presidemt 2nd and 1st counselor President Hugh B. Brown, current U.S. Senate Majority Leader Harry Reid, and emeritus General Authority Marlin K. Jensen, who once said it would be best for the church if the idea that the Republican Party was inherently the "church party" was "obliterated".

The truth is, it is absolutely because (not in spite) of my religious beliefs that I support Medicaid expansion, and in Utah, Governor Herbert's Healthy Utah plan. In fact, it's a religious choice that compels me not to personally profit from the film, which hasn't been an easy choice to make at a time when I'm hardly swimming in funds and the time I take away from work for the film and the cause can sometimes be costly.

Now, I'm not suggesting that being a "good Mormon" requires others to feel the same way. First of all, it's not in any way my place to do so. Second, I'm strongly in favor of the church's policy of political neutrality, and their insistence that principles in harmony with the teachings of the gospel can be found in most major political parties, and I feel that should apply to those who disagree with me as much as it applies to me. But by no stretch of the imagination can I even comprehend the idea that programs like these aren't perfect examples of marrying (for time and all eternity) my religious and political principles. The sense of compassion, of caring for the poor and needy, is what drove me to leave the Republican Party and conservative movement (where I could not find it) and join the Democratic Party and liberal movement (where I could). It was actually during my service as a full-time missionary, the time in my life when i was most focused on spiritual matters, that I began to realize that conservativism didn't work for me for this reason. Because we Mormons believe we can't pick and choose which teachings of the church we follow, I believe many individual members fall into the habit of thinking the same applies to political parties, despite the fact that General Authorities such as Elder Jensen have expressed the belief that it's actually inherently necessary to us as members of either of America's two dominant parties.

As I see the judgmental attitude which so often meets those in the coverage gap and condemns them as lazy, "takers" or in any other way unworthy of help, I can't help but think of this scripture in The Book of Mormon:

Mosiah: 4:16 And also, ye yourselves will succor those that stand in need of your succor; ye will administer of your substance unto him that standeth in need; and ye will not suffer that the beggar putteth up his petition to you in vain, and turn him out to perish.

17 Perhaps thou shalt say: The man has brought upon himself his misery; therefore I will stay my hand, and will not give unto him of my food, nor impart unto him of my substance that he may not suffer, for his punishments are just—

18 But I say unto you, O man, whosoever doeth this the same hath great cause to repent; and except he repenteth of that which he hath done he perisheth forever, and hath no interest in the kingdom of God.

Frequently I hear conservative Mormons counter these sorts of scriptures with an assertion that for us to be blessed for our charity, it has to be voluntary, not government mandated. In my opinion this line of thinking is not only flawed, but carries an inherent selfishness which is contrary to the spirit of charity. It clearly states that charity is about getting blessings for doing it, not about truly caring for those who need it, which I submit is a far greater betrayal of Christ-like concepts of charity than government compulsion is. Second, so many of the same people loudly using that argument are just as loudly asserting their right to legislatively mandate their concept of morality. It makes no sense that we are morally justified in imposing our morals when it comes to who can get married but not on using taxes dollars to care for the needy. I can't speak for anybody else, but my marriage is infinitely more personal and sacred to me than my taxes are.

Even those who are stuck on LDS concepts of "self-sufficience" have nothing to complain about here. Healthy Utah is structured to include a work requirement (the most popular reason to prefer it to traditional Medicaid in the Dan Jones poll which shows Utahns overwhelmingly support the Governor's proposal). This is not at all unlike LDS welfare programs which encourage doing our part to care for own needs (but also encourage helping those who need it).

In the end, I don't think I can sum up my case better than one of my favorite LDS leaders, Dieter F. Uchtdorf of the First Presidency, did:

"Whether we are rich or poor, regardless where we live on this globe, we all need each other, for it is in sacrificing our time, talents, and resources that our spirits mature and become refined. This work of providing in the Lord's way ... cannot be neglected or set aside. It is central to our doctrine; it is the essence of our religion".

THE GAP ACROSS AMERICA

by Paul Gibbs

Entitled to Life interviewee Stacy Davis-Stanford is a perfect example of a person in the Utah coverage gap. After an auto accident Stacy has struggled with a neuro-degenerative disorder that remains untreated because she can't even afford the expensive series of tests needed to diagnose it (and can't get disability Medicaid without a diagnosis). But far from just descended into what would be an extremely justified case of self-pity, Stay has become an inspiring advocate for Healthy Utah, and for the disabled nationwide. And far from being just a sad story, Stacy is an ACA wonk who could cold make any of the so-called experts in the opposite look ridiculous without even working up a sweat.

I had never met Stacy before we both spoke at  Town Hall meeting during the 2014 Utah general legislative session (a meting attended by only six Utah legislators, though all were invited). Her story was one of the biggest reasons I cried myself to sleep that night, and why I couldn't let this go. I'm honored to call her a friend and activist colleague, and she has become one of my heroes for the way she continues to fight for the lives and rights of people who need help. She has connected with many disabled people in the current or former coverage gaps of their states. She was kind enough to share some of their stories with me. They are shared here in the words of the people who told them, as compiled by Stacy:


Konden, Arizona
when my family and I fell in the Medicaid gap (my wife and I have 5 kids). I took a full time job at northern Arizona university in flagstaff. The job paid 38k a year, which meant I just barely earned too much for state health insurance, but too little to afford my health care benefit. I finally had to drop the job after a year, as it put me 7k in debt. I'm currently on the job market again and now teach part time for two universities and a community college. Being part time, I have no benefit options. But now that AZ has expanded Medicaid, we have insurance and my daughters have been able to have well check ups. Healthcare is necessary so that families like mine can more fully contribute to our community.

Danielle , Florida

I am uninsured because I’m not ‘Officially’ Disabled and trying to get insurance on Healthcare.gov was way too much money to pay that I don’t have (since my state did not expand Medicaid). I have Fibromyalgia, Bipolar Disorder 1, Bulging disc in the L4-L5, asthma, and Generalized Anxiety disorder. I also have an undiagnosed neurological problem which I won’t be able to do anything about until I have insurance. I also have to give up some of my medicines that cost more like my preventive asthma medicine. Not having the insurance that I so badly need prevents me from going to different doctors for my different problems. I can only afford to see my family doctor and he has to play Psychiatrist, pain management doctor, and many more. I am in debt with both the hospital and My doctor which I’m not sure I will be able to ever pay off. If I had insurance, I could go to a neurologist and get an EMG done like my doctor wants me too. I could be able to get the tests I so badly need done to see what is causing my episodes I have. I could find out what’s going on with my body and get the treatment I need. Insurance could pay for the majority of my medicine. Insurance could help me slowly pay off my debts, the debts that no 23 year old should be in. Insurance could help me live and not just barely get by.


Elo, Indiana

My name is Elo, i'm 19 years old, and I'm from Indiana. I've been sick since 2010, at the age of 16. Its important to note that the onset of my sickness was immediate - I literally became disabled overnight. Which is the second important thing to note - that my sickness is disabling, and I am unable to work.

Being disabled (at least to my extent) means I'm too ill to work. Which means not only am I not able to get insurance through my workplace, but also that I have no income with which to pay for insurance.

I have applied (and been denied and thus reapplied) For disability, and am currently waiting on a court date. Disability comes with medicare, but until i am accepted I won't have any insurance coverage, I am left with the insurance coverage options which are covered by the state or government.

I have three options currently, obamacare, my states health plan which is called the healthy Indiana plan, and Medicaid.

Starting from the top: Obamacare. Because I don't have a job or much of a history being so young (or for whatever reason), the only health care option I was given was a 200 dollar monthly payment or so, with a 6,700 deductable. This is unrealistic and wont help me pay for day to day doctors appointments or medications.

So the next option was the healthy Indiana plan - which has a 6 year waiting list, JUST to get a decision. I need health care right now, I can't wait 6 years. By that time i should have disability, so that was out too.

This left me with medicaid, which I applied to, first by being under 21 years old. Unfortunately I was told that because I didnt live with my parents, or even in the same state, I was not eligible for this part of medicaid. So I tried to apply again, this time under being disabled.

It's at this point that I should mention that my state has not expanded medicaid. I did have medicaid for 2 or so years, being under 18. However as soon as I turned 19 I aged out. (unfortunately, before I could get a surgery to help with my pain).

In any case, I applied for medicaid based on my disability, and I recieved a denial letter. The reason for denial was that my illness, which has no cure, which does not magically go away, my illness which I have had for nearly 4 years now - was deemed that it would not last more than one year.
I'll repeat that. My chronic, 4 year illness, was in their eyes, not supposed to last the next year.
The reason for this denial was quite simply, because they did not expand medicaid and have to deny many people who obviously qualify for it and meet all standards and quotas.

I have several illnesses and disabilities. My main diagnosis is Fibromyalgia. Fibromyalgia can vary from being rather mild - to where a person is sore most days and needs to sleep and relax more but can function normally, to severe - where they are in constant almost excruciating pain and cannot leave the house or work.

Mine falls more towards the severe end of the spectrum, with only being able to leave the house once or twice a week and recovering from these excursions (all of which must be under 4 hours but are normally not even an hour long) for several days.

I also have a possible diagnosis of Lupus (although I lost insurance before I was able to properly research how much that was affecting me), as well as endometriosis (which i was also supposed to have surgery for, before losing insurance), as well as anxiety, depression, and a possible thyroid issue (once again - undiagnosed thanks to lack of insurance).

My quality of life would be completely changed if I could get medicaid or other insurance coverage. I'm not saying I would be fixed - I fully expect that I will be disabled and in pain for the rest of my life  - but maybe I would have less pain, or more better days, or less symptoms to deal with. I could have a plan, and emergency take as needed medications to have to rely and lean back on, as well as things that could help my overall every day health.
I wouldn't be fixed, but if I had insurance? I could be better.

Janalyn, California

Why are(were) you uninsured?
my dad is on personal disability and is unable to work due to a botched hernia repair 5 years ago. my mom doesn’t work (stay at home mom for 5 kids). we don’t make enough money to pay for health insurance. only since my parents have decided to get a divorce and my dad cut off all financial support have we been able to get Medi-Cal. i am now on Kaiser Permanente through Cal-Optima.

What is your illness/disability?
i was diagnosed with Fibromyalgia in February of 2010. i also deal with severe migraines, a hip bursitis, and chronic ear infections (8 sets of ear tubes since the age of 4). i am working with doctors currently to find out why i am losing the use of my legs as well. 

How does lack of insurance impact your health?
for the past 6 months i have been having episodes where my legs will feel 3 or 4 times the size they’re supposed to be and i’ll have painful tingling up and down my legs. i am unable to walk when this is happening. the episodes usually last 15-30 minutes long. i have severe pain in my muscles and joints, especially in my right leg, along with horrible . i have been unable to see a doctor and figure out what is wrong. i have nothing to take for the pain either. the numbness and inability to walk has been happening more frequently and for longer periods of time. i am unable to work.

Your mental health?
i have OCD, Major Depressive Disorder, and General Anxiety Disorder. pain is a huge trigger for panic attacks and depressive episodes. i overdosed a bit over a year ago, trying to get rid of a migraine that lasted over 4 months. i am currently not on any medication because i cannot afford it.

Your finances?
i am unable to work. my mom is starting up a day care in our home, but currently we only have two kids that we watch. we make less than 1000 a month for 6 people. my mom’s church provides food assistance and the rest of our money goes to mortgage payments and emergency medical. we’re hopefully going to be able to get Cal-Fresh now because my dad has stopped financial support.

Are there other ways your life is impacted by lack of insurance/how would things change if you could be insured?

i rarely leave my house because of how bad my pain is. when i am able to work with doctors and get medication for my pain and social anxiety, i am better equipped to see friends and extended family.

Alysianne, Oklahoma/Kentucky
(26 years old)

Why are/were you uninsured?
I didn't have a kid so in Oklahoma, where I was living until recently, I had no insurance.
Kentucky just changed to allow coverage for low income people.

What is your illness/disability?

PTSD, mood disorder, hypermobility (frequent joint dislocation, chronic pain, mobility issues, etc), back issues/neck issues

How does lack of insurance impact your health?
I wasn't able to get any treatment of any kind for 6 years, and slowly developed what may be seizures- which almost killed me. Just finally getting ready to see a neuro. It was $400 to walk in the door without insurance.

I have been unable to work because of my health for several years now. I've lost friendships and relationships because of it.


Gabriell, Tennessee

My name is Gabriell and I live in Tennessee. I am a full time college student who is now uninsured because my mom is on disability and thus medicare, and my dad basically disowned me so I am no longer covered on his military insurance. I do not qualify for the tax credit through the ACA because my mom and my income does not meet the minimum requirement. Because TN did not expand, I can no longer receive my asthma treatment or other medicines.

Luci, Florida

I am a single-Mom, going to school full-time, with severe degenerative osteo-arthritis non-specific, Costocondritis (chronic chest pain and tightening of chest muscles), Labrynthitis, with chronic pain and insomnia due to pain. I was the wife of Navy sailor when my body started degenerating on me. The Navy caught the Costocondritis, but doctors never did other tests (even though I constantly had issues with my joints) to catch the arthritis in its early stages. I’ve not had insurance since my divorce. I tried to go to work after my divorce but found my skills and experience lacking for most office jobs. My body could not handle manual work. So I went back to school. A couple of years ago, I was on my way to worship service, it was particularly cold and I couldn’t find a place close up. I collapsed before even making it half way across the parking lot, unable to breathe. Luckily, several people noticed and ran to help me. They got me inside and warmed me back up and I could breathe again. After that I saved up money and went to see a doctor on my own dime. I couldn’t afford everything I needed, but she at least got me a handicapped parking plaque. That has helped immensely.

I’ve lived in pain without any true relief for so long that it has begun taking a toll on my heart. March 2013, I was home alone when my heart went crazy. I called 911 and was rushed to the hospital. My BP was through the roof. I don’t remember the exact number, but the bottom number was over 200. They wanted to put me on a heart monitor to see how much damage has been done. Without insurance, I couldn’t even go see the heart doctor for a follow up – much less pay for a whole month of monitoring.

I am used to pain, I would say my daily average is 4-5 on the 10 point scale. I’ve had so much pain I couldn’t breathe. I was in constant danger of miscarrying my son when I was pregnant and was rushed to the hospital more than once in the first trimester alone for pain so bad I couldn’t see straight. I know pain.

Later in the spring of 2013, I wasn’t even using my knee at the time, and it snapped, like a twig. My doctors pushed to get me on full Medicaid (was on partial Medicaid with a very high co-pay $500 a month, I only get $500 a month in child support… so if I were to pay out $500 for my services, then Medicaid would pay the rest…. So basically have no money at all for food, rent, or basic necessities – then Medicaid will pay for my medical bills. When that’s what it takes to get medical, you do without because you need food, rent, and so forth – especially when caring for a teenager). I got surgery needed for my knee, MRIs, CT scans, blood drawn the works. That’s how we found out about the severe degenerative osteo-arthritis non-specific. A month after my surgery, Medicaid dropped me because I was supposedly not cooperating with child-support enforcement. I called child-support enforcement and they had no clue what Medicaid was talking about. Medicaid would not listen. I still do not have Medicaid. I am not healing properly, but I can’t go back to the doctor to find out why because I can’t afford it. I don’t even have partial Medicaid anymore because of this BS about cooperation with child-support enforcement.

So I have undetermined heart issues, severe arthritis which went undiagnosed for years, Costocondritis, etc… And I can’t even get basic doctor appointments because I can’t afford it. I have medical bills Medicaid was supposed to pay that have gone to collections because Medicaid in my state just went – “lol nah, you pay it.” With what exactly am I supposed to pay them? They aren’t even that much, around $500 total. I am hoping to go to Law School next year and I’ve actually removed from my search all states without expanded Medicaid because I can’t keep living like this.

Chelsy,  Florida

My name is Chelsy and I am 22 years old. In 2010 I was diagnosed with ulcerative colitis, but I have also been dealing with bipolar disorder, depression, and severe anxiety since about ten years old. When I was diagnosed with the ulcerative colitis I was fully insured by Medicaid in my state and was able to get the help I needed. It turned out that with the right medication the colitis was actually pretty well controlled and after a year and a half of suffering I went into full remission. That was with the help of a medication called Remicade, an IV infusion drug that I received every 8 weeks. When I turned 20 I was informed that my Medicaid would be taken away from me on my 21st birthday. I was devastated, there was no way I could afford my life changing medications on my own (did I mention remicade is over $10,000 per treatment?) and there even less a chance I could afford insurance on my own. I am a full time student, I used to work as well but had to quit when my illness got too severe. I live at home with my mother and her one job barely covers the bills. On my 21st birthday I was basically thrown out into the world with no healthcare and was told good luck. It has now been a year since I have had proper medical care (aside from the very expensive ER visit here and there) and it has been one of most trying years of my life. I have good days and bad days but as the year has progressed the good days are fewer and fewer. My flare ups have become more frequent and the pain more intense. Some days I have to force myself out of bed, other days I can’t even do that. I do not qualify for disability because according to the government I am not sick enough, as if there is some magical level of the deserving and undeserving. I struggle to continue school with my deteriorating health and fear one day I may have to quit altogether. If Florida had expanded Medicaid my life would be totally different because my disease is treatable. If I had Medicaid I could go to school without a worry and move on to live a productive life contributing to society. As it stands now I just don’t see that happening.

Colleen, Florida

Brief uninsured story: I am a 33 year old disabled woman from Florida, another non-expansion state. I suffer from multiple illnesses, including Ehlers-Danlos Syndrome (a group of inherited disorders that affect your connective tissues — primarily your digestive organs, joints and blood vessel walls.) bipolar disorder, and PTSD. I have no access to care beyond community mental health. my SSI application stalled for years as EDS is an unlisted/unrecognized condition. My graduate degree is basically in the trash because I am too sick to work, my retirement account gone. My family and friends are keeping me in housing. I was just released from the psych hospital again today following another meltdown, unable to cope with my illness untreated. The psychiatrist’s discharge plan: “See cardiology ASAP. Imperative. See orthopedics ASAP. Imperative. Obtain Medicaid.” My untreated physical illness has become a mental health crisis that’s given me three hospitalizations in seven months, none of which I can afford to pay for.



It would be so convenient and easy to believe that these are just a few people who slipped through the cracks. But the numbers nationwide are in the hundreds of thousands. Those are some huge cracks. Like Stacy and the rest of  the 57,000 Utahns who remain in the coverag
e gap, all they can do is wait, and hope that wisdom and compassion prevail befe it's too late for them.

THE OPPOSITION, AND WHY THEY'RE WRONG

by Paul Gibbs

Lately we've seen  a number of op-eds and other pieces in both major local newspapers. Some of have been in support of Healthy Utah or any form of expansion, some have been against it. Obviously they make very different arguments. So how do we discern the differences? Consider these factors:


 SOURCES

The pro-expansion pieces come from a variety of sources which cross political, ideological and religious lines, and use data from sources such as Harvard Medical School, one of the most prestigious institutions of higher learning on the planet (just to name one).

The anti-expansion pieces have come almost exclusively from current or former right-wing Utah legislators, and when they cite sources, most of them are connected to the Sutherland Institute, a highly partisan Utah "think tank", or The Foundation For Government Accountability, a similar Florida group. There is an enormous difference in credibility.

"THERE IS NO EVIDENCE IT WILL SAVE LIVES"

Sen. Mike Kennedy made this argument. That's where Harvard comes in, with a study which determines that 316 Utahns per year will die without expansion. That. my friends, is what we call "evidence", and from a credible source.


"LAZY PEOPLE"

The Governor's office has clearly demonstrated that the time-worn argument that these programs are a free ride for people who won't work is not true. Studies by the Governor's office conclude that 66% of the people in the coverage gap work but do not receive employer insurance.


"IT'S A TRAP"

In his Salt Lake Tribune op-ed, adamantly anti-expansion Senator Allen Christensen insists that Utah will be trapped into continuing after the three-year pilot program even if it doesn't work, citing the fact that the federal government has never canceled funding to an "entitlement" program. This argument is not only absurd, it's self-defeating. The entire reason we're still debating expansion is because forcing the states to accept expansion was deemed by the supreme court to be unconstitutional. The Governor's office is negotiating with the federal government to create rules by which both parties will have to abide, and if the deal is broken, Utah can opt out. But what if, as opponents keep asking, the federal government doesn't live up to its funding commitment? Well guys, as you said, the federal government has never canceled funding to an "entitlement" program.


"EMPLOYERS WILL DROP EMPLOYEES FROM COVERAGE AND FORCE THEM TO GO ON MEDICAID/HEALTHY UTAH"

First of all, one of the chief proponents of this notion, former Sen. Dan Liljenquist, has varied wildly in his numbers in his doomsday predictions, jumping from 40,000 to over 20,000 in matter of weeks without providing an explanation for the change.

Second, this simply hasn't happened in the states that have accepted expansion since the ACA took effect in 2012.

Third, the ACA itself protects against this with tax penalties against employers with 50 or more employees who offer health insurance yet have employees who enroll in Medicaid or equivalent assistance programs. Penalties of around $3,000 per employee. The argument just doesn't make sense.


Healthy Utah got a major boost in momentum in June, and opponents are throwing everything they have at it in desperation. But when it comes to credible arguments, they don't have much.

TRUTH, JUSTICE AND "THE UTAH WAY"

by Paul Gibbs

In the fight for Healthy Utah I've gotten used to the fact that some people simply will not be convinced. I say "will not" rather than "can not" very deliberately. This is a choice they've made. No matter what evidence or logic is presented, they choose not to hear or see it if it conflicts with their views. While many view sticking to your convictions as integrity, I would submit that doing so against all evidence and logic cannot be considered integrity when it does harm to other people. And in this case, it's doing a lot of harm.

One of the most outspoken opponents of Medicaid expansion/Healthy Utah has been Health Reform Task Force co-chair Allen Christensen. He remains unconvinced and unmoved by economic studies, stories from people in the coverage gap, pleas from Salt Lake County, or anything else. He has questioned whether the needy people in the coverage gap even exist, and then defends himself, saying "We're not heartless here". With all due respect, Senator, your other words speak much louder to those who are struggling to stay alive.

In a recent op-ed to the Salt Lake Tribune, Christensen insists that taking federal Medicaid expansion money is not "The Utah Way", and says that "Those who stand to gain by accepting federal dollars, borrowed from our grandchildren, have orchestrated a media campaign to convince us that we can’t pass up this "free" money." Sen. Christensen has seen Entitled to Life and was not impressed by it, and Entitled to Life is very much a part of the current "media campaign", and as such I feel the need to respond to his words: I stand to gain nothing from Healthy Utah. I have private insurance and will not be eligible for anything under the expansion (and I sincerely thank God every day for this fact). I have turned down multiple opportunities to make money from Entitled to Life (profit or even reimbursement for the money and time I put into it). I don't stand to make one cent or one pill off of this. I'm doing it because my Mother and Grandmother, the best Utahns I've ever known, showed me as I grew up that helping other people was always the right thing to do. My grandmother sheltered Vietnamese refugees in her home and made a family legacy of caring for the mentally challenged which my mother and sisters continued. My mother ran an organization which provided food for those who struggled financially, and gave me one of my best Christmases when she decided we should go to the family homeless shelter to give out toys. They raised me to believe the "Utah Way" was to love our neighbors as ourselves. This is why I made the film entirely of my own initiative, and why since deciding to make the film I've been so honored to work with the amazing people at Voices For Utah Children and the Utah Health Policy Project, who like me are using media to spread awareness, even though none of us will gain anything but what all Utahns will: Healthy friends and neighbors, brothers and sisters who no longer have to go to the ER because it's the only place where they can't be turned away, or simply be faced with going without medical care. I'm sorry that Sen. Christensen seems unable to understand that people might want to help others merely because we consider it the right thing to do, but it's the truth.


As for Sen. Christensen's assertion that charities can do the job of Medicaid, there are a lot of problems with that: first is the fact that my mother died penniless with Medicaid as the only thing that allowed her to receive care, because the charities who promised to help with the close to $1 million in medical bills my twin brother and I accrued before the age of 5 kept more of the money they raised than they gave her. I love charities, but they can hardly be considered the perfect panacea Christensen seems to think they are. My second reason is a huge amount of charity fundraising for my own surgeries yielded about $10,000, which was wonderful, but nowhere near enough to get me a $79,000 surgery. My third is that the free clinics he speaks of are only equipped to provide basic care, not the sort of advanced care so many people need. Creating a system of free clinics that could provide MRIs, chemotherapy, etc would at best take a very long time. And while former Utah State Senator Dan Liljenquist commented in his recent Deseret News op-ed that "some are frustrated" with how long the decision process has been, I submit that this is an absurd understatement. Some are not "frustrated". Some are dying. If you don't believe this, watch my film. You should be able to find it, it's out there as part of an orchestrated media campaign.

A CHANCE TO BE HEARD

by Paul Gibbs

On July 17, at 9am, the Utah Health Reform Task Force will hold its July meeting. Much of the focus for this month will be on Medicaid expansion/Healthy Utah issue, and this will include showing a 7 minute segment of Entitled To Life, which I will introduce. I am incredibly grateful for this opportunity to represent the people in the coverage gap and make their voices heard. After all, that's what all of this is about.

At the same time, I'm quite nervous about the experience. In 25 years of presenting various works to audiences (starting when I was kid doing live theatre and making films with stuffed animals), I've never faced an audience anywhere near this tough. While some members of the task force (Rebecca Chavez-Houck, Gene Davis and Peter Knudson, for example) support Healthy Utah, others such as Mike Kennedy and co-chairman Allen Christensen are firmly opposed to it. At the May meeting Christensen even questioned whether there really are people in the coverage gap and asserted that there are other places needy people can go for coverage (which is true for some aspects of basic coverage, but not for specialty care and other necessary aspects of medical care. You can't get an MRI or a surgery at a free clinic). You may think they've heard all of this again and again. The truth is, they've chosen not to. We need to make them hear.


I need help to do this. Words of encouragement and such are much appreciated, but what is really needed is people at the meeting who support the cause. Otherwise I'm easily dismissed as just a rabble-rousing liberal filmmaker who doesn't need to be taken seriously. For the many people who offered to help however they can, this is how you can help, and this is when we need you. Making our statement to the task force and letting them know Utah wants a special legislative session to decide this would be a major victory. A victory that 57,000 people in the coverage gap desperately need.

The meeting will be on Thursday, July 17 at 9am at the State Capitol, Room 30 of the House Building. Please be there if you can.