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Tuesday, February 9, 2010

Voices of the Uninsured

Tell 'The Nation': Voices of the Uninsured

By Various Contributors

February 9, 2010

Since the unlikely election of Scott Brown in Massachusetts, hardly a day goes by in Washington without a torrent of speculation on what loss of a filibuster-proof majority will mean for the healthcare reform legislation that both houses have already passed. But as the president recently noted, the intense focus on the process of moving the bill over the finish line has done much to obscure the actual human stakes of the policy being debated.

Particularly striking is the near-total absence of the voices of those most acutely affected by the capriciousness of our current healthcare system, the millions who have no insurance. Despite the fact that 30 million of these folks have arguably the largest stake in the legislative outcome, they're almost totally absent from the national conversation over its fate.

Here at The Nation, we have been working to right this in our own small way. We've spent the last two weeks searching for stories from the uninsured. Despite our chosen tools (Twitter and e-mail), or perhaps because of them, we received 185 responses from a diverse group of people. From recent college graduates, to struggling single parents, to recent retirees, the storytellers ranged vastly in age, background and occupation. However, a common thread held them all together: the anxiety and uncertainty that comes with being uninsured.

Many stories expressed great, unshakeable fear that one medical emergency would ruin them. "I would say my wife and I are one medical emergency away from losing everything, but actually I've pretty much resigned myself in my head to the reality that if I have a medical emergency I am going to die," says a used-book seller in California.

The responses included wide array of opinions and varied hopes for the future of healthcare reform, but what an overwhelming majority agreed upon was that the United States government, particularly Congress, had failed to represent them within the debate. "Why can't the general health and well-being of the American population be too big to fail? " asks one Massachusetts woman. Distraught and disappointed, many have given up on the possibility of change. "They are all out-of-touch, rich career politicians who care more about getting elected than if we die," says a woman from Ohio.

Ultimately, the full stories you'll find attached hope to bring this discussion back to where it belongs. We hope to ground the debate in the painful realities that people face every day: pre-existing conditions, inconceivably high premiums, medical bankruptcy and considerable pain. To root the conversation back in compassion and consideration for those most in need.

Perhaps by allowing these voices to be heard, they will become impossible to ignore.


In College and Out of Insurance

I haven't had health insurance since I was 18. I'm 23 now. My health started to take a turn for the worse around two to three years ago. I currently have many conditions--TMJ, tendonitis, spinal problems, poor eyesight, poor dental health, etc., and I almost never see doctors or dentists because they're so hard to afford on a student budget.

I once had insurance for three months but it was cancelled after I had trouble paying the premiums on time. Now I can't get insurance from anyone due to pre-existing conditions, and I've applied multiple times to every carrier on eHealthInsurance. There are no options for me in the US, except to pay out-of-pocket, which is wildly expensive. I can't even move to another country because I'm still in college.

I have been living with these conditions too long and I really don't want to do it anymore. I've been suicidal for a while and my one hope was health insurance reform (specifically the interim high-risk pools, ban on rescission, and the extension of maximum age on a family plan to 27). I've been happier for the past month since the Senate bill was passed, but stunningly, that all went away because of the sudden rise of Brown's support, which virtually no one saw coming. Politicians almost always defend lack of progress by citing how slow Congress moves and how it's not an institution that makes sudden and/or radical changes, but this election at least partially proves them wrong.

So my hope is almost completely gone and I don't want to continue living with these conditions.

J. Travis Rolko, 23

A Member of the Country's Invisible Poor

In a letter sent to the White House:

I've been coping with chronic pain and autoimmune dysfunction throughout my life and, as it has with far too many others, it has become debilitating. An ever-increasing number of the population is living with these invisible illnesses. Due to the very nature of these symptoms that are hard to track and harder to see, medical care is seldom pursued or even available until one's quality of life is severely diminished. I reached that point years ago, once I was no longer covered by my parents' health plan. My husband and I live paycheck to paycheck, so insurance has never been an affordable option. Doctors can do little more than guess once the few tests I can afford fail to provide answers. Healthcare clinics and employee benefits are equally outrageous in price and too seldom available.

We are members of this country's invisible poor, hiding in plain sight as job-seekers and rent-payers who look the part of middle-class America but are struggling to buy groceries, much less medical care or insurance. In the current status quo, I am neither recognized as poor nor ill, but am living with the constantly increasing pressures of both. A healthcare system that takes into account not only affordability and availability but allows for the many different circumstances American citizens find themselves in can literally begin giving me, and those like me, our lives back.

My husband is currently laid off, and has been since December. I got significantly sicker during my last job (yet have no diagnosis). We cannot afford a vehicle (but have been consistently just above the poverty line), and have not had health check-ups in years (due to continually rising costs). We deserve, along with every citizen against whom there is a financial bias, to do more than survive; we are ready to thrive.

I've done mostly retail over the years with a stint in theatre as a stage manager. My last job was manager of a Hollywood Video in Fountain Valley, California. My husband is a writer-for-hire whose last job was the manager-on-duty at the Palm Springs Hilton. Finally, allow me to say that I'm very invested in healthcare reform. As frustrating as the process has been, I have to believe we can get something signed that at least gives us a platform to work from. Congress needs to stop buying into rhetoric, allowing things like a sixty-vote requirement, and pay more attention to policy than politics and simply care more about their constituents than their own asses.

Dorian Rhodes and Dave Rhodes, 41 and 50

Will You Stop Fighting, and Listen? We're Dying Out Here

Our son has been severely disabled since birth; he is wheelchair bound and cannot sit, stand or walk on his own. He is also developmentally handicapped. We have a $5 million lifetime insurance cap, and are about to hit it. My son is 11, and last Christmas (2008) he had an almost $600,000, thirty-day hospital stay. If that happens again, I'm doomed. Add to that almost $1500 a month in prescription food, $100 a month in diapers, wheelchairs, etc. and the costs are staggering. It is no wonder most bankruptcies are medical, and those folks have insurance.

We're dying out here, and the Congress wants to fight about... what are they fighting about again? I forget. Oh yeah, they're mostly fighting for the folks that pay them to be there: insurance companies. I sent my letter to President Obama and almost every member of the Senate, to no avail. With the announcements from Pelosi and the Supreme Court, I fear I am well and truly screwed.

I am, frankly, disgusted. Not just by the demise, but also by the way the Democratic "leadership" (and in the case of Senator Reid, I use that term quite loosely!) has conducted themselves in this matter. Having, first Joe Lieberman, and then Ben Nelson, and a parade of other Democrats hold the process hostage was disheartening, to say the least. The idea that somehow, we Democrats need a super-majority to fix a mess that a simple majority of Republicans created is just downright stupid. If Lieberman wants to filibuster, make him stand up on C-SPAN and read the phone book make him look like the ass that he is acting like. And start by taking his chairmanship away.

I fight with United Healthcare, and Ceridian (who manages our healthcare spending account) on a weekly basis, and I'm tired of it. Add to that the impending lifetime benefit cap, and the inability of me (and my family) to move from state to state--my Medicaid coverage is not portable!--and I'm trapped. On top of that, there is no consistency of coverage from policy to policy. So, for instance I work (this week) for Sun Microsystems. We have a defined set of benefits, as negotiated, and are actually self-insured (though the program is [mis]-managed by United Healthcare). But next week we are being taken over by Oracle. How will my coverage change? I have no idea. There is no basic level of coverage either mandated or provided by the federal government. So I have no idea what will happen.

I'm not panicked, yet, because Medicaid covers my son. But that's not portable, so should I get transferred to another state? He would fall out of Medicaid coverage, and would have to get on a waiting list for Medicaid waivers. Currently, the state of North Carolina is considering increasing the Medicaid co-pay to 30 percent. If I had to pay 30 percent of $600,000, it would ruin me.

We need single-payer. We need to remove the profit motive. As I've said for over a year now, this has not been correctly framed from the beginning. It is not healthcare reform. It is health insurance reform. Our healthcare is pretty darned good. Our insurance system is shameful. The former CEO of UnitedHealthGroup was paid $129M one year. one year. That's money that could have been spent on medical care. But it was wasted.

Obviously, I could go on and on and on forever. I've tried meeting with my Congressional representatives. Senator Kay Hagan "didn't have time" and Congressman David Price wasn't available until Contessa Brewer wanted to interview me on MSNBC, at which point he was magically available. Obviously last week's Supreme Court ruling will only make our Congressional representatives less available and less responsive to individual constituents so that they can pay better attention to corporate sponsors. We spin further and further out of control.

Have you had enough yet? Believe me, I have. But I have to fight on. I have no choice but to continue this fight until a solution is found that serves the needs of my son, because he cannot fight for himself.

David G. Simmons, 46
North Carolina

Why Couldn't My Tax Dollars Pay to Save My Stepfather's Life?

I lost my job a year ago, and I don't have health insurance. I'm 37. My stepdad did have private health insurance--he was healthy and fit, and paid hundreds of dollars a month. And when he did get sick with a rare cancer, we had to fight for every appointment and wait months for others. His cancer spread quickly and he died within several months, but I believe the insurance companies caused his death. His illness was treatable and he could have beaten it.

It's been a few years and I still miss him.

I actually hope the current version of the healthcare bill fails. I cannot afford insurance right now--and to be put on my husband's insurance will be over $300 a month, and that's with Kaiser Permanente; I haven't had good dealings with them in the past.

In any case, the bill currently punishes people with fines for not having insurance, and it's just wrong. It's a giveaway to the insurance companies, and that makes my blood boil. At the very least, we need a public option, but I'm a single-payer girl. I just refuse to believe that those moronic teabaggers are the majority opinion in this country. I know they aren't, but you'd think they were with all the attention they get. I'm also an "average Joe." I've worked all my life and paid taxes. I'm sickened (pun intended) that my tax dollars pay for war and death, and not saving people's lives, like my stepfather's.

Jennifer M., 37

Do the Right Thing--Start Leading, Stop Following Lobbyists

I'm a single mom on the verge of declaring medical bankruptcy. I was forced to sell my home. My son, now 17, and I live with my 89-year-old mother (illegally) in a retirement community. For the past year, we have shared a 10x10 bedroom roughly the size of my old walk-in closet. I have two college degrees and I am now working only fifteen hours a week as a church administrator. Due to a pre-existing chronic medical condition, I am not able to buy insurance (even if I could afford it). As a result, it is being left untreated.

I am absolutely dismayed with the Massachusetts election outcome and its potential ramifications for healthcare reform. Whether on moral/ethical grounds, as a human rights issue or viewed solely on the numbers, I do not understand how anyone could be opposed to healthcare reform in this country. If conservatives want to stay away from the "touchy/feely" views, fine. However, how can they not see the bottom line? The costs of no healthcare reform far outweigh the costs of the status quo. We have a failed system and it is affecting everyone.

I'd like to see Congress actually represent the people and not corporate America. I'd like to see Congress develop a spine, some ethics, locate their hearts and do the right thing. They all know what that is, but are all in bed with Big Pharma and the insurance industry and the fear of not getting re-elected outweighs everything else. We need healthcare reform and not a watered-down version rubber-stamped by the above. We need our elected officials to actually lead and stop following lobbyists.

Suzi Spagenberg, 49

We Need Real Protection

I've honestly suspected from the get-go that neither the conservatives nor the liberals really care about healthcare reform, and that both sides have done their best to silence the progressives, who do. Frankly, the more cynical part of me is not the least bit surprised. I find it train wreck level interesting, that at the first little excuse the Democrats start to drop even making an attempt at healthcare reform and run in the opposite direction.

As for my investment in healthcare reform, being working-class poor, it's a bit like asking someone on the Titanic if they feel invested in the ship's sinking. I'm in this boat so there's no way for me not to be invested. Last year my wife and I both came down sick at the same time. We were living in West Virginia at the time, and it was during the weeks of the big freeze, twenty below zero at night and zero during the day, and we both came down sick with what we suspected was a sinus infection. Our solution? Swallow enough symptom suppressors to be able to sleep, and enough to be able to work, and hope that it wouldn't get any worse.

I want Congress to pass the bill that is most likely to pass (sadly, I know that is the Senate version) and then use reconciliation to put the public option back in play, and if it fits within the boundaries to also put the individual mandate on a trigger so it would not kick in for at least ten years. Then they should prepare to be dogged by progressives until they perfect the legislation, so that it offers real protection and access to healthcare that doesn't turn into vaporcare the first time you try to use it.

RFT, 36

One Pretzel Hit Cost $500--This is Not the American Dream

I have healthcare. However, I recently took legal custody of my 11-year-old cousin, and because it's residential custody and not full, he is unable to be put under my insurance. His mother is on welfare. Before giving him up to my custody, she let his New Jersey Family Care insurance lapse. So right now we're waiting to see if we qualify to cover him. If we make too much money or don't jump through the proper flaming hoop, then my cousin will remain uninsured. He was recently hit in the eye with a pretzel while having lunch at school. It required an ER visit. I now have a bill of over $500.

The demise of healthcare scares me. I am a stay at home mom and paternal caretaker. Besides the 11-year-old, I have a 6-year-old autistic son and an aging, wheelchair-bound mom, who has been diabetic for over thirty-six years and is now on Medicare. One bad illness will bankrupt us for generations, and aid for my son's lifelong autism ends at age 22.

This is not the American dream. This isn't even basic compassion.

Shea Murphy, 35
New Jersey

The "Obscene Meanness" of America

After hearing Senator Jim Webb say that "The American people have spoken," when the Democrats lost the Massachusetts special election, I was so completely incensed that he or anyone could come to that conclusion, when the people of Massachusetts who have healthcare elected an anti-healthcare candidate.

My husband and I are educated, intelligent, unemployed and in our mid-40s. I am a writer and he is in commercial insurance. We used to rely on his employment to cover the entire family. He has been unemployed for more than a year. We could not afford the COBRA, and indeed can barely afford our mortgage. All other creditors are waiting in line until we get back on our feet, and I have several herniated disks. I live in pain and anxiously await a healthcare plan that will provide me with an opportunity to get the surgeries I need. My husband was raised in London and is so discouraged with what he calls the "obscene meanness" of our system. We have contemplated uprooting our entire lives, to move to England, just to get the surgeries I desperately need. It is difficult to understand how the American people can stand for this and how our politicians can come to the insane conclusions that we do not want it. Howard Dean seems to be the only person talking sense on the pop-culture news.

We have three adult children who are struggling for insurance. My 25-year-old son graduated from American University and lives and works full-time in DC and is covered for now, but he is planning to leave work to get his masters. He has had major back surgery (scoliosis) and can never afford to go without insurance. My 23-year-old daughter works part-time at an advertising agency and part-time pursuing her career as an artist (for which she studied at Boston University). My 21-year-old son is in school at American University, covered for now, but also had major back surgery (stenosis) and cannot go without insurance.

Again, we could not afford the COBRA for ourselves, let alone to help the kids, even if we were allowed to cover them. It's killing us.

Angela Combs, 47

Beside Myself, Waiting for Change

I was diagnosed with throat cancer on Tuesday, January 12. I am unemployed and have no health insurance. I intend to get the care I need. My doctor has not turned me down, nor has the hospital for treatment. I anticipate the bills will begin soon and I will not be able to pay them. Prognosis is 80/20 for recovery with radiation and chemotherapy. I have a notion I am going to face something nastier than cancer in my life: bill collectors. So it begins.

My occupation used to be an administrative assistant. The last two positions that paid well were transferred to different states so my job was gone with them. At 59, with the tight job market, I am not getting any offers. And now, with this diagnosis, there really isn't going to be a job.

I've been beside myself with the Democrats not coming together at once to pass healthcare, and I am livid that just a few people held it hostage. I've tried to do my share by signing petitions and beating up Evan Bayh. This was before I knew I was ill. I think Congress should pass some scrap of something. I wanted the public option. I also hoped they would lower Medicare eligibility to 55. That was selfish, of course. Still, they must try to do something, if only to have it to build upon. They are crazy to think this will come around again this generation.

Sarah Hurt, 59

Get Tough For God's Sake and Ours

My brother is losing his COBRA on February 28. He recently was hospitalized for a heart attack and stroke.

It is difficult for my brother to type since his stroke. I have been researching to find him insurance. There is nothing affordable since he is out of work. Part of the reason he had his stroke/heart attack was because he had cut back on his medication due to finances. His cardiologist told me he keeps seeing this, people who can't afford medication and they stop taking it, which causes dire complications.

Even with health insurance, he owed the hospital over $5,600 and rehabilitation about $2,000. We were able to have the hospital bill "forgiven" after proving my brother had no money. The hospital has a charity fund we applied for; we are applying for the same for rehabilitation. We live in Charlotte, North Carolina, and there are low-cost medical clinics for people who are not more than 20 percent over the poverty level. This is what I have been looking into once COBRA runs out. My brother is not eligible for Medicaid since he is a single male. He lost his job and his house last year so is now living with my husband and I.

I went through a similar instance with my daughter when she graduated college in 2007 and went off our insurance. She had an ultrasound due to menstrual cramps earlier that year and it was inconclusive. Not one insurance carrier would cover her because of the "inconclusive" diagnosis! She took no medications and her doctor wrote a letter to the insurance companies. Eventually she was able to get insurance when she found a job, but the immorality of this made me so angry!

I have been fortunate because I have had good healthcare. However, now that I have someone in my family who has no insurance, it makes me very angry. I have been following healthcare ever since Obama took office.

I want to see the Democrats get tough, for God's sake. I love Obama, but he is too damn nice. Why can't we get fifty-one Senate votes and go for reconciliation? I tell everyone about my brother and tell them that it could happen to them. We elected Obama to be the president who would finally get healthcare done. He needs to get tough and do it. The Republicans only want him to fail for their own selfish political needs. They couldn't care less about the American people. They don't want him to go down in history as the president that got healthcare.

LR and BT, 55 and 51
North Carolina

Is Congress the Opposite of Progress? I Hope Not

I used to be covered by my mom's insurance, but I couldn't afford this semester of school and they cut her, so now both of us are uninsured.

She's 56, works in retail as a salesperson. She's been there for almost twelve years. I'm 21 and currently work a few hours a week as a homemaker. They started cutting her hours in September, but I was in college at the time so we somewhat had coverage.

It bothers me greatly that there's the possibility but no progress with the healthcare bill. I tore the ligaments in my shoulder a few years ago and had I not been under my mother's insurance I'd have to pay $1,500 per MRI. Hospital bills have prevented me from going on with education. I was supposed to have surgery, but couldn't afford it. So now we're sort of at the edge. We can't get sick or anything. Honestly, the Senate bill does bother me. But I can't expect a huge change right away. In my opinion, it would be a baby step toward progress. A friend once told me "If con is the opposite of pro, is Congress the opposite of progress?" I hope not. I wish Democrats would unite. There are worse cases than mine.

Bisera Rozic, 21

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