|
I guess it's true. God gives you what you can handle.
I'm an older American. But I also have an adult child with a disability. I fought like hell when he was younger. I flooded him with as much therapy as we could afford. I fought health care policy by testifying before the NJ Banking and Insurance Committee for Mental Health Parity. It passed out of committee and became law but never helped our family because my husband’s employer, like many, was self-insured. State level laws didn’t apply to them. We had to wait for Federal legislation. I bitched a woman from our health insurance company out on the phone when she told me that they had already paid their $2,000. that year and they wouldn't be paying any more. Our health insurance paid 50% of Reasonable and Customary charges up to a maximum of $2000.00 per calendar year, which meant we could be charged $100.00 for a visit and they would approve $65.00 and pay 50% of that. They’d pay $32.50 and we had to pay $67.50. I asked her if that meant he was cured? She didn't have an answer. After federal Mental Health Parity passed and health insurance companies devised a new way of limiting coverage by only paying for a limited number of visits per year, I negotiated "creative" arrangements when my son needed more than 26 speech therapy and social skills therapy appointments per year. I remember what pre-ACA was like because I knew what every limitation in my husband's health insurance meant. Whenever his company switched benefit plans, I was the first one to call the HR Dept with questions they didn't have the answers for. "I'll have to get back to you with that answer." I've heard that more times than I can count. And I never want another parent to have to hear that again. Arlene S.
0 Comments
Note from NoProvisions: Lyn's story reminded me of few months ago when Graham-Cassidy (the first one) was in the spotlight. CNN had a healthcare debate featuring Sens. Bernie Sanders & Amy Klobuchar and Lindsey Graham and Bill Cassidy. The Potter family wanted to know how their daughter (who endured two bone marrow transplants) would be protected with their proposed legislation. Sen. Graham proudly told the Potter's that in South Carolina, they'd be fine (narrators voice: they wouldn't). Trouble was, the Potter's live in Ohio.
So what Senator Graham was saying was, "Get sick? Come to South Carolina. Quit your job (which provides your insurance), leave your family and community ... find a new oncologist... and once you settle down, hopefully you'll be able to get that life-saving, time-sensitive treatment you were counting on). Ridiculous. Thank you for trusting me with your story, Lyn. My story began in 1987. In my mid 20’s, a nurse, recently married. I suffered a severe grand mal seizure that set in motion a catastrophic illness that has affected virtually every body system, left me severely disabled, with not 1 but multiple, life threatening conditions. I was also diagnosed in 2012 with multiple myeloma --currently an incurable cancer affecting plasma cells in bone marrow. I have spent a good portion of the last 30 years in one hospital after another- often for weeks or even months & in spite of having employer sponsored insurance when my illness first struck, the financial devastation has been enormous. I had met 2 lifetime limits already & was close (very close) to a 3rd when ACA protections went into effect. Pre-ACA --when I wasn’t in hospital fighting for my life -- I was fighting insurance companies, fighting waiting periods where nothing was covered and fighting life time cap limits. The only way we survived was having to move to a different state, husband change jobs, & suffer thru the long waiting periods (years) where nothing “pre existing” was covered even though we were paying huge premiums. Essentially locked out of the system, I was able to finally get on SS disability because in order to save my life, I needed to be admitted for multiple week stay to a specialty hospital for lung disease in Co. I had to have medicare in order to go since my husband's employer coverage was still in waiting period, but, as we found out quickly, even with medicare, we were still left with medical bills that I will never be able to pay off- not even in 3 lifetimes. It’s enormously stressful to be sick. That stress multiplies 100 fold when you’re sick & fighting insurance companies. I was very close to losing my husband's employer coverage yet again when ACA was passed & even though I do not get my insurance thru the ACA, the protections it provides are saving my life if repealed, I will be over lifetime cap limits immediately & am terrified of being -once again- locked out of the system, while requiring weekly chemo to keep my cancer in as much check as we can. My husband is at retirement age so there can be no more job changes, no more moving to get coverage. Repealing ACA protections will cost lives of all like me, fighting catastrophic illness & I am terrified. I have managed to somehow survive against all medical odds, but after more than 30 years of this battle, not sure that the stress from once again having to fight ins companies won’t be enough to bring my battle to an end. Nobody should have to go thru this. Nobody. -- Lyn H. Thank you, Jessica, for sharing your story.
I was 20 or 21. Had left the fast food job I'd been working at because had found a tech support job that offered better pay and better benefits. After the job interview, started working night shift on a probationary period in November. Come January- almost through my ninety day probationary period- and the husband starts vomiting. Daily. Can't keep anything down. We go to the emergency room, they diagnosed him with the flu. Some anti nausea medication, a fluid top off, send him home. While we're in the waiting room, he vomits again. I make arrangements for a second opinion at the VA. We get to the VA, start the processing, he qualifies for coverage. While we're processing at the VA, THE ER sends us a bill, I don't remember how much. I do remember sitting in our kitchen with that bill in front of me with the washer running and explaining that the person they'd diagnosed with the flu actually had stage three metastatic colon cancer. The VA notices we have private pay insurance through my employer, so they cheerfully submit a bill. I get a letter in the mail: my husband was denied coverage because of a preexisting medical condition. I get another letter on the heels of that: denied state level Medicaid because I have employer based insurance. The VA covered him, in full. He died a year later. If we'd had the coverage, he might have been able to get the colonoscopies that would have detected it sooner. And I would not have had to bury a husband at 22. Jessica H., College Station 5/24/2018 Cautionary Tale: Welcome to 2009! Tax Law & Mandate Repeal Take Us Back to the Bad Old Days of InsuranceRead Now"The Republican tax law is not what my business needs to create jobs and grow. I’ve talked with my accountant, and the nominal tax cut I might receive won’t cause me to grow my business or hire more employees.
"In fact, this tax law makes me worried more than anything. I’m worried about my employees and customers access to quality, affordable healthcare. In order to pay for the tax cuts to wealthy corporations, Republicans are sabotaging the ACA by repealing the individual mandate. Coupled with other effort by the Trump Administration, including the expansion of short-term and junk health plans, premiums are increasing by double digit numbers, while the quality of coverage is decreasing. "I started fighting for the ACA in 2009, when I was actually running my dad’s small businesses. We had been searching for insurance for years, and preexisting conditions were the biggest stumbling block. The failed system that was in place made it unaffordable for us to provide health insurance for our employees. The policies we were shown also denied health benefits for several of our employees due to pre-existing medical conditions. "Knowing that most of our employees had no health insurance in place, and had no way of paying for it on their own, was a huge concern for us. We knew that an illness or an accident could put our employees in a situation where they had to choose between getting the medical care that they need, and paying their rent/mortgage, putting food on the table or keeping the heating on during cold Iowa winters. Those aren't choices anyone should have to make. "After passage of the ACA, we were able to put a plan place for our employees that did not exclude their pre-existing conditions. When I opened Popcorn Heaven in 2014, I was grateful to have an affordable health insurance option for my employees. "To go back to where we started from doesn’t make any sense. Our Members of Congress, and especially Representative Rod Blum, need to start making some smart decisions, and undermining access to lifesaving healthcare to give trillions of dollars in tax cuts to their wealthy donors is NOT one. It is putting us into a tailspin." - RESHONDA YOUNG, OWNER OF POPCORN HEAVEN IN WATERLOO, IA ReShonda Young is the owner of a gourmet popcorn franchise called Popcorn Heaven. Popcorn Heaven is headquartered in Waterloo, IA with locations in Des Moines, IA; Kansas City, MO; Peoria, IL; Charlotte, NC and soon in Waldorf, MD. She serves on the Executive Committee of the Main Street Alliance, a national small business network. Source: https://democrats-waysandmeans.house.gov/reshonda-young-owner-popcorn-heaven-waterloo-iademocrats-waysandmeans.house.gov/reshonda-young-owner-popcorn-heaven-waterloo-ia  I originally met Theresa Pussi Artist BrownGold in a healthcare advocacy group online. When she learned about my husband's story, she was interested in painting his portrait for her Healthcare In the United States series. Maybe one day I'll post his portrait in this blog, but for now, these are the stories that I'm worried people have forgotten or ignored -- classic cases of "Well that happened to them, but it couldn't happen to me." I encourage every reader to visit Healthcare In the United States. (oil on linen, 40 ins. x 30 ins.) (Interview 10/2011) Adjunct Sociology Professor, Writer, Health Advocate, 38, Insured. Previously, High School Health Teacher, 27, Insured (during time of health crisis) : On the morning of January 29, 2001, subject heard her own voice slur as she was saying goodbye to the dog and leaving for work. She kept repeating her words to listen to her own babble. Her face went numb. "I'm 27," she said to herself. "A stroke can't be happening to me." The symptoms went away. She drove to work. A co-worker suggested she might have Bell's Palsy. On February 2, four days later, while the subject was teaching her class, the symptoms reappeared. This time she went to an emergency room. She got a CAT scan and was admitted to the hospital at 11:30 at night. If the subject had gone to the emergency room when she first experienced symptoms on January 29, she would have been uninsured. Her 6 month waiting period to be eligible for health insurance coverage at her teaching job did not start until February 1. She went to the hospital on February 2, one day after becoming eligible for insurance. The subject talked to the office assistant at the school where she taught. "The woman was sweating it out counting the months until I was eligible for health insurance. Had I gone to the hospital when I first had symptoms, I would have been uninsured. I qualified for insurance by ONE DAY! " The subject spent a week at the local hospital where they confirmed she had had a stroke. They did extensive blood work, a spinal tap and checked for multiple sclerosis and lupus. A month later her neurologist sent her to a teaching hospital in a neighboring state. She consulted two hematologists. She was diagnosed with a clotting disorder. Subject, being a first-year teacher had to take more sick time than allowed. Her wages were garnished to cover the unapproved sick time. Her take-home pay was almost nothing. At the time, subject's husband was a full-time graduate student. He was not earning any income. The family had little income. To stop subject's wages from being garnished, her co-workers offered to give her their sick days. This was not allowed by employer. Instead, coworkers covered for her when she needed time off to go to the doctor. The doctors at the teaching hospital were "out-of-network", as the subject would later discover. Many of their charges were not covered by her insurance. However, the lab tests done at the hospital were covered. The hospital would "pay for the MRI to be taken but they would not pay to have it read." Subject first realized that a big chunk of her medical care was not covered when the "bills started rolling in," as she put it. At 27 years old subject found herself spending much more energy dealing with her medical bills than on figuring out her medical condition."I was naive. I didn't know the game, the tricks. So many bills. I asked the billing department why something wasn't covered. They didn't know. Maybe blood was taken in the hospital but sent to a lab out-of-network. I'd get a bill for $500 which was 75% of my paycheck. I was lying in the MRI machine thinking 'How much is this going to cost and am I covered? How much more fighting am I going to have to do over this bill?' I was ill but most of my energy was spent on the medical bills and trying to stay afloat. I became afraid of the mail. I'd recognize the look of the 'Explanation of Benefits' envelope and wonder who I was going to have to fight." Subject was getting notices from collection agencies - first, second and third notices. Panicked, she gave them a credit card number. " I am a very responsible money manager. We never had credit card debt. I became very desperate. Now I was paying 19% interest on hospital and doctor bills. I should have had a payment plan. But I got scared because of the collection agencies....expensive mistake. Then I learned the game. I turned into a crazy person on the phone with customer service." At one point subject hyperventilated on the phone with a customer service representative. But eventually, she learned the language of doctors' billing departments. She would make sure that her procedures were coded properly to get the most payment from the insurance companies. "The stroke was easy. That was nothing. Health insurance and billing were tough. It's an industry with no controls. Where is the responsibility for the product?" After a year of intense wrangling with billing departments, $8,000 of uncovered medical claims, hours on the phone, credit card debt, subject said she "dropped out." "I just wanted peace -- relief from the financial nightmare." Finally she just asked the hospital's billing department, "How much do I have to pay to keep you off my back?" Twenty-five dollars a month. Although still in debt, she would not be hounded by the collection agencies. "I was paying for peace." Subject was seeing her hematologists every 3 months. Eventually she just stopped because she felt her disease was being managed and she did not want any more bills. In 2002, subject was diagnosed with Crohn's disease. She knows this is another "pre-existing condition" on her medical records. And she knows she cannot have a lapse of coverage or she could end up uninsurable. "I am more experienced now in playing the game." Today, subject is insured through her husband's job. She has been careful to never have a lapse of health insurance coverage. She takes daily medication for the blood clotting condition which allows her to lead a full and productive life. (Interview October 2011) (oil on linen 40x30 in.) Statement from the subject: I was plagued by uncertainty and fear of screwing up by going to an appointment that wouldn't be covered by insurance. What if I didn't jump through the hoops right? I have insurance but no faith the appointment would be covered. I feel like the insurance companies try to confuse you. In our system you have to be your own advocate And most people are not told how to do that. I carried my medical records to all my appointments to educate the doctors. Electronic medical records would prevent costly mistakes. Even if I was told something was going to be covered, I had no faith that it would be. The system is broken. Artist's Note: At the start of the interview, the subject showed me a stack of files about 5 inches thick. These files contained correspondence with her insurance company about her coverage for her stroke. The ordeal inspired Holly Gonyea Dolan to travel her state,Pennsylvania, to interview folks and explain the Affordable Care Act by using the circumstances of their lives. The results of her one-year journey can be found on her blog, Health on the Horizon. http://healthonthehorizon.blogspot.com/  I originally met Theresa Pussi Artist BrownGold in a healthcare advocacy group online. When she learned about my husband's story, she was interested in painting his portrait for her Healthcare In the United States series. Maybe one day I'll post his portrait in this blog, but for now, these are the stories that I'm worried people have forgotten or ignored -- classic cases of "Well that happened to them, but it couldn't happen to me." I encourage every reader to visit Healthcare In the United States. (oil on linen, 40 ins. x 30 ins.) (Interview 5/2011) Former Heavy Equipment Operator and Excavator, Uninsured, Age 53: In 1991, while insured with a large excavating company, subject had twins premature by 3 months . The company was self-insured*. The subject did not know that his health insurance policy had a lifetime dollar limit for claims. Medical bills for his twins reached and exceeded that lifetime limit. The medical care over several years for his premature twins totaled over a million dollars. Subject’s wife quit her teaching job to care full-time for the twins and two older children. Subject took a second job as a cashier at a beer distributor. The couple sold a rental property to pay some of twins' hospital bills. By 1999 subject had a new excavating job with health insurance benefits, but was laid off after the Crash of 2008**. After fits and starts, and hopes and promises of re-employment, company finally folded in 2010. With savings spent, and medical bills still looming, couple went bankrupt. Attorneys for the hospital and mortgage company went after their primary residence. "We held on for as long as we could. " Couple paid a portion of the mortgage payment every month. Couple was eventually given 72 hours to vacate the premises. On a Monday morning at 7 am, a sheriff oversaw the family's expulsion. The couple found a home to rent for $750/month. The couple eventually separated (no money to get actual divorce) which subject believes is largely attributable to the stress caused by dire financial straits. Subject now lives in a trailer he inherited from his deceased mother. A local clinic helped him get back surgery from a local hospital system for which he received bills for $93,000, $7,000 and $5,000. Subject has no idea how he will pay the new hospital bills. Subject was also diagnosed with a heart condition which runs in his family. Although the hospital has some money for “charity care,” they said they do not want to see him again until he has insurance. "I cannot mentally or physically go through it again." Subject did not qualify for assistance because he has a trailer valued at $58,000 (inherited from his mother), a 1996 Jeep and $400 in the bank. Subject is trying to get disability health benefits. "I've been an excavator for 37 years. That's all I know. At 8 years old I was stacking block for my dad. I don't understand the system. I'm trying to get medical assistance." Subject quoted his senator as saying, "There will always be poor people." ARTIST’S NOTE (2011) The twins are young adults now. That's how long this subject tried to keep it together. All his children are doing very well today. And they are very close to their dad. This subject was strong, gracious and kind -- disillusioned with the system but not broken. I wonder if we are not squandering the working capital of people. Americans' efforts could be better spent growing this country and economy. Instead, people's best selves are depleted trying to survive a medical system that bankrupts them. *Here is what I can say about “self-insurance” in my own words. Very large companies can collect the premiums from their employees and set up their own accounts from which to pay claims. One can imagine just how large these pools of funds need to be. The businesses then hire an insurance company to administer the plan but the money belongs to the company itself. See below * SELF-INSURANCE (from Wikipedia): is a risk management method in which a calculated amount of money is set aside to compensate for the potential future loss. If self-insurance is approached as a serious risk management technique, money is set aside using actuarial and insurance information and the law of large numbers so that the amount set aside (similar to an insurance premium) is enough to cover the future uncertain loss. **THE CRASH of 2008-2009 (from Wikipedia): On September 16, failures of massive financial institutions in the United States, due primarily to exposure of securities of packaged subprime loans and credit default swaps issued to insure these loans and their issuers, rapidly devolved into a global crisis resulting in a number of bank failures in Europe and sharp reductions in the value of equities (stock) and commodities worldwide. Even though I’m a two-time cancer survivor, my pre-ACA financial struggles were all Type 1 Diabetes (T1D) related. I was unable to get coverage after I graduated from high school at 18 and was working part-time in a grocery store, making $5.10 an hour. I went for 1-1/2 years after graduating without insurance to cover my T1D meds. When I was 22, I worked for a doctor who had her own practice, but she couldn’t afford to insure me (her only employee) because of my PEC, so I went another year without coverage. Long story, short: pre-existing condition clauses kept me from getting proper coverage then and kept one employer from being able to insure me at all.
Thankfully, insulin didn’t start skyrocketing until after I was able to get a job with group insurance, otherwise I would absolutely be dead. Back then, there was no WalMart insulin. If ACA is repealed, I’d be in big trouble because insulin is $600 or more per month these days and doesn’t include pumps or needles to inject (no pump means TWO types of insulin required and that would be more than $1,200/month). I have to get a carotid ultrasound soon – it’s necessary because of the radiation I’ve had on my neck. If the ACA is repealed, those type of procedures wouldn’t be covered because of my cancer history. -- Pam, PA I am NOT a patient person. So it shouldn't be that big of a surprise to anyone that knows me how frustrated I am that I've launched this site ON WEDNESDAY and I don't have one hundred stories yet.
Yes. Wednesday. Uh-huh. 100 stories. I shared my frustration with a friend on Thursday (because I was already frustrated by Thursday) and he reminded me of the two obstacles that I'm currently facing: 1) People with ESIs now are in a "don't mess with a good thing" state of mind and 2) Many didn't know if they had a good or bad policy before the ACA. I get it. I was part of that second group until my husband got sick. And then everything changed forever. Before there was the ACA, before there was GoFundMe, before there was even Twitter ... people with employer sponsored insurance suffered financially or physically when they found their policies weren't all that great when they really needed them to be. I know those stories are out there. I just have to fall into the right memory hole, I guess and bring them to the light of day again. I need you to click on this link and read the entire post, from beginning to end.
Need convincing? One short graph: "So she’d be a relatively healthy 9 year old. 20 year old. 30 year old. Uninsurable because she was born with cancer that has been in remission since she was a toddler and has liver damage that is stable and not really effecting her life. Uninsurable." That's what a lifetime cap will do to a sick child. No matter what they overcome, if they 'use up' their insurance, they're branded for life. If the ACA is repealed, we will all (even those of us with employer sponsored insurance) will go back to these dark, dark days. This Horror Story - our first! - was sourced via Twitter. I confirmed this occurred BEFORE ACA and obtained permission to publish. Thanks for trusting me with your story, Jilly.
Got cancer at 50. Malignant, metastatic breast cancer, 6 surgeries in 5 months. It took me nine years to pay off the doctor bills with BCBS. Yes. I was employed by an ophthalmologist for 35 years. This is the insurance that was provided and that I also paid for. $12,500 deductible. - Jilly I. I graduated college in 2005 after studying media literacy and media policy reform, not a huge field. I was fortunate to live in a city in which there were two organizations where I could apply for super-relevant and exciting jobs, but neither offered health insurance. I had been struggling for several years with cystic acne, treatment for which included a controversial drug called Accutane, that required monthly blood tests and lots of surveillance, as well as spironolactone between Accutane courses, and frequent steroid injections. You can imagine how pricey this gets.
I always expect people to be thinking 'it's just acne' but we're talking 15-20 massive purple cysts all over my face. And at the same time, I agree, it's just acne, it could be worse. But I still needed treatment to live a normal life. My face is quite scarred and even now I always know the cysts can come back, so if I want to be able to treat it and maintain a relatively normal ability to interact with people in public, I need health insurance. Even if I had been able to afford an individual health plan at the time, which would not have been possible on the salaries I was looking at, they wouldn't have covered the acne treatment. Because individual health plans could tell you yes, we'll give you coverage, but not for what you need it for, at least not for a year, and then we'll see. So my career plans were derailed by acne and the American health care system at the time. I was lucky, I was able to go into another field. Others have paid far higher prices. The lesson of my story is that if a condition as mundane as acne can threaten your ability to find a job and live your life, imagine how much worse it can be. -- Rachel LG  I'm the mother of 3, one of which was born with a congenital heart defect. Her name is Myka and she is 8 years old. After her birth, she remained in the NICU for 2 weeks and has had 2 open heart surgeries (one at 4 months old and one at eleven months old). Before the age of 1, she had hit ~$500k in medical costs. By the time Myka was 4, my husband was laid off from his job. He saw that as an opportunity to launch his own business. The ACA had been passed by then and we knew we would be able to attain health insurance in the form of a private plan as insurance companies would no longer be able to deny my daughter coverage. My husband's business has continued to grow and has been successful and he's more than happy to be working for himself. He now employs 4 people. Fast forward to election night, as it became apparent that Donald Trump would win, I was devastated. The only thing I could focus on was his promise to repeal the ACA and what that would mean to my family. Would my husband have to go back to corporate America just to have healthcare? Would he have to fold his business? Would my daughter lose her coverage in January? My daughter will most likely need a 3rd surgery. I know for a fact she'll come very close to hitting her lifetime cap at that point. We are not receiving any subsidies for our healthcare. I just simply want my daughter to be protected. -- Angela E.  This story is just so similar to ours and my hearts aches that the Potter family has to worry about insurance. Still. It shouldn't be this way. Please take the time to watch this video (and grab a kleenex).
https://vimeo.com/216510016 * credit to : @uninsurabledoc for this beautiful documentary.  The Takeaway:
"In 2011, when she was 25, she assumed she’d go uninsured for several months between graduate school and joining the Peace Corps. But her parents had heard that the fledgling ACA let them include her on their insurance policy through age 26, and they did. That May, three weeks after getting her master’s degree in French, a recent pain in her right knee was diagnosed as bone cancer. So she happened to be insured when, instead of going overseas, she spent the next year in and out of the hospital for nine rounds of chemotherapy and a total knee replacement." Full story: Trump spurs fears, hopes among Americans insured by the Affordable Care Act. So the Chicago Tribune article is what got me started on the ACA advocacy adventure. This Facebook post is what triggered the design/launch of this web site. I cuss. A lot.
Zeke Emanuel is on CNN saying that Trump’s Rx plan will have modest savings for folks on Medicare but will do nothing for people with private insurance — the majority of America. The majority of America has private insurance and benefits from ACA (Obamacare) provisions (no pre-ex exclusion, ban on lifetime limits & 26 year olds on parents policy). And that majority is unaware that their insurance is better because of those provisions ... because they’ve been lucky enough to not be really, really sick. Or they got really sick, but no one cut off their chemo mid-regimen because they maxed out their lifetime limit. These are working people who pay a fraction of the cost of insurance because their employer picks up the rest. The majority of America. Once again I ask: When will healthcare advocates messaging change rally THE MAJORITY OF AMERICA to join the fight to protect healthcare for all? I’m not really a mathy-type, but if the mother loving MAJORITY of America realized what they’re about to be cheated out of (isn’t that the real issue these days? A ton of white people who are afraid they’re getting cheated out of something by a brown person or someone who hasn’t worked as hard as they have?) wouldn’t it stand to reason that their involvement would put this unending fight to bed? No? Better idea to watch disabled advocates getting ripped out of wheelchairs or trolling mothers of chronically ill kids online to tell them how selfish they are for wasting the taxpayers money to keep their child alive? Is that the fight we have to have? Because honestly, guys, I don’t think any asshole who tells a woman to kill her own child is going to ... at some point ... develop compassion and support the effort. But maybe .... just maybe, if we told the fucking majority of America that an orange guy is about to yank out all the provisions that keep their hard-working asses covered — medically and financially — maybe, perhaps, they’d do something to ... save themselves? Or not. I don’t know, but I’m so fucking tired of the myopic focus. So fucking tired. |
RSS Feed
Proudly powered by Weebly