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One of my two daughters was born with a complex, highly variable genetic disorder capable of affecting virtually every organ system and associated with a high risk of cancer. Now approaching 40, she was diagnosed in infancy but fortunately escaped the dreaded childhood manifestations: severe cognitive impairment, skeletal deformities, malignant tumors of the eye and central nervous system. She was the dearest, sweetest little girl, bright as a button. Problems, including depression, issues with planning/organizing/multi-tasking, and mild cosmetic disfigurement, began with the onset of puberty. She required her first surgery, to remove a large tumor in her thigh that made it painful to sit, as a junior in college. Long story short, she would have gone blind in both eyes at 26 and died a quadriplegic at 28 and again at 32 without expert surgical intervention. Along the way she sensibly decided she would never have children.

Two years ago during Breast Cancer Awareness Month, after getting the run-around from an inexperienced doctor who didn't think the tender lump in her breast could be malignant, my daughter began the triple whammy of mastectomy, chemotherapy, and radiation for early breast cancer, boosting her odds of surviving five years to about 95%. Recently she has developed osteoporosis. (Her underlying disease predisposes her to both early-onset breast cancer and early-onset osteoporosis, which isn't common knowledge in the medical profession.) The University-affiliated physicians currently treating her or supervising her care include specialists in family medicine, medical oncology, radiation oncology, surgical oncology, plastic surgery, neurosurgery, and medical genetics.

So here's where the ACA comes in (or doesn't). My daughter is a college graduate, but her employment history doesn't reflect this, and needless to say, there are gaps in it. At the urging of her highly talented sister she quit her first Big Box retail job to find something better through temp work, which didn't pan out. Then, just as her out-of-state individual health insurance plan expired (which she could have renewed once, for six months, but hadn't gotten around to), she lost a full-time job she was about to be hired for, due to emergency eye surgery followed by a week of facing the floor without raising her head (her face was so swollen, we had to ice her lips so she could drink through a straw). It was around this time that her father and I, having advised against quitting her Big Box job with its health benefits until she found another position, and having covered the out-of-pocket for her eye surgery, helped her find an in-state individual health plan. (Of course anything to do with her eyes was excluded for three years as a pre-existing condition, but the unsuspected spinal tumor at the top of her neck was covered.) She had exhausted all her reserves during her prolonged job search, so we offered to pay the premiums. To her credit she hates being dependent, and it's terrible for her self-esteem, but we insisted on grounds that in a sane society, health insurance premiums wouldn't be an issue.

My daughter has been on this individual plan ever since, partly because if she lets it go, she'll never get it back. (In our state they can't dump her or charge her a higher rate for getting sick, but they can reject her application.) When her breast cancer was discovered, she had been working in a Big Box warehouse for six years continuously, declining their inferior, high-out-of-pocket-if-you-get-sick health plan, with no compensation. Said Big Box went into bankruptcy around the time she was diagnosed, but fortunately she was still eligible for long-term disability from them, after Social Security turned her down; however once said Big Box was sold to the highest bidder, its purchaser promptly fired all employees who were out on long-term disability. When she was able to return to work, it took months to find another job.

This is a better job (heating! air conditioning! no repetitive arm-raising! possible to sit! okay to wear pockets!) albeit not better-paying, at a new company that seems to care about its employees. Already they've promoted her. But again with our blessing she has rejected their medical coverage (she accepts vision and dental) because although it's fairly generous, it would require her to switch to an entirely different, less excellent system and change every single doctor. And then what if her new employer goes out of business, or she loses her job for some reason? She won't be able to reactivate her individual plan.

Under the ACA, my daughter would have to go without coverage for six months before she could qualify for a high risk exchange, with probably fewer benefits and a higher out-of-pocket than her current plan. Again, she gets nothing -- zero -- in return for saving her employer the cost of coverage. And just this month, her individual monthly premiums went up from $385 to $427. Without family assistance, she would be forced to accept her employer's plan, given her meager income.

The ACA offers premium subsidies for low-income people, but only if their employer doesn't offer ACA-approved coverage. So assuming the ACA goes into effect as scheduled, her only relief is to accept her employer's plan and change all her doctors, her cancer care center, her hospital etc.

Health coverage should have nothing to do with where a person works. We need single payer!

Originally posted to pianogramma on Wed Oct 03, 2012 at 09:15 AM PDT.

Also republished by Single Payer California and Community Spotlight.

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Comment Preferences

  •  Everyday heroism (32+ / 0-)

    Your daughter's trials are heartbreaking. I wonder at what point she's eligible for long term disability through Social Security?

    Right, the ACA has done nothing for Individual policy holders. Unless and until they run out of money and wait 6 months the national pools are not an option.  Due to the normal age rate increases still allowed I now pay $1000/month and I'm healthy and rarely use services.

    The country needs single payer.

    I pray your daughter find her needs met and the peace of knowing her medical care will be forthcoming no matter what. I wish you luck.

    Let all Bush tax cuts expire and , bring on the Sequestration cuts to defense.

    by kck on Wed Oct 03, 2012 at 10:07:25 AM PDT

      •  The could have filed a complaint (1+ / 0-)
        Recommended by:

        about being fired while on disability under the  ADA, Americans with Disabilities Act.

        If under ACA her employers insurance is still not covering her doctors she should look into getting her doctors on that insurance. It may be just filing a simple forms. She could also talk with the insurer about making an exception for her treatment for continuity and because they are specialists.

         There are ways around these problems.

        The cost of the ACA temporary plans depends on the states. People in those states that chose not to set one up get to use the Federal plan which is very reasonable in cost. Are you in a state with a half assed R governor? Then you may have really good deal a waiting.

        I'm asking you to believe. Not in my ability to bring about real change in Washington ... *I'm asking you to believe in yours.* Barack Obama

        by samddobermann on Thu Oct 04, 2012 at 04:21:59 AM PDT

        [ Parent ]

    •  Congress should make some "sacrifices" (11+ / 0-)

      and pay for their own private insurance. No group policies. I'd like to see the Indiana delegation's faces when they learn, "No Health Insurance company is obligated to pay out more than what has been paid in". So when they get those $2,000 a month premiums with $5,000 deductibles for each member of their family, they better not get sick for a number of years.

      Private Insurance is basically an expensive wholesale card. It allows you to buy services at the reimbursement rate instead of the retail rate. If you have managed to keep up with the 25% annual increases and get something that is not too serious, they may consider paying something out.

      Interestingly enough, group insurance members have none of these problems. They have protection. Unfortunately, we are rapidly turning into a temp society with no benefits. That means there has been a tectonic shift towards shitty private policies or no policy at all.

      Imagine how shocked I was when a Bought Veterinary Health Insurance for my dog for $30 a month. I had the policy for three years before he came down with terminal cancer. I paid extra for a Cancer Ryder and it still only cost me $30 a month with no price increases. When my dog died and I had the miserable job filling in the forms to get reimbursed, the agents there were both helpful and courteous. I had one hell of a bill from a few months of Chemo and treatment for the side effects. The insurance company paid about 60% of a mid 4 figure bill.

      Lets think about that a second. Dogs take essentially the same meds we do. Vets that treat them call in specialists when they get a seriously ill dog. The insurance coverage , while not like Congressional Insurance, was pretty good considering it didn't bankrupt me to pay for my dog.

      The main reason they can afford to cover a dog and be nice about at the same time and pay out more than we pay in, is simple really; the providers don't charge a gazillion dollars for their services. The same drug companies that sell Cancer drugs for us at 100G a year per drug,  discount the hell out the same drugs ( under a different name) for dogs  because no one would ever buy them.

      In order to move to a single payer we have to consider insurance companies a hurtful wart on the swollen ass of a Pig who eats everything in sight. We have to treat Insurance companies as a symptom. They don't cause the problems , they just make money off them like everyone else who builds profit margins higher and higher until it becomes unaffordable for all except the 1% and those who belong to huge groups.

      Otherwise, single payer is a sure road to bankruptcy and will never get a hearing. That's why the ACA is the best it's going to be and no matter what happens , people with Private insurance will get screwed. No price caps make that a certainty.

    •  Well, not 'nothing' (8+ / 0-)
      Right, the ACA has done nothing for Individual policy holders.
      Wait, wait, I'm right there with you on the single payer thing, but let's not exaggerate.

      The ACA has already eliminated yearly caps and lifetime caps, and has eliminated discrimination based on preexisting conditions for children. That's hardly nothing, and has saved actual people's actual lives.

      Yes, it's not enough. But it's not just peanuts, either.

  •  ACA was better than nothing but ... (22+ / 0-)

    I agree that what we really need is a national healthcare system, not a system that relies in any way on insurance companies.

    For a number of years I lived in Massachusetts and was subject to the law mandating everyone to carry health insurance coverage. As a freelancer, this was often difficult to do. I was lucky; since I took a full-time job for a while I was able to keep the coverage I had there under COBRA. It was very expensive but I had decent coverage. I say decent because while it was one of the best providers available, over time my policy covered less and less. My employer (a small business with around 10 employees), in an effort to be able to continue to provide any health insurance to its employees at all, had to downgrade plan coverage a number of times. As a result, my copays went up drastically and medications that had been covered no longer were. I was paying so much out of pocket that I wondered if keeping the expensive insurance I had was really worth it.

    I looked into the state-provided healthcare option (which a friend - also a freelancer - was using) and found that it wasn't really an option at all. My doctor advised against it, saying that most doctors and hospitals did not accept it. So, despite being surrounded by some of the best hospitals in the world, had I signed up for that plan I would not have had access to any of the care they provide. I have no idea where I would have been expected to go, but I didn't want to find out.

    Now that I live in Washington state, I'm not sure what my options for health insurance are. Frankly, I've been too afraid to look. Most friends here who don't have plans through full-time employers simply don't have any coverage. I can only assume that, as in Massachusetts, individual plans are insanely expensive. Some time soon, I'm going to have to choose something though.

    Fortunately, I have always been in very good health and my use of health care has been almost exclusively preventative. As I get older, I realize that this is more important than ever. I want to preserve my health for as long as I can. The thought of what could happen were I to get really ill is frightening to say the least.

    ACA does a lot to force insurance companies to provide the kind of preventative care I need, but for patients across the healthcare spectrum, your daughter and I alike, any option that involves health insurance companies will never be truly in our favor. As much as I would like to believe it's possible, I actually doubt that the US will ever see the kind of national health care that is available in Europe and elsewhere (for some interesting historical perspective on how national healthcare became to be demonized by many, this New Yorker article is amazing). One thing I am absolutely sure of is that if the Republicans are allowed to have their way things will only get a lot worse.

    Stop it. This is hard.

    by angelama on Wed Oct 03, 2012 at 10:28:55 AM PDT

    •  The New Yorker is great for articles on the health (4+ / 0-)

      care situation. I've been following the magazine since the introduction of health care to the debates in 2008.
      Dr. Atul Gawande has a series of articles starting in June 2009. I learned more from him than I did from any congressman or news person debating health care.

      •  Gawande is terrific. Such a great writer! (1+ / 0-)
        Recommended by:

        Also the New York times has been running fantastic articles on many aspects of health care by many knowledgeable people.

        Also good is Berwick who served for a while as CMS head — though the Senate would never confirm him.There are many people who are seriously working on improving quality —which in itself reduces costs of care.

        I'm asking you to believe. Not in my ability to bring about real change in Washington ... *I'm asking you to believe in yours.* Barack Obama

        by samddobermann on Thu Oct 04, 2012 at 03:09:25 AM PDT

        [ Parent ]

        •  I still remember his visit (0+ / 0-)

          to the Northwest Kidney Center, the world's first and oldest dialysis clinic group. I was still in training for doing home hemodialysis, and by the time he got up to the home program's floor, I was already on the machine. He came in to watch me operate the machine by mysrlf, and I gave him a bit of a rundown on what I'd learned to do, how I interacted with the machine, how much better I felt on 5-days-a-week longer dialysis than I did going into clinic three days a week and dialyzing there, and other such things from a perspective I hope he never has: that of the patient. I understand he left extremely impressed with home dialysis, which has been very much to the good of the dialyzors that are affected by CMS' actions.

          Organ donors save lives! A donor's kidney gave me my life back on 02/18/11; he lives on in me. Please talk with your family about your wish to donate.

          Why are war casualty counts "American troops" and "others" but never "human beings"?

          by Kitsap River on Thu Oct 04, 2012 at 03:00:32 PM PDT

          [ Parent ]

  •  ? (9+ / 0-)

    Under ACA, your daughter is guaranteed coverage on any plan on the market at the same premium as anybody else.

    Until ACA becomes fully effective in 2014, the situation you describe - high-risk pools - persists, but it exists in the ACA as an interim stop-gap measure to get us to 2014,  replacing in many cases ... nothing.

    Good luck to your daughter!

    Am I right, or am I right? - The Singing Detective

    by Clem Yeobright on Wed Oct 03, 2012 at 10:41:04 AM PDT

  •  Healthcare System in US insane (14+ / 0-)

    Reading the web so many stories like this on the net but a total non issue in many other countries.

    Why is taking millions of tax dollars to defend against a war that may never happen or to fight a war that never needed to be fought OK, but taking tax dollars to defend every citizen against death by bad health a no no?

  •  Take it day by day. (3+ / 0-)

    Hold your family close and keep pushing for universal health care.

    "Growing up is for those who don't have the guts not to. Grow wise, grow loving, grow compassionate, but why grow up?" - Fiddlegirl

    by progressivist on Wed Oct 03, 2012 at 03:03:10 PM PDT

  •  Republished in Single Payer California (6+ / 0-)

    The ACA is a step in the right direction and it helps many.

    But only with Single Payer will tragedies like this be prevented.

    Daily Kos an oasis of truth. Truth that leads to action.

    by Shockwave on Wed Oct 03, 2012 at 03:05:57 PM PDT

  •  Hopefully the ACA will be a starting (3+ / 0-)
    Recommended by:
    james321, ladybug53, pianogramma

    point to move toward better health care system and not an ending point. For that to happen, people like this diarist need to take these compelling stories again and again to their Senators and House members and even to their state legislators as individual states will have the opportunity to improve upon the basic framework of ACA.

  •  Can employer cover her plan? (2+ / 0-)
    Recommended by:
    DamselleFly, ladybug53

    Since the employer pays a certain amount for the coverage they offer, can you ask them to just chip in that amount to her individual insurance?
    My employer has offered to do that before. It would help cover the cost of her insurance.

  •  I am indifferent to single payer (2+ / 0-)
    Recommended by:
    ladybug53, lonespark

    I personally think making delivering healthcare more efficient to be a bigger priority. I think single payer should cover preventive care for minors and elders and catastrophic care for everyone . I tink there is room for private coverage in the middle tiers.

    If someone can solve the reason why healthcare is so expensive, then we will need insurance -whether it is private or government provided - for only major issues. I shouldnt have to shell out a small fortune and need insurance for average medical problems.

    Single payer is an improvement over what we have. But I think a hybrid approach would be better than even single payer. I will settle for either as long it is not the current system.

    •  Yeah, I'm open to seeing how ACA works. (1+ / 0-)
      Recommended by:

      Although I have a personal preference for single-payer, many other countries get by just fine on hybrid systems.

      Having said that, although I know why we needed to wait until 2014 for implementation (allow for HHS implementation, let states implement the parts they implement, re-tool Medicait, hire and train people, not blow up insurance companies in the middle of a plan year, etc. etc. etc.), I've long felt that needing to wait that long for full implementation would potentially be an anchor on Obama's re-election campaign.  Until Jan. 1, 2014, candidates from Romney to Stark County Treasurer get to describe horrible insurance situations that the ACA will cure but blame them on ACA because in the media, ACA was passed awhile ago.

      Having said that, I don't think there was an alternative.  Fuck, our private insurance system is so vast that phasing that into single payer could've taken a very long time, so as to not shock the job market with all of the soon-to-be unemployed insurance company employees.  And not just the CEOs but all of the secretaries, and clerks, and accountants, number crunchers, insurance agents, all sorts of completely not-evil work-a-day people who we would need to have an organized system to retrain.  Very, very difficult to implement without hurting the economy (although once it's up it would of course be good).  So, we live with the transition time.

      "The first drawback of anger is that it destroys your inner peace; the second is that it distorts your view of reality. If you come to understand that anger is really unhelpful, you can begin to distance yourself from anger." - The Dalai Lama

      by auron renouille on Wed Oct 03, 2012 at 08:28:15 PM PDT

      [ Parent ]

    •  One of the things the ACA is (2+ / 0-)
      Recommended by:
      pianogramma, lonespark

      doing is reforming the delivery of care which will bring down costs while it improves care. The reasons it is so expensive is that it is inefficient, fragmented, using unproved treatments, concentrated on the wrong things and the greed of providers (of all types  — but NOT all individuals) and the demands of patients for what they think they "deserve."

      Health care insurance is different from other insurances. It is a combination of insurance for high cost needs, an assumption of risk which is needed, AND a savings/prepayment program for the lesser. The reason for bundling them is that the more you can prevent or catch early the lower the cost of high risk/high cost interventions. And if the prevention (primary or secondary) is free, in actuality prepaid, then people are much more likely to use them. This reduces high risk care — so the insurer has an interest in your getting the low risk prevention and early care.

      That's why flu shots are very low cost or even free.

      Another reason is that a few trained entities can bargain better with doctors, therapists, hospitals, labs than most individuals can, especially when the are ill.

      Then too, where do you draw your lines? Is a pregnancy and delivery a normal cost? What is you develop some condition at the very end of pregnancy or the newborn does? Should insurance take over if a person has done nothing as prenatal care?

      A lot of people are very low income, working people that is

      I'm asking you to believe. Not in my ability to bring about real change in Washington ... *I'm asking you to believe in yours.* Barack Obama

      by samddobermann on Thu Oct 04, 2012 at 03:56:50 AM PDT

      [ Parent ]

  •  It's none of my business, and I'm so sorry that (2+ / 0-)
    Recommended by:
    pianogramma, lonespark

    your daughter has to go through this hell, but is it possible that come 2014 she would be within the Medicaid bracket?  It's my understanding that a good many people will find themselves within that bracket - in the states that accept Medicaid (and odds are most will, if not all but Arizona), Medicaid is going to become a really wide-reaching program and will be available to many lower-income employees (and yes, many college grads are lower-income in today's world).  I've spent a long time looking at these issues because I have numerous disabilities, although my situation does not at all resemble your daughter's - although I have a huge prescription budget, I go month-to-month without crises, although a major medical event for me is all but certain every five years or so.

    Still, while I'm a huge supporter of the ACA for getting us a long way to where we need to be, we're not all the way there yet, and I'm so sorry that you and your family have to be some of the people bearing that burden :(.

    "The first drawback of anger is that it destroys your inner peace; the second is that it distorts your view of reality. If you come to understand that anger is really unhelpful, you can begin to distance yourself from anger." - The Dalai Lama

    by auron renouille on Wed Oct 03, 2012 at 08:17:23 PM PDT

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