Through a bad roll of the genetic dice, I am the unhappy host for several, rare chronic diseases.  Any one of these would render me uninsurable, but the combination of them makes me incurable, and very difficult to treat.  The deadliest thing that I can encounter is a well-intentioned but uninformed doctor.

I have currently have excellent insurance through my husband’s job that allows me to see my varied team of treating physicians.  Two are in other states, and the rest are all heads of their departments, but none share a hospital or healthcare group. If my husband were to lose his job, I would be placed into the “high-risk-pool,” if there were any slots left, or forced onto the exchanges where my physician options would be cut significantly.

I would likely be forced to pay for healthcare coverage that I cannot use, since many doctors have been unwilling to even attempt to treat me, despite my “Cadillac” insurance plan.

I would likely have to pay cash to see my current team of physicians, which would be a tremendous financial burden on my family and likely end in bankruptcy.

I was cautiously optimistic when I heard of the end of the pre-existing condition exclusions for health insurance, but the current law will not help me at all.  It does not expand my insurance options, it will definitely NOT be less expensive than what I have now, and if I am forced to see a well intentioned, overworked and uninformed (or even distracted) doctor, it just might kill me.

BTW: I am NOT disabled, and do not take any form of government assistance.  I have owned my own business and paid that higher tax bracket for over 20 years.”

If you’ve had a bad or good experience attempting to buy health insurance on the state or federal exchanges, we’d like to know about it. Drop us a note.

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51 Responses for “The ACA May Kill Me”

  1. DShea says:

    This entire analysis is based on what would happen if you lost your current coverage.

    Would your options be BETTER before ACA, if you lost your current coverage?

    It’s not the ACA that may kill you. It’s the options available if you lose your current coverage. And, under ACA you have a HIGHER likelihood of preserving at least some of those options.

    • G-Mom says:

      Since our plan is renewed annually, it is more of a when I lose my current coverage than an if. No, my options would NOT be better, that is why I was cautiously optimistic, but having to pay premiums for a healthplan that I cannot use because the few doctors that I would be allowed to see don’t know how to treat me, is not a solution either.

      • Al says:

        Sorry for all your problems. The one shoe fits all approach generally leaves out those with a different type of foot. That is what we get with too much government intervention, something prevalent pre ACA (in great part due to government regulation) and something that gets worse with the ACA.

        You need control over the cash being spent so you can tailor the care to your needs. You don’t need some bureaucrat in Washington telling you that you are better off because he knows more than your doctor.

        Health insurance should be a method to pay for the rare and expensive problem and not be abused by using it as prepaid health care which leaves out those that need insurance the most.

        • Jonathan says:

          Al, what are you talking about? There is no bureaucrat dictating network size. Each health plan is making decisions on network size in anticipation of the market and what will be competitive in each coverage category. An insurer can have a Silver plan with a huge network, and in some cases I’m sure they do, but in general they looked at what kinds of plans were successful in Massachusetts and saw that smaller network plans were more popular because they were cheaper. People voted with dollars, plans are adapting. How would you avoid this effect? By providing no help to purchase health insurance? It makes no sense.

          What’s amazing is that the ACA will survive and become part of our landscape, and the vast majority of people will feel no effects or be better off, and the doomsayers will pretend that they never went crazy over it. Remember Ronald Reagan in the 60s saying Medicare if enacted would doom us to Socialism and serfdom?

          • mFair says:

            Larger networks are available, but for a much higher price- 17-30% increase in premium. these plans won’t survive because people on the exchanges are shopping price. plans are available for purchase in a side by side comparison. The ACA max out of pocket applies only to IN NETWORK CARE. People that find themselves OUT OF NETWORK could be on the hook for 100% of the charges. Nothing in the ACA regulates or caps out of network charges. NARROW NETWORKS could be a huge deal. Consider cancer, does your doctor send you to an out of network oncologist that he has confidence in- knowing that his decision could bankrupt you?

    • Mr James says:

      Irrelevant question. She is describing specific circumstances she is in now that are individual to her. Posing a hypothetical “what if” question merely evades that there is no good answer for here under ACA.

      She is one of the people who appears to be harmed. Either this was an unintended consequence of the ACA that was not anticipated or it was anticipated — and she is one of the eggs that must be broken to make the health care reform omelet.

      • Peter Squitieri says:

        She may not be able to get adequate coverage under ACA if her husband’s policy is cancelled, but she would not be able to get any coverage at all before the ACA.

        Any consequence of the ACA would be either neutral or beneficial compared to what existed before. How can you say the ACA harmed her?

  2. MLewis says:

    Condolences for your struggles. But please do not underestimate what the no preexisting conditions clause of the ACA does for many others who have chronic illness. Such as a young person with Crohns and only temp jobs? A middle-aged person who is too ill to work fulltime with no spouse to piggyback off? That provision alone will make me continue to support the ACA to all naysayers.

    It may not be the Cadillac you want, but it keeps many people moving forward with their lives.

  3. DB says:

    I know what you’re going through, I have similar issues that I talk about on my blog at http://bdpinsurance.blogspot.com/

  4. t says:

    Yes, the narrow networks of the Exchange plans are going to be a huge, but now greatly underestimated problem for people. If you are forced onto an Exchange plan because your husband loses his job, you’re in trouble if you want to see the doctors you need..

    It’s true, some people have pre-existing conditions and can’t get insurance. But was the solution really to make insurance worse for the rest of us? I don’t think so.

  5. Matthew Holt says:

    A false strawman. Currently IF your husband lost his job (and Cobra expired or his company plan ended) you would be uninsured period, or at best in a long line for a high risk pool. Under ACA starting Jan 1, 2014, you can buy insurance that’s probably not only cheaper than that available to even healthy people now AND also probably covers better providers, as most health services research shows that cheaper care is usually better care (whatever high cost providers say). And your husbands insurance is not affected, so literally you have nothing to complain about.

    But someone with your condition without a husband—even someone like you who is rich and owns their own small business–would likely suffer gravely under the current system. Yet you are defending it. Totally illogical.

    • MD as HELL says:

      Covers what, Matthew?

      I have yet to here of anyone taking the new plans. ERs will as it is better than nothing. No one else will, so the ER will have lines out the door circling the block.

      The cash price of seeing a doctor will be going up. Little chance of any federal program being taken by desirable docs.

      Too bad. This is all totally unnecessary. All for the illusion of covering unneeded care for everyone.

      More money chasing care will only raise the price. People used to be afle to afford care. Now it is beyond affordable for everyone.

    • G-Mom says:

      No, the providers are not better. I’ve seen and been refused by several of them in the past. The care may be “cheaper,” but I won’t be able to use it AND I’ll have to pay more to see the current docs I have.

      You need a total reality check, just because I own my own business does NOT mean that I am rich! Hardly! I work hard and love what I do. I maintain what productivity I can through my illnesses by setting and working my own hours. Would you rather have me work for myself and scrape by or just go on SS disability because I can’t work a regular job?

      • Matthew Holt says:

        i obviously dont know your individual situation, but you dont seem to acknowledge that if you lost your husband’s insurance you would be uninsurable pre the ACA. How is a limited network coverage via the ACA possibly worse? And most current plans also have some limits to networks.

        Of course single payer like Medicare or the French system, doesn’t. Is that your preferred solution?

        • t says:

          This is a falsity. If her husband lost his insurance, she would be protected under the portability part of HIPAA.

          • Matthew Holt says:

            Only f there is another group that will take them OR an individual insurer of last resort (usually the high risk group I mentioned) AND HIPAA makes no mention about pricing. HIPAA’s impact on the health insurance system was like baling out the Titanic with a kids bucket

          • Nancy Metcalf says:

            Matthew is right. The HIPAA portability law was well-intentioned but meaningless because the guaranteed-issue plans made available under this law had sky-high premiums out of the reach of regular people. Why? Because the only people enrolling in them them were those with pre-existing conditions who couldn’t purchase regular individual market plans. Their medical expenses were high, hence premiums also high.

  6. Nancy Metcalf says:

    Is this a joke? If your conditions are as severe as you say, pre-ACA if your husband lost his job the last thing you would have to worry about would be a provider network. Because you wouldn’t have insurance at all.

  7. theresa defino says:

    Why was this allowed to be posted? Anonymous and full of errors?

    • Al says:

      Wouldn’t you be embarrassed if it turned out this person was as real as you? Many people have her pain whether anonymous or not.

      • G-Mom says:

        Al- All of us are quite real, and we are watching and have been waiting for a solution that addresses our needs. We are the problems that cannot be prevented, the 1/3 misdiagnosed or improperly treated before Mayo. The patients that flooded Dr. Lamberts blog after his “Letter to Patients with Chronic Illnesses” went viral on our support forums. Believe me, I know I’m screwed with either system, but at least with yearly planning and budgeting of my health expenses I had options with the old system.

        • Peter1 says:

          This story, about someone who has excellent employer coverage through her husband’s work, and will be hurt by the narrow insurance networks offered because of ACA if she looses that coverage, does show a weakness in the ACA for her particular condition. Maybe she could get Republicans to strengthen the ACA rather than trying to kill it.

          These stories of inability to get or afford coverage for pre-exist we’re not about isolated circumstances like G-Mom’s prior to ACA, they were rampant. Many of those people did not have the option of excellent employer coverage.

          The ACA does not mandate narrow networks, insurance companies dictate them, just like insurance companies dictated coverage for pre-exist.

          • t says:

            The ACA is generally not a very well thought out law.

          • Mr James says:

            “Maybe she could get Republicans to strengthen the ACA rather than trying to kill it.”

            Why? The phrase “polishing a turd” comes to mind here. If the law itself cannot work (and it can’t) then what is the point in trying to “strengthen” something that is fatally flawed?

            If the GOP believed from the start that this thing was dead on arrival, then why are they obligated to try to expend time, energy, and political capital (their bases hates the ACA) to try to fix something they oppose and genuinely believe is harmful?

            That makes no sense.

    • Bobby Gladd says:

      Comes under the heading of “Concern Troll”?

  8. theresa defino says:

    A blog that runs credible pieces by well-known policy-makers and thinkers has an obligation to moderate content. I thought this blog had standards. My mistake.

  9. Joel Hassman, MD says:

    You know what is so disingenuous, dishonest, and after listening to the likes of Juan Williams and the other brutal apologists of PPACA, they are almost saying word for word the following dismissive attitude of:

    “well, people gotta live, and people gotta, die, and frankly, why should the middle class have options that the poor don’t until now. This alleged 5% of the population losing their insurance coverage, that is random chance. Oh, and it’s the insurers’ faults anyway. We, the politicians, know better what you need, so just shut up and accept the law!”

    Well, as I said before, I look forward to all those Democrat stalwarts and unapologetic defenders getting harmed with the rest of us. And you will be in the back of the line being attended to when the public fights this insult.

    Because, hey, you voted for this guy, so you have no right to complain. See George Carlin’s 1996 “Back in Town” show at the end, he’ll explain it in full to you so you can just sit down and suck it up!

    Wonderful to witness Neville Chamberlain’s resurrection in the millions. I’ll leave it to you to figure out the reference!

  10. G-Mom says:

    For those who believe that I am being melodramatic, or uninformed, I would point you to yesterday’s Wall Street Journal article by Edie Littlefield Sundby: “You also can’t keep your doctor,” or perhaps any of the open letters to HHS from GlobalGenes.org, American Plasma Users Coalition, Rare Disease Legislative Advocates, or recent legislative requests from the National Organization for Rare Disorders.
    This is not a rare occurrence or a small oversight that will affect only a very few people. It will affect 1 in 10 (NORD statistic) Americans suffering from rare diseases. We are the people to whom this law was supposed to provide hope, choice and healthcare. There is a very large glitch in this system.

    • spike says:

      You just havent’ made a case for why it’s worse for you now than it was pre-ACA. If your husband lost his job 2 years ago, you’d have been completely 100% screwed. Now it’s still not perfect but it’s a whole lot better. Yet you want to blame ACA.

      Please just explain what you would have done if ACA weren’t in effect and your husband lost his job that would have you so much better off and people who back off, I’m sure.

  11. Mr James says:

    This whole thing was sold on lies. One of them was the promise that people could keep their doctors.

    • Jonathan says:

      Are your doctors changing, James, due to the ACA? The vast majority of people will not have network changes attributable to the ACA. I would like to see a real analysis of how many people who had coverage have to take a new plan due to the ACA and can’t see their old doctor as a result. Is it 1% of the population who would need to switch docs or go out of network?

      keep in mind that regardless of the ACA this happens to millions of people a year because they change jobs, or their employer gets a new insurer, or they lose their jobs, etc. And keep in mind that millions of hard working people without insurance can now get it for far less than they could before.

      • Mr James says:

        The question is moot. This is not about my experience with the ACO, but about the person who wrote the column.

        The point is that people were promised in unequivocal terms that (a) the new plans would be cheaper (average of $2,500 a family), that people with existing plans could keep them (period), and that people could keep their existing doctors (again, without qualifiers).

        Those were the terms under which this was sold to the American public. It was all lies. Every last bit of it. What we see now is bait-and-switch on a level that would land a private sector company in legal hot water for fraud.

        So, we now learn that it is OK to lie purposefully and repeatedly. Hey, it is what all the cool kids are doing!

  12. MS says:

    Well, I guess this argument has been settled in G-Mom’s favor now that the President has apologized to all who relied upon his false assurances.

  13. Bob Hertz says:

    A certain amount of “insurance 101″ is needed right now.

    a. The ACA decided to keep private insurers in the picture. (I wanted to expand Medicare, but that would be “on-budget” and would have forced providers to accept lower fees.)

    b. The ACA then took away the practice of underwriting from insurers, which is how most of them actually made money. If they underwrote carefully, they would have 2-5 years of profit until the “aging curve” of medical claims caught up with them. A 50 year old who is healthy today may well develop a chronic illness in 5 years

    c. Without underwriting, insurers are determined to find some way to discourage high cost patients from enrolling with them.

    A narrow network is one way to accomplish.

    Remember this (and you probably have not heard it elsewhere)…………..

    A person who even HAS a favorite doctor is a bad risk. The person has a favorite doctor because they already have an illness!!!

    Narrow networks are designed to discourage bad risks from enrolling

  14. Bob Hertz says:

    Just a sidelight……..

    Matthew is totally correct that HIPAA was useless for continuous coverage.

    I found that out first hand. I was on a Blue Cross corporate plan until 2007. I left the firm and picked up COBRA for 18 months.

    During that time I had a heart attack.

    When COBRA ended, I cheerfully went to Blue Cross and asked for a policy. I had had continuous coverage for 21 years.

    And I was told that Minnesota Blue Cross had no policy for post-COBRA enrollees. Too bad, so sad.

    And this was in a liberal state!

  15. John Ballard says:

    Where are the complaints from VA beneficiaries?
    How about those covered by the Armed Services?
    The Medicare crowd seems mostly satisfied. (My MA plan looks better all the time.)
    I’m not finding complaints from parents of kids covered by SCHIP.
    And those qualifying for Medicaid are eternally grateful for anything they get.

    From where I stand, all these government plans appear to be doing pretty good overall. Seems to me most of the problems are with the famous private sector. ACA has fair and easy to understand principles that have been in place for years with these government programs (no exclusions, no caps, no denials, etc.)

    Those who blocked the public option are responsible. A single-payer model is looking better all the time.

    What am I missing?

    • Aurthur says:

      Current Medicare crowd should be as happy as anyone that gets in on the ground floor of a Ponzi scheme. I’d be happy too if I could manage to pay only 1/3 of the cost of my care. As for the other 2/3 of the cost, that will be handled by the suckers that pay income tax, private insurance plans that are cost shifted to (for as long as obama allows them to exist) and especially those young whipper-snappers that will be paying more than the full cost of future benefits for the rest of their lives (or at least as soon and as long as they have a job). Medicare for all. Ponzi scheme for all. Free stuff for everybody.

      http://www.aei-ideas.org/2009/08/have-seniors-really-paid-for-their-medicare-benefits/

      http://www.usdebtclock.org/#

      • Aurthur says:

        What’s 100 trillion dollars of unfunded “promises” among friends?

      • John Ballard says:

        I realize that the notion of a social contract is alien to many, but both Social Security and Medicare are, in fact, social contracts — not investment plans. The arrangement for both is straightforward: a working population contributes payroll taxes (not income taxes) to fund both Social Security and Medicare Part A. for the non-working population who are the beneficiaries. Some working people will never live long enough to join that non-working population in the same way that some insured people will never “get back” anything for the premiums they pay — the penalty for outliving term insurance or not getting sick or injured. I can’t speak for everyone, but insurance premiums are money I hope never to see again. Who wants to be in a car wreck, have surgery or die before term insurance runs out, just to claim they “got their money’s worth”? It’s a nutty idea when you think about it.

        The same principles apply to social contracts. But the unhappy fact is that becoming old and sick is the price most people pay for not dying. And it’s not realistic for most people to set aside as much as it takes to maintain frail bodies and often demented minds in long-term care for years until they angel of death finally comes to carry them away. Call it a Ponzi scheme if you want, but my understanding of a Ponzi scheme is it is a way to maximize assets, not deplete them. And both Social Security and Medicare deplete assets. In both instances the beneficiaries die. If they have personal assets that are inherited, that is part of the estates they have accumulated. But both Social Security and Medicare vanish when that person dies.

        Those of us in the post-war baby boom were taxed enough during our working lives to accumulate enough in the SS Trust Fund to last well into the future. Unfortunately the “tax holiday” made necessary by the financial catastrophe of 2008 (and subsequent political grandstanding) depleted that fund in a significant way, but fortunately it remains solvent for at least another decade or two.

        (I don’t know why I bother to explain this… it’s like pissing in the ocean trying to overcome the ignorance.)

        • Aurthur says:

          Mr. Ballard. Please enjoy your retirement. Thank you for your stories. I enjoy reading them, not because they are untrue, demented, fictionalized fairy tales, but because they are informative to me in mapping out how a significant portion of this country’s population processes what they see, hear, and read and end up so from reality, the facts, and the truth. If this is a coping mechanism that allows or contributes to your happiness, fine by me. Who am I to interfere? Enjoy your bliss.

          • Aurthur says:

            @ Mr. Ballard,

            “I don’t pretend to be any expert.”

            “(I don’t know why I bother to explain this… it’s like pissing in the ocean trying to overcome the ignorance.)”

            Please stop pretending to be an expert. Give it a rest. If you were to testify, it certainly would not be as an expert witness, the judge would have to grant summary judgment against you, and your case would never reach a jury.

  16. Bob Hertz says:

    One of the reasons John Ballard is right is this:

    Medicare, Medicaid, the VA and Tricor rely on broad based taxpayer funding.

    The more money you make, the more you eventually pay for these programs even if you do not use them.

    The ACA relies on individual insurance premiums. Because these are so regressive, the subsidy program was installed as a kind of back-door socialism.

    For example, the insurance industry has to have some form of age rating, since older people cost six times as much to insure as younger ones.

    So the ACA allowed a 3:1 age rating, but then seeks to mitigate the result bby giving subsidies to older persons with modest incomes.

    This immediately raises hell from older persons with middle class incomes
    who are in the individual market.

    The solution of course is a standard premium for all ages, paid for by higher income taxes.

    Back-door socialism is less efficient, more contentious, and probably in the end more expensive than up-front socialism.

    • John Ballard says:

      Yup.
      Strikes me as a no-brainer.

      One fly in the ointment is the the vast difference between bills and costs. Few health care analysts discern the difference between professional compensation and corporate profits. And ACA assures at least twenty percent of premiums feed the non-medical private sector, whether from subsidy or private pay. The accounting remains very muddy.

  17. BC says:

    G-Mom – I am kind of responding late to your article, but I wanted to wish you well. I understand the problem you have.

    I had something so rare that it required going out of state because that’s where the specialty was.

    I got the important thing taken care of, but not the recommended add on treatment. I’m 2.5 years out and healthy so I don’t think about it anymore.

    My guess is those that absolutely need to go out of state are a very small percentage of the population, but when you’re one of them it’s not a trivial issue.

    Best of luck!

    • G-Mom says:

      BC,
      Migraine effects 11.8% (30.6 million people) of the American population, yet six states have NO headache specialists and thirteen states have less than two. With rarer conditions, these specialists are even fewer and tend to concentrate at top research centers, so interstate patient/doctor interactions are often vital for treatment.

      • BC says:

        G-Mom,

        Any idea why there are so few headache specialists? 30 million is not a small number.

        My thing is 1 per million or 300 new cases in the entire US per year. The NORD database says it’s 8 new cases per 10 million.

        The specialists are at about 8 hospitals in the US and like you said it’s all at top research centers – Mass General, HUP, MD Anderson, etc.

  18. G-Mom says:

    In answer to the question of why I am in a worse situation now, rather than before the ACA, I respond by saying: physician choice. If I am dropped now, my family (or I) must pay for insurance that I cannot use because the physician pool does not either know how to or does not feel comfortable treating me. I must now also pay cash to see the current doctors that I have been seeing in addition to premiums for a doctor that I cannot use.

    • BC says:

      Understood. It’s the problem of high minded ideas with little thought to execution or consequences.

    • John Ballard says:

      Revenue and profitability trump medicine in too many cases. Even the non-profits carry a slush fund, the bigger the better. It’s the price we pay for treating health care as a commodity instead of a right. Check out this short clip from the much longer documentary, Money-Driven Medicine.

      http://youtu.be/EJm5eMF7A18

      Listen carefully to Dr. Berwick. This is the man the president wanted to be in the driver’s seat at CMS, a guy with sterling credentials beloved and respected by all who have ever worked with him. But along with a string of other potential appointments, his name was never formally submitted because political opponents used the threat of hold or filibuster if they were nominated.

      I am convinced that had Dr. Berwick been allowed to run CMS the recent fiasco of the ACA rollout would not have happened. A few problems were inevitable for a project of this magnitude, but not the mess we have witnessed.

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