My mother fell through the cracks of the system and died

Recently, my mother died.

She was giving, kind, funny and would do anything in her power to help those who needed her. As a single parent divorced from a drug addict, she was all that I ever truly had in the realm of parenting and, as a result, she was everything to me. And she touched and was loved by so, so many people. She also had asthma and, most years, made a little less than 30k a year from her three, sometimes four jobs. Too much to qualify for state health insurance and enough to pay for (with the assistance of her employer) private insurance; but too little to consistently afford the high co-pays on her inhalers on top of the crushing expenses of electricity, heat, rent and food.

Thus, her asthma went unmanaged for long stretches of time, with my Mom relying on colleagues rescue inhalers and nebulizer machines to get through rougher spots. Sometimes, however, those things were simply not enough. One Friday, she went into respiratory distress. Despite a friend’s best attempt at CPR, it is clear that she went several minutes without oxygen reaching the brain. The damage was extensive and her chance of recovering was slim. She was, essentially, brain dead.

As a family, we decided to respect her previously made wishes and remove the ventilator and feeding tube. She died within twenty four hours. Obviously, nobody can say for sure what caused everything to go so, so wrong; but, just based on what I, as a layperson, know of asthma and of my mother’s prior heath history, I have a feeling that her asthma could be found at the root of this tragedy. More importantly, an unmanaged case of asthma could be found. An asthma that went unmanaged because, despite my mother working herself to her physical limits, she could not find the money to pay the co-pay on her inhaler.

As her daughter, her family, I’m furious. My mother gave her all to help and bring joy to others and, in her sickness, we, as a society, felt it too much of a burden, too anti-capitalistic to lend a hand to help her pay for a needed medication. Now she’s dead. I’ll never be able to see her, to love her, to hold her again; her sisters and brothers will be deprived of the same; her friends and co-workers will have to trudge on without someone who they could always count on; and a group of five year olds who she taught and cared for at the daycare she worked at will be left wondering where their teacher has gone.

That — every aspect of it — is wrong. And I’m left wondering how many others like my Mom are out there. People who, to no or little fault of their own, are left falling through the cracks of a system that has and continues to fail those it promised to help and protect.

Erika S. is a college student. 

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  • http://profile.yahoo.com/7M7TPTWIZVMLOGAE4PKFRQUDYI John

    Erika, I am so sorry for your loss.  I wish you could have found someone who would have been able to help you. Many of the drug companies would have sent the drug to your mother free of charge  if she was unable to make the co-payments. These programs have been a lifeline for many patients. Maybe you can help others in your mom’s name? And I bet you would do it with your heart and soul and would have a lot to give to others, just like your mom. It sounds like she was a beautiful person.

    • http://www.facebook.com/profile.php?id=100000194802325 Erika Svenson

      Hi John,
      When we initially looked into prescription assistance programs — including those from pharmaceutical companies — the information we were provided always gave the impression we did not qualify, due to the fact that my mom did have prescription coverage and/or my mother made a bit too much and/or her particular medication was not covered. Admittedly, this was not recent and that may have changed.

      It would be an honor and incredibly healing to help others in my mother’s name. Since this has happened, I have wanted to do nothing more than that. I want to tell her story, to advocate, to inform people that those like my Mom are out there. Our story is not a rare, exceptional occurrence; it happens across the country. I don’t want anyone else to have to feel this pain and would do anything to prevent this from happening to anyone else.

      Erika

      • http://www.facebook.com/profile.php?id=1624302541 Bruce Ramshaw

        I’m so sorry for your loss, Erika.  I am impressed with (and inspired by) your passion to help others.  I have been learning about the health care situation for the past eight years (full time for the past 2 1/2 years) and it is in a very sad state right now.  But, there is hope- because of people like you (patients and family members) and other physicians and healthcare workers who are realizing we need to transform our system structure.  In understanding why the system is like it is, it will help to understand the potential system structural changes that will be required to design a system where people care for each other out of love and compassion.  Several books helped me understand why our system produces the lack of compassion we so often see: Obedience to authority (Milgrim), The Lucifer Effect (Zimbardo), Drive (Dan Pink) and Unmasking Administrative Evil (Adams and Balfour) are a few that come to mind.  Please don’t stop using your passion to help transform the system- we need you and your story.

        • http://www.facebook.com/brianpcurry Brian Curry

           Minor quibble, but Milgram actually found the opposite of “obedience to authority”.

          • http://www.facebook.com/profile.php?id=1624302541 Bruce Ramshaw

            Milgrim found that the structure of the system/environment could produce obedience that would allow a normal, healthy person to cause harm to another human being (even potential kill them). I see the exact same thing regularly in hospitals and within our health care system.  His studies help explain how a hospital front-line worker could not speak up when they know that a patient is being harmed or an insurance company worker could deny care when they know it could cause harm to a person.  His studies (he did dozens of them) really help explain the behaviors of people functioning badly within systems designed in hierarchies- the behaviors of the worker and the harm done to people are very predictable.  To your point though, he also showed how people can be defiant to authority (to prevent harming another person), but this will require a different system/organizational structure than the one in which current health care organizations are designed today.

          • http://www.facebook.com/brianpcurry Brian Curry

             What Milgram actually showed was that people would be willing to do harm to another person based upon their estimation of the value to be derived from it. To wit, many of the interviews of subjects from the Milgram experiment revealed that their willingness to continue was significantly affected by the fact that they believed that what they were doing was important with regard to scientific discovery.  As far as obedience to authority, the one variable that in fact led to defiance in 100% of subjects was a direct order.

          • http://www.facebook.com/profile.php?id=1624302541 Bruce Ramshaw

            I think you have parts of it- I just finished the book and Milgram is very clear that there were many variables that contributed to the behavior- no one variable produced 100% obedience or defiance.  It is one of the first set of psychological experiments that supported the complexity theories/science- we are much more complex (as are all biologic organisms) than could be predicted by one variable, and the environment/system structure is much more influential than our own character.  You’re right that one of the rationalizations used by the group of people who were obedient (shocked people all the way to the highest level) was that they believed that the experiment was of scientific importance, but that was not the explanation for all of them.  In fact one was a nurse and she basically did it because

          • http://www.facebook.com/profile.php?id=1624302541 Bruce Ramshaw

            (according to Milgram) because she was just following the rules as she was conditioned to do in the hospital environment.  Sorry for the cut-off and thank you, Brian, for the dialogue.  Thanks again Erika.

        • http://www.facebook.com/profile.php?id=100000194802325 Erika Svenson

          Thank you, Mr. Ramshaw. This will certainly not be the only time that I tell my story. I have to keep telling it; I am compelled. As I stated, our situation is certainly not a rare one and it enrages me that what just happened to my family could happen to anyone else’s. That another child could lose their mother; a mother lose their child; a brother lose a sister; and vice versa. People need to know, need to hear, that we are not doing too much — we’re not doing enough; that, despite working extraordinarily hard, people fall through the cracks. People need to remember that, when they fund or take away/refuse to fund assistance programs, they are not just throwing money at or taking money away from a total, they are impacting human life. People need to learn to see the person, the human, the family and the love behind any dollar sign. Hopefully, an opportunity soon arises or comes into my awareness that will allow me to continue to scream that message from the rooftops.

          I will certainly be looking into those books and look forward to reading them. Thank you for the suggestions.

          Erika

          • Dorothygreen

            Erika – you have picked a good site to scream about your
            mother’s needless death because she could not afford inhalers – KevinMD allows people
            to speak and people listen to KevinMD.  And
            there are many of us outraged as we learn more and more about the inequities,
            waste, fraud, crony capitalism that has been embedded in American health care
            since well…since forever.  

            People have testified before Congress about availability of
            insurance and medicines in the health care reform debate.   These have been instrumental in getting the
            Patient Protection and Affordable Care Act passed.

            The major question now is can health care reform get past the
            crony capitalist speed bumps to ultimately be a Health Care System – for the
            people, by the people and of the people. (I can’t agree that corporations like
            Big Pharma are persons).

            You seem quite savvy now about health care issues.  If you are specifically interested in what
            the ACA contains, Inside National Health Reform (McDonough) and another more
            academic book Remedy and Reaction (Starr) are relatively inexpensive about the
            history and details of the new law.  There are other new books about the big
            picture issue: Crony Capitalism (David Stockman), Republic Lost (Lawrence
            Lessig).

            Your specific quest, as I read it is: will health reform change
            the relationship of Big Pharma to politicians/FDA so people like your mom don’t
            have to worry about getting inhalers?

            It didn’t happen with Part D of Medicare (first a law was made
            for it to be illegal for our government to ask for a lower price on pharmaceuticals
            – Medicare had to pay full price – Free Lunch (Johnston) – chapters 21-23 deal with health
            care.  We all got stuck with this bill
            including seniors through the infamous “Donut Hole”.   BTW – several
            politicians became Big Pharma Lobbyists right after Medicare D passed.   Still the issue between food and medicine
            existed for poor seniors.  

             

            Also, the US
            has been experiencing shortages of injectable generic drugs because of crazy
            laws.  No problem in other countries.  One can easily get brand names if you have
            the money.  Kids with Leukemia affected
            and may die without their medicine.

             

            And I just checked out a web site regarding HFA
            inhalers.  There are a lot of angry
            people with asthma here because of the increased cost and inefficiency of the
            new inhalers and because Primatene has been taken off the market.  One now MUST always get a prescription and pay
            more for their inhalers.  Who wins here? 

             

            http://www.consumeraffairs.com/health/hfa_inhalers.html 

             

            Yes, I see the ads where a Big Pharma company – with a person
            speaking very fast or a message written in small print on the screen – might
            pay for your drug if you cannot.  It’s
            insulting for anyone to have to do this. 

             

            Your screaming and actions will help – link up with others
            who can have a voice through petitions and forums and any why you can get the
            message to the policy makers.

  • Anonymous

    The medical system here is a cruel joke.
    No one cares about anyone here.

    It’s all about minting money from people’s misery…

    Thoroughly rotten to the core…

    The same medicine this poor woman worked all her life to obtain, can be bought for nearly 50 dollars for a months supply in other countries.

    I am ashamed to call myself a doctor madam….
    It’s moments like these , where I just lose it.
    I wish I was there for you mom….
    I would have treated her for free……absolutely free

    • Tammee Johnson

      What you said is so true and i have known it for a long time but its nice to see a Dr admit it.You said “no one cares about anyone here” but it sounds like YOU do and that gives me hope there are still some caring Dr’s still out there!!!! I applaud you for your honesty and compassion

    • http://www.facebook.com/profile.php?id=100000194802325 Erika Svenson

      Dr. Baker,

      Your words have touched me and I want to thank you for writing them. Truly.

      But do not feel ashamed to be a doctor. Even in the midst of our healthcare system, your profession is still a noble one. The doctors in our life have done amazing things. I am thankful to all of you.

    • Anonymous

      Dr. Baker, why did you remove your comment on the medical school thread?  I wanted to reply to you there, but couldn’t.  Did something recently happen to fuel your anger, or just a building frustration with the system.  As a patient, this rising trend of unhappy doctors is very worrisome.

      • Anonymous

        Madam…I didn’t remove those comments.

        I am not an unhappy doctor, a crazy weirdo .
        I am unhappy at the system.

        And so should you be.

        You should be worried about how insurance companies might trick you when that awful day will arrive.

        • Anonymous

          I posed the question to you because as a cancer patient I was concerned that many good doctors would be leaving the profession because they were unhappy.   I certainly didn’t mean to imply that unhappiness equated to “crazy weirdo”.  My own doctors don’t shy away from subtle gripes. I’m sorry for the misunderstanding.

          • Anonymous

            Madam doctors are leaving as they see the system as it is.
            A monopoly…..a business…

            Forget about empathy, understanding and service…

            It’s all about money money money…
            The sicker you get…..the better it gets for us..

          • http://www.facebook.com/people/Tom-Fitzsimmons/1405121136 Tom Fitzsimmons

            What is going on here?

  • Fred Dempster

    Our country has slowly slid from “We the People” to “Me” as faith and compassion have been replaced with what we read about daily. Agreed, this column speaks about medical care vs. healthcare often, and there are many not covered by any program. I’m lucky as my wife still works, but my sister and many friends out of work over a year have no coverage and are “offered” the highest non-discounted rates or are asked to pay in advance at the ER. While folks struggle with ICD-10, people are dying …

    • http://www.facebook.com/profile.php?id=100000194802325 Erika Svenson

      Mr. Dempster,

      You are absolutely correct on this. People are dying and it is not OK. Our system is certainly in need of revamp.

  • http://twitter.com/ocdgirl2000 Lynne Siegel

    I’m a registered nurse, myself. I was just discharged from Washington Hospital Center, with some of the greatest (supposedly) care & physicians. All I can say is, It’s a miracle I’m still alive after some of the incompetencies in delivering medical services, I had to be on the receiving end, of . It’s a good thing I’m an RN so I could refuse the medications that would have seriously compromised me while I was there, and It’s great that I can sort out the discharge summary, with the list of meds I was given, which was totally “off the wall” by some idiotic intern. All in the name of tossing me out the door as quickly as possible. I have advanced heart disease, and it’s a “wonder” why that is?, working in this field, isn’t it? LOL! After being around the new nursing school grads it made me ashamed to still be part of the same profession. I’m glad I’m retiring in less than 2 years, and I have advanced directives and a living will. I have no expectations to live very long in a society that has no respect for it’s elders.

    • http://www.facebook.com/profile.php?id=100000194802325 Erika Svenson

       Ms. Siegel,

      No respect for its elders — and no respect for the sick, disabled, broken and forgotten. Our system sees dollar signs and forgets the people behind them. It is a tragedy.

      I hope you recover your health. I wish you well

      Erika

  • http://www.practitionersolutions.com Niamh van Meines

    So sorry for your loss Erika. It was truly an unnecessary death. We all know that the way the healthcare system is constructed is an abomination, but to hear how it negatively impacts people and results in a death, is very sobering. I hope you find the strength to channel your justifiable anger into something positive that honors your mother. This wonderful piece you wrote is a good start & reaches so many people who stand beside you and support you.

    • http://www.facebook.com/profile.php?id=100000194802325 Erika Svenson

      Ms. Meines,

      Thank you for your kind words. They mean the world and a moon.

      If this piece reaches and, perhaps, motivates or touches or enlightens one person, then that makes writing it — as painful as it was — worth it. Though I don’t propose to have all the solutions, I do know that our healthcare system isn’t working. That needs to change.

  • http://www.facebook.com/profile.php?id=570950188 Jo Johnson Young

    This is, unfortunately, an all-too-common occurence. I was an ER nurse for many years and one of the cases that stands out in my memory is that of a woman who was brought in by EMS having suffered a hemorrhagic stroke. Why? Because when her husband retired after many years of working hard, he could not afford to pay for her blood pressure meds. (This was long before the Medicare D plan went into effect.) It’s no wonder that many people cross the borders to Canada and Mexico to get meds, and that’s if they can afford the trip. So sorry for your loss, Erika.

    • http://www.facebook.com/profile.php?id=100000194802325 Erika Svenson

       Ms. Young,
      That is such an awful, heartbreaking story. Thank you for sharing it. They need to be told and they need to be heard. People need to see why our system is failing.

      Erika

  • Anonymous

    This lady now has to live her entire life without a mother.

    How sad is that……how sad is that!

    Only because she couldn’t pay for nebulization and inhalers….
    This is so sick….we are so sick as a people.

    These medicines cost pharmaceutical companies in the fractions of “cents”.
    That’s how cheap these drugs are….but by the time you add a label and a box with a nice scientific name on it
    They cost in the hundreds and thousands.

    It is a curse to get sick in this country….

    No words, no sorrys can get her mother back…

    This is unbelievably sick…..
    With all the trillions we supposedly spend on our health care

    We poison are people with vaccines, high fructose corn syrups, junk food
    We don’t teach them the principles of medicine or economics…
    Which aren’t that difficult to understand if explained simply…
    Health education is a joke

    Your 100 percent apple juice is 100 percent high fructose corn syrup

    And when they come to us, fat, diabetic and dumb…
    We smash our bills on there faces…

    Where are we headed as a country…..

    “circling the drain” as George carlin used to say.

  • Anonymous

    It usually isn’t the poor who suffer from the high cost of healthcare – they are either on Medicaid or are “self-pay” with no intention (or means) of paying.  They get the treatment and are on their way – no worse off.  People who make too much to qualify for assistance and who want to pay their bills but don’t make 40K plus/year skip tests, ignore symptoms because they can’t afford the crazy-high medical bills that follow.  High deductibles or high insurance premiums – take your pick as to the way you can implode financially.  If medical costs were somehow reined in maybe things could be realistically budgeted for.

    • http://www.facebook.com/profile.php?id=100000194802325 Erika Svenson

      To be fair, Medicaid does come with its own host of problems, as declining reimbursements are resulting in less and less physicians taking it, which lowers access to care; however, there are a large group of Americans in this country who exist in the midst of a gap of services, who we miss in our Medicaid eligibility. This is what needs to change, as nobody — not my mom and not anybody else — deserves to have this happen.

  • Sarah Wells

    I would have paid my mom’s co-pay for her inhaler.   Why didn’t you?

    • Anonymous

      Wow, what a rotten comment. How do you live with yourself?

      • Sarah Wells

         Again,  helping a parent afford medication is something I did myself.

        • Anonymous

          No, you’re not a troll. You’re a mean-spirited, self-righteous propagandist who uses the sufferings of others to make a political point. 

          • http://pulse.yahoo.com/_2LRZNHDZS6DU45WQ567LPQ7CMI ninguem

             ^^ what southerndoc said  ^^

            (as usual)

          • Sarah Wells

            What point was I supposedly making?   By that standard, the authour of the piece was using the suffering of her mother to make a political point, which I hardly think is the case.  If I am making a political point, it’s that the fda has taken away cheaper and more effective delivery devices for spurious and perhaps industry-stroking motives.

          • Sarah Wells

             Hardly.  What political point would that be, btw.  I don’t see one.

    • http://www.facebook.com/profile.php?id=100000194802325 Erika Svenson

      Ms. Wells,

      If I could have, I would have in a heartbeat. I am a college freshman who is living off of educational grants and loans; I have been unable to secure a job in the local neighborhood; and have no savings or other assets to utilize. I could not afford the co-pay. If it were not for government run healthcare programs targeted at minors (I started college early), I would have no health insurance myself.

      Please refrain from making assumptions.

      Erika

      • maryhirzel

        Erika,

        I am so sorry for your tremendous loss. 

        I would like to tell you that, in truth, the lack of adequate finances was not the only “crack in the system” your mom fell through.  Perhaps the most pernicious evil that exists today around “healthcare” options, is the fact that we have a government protected medical monopoly in allopathic (drug/slash/burn) medicine.  We’re taught to think it’s exists because of “progress” and advanced “science.”  But, it really is protected – including harsh sanctions on professionals for even claiming there is another way – because it makes TONS of money for many, many people.  M.D.s are even deprived of the opportunity to learn less harmful/less costly means of dealing with ill health and many chronic illnesses are actually caused by allopathic “treatment.”

        This comment will bring the Quackbusters out of the walls to screech that I don’t know what I am talking about.  However, I urge you to begin to investigate – with an open mind – what other means exist for avoiding health problems, or coping with them under a totally different paradigm.  I’m sure that, if your mother’s death can prompt you to find another way for yourself and, someday….., her grandchildren, your mother would be very happy to have made the sacrifice.

        If you are open-minded enough to be inerested, I suggest you begin here for a very good, concise video that will give you an overview of the path of inquiry I am suggesting to you:
        http://www.youtube.com/watch?v=ZAhu6oa_2Ss&feature=channel_video_title  (Perhaps you can also find the video of Mark Hyman’s testimony before Congress – which , of course – they politely ignored.)

        After watching that, google around with strings like – orthomolecular asthma, or functional medicine asthma, etc.  Look into the history around researchers like Linus Pauling (only scientist ever to win two unshared Nobel Prizes, Roger Williams, Abram Hoffer, Jeffrey Bland, and more.  A website – http://www.doctoryourself.com – is an invaluable jumping off point.  Sign up for the Orthomolecular News Service, and the Food Matters website.  Avoid prescription drugs and vaccines, eat smart and peck away at your investigations.

        And, no……  I am no kind of a physician.  If I’d gone to the marine-corp style training that we call medical school, I would never have been able to get beyond the idea that “If this junk worked, we’d be doing it.  It’s blatant tin-foil hat quackery.  I know because my pharma-infiltrated/controlled med school told me so.”  I simply learned the hard way, over the last quarter century, after sacrificing my children’s lives to the gods of allopathic (pediatric) medicine.

        Every good wish to you, Erika.

      • Sarah Wells

         I thank you for the civil reply.  It was the first question that occurred to me;  I did not see it addressed in your post -  I think it’s relevant and  I hope you consider it asked on a less accusatory basis than others presume.  How much burden   family should be expected to   shoulder with regard to health care and health care expense is a necessary discussion. Above I relate something of my own experience with a parent.

        Megan McCardle of the Atlantic writes today about a related topic – patients discharged early to the mercy and care of family members who might or might not be up to the task – hospitals cutting losses on drgs by pushing patients out “by rule” -  a set guideline of days or hours – when they still need substantial nursing care (injections/IVs,  drains cared for) and who are not fully ambulatory or able to use the toillet.

        McCardle notes this happens more frequently to poorer or more poorly insured patients, and that  the system has gaps and deficiencies on this point that can harm patients and burden family members to the point of overwhelm.  

    • Anonymous

      What a totally assinine comment.  This is a college student, pouring her heart out and you are pouring salt on wounds. Go away!

      • Sarah Wells

         I am not a troll.   I have paid for my own now deceased mother’s medications with an extra job.   And any working person should pitch in to help a parent who can’t afford medication necessary to prevent sudden avoidable death.    That said,  the push to make inhalers more profitable (on the pretext of saving the planet) by replacing CfC generic inhalers with pricey new versions is to blame.    

        The fDA  knew this would happen and was happy to help it happen.

    • http://www.facebook.com/people/Tom-Fitzsimmons/1405121136 Tom Fitzsimmons

      She could have paid how? She could afford how much, do you suppose? This is a weekly expense, at least. I sure hope you don’t work in a medical profession but to tell the truth, there’s one of you on every shift. Get back under your bridge, troll!

  • Sarah Wells

    And also – hey, thanks a lot fDA,  for getting in bed with the profit-driven changes to inhalers – everybody know the cfc’s from inhalers weren’t going to kill Gaia,  and instead you decided to kill people who have less effective and more expensive medicines to use.

    • http://www.facebook.com/people/Tom-Fitzsimmons/1405121136 Tom Fitzsimmons

      True, as I stated somewhat differently above, but under the bridge with you nonetheless.

  • Michal Haran

    It is so sad that so many people fall between the cracks of modern medicine. 
    It seems like there are so many boxes you have to fit into, in order to receive the care that modern medicine and technology can provide. 
    your illness should fit the right box, the medications you respond to should fit the right box, the way you respond to your illness physically and emotionally should fit the right box, and your healthcare reimbursement should fit the right box. 

  • http://www.facebook.com/profile.php?id=100002934866034 PJ Dew

    I totally understand this-I was working at my very first nursing job after a year of hell working 2 part time jobs and nursing school 40 hours per week, and before my 90 days was up, Bam!!  Type ONE diabetes!!!  You have no idea the cost of being a Type 1 diabetic!! Insulin is insanely expensive, not to mention test strips are $1.00 a piece.  Syringes, Endo, Primary, etc.  And, this wasn’t stuff I could go without.  I would die in as little as 2-3 days without life giving insulin.  (Thank you Dr.’s Banting and Best for my life!!) I could not get state assistance b/c I made around 12K the first few months out of school.  I made too much money!  WTH!?  We should be ale to get the medical care we need without being destitute or choosing between medication, food, utilities, etc.

  • Dana Sayre-Stanhope

    This isn’t a failure of modern medicine (there are enough of those, too).  This is a failure of our profit-driven health care system.  As long as the insurers, big pharma and hospitals primary responsibility is to their shareholders, the patient will suffer.

    • http://www.facebook.com/profile.php?id=100000194802325 Erika Svenson

       Yes, This, absolutely. In my mother’s case, had she been in a system where she could actually access her medication, she likely would not have died. The treatments used for Asthma, though not curative or perfect, are fine; but they can only work if someone can actually access them.

  • Anonymous

    The tragedy of inadequate access to medical care and basic treatments happens countless times daily across this country. If we included all the costs that individuals bear in our American health care system, including the cost in human lies, compared to the rest of the world we would be the most barbaric!

    The author view the situation as that of a medical shield providing care to many EXCEPT for those who “fall through the cracks. Unfortunately the medical shiele is becoming one that keeps more and more people out and those “slipping through the cracks” are the ones who are still able to even get medical care. 
    Erika S has every right to be angry, and so do many more Americans!

    • http://www.facebook.com/profile.php?id=100000194802325 Erika Svenson

       Hello PainWithDignity,
      To be clear, I do not feel that our health care system is just inadequate for those such as my mother, who fall into a gap between still needing services but not being eligible for them. I am aware that, at this moment, it fails more than just that group, from Medicaid (and now, Medicare) recipients who are unable to find physicians to accept their insurance to those with insurance and who can afford day-to-day care; but end up fighting with insurance companies and/or struggling when something more than the day-to-day hits.

      In this country, we have some of the most innovative, up-to-date medical treatments. It is a failure that, despite that, we cannot manage to create a system that allows its citizens to actually benifit from it.

      • Anonymous

        So very well said Erika! Thank you for posting your article and all your comments!

      • http://pulse.yahoo.com/_2LRZNHDZS6DU45WQ567LPQ7CMI ninguem

        “……Medicaid (and now, Medicare) recipients who are unable to find physicians to accept their insurance….”

        Sorry for your loss, I have to work with getting medicines for the uninsured all the time; between samples and patient assistance programs, and getting most of what’s needed with the cheap stuff, even if not perfect, is something I deal with every day with patients.

        As pointed out elsewhere, other countries do have their equivalent of Medicaid, and their equivalent Medicaid recipients have the same access problems. There are abundant cites in the French press of access problems with their own Medicaid patients. Most of continental Europe is NOT single-payer, it’s “socialized” in the sense of a highly regulated insurance market, which you still have to pay for. If you don’t (or can’t) pay, you end up in their own safety net systems, and the docs there walk away from their Medicaid for the same reasons, the <> as the French put it, and all the other usual complaints.

        • http://www.facebook.com/profile.php?id=100000194802325 Erika Svenson

           Hi ninguem,
          The primary issue with Medicaid is declining reimbursements. Seeing the impact that has had on that part of the system, I would not never advocate us just copying France (etc) system’s, as their physicians are even more poorly reimbursed (though, they also have less debt).

          I would also like to point out that, if you go through my comments, you will notice I never advocated a particular system or way of doing things. The point of me telling this story was to bring awareness to the fact that stories such as this do exist and, hopefully, to begin a conversation of sorts on how to improve it. As I stated in another comment, I don’t pretend to know or have all the answers.

          And thank you for the work you do. I am sure it has helped many.

          • http://pulse.yahoo.com/_2LRZNHDZS6DU45WQ567LPQ7CMI ninguem

             This deserves the repeat post:

            You have a healthier approach to the problem than many experts. Given
            your tragedy, you have no reason to be objective, but you are anyway.
            This is to your credit. Your mother would have been proud.

      • http://profile.yahoo.com/5K3LXDV4P4HQLTFLJ4EGJJBD7M Sarah Stone

        The thing is, most people in this country can and do benefit from our “healthcare system”.  Universal or free healthcare would create its own set of problems and new patients that it “fails”.  Look at the Massachusetts system.  Your mom actually would be hurt in a system like that because it caused premiums to increase, among the many other problems it has caused.  That plan has made it much harder to get office visits and increased ER wait time/visits… and that’s in the state with the highest ratio of doctors to patients.

        If you want to blame the government for something, blame them for voluntarily signing an international agreement to ban the safe, cheap, effective, time-tested CFC inhalers, which have very very very little environmental impact and absolutely deserved a medical exemption.  Of all the things in the world that have a realistic harmful impact on the ozone, CFC inhalers aren’t one of them.  They have such a miniscule impact, compared to all the other man-made pollutants, that there was absolutely no reason for them to be targeted, especially because they were used to treat a very common medical condition.

        The CFC inhaler ban was a political move (and like most political moves, probably involved some corruption).  It was made without seeking input from the medical community.  It allowed pharmaceutical companies to drop super cheap inhalers and start producing very expensive HFA inhalers.  Beside the cost issue and despite what studies say, almost every asthma patient (including asthma patients who are also physicians) will tell you that the HFA albuterol inhalers simply aren’t very effective.  The manufacturers will argue that they just “feel” different, but the patients will insist that they actually act different than the old inhalers.  People who could have stopped an attack with an old CFC inhaler now sometimes find that they need to go to the ER for a nebulizer treatment.  The CFC ban has increased healthcare spending in multiple ways and surely increases mortality in asthma patients.  That’s completely unnecessary.

        • http://www.facebook.com/profile.php?id=100000194802325 Erika Svenson

          Ms. Stone,
          I am aware many have benefited from our current system. I certainly have as, as I previously noted, Medicaid and similar plans are what have allowed me to receive medical treatment. I am eternally thankful for that, especially since I suffered from a bout of severe illness 2 or so years ago that required extensive treatment. I never said there was nothing positive about the system.

          As for the care in MA, as a student currently studying in that state with a lot of family members living there, I want to point out that the reports about the problems the state’s system have caused are overblown. Do we sometimes have to wait a little bit longer to get care? Yes, we do; however, it is, in most parts, not months or years. But do more people also actually have access to care? Yes, and I have met many who were once like my mother who now have a very different life than she. Furthermore, a lot of MA’s problems are not with the system itself; but our severe shortage of physicians.

          As for your last paragraph, I absolutely agree with you. Pharmaceutical corruption and its impact on healthcare is unacceptable. Our government allowing it is even more so.

          Erika

          • http://pulse.yahoo.com/_2LRZNHDZS6DU45WQ567LPQ7CMI ninguem

            “Pharmaceutical corruption and its impact on healthcare is unacceptable.”

            You’re missing what the Tea Party and the Occupy movements have in common.

            Government is in bed with private industry. Tea Party says it’s the government that’s corrupt. Occupy says private industry is corrupt.

            They’re BOTH corrupt.

            You want to see another example, besides albuterol? Try colchicine, used to treat gout, and some relatively rare diseases like Familial Mediterranean Fever. The drug was an extract from the autumn crocus, and its effectiveness to treat attacks of gout was known to the ancients. Having existed before the United States, let alone the FDA, the drug grandfathered in, and never got official FDA approval. The drug used to cost pennies. Dirt cheap.

            The FDA got it into their heads to clean up the grandfathered meds. Think of medicines that existed from ancient times, there’s a number of them. So, companies sprang up, they did the research to “prove” what ancient doctors in togas and sandals knew. They then got market exclusivity as a “new” drug.

            Colchicine went from about five cents a pill, to five DOLLARS a pill.

            http://adenovir.posterous.com/url-pharma-and-colchicine-colcrys
            http://forums.cnet.com/7723-6130_102-390471/fda-grants-monopoly-on-folk-remedy/
            http://online.wsj.com/article/SB10001424052748703630404575053303739829726.html
            http://consumerist.com/2011/04/colchicine-a-drug-primarily-used.html

            I like this link best, from Medscape:
            http://www.medscape.com/viewarticle/744408
            “Outraged Politicians Demand Gout Drug Price Probe”

            The politicians are SHOCKED to know this happened. The politicans CAUSED this problem.

            Until people realize that Occupy and Tea Party are seeing the same problem from two different angles, and realize that rent-seeking private interests collude with equally corrupt government to rig the game, we’ll just get more of the same.

  • http://www.facebook.com/people/Tom-Fitzsimmons/1405121136 Tom Fitzsimmons

    Let me point something out here. Albuterol inhalers, one of the most prescribed products in the world, used to cost ten bucks, generic. When they made them take out the CFC propellant this was considered a ‘formulary change’ and allowed the name brands to raise the price to three or four time what it was. I said at the time that ‘people will die because of this’. This is just the basic rescue inhaler. The fancy stuff costs much more than even that.

  • Anonymous

    First, I am really sorry about your mother’s death and the lack of care that she received. This is such a good example of why we need universal single payer health care for all. If she were English or Swedish or German this would not have happened. Shame on us.

    • http://pulse.yahoo.com/_2LRZNHDZS6DU45WQ567LPQ7CMI ninguem

      Sorry, these things do happen in those countries as well. Over a thousand asthma deaths in the UK, most could be prevented, same as here, and low socioeconomic status is a risk factor there as well as here.

      Doctors Without Borders has run clinics within France itself. They have their own communities that cannot access healthcare.
      http://www.msf.org/shadomx/apps/fms/fmsdownload.cfm?file_uuid=C337F2F9-3E7C-48BD-88D5-74B14FB9AE83&siteName=msf

      French Medicaid is Couverture Maladie Universelle ( CMU ) Their doctors refuse to work with their Medicaid the same way our doctors refuse to work with our Medicaid.

      Google the French words:  CMU Refusé (refuser) médecin boycottent  in whatever combination you like, see the stories in the French press, their medical associations, and in their discussion forums.

      The English guy pulling his own teeth for lack of NHS dental care:
      http://www.dailymail.co.uk/news/article-1135582/Man-pulls-13-teeth-pliers-NHS-dentist.html

      and similar stories. Choose your poison if you want, but if you think these problems disappear across the pond, you haven’t read their own press.

      • Anonymous

        I haven’t read their press I have been there and have friends there and they would highly disagree with you. If all you read were the Fox papers or watch Faux News on TV your hair would be on fire, but that doesn’t make it true.

        • http://pulse.yahoo.com/_2LRZNHDZS6DU45WQ567LPQ7CMI ninguem

           Are you saying the French press is lying? Their discussion groups make it up?

          http://www.mutualite.fr/L-actualite/Assurance-maladie/Acces-aux-soins/CMU-le-medecin-traitant-est-votre-allie-contre-les-refus-de-soins
          http://www.rue89.com/2008/09/09/on-a-teste-pour-vous-les-medecins-qui-boycottent-la-cmu
          http://www.alternatives-economiques.fr/cmu–le-refus-des-medecins_fr_art_860_43778.html
          http://sante-medecine.commentcamarche.net/forum/affich-61-cmu-refuse-par-un-medecin

          Are you saying that Brits don’t die of asthma in the UK and that socioeconomic factors don’t count?

          And you pull out the “Faux News” trope, I haven’t seen that channel in a couple months, and accuse ME of ignorance.

          • Anonymous

            You are trying to make this personal which it
            is not. Do I think the press lies
            (in any country)? Yes, I know it does and sometimes it is an error of omission or
            of exaggeration. Their goal is to sell papers, not to do actual
            journalism. Real journalists are far and few between. Access to medical care
            for everyone is essential to having a healthy productive tax paying citizenry.
            Will it prevent all deaths? Of course not. 

          • http://pulse.yahoo.com/_2LRZNHDZS6DU45WQ567LPQ7CMI ninguem

             You’re the one making it personal. My hair’s not on fire.

            “…..Will it prevent all deaths? Of course not…..”

            “….If she were English or Swedish or German this would not have happened…..”

            How long have you had this memory problem, you’re the one who wrote this.

            You’ve been to France. You saw a few tourist spots, you know a few French yuppies. I’ve not been to the country, but I read and speak French, Canada’s nearby, grew up in the Northeast, and I can read the French press AND LOG ON TO THEIR DISCUSSION GROUPS, since you brought up biased media. It’s what French doctors, not to mention French patients, are saying among themselves.

            There’s plenty to admire with what the French did in healthcare. Whether it’s sustainable in hard economic times is another matter, you might have noticed a few riots in the news. But sill, it’s great. To say this never happens there…..and that’s precisely, word-for-word, what you said……makes you the ignorant one, and you’re the one who made this personal in the first place.

          • http://pulse.yahoo.com/_2LRZNHDZS6DU45WQ567LPQ7CMI ninguem

             http://www.indignez-vous.fr/medecins-deshonores-et-meprisables.html

            Médecins déshonorés et méprisables  = “Disgraceful and contemptible doctors” (for failure to accept their Medicaid)

            …..in case the readers think physician-bashing is unique to the United States…..

          • http://www.facebook.com/profile.php?id=100000194802325 Erika Svenson

            Thank you for your kind words.

            To be fair, ningeum is correct in saying that health disparity still does exist in many Euro countries. And (s)he is correct in pointing out that certain services — dental care, eye care and mental health care, namely — are difficult to access. 

            That said, it happens to a much lesser degree and they, for obvious reasons, have much greater access than Americans do. I obviously cannot say what our lives would have been like had we lived in Sweden, France or the like; however, I would bet that her chances would have been greater.

          • http://pulse.yahoo.com/_2LRZNHDZS6DU45WQ567LPQ7CMI ninguem

            Would your mom have done better in Europe? I’ll give that a definite maybe/probably. Access tends to be better, though wait times might complicate matters. There can be impressive wait times under the NHS.

            Swedish physicians I know……I mean Swedish nationals trained in Sweden and practicing in the USA……gave me an education when I mentioned no private healthcare in Sweden. I figured everything was socialized. I mean it’s Sweden for Pity’s sake.

            No, they’ve all told me they get private health insurance if they want services more than is covered in their system.

            Healthcare is two-tiered all over the planet. To create a single-tier healthcare system is like trying to regulate the tides or the weather. It WILL be two-tiered no matter what you do, because no country can offer perfect Cadillac services to everyone.

            The key is making sure the bottom tier is something you’d feel comfortable with, for yourself or a family member.

      • sFord48

        “Doctors Without Borders has run clinics within France itself. They have their own communities that cannot access healthcare.
        http://www.msf.org/shadomx/app…”
        I looked at this website and it appears to me that the work being done in France is for people with no legal status.  While we can discuss the moral implications of the French system not providing healthcare for those with no legal status, I don’t see how the presence of Doctors without Borders in France supports your assertion that “socialized medicine” is a failure.  If Erika’s mother had legally lived in France, she would have gotten the treatment she needed.

        Regarding the UK…
        “The spokesman said, “As well as 34 practices, we have seven dental access centres across East Riding of Yorkshire, including Beverley, where Mr Boynton could access a full range of NHS dentist services.”

        It seems odd to me that a doctor such as yourself would rely so much on anecdotal evidence.  Of course we are not discussing dentistry but if we were, the federal government does not require dental coverage for Medicaid recipients 21 years or older.  So here we have a sector of the healthcare industry with no “socialized” component.  How much better is access to dental care?  Maybe we should look at this story because anecdotes are so important.  http://abcnews.go.com/Health/insurance-24-year-dies-toothache/story?id=14438171#.T0_1qYfy-So

        Like Erika’s mother, I have skipped care because it was too expensive with my high deductible insurance plan.

  • Anonymous

    Moderator,

    Shouldn’t KevinMD post a notice that comments critical of allopathic medicine will be censored?  It would certainly prevent people wasting their time commenting for nothing……..

  • http://pulse.yahoo.com/_2LRZNHDZS6DU45WQ567LPQ7CMI ninguem

    I’m sorry, but a lot of people here have commented, correctly, that the decision to eliminate CFC’s from the inhalers greatly contributed to this problem. In doing so, the government took a cheap treatment and made it an expensive treatment. Individual physicians, and organized medicine said people will die because of this.

    They got sneered at.

    This is the result.

    Living in “socialized medicine” countries does not eliminate economic barriers to healthcare.

    http://www.patient.co.uk/doctor/Acute-Severe-Asthma-and-Status-Asthmaticus.htm

    The only reason I use scare quotes around “socialized medicine” is just ’cause the systems are radically different in other countries, (say, UK versus France), yet they still get lumped together.

  • http://profile.yahoo.com/5K3LXDV4P4HQLTFLJ4EGJJBD7M Sarah Stone

    It’s very very sad that this woman died and left her young daughter alone.  Unfortunately, she didn’t get the appropriate, consistent asthma treatment that she needed.

    I agree with other posters who mentioned the high cost of the HFA inhalers.  That certainly is a huge problem.  That’s only a fairly recent problem though, since the CFC albuterol inhalers were cheap and had lower co-pays.  So, getting albuterol was probably only a recent problem for her.  We don’t know this woman’s medical history.  If she wasn’t prescribed a daily LABA and/or ICS, then of course, she should have been.  Most of those inhalers are expensive and would have carried a high co-pay.

    I know the poster mentioned below that she and her mother looked into the patient assistance programs offered by the pharmaceutical companies, but didn’t apply because the patient was insured and the programs she looked at were for the uninsured.  That does put some people in an awkward spot, where they’re too insured to get assistance, and make too much money for public insurance that would have offered more affordable care.

    Patients in this type of position often think there’s nothing else they can do.  They think the only option is to pay for medication they can’t afford or go without.  Those without insurance commonly think they can’t possibly afford a doctor’s visit because they don’t have a couple hundred dollars to hand over.  I wish these people knew that there are other options, but they aren’t just going to be handed to you.  You need to research, ask around, and keep telling people that you need medical care and can’t pay.  Yeah, you might not have your pick of doctors or office locations, but most communities have offices with a sliding scale, which, in theory, would not require you to pay more than you can afford for an office visit.

    It is hard when you are too insured to qualify for the drug company’s patient assistance program (although I think contacting them could be helpful, since they might allow you in the program, offer a different program, or offer some other advice… the people running those programs really are looking to help people in need).  It’s hard when you have insurance but can’t afford your prescription co-pay.  There are other options, though.  Most doctor’s office get drug samples and will gladly set some aside for patients who can’t afford co-pays or the full cost of a medication… but they need to be told that there is a problem, otherwise, they can’t help.  No office would have said no to a patient with severe uncontrolled asthma who couldn’t afford inhalers.  Some offices will even request extra samples from reps if they know they need to set aside some samples for patients in need.

    Going to your local social services office can help, even if you already know you don’t qualify for public insurance.  Sometimes states or communities have special programs that could have helped out with prescription co-pays.  There are other organizations that could help out too, like religious or charity organizations.  Social services often know about programs or opportunities like that in their area.

    There often is a way to get medical care for those who can’t afford it, but it will only be discovered by those who look beyond the “ticket price” or insurance options.  Obviously, not every situation can be helped when things are unaffordable, but some can.  People just need to keep looking for options, keep telling people about their situation, and not suffer in silence.  I don’t say these things to demean the poster.  It’s just that it upsets me when people think going bankrupt or forgoing absolutely necessary medical care aren’t the only options. Other options have always been available for patients who seem to “fall between the cracks”.  There’s no conspiracy.  There’s no failing to deliver promises.  Unfortunately, people get sick.  With all the medical treatments available these days, I think people lost sight of the fact that illness is a natural part of everyone’s life at some point.  Illness isn’t caused by inflated medical costs or lack of universal health care.  Medical care can be expensive.  Fortunately, there are many ways to help with the costs, but the help may not be enough or people may not realize it’s there.  I’m not trying to be cruel.  I just think that in the long run, it helps to re-frame things and realize being sick can’t be blamed on the healthcare system.  Being sick isn’t fair.  Not receiving all the medical care that’s available isn’t fair, but life isn’t fair.

    I am truly truly sorry for the poster’s loss.  I know how hard it is to be sick and try to manage your health.  I wish things had gone differently and you had somehow figured out a way to get your mother’s inhalers.  People will probably hate me for saying these things and think I’m terribly mean.  That’s not my intent at all.  If it were my mother, I’d be mad, too.  I’d blame high drug costs and under-insurance and lack of free healthcare (even though I personally think that free healthcare is a bad idea… free things don’t have much value, even if it’s healthcare).  I know it’s easy to think “what if” and decide healthcare failed you and your mom.  In reality, medicine saved your mom for years.  Even if her asthma management wasn’t ideal, the treatment that she did receive prolonged her life for a very long time.  She was living on borrowed time, like so many others out there with chronic illness.  I hope you eventually find a way to be thankful that medicine got her that “borrowed time” and allowed you to keep her with you for so long.  I think if you allow yourself to accept that, you’ll have a better peace of mind.  You sound like a strong girl and I wish you the very best in life.  Thank you for sharing your story so we can all learn and reflect upon your experience.

    • http://www.facebook.com/profile.php?id=100000194802325 Erika Svenson

      “It’s very very sad that this woman died and left her young daughter
      alone.  Unfortunately, she didn’t get the appropriate, consistent asthma
      treatment that she needed.”

      Indeed. It is sad and tragic. And, while I respect your opinions and voice, I also feel you are making a string of assumptions.

      “I agree with other posters who mentioned the high cost of the HFA
      inhalers.  That certainly is a huge problem.  That’s only a fairly
      recent problem though, since the CFC albuterol inhalers were cheap and
      had lower co-pays.  So, getting albuterol was probably only a recent
      problem for her.  We don’t know this woman’s medical history.  If she
      wasn’t prescribed a daily LABA and/or ICS, then of course, she should
      have been.  Most of those inhalers are expensive and would have carried a
      high co-pay.”

      It depends on how you define recent. Though I am not certain, I do recall her having an inhaler consistently when I was younger. Over the past few years+, however, which is where my awareness truly begins, I can say that it has been a constant struggle. The attack that led to her death was not the first one that led to a hospitalization. We had other close calls previously. All due to the same, underlying problem.

      “Patients in this type of position often think there’s nothing else
      they can do.  They think the only option is to pay for medication they
      can’t afford or go without…I wish these people knew that there are
      other options, but they aren’t just going to be handed to you…”

      Our area does have a sliding scale clinic. You have to be uninsured to qualify. For others, she made slightly too much.As for searching out of our own area/location (not getting to pick area), this poses two problems: (a) gas money and (b) time. Other than gas being expensive, my mother did not have time to visit our own group with the frequency she needed, never-mind one that was out of area. She was too busy working.
      We did go to Social Services — and not just for medical care (we also requested heating assistance, etc). She was turned down and told she did not qualify for services (I qualified for Child Medicaid).Our physician’s office knew. Though they tried to work with us, I do not recall being offered samples, if they had them at all.
      And etc.

      “There often is a way to get medical care for those who can’t afford it,
      but it will only be discovered by those who look beyond the “ticket
      price” or insurance options.  Obviously, not every situation can be
      helped when things are unaffordable, but some can.”

      I agree; some absolutely can. But we did not sit passively and ignorantly without searching, though you assume that we did. She fell through a gap. If you believe that gap should be filled or not is one thing; but to deny that gap exists is blind.

      “Unfortunately, people get sick.  With all the medical treatments
      available these days, I think people lost sight of the fact that illness
      is a natural part of everyone’s life at some point.”

      Of course people still get sick. And some people die. Yet, the impact of health disparity can also not be ignored. My mother would have had asthma no matter what her access to care would have been — the treatment is not, after all, curative — but it very likely would have been managed better and it’s possible that, at age 54, she may not have died. That — the outcome of the illness — is something that can be blamed on lack of access.

      “Being sick isn’t fair.  Not receiving all the medical care that’s available isn’t fair, but life isn’t fair.”

      “Life isn’t fair” is not an argument against trying to change things, however. I believe that what happened to my mom — and others who have shared their stories — is an injustice. If the world is fair or not, injustices are not be fought, not accepted as unchangeable. 

      “I am truly truly sorry for the poster’s loss….I wish things had gone
      differently and you had somehow figured out a way to get your mother’s
      inhalers.”

      Thank you. I wish things had gone differently, too. More than anything, I wish that. “People will probably hate me for saying these things and think I’m terribly mean.”Mean? No, I do not think that at all. Ignorant? Perhaps. I told my mother’s story to dispel the myth, that is obviously still held, that, if the patient had only tried harder, they without doubt would have found a way to get treatment/get medication/survive. Many tried harder than their bodies could sustain and still fell into a reality of lack of access. If you believe anything should be done about that or not, people do need to know that these stories exist.

      “I know it’s easy to think “what if” and decide healthcare failed you and
      your mom.  In reality, medicine saved your mom for years…She was living on borrowed time, like so many others out there with chronic illness. ”

      Medicine did save my mother’s life for years and, as I expressed in another comment, I will be eternally grateful for the health care providers who administered it. It is not medicine that I feel needs fixing. It is the system it is delivered in. And there is a difference between the two.

      Furthermore, I did not write this out of self-pity or to find someone to blame. I wrote it because I am frustrated and have been attempting to get people to listen for years. The bottom line is that, in all likelihood, my mother’s death was preventable. I write because I want that known. I write because I want change. I write because, right now, I would do anything to have my mom back and I would do anything to prevent another child’s mom or another sister or another child herself from being taken.

      • http://profile.yahoo.com/5K3LXDV4P4HQLTFLJ4EGJJBD7M Sarah Stone

         Erika,

        I am not trying to make assumptions about you or your mother, nor do I mean to come across as judgmental or uncaring.  I realize that I know almost nothing about your situation and do not pretend to.  Aside from the parts where I specifically addressed you, I did not mean to direct my writing at you.  I should have made that more clear.  You came across in your writing as very well informed and involved.  I never assumed otherwise.

        I realize there are gaps.  I realize that’s a huge problem for some people.  I was pointing out some options out there to help fill those gaps.  I explained those options in hopes that other people may read this and think of those options if they know of someone who’s having trouble with medical costs.  I fully acknowledge that the problem your mother faced was very real and faced by many others around this country.  I did not mean to imply that you did not try hard enough.  I was simply trying to shed light on some options that not everyone is aware of.  Again, I didn’t mean to direct those comments at you and I’m sorry it came across that way.  This is a very popular blog and people read the comments, so it’s possible that someone in need could benefit from options I wrote about.  That’s all I was going for.

        The new expensive inhalers started being phased in about 3-4 years ago.  That’s probably when you noticed it becoming more of an issue.  I’m shocked that the doctor’s office didn’t do more to help a patient with severe asthma who couldn’t afford expensive inhalers.  They really should have, because they had the ability to do so.  I agree this probably could have been prevented if your mom had access to the medication she needed.  People with asthma should be able to afford an albuterol inhaler.  This is a huge issue and can’t believe the medical community hasn’t fought harder on this issue in the past few years.

        I’m really sorry it sounded like I was attacking you.  That wasn’t my intention at all.  My writing was unclear and I apologize for that.  It’s good that you’re sharing your story because people do need to be aware that tragic things like this are happening and changes need to be made.  I’m sure your mom would be proud.  Again, I’m so sorry for your loss.  I can’t even begin to imagine what you’re going through.

    • Sapphire Storm

      Wow, What a condescending and patronizing post you wrote here. Fortunately it is as easy to take apart as wet tissue paper. And I believe Ms Svenson did so. I wonder what your reflections are going to be on her “story” (which is really her mom’s and her, very real lives). What she says about your comments is absolutely true; to say “life is unfair” is a simplistic if not simpleminded reply showing an old time ignorance. Today, many of us are enlightened and devote ourselves to remedy healthy disparities and social injustice. I mean, come on, would you tell an escaped slave who is mourning that her mother could not leave with her: oh, sorry, life is unfair. Or would you focus your profound intellect (sarcasm intended) upon the humanist movement of abolition?

      So~ shall only well off people be able to have simple health treatments? Should people who are unaware of their “options” be left to die? We are ALL living on borrowed time; I find it incredibly rude and insulting to tell someone that her mother was living on “borrowed time”. Living with asthma is not synonymous with that statement! And free health care….does not mean people would value it less. Try using less cliches in your writing  and more critical thinking.

  • http://profile.yahoo.com/5K3LXDV4P4HQLTFLJ4EGJJBD7M Sarah Stone

     There is no perfect healthcare system and there never will be.  Anything that is made to be “free” loses value.  Plenty of people in Canada or the UK, for example, have complaints about their healthcare system.  It’s slow.  It’s inefficient.  It’s hard to get certain types of treatment.  People in the UK with enough money to pay do not use the NHK system.  That tells you something.

    • http://www.facebook.com/profile.php?id=100000194802325 Erika Svenson

      I do not recall stating that a perfect healthcare system does exist, nor do I recall stating that I wanted the US to copy any particular country’s system. I have talked to plenty of people in the UK who are fed up with the NHS, particularly as it relates to mental health care; I know many in Canada who complain about wait times, though that is more an issue of too little physicians than a flaw in the system; and so forth. That said, I have friends in both Canada and France, those who do not make enough to go outside the system, who state how thankful they are to have that as, if they were in the US, they would not. I am not asking for a perfect system. I *am* asking for one that is less broken that ours.

      • http://pulse.yahoo.com/_2LRZNHDZS6DU45WQ567LPQ7CMI ninguem

        You have a healthier approach to the problem than many experts. Given your tragedy, you have no reason to be objective, but you are anyway. This is to your credit. Your mother would have been proud.

        • http://www.facebook.com/profile.php?id=100000194802325 Erika Svenson

           ninguem,
          Thank you. Truly, from the bottom of my heart. Your comment meant the world and a moon to me.

          Erika

  • Dorothygreen

    Erika –People have testified before Congress about
    availability of insurance and medicines in the health care reform debate.   These have been instrumental in getting the
    Patient Protection and Affordable Care Act passed.  The major question now is can health care
    reform get past the crony capitalist speed bumps to ultimately be a Health Care
    System and one that works for the people. You seem quite savvy now about health
    care issues. Inside National Health Reform (McDonough) is about the history and
    current battle to get the new law.  Health care isn’t “free” anywhere.  It is a matter of how much is shared (through taxes) and how much is individual (and or employer based).  I do not believe that a person with asthma in any other rish country would not be able to get inhalers.  We can do better.

     

    Your specific quest, as I read it is: will health reform change
    the relationship of Big Pharma to politicians/FDA so people like your mom don’t
    have to worry about getting inhalers?

     

    It didn’t happen with Part D of Medicare (first a law was
    passed so Medicare had to pay full price – Free Lunch (Johnston) – chapters 21-23 deal with health
    care.  It wasn’t paid for and the real
    costs were not disclosed. So we all got stuck with a huge bill including
    seniors which is part of the debt issue. 
    Several politicians became Big Pharma Lobbyists right after Medicare D
    passed.  Many seniors still have to
    choose better medicines and food.  

     

    The US
    has been experiencing shortages of injectable generic drugs because of crazy
    laws.  No problem in other countries.  One can easily get brand names if you have
    the money.  Kids with Leukemia affected.  

     

    And I just checked out a web site regarding HFA
    inhalers.  There are a lot of angry
    people with asthma here because of the increased cost and inefficiency of the
    new inhalers.  Who wins here?  http://www.consumeraffairs.com/health/hfa_inhalers.html 

     

    I see the ads where a drug companies say they might pay for
    your drug if you cannot.  It’s insulting
    for anyone to have to do this in lieu of universal healthcare and affordable
    medicines.   

     

    Your screaming and actions will help – link up with others also
    want to speak out and can get the message to representatives. 

  • Sapphire Storm

    Erika~ I can’t put myself through reading all the comments on healthcare in the US. It is obvious our system is horribly horribly broken and that the individual *poor* human life is not valued. People can compare health systems and talk about drugs and co-pays. People *should* (in my opinion) be talking about how we can make *our* healthcare system better; how it can be for all people.
    When I first started reading your story I wondered if one of my nieces wrote it about their mother. She had asthma, but also liver disease and chronic alcoholism. I remember her constant worry about being able to get her inhalers through a free clinic (as she was poor and was raising two children having been abandoned by her husband). Unable to work, without transportation, she was unable to get treatment (even so she faced prejudice from healthcare providers) and eventually she suddenly and shockingly died. I could describe her as you describe your mother; the type of person she was.

    On the other side of it; if we must; to address finances~ imagine the costs her premature death has incurred.
    Social Security for daughters; therapy for those left behind; my mothers illnesses since then (certainly caused be the loss of her youngest daughter). I bet one hospital stay for my mother would have paid for health care for my sister.
    I am so sorry for your loss. And I agree with your points regardless of those who want to point out deficits in foreign healthcare systems. Because your intuitive implications, I think, are right on.
    Please take care.

    • http://www.facebook.com/profile.php?id=100000194802325 Erika Svenson

       Sapphire Storm,
      Thank you for sharing your own family’s story. They need to be told and heard. We must not stay silent.

      People need to begin to see the human behind welfare costs. When you fund services, you are not just throwing money away, you are helping to ensure that a life does not end, that a daughter or son does not end up motherless, a child without a teacher, a workplace without an employer and so on.

      You are also correct in stating that, even if one was to look at finances, not funding from the start can often be costly, as well; in many cases, it can be more costly. This point cannot be ignored. As, ultimately, the money will be paid. The choice is where you pay it out to.

      And I am sorry for your loss, as well. My heart and thoughts are with you.

  • Anonymous

    I work as a nurse case manager for a commercial insurance.
    We, as case managers and social workers at the company,work to  help members to find alternate ways of getting their meds if need be:  pharmacy assistance programs through a pharmaceutical company or prescription assistance programs, samples from doctors, etc.
    We offer support and education for people to maximize their access to health care.
    I am very sorry you were not aware of this.
    Maybe this might help others?

    • http://www.facebook.com/profile.php?id=100000194802325 Erika Svenson

      Each year, someone from the insurance company would stop by her employer and talk, both to the group and to each individual, about the plan, changes/increases, etc. She would voice her concerns. Though this person [I assume] was not a case manager and/or social worker, I can state that (s)he seemed to make no attempt to even extend sympathy, never-mind work with her. If your insurance company is different, then I express gratitude, if not a suspicious one*.

      *I do not make the assumption that all insurance companies or all employees at insurance companies are necessarily unconcerned with patients; however, I have heard of or seen far too many examples — initial claim denials on CTs for stroke patients, refusing to cover medication that a physician deemed necessary, refusing to pay for an ambulance to transport a patient who was deemed to be a danger to self and/or others from the ER to the psychiatric hospital, etc — to feel confident that, as a whole, insurance companies do have patients’ interest at heart.

  • http://twitter.com/UltraVerified UltraVerified

    I am so sorry. Horrible. 

    As a person who has asthma and is avoiding taking medication because of the cost, I know I’m playing roulette, too. Coal dust and air pollution have a major role in the epidemic of asthma which has overtaken the nation. It kills otherwise healthy 15 year olds too. http://www.bvonsports.com/2010/08/15/son-of-former-nfl-player-ickey-woods-dies-of-asthma-attack/ Health care is part of the problem but it’s also that we have made our environment into a toxic stew which endangers tens of millions of us

  • Anonymous

    I am just curious, as I don’t know exactly understand the new health care bill, but if that bill were in place would this woman have been equipped with all of the needed medications without taking food out of her kids mouths or is this type of scenerio not addressed, as pharmaceutical’s are very expensive and difficult for people with “health” insurance to afford.

    • http://www.facebook.com/profile.php?id=100000194802325 Erika Svenson

       I am not sure on this; however, I doubt it. My mother did have insurance and, at this moment in time, I do not recall an aspect of the healthcare bill that addresses the needs of the under-insured. I welcome any correction on this, however.

  • Anonymous

    That’s a good question about pharmaceuticals and ACA.   It may
    be that people will be able to get the medications they need more easily
    because there will be wider insurance and Medicaid coverage.  Also, insurance companies must spend 85% of
    their revenue on patient care and no more denial for pre-existing diseases.  Also, the “donut hole”, where seniors have to
    pick up the tab on medicines, in Medicare is closing. Medicare benefits cannot
    be cut. 

     

    However, laws that were created to protect and help Big
    Pharma maintain the strong hold are still in effect and as long as they are –
    somebody will have to pay the prices they demand.  If it is the insurance company then all people
    in the insurance pool, if through work, then employers and employees, if
    Medicare and Medicaid then it will be taxpayers.  

     

    There is a book Pharmocracy (William Fallon) that maintains Big
    Pharma is the root cause of our high health care costs.  I have just read a few pages here, read enough
    elsewhere to believe they are a very big part of it.   

     

    It will take strong political action to stop such practices
    that make Big Corp rich at the expense of public’s health. 

  • Anonymous

    Try high dose vitamin C.  Google – asthma orthomolecular. 

    Tried to give more detailed info earlier, but that comment has been censored by the gods here.

    • Anonymous

      Your post wasn’t censored, it’s below the fold.

      You can take off you tin-foil hat now.

      • Anonymous

        Thank you for illustrating my point.  Especially with a cliche.  

        • Anonymous

          And, this was not the post I referred to as censored.  One absolutely was.

  • http://www.facebook.com/profile.php?id=100000194802325 Erika Svenson

    verified,
    Thank you for your comment and for tweeting the article.

    I definitely agree that toxins in our environment are contributing to an increase in asthma deaths and that needs to be addressed. On the other hand, when my mom had her inhaler, her asthma was managed and she maintained a decent level of health.

    Erika

  • Mike Boodoo

    Hi Erika, I stumbled across this from SDN. I wanted to give you my deepest condolences; as a young college student myself I honestly can’t imagine losing a parent like that. Many kudos to you for writing about and bringing light to the fact that stories like this do happen.

    maryhirzel… really? A mother passed away and you’re here pushing quack therapies when you haven’t the slightest clue about basic physiology? 

    • Anonymous

       Mike, Thanks for your gracious message and your clairvoyant knowledge of what my education is. (PhD, molecular biology)

      Sending all the best wishes for the recovery of your intellectual independence and curiosity.  You’re far too young to be so gullible.

    • http://www.facebook.com/profile.php?id=100000194802325 Erika Svenson

       Thank you, Mike.

  • Anonymous

    So very sorry, Erika, for the loss of your mother and for the pain of encountering a very unhappy truth.  I am a hospital social worker and trying to find help for nice folks like your mother is nearly impossible for the reasons you name (too wealthy – right – for state assistance, too poor to afford the co-pays).  Treatments and medications for chronic conditions such as asthma or insulin-dependent diabetes just don’t make it onto the chain stores’ $4 Rx programs and the assistance programs funded by the pharmaceutical companies rarely apply to people who are neither destitute nor uninsured.  Often, when a person does qualify, the time required to process the application far exceeds the hospital stay.  I am forced to hand the follow-through to either the patient or his/her Primary Care Provider (PCP), assuming there is one and hope for the best.

    I have met your mother – symbolically of course – many times and I try very hard to get her needs met but it is frustrating as it is often futile.  I don’t know that that the system has promised anything to anyone: Thus the on-going, never-ending debate about a “health care system” which is broken in more places than I can name here.  And I am frustrated that no one seems to understand just how broken it is until they stumble and fall through the cracks.  As you watched your mother do.

    From your description, I suspect your mother would have been a pleasure to have as a patient and I would have been more than happy to do everything I know to help her.  I also suspect that she would have followed her medical instructions to the best of her ability.  I bet she would even have made an effort to pay her part of her hospital bill.  And, frankly, that’s more than I can say for a lot of people I meet.  If she was uninsured and injecting methamphetamine into her flesh, sooner or later she would get a painful abscess which we (the hospital) would treat with repeated surgeries, special equipment, an extended hospital stay, weeks of free medications and possibly even temporary housing and transportation to appointments. In return, we get a tax write-off from the government and absolutely no gratitude from the patient.  For me, this deepens the tragedy of your mother’s death.

    Your mother is the reason I keep doing what I do and I thank you most emphatically for reminding me of that.  And for helping to tell this painful truth.  God bless. 

  • http://www.facebook.com/semifamousartist Diana Whalen Long

    The saddest thing about this is that is not an uncommon story.  

    Having worked in a hospital emergency room for twenty years, I know first hand the plight of the working poor when it comes to medical care.  Many families have access to medical care ONLY through the E.R.  These working poor, do not qualify for medicare or medicaid.  They either are not offered insurance by their employer or the cost is so high they would need to give up eating and/or living indoors to afford it.  When I think of the heartless and greedy insurance companies and their lackey politicians, looking down their noses, while preaching “personal responsibility,”  I myself become physically ill.  Oh that they would have to live in what is the “real world” for millions, for just a few months!  Yes, this makes me angry.  Now, many emergency rooms have begun “triaging-out” what they consider to be non-emergent patients.  In the past, they were afraid to do this because it might mean the loss of their Medicare and Medicaid funding. It would seem that they have found some loop-hole to avoid this.  I can promise you, this will only serve to limit even more severely, the access that the working poor have to any sort of health care. Something must be done!

  • Gloria Serido

    What a tragic and unnecessary end to such a valuable life.  I can’t express in words how sad I feel for you and her.  It’s unbelievable that in this country, vital care cannot be given to someone who obviously needs it and is doing everything in her power to remain independent and not “live off the fat of the land” while so many undeservedly get just about free everything.  My heart goes out to you.

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