Fight for healthcare

The above video, made by Chelle Denise (@purplegimp on twitter) is heartbreaking. I challenge you to watch it all the way through without crying. She tells us of the realities of living and dying in the US health care system.

A couple of weeks ago there was a debate held by CNN and the Tea Party for Republican party presidential candidates. Ron Paul was asked if a person without health insurance should be left to die if he needed intensive care. He replied “That’s what freedom is all about, taking your own risks. This whole idea that you have to take care of everybody…” That reply received rapturous applause from the audience. The audience were actually applauding the idea of leaving someone to die. (See the video here.)

Chelle desperately needs reconstructive surgery and bone grafts to remove infection caused by Sjorgen’s disease in her jaw and keep her alive. She cannot take the drugs that would treat her lupus and rheumatoid arthritus until having the surgery, as the other drugs would destroy her immune system and allow the bone infection to kill her. And yet, her insurance provider have refused to cover her surgery.

Just think about that. She HAS health insurance, but this company have made a decision to deny her vital surgery to fix something which threatens her life.

In her video Chelle also talked about her friend Jennifer who died recently from cancer. Jennifer was taking an expensive cocktail of medicines to control her pain, paid for by social security disability benefits. When she was admitted to a hospice they did not want to pay for the expensive pain medication upfront even though it would be reimbursed to them and so they switched her from drugs worth $500 a day to methadone which costs merely $8 a time. Methadone (Synthetic heroin) brings with it a range of horrible side effects and it left Jennifer exhausted by causing her to vomit continuously for several days. Even though the methadone was stopped and the previous medications reinstated as soon as the switch was discovered, it was too much for her and she died soon after.

These two stories are a clear example of what happens when healthcare and health insurance are run for profit. Insurance companies don’t care if someone will die because of their choices. All they care about is keeping the costs down and getting out of making payments. They look for loopholes and tiny mistakes just so they can squeeze a bit more profit from their customers. And even when they do pay up, you see choices like that made for Jennifer, where a business operating medical facilities can decide that they don’t like the negative effect on their cash flow of paying for proper medicines that prolong life, even when they would get it back. It’s not just that they are stingy with their money to maximise profits, they won’t even pay to save life now and get the money back later.

Another hearbreaking story in Chelle’s video is that of Steph. (@Steph_in_NC on twitter) Steph is seriously ill with Lupus and Celiac disease. She should not be working, but she does work even though it is hurting her because her family need the income. In theory she could stop work and claim social security benefits but in the US it takes between one and a half and three years to process a permanent disability claim. Steph and her family might be homeless and starving before support is given. I don’t know the reasons for that, but it is indicative of a country where care for each other is horribly absent.

This lack of care and support is obvious when you look at the lengths that Republican politicians have gone to to oppose president Obama’s health care reforms. The idea of everyone contributing to health care insurance and everyone benefiting equally seems to terrify  the rich and those who want to be rich. After all, if money can’t buy you some inequality, what is the point of it? I wonder if those Tea Party supporters that applauded the death of those without health insurance would also cheer the death of people who do have cover? I suspect that some are just stupid – supporting the Tea Party as a poor person in the vague hope of becoming a rich person who will benefit from that has to indicate a lack of thinking – but perhaps the richer supporters are happy for those with health insurance to die anyway. It means more money for the shareholders of those health insurance companies.

The ideas of the Republicans and the Tea Party might fit the ideals of Ayn Rand’s objectivism, so influential on US politics in the last few decades, but they are inhuman and cruel. (And also completely out of step with the claims of most supporters of those two groups to be Christians. The bible is pretty big on social justice and caring, but they obviously read a different bible.) The state of health and welfare in the US is shocking and outrageous. Health care and support for sick and disabled people and those without employment is well within the means of the nation as a whole. Instead the wealth, and therefore healthcare, is hoarded by the rich just so that they can feel better than everyone else as they watch the poor die in the street.

This must not be allowed to continue in America, or in any country. This is why I – we – fight so hard in the UK to prevent the Tories from opening up the National Health Service to competition from private companies. This is why we fight to block the government’s efforts to cut the income of sick and disabled people so ruthlessly. For everyone’s sake we must fight this abuse, in the UK, the US, and all over the world.

 

 

Author: Latentexistence

The world is broken and I can't fix it because I am broken. I can, however, rant about it all and this is where I do that when I can get my thoughts together. Most of the time you'll find my words on Twitter rather than here though. I sometimes write for Where's The Benefit too.

9 thoughts on “Fight for healthcare”

  1. Here is a transcript of the video :

    Hey everybody, this is Chelle also known as the
    purplegimp, and this is episode 8 of my disability web video series. I’m
    filming this episode for healthcentral.com’s “This is Me- your health journey”,
    um contest, and the winner gets 200 dollars to donate to the charity of their
    choice, so I thank them for their interest and their support. Um. It’s been a
    while since I’ve been here. A lot has happened in the last month, month and a
    half since I filmed my last episode.

     

    Um. As many of you know, uh, I struggle with, uh, Sjogren’s
    disease, lupus and rheumatoid arthritis. I also have permanent endometriosis,
    severe bowel adhesions. The Sjogren’s disease has caused extensive damage to my
    mouth, my teeth and my upper and lower jaw because it attacks the moisture
    producing glands in your body – in my case, the saliva glands in my mouth – and
    without moisture your teeth, and your jaw cannot live, and so about 4 years ago
    the Sjogren’s disease started snapping my teeth like glass, crumbling them at
    the slightest touch. I’m now down to about 15 teeth, and (unknown) bone marrow
    infections in my upper and lower jaw because of the extensive deterioration in
    infection. Um, in most cases you would think the logical thing to do would be
    to go in and have the necessary surgery needed to correct the situation.
    However, my medical insurance despite letters from 4 doctors and extensive medical
    records showing the severe damage to my mouth is caused by the Sjogren’s
    disease and the bone marrow infections are threatening my life because they are
    failing to respond to antibiotics after so much time um, my insurance company,
    uh, as of Friday has refused my claim to get reconstructive surgery and bone
    grafts.

     
     

    Um, I’ve never shared this but with only but a small
    handful of people close to me but the last year or so it’s been so bad that I’ve
    actually had to glue my teeth back in just to be able to eat and  to try and not look like such a freak. I wake
    up and I find pieces of my tooth and my jawbone underneath them in my bed and
    on my pillow. The pain is constant.

     

    And at the same time that this is going on, my lupus and
    rheumatoid arthritis has begun to threaten the use of my arms and my legs
    because of the swelling to the soft tissue and the muscle underneath. And so we’ve
    spent the last 6 weeks waiting for an answer from my insurance company only to
    be told that I guess my life doesn’t matter. Or maybe it’s the fact that I’m on
    permanent disability and there’s no cure for the disease that I have, so why
    invest the 80-100 thousand dollars that it’s going to cost for me to have
    reconstructive surgeries and bone grafts.

     

    I don’t know what the logic is, I really don’t know
    anything anymore, but I’m unable to seek treatment for my lupus and RA because
    the biological IV infusion drug that I need to take to slow down the severe
    advancement of the diseases destroys my immune system, since my immune system
    is what’s attacking me and doing so would allow the severe infections in my jaw
    and bone marrow to run rampant, um, without any defence at all and I’ll die. So
    we’ve been holding on to hope that our insurance company who is already
    treating my Sjogren’s disease in other ways would see how important and
    necessary the surgery is so I can be around to see my kids grow up. [Chelle chokes
    up and has tears in her eyes]

     

    I’m not really sure what our next move is. I don’t even
    know if there is one. And the things that I see happening around me make me
    sad, and make me sick. Our healthcare system, especially in the private sector
    has sunk to all-time lows. I have another dear friend named Stephanie, who
    suffers from severe lupus and celiacs (sic) disease. And I watch Stephanie work
    herself down to 89 pounds, killing herself driving back and forth to work every
    day when she has no business doing so, when she needs to be home resting and
    trying to heal so that she too can be around to see her lovely young children
    grow up. But she can’t afford to go on disability, she can’t afford to take
    care of her health.

     

    Let’s think about that for a second. She can’t afford to
    take care of her health. That’s the situation that we have put millions and
    millions of people in. Because in taking disability her income stops, she runs the
    risk of them losing their home, being unable to pay bills, buy school clothes,
    put food on the table. And so she’s been forced to choose between providing for
    her family now, and being there for her family in the future. And nobody should
    be forced to make that choice.

     

    And a lot of you will say “well why doesn’t she quit
    working, and file for permanent disability through social security?” And that’s
    all well and good, but how many of you know that the disability application
    process takes anywhere from 1.5 to 2 to 3 years from start to finish? I was
    blessed when I applied for disability to have a partner that was still working
    and making just enough money, that without my income we were able to squeak by.
    But a lot of people don’t have a second income in their family, or the one that
    they do have is still not enough with the cost of living being as high as it is
    these days to be able to afford to languish for 2-3 years while disability
    decides if you’re actually disabled or not. And so, great women like Steph are
    forced to continue to push themselves into the grave because there’s no support
    there when they need it the most. 

     

    Many of you watching know that my dearest friend in the
    world, Jennifer, was fighting a long and hard battle with pancreatic and kidney
    cancer. In the middle of July the decision was made to put her into hospice to
    keep her comfortable and allow her to transition into the next life as painfree
    as possible surrounded by her family and friends in a comfortable homelike
    setting, which is what hospice is supposed to be all about.

     

    We put Jennifer in the hospice and within a week or so of
    her admission the staff and the doctors at the hospice care system decided to
    remove every single one of Jennifer’s pain medications that were prescribed by
    her pain management doctor and was a working regimen that had been in place a
    couple of years and provided Jennifer with enormous relief from the
    excruciating pain that she dealt with every second of the day from the cancer.
    All her medications were removed, and they were replaced with the synthetic
    heroin, methadone. Now many of you don’t know that methadone is used to treat
    chronic pain. Widespread, across America, I myself spent some of the sickest
    years of my life on methadone and know firsthand how poisonous this medication
    is. And so at the end of her life, when she should have been kept the most comfortable,
    when the plan was in place and working well to do so they removed her medication,
    put her on methadone and then sat idly by while she vomited the last of her strength
    away from the severe side effects of the methadone.

     

    I’ll never forgive myself. I had a flare up during that
    time and for 2 days I couldn’t walk, and so I didn’t find out right away what
    they had done to her. And as soon as I did I talked with her mother, and we had
    then stop the methadone right away and we insisted that all of her other drugs
    were put back in place, but it was too late. She had vomited the last little
    bit of her strength away. Unable to talk through the heaving for 5 days all she
    could do was just lay there and vomit. And let us clear it up. She slipped into
    a coma almost as soon as she was removed from the methadone and without ever
    waking up, without ever being able to say goodbye to her daughter, to her
    mother, to all of us that loved her, she died. Not with dignity, not painfree,
    not even remotely resembling comfort.

     

    Not long after that I went to see my pain management
    specialist, who I trust and respect very much, and I related the story as I’ve
    just related it to you. About how Jennifer’s pain meds were managed and how
    methadone was introduced at the end of her life, and how everything that was
    working was removed. And I asked him why they would do this to Jennifer in her
    most dire time of need. And he looked sad, and said just one word. Cost. [tears
    up] Jennifer was on over 500 dollars a day worth of pain management and support
    medications. Which had been paid for by our federal government under her
    disability and social security and would have continued to be paid for up until
    her death. However, because the cost is reimbursed to the hospice, methadone is
    only 8 dollars a pill. And so it was much cheaper for them to take away her
    comfort, to take away the end of her life [cries] to save a few dollars up
    front. 8 dollars.

     

    That’s what your mum’s life is worth now in America.  8 dollars. I ask any of you watching,
    especially anyone in the healthcare industry, if you could put a dollar value
    on your mother’s, life, your father’s life, your sister, your brother, your
    husband, your wife. How many dollars are their lives worth? And how, how’s this
    been allowed to happen? We all deserve to live, we all deserve to be treated
    with compassion and respect. Being dis-abled doesn’t mean that we’re any less
    worthy or any less human than a healthy person.

     

     [pause]

     

    Our contributions to the world may be measured in a
    different way, but they are no less of value. Jennifer deserved better, Stephanie
    deserves better, I deserve better. And so does the 10% of the world’s
    population that’s disabled. Things have to change. Be part of that change in
    some way, no matter how small. Please, be part of that change. For Jennifer.

     

    As usual if you’re out there, if you’re watching this,
    you’re not alone. Thank you all for being here. [waves]. Bye.

    [ends]

     

    [ends]

  2. You’re a good friend Steven. It means much to me that you would share our stories with your readers. A cautionary tale indeed for the many of you fighting so hard to keep this same travesty from occurring in the U.K. It’s hard to fathom that even WITH medical benefits, millions of people are still being treated with LESS compassion than most folks pets by the American Healthcare System! It’s all about the bottom line, and saving a buck, regardless of the trail of bodies that callous approach to healing leaves in its wake. What frustrates me the most, is that the Industry as a whole fails to see that investing a bit more money into quality healthcare when required at onset, potentially saves MANY tens of thousands of dollars in the future!! Yet while they continue to ‘cut corners’ with peoples lives, the real life casualties of their apathy continue to mount. It’s time for us as a Global Community to stand united as one voice, and say; “NO MORE!” “We deserve and demand BETTER!” Being disabled is hard enough without being marginalized, neglected and abandoned. Thanks for being, surviving and fighting. *gentle hugs for all* Be Well.

  3. Of course, in the US system, the truly wealthy don’t care how bad health insurance is for even those that have it – they have the money to pay for things outright, even at the grossly inflated prices charged when the provision of healthcare as well as the insurance are for-profit industries. Any system designed principally by the insanely wealthy for their own benefit will outright crap on the vast majority of people when they come to need what that system provides. It only persists in healthcare because most people, most of the time, either don’t realise how bad it is for those that need it, or don’t imagine they themselves will ever need it.

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