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It is with some despair that I watch the goings-on in the health care reform debate. I truly believe that this historical period is not only our best shot at real reform, but most likely our only shot, and it is enraging to watch the influence of the health insurance lobby, physician's lobby (AMA) and other powerful special interest groups frame the debate. Our current system of care amounts to passive eugenics, purposely weeding out the sick and allowing them to suffer and face untimely death because they are a 'drain' on society--or more accurately, a drain on health insurers bottom line. Isn't that exactly the same rationale eugenicists have used for decades to support their vile policies?  

Open Letter to Tom Daschle:

This morning I took a call from a patient who is a member of the organization I work for. She has a 7-year-old son who is rapidly losing lung function and is heading for transplant if this disease progression can not be managed. Her physician ordered an inhaled drug, Pulmozyme, to help him get rid of excess secretions in his lungs and hopefully cut down on the nasty infections that are scarring his airways. Pulmozyme is a patent-protected drug with FDA approval to market. However, the bulk of the testing done on Pulmozyme was done in cystic fibrosis and the market approval was for that condition only. Because the evidence for efficacy of Pulmozyme only exists in cystic fibrosis, insurance companies often deny this drug to individuals with similar need, but a different diagnosis. The prescribed dose of Pulmozyme for this child costs $2,100 each month. Even with insurance coverage, the co-pay for Pulmozyme for this family would run $300 to $500 per month. Pulmozyme is one of seven medications this child takes and some of them are even more expensive. He does not qualify for Medicaid because he is not yet "sick enough." What exactly do you propose as a non-public option for people in this situation? They simply can't afford the medication, so their 'option' is to watch their son get sicker and finally succumb to symptoms that are treatable.

This is the reality on the ground. Over-priced drugs and therapies, niggling rules imposed by the insurance company to avoid having to pay for over-priced drugs and therapies and a dismissive attitude by society that assumes having insurance actually means you can afford health care. If this is the nightmare faced by those with insurance, imagine what is happening to those of us without.  

So, congratulations. By your comments endorsing the position of the Republicans opposed to a public option, you have just endorsed the continued misery of millions of vulnerable Americans who don’t nicely fit the actuarial models of the insurance industry.  As someone who currently can't get insured at any price because of a well-managed chronic illness, it disgusts me that--once again--the very people who created the problem are going to benefit most from the solution. I am tired of patiently waiting while people with no stake in the game--elected officials and others who are both wealthy and well-insured--debate whether I am deserving of health care at all and watch families fall into financial ruin as they try to secure care for their children. To allow the same industries that feel no remorse about decisions to deny necessary health care to certain people based on actuarial models--literally life and death decisions distilled to a simple calculus about impact on the bottom line-- more of a voice in this debate than American citizens is an outrage. As far as I’m concerned, you and others who oppose a public option are guilty of passive eugenics, sitting by while private industries decide which American citizen is entitled to care, knowing full well the current private insurance model leads to preventable illness and untimely death.  To assume these industries will suddenly become good actors, more concerned about American health and prosperity than their own greedy bottom line, is ridiculous.  To expect them to do so after watching the government cower under pressure from their lobbyists is obscene

It is clear that many people involved in this debate have no actual idea what is going on at the grassroots level. I have heard talking heads, including elected officials who should know better, suggest that the uninsured and underinsured ‘choose’ not to have coverage. That may be the case in a very small minority, but the vast majority of us either can’t get insurance due to a pre-existing condition or can’t afford the outrageous premiums. Under the current system, not only are you penalized for medical conditions over which you have no control, but you are doubly penalized for attempting to responsibly manage your health with your medical records serving as the basis for increased premiums or outright denials of coverage. It is legalized discrimination. To suggest that the average American, who these days is having trouble just holding on to his/her home, should find a spare $1,200 - $1,500 per month lying around for premiums, plus be able to foot the bill for co-pays, is just plain ignorant. The ‘option’ to pay for insurance (if you are lucky enough to be deemed ‘insurable’ at all) that costs 1/3 to 1/2 or more of your total monthly income is no option; it’s a recipe for financial disaster.  Haven’t we had enough of that already?

Your suggested alternative, shifting the burden off the federal government and instead onto state and local governments that are already broke and have far fewer resources, only ensures that the goal of covering all American’s will fail. You must surely know this, so this plan is exposed for what it really is, a way to sustain the status quo with private industry actually calling the shots, while appearing to make an effort at reform. This is an insult to those of desperate for real reform.

Our elected leaders managed to overcome their differences and find a 'public option' for banks and other industries. It is about time they find their collective will to do the same for the American people.  

Michele Manion
Phoenix, Arizona

Originally posted to MManion on Sat Jun 20, 2009 at 08:50 AM PDT.

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Comment Preferences

  •  as i sit, uninsured, with mystery ailment... (1+ / 0-)
    Recommended by:

    that has rendered my left arm useless, i have to agree. if i didn't have relatives with money that can help me, I'd be totally fucked.

    Idea:No Blood 4 Oil Action:I use Biodiesel site blog

    by KumarP on Sat Jun 20, 2009 at 08:56:14 AM PDT

  •  Powerful diary and letter. (2+ / 0-)
    Recommended by:
    JG in MD, siduri

    And "passive eugenics" is exactly what it is.  Great term you've come up with.

    It galls me to no end to see the trillions given away to bankers to bail them out, yet health care for the people must be held to strict accounting to pay for itself.

    The banks aren't paying for themselves; hell, they're not even solvent, and STLL they get billions in gifts, and their bonuses.

  •  I'm disinclined to believe that this is our only (2+ / 0-)
    Recommended by:
    SarahLee, JG in MD

    shot.  This congress clearly sucks when it comes to real reform.  If we fail this time, the people will get the job done, and the private insurers will regret not being more cooperative this time since they will become obsolete under the single-payer system that will be implemented by the people, most likely starting in one state and spreading state by state.

    •  Hope You Are Right (3+ / 0-)
      Recommended by:
      SarahLee, tegrat, JG in MD

      I sincerely hope you are right, but I have been waiting 20 years and have watched every opportunity for change be squandered. In past years, I haven't even allowed myself to be optimistic--for good reason. Finally, I thought we might have a shot, but as each supposed proponent of reform buckles to the right (even Chris Dodd posted at Huffpo today that they simply don't have the votes for a public option) it feels less and less likely. Cynic that I am, I think Obama is right. Health care costs are going to bankrupt us. But we learn hard, as a country, and will probably have to get to the point of total collapse and abject despair before meaningful change takes place. I will keep my fingers crossed for your scenario instead!    

  •  Does anyone know the wholesale price of drugs? (0+ / 0-)

    Not what they cost to make but what most phramacies buy them for?

    •  Drug Prices (0+ / 0-)

      Not sure about that, but it costs an astounding $800,000,000 for an average drug to satisfy all the research and reporting requirements for FDA approval.  FDA approves drugs for marketing, but does absolutely nothing to control prices--either front end or to the consumer--in fact, making their 'hands off' irresponsible approach to drug development costs a centerpiece of their policy.  Yet another system badly in need of reform.  

      •  I really question those numbers. Drug (0+ / 0-)

        research is handled in Universities and by the NIH(with Phrama's support).  Clinical trials are expensive but $800 MM sounds a bit over inflated.  It sounds like some bad accounting to justify the prices their charge.

        •  Drug prices (0+ / 0-)

          Actually came directly from the FDA which has little reason to inflate numbers.  It was in a presentation I attended as a clinical research coordinator that showed an entire warehouse of documentation for one drug application. I think it was for new drugs--not an existing compound used for a new application, but the unbelievable price tag is actually true--not a big pharma justification for their prices.

        •  If you question them--do some research (0+ / 0-)

          Rather than assuming they are wrong based on a gut feeling, I encourage you to do some research.  It is not helpful to deny reality.  In fact, we need to know exactly what we are facing in the health care reform battle to be effective advocates.  Don't assume outrageous is wrong when it comes to medical costs.  Too often, it is sadly the reality.  

        •  How Much of This Cost is Taxpayer Supported? (0+ / 0-)

          I think this is a valid question.  Yes, the cost of new drug development is outrageous, but much of the cost for early research is footed by the NIH--essentially by us as taxpayers.  We pay for the bulk of the development cost, but then are denied access to the drugs by our private insurers based on pharma's contention that development costs justify the exorbitant prices and the refusal of the NIH or FDA to set price controls as a condition of funding research.  The whole system is rigged to cost consumers and profit drug companies. That is the point.  

          •  I am sure they have documentation but I know that (0+ / 0-)

            unless you are able to dig into those numbers, you don't know how they were charged.  Think of it like the Pentagon budget...they have documentation as well but how many of those costs are actual or super inflated by the people submitting the numbers.  Unless I don't understand how it works, the FDA has to relie on the veracity of the information given to them by the drug companies.  $800 MM for one drug is an incredible amount of money.  That represents about 6% of our annual GDP for the development of one drug and there are literally thousands of drugs.  I say again, something here does not add up.

            •  Could Well be Cost Inflation (0+ / 0-)

              and if this is a concern for you, I would welcome your due diligence on the topic. In fact, that figure is from 2003 and the cost is substantially higher now. I have to assume you have not looked up any information, however, if you still doubt the number, as it is what is published by public, private and govt agencies. I don't know what all is encompassed in the figure, I am simply sharing the conventional wisdom, as someone who actually works in the research industry, and can tell you it is accepted as fact both by industry and by the NIH. Frankly, I'm not interested in spending too much time debating it, as that was not the main point of my post and it is not my opinion or my figure that I can change if I wish to. If it seems wrong to you, you should debate that with the folks publishing it at the links I've already provided. You're right--it doesn't sound right. It sounds obscene.  That doesn't mean it isn't true.  

      •  Possibly $800,000 IIRC (0+ / 0-)

        We are all Jose Padilla.

        by JG in MD on Sat Jun 20, 2009 at 02:58:37 PM PDT

        [ Parent ]

        •  Drug Costs--Yes, I Meant $800,000,000 (0+ / 0-)

          This is a major problem.  People simply won't believe the outrageous costs for drug and therapy development and $800,000,000 is actually conservative in today's dollars.  Not wanting to accept these numbers doesn't mean that aren't accurate.  Here are the industry estimates, as backed up by the FDA's own documentation and data from peer-reviewed journals.  Don't shoot me, people--I'm just the messenger. You can and should do the research yourselves (there is plenty of info out there from credible sources on the Internet) because it would help inform the health care reform debate. It is more than just who is paying, we need to look closely at what we are paying for and why. If you are outraged, ask the FDA why they support the current obscene system:

    •  In the U.S., Prices Are Set Free from Cost (0+ / 0-)

      Those countries that regulate the cost of pharmaceuticals limit PHRmA profits. The U.S. makes up the difference.

      We're charged those prices specifically because the Congress has made sure we don't limit prices, like those other first-world countries do. Gosh, says Big PHRmA, don't they realize we have to have huge enormous profits no matter what? After all, we have to keep our marketing and lobbying budgets astronomical in order to make sure the U.S. doesn't limit prices.

      We are all Jose Padilla.

      by JG in MD on Sat Jun 20, 2009 at 02:25:53 PM PDT

      [ Parent ]

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