Archive for the 'health care policy & reform' Category


Expected this of Facebook, but PNAS? What Were You Thinking?

Retraction countdown commences now.  It’s pretty clear that Facebook, Cornell and PNAS violated the spirit of human subject research laws, if not the letter of those laws (may have done that, as well).

If we start to accept that clicking ‘yes’ to a privacy policy equals adequately informed consent, we might as well scrap the whole system designed to prevent the research atrocities of the past. Do you feel your physician should be able to replace your standard medication with an experimental drug as part of a study that you are not aware you are participating in and never consented to because you signed his boilerplate privacy policy? Of course not. He/she would end up losing their license or in prison for this sort of conduct. Social science research IS human subject research and it requires the same level of concern for the rights of participants.  I’m not angry about the nature of the study. I am angry that these researchers felt so comfortable manipulating people without their knowledge or consent. It is a slippery slope and minimizing it is not helpful.

People clearly were harmed by this study. In fact, that was actually one of the study goals–see if it was possible to make them feel bad by artificially manipulating their exposure to negative comments– and ultimate ‘findings.’ That alone should have prompted better ethical oversight. This is not the same as retrospectively data mining de-identified static patient records, regardless of whatever rationale Cornell uses. This was real time emotional manipulation of actual people who had no idea it was going on. Bad form all around and I hope OHRP gets involved.


(AB)Use of Statins the Next Big Pharma Scandal?

No one can say for sure and that is a scandal in itself.

For anyone who has been paying attention to the growing controversy related to the ever-expanding prescribing guidelines for statins, Ben Goldacre makes some very good points in this post.

Worth noting that none of this would be an issue if we mandated trial transparency. The fact that bad data can be hidden and good data cherry-picked to artificially manipulate prescribing decisions is a big problem that results in lack of confidence across the board.


Palin: “Let the Free Market Fix Health Care”

Why is she so grumpy? At least SHE has health insurance.

After all, that’s worked so well up to this point. Wonder if she knows that the health insurance industry has an exemption from the Sherman Anti-Trust Act, so that they are not currently and never have operated in a “traditionally free market way of doing business in our economy?” They enjoy special rules that allow them to create monopolies and price-fix legally.  The exemption was supposed to expire in 1947, but effective lobbying has kept it in place. How else can you explain why the sole private insurer allowed to sell insurance in much of of the state of Michigan is able to propose a 56% rate hike?  In what other ‘traditional market-based’ economy would a company be able to pull that crap and get away with it?  They can do it because there are no other insurance options in much of Michigan (and even if there were, premium pricing would be legally fixed to benefit the insurer) so the population has no other choice–pay or be without insurance. Michigan is just the most outrageous example.  It is happening all over and the Republicans see no problem with this. This is no ‘invisible free hand of the market,’ this is straight up, in your face, very visible middle finger of the market aimed directly at the American people


“Invade a Hospital”


Dear United States Senate, Enclosed Please Find My Medical Bills

I believe they belong to you. A petition for relief via the Dorgan Amendment to Senator Al Franken:

December 16, 2009

Signed, Sealed, Delivered--They're Yours!

Dear Senator Franken,

I am writing to you about the health reform legislation efforts currently under consideration in the Senate. Sadly, it appears my lack of faith in our elected representatives, yourself and Senator Klobuchar excepted, to truly address the needs of the people has been fully justified by what can only be truly called the “healthcare non-reform bill” being bandied about as some sort of ‘compromise.’ I guess what this means that those of us foolish enough to have been born with a chronic disease or to have lost employer-based coverage in the worst recession in American history will have to fight for any scrap of consideration we can muster. Besides the obvious amorality of a system of healthcare coverage that legally supports discrimination against the sick and poor to benefit corporate profits, I believe this is also a legal issue. I do not believe our Constitution supports discrimination and it most certainly does not support what is nothing more than passive eugenics. To suggest that those who suffer from underlying health conditions are not worth the expense to society (actually to corporate bottom lines) to care for them and therefore can be legitimately ‘culled’ from the herd through onerous insurance practices goes beyond obscene to completely amoral. That this practice continues with the majority support of the United States Congress is shameful. This point needs to be made crystal clear to those of you involved in the debate.  Without some sort of public option or real reform of health insurance industry practices, there are millions of us who have NO option for healthcare coverage.  It is not a matter of choice.  We are pariahs in a system that caters to arbitrary private insurance policies designed to raise profits and only provides a constantly shrinking safety net for the most destitute in our society.  We can provide trillions in bailouts for corporations and for ill-conceived wars, but suggest that there are Americans who need health care coverage and we become outraged by the expense. It is a form of cultural insanity that is being enabled by Congress. While there may be reasons, political and otherwise, for Congress’s decision to side with private insurers, there is no excuse for it.

Now that I have shared my absolute disgust with how this entire process has been handled, let me beg for one scrap of consideration. I know you will do your best and ask for nothing more than that. I work for a patient organization based in Minnesota called the PCD (Primary Ciliary Dyskinesia) Foundation. The PCD Foundation works closely with the National Organization for Rare Disorders (NORD), the Genetic Alliance (GA) and other patient advocacy groups representing rare diseases.  We in the rare diseases community are used to being overlooked and essentially invisible in the grand scheme of government funding (for instance, not one penny of the 10 billion dollar NIH stimulus funding was directed to the Office of Rare Diseases Research, the only government agency specifically taxed with representing the interests of the more than 30 million Americans who have one of more than 6,000 identified rare diseases).  The reality for people with rare diseases, which are often genetic and frequently chronic in nature, is that they face a lifetime of illness and of extraordinary medical bills.  People with PCD, a disease similar to cystic fibrosis, are born with lung disease and get progressively sicker for decades until they either need a lung transplant or succumb to respiratory failure.  For those who can get insurance, lifetime caps are a disaster, often negatively affecting treatment decisions and resulting in care that is less aggressive than it should be and causing tremendous fear and anxiety in patients who should be concentrating on staying healthy rather than worrying about reaching lifetime limits.  I am asking you to join Senator Byron Dorgan in passing an amendment to do away with lifetime insurance caps. Surely America’s sick deserve at least this little crumb of hope after being so mercilessly denied any real chance of relief in current reform efforts.

It would be hard for me to adequately express my absolute devastation at how American citizens have once again been abandoned in the healthcare debate.  I watch our elected officials and many of my fellow citizens fight to keep me and millions of others like me uninsured and I have to wonder when and how we lost our way?  How can we purport to be a shining beacon of “life, liberty and the pursuit of happiness” when we willing allow our own people to be subjected to a life of unnecessary pain, illness and untimely death?   I truly hope my fellow citizens understand that they are just one illness or pink slip away from suffering the fate they are so cavalierly inflicting on others.

History is going to excoriate us for our lack of values and mixed up priorities—our western allies already do.  This is another shameful and embarrassing episode in American corporate greed. As for myself, I’ve given up.  I suspect that this round of reform talks was our last chance and I clearly just have to accept the fact that I am uninsurable—period.  I don’t even have a serious chronic condition, just well-controlled hypertension. If that is enough to make me a pariah, imagine what is happening to people with conditions like PCD?  I hope and pray that I don’t get really sick, but if I do I will be presenting my bills to Congress.  Congress has had multiple chances to fix this mess and has chosen not to. They have earned both my contempt and my medical bills.


Mickey’s Musings


Health Care Reform: No Public Option = Passive Eugenics, an Open Letter to Tom Daschle

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?  Tom Daschle narrowly avoided nomination as Secretary of Health and Human Services and I think we should count our blessings. His recent comments support opponents of a public option for health care reform expose his true motivation and a health industry lobbyist and demonstrate the conflict of interest that is poisoning the opportunity for real reform.

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.

Mickey Musing

Phoenix, Arizona

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Dear Governor Palin…

October 25, 2008


Dear Governor Palin,

I applaud your interest and stated commitment to improving the quality and availability of care for children with special needs. As the mother of a now grown special needs child and the founder and director of an organization dedicated to research on her disorder, I know firsthand the challenges families of these children face. Unlike trisomy 21 (Down syndrome), my daughter’s disorder, a rare genetic disease called primary ciliary dyskinesia (PCD), does not enjoy broad public awareness, which makes finding  health services and funding for research even more difficult.

Last week in a policy speech you indicated that certain research expenditures were wasteful and foolish. The specific example you used was fruit fly research. Because I want to believe you are sincere in your desire to help those with special needs, I was dismayed to hear your perspective on basic science research. When my daughter was diagnosed in 1991, we were told that her disorder was so rare there would never be genetic research done on it.  Finding a patient group large enough for human genetic studies would most likely be an insurmountable challenge.  But people were working on PCD genetics–albeit indirectly. Scientists were unraveling the genome of a single-celled algae called Chlamydomonas. This organism was simple and plentiful and scientists could grow pools full of it for research. In 2002, the first PCD gene was discovered in an ortholog (human equivalent) of Chlamydomonas. Since then, several more have been identified, resulting in the first-ever genetic test for PCD and the promise of genetic therapies for this incurable condition in the future. It can not be overstated that these advances are the direct result of research on, quite literally, pond scum. It was heartbreaking to hear a candidate for national office make a joke of these efforts simply to score political points and I was saddened beyond measure for the families relying on basic science research in fruit flies that you chose to single them out for this unwarranted ridicule.

Translational research, applying the discoveries of basic science to human populations, is a critical element of medical science advancement.  In this country, we have suffered through the William Proxmire “Golden Fleece” awards and other attempts by politicians to gain political points by criticizing science they simply don’t understand. Because I was hopeful that you would be a true ally to special needs community, I was particularly dismayed to see you participate in this activity and ask you to spend some time speaking with individuals involved in basic science research and educating yourself on the promise these activities offer to people with rare, genetic and incurable diseases.

A recent article by the Massachusetts General Cancer Center published in the peer-reviewed journal Current Opinion in Genetic Development states that “more than 60% of genes implicated in human disease have Drosophila (fruit fly) orthologues.” A very short list of human diseases with fruit fly genetic correlates includes neurological and neurodegenerative disorders (including Parkinson’s, Alzheimer’s and spinal muscular atrophy), birth defects, developmental delays (including autism), tumor suppressor genes (ironically in melanoma, your running mate’s genetic curse), infertility, polycystic kidney disease, deadly and catastrophic lipid metabolism disorders, and Huntington’s chorea. Again, this is a short list.  I am not an expert in fruit fly research, but was able to compile this list in about five minutes by doing a simple Internet search of the government-maintained, freely available National Library of Medicine database of scientific publications (PubMed: I do not think it is too much to ask our national leaders who will be responsible for establishing crucial health and science policies to do at least that much.

Special needs communities have never had adequate representation in this country. Attempting to manage the extraordinary challenges of caring for chronically or catastrophically ill family members leaves us short of the financial resources and time required to mount effective lobbying efforts. As a result, we do not wield political clout and end up being an invisible minority group with few supporters. Your high-profile status gives you the opportunity to change that for us and I ask you to consider working with the groups who are engaged in daily efforts to improve the lives of special needs individuals through important research initiatives rather than attacking these efforts for political gain. We truly need and would welcome your support.


MM, Executive Director
Primary Ciliary Dyskinesia Foundation

For more information on PCD:



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