What the Obama/Biden Victory Means For the Chronic Fatigue Syndrome Community

November 9, 2012

by Cort Johnson

The results of the Presidential election leave the ME/CFS Community with a chance and some hope, but no guarantees of major change…

Research

With President Obama in office, the National Institutes of Health (NIH) will remain as budget challenged as ever, and the chances of getting significantly more funding remain low at best, but as the country digs its way out of the worst recession since the depression there is some cause for hope. When President Obama sent Nancy Ann De Parle – a high-level aide with experience in health care matters – to confer with Department of Health and Human Services (DHHS) leaders, he became the first President to advocate for – or even acknowledge – Chronic Fatigue Syndrome. Remarkably, De Parle stated that President Obama had never sent her to advocate on behalf of a single disease before.

The President’s promise (through De Parle) – to elevate ME/CFS’s priority at the NIH – was encouraging, but it will take work to ensure that an administration with many major issues on its plate is held to its promise. With the FDA Stakeholders Meeting, the CFS biobank, the ad hoc Working Group and a possible Definitions Workshop, there are signs of more upper-level interest in this disorder, but massive changes are needed too. President Obama’s embrace of the ME/CFS community’s situation doesn’t mean we’ll get them, but it does provides a starting place we can build on.

It might also be noted that, after successfully passing review, Dr. Reeves’ job at the CDC appeared secure when he was abruptly removed not long after the Obama administration began. Someone new on the scene, it appears, didn’t feel he was the man for the job.

The Romney/Ryan ticket would have come into office focused on deficit reduction – a worthy goal, but one with significant implications for federal spending. The Ryan budget’s proposed NIH cuts of 25% over two years, while probably not achievable, suggested that Ryan, who by all reports would have been given substantial influence in a Romney administration, holds little stock in federal medical research funding. The proposed cuts were so extreme as to give some members of his own party alarm.

Given its tenuous hold on funding, ME/CFS might have been one of the first programs not just to be cut, but to go. The federal advisory committee, CFSAC, would surely be gone as the DHHS struggled to purge every non-essential program.

While federal funding for ME/CFS is abysmal, the federal government still remains easily the biggest funder of ME/CFS research in the world. With the feds funding the Lights, Dr. Klimas, Dr. Broderick, Dr. Taylor and other researchers’ work, and with smaller research efforts like the CFIDS Association and Simmaron relying on turning pilot study data into NIH grants, adequate NIH funding levels are critical for significant progress to occur.

Health Care

The President’s re-election means that the Affordable Health Care Act will be implemented by a friendly administration. President Romney may not have been able to repeal the bill, but a Romney administration would surely have done its best to blunt it administratively, perhaps hamstringing it enough to force its eventual repeal.

The Affordable Health Care Act provides significant health care benefits to people with chronic illnesses, including barring insurance companies from refusing to cover or charging higher premiums to people with pre-existing illnesses. Once you get ill, you can’t be dropped from coverage. Lower income individuals will be able to apply for Medicaid and many middle income families should see a break in their premium payments. Lifetime limits will end. Insurers will have to provide rebates if they spend less than 80-85% of premium dollars on medical care. All of these should be helpful for an often financially struggling ME/CFS community. (Find a timeline here.)

Now the question arises: how will the law be implemented? Thus far only 15 states have begun to build the framework for the state online insurance marketplaces the law envisioned. (Click here to check out your state). The states have until Nov 16th to tell the federal government if they’re going to create their own exchange and, if they are, they must submit their plans by Jan 1, 2013. The federal government will establish exchanges where the states are unwilling or unable to do so. Thus far Alabama, Wyoming and Montana have passed laws blocking the Act, but the federal will override those laws.

The federal government will provide at least two nationwide health insurance plans that will compete directly with private insurers. One of the plans must be offered by a non-profit entity.

Given the high priority debt reduction, it’s possible that some benefits, such as the federal subsidies to help families up to 400% of the poverty level ($14,856 for an individual or $30,656 for a family of four), will get scaled back. Providing Medicaid to people with incomes up to 133% of the poverty level is another benefit that might get cut back, and the Supreme Court’s decision not to require states to participate in the Medicaid expansion means that some states may simply not honor that provision.

Assertion

Voters make choices based on many different factors, but it’s hard to argue that, at least with regards to Chronic Fatigue Syndrome, the ME/CFS community – with its need for more research funding and more affordable health care – is not better off with the Obama/Biden team at the helm.

 

Disclaimer: The views and opinions expressed in this article are those of the author, and do not necessarily represent the views of Phoenix Rising.

 

114 comments

{ 114 comments… read them below or add one }

Bob November 14, 2012 at 6:25 am
Waverunner

Because the FDA imposes expensive regulation, that makes it impossible to lower the cost of drugs. As long as you are required to test drugs through gigantic trials and inhibit competition, the price for drugs will not drop and the variety will be low.

I disagree with this far more than the free market for drugs.
Rigorous testing of drugs is the only way to test treatments for efficacy.
If we didn't have this system, then they'd still be selling snake venom as a cure for all sorts of things.

The PACE Trial is a good example of how medical trials work.
The psychiatrists tell us that CBT and GET treat ME, because ME is a psychiatric illness (or 'perpetuated' by psychiatric factors.)
They expected 60% of patients to respond to treatment with CBT and GET.
But the PACE Trial found that only 13% responded to treatment, at best (using their own figures, and their questionable methodology), and it found that the treatments were not clinically useful when measured using objective tests.
So, using the more rigorous standards of a medical trial, we have proof that ME is not a psychiatric illness (which we already know, but at least they can't legitimately promote it as one now.)
The same goes for medicines. It's only by expensive and rigorous trials that we can actually know what works and what doesn't.

I have seen an alternative system proposed for drug trials.
In this system, instead of the pharma companies paying for expensive trials, the government would take the risk and pay for medical trials. In return the government would take a cut of the profits for the successful products, so it would be cost-neutral.
This would lower the risk for individual companies, possibly increase innovation and competition, allow for more exploratory drug trials, and it would be cost-neutral for the government.
It might also ensure more honest trial data, as the trials would be run independently of the company intending to market the drugs.
The government could also insist that all the data published, and that more than one company can manufacture and market the product.
Companies could opt in or out of this system.
Anyway, it's just a model that I've seen proposed. It seemed like quite a good idea to explore.

Waverunner November 14, 2012 at 11:47 am

Hi Bob,

your PACE example is nice but there are several points of criticism. In a free market, studies like the PACE trial are redundant. Why? Because we, the people with CFS, always knew that we were physically ill. I don't need government to tell me something, that I already knew.

This whole approach of government intervention creates so many problems, I don't even know where to start. What if the PACE trial came to another conclusion (something that happened in many other studies), what if it said that CFS is a mental illness and CBT is the optimal treatment? You would have to look for mistakes in the study, spend lots of time and fight endless battles against psychologists. FOR WHAT? Even if you win this battle you gained nothing, nada, niente! You are still the same ill person. The only difference, you could now nail a certificate to the wall, that says: "I'm ill.". What did the PACE trial change? Is there one single working treatment for CFS, that was developed because of the PACE trail? No, there isn't. Is government developing treatments for CFS now? No, it isn't. To sum things up, the PACE trial used up time and money, that should have been spent on treatment. Psychologists can think whatever they want, I don't need their opinion, unless of course you depend on them in a government run healthcare system.

In a free market, people with CFS seek help, they create demand and this creates supply. The problem is not, that psychologists claim, that you are mentally ill, they can talk as much as they want (I really don't care), the problem is when you need proof, that you are ill, because otherwise you won't get any treatment even if you could pay for it. Doctors will specialize in CFS and scientists will develop treatments, because without government, they can afford it. No patient is forced to take any of these drugs but sooner than later, the working treatments will prevail. The working treatments for CFS probably will not come from the CFS field but from all kinds of fields (IBS, autism, cancer, infectious diseases etc.). Regarding the snake oil argument, you already can buy snake oil today. If a company says that its pills cure cancer and if this is fraud, the company should be punished severely, but this has nothing to do with a free market. Fraud is fraud and needs to be punished.

Bob November 14, 2012 at 1:03 pm
Waverunner

Hi Bob,

your PACE example is nice but there are several points of criticism. In a free market, studies like the PACE trial are redundant. Why? Because we, the people with CFS, always knew that we were physically ill. I don't need government to tell me something, that I already knew.

This whole approach of government intervention creates so many problems, I don't even know where to start. What if the PACE trial came to another conclusion (something that happened in many other studies), what if it said that CFS is a mental illness and CBT is the optimal treatment? You would have to look for mistakes in the study, spend lots of time and fight endless battles against psychologists. FOR WHAT? Even if you win this battle you gained nothing, nada, niente! You are still the same ill person. The only difference, you could now nail a certificate to the wall, that says: "I'm ill.". What did the PACE trial change? Is there one single working treatment for CFS, that was developed because of the PACE trail? No, there isn't. Is government developing treatments for CFS now? No, it isn't. To sum things up, the PACE trial used up time and money, that should have been spent on treatment. Psychologists can think whatever they want, I don't need their opinion, unless of course you depend on them in a government run healthcare system.

In a free market, people with CFS seek help, they create demand and this creates supply. The problem is not, that psychologists claim, that you are mentally ill, they can talk as much as they want (I really don't care), the problem is when you need proof, that you are ill, because otherwise you won't get any treatment even if you could pay for it. Doctors will specialize in CFS and scientists will develop treatments, because without government, they can afford it. No patient is forced to take any of these drugs but sooner than later, the working treatments will prevail. The working treatments for CFS probably will not come from the CFS field but from all kinds of fields (IBS, autism, cancer, infectious diseases etc.)

Yes, the reason why we, in the UK, need to prove that CFS/ME is not a psychiatric illness, is because the NHS and government research-funding bodies, do not seriously treat CFS/ME as a biomedical illness. This leaves us vulnerable to being accused of being malingers, or neurotic, etc. And the NHS is not a free market, so we can't easily shop around for alternative treatments, or sympathetic doctors. Although, we can chose alternative local doctors, and we are free to go private.

You make a good case for a free market in health care, however, does the current US system work better?
If CFS is treated as a psychiatric illness for insurance purposes, and patients with long-term CFS can have their insurance withdrawn, and patients with existing illnesses can't get insurance, then do you think it's a better system, if some, or many (I don't know the stats), people are unable to access health care at all?
(That's a question, not a statement.)

When a widely accepted biomedical treatment is available for ME, then it will be available to all of us on the NHS.

Waverunner

Regarding the snake oil argument, you already can buy snake oil today. If a company says that its pills cure cancer and if this is fraud, the company should be punished severely, but this has nothing to do with a free market. Fraud is fraud and needs to be punished.

My 'snake venom' argument was a response to your argument that medicine should not be tested in rigorous medical trials (or that's what I interpreted you to say).

You said:
"As long as you are required to test drugs through gigantic trials and inhibit competition, the price for drugs will not drop and the variety will be low."

I was pointing out that if medicine is not regulated or rigorously tested, then you can't possibly know whether snake venom cures cancer of not, so you cannot know if someone is being fraudulent or not.

Now you seem to be arguing that there should be some regulation?

Waverunner November 14, 2012 at 1:59 pm
Bob

You make a good case for a free market in health care, however, does the current US system work better?

I was pointing out that if medicine is not regulated or rigorously tested, then you can't possibly know whether snake venom cures cancer of not, so you cannot know if someone is being fraudulent or not.

Now you seem to be arguing that there should be some regulation?

The US system is not better and the US system has not much to do with a free market either. As long as the FDA exists and as long as the current prescription laws exist, there will be no free market.

But lets suppose we have a free market and some company comes up and says that their pill cures cancer. In this case some district attorney should show up, should demand some scientific proof and if not given, should send these people to jail. This should be true for all other cases where companies make wrong claims.

But also the customer should learn, that he/she has to take responsibility for him/herself. You cannot believe what everyone tells you and if you are not sure, you should visit a doctor.

alex3619 November 14, 2012 at 5:02 pm
Bob

I have seen an alternative system proposed for drug trials.

Hi Bob, do you have any links to this proposal? Thanks, Alex

alex3619 November 14, 2012 at 5:06 pm
Waverunner

The US system is not better and the US system has not much to do with a free market either. As long as the FDA exists and as long as the current prescription laws exist, there will be no free market.

But lets suppose we have a free market and some company comes up and says that their pill cures cancer. In this case some district attorney should show up, should demand some scientific proof and if not given, should send these people to jail. This should be true for all other cases where companies make wrong claims.

But also the customer should learn, that he/she has to take responsibility for him/herself. You cannot believe what everyone tells you and if you are not sure, you should visit a doctor.

Hi Waverunner, this is also regulation. The point is that you are shifting regulation around, not eliminating it. Its an out of my portfolio solution – SEP, someone elses problem. However, someone always pays. The question is who pays, when, and how: thats what different schemes influence. We need the level and type of regulation that provides optimum results to society. Obviously a free market is desirable, but equally some level of regulation is desirable. Its not an either or debate, its a how-much-of-one-or-the-other-debate.

Let me tell you where I think full society-wide deregulation and rampant free market goes: the wild west. Don't like your doctor? Get your gun. Don't like your insurer? Get your gun. Don't like the lawman? Get your gun. Don't like your spouse … Under a total freedom policy its OK for someone to do this but its OK for others to stop them. The same goes for companies and other business. The wild west all over again, though perhaps the wild west is not the best example given that a lot of what I think about it is probably myth.

You see examples of this in countries like Sumalia. Its called anarchy. How many are really free in a failed anarchic state? You get out of it by creating regulations and enforcing them.

The opposite is also bad. A totally regulated society … look at the old Soviet Union or Nazi Germany. Total enforced regulation … but who would want to live there? China is an interesting case and still a work in progress. Their politics is highly regulated, but they have a fairly deregulated market. In fact, its so deregulated its a problem for the USA. Many manufacturers infringe copyright and patents for example. Thats a free market … why have patents? Why have copyright? Thats regulation, be gone with ye! Yet they have executed people for putting poison in baby food. Obviously there is some regulation, but its often after the fact. They are also not effectively addressing major problems like pollution.

There is an old Celtic tradition … everything is legal if you can get away with it.

Society needs balance. Regulations, laws etc. are part of that. So are taxes. Politics is about trying to get the balance right given thousands of competing interests.

Let me address the district attorney idea specifically. In a regulated market violations are relatively rare. You need a few district attorneys. In an unregulated market violations will be much more common. You don't need a few district attorneys, you need an army of them, support personel, investigators, law enforcement, judges, courtrooms, prisons and more regulations regarding seizing property to pay debt. The balance has shifted from one part of society to another, but someone still has to pay for all this. In the current funding provisions this might mean more taxes not less … and so the companies pay yet again. Is that a free market?

There are reasons why my politics tends to be centrist. Extremes often get things wrong, though of course a centrist policy can be wrong too if the balance is wrong. By wrong I don't mean absolute wrong either, I mean the results are often to the detriment of society.

Bye, Alex

Bob November 14, 2012 at 5:27 pm
alex3619

Hi Bob, do you have any links to this proposal? Thanks, Alex

No, sorry Alex. It was a discussion that I came across ages ago. I can't remember if I read it, heard it, or saw it on TV. And I can't remember if it was in relation to the UK or the USA. So, I can't help you much really. I seem to remember them discussing how the current system stagnates research because pharma companies have got to commit so many millions before they test a drug, so they're not prepared to take many chances with experimental or doubtful drugs.

alex3619 November 14, 2012 at 5:45 pm

Its OK Bob, I am interested in this topic and will be discussing it at some point. I am aware of several proposals and have one of my own, though I don't have links handy either. Its all buried in a whole lot of papers that I have that I will be using for my book. Some of it might appear in my next two planned blogs. Bye, Alex

ggingues November 14, 2012 at 10:49 pm

he morning after Tuesday’s vote, there is one thing every commentator agreed on. The election of Barack Obama guaranteed that his signature piece of legislation—health reform—can now go forward. Republicans are powerless to stop it.

Yet there is something all these commentators are overlooking. There are six major flaws in ObamaCare. They are so serious that the Democrats are going to have to perform major surgery on the legislation in the next few years, even if all the Republicans do is stand by and twiddle their thumbs.

Here is a brief overview.

ObamaCare is not paid for. At least it’s not paid for in any politically realistic way. As is by now well known, the legislation will lower Medicare spending over the next 10 years by $716 billion in order to fund health insurance for young people. This reduction will primarily consist of lower payments to physicians, hospitals and other providers—reductions that are so severe that they will seriously impair access to care for senior citizens.

In the last two Medicare Trustees reports, the Office of the Medicare Actuaries has predicted that these cuts will force one in seven hospitals out of the Medicare system in the next eight years. Payments to doctors under Medicare will fall below Medicaid levels in the very near future and will fall continuously behind Medicaid in the years ahead. From a financial point of view, seniors will be less desirable patients to doctors than welfare mothers. Harvard health economist Joe Newhouse envisions that seniors may have to seek care in the same places that now cater to Medicaid beneficiaries: at community health centers and in the emergency rooms of safety net hospitals.

During the election campaign, Barack Obama claimed that his administration had found $716 billion of “savings” and Democrats generally claimed that the money would come out of the pockets of doctors, hospitals and insurance companies, with no bad effects on seniors. In fact, no “savings” have been found and seniors will indeed be affected by low reimbursement rates—just as low-income patients must deal today with the fact that almost one in three doctors is not taking any new Medicaid patients.

But if the current crop of politicians is afraid to admit that they have taken something away from senior voters, what do you think future politicians are going to do when real pain starts setting in? The betting in Washington is that the cuts will be restored. That will mean that ObamaCare will hugely add to deficit spending, indefinitely into the future.

ObamaCare promises what it cannot deliver. To most politicians, acquiring health insurance means that people will be able to get medical care that the uninsured are not now getting. Yet in order for the country as a whole to get more medical care, there must be more doctors and nurses and hospital personnel—something that ObamaCare does not create.

Adding to the problem is that the law will require all of us to have access to a long list of preventive services without deductible or copayment. Economists at Duke University calculated that if every American actually got all of the recommended screenings and tests, the average primary care physician would have to spend 7 ½ hours of every working day doing nothing else but giving preventive care to mainly healthy patients!

What we will be facing is a huge increase in the demand for care, but no change in supply. As the waiting times grow, providers will tend to see those patients first whose insurance pays the highest fees. Those in plans that pay below market will be pushed to the rear of the lines. These will be the elderly and the disabled on Medicare, poor people on Medicaid and (if the Massachusetts model is followed) the newly insured in subsidized plans in the health insurance exchanges. In other words, access to care is likely to diminish for our most vulnerable populations.

cont'd

http://www.independent.org/newsroom/article.asp?id=3495

Waverunner November 15, 2012 at 3:42 am

Hi Alex,

to make things clear, I'm for a libertarian state. This has nothing to do with anarchy. If you think, that you can shoot someone because you have a gun and don't like that other persons attitude, well, have fun in prison because this is where the state would put you.

SilverbladeTE November 15, 2012 at 5:40 am

Myabe if we put the insurance company execs in front of juries for mass murder (see UNUM), destroy the corporations utterly and use their misbegotten money, slap down hard on military spending which is used for idiot wars of aggression, use that money to *offer free education to doctors/nurses* and then bring in true UHC but with small efficient, and tightly responsible local units and central government only for settign standards and laws of the UHC system not interfere with it for political/arrogant crap (as occurs in UK)…you'd get something of true value

but, NO! long as the kleptocrats keep conning folk into thinking that health care is a thing for the strong, for the dynamic, the successful and they deserve more because they do more etc etc…well, you get the society you deserve.
When you worship at the altar of Mammon, you shouldn't expect any return but in Mammon's own coin ;)
This includes extermination of the sick and disabled which means, *us*, hence, as noted, the isnurance ocmpanies who have been our MAIN ENEMIES.
Keep supporting your own executioner if you like, your choice of course.
You CANNOT have health as "for profit" and have it repsonsible and for the benefit of all citizens, this means it is either UHC, or for the elite.
We waste billions of idiiot wars and bombs….for what? more veterans sucmbag politicians salute at gravesides for easy re-election fodder, yet ignore the surviving veterans who get their legs, faces and genitals blown off because they are just a cash drain/not photogenic.
YAAAAY war on terror YAAAAY war on drugs..and what have they achieved? made the world a dman sight worse.
Will the Republicans dela with that? no.
Because they have no damn CLUE what goes on outside US borders, in fact, they have no clue what oridnary US citizens are actually liek (47%?)
Not that Democrats are "super" either, system's a gross mess, duopoly is not democracy and corporations literally, openly can buy candidates now….

thus Obamacare may far from the best, it may be crappy but it's better than the big pile of nothing.
oh and please epxose the woes of the UK system if wish to comapre, be very happy to epxlain some of it to ya ;)
thing is, at least we're slowly exposing the villainy. US investigative and unbiased media died a long time ago, bouht and paid for by a handful of corproations.
thus, say, rongdoing sin Obamacarehave much less chance of ever being exposed, as well as any other form of worng doing.
not Liberal media bias, it's corrupt, nepotistic propaganda blanket dropped on entire populace, they dion't give a dman Left or Right.
can't have corporation A exposing that Corporation B's products are dangerous because Corporation A has 20% shares in Corporation B…unless they plan a merger on more faovruable terms and use expose's as means to reduce share prices!
thats' the reality.
Sigh, man does it suck :(

alex3619 November 15, 2012 at 6:05 am
Waverunner

Hi Alex,

to make things clear, I'm for a libertarian state. This has nothing to do with anarchy. If you think, that you can shoot someone because you have a gun and don't like that other persons attitude, well, have fun in prison because this is where the state would put you.

Hi Waverunner, which implies a highly regulated society, with laws and enforcement. Those regulations would also cover business. Vigilance is the price of liberty, a quote I hear often. That implies people empowered to watch and to act. Responsibility and freedom, together. To get such a society you need a lot of laws and regulations, plus the institutions to enforce them. Then you need taxes to pay for it all, though some of that can come from targeted fees. If you want freedom you can't get away from regulation. The issue is not whether to regulate, but where, when and how much.

Bye, Alex

AFCFS November 18, 2012 at 10:09 pm
Dainty

The problem is, there's no such thing as "free" healthcare.

No, but there is such a thing as affordable healthcare. To me the entire system is currently based on greed and it is connected and spills over into so many other aspects of society that it is like a tumor that needs to be removed.

Dainty

It appears to me that the affordable health care act will force health insurance companies to lose more money. Like any business, they have to make money in order to remain in existence.

That is because they are nestled in a capitalistic system that has extended itself beyond he pale of morality and lives only for profit. Greed once again.

Dainty

It's a warped system, but forcing them to "help" us more will only warp the system further, from what I can see.

Maybe it will just collapse on itself. People in a society seem to make the mistake in thinking that the society they are in is destined to outlive all others. We are a nation of not even 250 years old and showing signs of a downward spiral. IMO, as a nation we started to decline shortly after WW II, around 1950 – and just have not hit bottom yet.

Dainty

Regarding Medicaid. Do you know how much doctors get paid when you visit them with this "free" system? I found out that for an hour long appointment medicaid would only pay $50 to my doctor. Average cost of medical school is $140,000. No wonder so many doctors are refusing medicaid! They need to put food on the table, too.

Show me a doctor that cannot put food on his family's table, and I will show you a doctor who may have CFS.

Bob November 21, 2012 at 8:08 pm

I've found the evidence that I was relying on, when I said that the NHS is one of the most efficient health care services in the world. This article is definitely worth a read… It has some very interesting stats.

http://www.guardian.co.uk/society/2011/aug/07/nhs-among-most-efficient-health-services

NHS among developed world's most efficient health systems, says study

Report in the Journal of the Royal Society of Medicine finds health service second only to Ireland for cost-effectiveness

The NHS is one of the most cost-effective health systems in the developed world, according to a study (pdf) published in the Journal of the Royal Society of Medicine.

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