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

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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.
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The problem is, there's no such thing as "free" healthcare. Someone, somewhere, has to pay the bills.

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. So if they're forced to lose money in this way, the result will be that they need to start charging more in order to stay ahead. They might raise the rates for everyone, or they might inflate the prices of prescription drugs and proceedures to even more ridiculous levels than they are today (there's no resource reason an MRI should cost more than $5, for example) or perhaps increasing the co-pay. Whatever the case, people end up paying more - either for the insurance to begin with, or if you don't have insurance you're paying more for procedures/drugs out of pocket because the insurance companies have jacked the price up so high.

I think one reason the health insurance companies signed onto the act to the extent they did is that it does open a huge new pool of young people to them who will pay premiums and help their bottom line...

The private companies will be in competition with the two government plans as well..Its going to be really interesting..

Good point on Medicaid and the poorer services that may be available......I imagine that you'll be able to pick your plan if you're low income; the govt will allow you to participate in Medicaid or it will subsidize your choice of another plan.
 
The private companies will be in competition with the two government plans as well..Its going to be really interesting..

How is it competition if the government plans are all free to the end user?

I imagine that you'll be able to pick your plan if you're low income; the govt will allow you to participate in Medicaid or it will subsidize your choice of another plan.

Could you elaborate on this?
 
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. Medicaid recently asked me to find a new primary doctor on their system, and gave me a list to choose from. When my caregiver called several dozen on my behalf, every single one of them said they were not taking any new medicaid patients. I can't say I blame them. But I have to wonder....how does putting more people on medicaid help anything medically? I once shared an ER room with a woman experiencing very severe symptoms (was shockingly jaundiced, projectile vomitting, severe abdominal pain) and they sent her home with no help because nothing showed up on the CT scan. They of course stressed that she should follow up with her primary care doc, but as she told me she had not yet been able to find a doctor willing to take medicaid so the only help she could ever get was in the ER, where they only ran tests and bounced her out again.

That doesn't sound like the kind of care that would be helpful to someone with ME/CFS.

Issues in the medical system are complex, but I believe it's important when considering political changes to view all the ramifications on everyone and not just what would be easiest on us. Medicaid gave me the option of asking my doctor to get on their system. I couldn't do it. My doctor has bent over backwards to cut costs for his patients. He practices in a dinky run down shared office complex and works as his own secretary, and somehow manages to squeak by charging only $60 for subsequent visits. His reputation in the field is such that that every doctor of that specialty I've emailed accross the country recognizes him by name. He could easily charge three times that much as many doctors do, but instead he chooses to live by more humble means so that the average person can afford to see him.

If he can do that, I can choose to make sacrifices to be able to scrape together $60 to visit him once a month. And to top it all off, this is the doctor that's bringing about all this progress that I've been writing about. He's the one getting me well.

What would happen if he was forced to give out his services for free to certain patients? He'd have to raise the price for regular patients, right? And then those regular patients wouldn't be able to afford seeing him unless they got on the "free" list too. You see? It's a vicious cycle.

I understand there's a lot of people without money. But in our desperation lets not forget that doctors need to provide for themselves and their families, too.
"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. "

Over here in Australia where we already have a free health medicare system.. most doctors do not do 1 hr appointments but I know my last CFS specialist appointment.. for a one and a half hr appointment, medicare paid him just over $100 (i think was ($105). I dont know whether your system is going to work the same but some of these doctors on top also charge the patient what is called here a "gap payment" .. often this is just a very small amount that most patients can afford (eg $25-$30) . He unfortunately had a gap payment of over $200 which I had to pay on top (most doctors thou dont charge like that). This doctor has a very flash house in a very flash area in which he also has his own clinic with a beautiful stream going throu the place etc etc

Even my other CFS specialist who at times Ive had up to 3hr appointments with him.. and wasnt changing me any gap (so completely free to me) so solely relying on the medicare payment.. seemed to be doing okay money wise (had a big properly, very nice cars etc etc.). This specialist thou didnt precribe meds due to him choosing to have no insurance against someone sueing him for anything as he didnt want to pay those high costs to protect himself when he was choosing to only work part time..(so he got around that issue by doing letters to my GP and telling him what I needed to be on and asking my GP to prescribe).

All I can say is that Ive never known a doctor here to be poor thou we have a so called free medicare system here.

Yes doctors do charge a lot to do uni etc but they certainly do do financially MUCH BETTER then a lot of other kinds of jobs. Even at $100 for one and a half hours work to me dont sound bad at all. (When I was able to work.. all I got was under $19 per hour and that was for housecleaning and gardening work which is probably harder then sitting at a desk dealing with patients.
 
This report on the REAL NEWS explains what a single payer plan would look like in Maryland. It also goes into the huge amount of waste (in terms of money and time) that goes into insurance claim management.

"a recent study looking at a potential single-payer or government-run health insurance plan for Maryland comes to the conclusion there'd be enormous savings over the existing plan."

http://therealnews.com/t2/index.php?option=com_content&task=view&id=31&Itemid=74&jumival=8648
 
Yes doctors do charge a lot to do uni etc but they certainly do do financially MUCH BETTER then a lot of other kinds of jobs. Even at $100 for one and a half hours work to me dont sound bad at all.

I really appreciate hearing about healthcare systems in Australia and Europe. It sounds to me like a much much better deal than what we have here.
 
Nothing is going to happen unless we fight for it, and we have to make a case that appeals to people outside our circle.

We should use case (substantial in number) of productive people who can no longer work. There are people with ME who were formerly paying substantial amounts of tax, often being W-2 in the 100-200K range, or athletes & other people who are obviously not sloths. Most people don't know or believe this is possible.

Let's say there are 1M known to have ME in the US. For this example, let's say 2/3 are under 65 and 2/3 of those had medium skilled or better employment. Because ME is not easily diagnosed, I suspect the currently known cohort skews to the more middle and up simply because they eventually get to a doc who diagnoses ME/CFIDS. Can't prove that, it's just what I see.
SO, that's about 1/2M who would be paying about $30K/yr each in Federal, payroll and Medicaid taxes. That does not including state and property tax. The loss of Federal tax alone is six billion dollars. The loss of productivity (total output) is likely over 50 Billion. This does not include the trickle of SSA, Medicare or Medicaid received. With better data one could deliver numbers with a firmer foundation, I believe they would also be larger.

------ Thus, present ME as an economic loss of >50 billion.
Is it not worth spending 2% of that (1 B) annually to cure the disease?
 
This report on the REAL NEWS explains what a single payer plan would look like in Maryland. It also goes into the huge amount of waste (in terms of money and time) that goes into insurance claim management.

"a recent study looking at a potential single-payer or government-run health insurance plan for Maryland comes to the conclusion there'd be enormous savings over the existing plan."

http://therealnews.com/t2/index.php?option=com_content&task=view&id=31&Itemid=74&jumival=8648

If this data is accurate, and if it reflects on average the US situation, then projecting these savings across the USA is way over one hundred billion dollars (on the order of $166 Billion) country wide, based on basic admin savings of 3.1 billion, which is only part of it. Thats a huge impost the American public is paying under existing arrangements. Private insurance according to this has administrative costs roughly seven times what the proposed new insurance system would cost. Thats big money. On average its about $533 per person in the USA.

In comparing a hospital in Canada with USA, of a similar size in doctors in patients, the Canadian hospital needed 2 people to handle insurance, an American hospital they compared this to needs 450. Is this efficient?

They then go on to analyze other savings. It looks like the average saving in total per person in the USA is over $2200. That is, the insurance could be $2200 cheaper per annum and possibly $2275 per person cheaper. How is this different from paying for big government? Big insurance amplifies the costs.

The increase in doctor availability due to simplified administration would help ease the burden on poor availability of doctors, though the increase in patients seeing doctors would probably absorb this.

To put this in perspective though, part three will discuss increased costs. They were not addressed in this talk, this was about savings. Part 3 is here:
http://therealnews.com/t2/index.php?option=com_content&task=view&id=31&Itemid=74&jumival=8670

In Maryland, despite the savings total cost would probably be almost as high, but this would be because of everyone getting healthcare. The benefit to the economy would also make things better. Business administration costs would also decrease substantially, providing a further boost to businesses. It would also make businesses more profitable in Maryland. Reduced costs, increased health, bigger economic growth and increased business competitiveness ... its no wonder some are calling this a no brainer. However this is still all theory. In reality I think some state is going to have to do this, find out the real costs and then the country could decide.

Here is a written article by the same guy on this topic:
http://www.dollarsandsense.org/archives/2012/0312friedman.pdf

On the flip side this would be a state run monopoly. Sure its efficient .. but what is next? Many other essential services are being inefficiently run by being managed by private enterprise (power companies come to mind). Others are much more efficiently run by business than government. Who gets to decide?
 
In regard to the cost of medical services for us, having an un-treated or ineffectively treated illness for decades costs a very great deal when you count the expense of seeing doctors and other practitioners to no avail as well as the pay lost from employment. If science could come up with effective means of diagnosis then treatment for us, all this waste could finally stop. The cost of effective diagnosis and treatment would be far less, in comparison with the cost of a disabling chronic illness from time of onset to time of death, because right now the situation is known to be this: no diagnostic criteria yet agreed upon by the medical establishment, no biomarkers or tests, no treatments and no cure. To think that this "no nothing" disease is not expensive, however, is foolish. Let's estimate not only the cost of lost wages but the cost of all those medical appointments and treatments that don't work. Maybe some of us could come up with an estimate. Maybe a researcher could design another questionnaire for this purpose. That is what the government ought to put into its calculations when it weighs how much money to commit to good research, then into the institutional changes necessary in how we will be evaluated and treated.
 
The NIH argue, based on my understanding of the last CFSAC, that there are inadequate numbers of quality research proposals, so ME/CFS misses out. In short, there are not enough researchers applying for grants.

Which sounds like a catch-22. Researchers don't bother putting in applications, because there is not enough money to get enough funding (and to make a career in CFS research), when asked about the lack of funding, officials claim it is due to lack of applications.
 
In regard to the cost of medical services for us, having an un-treated or ineffectively treated illness for decades costs a very great deal when you count the expense of seeing doctors and other practitioners to no avail as well as the pay lost from employment.

I use an old figure of 20-30 billion $ for the USA, which for simplicity I call $25 billion. Since the world economy used to be roughly four times the USA, I project a world cost of $100 billion. I have long argued that its crazy to willingly lose a hundred billion per year (this includes lost productivity) and not do much about it. Its crazy politics, crazy medicine, and
crazy economics. I put a fair research fund for CFS in the USA alone at about $120 million per year, or 20x the current rate. However I think the rest of the world should be thinking about an additional $360 million. The USA should not be one of the few countries to be paying for this.
 
Health insurance companies aren't making losses, so they aren't going to "lose more money". They might earn less money, but that's not necessarily a bad thing.

Do you think they're going to be okay with earning less money, or do you think they're going to find another way to raise rates so that they aren't earning any less?

I strongly suspect the latter.
Or find another profession, with less stress and a more reasonable way to make a living?

GG
 
In reply to Dainty: The answer is simple and complicated, and of course political too.

Doctors, hospitals, and medical care in general worked much better, and was much, much cheaper before the insurance companies and HMO's got in "the business" and had to listen to shareholders who need to see increasing profits for their investments to pay off. They're done very well. Much better than the patients they're supposedly serving.
.

And some people think that Medicare is big reason costs increased so much. the more gov't subsidizes something, the more of it you get with inflation. Look at housing and education as other examples. The gov'ts fix always creates unintended consequences. People react to externalities and internal workings. therefore I doubt that gov't is the solution and this bill is already expected to cost 2 times as much as sold as, and will continue to grow. But hey, we can just print more money, and there will be no consequences, right?

Didn't doctors actually make home visits back in the "old days"? Which I am sure our bedbound patients would like. No system is perfect, but we should probably go with the one that causes less damage.

GG
 
I'm not sure competition alone is enough. Theoretically, we have the system set up now to allow that to happen, and it doesn't seem to be working very well. I don't know how that could be made to work better without increasing direct regulations on health insurers.

In the Netherlands, health insurance companies have to offer the "basic" policy (way better than anything I've had in the US), for a certain maximum price - currently about 110 euros per month I think. Then those companies can compete with each other by 1) offering the basic policy for cheaper than their competitors, 2) offering better services with the basic policy, and/or 3) how they handle their non-basic policies.

This does cover at least some ME/CFS "specialist" visits, and part of (mostly useless) ME/CFS "therapist" visits. It has covered 100% of my ME-related referrals and prescribed drugs. I don't see why a similar system wouldn't work in the US - the main problem for us in any accessible system is going to remain to be getting seen by real specialists.

Do they post prices in the Netherlands? Because it is hard to find out the price here in the USA, so people cannot smartly shop around, if they have the time.

GG

PS Another idea would be Health Savings Accounts, where the money rolls over, so people can start saving at a young age and when they get older they have a pool of money to pull from to take care of themselves. Of course this is not helpful to young people with costly conditions, but I would think something else could be figured out.
 
I don't know its going to be research funding,though. The NIH's budget is tighter than a......well - its very tight. I looked at funding NIH wide from 2010-2012...From 2010 to 2011 there were small changes in funding - sometimes a bit up and sometimes a bit down depending on which disease you looked at...but the status quo prevailed...From 2011-2012 I couldn't find any changes - funding appears to have been completely frozen across the board and it looks like the same is true for 2013....

That's my point, though - ME funding is so tiny compared to ME's impact on people in terms of severity and numbers that simply giving us our fair share would hugely increase the ME research funding budget, even if the NIH budget were decimated: literally decimated, cut to 10% of its current size. Cuts in the NIH budget are a complete red herring in the ME funding situation. Fair redistribution is what we need to focus on.
 
There's actually some fairly decent insurance alternatives out there. I know one that's basically just a massive group of people who pay each other's medical bills. There are certain lifestyle requirements to belonging in the group that help keep costs down, and to my understanding it's not only cheaper but run with more integrity, particularly since it's a non-profit.

That's interesting. I know pretty much zilch about the US healthcare system but in the UK, our NHS (National Health Service) is paid for through our taxes and everyone can use it, free at point of use. There is never a bill to pay and no lifestyle requirements. There's no such thing as being too poor to afford a heart bypass: if you need one, you get one (or you get on the waiting list, if there is one). There's also, in parallel, a private healthcare system in which better-off people pay health insurance or one-off fees for treatment if they don't want to wait or want an elective procedure that the NHS don't fund, but it's used by a minority (about 8%, according to Wikipedia).
 
Cort said:
The private companies will be in competition with the two government plans as well..Its going to be really interesting..
How is it competition if the government plans are all free to the end user?

Cort said:
I imagine that you'll be able to pick your plan if you're low income; the govt will allow you to participate in Medicaid or it will subsidize your choice of another plan.
Could you elaborate on this?

I might be wrong about this Dainty, but my understanding is that a big feature of the new system, is that the US government is going to negotiate to buy into two different private insurance plans itself (one of which must be run by a non-profit), which will both be available for all citizens to buy. These are not medicaid etc, but are normal insurance plans available to citizens to buy, and they will be in competition with all the usual insurance plans.

Each state can organise this for themselves, or the federal government will provide it to any states that don't organise it.

I might be wrong, but that's what I've read.
 
How can the NIH find it reasonable that MS gets 20 times more money than ME/CFS, when ME/CFS in fact affects twice as many people? (so it's 40 times more per patient) What does the NIH respond to this type of question, does anyone know?

The NIH argue, based on my understanding of the last CFSAC, that there are inadequate numbers of quality research proposals, so ME/CFS misses out. In short, there are not enough researchers applying for grants.

The opposite argument has been raised by advocates however: if you fund it they will come.

Bye, Alex
Thanks Alex, I've heard that too. But with that reasoning/excuse, they should be able to say that if they just got good enough applications, they would be willing to fund ME/CFS research at a level corresponding to, for example, that of MS, right?

I haven't been able to watch the CFSAC meetings myself, but I read in this great report from the October meeting: http://www.masscfids.org/resource-library/15/423
this quote:
"When many present indicated that a major increase in funding is necessary, for example $100,000,000, Susan Maier seemed to find that totally unrealistic"

- and yet, as Dr Grobstein points out, $250 million or even $300 million would be adequate and in line with MS research, given the double prevalence of ME/CFS compared to MS.

It would be interesting to hear the NIH comment on what level of funding they think would be appropriate for ME/CFS. (Cort, any chance you could get an interview with Dr Maier? Or could any of you advocates who are in active dialogue with the agencies try to get through?)
 
Do they post prices in the Netherlands? Because it is hard to find out the price here in the USA, so people cannot smartly shop around, if they have the time.

It seems like they have to have their rate listed somewhere, or maybe they just do that to advertise. There used to be a website comparing the services, but that got bought by one of the insurance companies about a year ago. But health insurance ends up in the news pretty often, so I'd guess most people know what companies are offering the lowest rates for the basic policy - as an example, my insurer and another were even in the English-language Dutch news a few days ago because they're reducing their policy rates by a few euros compared to last year: http://www.dutchnews.nl/news/archives/2012/11/cz_cuts_cost_of_basic_health_i.php

One article also mentioned that most people (60%?) have never changed insurers during the yearly period when it's possible (November and/or December?). Prices are generally clustered pretty close together, and all at or under the maximum amount they're allowed to charge, so for the basic plan it's a matter of a few euros per month.
 
That's interesting. I know pretty much zilch about the US healthcare system but in the UK, our NHS (National Health Service) is paid for through our taxes and everyone can use it, free at point of use. There is never a bill to pay and no lifestyle requirements. There's no such thing as being too poor to afford a heart bypass: if you need one, you get one (or you get on the waiting list, if there is one). There's also, in parallel, a private healthcare system in which better-off people pay health insurance or one-off fees for treatment if they don't want to wait or want an elective procedure that the NHS don't fund, but it's used by a minority (about 8%, according to Wikipedia).

Hey Dainty--

What Sasha said. (my bolds) This is what I was previously trying to explain to you. Now I have a concrete example. Thanks Sasha.