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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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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?

Insurance companies are mostly a HUGE SCAM. They are all about profiteering at the expense of consumers. There will have to be regulations placed on them, to prevent them from getting away with murder (literally) in the future.

My friend's daughter worked in France last summer, and while there she became ill with what turned out to be appendicitis. Her appendectomy in France cost $3000... which is the same price it would have been in Germany. What would the same surgery cost here in the US....? Anybody know? When my friend looked into it, she was told it would be around $28,000. :eek:

Health costs in this country are insane, and that's due to the FOR PROFIT insurance business. Obamacare was a start, but it's not enough. What we really need is a single payer system, with a private insurance option for those who want it and can afford it.
 
Welcome back, Cort!

You're right that it's important to the whole world what the US govt spends on ME research because all the other budgets are tiny by comparison.

I think we need to challenge the poor level of funding given to ME, given that the disease severity profile is similar to that of MS but affects many more people. Even if budgets were to be cut, if we got our fair share, we'd have shedloads compared to what we're getting.

Dr Joan Grobstein, in her evidence for CFSAC, said:

"MS is estimated to affect approximately 400,000 Americans and receives $121 million per year from NIH for research. ME and CFS are estimated to affect at least 1,000,000 Americans. It therefore seems reasonable to allocate $302 million annually to ME and CFS research."

http://cfspatientadvocate.blogspot.co.uk/2012/10/cfsac-testimony-dr-joan-grobstein-on.html

I'd like to see a campaign for ME funding called 'Help us find our missing $302 million'. Imagine that in a newspaper ad, or on banners in front of the NIH building.
I agree, Sasha. I also thought this part from Dr Joan Grobstein's written testimony was excellent:

"NIH research funding for CFS is currently $6 million per year. This level of funding is 220th out of 232 diseases. There is no funding for ME, i.e., no funding that requires using the Canadian definition. There are no centers of excellence."
http://cfspatientadvocate.blogspot.co.uk/2012/10/cfsac-testimony-dr-joan-grobstein-on.html

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?
 
Insurance companies are mostly a HUGE SCAM. They are all about profiteering at the expense of consumers. There will have to be regulations placed on them, to prevent them from getting away with murder (literally) in the future.

Yep, they need to be better regulated.

Going outside of the ME experience I watched the insurance companies squeeze my parents. The were self-employed with a successful small business for 20 years, very healthy in habits and lack of actual illnesses until my step-father came down with a serious neurological disorder. Their private insurance (they never went uninsured) doubled one year, doubled again the next, doubled again, etc. They saw the trend and because of it they had to close their business, my mother went back to school and got a job at a local university JUST for the benefits. She was ~50 when this started, working full time, going to school full time in addition to being a primary caregiver. This was, let's see probably in 2002-2006, so NOTHING to do with ACA, just with the greed and dysfunction of insurance companies.

This just doesn't seem right to me, and I don't see how we can condone such behavior (and worse!) just so a particular industry can keep lining their pockets.

Oh dear. Getting all upset now :eek:
 
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've read forums where massage therapists are telling each other how to get away with charging insurance companies a fortune. So insurance companies are forced to pay out easily 3 times the reasonable amount. They have to make up that difference somehow. They do it by charging more in other areas, just so they don't have to close shop.

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

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.


"It appears to me that the affordable health care act will force health insurance companies to lose more money." Lose more money? I'm sorry, Dainty, that's as far as I could read.
 
This kind of thread keeps coming up. We lose good people from the forum. Hate to see it again.

I've not participated in any of the other threads that looked politically touchy, since I voluntarily try to avoid threads I think may cause me stress, but it seems like people on this thread are separating the question of our health system (in all it's glory) from political positions. For example I disagree with Dainty but she's talking about health care and her concerns about the system and changing it, which are totally valid, and I for one am happy she shared them. And I hope my comments are similar, emotionally charged perhaps, but not at all focused on party affiliation or even right/left leanings. Just specific experiences, concerns and hopes about healthcare. (And I feel like I should clarify my "getting upset now" comment was because I was thinking about my parents and the insurance companies, not because of anything anyone on the thread posted!)

I guess I don't understand why this kind of discussion would drive people away from the forum?
 
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
 
"It appears to me that the affordable health care act will force health insurance companies to lose more money." Lose more money? I'm sorry, Dainty, that's as far as I could read.

I'm sorry. I had a brainfog moment. "Earn less money" was hte proper phrasing, as Valentijn already pointed out and I acknowledged.

I do hope you can bring yourself to forgive this error of words.
 
Insurance companies are mostly a HUGE SCAM. They are all about profiteering at the expense of consumers. There will have to be regulations placed on them, to prevent them from getting away with murder (literally) in the future.

My friend's daughter worked in France last summer, and while there she became ill with what turned out to be appendicitis. Her appendectomy in France cost $3000... which is the same price it would have been in Germany. What would the same surgery cost here in the US....? Anybody know? When my friend looked into it, she was told it would be around $28,000. :eek:

Health costs in this country are insane, and that's due to the FOR PROFIT insurance business. Obamacare was a start, but it's not enough. What we really need is a single payer system, with a private insurance option for those who want it and can afford it.

Actually, I think it's because health insurance companies have a monopoly on the industry right now.

Lets take food, for example. Lots of businesses sell or provide food as a for profit endever. They make money off of it. What keeps them from overinflating the prices? Why is food affordable? Is it regulation? No, it's competition. If grocery store X charges noticeably more than grocery store Y for the same product then people will go to grocery store Y instead.

Yes, what they're getting away with is a scam. Think regulations will stop them from being scammers? Stop them from finding a way to earn a boatload of money? There's still plenty of other areas where they can raise prices.

Healthy competition, somehow, someway, would bring down the price. You say we need a "private insurance option for those who can afford it" - yet you've called it a scam. So scams should be reserved for those who can afford them? Gotta say I don't agree with that reasoning.
 
Under the Affordable Care Act (aka Obamacare) on January 1, 2013 Medicaid reimbursements for primary care services will increase to match Medicare rates. Hopefully this will be an incentive for more doctors to take on Medicaid patients.
 
You say we need a "private insurance option for those who can afford it" - yet you've called it a scam. So scams should be reserved for those who can afford them? Gotta say I don't agree with that reasoning.

If rich people with plenty of money to spare are not happy with a single payer system, then yes, I think they should have an option to spend as much of their millions on insurance as they choose. The rest of us should have a single payer system to fall back on when we need it. Most western industrialized countries in the world have this. And we would have had it too if certain elements in our government hadn't put up a huge resistance to making that happen.

I'd rather have single payer healthcare system than a prolonged war in Iraq and Afghanistan. Like it or not, that's where our billions went. It's all about budget and priorities.

Hopefully, we can get on the right track in the next 4 years, and make the PEOPLE of this country the priority,

That's my reasoning.
 
Under the Affordable Care Act (aka Obamacare) on January 1, 2013 Medicaid reimbursements for primary care services will increase to match Medicare rates. Hopefully this will be an incentive for more doctors to take on Medicaid patients.

That's good news. .Since alot of the poor and uninsured will now be under Medicare it will certainly create a huge new pool of patients. It'll be interesting to see where they will go particularly since I will likely be in that pool. That would save me and my family about $2500 a year....
 
In reply to Dainty: The answer is simple and complicated, and of course political too.

But simple, in that more money obviously needs to be allocated to Medicaid (I didn't realize until after posting that the Obama plan is designed to increase payments to doctors). It's complicated, because of the politics involved, and the stereotype that most medicaid patients are "using" the system in order to not have to buy insurance. It would also help big time if medicaid and other docs would actively promote preventative care, rather than ignoring patients complaints until they need a heart bypass, which we all know costs more than $50.

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.

I apologize if I'm coming off as ranting and/or if I've hijacked the thread.
 
Healthy competition, somehow, someway, would bring down the price. You say we need a "private insurance option for those who can afford it" - yet you've called it a scam. So scams should be reserved for those who can afford them? Gotta say I don't agree with that reasoning.

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.
 
I realise I'm a Brit so don't have a US perspective on this but I'd love to see this thread discussing how we can make the most of Obama having been re-elected. Does this present us with new opportunities for research funding? What should we be doing to get it?

I think it allows us the opportunity to capitalize on what Bob and Courtney Miller produced with the Obama Promise. That will take some work....but that was a powerful statement and it could be very helpful...We should assess the state of chronic fatigue syndrome at the NIH and determine if its changed at some point...maybe six months; ie; has CFS priority been elevated? and if not sufficiently then back to Pres Obama we go.

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....
 
If rich people with plenty of money to spare are not happy with a single payer system, then yes, I think they should have an option to spend as much of their millions on insurance as they choose. The rest of us should have a single payer system to fall back on when we need it. Most western industrialized countries in the world have this. And we would have had it too if certain elements in our government hadn't put up a huge resistance to making that happen.

And why do you think that only the rich will ever find themselves in need of treatment not covered by this "single payer system"?
 
Interesting article thanks, Cort.



Could anyone clarify the above quote, please?

Is it a reference to the income levels that qualify for subsidies, or the amount of subsidies available to each family? (I have no idea how much health care costs in the US.)
I'm actually not sure which might get hacked; I suppose it could be either one.
 
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.

Well in order to work it has to actually happen, not just be theoretically possible. ;)

But I know what you mean. 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.