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Using Antiretrovirals for Chronic Fatigue Syndrome Has Sparked Controversy

September 23, 2011

In an age where there are almost 8,800 HIV-positive Americans anxiously on the AIDS Drug Assistance Program waiting list, new reports are coming out that HIV medications are being used by, and experimented on, people with chronic fatigue syndrome.

Understandably, this development has created an uproar with all eyes focused on Gilead Sciences, the makers of Viread, the HIV drug being used to treat chronic fatigue syndrome. The New York Times reported:

... The Food and Drug Administration approved Viread to treat chronic hepatitis B in adults in 2008. And after a 2009 study linked chronic fatigue syndrome -- a mysterious tiredness believed to afflict a million Americans -- to a retrovirus called XMRV, there was hope that H.I.V. drugs might also work against that ailment.

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See Also
HIV Medications: When to Start and What to Take -- A Guide From
More on HIV Medications

Reader Comments:

Comment by: Henry (California) Thu., Sep. 29, 2011 at 1:23 am UTC
Other medical uses for these drugs is okay. There are tests on existing drugs of all types going on to see if they work for HIV. Do you object?
As far as government funding, note that Germany and others can legislate the cost of a drug and the producing company won't object, because they know they can make up the difference in the US. And the companies are willing to spend the millions to test new drugs because they know the US market will reward them. Take the US market away, and effective funding dies. And so will the new drugs.
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Comment by: Carlos Sun., Oct. 2, 2011 at 2:08 am UTC
Other medical uses for LEGITIMATE medical needs is ok. I'm not opposed to drug companies being rewarded for their risk and work. Applications for controversial, poorly understood and possibly imaginary diseases just before patent expirations is a flagrant abuse of the patent law system and should be understood as such. If these people suddenly started finding that AZT cured breast cancer or isentress could treat Lupus, I wouldn't bat an eye. Its when when we start "discovering" that Truvada can prevent HIV infection, proscar can slow baldness or Sustiva counteracts restless leg syndrome that the entire sitaution becomes offensive.

As for legislating the cost of drugs, again, my point stands; we do not live in an environment that such a thing is feasible, but we SHOULD DEMAND the drug companies to play by the spirit of the rules.
Comment by: Henry (California) Mon., Oct. 3, 2011 at 5:32 pm UTC
Carlos, we are in full agreement.
I am not as clear on patent law as I should be, but it should work in a way that
1) New uses for old drugs do not lengthen patent protection.
2) New formulations of old drugs do not protect the old formulation from patent expiration, but do protect the new formulation.

There is, of course, the problem: For a new use it would be more difficult for a company to recoup the cost of testing to FDA standards. We may end up with a lot of "off label" uses based on rumor and hope, like we now have on most supplements.

Comment by: Carlos (Bakersfield) Tue., Sep. 27, 2011 at 10:40 pm UTC
Peter, in a perfect world, I would agree with you. Antiretrovirals would be free, and we would fund kitten farms and gumdrop palaces instead of middle eastern dictators. Sadly, we don't live in a perfect world. Even moderate reform to the healthcare system has proven almost impossible, and lives hang in the balance. I humbly propose that it would be easier, more effective and thus more humane to abide by the rules and spirit of the law-rather than radically alter the system. We can't fix American Healthcare. Its just not going to happen. There are too many people with too much money fighting it tooth and nail. We CAN demand that the pharmaceutical industry play by the rules already in place. We can point out flagrant abuses of the system, and lead people to understand what is happening. God willing, that would hold more political resonance than the pipe dream of socialized medicine. Ultimately, we would see many ARVs going off patent with entire regimes available. To remain relevant, "big pharma" would be forced to innovate rather than rebrand and everyone---here and abroad---could have access to what they need. From there, if some prostitutes in san francisco can bamboozle their doctors into prescribing Atripla off label as a prophylactic or whatever-more power to them.
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Comment by: Peter Kronenberg (Washington, DC) Tue., Sep. 27, 2011 at 1:28 pm UTC
I'm more concerned about bad medicine than about shortages of antivirals. ADAP waiting lists don't exist because the drugs are in short supply. The drugs are very expensive to develop but comparatively cheap to manufacture, so supply can always ramp up to meet demand. ADAP waiting lists exist the public healthcare system is unfair and creates artificial shortages. We need to fix the care system, especially for the poor, and creating new artifical shortages elsewhere isn't going to do that.
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Comment by: michael (los angeles) Tue., Sep. 27, 2011 at 6:10 am UTC
ah, gosh those darn patents......see if it weren't for those patents, this wouldn't be such a big generic meds for five dollars.......

still begs a moral issue, should people profit from suffering?
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Comment by: Carlos (Bakersfield) Tue., Sep. 27, 2011 at 3:37 am UTC
I don't see what all the fuss is about. No one seems to mind that were tossing out truvada as a bareback party pill while people sit and wait. We might as well give EVERYONE hiv meds except those who are infected with hiv. Hey, what next, maybe some isentress for fibromyalgia? Oh, wait, that's not approaching a patent expiration. How about Emtriva then?
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Comment by: Nick (Roebling, NJ) Tue., Sep. 27, 2011 at 2:00 am UTC
They have to do something for those of us with CFS. They said it was caused by the EBV virus, Valtrex in high doses doesn't seem to work. CFS is serious and we need a treatment option soon.
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Comment by: KAL (Raleigh) Mon., Sep. 26, 2011 at 2:39 pm UTC
The problem here is no numbers are given. Are HIV drugs given to 10 CFS patients or 10 million patients thus causing a shortage. How many AIDS patients are going without? Six, 1,000? The lack of factual information in this otherwise well written piece is problematic. The issue was address in the New York Times in part by HIV and CFS research and clinician Dr. Nancy Klimas who said, "But I hope you are not saying that C.F.S. patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.

I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it."

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Comment by: Anonymous Mon., Sep. 26, 2011 at 5:11 am UTC
Judging from the comments, there seems to be a misunderstanding about the cause of the ADAP waiting list.

The waiting list isn't caused by a shortage of mediciations in the USA, but rather the fact that the US government has frozen (or in some cases cut!) funding for HIV care.

The fact that these studies are happening has no impact at all on the ADAP waiting lists.
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Comment by: carol (westbrook, ct) Sun., Sep. 25, 2011 at 8:39 am UTC
How dare you cold idiots thousands living with hiv and aids need their medications research has provided for them many cannot afford them and struggle financially to pay. You want to create a shortage of these life saving mess to treat a fatigue syndrome. That was not the intent of scientists when their hard work developed the drugs specifically formulated for hiv and aids illness. How dare you create a shortage carol. Stop this abomination. Provide hiv and aids human beings with their mess and everyone who care about their future speak out against any other use of hiv or aids drugs specifically for this group of people. Carol.
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Comment by: Anonymous Sun., Sep. 25, 2011 at 8:29 am UTC
What is wrong with this. Human beings whobattle with the hiv and those with aids shdbe the only people receivi.g the medications which a treat their illness many cannot afford their mess others struggle to pay for them. Don't provide the
To someone who does have hiv or aids. Have concern and compassion.

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Comment by: Quay (New York City) Sat., Sep. 24, 2011 at 4:13 pm UTC
The fact that there are people on waiting lists for Viread and that it might work for other illnesses are two very different issues. No one objected when research was started for Viread for Hep B. I guess that was because many people with HIV also have Hep B and can benefit from it. Like me. If Viread has the potential to treat other illnesses it should be explored.
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Comment by: Zoey (San Francisco) Sat., Sep. 24, 2011 at 12:20 pm UTC
Of course someone on the body would say "of course". This is the only HIV site in the world dedicated to people who don't have HIV. Try wasting away from aids or struggling with an OI sometime and we will see how "debilitating" these people think their imaginary CFS is.
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Comment by: Juan Sat., Sep. 24, 2011 at 1:25 am UTC
I think the real question is... why does there have to be a waiting list for getting treatment in one of the most developed nations in the world? I live in a Latin American country, deemed as part of the "third world", and all HIV health care and HIV meds are available at no cost to everyone, including people who are not citizens. If our country is able to afford that, why can't you? You need to ask your political leaders to take a stand on this and provide FREE CARE for everyone with HIV like most developed nations do!
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Comment by: S. Weissman (New York, NY) Fri., Sep. 23, 2011 at 4:54 pm UTC
YES! CFS is a debilitating disease. It also has no cure.
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