SECOND REVISION OF THE KETAMINE LETTER

https://www.change.org/petitions/one-face-behind-rsdcrps-petition-medicare-for-ketamine-for-refractory-or-aggressive-rsd 

APPROVE KETAMINE FOR REFRACTORY RSD

Greetings,
I just signed the following petition addressed to: Medicare.

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http://www.youtube.com/watch?v=7GHIQQQcROs

APPROVE KETAMINE FOR REFRACTORY RSD

Ketamine is growing in popularity, see this link for more information on the success that even the FDA has admitted to. Problem is the explosive growth of numbers of patients ending up on Medicare after use of their previous insurance is exhausted. Regular insurances, that's about $2Million in care before it runs out.

Previously contraversial, it is proving less so:

http://rsdfoundation.org/en/Ketamine_Treatment.html

KETAMINE SAVES LIVES AND MONEY!!!!!

COST OF KETAMINE
• A 3-4 day ketamine infusion, on average is about $2-3,000 per day-in hospital;
• at an outpatient or tertiary site, about $2,000 per day.
• One course of 3 day treatment; of which most patients undergo about 5-10 treatments would cost about $15-20,000

(the cost of the surgery, by the way that triggered my disorder WAS $17,500).


If that puts someone who requires well over (keeping in mind, my care for home health is not included as it is yet to be submitted) an average of $150,000/year for life, cost for a series of short-term ketamine treatment, costing in the end maybe $50,000-80,000 offers a shot at a life without the screaming agony of RSD which has even (though not crossed my own mind) driven some to suicide—as children.

Why is ketamine so critical?

Approximately 1.5 million Americans suffer from CRPS/RSD in any given year.

Different kinds of pain in RSD
• In the beginning, the pain of RSD/CRPS is Sympathetically Mediated Pain.
• Every time there is a 3 month delay in the start of treatments (first line) like spinal blocks, the pain becomes more of what is called Independently Mediated Pain (this means it originates no longer in the spinal nerves; but the brain itself.
o 3 months = 25% IMP & 75% SMP (still good chance at recovery with topical ointments, nerve blocks, etc
o 6 months = 50% IMP & 50% SMP (multi-modal therapies must be used)
o 9 months = 75% IMP & 25% SMP
o By 12 months, rule of thumb, almost 100% of RSD/CRPS pain is IMP.

http://www.rsdhope.org/imp--smp--crps.html

My treatment began in the 11th month, when about 92% of pain is IMP and it began with spinal block--as that is what MEDICARE has approved--not things that work for IMP (and far more difficult to treat=aka, becoming “refractory")….”
• And yet, I must be submitted to only Medicare approved treatments for RSD/CRPS
• Which means I did get to “skip to” spinal blocks. They provide about 3 days relief thus far.

My own case in point:
• Over $5K in medications this year already.
• Grand total of over $15K in RSD CARE ALONE.since January 1st of 2012.
• As of the END of Febuary, and my home health hasn't submitted their bill; let's safely say so far my care has reached $10,000/month--and that has been because I have fought like hell to stay at HOME.
• Given now--I have to have a porta-cath inserted before aany
• A hospital may charge $2,000 just to place the catheter in the patient in day surgery.
o This is not incluing fees from the surgeon for the initial consult (probably about $500 for the initial consult). No idea what fees are to actually place the port.

BACK TO TPN:
• Reasons I need the TPN are the following (the symptoms of the RSD being also a portion of it as well, adding to the expense--even though study review after review has repeatedly showed that patients do better at home in recovery from just about anything
Reasons in my medical history that I would likely need TPN:
• Malabsorption
• Surgery
• Reflux
• Malnutrition
• Chronic adhesive obstruction
Grand total in charges are (without TPN): (Roughly, including the $2,000 for each spinal block) are about $10,000/month
Add the TPN and take it up to $16,000 +/month

For a time at least, average cost of home based TPN so that my body can heal from a BLISTER (which is what necessitated the initial home health care when an inept ER doctor “lanced” it and removed the only barrier my compromised body had between the underlying tissue and “the outside world” and now, due to my pain levels, an astronomical weight loss has taken hold and nutritional support is likely to be. Makes me wonder how much that ER doc would have saved in taxpayer dollars by leaving it alone (the usual standard of care—home health services would not have needed to be as intensive—of that I have little doubt)
.
Not to mention my Social Security Payments

Forget about the rest of my medical history for a time, here, but really, what is the cost to my life-when it’s all
• medical supplies
• doctor’s offices
• 24/7 being in constant agonizing pain.

Then someone hands me a pen an asks me to sign the paperwork to be a “Full Code.” Don’t pretend you know what that means.
• Why would I want CPR when my life is spinal blocks to stop the pain—for maybe 3 days, then it rapidly wears off?
• And I am again left in agonizing pain?
• I can’t amputate—not that anyone would do it because it spreads the RSD.
• But if infection in my foot hasn’t gotten the care I insisted upon???
• I did it via a public blog—one that got hits as far as Russia, Italy, Alaska, and so forth.
• When those stats were forwarded, it was then I got home health. I went public on You Tube—only to have to pull everything and privatize it because people saying that I am crazy—that I need to “suck it up.” I took the high road.
• To have consulted my Primary Care doctor for “RSD” an he submits the claim as “Acute reaction to Stress.”

I want to be a full code for that? To be honest, no..

And maybe would allow someone in my condition, at 37, a chance of maybe even returning to work, should the restorative therapies be initiated ASAP, the cost of that is a bargain since I was last employed bias a Registered nurse, ketamine is a risk maybe, but to me—and to Medicare, Mr. President, it’s a bargain—of course, we would need you to meet some of us.

Cost without ketamine is about $150,000/year for life.

I am 37. If my body tolerates this for even 20 years (unlikely),
it will cost Medicare (and face it, eventually Medicaid, over $3 million for maybe 20 years of tube feedings, spinal blocks, growingly expensive medications, procedures, home care-that becomes less likely

As friends and family who help care for the person, fall away from their lives—through understandable exhaustion (physical, emotionally stressful and financial issues), or death of parents who watch their child suffer year after year with no end in sight—for most parents—the pain of a child with RSD is unthinkable.

And children get RSD too. It knows NO BOUNDARIES. Sir, what if a tick bite resulted in agonizing pain—for life—of RSD/CRPS??? Is there not anything you would do to alleviate their suffering? What if you have nothing??? Your choices are:
• Place them in long-term care and walk away
• Pay someone else to watch them and walk away
• Do anything you can to change the existing rules—be it they apply to you, or a family member
• Pay the costs yourself.

Have you ever awakened screaming because when filling out paperwork, a pen slipped underneath you and caused such a bruise that the pain kept you from even being able to urinate for 2-3 hours. What is the cost of supporting someone lifetime on Medicare with RSD? Roughly what mine is.


EFFECTIVENESS OF KETAMINE:
Case notes of 33 patients whose CRPS pain was treated by the inpatient administration of a continuous subanesthetic intravenous infusion of ketamine were reviewed at Mackay Base Hospital, Queensland, Australia.

A total of 33 patients with diagnoses of CRPS who had undergone ketamine treatment at least once were identified.
Due to relapse, 12 of 33 patients received a second course of therapy, two of 33 patients received a third.
• There was complete pain relief in 25 (76%),
• partial relief in six (18%),
• no relief in two (6%) patients.

The degree of relief obtained following repeat therapy (N=12) appeared even better, as all 12 patients who received second courses of treatment experienced complete relief of their CRPS pain. The duration of relief was also impressive, as was the difference between the duration of relief obtained after the first and after the second courses of therapy. In this respect, following the first course of therapy,
• 54% of 33 individuals remained pain free for 3 months or more and
• 31% remained pain free for 6 months or more.

^ a b Goldberg ME, Domsky R, Scaringe D, et al. (April 2005). "Multi-day low dose ketamine infusion for the treatment of complex regional pain syndrome". Pain Physician 8 (2): 175–9. PMID 16850072.

:
OTHER OPTIONS FOR CRPS/RSD?
A spinal, or even a stellate ganglion bloock is going to help this? Or a spinal stimulator in the "new generations? Including the trial and implantation? Approximately $60,000 for the implantation! "Uncomplicated" maintenance of a SCS is about $7,000/ year. Complications include:
• Bleeding
• Allergic reactions
• Paralysis (PERMANENT = VERY costly to patient as well as Medicare)
• Numbness (potentially permanent)
• Consistent pain around the implant area
• Battery failure or leakage
• Post surgical "soreness"
• Tolerance to stimulation secondary to scar formation over time.
• Malfunction of the device
• INFECTION in someone who is already potentially medically/nutritionally compromised
• "Unsatisfactory" placement of leads
This many complications--"uncomplicated seemma unlikely.  But it's being shoved at me--and hard.

Because an intrathecal pump = narcotic pain management.

Having looked at this option, and being a MRSA carrierl if this introduces MRSA to my spinal cord? I am in trouble, if not just plain dead. Spinal stimulator, I think for me, ketamine, although with it's risks-would be safer--for ME. Not available.

Sorry (often), ketamine is "non-formulary" or I get what I call "assistance with being priced out and I cannot even get someone to tell me how much even topical gel of ketamine/

COSTLY TO MY FAMILY & FRIENDS IF I END UP DEAD, TOO.

Waiting for procedures you pray will give you a chance even for a few days of SOME reprieve of YEARS of unrelenting pain. You can't go to the ER-why? Because the nurse checking your pulse hurts; THEN…they want to squeeze your arm for a blood pressure—for those who have RSD “full-body” I can’t imagine, as I am fortunate enough that the Stellate Ganglion Block was effective on my “upward spread, and the dystonic spasm of my hands and forearms (see video)

The ER doctors exam throws you into a cresendo of pain that many (not all) cannot comprehend.

Let your mind go back to your hernia surgery—or appendectomy, knee surgey—maybe to the last time you broke a bone; just go back to the most painful moment…. Get a calculator—to not multiply times ten, but a hundred

You are getting close to RSD. Many pain doctors do not use the 1-10 scale to rank the pain of RSD/CRPS. Try the McGill Pain Index where RSD is at the top. Want to fully comprehend it?

www.eorthopod.com/node/10966

ONE VERSION OF THE McGILL PAIN INDEX  

RSD, aka, "CAUSALGIA", AKA CRPS IS 42-NOTHING GOES HIGHER YET



This is how RSD feels:
Someone has taken my leg of the most painful moment right after my hip surgery, and they poured my leg with a lighter fluid, and dropped a match. But realizing the accident, then in an effort to put the flames out, they grabbed a BUCKET OF HYDROCHLORIC acid on you instead of water, then your pain explodes like nothing you’ve known—and Ladies of Congress, it IS worse than childbirth, and you can’t eat, half the time keeping your medicine down is what you focus on. That becomes your food. The acid reflux requires four or more doses of Priosec—now your problems begin. Right now one dose of the medication approved by my Medicare plan for acid reflux is $1,200/year. We could add that to the tab if we want to “Nickel-dime us all to death.”

Will what I need be covered by Medicare or Medicare Part D?
Many times, such as the diazepam I need not for anxiety, FOR MUSCLE SPASMS THAT ROOT YOU WHERE YOU STAND—you have $5 and the bill is $24.

You often walk away with maybe half of what you need! And when completely dependent on Medicare?

RSD-appropriate care is a thing of the past.

You are stuck on Social Security; at the mercy—of the system.


Your "supportive friends" drift away..one by one. The only ones are at your fingertips-the few hours a day you can stand the light o the computer screen. You have one hand flush pink and warm to the touch, and in briefly touching the other, it feels like ice, is white as snow-but feels like fire. Ketamine treatments in other countries has been a cornerstone of treatment.

Even in the US; as usual the "Have's" have often got access to some FORM of ketamine. It isn't for everyone, not all are canidates, but even a year of RSD treatment is expensive when going by current protocol approved by medicare. Why not give us a shot, us "have nots" the same shot-equal access to this potentially life changing treatment....Sign this petition, please, and DEMAND as a US citizen, and a REGISTERED VOTER; that mr. obama and our congress give us the equal access--rather than forcing us to sell every last possession. I am not asking for Coma treatments. And let's point out a lifetime of remission from Ketamine treatment is cheaper than expensive Spinal Stimulators, and jabbing needles into the spines of those already in compromised health. Bring RSD/CRPS patients out of the dark into the LIGHT--Please: give us a chance, we have suffered enough,

To families and friends:
http://www.rsdhope.org/to-the-families--friends-of-rsd-patients.html

What Many Pain and/or RSD/CRPS patients would like people to know:
http://www.rsdhope.org/what-would-you-like-your-family-to-know-about-crps.html

EQUAL FOR THE "HAVE NOTS!!!!"

It's one more CHANCE we could have at not A LIFE, but LIFE.
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Sincerely,

[Your name]