APPROVE KETAMINE FOR REFRACTORY RSD
Greetings,
I just signed the following petition addressed to: Medicare.
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(see bottom)
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 controversial, it is proving less so:
http://rsdfoundation.org/en/Ketamine_Treatment.html
KETAMINE SAVES LIVES AND MONEY!!!!!
APPROXIMATE COST OF KETAMINE IN DOLLARS AND CENTS:
• 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.
Or I could get ketamine and WORK, AND BE MAKING $60,000-80,000 AND be PAYING INTO the system.
TELL THE GRIEVING PARENTS WHAT THEIR CHILD'S LIFE WAS WORTH, THAT YOU, MR. PRESIDENT, CAN'T SIGN A PIECE OF PAPER, REQUIRING MEDICARE, SAY TO BE COVERED IN ALL 50 STATES???
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.
3 months = 25% IMP & 75% SMP (still good chance at recovery with topical ointments, nerve blocks, etc.
6 months = 50% IMP & 50% SMP (multi-modal therapies must be used)
9 months = 75% IMP & 25% SMP
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 AGAIN be submitted to only Medicare approved treatments for RSD/CRPS THAT ARE "ALLOWABLE BY MEDICARE for WASHINGTON STATE.
Which means I did get to “skip to” spinal blocks. They provide about 3 days relief thus far. And I have not had one, and WILL NOT GET ANOTHER 3 DAYS of relief--which looks like an oasis at this point-UNTIL I HAVE A SURGICALLY IMPLANTED PORTACATH. I've had so much agony in my medical history; I HAVE NO IV ACCESS.
My RSD Specialist--who does this day in and day out, in terms of starting a simple IV, took 3 hours and countless sticks before a butterfly needle was used when at least a 20-guage-21-guage needle be used in case of emergency. WE WERE FORTUNATE. And I am used to being stuck: so the problem? Each stick has a very good shot at spreading the disease from my right leg to left arm, or if as is often the case, when done improperly--it can-a simple needle stick, cause, full-body RSD, which by definition is treatment-refractory.
A hospital may charge $2,000 just to place the catheter in the patient in day surgery.
This is not including 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?
And I need TPN now.
REASONS TO NEED 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
THE BOTTOM LINE AT THE CURRENT TRAP:
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 OR $192,000/year.
Now do you see how so many end up on some form of public assistance? Most insurances have a lifetime cap of $2 mllion. At $192,000/year, it will provide respectable ca
For a time at least, average cost of home based TPN so that my body can heal.
• Have a prayer of fending off infection with a portacath
• Give me the energy level to be able to shower without assistance
• Build up a level of health where my body could withstand ketamine
At this rate, maybe I will live to see 50, maybe not-but unlikely.
o I make the most of it.
o BUT BECAUSE I LIVE IN WASHINGTON, NOT IN CALIFORNIA OR FLORIDA? EXCUSE ME, BUT THIS COUNTRY WAS BUILT ON EQUALITY.
o EQUALITY IN ALL 50 STATES.
.
I MUST FIND A NEW PRIMARY PHYSICIAN, BUT WHAT’S WRONG?
No physician wants to take me on as a NEW PATIENT because I am what is known as a "PROBLEM/VERY COMPLEX PATIENT."
Anywhere else I TURN (aka, away from the doctor who ignored what was "classic RSD Symptoms" which forced MY hand to step out of their system and go to a neurologist I KNEW could make the diagnosis.
By the time my chart landed (he is ONE of THREE doctors I know of that don't put a COMPUTER between them and their patients) on the desk of and their patients. Note the lack of COMPUTER chartng.
Right now, the only 3 I would recommend to anyone with RSD. HOW MANY PCP’S KNOW ANYTHNG ABOUT RSD? ONE WRONG MOVE practically, and you can damage them permanently—leavin
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 KETAMINE is a bargain since I was last employed as a Registered nurse,
Ketamine is a risk maybe, but numbers are piling up so that MANY other states, such as California and Florida allow Medicare reimbursement-NOT WASHINGTON.
But if the
• RSDSA
• RSD Hope Foundation
• RSD Foundaton,
Would all support ketamine in cases like mine, if my doctor recomends it as AN OPTION that MAY BE APPRORPRIATE-SHOULD THIS NOT BE AVAILABLE NO MATTER WHAT STATE I LIVE IN, WITHOUT MY HAVING TO TRAVEL OUT OF STATE WHERE
80% IS COVERED
20% IS ON MY LAP
WHEN MY HARD WORK FROM AGES 15 UNTIL MY LAST EMPLOYMENT IN WHEN my poor health forced me to finally give up a career that:
• I loved.
• Allowed me to be of SERVCE TO OTHERS the way I WANTED TO.
• Yes, it did pay well
• PLUS I spent 5 years in University WORKING and paying taxes and DOLLARS INTO instead of sucking dollars out
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Just ask yourself this, Mr. President, and Ladies and Gentlemen of Congress and the Senate:
Would you not want the same care in your state, if something happened to you, and you were not around to make sure that your CHILD, WIFE, HUSBAND, PARTNER, ETC, becane unable to work, not able to afford housing without a job of some kind, a CHANCE AT A LFETIME OF FREEDOM BE AVALABLE IN ALL 50 STATES?
DON'T ONLY MAKE IT AVAILABLE WHERE DOCTORS ARE ABLE TO, MAKE IT SO THAT DOCTORS ARE ABLE TO PROVIDE KETAMINE IN ALL 50 STATES.
$3.9 million PER patient. With how many of those 1.5 million with access to ketamine IF needed?
Sounds expensive to me to say “Aw, it’s only a small percentage of people, it’s gonna come out in the wash!”
Come and meet us:
Cost without ketamine is about $150,000-200,000/year for life.
Or $150K is a ONE TIME deal.
TPN and tube feeds or jobs with benefits, and productiveness to society-but equal opportunity MUST exist wthin healthcare
THIS IS OUR LIVES.
1.5 MILLION AMERICANS
or is it ONLY 1.5 MILLION AMERICANS
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? I have full body RSD!
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 everything from bleeding, to spinal headache, leakage o flud, increased pain at the site—and as well as an implant pain, also—to which is:o Spread
o Infection
o Acute flare-up of the disorder, potentially causng serious seizures even:
This many complications--"uncomplicated” seems unlikely.
But it's being shoved at me--and hard. I don't want the stimuator--but every pain patient's worry is two-fold:
- My doc will dump me if I say no.
- The peppering with questions is a turn-off
RSD-appropriate care is a thing of the past when the same care is not available in EVERY STATE......AND KETAMINE IS NOT EITHER.
WE DEMAND EQUAL HEALTHCARE IN EVERY STATE. IT SHOULD BE EQUAL ACROSS THE BORDER!!!!
...Sign this petition, please, and DEMAND as a US citizen, and a REGISTERED VOTER and (even on disability in some form, we all do a TAXPAYER); that President Obama and our Congress/Senate give us EQUAL ACCESS IN ALL FIFTY STATES NO MATTER WHAT!!!--rather than forcing us to sell every last possession.
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:
What Many Pain and/or RSD/CRPS patients would like people to know:
EQUAL FOR THE "HAVE NOTS!!!!"
EQUAL FROM STATE TO STATE. IN ALL STATES—NO MATTER WHAT—NO EXCEPTIONS: IF MY DOCTOR SAYS I NEED KETAMNE, THAN WHAT---KETAMINE.
It's one more CHANCE we could have at not A LIFE, but LIFE
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