Texas Has Money But Won't Spend It on Schools or Health Care

Every two years, Texas lawmakers go through all kinds of shenanigans, mostly to avoid passing meaningful legislation. Last session, they got distracted by such stupidity as making it a crime for airport security to frisk too close to the "forbidden triangle." Remember "Don't touch my junk?"

Texas passed a voter I.D. law making it harder for people to vote despite of the fact that only a handful of people in the whole state were even accused of trying to vote as someone else or vote more than once. This law was a pre-election gift at a time when a record number of minorities were expected to cast ballots. If he was hoping to hurt Obama's chances, Perry failed again.

The 2010-11 session's most grievous wrong was looking at the $27 billion deficit and deciding public education would have to eat $5.4 billion of it. Texas lawmakers put $48 million into the state's only jobs training bill, to get community colleges to help businesses who promised to create jobs if workers were trained. Sounds good until you consider these funds got laid on thick while public schools took a whipping for so much more.

Perry Calls a Special Session

Nobody wanted to support a budget like this and the governor needed to stall for time until he could get  lined up for another shot at bringing Obama down. So he called a special session. In Texas only the governor can do that and he can only hold the session open in 30-day increments. It adds considerably to the budget and lawmakers want to go home. Caterers, hoteliers and cab drivers love it.

The public wanted education money to be restored from Texas' "rainy day fund," but it was not to be. Perry was holding out to join other states in their wrong-headed attempt to sink Obamacare. He got the votes for a measure that everyone knows got shot down by the Supreme Court. Curses, foiled again.

In the way of a bone to public education, Perry strong-armed online sellers like Amazon, making them collect and pay state sales tax. But who knows if this money made it to the classroom? Now Texas boasts an $8.8 billion surplus, according to The Austin American-Statesman 1/15/13.

Sounds good but the two-year proposed budget ($89 billion) is short of what agencies want ($96 billion.) Plus, $6.8 billion is already promised to close holes in the 2012-13 budget. School funding will not be 100% restored and health care is a big question mark. A measly 1.1 percent increase is likely for schools.

Texas' rainy day fund is up to nearly $12 billion now but there are no plans to touch it. It did get touched during the last session but only to restore some "holes" so the state could say they passed a balanced budget.

More Texans - Less Support

Perry says he's not going for the Fed's offer of money for a health care exchange to cover high risk and/or low-income patients. If you live in Texas and have carcinoid, chances are pretty good you will fall in one or the other of these categories soon.

Texas has grown by 1.6 million residents since the last lawmaking session and like everywhere else in the country, a record number of Texans are retirement age. So, does anyone have a plan for helping these folks who have already seen their drugs cut back on Medicare and the cost of co-pays and premiums jump?

Help is NOT on the way. The GOP is still making a case for reducing programs like Social Security, Medicare and Medicaid.

In Case You Were Wondering

Perry still lives in an Austin mansion, where rent ($8,500 per month) and other living expenses are covered by taxpayer funds. KXAN-TV in Austin reckons the Perry preservation fund has topped $750K since Perry was elected. I'm not sure he ever lived in the recently restored governor's mansion in downtown Austin. The restoration process began shortly after he became governor as George W. Bush moved to the White House.

Then a shadowy figure torched the place before the restoration was complete. Nobody's been charged in the arson but an additional $22 million was appropriated by the legislature to repair the damage and continue restoration.

I see there's to be an open house at the governor's mansion, soon. I wonder if the Perry's will relocate. Their kids are grown so being near good schools is not an issue.

 

Creative Disease Management 101

When one has a disease and the entity which one depends on suddenly cuts the needed treatments in half, one has to become adept at adapting to managing the symptoms.

Carcinoid, as all how have it all know, is all about the symptoms.

First and foremost, how do we take care of the numerous and explosive bowel movement problem.  Well, morphine is pretty good at this, and if one is not careful, one can become constipated if one is not careful.  Well, I reached the verge of this and discovered there are numerous self treatments to make sure I never feel like a torpedo is in the tube, but it's unable to fire.  I won't go into the details, but at least I've found a way to half way relieve that.  Only problem with this is now my wife won't let me drive and everyone thinks that I'm really funny.  I walk about feeling kind of goofy, and my wife refuses to allow me to go out in public since I went out the other day in my house shoes and walked around town visiting with everyone for a few hours.  Luckily, I can blame that on the Morphine.

Second, fortunately there is a short acting version of the drug I need, and it costs like $900 a bottle.  I am trying to ride the very edge of what is needed to keep things under control, and I still feel like I'm shooting up every time I turn around.  Usually, I have to give myself a shot when I flush, now I'm having to take it in a more regimented fashion.  I have a small supply, but when that runs out I'm going to fall into the donut hole very quickly.  The problem with the part D donut hole is you fall in but climbing out is very difficult.

Let's add to this another difficulty.  Seem I went and was tested for a certain kind of disorder which can be controlled with medication.  Seems like when I was tested, usually one is told "we think you have it" or "It's highly likely you have it" I was told I broke the machine.  So now I've had to start on a new medication which is causing some new and interesting symptoms on top of everything else I have going on.  However, the medication is working and I'm finding life is a bit easier because I've been able to function at a higher level and actually get things accomplished, something I've not been good at seems like forever.

I am now in a holding pattern.  My Senators all have signed releases and the gory details, as well as my Congressman.  I am waking every day praying we get this taken care of so I can get back to feeling just sick instead of sick with all this other stuff going on.  I am just so mad at this system.  I'm mad because I trusted the system to not change, and I feel like the rug was pulled right out from under me.  I'm all for saving the government money, and you might be a person who is actually happy maybe I'm cut off (though I wouldn't wish this on my worst enemy) but there is a question that I'm wondering about.

You see, the amount of money I've seen in a few places for people like me to go to the ER is in the $7,000 range for a visit.  I actually was contemplating at a point this week going to the ER because I was in so much pain from the lack of the drug.  So I'm just doing a little math here that if I have to make an ER visit, isn't Medicare actually paying MORE than if they paid the $2,000 for the shot?  (Yep, I get charged double, I don't have the clout they do, so if I want it I have to write a check that will bounce for $4k.)  Where is the logic in that?  Is there some guy sitting in Washington with a chair connected to a something he gives himself a pat on the back, I guess if you cut off a thousand of us, you save the program like 2 million dollars.  But then, you spend 7 million for ER visits, not to mention those of us who will opt for treatments at like $20 to $60k for a complete hospital visit.  So, Mr. Washington, where is the savings there.  Save a dollar, kill a person, but believe me you'll see all of us trying every thing we can to stay alive and that will just bury any savings you have.

What else I learned was the reasoning behind the logic is based on one study done in 1999 and another done in 2003.  The second study involved under 30 patients, and it's funny, but even the studiers concluded that more of the medication was probably needed.  Duh!?!  I wonder if there is a study out there showing there is a single medication available a body doesn't acclimate to and the doctor has to give the patient more. Every medication I've ever been on has to eventually be increased until we reach a level that we have to find a replacement and start the cycle all over again.  Or, I wonder if there is a study of a study which proves that these studies are all just some giant hamster wheel to keep scientists busy, the FDA in paperwork, and patients suffering.  Did you know there is another drug, cheaper, called Lanreotide which is approved in Europe - has been used for years - but is not available here?  Why?  No study I guess. 

While I complain, there is another side to this argument that when patients who got drugs which were not tested well enough started dying like flies, well, you know what happened.  It's too bad, because when stuff like this happens, the dial swings all the way over to the side preventing useful drugs be released.  But for me, hey, I'm a terminal Cancer patient and I really don't give a rat's you know what that the drug could cause me to have some problem.  I'm dyin' here.  (and that's not a joke or punchline)  I mean it literally. 

Soon, we are going to have a call in day and I hope to get a lot of people to call in and ask for this problem to be resolved.  For those of you who are on this and not having a problem, if this stands it will be used as a means to deny you next.  And for those of you on private insurance, you will be next.  Scare tactics?  Not according to my Oncologist who is telling me there is an entire movement now to deny patients access to the useful levels of drugs.

I am not a socialist, but I'm beginning to see why there should not be a profit incentive with medicine.  We are the only country in the Western World who does not provide health care for it's citizens.  I find it hilarious the general population actually fell for the media campaign put on by the profit making entities to convince us this approach is bad.  I guess we are getting what we asked for.  Go take a look at what your company makes and what it takes to run it.  Huge buildings, lots of staff, profits, bonuses, travel, paying doctors, just go on and on and imagine that money being plowed right into our care.  There would be not health care crisis.  We'd all be covered and those of us who are sick could focus on getting well instead of fighting these stupid and stressful battles.

Well, time to take some more morphine.

Medicare and Sandostatin LAR

Response from Medicare Rights

I'll be the first to say I don't know much about Medicare and am not covered by it, myself. But since almost everyone in the US ends up there, sooner or later, I have thrown myself into the controversy regarding the recent restriction of Sandostatin LAR.

To be clear, Medicare does not restrict prescriptions of the drug in doses larger than 30 mg./month. It has been refusing to provide coverage (payment) for more than that amount in many cases. That leaves lots of folks with carcinoid trying to self-inject the generic form of the drug, octreotide acetate or find an additional stash of money (in the $thousands) to keep their symptoms (diarrhea you would not imagine) at bay.

I contacted Medicarerights.org, a non-profit volunteer group that answers questions for the public. Andy Olesker answered and here's what he had to say. Please read all the way to the end as I think this might be very important to anyone on Medicare - even if you are not looking for larger doses of Sando LAR.

Medicare Rights Group at www.medicarerights.org/ A pleasant  guy named Andy responded. He says he doesn't usually get such interesting queries. After I gave him the basics of carcinoid and Sando LAR, he said the following: You have to get your doctor or a doctor involved. He has to write a letter of appeal (not news, I know) that is backed by research (done by you, of course.) He said there are some crucial features: The drug must be in one of the three Medicare compendiums. There is no open access to this compendium, he claims. Only doctors can get into it. IF the drug is in the compendium for use for anything at all (in the case of Sando LAR, it was originally for treatment of Acromeagly - pronounced Akro-Mu-GOLLY, a serious illness at least as bad as carcinoid.) It can be prescribed as "off-label use." Andy claims that the off-label use can also apply to the prescribed amount. He says few doctors are fully aware of the Medicare laws and the new federal law passed in January 09, which accepts anti-cancer drugs into additional compendia. Furthermore, if a certain drug is shown in medical literature to be acceptable in greater doses, it can be prescribed. This law apparently was aimed at letting people with cancer out of an earlier, more restrictive law that tries to stop doctors from prescribing off-label because they get kickbacks from drug manufacturers for prescribing stuff never approved by the FDA for that purpose. You may recall Novartis was fined heavily for doing this very thing. An epilepsy drug was being prescribed to heal peripheral nerve damage (like from diabetes) although it was not supported by studies and the FDA had never approved it for that use. If a person on Medicare has a supplementary drug plan, his doctor can apply for an exception to get the drug covered in the increased dose through the regular Medicare appeals process. (How long does that take?) If the drug plan says no, it becomes a matter of off-label use and an appeal has to be filed for that through a regular Medicare appeal process. (How long does THAT take?) I assume if you have no supplementary drug plan, you go straight to the regular Medicare appeal. Here's the important part, your doctor should cite this change in the law: A covered part D drug (i.e., one which Medicare covers) must be prescribed for a medically accepted indication, as defined in 42 US Code Section 1395w-102(e)(4). This means, in general, that (a) both the drug and its use are approved by the FDA or (b) the drug is FDA-approved and its use is supported by one or another of three or four compendia, such as the AMA Drug Evaluations. However, in the case of a drug used in an anticancer chemotherapeutic regimen, it is also a medically accepted indication if the use of the drug is medically accepted based on supportive clinical evidence in peer reviewed medical literature appearing in publications which have been identified by the Secretary of Health and Human Services. 42 US Code Sections 1395w-102(e)(4)(a)(i) and 1395x-(t)(2)(B)(ii)(II). BONUS FEATURE: Andy told me more people with carcinoid could probably get the infusion pump if they try. He said the pump should be covered as durable medical equipment. I know two people in Texas who got the pump through Medicare. If you have the energy to take this fight a step further, I strongly suggest you get the pump. That means you will be using octreotide acetate - a lot easier drug to work with. It's generic, so the cost is much lower. Self-administered, so no doctors' appointments. Best of all: no butt lumps. I'm back on the pump, myself. It is a slight bother at times but nothing major. You learn in a couple of weeks how to work it and it becomes second-nature. There's something to be said for that even flow of octreotide into the body, too. I believe it is one of the factors in keeping my disease at a slow roll.

Day Six an Symptoms Start Back

Today is Sunday morning and I went to church.  I had to sit outside with the crying babies because I suddenly found that I had the need to be very, very near a bathroom.  It's only been less than a week and the symptoms I've been dreading are starting back.

It all started last night when I got stressed about something, and I felt the old familiar flush come back I've not felt in a while.  Let me describe how this feels to you.  First, you feel dizzy and feel the need to sit down - disorientation follows quickly and sometimes my vision kinds of goes sideways and I have to either sit down or fall.  During this time, it feels like I'm not inside of my body, but someone watching this happen.  Then I feel a rising heat on my face and as it progresses I can see whomever I'm talking to noticing and they always ask "are you having an attack?"  Sitting down makes me feel better, but I can feel my eyeballs are red and I can feel the heat rising out of my face from the flush.  I can usually get it to stop by simply stopping what I'm doing.  So I sit and rest until I'm better, usually takes about 10 to 15 minutes, less if I happen to have a rescue shot with me - then it's about 10 or less.

I know now the hormones are released in my body.  Seratonin is the main hormone and it causes my blood vessels to POP open and this is what causes the flushing.  My heart pounds along with it and sometimes I wheeze, all symptoms something is wrong.  Oh, if I just had the correct amount of Octreotide in my blood stream - this would not be something I suffer from.

Next is the fatigue.  So tired, I cannot even keep my eyes open.  Sometimes I fall asleep where I'm sitting.

Now for the really nasty part.  (Parents of small children, please have them leave the room because what I'm going to describe here is really nasty, but there is just no other way.)  Have you ever had the worst flu of all time and had that time you have diarrhea, the trots, the runs, you know - the stuff that when it goes into the toilet it sounds more like liquid than a solid?  That is how I feel.

First, it starts with what I can only describe as a cauldron of bubbling liquid in my stomach region.  The bubbling gets worse and worse and I feel pressure grow.  By this time, I'm looking for a bathroom because there is no holding back what is soon going to be very unpleasant and painful as time passes.  The pressure builds and builds and soon I find myself running for what I lovingly call my own porcelin throne - of which I rule all I can survey.  All I can see is the bathroom.  Then it hits.  It feels like someone is grabbing my guts as part of a strong man competition and wringing them out as hard as he can.  All I can say is at this point I'm closing my eyes and praying for relief as the stuff literally explodes out.  When I say explodes, I mean explodes.   When the jet of what comes out of my nether region hits the water, it throw water back into the air.  Usually this takes place without effort, it's more of like unstopping a bottle of pop after you shake it up.  Remember when we used to shake up cans of pop and open them, this is a bit of what it is like - it is just a force - old faithful has nothing on me.

After the instance is over, I feel relief and depending on what or how many other problems creep in.  You see, the liquid contains a high concentration of something like acid that is really really hard on the skin around the areas the liquid comes out.  I think is is similar in nature to what babies get when they have diaper rash, maybe we should call it Carcinoid Rash?  My own person relief is to never never never touch anything, but to use water as a source of cleansing and relaxation for the affected area and this seems to help.  I have found other concoctions used in baby relief of diaper rash to be comforting as well.

So, today, I've experienced this five times.  I'm starting to get sore, and so I've got to figure out a way to keep the area clear of the outflowing stuff and clean of it as well as provide soothing comfort.  Sometimes I have to take a wet paper towel and fold it and strategically place it to provide relief.

All of this because I cannot get the medication I need.  Do you know when I was talking with a doctor the other day about this issue, she related to me she used to actually see people die of loss of bodily fluid through diarrhea.  She was terrified of going back to these days.  She was also reminded of the many who died of heart problems, because the hormones we secrete can cause heart problems - the most common the wearing out of a heart valve.

So my questions for Medicare are this:

What is the price of human suffering?

What is the price of allowing people to die of something we have a treatment for?

I've been told, that Medicare is not preventing people from getting the meds, they just are not paying for it.  What is the difference here?  Do you have an extra $50 grand laying around to throw at medications.

I am sad, reader, I'm sad that this is happening. I'm sad because others who have insurance through work are having no problems.  I'm sad that someone who is in a position of power and is probably compensated for saving money, is willing to kill people to save what will amount to nothing in the end.

Mr. person who recommended this approach, what savings are you going to realize when:

1. More Carcinoid Patients end up in emergency rooms with problems the drug could have prevented?  I will bet there is vastly more money spent on emergencies than would be on prevention.
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2. More tests are run which are not necessary when the clinical results from the doctor and patient align with the correct dose.  Hormone testing is expensive, I'll be just as expensive for an Octreotide level blood test as what any savings will be.

3. What is the value to the suffering you are going to inflict on the population? 

4. The is the value to the lives this policy is going to cost?

Personally, I really don't know how anyone who tries to justify this can even look themselves in the mirror.  We were told that Healthcare was something that was not going to allow for anything to stand in between us and our doctors.  Seems like this is EXACTLY what is going on.

Please, I'm asking for help.  If you are a person on an expensive treatment, it will not be long until decisions like this will start happening to you.  We need to stand in solidarity and show this nameless and faceless organization that there are people willing to fight for what is right.

Help us by sending a note to congress or senate.  Your support would be appreciated and the next life you save may very well be not mine, but yours as well.

We Are Patients Pleading For Help

My name is Gary and I have a rare Cancer known as Carcinoid.  This disease causes horrible symptoms and left untreated can even cause heart failure.   For me to live any type of normal life I need a drug manufactured by the company Novartis called Sandostatin LAR or Long Acting Repeatable.   Once per month I trek to a cancer center and am injected with 2 30 mg shots of the drug in my behind. It hurts but it prevents me from the having 40 bowl  movements a day of the explosive kind. I have been somewhat stable on this drug and have used it for 10 years.

I am on Medicare.  I suddenly get a bill from them denying payment for two shots.  They say the time indicated does not support the dose. I discovered later others are being denied, but only in certain regions of the country. I find out this is because in an insert the company is forced to include in the packaging a statement that there is no benefit beyond 30 mg per month. It do not know the full story behind this, and that is where our journey starts. I and others like me need your help and support. This drug can cost $8,000 per dose, and some of us need 2 shots every 2 weeks. Do the math. We don't think the healthcare law was intended in this way. In fact,we are all surprised as we were promised the government would not step between us and our doctor.   I understand no physician treating patients was even spoken to about this policy. 

I now have limited options in treatment.  My only real one is to go down in dosage, get sick, do a test measuring the level of the medicine in my blood, and then resubmitting a request to overcome this issue.   How would you like to have to do that to get the dose you know works for you for years? Could you live with some decision made by a faceless organization to deny access to the very thing which allows you to lead a normal life? I can't, and so I asked for help. 

This blog exists now through the cooperation a number of individuals concerned about the sudden denial of the medication by regional offices of Medicare.  Our hope is ask for your help with this simply by watching this blog and participating in surveys and calling and writing to Washington. We can only try to drive change, and if we do not try nothing will change and a lot of people will die due to a bad decision.  Unless we all get involved, a lot of people are going to suffer and likely die because of this poor decision. 

At the side of this blog are links leading to sites you can find who your representatives are.  We hope to soon have a petition to sign,  in the mean time write, call, or email your representative and let's stop thi in it's tracks before it prevents treatment to  all of us.  Also, included is a link (here) to a form letter for a start to the people who are in charge of this in Washington. 

At the very least, please write to the department in Washington responsible for this at the following:

The Honorable Kathleen Sebelius, Secretary
Health and Human Services
200 Independent Ave. S.W.
Washington, D.C. 20201

Watch Secretary Sebelius talk about how Medicare will be "better." 


Secretary Sebelius is responsible for Medicare.  Please write or call Medicare and question the policy.