Stop the therapy cap!

Addendum 9.18.14: 
As of today 220 members of the 435 congressmen have signed on as co-sponsors of the House bill to repeal the therapy caps. --Thank you Rebecca Dutton!

Let's say you've had a stroke. Not much of a stretch, huh? Now imagine a federal algorithm that determines the amount of therapy you'll get before you even have a stroke. Can't be done you say? Every stroke is different and so would need a different amount of therapy. 

You'd think the amount of therapy you'd get would be based on what the clinicians sitting in front of you think you need. But yeah, no. That's not the way its done. 

For stroke survivors the amount of rehabilitation available has progressively fallen as subacute stroke inpatient stays have dropped to an average of less than 16 days and as Medicare has capped the number of outpatient therapy sessions to 15/year.

And what really confuses me is why the Federal guidelines are not in concert with what the research says! 

So, if you're with me on this, click the red image above and let 'er rip. 

PS, the congressman who had a stroke, how much therapy did he get given the insurance provided congress? "...nearly a year of intense, grueling physical and occupational therapy." 

Exercising the Brain after Stroke

What drives stroke recovery? This question is both complicated and profoundly simple. It’s complicated because recovery involves rewiring the brain, and the brain is...complicated. It’s simple because the brain rewires in response to very simple instructions. In fact, these instructions have been known to athletes, musicians and other skilled workers for thousands of years. 

In the rehab clinic, exercises are called "thera ex (short for therapeutic exercise).

Therapists usually want to know which are the best thera ex for helping stroke survivors recover.       Beyond exercising, the other big option used in clinics are collectively called handling techniques. Handling techniques are just like they sound, the therapist moves you. Handling techniques, if you believe the research, don't much help. (If they did, I'd pay someone to "handle me" into being a better skier!). Exercise, for its part, is great! Exercise makes the muscles that need strengthening, stronger. The problem is, exercise is only mildly effective at changing the brain-- and stroke is a brain injury. Let me put it this way: a muscle can be strong, but useless because it does not know what to do. "Muscle memory" does not exist. The brain controls while muscles can only do two things: contract and relax. It's the brain stupid. 

Consider the one stroke recovery option that has consistently done really well in research, constraint induced therapy (CIT). In CIT, there are no specific exercises. Movement is required, however. The movements required during CIT very little resemble thera ex because focus is on repetitive practice, not muscle strengthening. And there are no handling techniques. In fact, CIT is decidedly and pointedly hands-off. It is cause of some curiosity among researchers why this hands-off philosophy is so difficult for therapists to accept. The only way of driving cortical change towards recovery is through volitional efforts by the stroke survivor. These efforts are actively encouraged no matter how ugly, synergistic or uncoordinated they are. Edward Taub, the person who developed CIT is a psychologist. As he was developing CIT in animal models, handling techniques and exrcises may have been the furthest thing from his mind. The closest, certainly, was operant conditioning which does appear to change the brain. Stroke is a brain injury, not a problem specific to muscle weakness. The term “neuromuscular re-education” is used a lot in PT and OT. In fact, you can bill for it. But the term is a misnomer. If it was an honest term it would be "motor-cortical reduction", or "movement reeducation." Relearning how to move after stroke has little to do with the muscles and everything to do with the brain. Stroke recovery involves brain reeducation. Different focus, different organ, different paradigm, different rules, different outcome measures. 

Okay, I just don't like or respect the guy

A few days ago I wrote about the drug whose cost was going from something reasonable $3.50 per pill to $750 because the new company owner wanted to. Due to pressure, they have now said they will reduce the price but didn't say when or by how much.

This same person has a history of filing frivolous lawsuits to interfere with FDA approvals and also hedging against the company stock. So he ends up making a bundle while slowing down drugs reaching the market. So this lovely gentleman has a history of doing this:

"Until this week, Shkreli was largely unknown beyond Wall Street and the pharmaceutical industry.He gained sudden notoriety for jacking up the price of Daraprim, a drug used to treat life-threatening infections, just two months after his company, Turing Pharmaceuticals, acquired the medicine.
Initially defiant in the face of an onslaught of criticism, the 32-year-old chief executive agreed on Tuesday to lower the price, although he has not indicated when or by how much."

But wait there's more!

"Shkreli employed a similar pricing strategy at Retrophin, another drug company he ran before its board of directors booted him from his executive position. Last month, Retrophin accused him in a lawsuit of using company funds to repay investors after his hedge fund became insolvent."

Isn't this illegal?

"Shkreli also has a track record of betting against pharmaceutical stocks — a practice known as short selling. And in at least two cases he pressed federal regulators to reject the companies’ product at the same time he was betting the stocks would go down."

I think I have a nasty name for him now.

"In 2010, while running his hedge fund, Shkreli wrote a letter to the FDA urging the agency to turn down an application from MannKind, a company he was shorting that was seeking approval for an inhaled insulin product, according to news accounts. The agency initially had multiple issues with the drug but eventually approved it last year."

And again:

"In 2011, Shkreli then turned his attention to Navidea and its cancer diagnostic, called Lymphoseek — this time going so far as to a file a “citizen’s petition,” a more formal kind of regulatory complaint. Shkreli has no formal medical or scientific training. But while shorting the firm’s stock, he argued there were problems with the design of clinical trials used to evaluate the radioactive agent.

He publicized his complaints and financial bets against Navidea, which caused the company’s stock value to drop by nearly half, to about $250 million, leaving the drug maker in turmoil.

By filing the petition, Shkreli “almost derailed the Lymphoseek program,” said Steve Brozak, who heads WBB Securities, which helped raise money for Navidea (which was known as Neoprobe at the time). “He created an illusion there was an issue [with the trials], but the only thing he did was make money by shorting the stock. Meanwhile, patients could have been penalized.”"

What a 'nice' guy. He is lining his pockets with complete disregard for the patients who might actually benefit from these medical developments. He is young (32), but I am not sure he will ever grow out of this, unless he ends up in jail.

It is people like this who contribute to the expenses of pharma companies who are trying to bring new life saving treatments to market.

There is no good cancer

I cannot tell you how annoying I find this. To many people state that thyroid cancer is a good cancer. It is not good, its cancer.

A woman in Alaska who has had three cancer diagnoses stated:

""Thyroid cancer takes a long time to grow, so it's a great cancer to have," Zaverl said."

Okay, what is so good about it? After treatment, the patient is left without a thyroid which requires medication and monitoring for the rest of their life. That is not so great.

I do not understand that people who think thyroid cancer or any cancer is a good cancer.

Read more here: http://www.kentucky.com/2015/09/27/4055913/three-time-cancer-survivor-becky.html#storylink=cpy

Keeping secrets

Everyone keeps secrets - like how much I weigh. That is known to me, the scale, and my doctor's office. Its no one's business but mine and, truth be told, I really do not like the number but that's another story. There are other instances where keeping secrets is okay. Like a secret family recipe. Or a medical history.

These secrets are just information we want to keep private for whatever reason. It is fine that they are kept private and not shared indiscriminately.

Then there is the issue of secrets vs. transparency. This is when secrets are kept between groups where they should not be. Transparency is important between groups so that honesty leads and there can be understanding and appreciation of the other side. Without transparency, dishonesty can be suspected and with suspicion comes distrust. Which leads to bias and anger.

A big area where there is no transparency is in drug pricing. The pharmaceutical industry has a problem with this. Yesterday (was it yesterday or the day before?) I blogged about that 'gentleman' who jacked up the pricing of an existing drug for no given reason.

And for an industry already struggling with an image problem over the rising costs of prescription drugs, companies are going to have a hard time distancing themselves from one of the most controversial men in America.

The reason is a lack of transparency. Drug makers do not really want to explain how medicines are priced and, as a result, they have adopted an air of secrecy in which one cowboy can create havoc for an entire industry.

“The [Shkreli] episode is really an extreme manifestation of an attitude that has taken over the industry,” said Bernard Munos, a former corporate strategy adviser at Eli Lilly who is now a senior fellow at FasterCures, a medical research think tank. Most drug companies “are not raising prices by 5,000 percent, but large prices will leave patients with the same impression.”

It’s certainly true that funding drug discovery is expensive. The latest estimate of what it costs to get a drug out the door is, on average, $2.6 billion, according to a 2014 Tufts University report that was funded in part by industry.

Yet pharma leaders have done a poor job of explaining how the cost of R&D translates into a need for climbing prices or the sky-high sticker prices that are commonly set for new medicines from the get-go. Rather than opening their books, drug makers continually repeat the refrain about increasing development costs, and they avoid any candid discussions about cost that may invite more interest in setting price controls.

This is not a good thing. We need transparency to prevent more 'greed based' actions. Honesty and its partner transparency should rule. Secrecy and suspicion should be

The big reveal

I have worked at my  job for almost 6.5 years and am leaving in five weeks. Well I will work remotely one day a week and come in once a month until my replacement is found. Which I assume will take until spring.

I have made friends at work as I have been there so long. They make fun of  my health regularly. And they only know half of it. Yesterday's joke was that I have more ailments than all the patients on the first floor of the local hospital combined. We laugh about it. They wonder how I can laugh about it and I say I have to laugh about it because I really do not have any other choices.

But they really do not know all about my health. They know I have a bad back, fibromyalgia, and rheumatoid arthritis. They do not know about cancer and all the rest. I have decided what I will do when I am done working there is I will give two of my co-workers a link to my blog so they can keep in touch and follow along with the rest of the disasters in my health (unless I miraculously get cured).

In the past, I have never shared my medical crap with my co-workers. I have always felt it doesn't belong in the workplace and I might some day want a reference for another job. At this point, I am retiring and hope to apply for disability social security. I don't plan on needing another job reference because I don't think I can continue to work at all.

So finally I can reveal my medical history to anyone I want to with out fearing any impact on my professional life. I mean who wants to hire someone as unhealthy as me?