Category Archives: value of treating MS

Everyone Acts For Themselves

Everyone wants more.
Everyone wants more.

Free market theory assumes all actors work with an enlightened self interest, meaning every one will do what benefits them most. When it comes to health care, I have long maintained we as patients lack the needed knowledge to act in our best interests. As I said in my last post, we have trouble picking our best source of medical care. Unfortunately, that problem only covers one part of our system’s failing. Let’s imagine four decision points where all of our actors behave as theory would have us believe, in their best interests.

Imagine for a second three stakeholders with a newly approved drug. The first is the drug company which has spent millions of dollars developing a new treatment which seems to meet an unfilled need of our second actor, the patient. The pharmaceutical company knows the need of the patient and has invested heavily over a period measured in years to bring this new drug to the patient, and they want to maximize return on their investment. Since many of these investment fail to bear fruit, the costs to the pharmaceutical is huge, and they have to pass the costs along in order to stay in business and gain investors. The cost to the patient starts extremely high. Let’s call this Decision A when a patient goes to their insurance company as says “I need insurance to cover this.”

The patient has purchased insurance from our third actor the insurance company. The insurance company has thousands of patients who could benefit from this drug. As a result of this purchasing power, they have some bargaining power. However, the pharmaceutical company knows patients’ desire for the drug is strong enough to push patients to pick the insurance company which will cover their treatments. The result is our third actor does not have the needed bargaining power to force the pharmaceutical company to lower costs overly much.

So what does the insurance company do faced with a choice of losing customers or losing money due to high costs of the new medications? They do one of the only things they can do. They attempt to influence the patients to pick cheaper medications by making patients pay more. In effect, they lessen the amount covered for these “specialty drugs.” The logic is if patients have more of a financial stake, their decisions will differ. So the insurance company raises the patient copays. Let us call this Decision B.
Our first stakeholder sees this happening too. What can they do to make sure patients can afford their drug? The smart companies identify the patients most likely to be sensitive to price and tailors programs to keep them buying the product. I suspect this is the beginning of the “copay assistance plans” many pharmaceutical companies have for their expensive drugs. Think of this as a sale for which patients must apply, and the pharmaceutical company generates good will for giving away their product at a “discount.” Let us call this Decision C to offer copay assistance.

If our story ended here, maybe it would be sustainable, but it does not. The nature of insurance in the U.S. is to have a maximum amount patients are forced to pay. After all, that is why we have health insurance, to keep health events or conditions from wiping us out. What happens when the pharmaceutical costs are so high the maximum out of pocket is reached? Suddenly, the insurance companies’ tool to contain costs disappears completely. Now the pharmaceutical company can raise rates again because the copay assistance no longer lowers their profit as all costs are being born by the insurance company again. Once the pharmaceutical company realizes there is a maximum they will have to help pay, they can make sure the cost of paying the insurance copays is included the price they charge. In effect, the insurance company is paying its own copays. Let us call this Decision D when pharmaceutical companies add the copays back into the cost of the drug.

At each of these four decisions A-D, our actors made decisions in their best interests. At decision point A, the pharmaceuticals brought a drug to market and began by pricing their drug at what the market would bare. The patients who wanted the drug could not afford it, but they had insurance which covered it. As more patients with insurance wanted the drug, the insurance company had to change things or loose too much money. The copay rise is decision B. The pharmaceutical companies realized the insurance companies would drive customers away from their product unless something was done to keep the costs from adversely impacting patients . This brings us to decision C, the copay assistance. When the pharmaceutical company realized there was no longer a constraint because patients were no longer paying the copay, the pharmaceutical companies realize they can make back their copay assistance from decision C. At this point, there is no longer a downward pressure on price which leads us back to decision point B except prices are higher this go round, and copays are no longer an effective tool to contain costs.

Wall Street Journal: Health Insurers Discriminate Against Patients Who Need Specialty Drugs

While many may read the article in the Wall Street Journal as a terrible injustice insurance companies are inflicting upon us in the land of sickville, I look at it as a predictable decision point. The article describes decision point B. I have benefited from decision point C, and I know many other patients have as well. At some point in the near future, I predict we will complete the cycle. I know the drug I take for MS still costs 70-90K a year, and the price has not dropped significantly in the 8 years I have taken it. I attribute some of this to decision point D, but I have to admit I have not looked too closely at the marginal costs of the drug maker to make another dose for me or the time frame they need to recoup their investment costs. It has never been in my interest as a patient to care overly much when I pay so little. As more patients, pharmaceutical companies, and insurance companies continue to act in their own interests, how long can our free market continue to function without collapse?

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Do You Sleep Like This?

“Sleep is for the weak!”
When I was younger, this was my rally cry as I drove from New Jersey at 4 am to be at work in DC. On time by 8.  It was my rally cry driving home from a weekend white water rafting trip knowing I only had time to shower before hopping in the car for work.  As I get older, I’ve had to add to the saying to adapt for changing circumstances.  I now believe the saying, for who has energy for a rally cry, should more properly be, “Sleep is for the weak.  Without sleep, we all become weak.”
Nights 1-3: O goes to bed at 9 and listens for me to take the dogs on a walk.  This action triggers operation “Night Time Parade.”  The goal of these exercises, carried out with an almost inhuman precision, was to wake any and all in the house and test outer perimeter.  Sleep is only achieved after an hour of being caught and told in progressively more hostile tones to “Go to Bed!”
Night 4: We caught O attempting his night run after stern warnings before bed.  I followed through on threat, and he spent from 9:15 when I returned on my walk till 11:10 cleaning the basement, including a finale of cleaning the bathroom floor around the toilet with a few Clorox wipes.  After getting him to bed, I proceeded to take my meds and give a nebulizer treatment to our wheezing K.  By 11:30, I was ready to declare victory and head to bed after checking on the now sleeping O.  I woke at 5 am. To get ready for work only to trip over O who was sleeping on the floor by the bed.  So much for staying in bed….
Night 5: 9pm. brought the standard warning of Ragnarok should he get out of bed again.  So O spent the hour between 9:30 and 10:30 writing “I will stay in bed” over and over again.  We thought the different cleaning activities must have provided enough stimuli to keep him going the night before, so how about boring him to make staying up even more boring than staying in bed?   After getting him to bed again, I proceeded to take my meds and give a nebulizer treatment to our wheezing K.  By 11:30, I was ready to declare victory and head to bed after checking on the now sleeping O.  I woke at 5 am. To my alarm on my phone, but I can’t find it where I left it.  Evidently O had a midnight call and text fest.  Thankfully all but one text was to my wife, J.  I slept through it all.
 (Continue on next page to find sleep at the end of a hard week.)

Night 6: The Ragnarok threatened on Day 5 has arrived.  O swallowed rather chewed his meds at night to help him sleep.  He was up all night.  He snuck out and colored the driveway and side walk with chalk.  In his mind’s eye he was putting warnings to all robbers.  He took a couple of J and mine shoes to leave outside along with leaving the front door wide open.  J must have interrupted him, as she had to yell him every hour all night long for doing things like breaking the window shades in his room or opening the windows or going downstairs to the kitchen to “get a drink from the fridge.”  The only sleep he got that night was when I lay next to him from 6-7am. But he woke up within 5 minutes of me getting up, so much for getting him to sleep with sympathetic breathing rates.   His therapist was amazed seeing him the next day as he still acted hyper.  J and I thought we may die, though I slept through at least 5 hours of the battles.  I was exhausted.
Night 7:  “You may not go to sleep.  You wouldn’t let us sleep last night, so tonight we won’t let you sleep!” It appears victory may finally be in sight.  We kept him up until 10pm.  The last hour was a sob fest of “I want to go to bed.  Why won’t you let me go to bed?  You always tell me to go there, and now you won’t let me!”  Tough.  Maybe this time when you earn it, you will be thankful to go to bed.  At the end of the day, the nebulizer treatment was completed and the house alarm was set.  With Jake alive, we never needed the alarm because he barked in defense whenever the doors opened.
Night 8: We have the appearance of victory for at least one night.  He was in bed at 9 with only minimal complaint of needing a tissue.
Sleep well prince O.  Destroy not the harmony of sleep.  Let it nurse all of our strength back to…well at least back to our base line.  Maybe the picture above shows some of the problem as O’s position is hardly the normal position in which to sleep. 
Follow up from earlier posts:
On the tests to determine which drugs are likely to be effective mentioned in http://thelifewelllived.blogspot.com/2012/07/ask-right-question.html?showComment=1344137799198#c7489286398116658829
I asked my neurologist if they were using these tests at Hopkins.  His answer was they are not.  They and others have tried to replicate the tests in the article for T17 versus T1 related MS and the predicted reactions to interferons.  They have thus far failed.  
I also asked about the study showing little long term effect on disability progression using the interferons.  He saw the same reports, but cautions on the impact of those who drop from the test or start taking some other disease modifying drug in the middle.  There is a sort of selection bias for those who never started the drugs over the 10 years.  What portion of them didn’t take the drugs because they were the lucky few for whom MS does not noticeably progress.  Thus that group should compare favorably with those taking the drugs hoping to have the same progression, none.  He said in his years at Hopkins, the advancement in the treatment of MS has come a long way since the 1980’s.  Thanks to the front line drugs, he sees far fewer patients disabled by MS.  While Copaxone didn’t work for me, I frequently attest to being spared by Tysabri to the point of being able to run 5k at lunch on nice days and row it on the nasty hot days of summer.  Knowing where I was 6 years ago with my MS, begging for and being thankful for enough of a break from the headaches to enjoy a week long trip down the Grand Canyon, I have to say luck is still with me.
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