corruption behind Provigil, medicaid issues, and an update.

[lovey]

It's been awhile again, but I have been extremely busy! One interesting subject is that I found out why there is no generic Provigil. In 2006, Provigil was supposed to go generic. The company claimed another patent on the "granulation" of Provigil that would extend their exclusive patent rights to 2015. Well, 4 generic drug companies found a way to make generic Provigil without the special granulation. They tried to go through the courts to market generic Provigil in this way. Cephalon (the makers of Provigil) entered into agreements with the 4 generic companies to not market generic Provigil until 2012. Cephalon paid them hundreds of millions of dollars not to produce the generic. The Cephalon Co. (those lying thieves), say that these agreements are good for the consumer because it allows the generic to be available 3 years earlier than the patent on the granulation allows.

The Federal Trade Commission is suing Cephalon, but it is delayed in the courts. They are saying they are manipulating and monopolizing a market for a drug that has no substitute or alternative. The FTC wants to make sure that this doesn't happen again in that it can extend many patents more, avoiding generic, by these backroom deals. Cephalon should make around 4 billion dollars by 2012 on this backroom deal. While other companies stocks have crashed, Cephalon's stock price/worth has increased, especially in the last year.

So, people like me, who only do well on Provigil, end up paying for their thievery. If I didn't have Medicaid as a secondary, my copayments would be $100 a month this year. Before Medicaid, I was paying $50 dollars a month. My prescription retails at $625 a month. While in the future, Cephalon will probably have to pay out monies on this scam, it probably won't make it to the consumers for co-payments..it most likely will go to insurance companies, and Medicaid and Medicare.

This is outrageous. I have been trying to spread the word, and have been lobbying the FTC to make sure that this thievery is not allowed to continue, and that a generic is made available asap.
---------
Health care reform has been my main focus these past few months, especially Medicaid reform. Last week, I went to Lansing, to the Michigan House of representatives and met many legislators I had been emailing for months. The meeting was with many people on health care reform. Meanwhile, I have been learning more about my situation on Medicaid spend-down. The state of Michigan has basically policied out anyone on SSDI from Freedom to Work Medicaid. SSDI is the type of Social Security disability that is based on earning enough work credits. If I got SSI, and had never worked, I would have full Medicaid and could be on Freedom to Work Medicaid. But because I am on SSDI, not SSI, I am on a Medicaid spend-down, which equals $975 out of my income of around $1500. I have to fill out a pile of paperwork each month. I found out last week that my Medicaid budget allows me $335 a month in "living expenses". And I am allowed $85 of wages, and any amount I earn above $85 goes 100% to Medicaid. So I can't work myself out of this situation. If I had never worked, and were on SSI, I would at least receive $700 a month in SSI. I would be allowed to work up to $40k and stay on full Medicaid with a small buy-in. The state rewards people who have never worked, and they reward people for laziness!!! As my Medicaid budget is right now, I am not "allowed" to earn enough to pay my rent of $495 a month... MI Medicaid doesn't take into account my actual expenses when figuring my spend-down. Never mind I also might need electricity... It's all crap.

I have told the legislators, that if I end up bankrupt and homeless because of them, I am setting myself up with an outlet in that meeting room at the MI house of representatives. And, when I feel like a change, I am going to my U.S. Congressman's local office. I'll plug in my bipap and oxygen concentrator, and make myself at home!!! Now, I have been invited to meet with MI Senate's legislators...I'll make sure to check out their "accommodation" also.

---------------
Medically, I have been doing much better, since being on the oxygen. Because of stupidity on the part of doctors, insurance, and Medicaid, I had to wait 7 weeks for oxygen after an oximetry report showed even with my bipap on, I destated to under 88% oxygen for 2 hours. There is a pattern in the two oximetry tests I had (the second one in December for insurance purposes), were I am fine, destat for up to 2 hours, and then I am fine again. I went to the University of Michigan yesterday. I am going to paste a post I made on my blog. My initial AHI was 81, 3 years ago fyi. I had always thought that OSA was a "stable" condition...but according to the U of M doctors, it is considered a deteriorating condition over time, due to the bodily stress of continually having to compensate for the apneas. FYI, also, I am having lap-band surgery on March 16th.
Here's the post:
Well, after 5 months of waiting, I was finally seen by the University of Michigan Sleep Disorders clinic. I ended up being seen by 5 doctors---they each kept getting their supervisor...
What it get downs to, is that my sleep apnea is so severe, there is a high mortality rate. 3 years ago, when they did the first sleep study, I stopped breathing 450 times in 6 hours. And even though I have been very compliant with using my sleep apnea machine (cpap), people usually deteriorate over time, and usually have a stroke or heart attack or they simply die in their sleep within a couple of years.

But I am the exception to the rule. I have improved in the last three years, in that my heart is in better shape and my apneas, most of the time each night, are much less. However, because I have been losing weight, this has upset the homeostatis/balance that I have achieved with the sleep apnea, and this is causing "destating" episodes. They think though that the added oxygen at night is helping me compensate during these episodes, and that's why I have seen great improvement since I am on it.
They think the only reason I am alive is because of the weight loss (100 lbs. in 2 years). The main option for treatment is for me to continue to lose the weight. They feel I have a good prognosis to overcome or greatly lessen the severity of my sleep apnea. They like that I am having the lap-band surgery in a little more than a week. The other thing, is that when I am closer to my goal weight, is to have a boob job (breast reduction). The weight of my boobs is causing some of my problems.
This has been a lot to take in, but it is good to know that I have done everything I should have to make myself better. It also strengthens the need for my weight to be dealt with now, rather than later.
I'm trying to set up a bigger support system, because this is much more serious of an issue, and will need support to reach my goals.

Sorry this post is so long, but I have a lot to update you all on, and lots to say!!!

Take care, Lovey (Laurie)

[tdm5032c]

Wow, that is very interesting. Before I started on my CPAP treatment, my doctor prescribed Provigil for me to help with the fatigue. I have very good insurance and prescriptions are normally pretty cheap. A 30 day supply of Provigil STILL cost me $75.00!! That's ridiculous! These drug companies need to be controlled by someone so they can't get away with this kind of thing. A lot of people that could really benefit from Provigil simply can't afford it. Even with insurance.

[Slinky]

Wow, Laurie!!! Thank you for sharing! The SSI/SSDI is every bit as disturbing and infuriating as the Cephalon/Provigil situation! Thank you for advocating in Lansing. May God be with you.

[kteague]

Hi again. Yes, it has been a while. I had recently wondered what was going on with you. Thanks for the update.

The things you report are disconcerting to say the least. Since on this journey I see things that just don't make sense to me either. I have to give you credit. Even with your health issues you have the resolve to make a difference. My compromised analytical abilities make it hard for me to slice and dice info enough to fully comprehend the real issues, then to remember it enough to repeat it coherently - that's another story. Good for you for speaking out on what you believe.

Kathy

[packitin]

I feel for you.
Can you give us your blog address?
Jay

[lovey]

My blog is http://tenacious-lovey.blogspot.com/ I only started it in the last few months, mostly because I had so many blogs I was following that I wanted to read, and making a blog makes it easier to get them all in one place. Right now, I only have one follower!! I did post today again, with a letter I sent to my legislators, about how I was going to plug in my cpap and oxygen concentrator at their offices. I didn't mention in my last post here, that I don't qualify for Medicare, because if you are approved for Social Security Disability, there is a 2 year, 5 month wait for Medicare. I won't qualify until December. I am paying right now $609 of COBRA premiums a month, which is 150% of normal COBRA premiums, because I am on the 11 month disability extension of COBRA until I reach Medicare eligibility. Last year, I saved $32k in Medicaid monies by my keeping/paying my COBRA. Michigan doesn't have any program to support this. The economic stimulus doesn't help me, because you had to be terminated before Sept. 1, 2008 for COBRA assistance.

Thanks for the encouragement to keep up the journey. Surprisingly, I am generally in good spirits. I have much more purpose in my life right now. Take care, Laurie

[Slinky]

Having a purpose helps us to overcome a lot of handicaps and disabilities to achieve that goal/purpose. Thank goodness you have chosen such a valuable goal and purpose that could benefit so many!!!! Straighten your halo, Laurie, and HAVE AT' EM!