Sunday, June 7, 2009
Wednesday, June 3, 2009
Catch up
I ran 2 and a half times around the pond today, like the 5th or 6th time since the spring high-water. I've been inspired and its proving a good way to work stuff off. So I am at the computer now, feeling good in my "Extra Vigilant" t-shirt.
I've joked, "all the cool people are getting diagnosed with ms". I've known Will Hart has been living with ms for a while and he recently shared his diagnosis in an interview. I gave him my "join the movement" t-shirt a while ago via a mutual friend. There are a handful of bands that generate a sound that can create the audible sensations of ms at very loud volumes. Will Hart is a member of the Olivia Tremor Control, a band the can induce such sonic sensations. I have been a fan of the Olivia Tremor Control since their music accompanied long distance drives across Montana and their single, "New Day" appeared on my mix for the moving drive back to Wisconsin.
Now if you like that "New Day" song, go buy the album "Black Foliage"!
I've joked, "all the cool people are getting diagnosed with ms". I've known Will Hart has been living with ms for a while and he recently shared his diagnosis in an interview. I gave him my "join the movement" t-shirt a while ago via a mutual friend. There are a handful of bands that generate a sound that can create the audible sensations of ms at very loud volumes. Will Hart is a member of the Olivia Tremor Control, a band the can induce such sonic sensations. I have been a fan of the Olivia Tremor Control since their music accompanied long distance drives across Montana and their single, "New Day" appeared on my mix for the moving drive back to Wisconsin.
Now if you like that "New Day" song, go buy the album "Black Foliage"!
Wednesday, February 25, 2009
Gearing Up!
I am looking forward to this year's Legislative Affairs Day, March 5th at the State Capitol. Close to 100 people from across Wisconsin will gather together against Multiple Sclerosis (MS). I think that every year we are even more effective than the last as more people travel to Madison to share stories and advocate together.
At our first Legislative Affairs Day, five years ago, we successfully secured the money to fund MS screenings for Wisconsin women through the Wisconsin Well Woman Program. The majority of people living with MS are women. This legislative accomplishment was made possible by Wisconsin volunteers who visited legislators and shared their stories about MS.
I look forward to talking to my Representative and State Senator this year about the problem with allowing "Tier 4" insurance drug co-pays to exist in Wisconsin. Tier 4 drugs include biological drugs scientifically proven to reduce the incidence of MS disease activity in people living with MS. My interferon drug, Interferon-B, now costs $2600 per month. Tier 4 co-pays are typically 25% or even 33% of a drugs costs.
For a person living with MS, who has Tier 4 drug co-pays in his/her insurance plan, s/he can have an $850 out-of-pocket expense -- that's like a mortgage on a modest home in many Wisconsin towns.How free is this person? Can't go shop for a different policy because no insurance company will sell him/her one. People who need this medicine to keep moving (and working and staying optimally productive) need it affordable or too many will decide to stop using it. And some will find themselves bound to a job, for only insurance that covers necessary healthcare services.
Tier 4 drug co-pays are a recent development in health insurance. Insurers are increasingly offering health insurance with Tier 4 drug co-pays as a way to "control costs" [for them]. Plans with Tier 4 drug co-pays cost less. Employers that provide employee insurance, looking for a way to "control [the] costs" might seek to save money [for themselves] and buy this insurance. Maybe your employer has already announced that your health insurance has changed?
Employers have an economic interest in buying health insurance that include a Tier 4 prescription drug plan. If you do not have a health insurance plan with Tier 4 prescription co-pays and you use a biological drug, you are lucky -- for now, but be aware you could be next!
I'm going to Legislative Affairs Day to advocate to end Tier 4 health plans in Wisconsin. We need to end Tier 4 -- there needs to be a cap on how much out-of-pocket any drug costs.
At our first Legislative Affairs Day, five years ago, we successfully secured the money to fund MS screenings for Wisconsin women through the Wisconsin Well Woman Program. The majority of people living with MS are women. This legislative accomplishment was made possible by Wisconsin volunteers who visited legislators and shared their stories about MS.
I look forward to talking to my Representative and State Senator this year about the problem with allowing "Tier 4" insurance drug co-pays to exist in Wisconsin. Tier 4 drugs include biological drugs scientifically proven to reduce the incidence of MS disease activity in people living with MS. My interferon drug, Interferon-B, now costs $2600 per month. Tier 4 co-pays are typically 25% or even 33% of a drugs costs.
For a person living with MS, who has Tier 4 drug co-pays in his/her insurance plan, s/he can have an $850 out-of-pocket expense -- that's like a mortgage on a modest home in many Wisconsin towns.How free is this person? Can't go shop for a different policy because no insurance company will sell him/her one. People who need this medicine to keep moving (and working and staying optimally productive) need it affordable or too many will decide to stop using it. And some will find themselves bound to a job, for only insurance that covers necessary healthcare services.
Tier 4 drug co-pays are a recent development in health insurance. Insurers are increasingly offering health insurance with Tier 4 drug co-pays as a way to "control costs" [for them]. Plans with Tier 4 drug co-pays cost less. Employers that provide employee insurance, looking for a way to "control [the] costs" might seek to save money [for themselves] and buy this insurance. Maybe your employer has already announced that your health insurance has changed?
Employers have an economic interest in buying health insurance that include a Tier 4 prescription drug plan. If you do not have a health insurance plan with Tier 4 prescription co-pays and you use a biological drug, you are lucky -- for now, but be aware you could be next!
I'm going to Legislative Affairs Day to advocate to end Tier 4 health plans in Wisconsin. We need to end Tier 4 -- there needs to be a cap on how much out-of-pocket any drug costs.
Tuesday, December 9, 2008
Exciting Times
I'm optimistic for results in the effort to pass legislation that causes quality, affordable health insurance for every American. There are so many people working to this end. I am so looking forward to 139 days from today to assess our progress.
Bayer, the company that now owns the patent on Interferon-B, the drug I use, has rolled out a "new" 30 gage needle for the injection. I think my first injections, 7 years ago when the price of 15 injections was only $960 per month, were with a 30 gage needle. Then the last company that owned the drug patent did a reformulation and designed a new system to "ready" the injection -- they sold 15 injections with a larger needle at a cost of about $1300 per month. No one asked for my opinion, but I prefered the $960 per month drug version because I had more control of the injection preparation process (and even though I'm insured, I prefer to not enrich an industry that spends twice as much on advertising than on research to find cures).
Now Bayer, in their brilliant greediness has reduced the number of "monthly" injections to 14, even though they kept the price of the drug, no more effective than when I started using it in 2001, at the private health insurance killing price of only $2360 per month. I'm sure if they can think of another way to squeeze another dollar out my insurance company, they'll figure it out.
Can you believe that their patent expired a couple years ago? And they have no competition?
Bayer, the company that now owns the patent on Interferon-B, the drug I use, has rolled out a "new" 30 gage needle for the injection. I think my first injections, 7 years ago when the price of 15 injections was only $960 per month, were with a 30 gage needle. Then the last company that owned the drug patent did a reformulation and designed a new system to "ready" the injection -- they sold 15 injections with a larger needle at a cost of about $1300 per month. No one asked for my opinion, but I prefered the $960 per month drug version because I had more control of the injection preparation process (and even though I'm insured, I prefer to not enrich an industry that spends twice as much on advertising than on research to find cures).
Now Bayer, in their brilliant greediness has reduced the number of "monthly" injections to 14, even though they kept the price of the drug, no more effective than when I started using it in 2001, at the private health insurance killing price of only $2360 per month. I'm sure if they can think of another way to squeeze another dollar out my insurance company, they'll figure it out.
Can you believe that their patent expired a couple years ago? And they have no competition?
Monday, October 20, 2008
The hardest walk
You thought I was gonna talk about the Jesus and Mary Chain song here, didn't you? It is one of my favorites by them.
I was thinking about the race for President.
The next President will profoundly affect healthcare for the next 4 years and beyond. Our Federal Government spends like 60% of all healthcare money -- that's powerful.
And its shameful that the Fed isn't doing more to affect healthcare. Our Federal Government should be negotiating with drug companies to lower drug costs with that 60% collective buying power. To protect our Federal Government's resources that are paying for new healthcare facilities, our Federal Government should negotiate with Healthcare companies any time one wants to build new facilities. Our Federal Government should create an FDA pathways to approve generic biological drugs and help remove barriers to new therapies. The Federal Government should allow for the importation of foreign drugs too -- like Europe's generic interferon-B drug.
Federal Government agencies can promote research, even say what research can't be done. Research can find cures, save lifes, save money. We need more research and our Government can promote it.
And the next President will affect who has health insurance, whether it is affordable and who does not.
Senator McCain's health insurance plan will increase my family's taxes by making us pay taxes on the cost of our benefits. My employer will lose the tax deduction for providing employee health insurance. My insurance costs $14,000 per year (a $2,000+ new tax) and McCain's tax credit of $5000 to buy our family's insurance is a joke. No insurance company will sell me any health insurance. If I could somehow get a plan, it will be a government subsidized plan filled with other sick people so the rates will be crazy expensive.
I hope everyone votes. Please vote.
I was thinking about the race for President.
The next President will profoundly affect healthcare for the next 4 years and beyond. Our Federal Government spends like 60% of all healthcare money -- that's powerful.
And its shameful that the Fed isn't doing more to affect healthcare. Our Federal Government should be negotiating with drug companies to lower drug costs with that 60% collective buying power. To protect our Federal Government's resources that are paying for new healthcare facilities, our Federal Government should negotiate with Healthcare companies any time one wants to build new facilities. Our Federal Government should create an FDA pathways to approve generic biological drugs and help remove barriers to new therapies. The Federal Government should allow for the importation of foreign drugs too -- like Europe's generic interferon-B drug.
Federal Government agencies can promote research, even say what research can't be done. Research can find cures, save lifes, save money. We need more research and our Government can promote it.
And the next President will affect who has health insurance, whether it is affordable and who does not.
Senator McCain's health insurance plan will increase my family's taxes by making us pay taxes on the cost of our benefits. My employer will lose the tax deduction for providing employee health insurance. My insurance costs $14,000 per year (a $2,000+ new tax) and McCain's tax credit of $5000 to buy our family's insurance is a joke. No insurance company will sell me any health insurance. If I could somehow get a plan, it will be a government subsidized plan filled with other sick people so the rates will be crazy expensive.
I hope everyone votes. Please vote.
Monday, September 22, 2008
2 miles
I did something today, that I've not done since I was probably 17 years old. Abbey and I ran 2 miles together. She was nice enough to run with me (she runs more regularly and usually farther than 2 miles). Back when I was 17, I was running cross country in high school. I wasn't a very good runner, but I liked getting into good shape for basketball season (I wasn't a great basketball player either, but being 6th or 7th guy off the bench meant I usually scored a few points each game).
The temperature outside today was in the mid 70s. At about the 3/4 mile point, I was aware that the flesh of my right leg, the lower femor area was growing numb. A mile later, both knee areas were numb and my forearms, especially my right forearm was very numb. Abbey helped walk me to our home. Climbing the stairs, my head was spinning.
Fortunately, Abbey turned the shower water on at a room temperature for me. Conditions normalized after about 10 minutes of not-too-warm water runner over me. I ran two miles!
Abbey is always doing things to assist me. Recently, she picked up my meds for me. When I got home, she handed me the box of Interferon-B, noting that the box color changed. She wasn't sure the box contained the same meds I usually got from the pharmacist. I told her, they must have changed the price. I've noticed when the box colors change, the price is usually increased. When I looked at the receipt, yup, the price was increased from $2240 per month to $2369 per month. Same meds, different color box colors, no more effective, just more expensive. I wonder how many other people using biological drugs witnessed the color of their med box change this month? This is at least the second time the box color has changed since the start of the year.
If only Abbey had the power to cause congress to pass a law that created an FDA approval route for generic biological drugs -- the patent on Interferon-B is expired -- she'd do it if she was a member of congress. My parents saw Barack Obama in Green Bay today -- I'm confident that Barack Obama would create an FDA approval route for generic biological drugs.
The temperature outside today was in the mid 70s. At about the 3/4 mile point, I was aware that the flesh of my right leg, the lower femor area was growing numb. A mile later, both knee areas were numb and my forearms, especially my right forearm was very numb. Abbey helped walk me to our home. Climbing the stairs, my head was spinning.
Fortunately, Abbey turned the shower water on at a room temperature for me. Conditions normalized after about 10 minutes of not-too-warm water runner over me. I ran two miles!
Abbey is always doing things to assist me. Recently, she picked up my meds for me. When I got home, she handed me the box of Interferon-B, noting that the box color changed. She wasn't sure the box contained the same meds I usually got from the pharmacist. I told her, they must have changed the price. I've noticed when the box colors change, the price is usually increased. When I looked at the receipt, yup, the price was increased from $2240 per month to $2369 per month. Same meds, different color box colors, no more effective, just more expensive. I wonder how many other people using biological drugs witnessed the color of their med box change this month? This is at least the second time the box color has changed since the start of the year.
If only Abbey had the power to cause congress to pass a law that created an FDA approval route for generic biological drugs -- the patent on Interferon-B is expired -- she'd do it if she was a member of congress. My parents saw Barack Obama in Green Bay today -- I'm confident that Barack Obama would create an FDA approval route for generic biological drugs.
Tuesday, August 26, 2008
Everything is political
Last night I watched Michelle Obama address the National Democratic Committee Convention in Denver. I remembered that Barack Obama was affected by multiple sclerosis and I was reminded that Michelle's dad had ms and died from complications. My great-aunt died from ms complications too. So did my childhood neighbor recently -- she was a mom and I think a year younger than my brother, so only 40 years old. It made me uncomfortably squirm when Michelle said her dad died from complications from ms. Michelle Obama spoke eliquently, amazingly. I admire the Obamas.
Can you believe that our government doesn't even keep track of where all of us living with ms were born, where we lived when we were diagnosed? We don't even know for certain how many people live with ms in the United States (there is anecdotal thoughts that the rate is increasing. why?). You'd think our government would be interested in this information to help find a cure.
Yes, everything is political. Most people don't really think about how politics affects almost everything in their lives. When I drove home from work today, I was able to do so because some people got together to pass laws affecting the roads I traveled -- first a law that there could be a road, the road was variously 2 lanes to 5 lanes because of politics, street lights made me stop at least a half dozen times because of politics, politics dictated how fast I drove. And now in some states, politics affects whether I can update this blog while I drive (probably not a good idea and should not be legal). The mileage my car got during the drive was even affected by politics.
Do you ever hear someone say, "Politics don't affect me"? Silly, huh?
I hope that I never miss more elections than I do Green Bay Packer games (never!).
Tomorrow night I am going to walk what will be a couple miles distributing candidate information (a registered nurse, candidate) door to door. Politics affects me so much that I want to make sure that there are good people on the ballot when I go to vote.
For as long as I'm walking, I'm affecting politics; as long as there's politics, politics affects my walking.
Can you believe that our government doesn't even keep track of where all of us living with ms were born, where we lived when we were diagnosed? We don't even know for certain how many people live with ms in the United States (there is anecdotal thoughts that the rate is increasing. why?). You'd think our government would be interested in this information to help find a cure.
Yes, everything is political. Most people don't really think about how politics affects almost everything in their lives. When I drove home from work today, I was able to do so because some people got together to pass laws affecting the roads I traveled -- first a law that there could be a road, the road was variously 2 lanes to 5 lanes because of politics, street lights made me stop at least a half dozen times because of politics, politics dictated how fast I drove. And now in some states, politics affects whether I can update this blog while I drive (probably not a good idea and should not be legal). The mileage my car got during the drive was even affected by politics.
Do you ever hear someone say, "Politics don't affect me"? Silly, huh?
I hope that I never miss more elections than I do Green Bay Packer games (never!).
Tomorrow night I am going to walk what will be a couple miles distributing candidate information (a registered nurse, candidate) door to door. Politics affects me so much that I want to make sure that there are good people on the ballot when I go to vote.
For as long as I'm walking, I'm affecting politics; as long as there's politics, politics affects my walking.
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