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?
Tuesday, December 9, 2008
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.
Thursday, August 21, 2008
Steady
Went to ride the bike at the Y after work tonight. The ride went better today than during Tuesday. The bike said that I peddled 6.02 miles in twenty two minutes, the bike to 11. My pulse was 150 bps mostly. When I finished, I completed a relaxed cool-down. Then I walked, one step after another step, heel to toe without any assistance maintaining my own balance, to the sanitation stuff. I cleaned my own bike. I walked down all the stairs without assistance. I opened my car door, entered and sat in the seat without help and I drove the car.
On Tuesday, I peddled 7.03 miles during 22 minutes. My pulse was pushing 195 bps. Afterward, I needed help moving from the bike to a bench where I sat for about 10 minutes (while Abbey cleaned up after me (I'm lucky)). My head was spinning. I felt a little dizzy. It was unsettling and a little scary. Abbey helped by down the stairs and out the door, into the car and drove us home. We were not home more than a minute and I was in the shower. I felt a lot better after the shower. I agreed that I shouldn't push myself like that again.
When I peddled today, I listened to the Clouds Taste Metallic. It reminded me of 1998. I was thinking about fear, 1998 and the push for the Employee Free Choice Act in Congress today. For so many reasons, not the least including restoring and affirming the human right to bargain collectively again, it is very important that the next Congress passes and the President signs the Employee Free Choice Act into law.
On Tuesday, I peddled 7.03 miles during 22 minutes. My pulse was pushing 195 bps. Afterward, I needed help moving from the bike to a bench where I sat for about 10 minutes (while Abbey cleaned up after me (I'm lucky)). My head was spinning. I felt a little dizzy. It was unsettling and a little scary. Abbey helped by down the stairs and out the door, into the car and drove us home. We were not home more than a minute and I was in the shower. I felt a lot better after the shower. I agreed that I shouldn't push myself like that again.
When I peddled today, I listened to the Clouds Taste Metallic. It reminded me of 1998. I was thinking about fear, 1998 and the push for the Employee Free Choice Act in Congress today. For so many reasons, not the least including restoring and affirming the human right to bargain collectively again, it is very important that the next Congress passes and the President signs the Employee Free Choice Act into law.
Tuesday, August 5, 2008
We did it!
After 7 hours of peddling on Sunday, we rolled into Madison, completing the 125 mile ride; as of this second, we've raised just under $2000 to end multiple sclerosis. I'm thrilled. [NOTE: we ultimately exceeded our goal of raising $2,000!!!! Thank you givers!]
Someday, Abbey and I will do the ride again -- this time with more people -- we've already recruited others to ride with us!
Money raised on the ride and through other fundraising efforts are pooled and distributed to fund research to find a cure -- millions of dollars in grants have been distributed to Wisconsin researchers and others around the world.
We learned on this year's ride that the National Multiple Sclerosis Society has funded $550 million in research since 1947. Sounds like a lot of money, but that's nothing -- today I noticed WI's largest hospital had revenues of $600 million in 2000 alone. If we are spending $200 billion in Iraq each year, that's about $548 million per day.
Speaking of international relations and ms (bike rides against ms). While driving our bikes through the Wisconsin countryside, I observed:
* Too many to count moms, dads and their kids standing beside the road, on the curb, in the driveway, on the porch sharing smiles and words of encouragement;
* 3 large signs urging that the troops be brought home (including a really large one on the east bank of the Rock River);
* 2 Impromto beverage/water stands, unassociated with the NMSS support teams, setup up be generous amazing WI farmers;
* 2 French flags flying on rural WI porches.
The french flags made me smile and I felt a little saddened as I thought about the number of USA flags Abbey and I saw flying in all of Berlin, Prague and Vienna during May -- none! And then there would be another smiling face encouraging us.
While I felt like I fell down a flight of stairs yesterday, today I felt great. Continuing to drink large quanities of water made all the difference.
Someday, Abbey and I will do the ride again -- this time with more people -- we've already recruited others to ride with us!
Money raised on the ride and through other fundraising efforts are pooled and distributed to fund research to find a cure -- millions of dollars in grants have been distributed to Wisconsin researchers and others around the world.
We learned on this year's ride that the National Multiple Sclerosis Society has funded $550 million in research since 1947. Sounds like a lot of money, but that's nothing -- today I noticed WI's largest hospital had revenues of $600 million in 2000 alone. If we are spending $200 billion in Iraq each year, that's about $548 million per day.
Speaking of international relations and ms (bike rides against ms). While driving our bikes through the Wisconsin countryside, I observed:
* Too many to count moms, dads and their kids standing beside the road, on the curb, in the driveway, on the porch sharing smiles and words of encouragement;
* 3 large signs urging that the troops be brought home (including a really large one on the east bank of the Rock River);
* 2 Impromto beverage/water stands, unassociated with the NMSS support teams, setup up be generous amazing WI farmers;
* 2 French flags flying on rural WI porches.
The french flags made me smile and I felt a little saddened as I thought about the number of USA flags Abbey and I saw flying in all of Berlin, Prague and Vienna during May -- none! And then there would be another smiling face encouraging us.
While I felt like I fell down a flight of stairs yesterday, today I felt great. Continuing to drink large quanities of water made all the difference.
Tuesday, July 29, 2008
Heat
The weather forecaster says it's gonna be hot this weekend in Wisconsin, hottest days of the year.
What does heat mean for someone living with ms you ask? Lets put it this way, doctors used to use a hot water tub to assist diagnosis, before MRIs, before spinal taps. Doctors noticed that a person living with ms, may experience symptoms like numbness or renewed numbness, weakness or faint feeling, vision issues, even dizzyness in hot water -- the coroner noticed these people were also the ones whose spinal chords had the plaques (immune system induced scars/damage). Yeah. During 2002, I tried to run in the spring and as the spring turned to summer, I stopped running because as my mileage increased, I'd gotten to about a mile and a half, I just felt really unsafe from symptoms that emerged as my body temperature increased.
In the weirdness that ms is and fortunate for me and as my doctor said a few years ago, "[you] seemed to be getting healthier". I haven't been experience the heat issues like I used to. That's not to say I haven't, just not as pronounced.
The miles on the bike in the sun on the hottest days of the year sorta thrust a gut check -- makes me want to pledge twice as much cash for my ride as I thought I'd do at http://main.nationalmssociety.org/site/TR?px=2024772&pg=personal&fr_id=7830.
What does heat mean for someone living with ms you ask? Lets put it this way, doctors used to use a hot water tub to assist diagnosis, before MRIs, before spinal taps. Doctors noticed that a person living with ms, may experience symptoms like numbness or renewed numbness, weakness or faint feeling, vision issues, even dizzyness in hot water -- the coroner noticed these people were also the ones whose spinal chords had the plaques (immune system induced scars/damage). Yeah. During 2002, I tried to run in the spring and as the spring turned to summer, I stopped running because as my mileage increased, I'd gotten to about a mile and a half, I just felt really unsafe from symptoms that emerged as my body temperature increased.
In the weirdness that ms is and fortunate for me and as my doctor said a few years ago, "[you] seemed to be getting healthier". I haven't been experience the heat issues like I used to. That's not to say I haven't, just not as pronounced.
The miles on the bike in the sun on the hottest days of the year sorta thrust a gut check -- makes me want to pledge twice as much cash for my ride as I thought I'd do at http://main.nationalmssociety.org/site/TR?px=2024772&pg=personal&fr_id=7830.
Monday, July 28, 2008
Lee Rayburn show, 92.1 FM The Mic
I've never appeared on a radio show. Before listening to 92.1 in Madison, I found little use for commercial radio, mostly just listened to cds from referals and live shows, occasionally national public radio for news.
Today, I appeared on the Lee Rayburn radio show at 6:45a. I appear at the last 15 minute portion of the hour. Lee is a good radio host and it was really great that he invited me to join him on air. I'm alway eager to talk about how my InterferonB drugs now cost $2,240, even though they were only $980 per month 6.5 years ago -- worse the patent is expired, but the FDA can't license a generic version because congress and the President haven't empowered the FDA to do so; there is a generic verson in Europe (I hope this angers you as much me, probably equal to how angry you feel every time your health insurance costs incease, your out-of-pocket insurance costs increase).
And I was really happy to announce that people can support research for a cure and programs assisting us, me, all of us living with ms and the people who worry about us by supporting me on the Best Dam Bike Ride this weekend, August 2nd and 3rd, Pewaukee to Whitewater to Madison. (You can give at: http://main.nationalmssociety.org/site/TR?px=2024772&pg=personal&fr_id=7830)
Today, I appeared on the Lee Rayburn radio show at 6:45a. I appear at the last 15 minute portion of the hour. Lee is a good radio host and it was really great that he invited me to join him on air. I'm alway eager to talk about how my InterferonB drugs now cost $2,240, even though they were only $980 per month 6.5 years ago -- worse the patent is expired, but the FDA can't license a generic version because congress and the President haven't empowered the FDA to do so; there is a generic verson in Europe (I hope this angers you as much me, probably equal to how angry you feel every time your health insurance costs incease, your out-of-pocket insurance costs increase).
And I was really happy to announce that people can support research for a cure and programs assisting us, me, all of us living with ms and the people who worry about us by supporting me on the Best Dam Bike Ride this weekend, August 2nd and 3rd, Pewaukee to Whitewater to Madison. (You can give at: http://main.nationalmssociety.org/site/TR?px=2024772&pg=personal&fr_id=7830)
Tuesday, July 22, 2008
Soliciting
I think people really want to help others. It feels good to help people. I need help ending the effects of Multiple Sclerosis. None of us will end ms by ourselves. Fortunately no one has to do it alone. You can help Abbey and me make a difference ending the effects of ms as they affect me, 400,000 people living with ms across the country and make a difference in the lives of the millions of people that worry about someone living with ms.
Get that good feeling, probably equal to the degree to which I'll probably hurt on the 125 mile Best Dam Bike Ride [against MS]. Click this link: http://main.nationalmssociety.org/site/TR?px=2024772&pg=personal&fr_id=7830, then please make a tax-deductible donation there.
Thank you.
Oh, please share my blog broadly. I want more people to hear about how a drug, probably slowing my ms, now costs $2,240 per month, up from $980 per month in 2002 and that the patent is expired, but congress hasn't authorized the Food and Drug Administration to license generic biological drugs like the one I use.
Get that good feeling, probably equal to the degree to which I'll probably hurt on the 125 mile Best Dam Bike Ride [against MS]. Click this link: http://main.nationalmssociety.org/site/TR?px=2024772&pg=personal&fr_id=7830, then please make a tax-deductible donation there.
Thank you.
Oh, please share my blog broadly. I want more people to hear about how a drug, probably slowing my ms, now costs $2,240 per month, up from $980 per month in 2002 and that the patent is expired, but congress hasn't authorized the Food and Drug Administration to license generic biological drugs like the one I use.
Training at the Y
I like the YWCA down the road from our house. I'm grateful Abbey signed us up; its a wonderful resource for our community. We've been working out at the Y for the past few months. I wish I could say that we've been on a routine, but we've been so busy. Still, I peddled 6.2 miles in 20 minutes today with a fair amount of resistance, like I was peddling up a hill. I don't think I'd have ever completed the 50+ mile ride a week ago if not for the Y -- and I can listen to headphones with out breaking the law when I'm at the Y (thank you Flaming Lips and Olivia Tremor Control). Hopefully, I go again on Thursday.
Wednesday, July 16, 2008
20s and 30-somethings
Last night, the Wisconsin Chapter of the National Multiple Sclerosis Society held a social event at a bar in Madison (thanks Great Dane). This was the second event of the group. I was glad that there were other guys living with MS there. Still, women out-numbered men 3 or 4 to 1. I think this is about the ratio in the general public. I do not recommend doing something like going to Iraq to increase your chances of developing the disease as a strategy for meeting girls (Iraq veterans seem to be developing MS at an above average rate, something I worry about for my 5 cousins who served there, especially two first cousins who share with me a common great-aunt who died from complications related to MS in 1971, the year I was born.).
I think it was very smart to begin building 20s and 30-something groups. Really smart. No disrespect more seasoned individuals when I say here what someone said to me when I was first diagnosed, "you might find attending MS support groups difficult". This promotes isolation so I ultimately did get connected with a support group near me when I first returned to Madison, after living in Montana 6+ years, the last 3 with MS, 4 with symptoms and never before attending a group meeting.
I'm glad I got together with other people in my age group living with MS last night. From having attended support groups, I'm grateful for the science conducted at research universities where new drugs were developed that will help me and those at the bar last night to hopefully never see the years without the therapies too many know or knew like my great-aunt. [all those fundraising activities, like MS walks, rides... help fund the research and provide services to people living with MS, including helping to bring us together to laugh and learn together.]
I think it was very smart to begin building 20s and 30-something groups. Really smart. No disrespect more seasoned individuals when I say here what someone said to me when I was first diagnosed, "you might find attending MS support groups difficult". This promotes isolation so I ultimately did get connected with a support group near me when I first returned to Madison, after living in Montana 6+ years, the last 3 with MS, 4 with symptoms and never before attending a group meeting.
I'm glad I got together with other people in my age group living with MS last night. From having attended support groups, I'm grateful for the science conducted at research universities where new drugs were developed that will help me and those at the bar last night to hopefully never see the years without the therapies too many know or knew like my great-aunt. [all those fundraising activities, like MS walks, rides... help fund the research and provide services to people living with MS, including helping to bring us together to laugh and learn together.]
Monday, July 14, 2008
50 mile peddle
Abbey and I peddled 50 miles yesterday -- Middleton, through Madison, to Verona, to Riley, to Mount Horeb. Peddling is like walking with wheels.
Riding through Riley, I thought about a friend who is ill. She wants to see Riley. Someday she will see Riley and Abbey and I will be with her then. And of course then I started thinking about Social Security -- how it is there for people when they're older like my grandparents and how it is there for people when they're sick and can't work. In 2 weeks, I'll hit 10 years since diagnosis with ms. This is a milestone for many reasons including celebrating my continued ability to hold a job. That was one of the scariest things to me when I learned that I had ms -- that at 10 years following diagnosis, 90% of people are unable to work.
Well, if I couldn't work, even at age 36 I'd still be able to collect social security. It wouldn't be much, but at least I wouldn't starve, which is how the so-called "free market" used to treat people before people elected a congress and a president who created it.
Riding through Riley, I thought about a friend who is ill. She wants to see Riley. Someday she will see Riley and Abbey and I will be with her then. And of course then I started thinking about Social Security -- how it is there for people when they're older like my grandparents and how it is there for people when they're sick and can't work. In 2 weeks, I'll hit 10 years since diagnosis with ms. This is a milestone for many reasons including celebrating my continued ability to hold a job. That was one of the scariest things to me when I learned that I had ms -- that at 10 years following diagnosis, 90% of people are unable to work.
Well, if I couldn't work, even at age 36 I'd still be able to collect social security. It wouldn't be much, but at least I wouldn't starve, which is how the so-called "free market" used to treat people before people elected a congress and a president who created it.
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