Not Done Yet

Dealing

I am hearing that the "public option" is being dealt away from health care reform / health insurance reform. This is probably very bad news.

It concerns me that when the cost of health insurance goes up because no one can be denied coverage anymore or worse dropped because they learn they've got a tough medical diagnosis (like ms or cancer...), that supporters of reform will be blamed for the health insurance price increase. Making the system universal and more efficient would have helped control costs and it concerns me that people won't be hearing that, just the blame.

I am also hearing that there is a possible compromise in the dealing that would lower the age ability to "buy into" medicare coverage. That could be an exciting development, depending upon how low the age is lowered.

I am hoping that House Speaker Rep. Pelosi will be bold in the dealing and fight for expanding medicare access, create a pathway for FDA approval of generic biological drugs and eliminate the donut hole in medicare part D.

Friends are dealing with the third death from cancer of female friends in their 30s this year. 2009 has been a difficult year.

I guess we have much to be thankful for. Thanks to government action, no one is losing their savings when banks are failing. Thanks to government action, Abbey and I have very high quality water (we had it tested). Thanks to government action, I am not worried about the safety of the food I just purchased (and if there was a reason to be concerned, it was because there wasn't enough government regulation). Thanks to government action, there will be new research funding the search for cures (including for multiple sclerosis). Thanks to government action, the price of a pack of cigarettes went up and fewer people will be smoking as a result helping to keep us healthier. Thanks to government action, I could write all a letter and tell you about it via "snail mail" for less than fifty cents (unlike the more than $10 I pay to send the same news via FedX or UPS).

Ill

I am home ill from something, hopefully just a cold. I almost never miss work, even when I don't feel at my best. Being home ill gives me room to remember back in the 90's when colds coincided with new ms induced symptoms. I am hopeful I won't have any new challenge tomorrow. The maker of my medicine would probably like to claim credit, but my improved resilience over the decade is probably even more on account of my improved lifestyle/environment.

PHARMA, and the big drug companies overstate themselves. When you hear that health insurance and health care reform will hurt the search for cures, remember:

1. Publicly owned drug companies have a responsibility to their shareholders to maximize returns that trumps healing people.
2. Drug companies' need to maximize profits gives them cause to not develop new and potentially more effective medicines if a new medicine reduces profits (think don't compete with yourself -- to re-enforce the point, google "bayer pain reliever", the maker of the first pain reliever seems to still only be making the pain relieving aspirin. Bayer is a German company and in Berlin, the Bayer label is everywhere -- At $2,800 per month, the cost of my Bayer Interferon-B medicine, I wonder for how much Bayer advertising in Berlin I am responsible?

3. Drug companies spend more money advertising than they do developing new medicines.
4. The biggest funder of new medicine is the US National Institutes of Health (NIH). Through the NIH, government helps make our lives better. The NIH issues grants to hospitals and research universities that help find treatments and cures (and this is really really important because developing new medicines is expensive and most are duds. In order to continue advancing the science that finds cures, the NIH socialized the risk of new medicine development. Publicly owned drug companies and their shareholders have been burned trying to develop medicines.).
5. In our globalized world, science advances planet-wide. The future of science isn't dependent on any one country, including the United States. The future of science isn't dependent on any one pharmaceutical company either.
6. You should ride your bike with me during the 2011 "Best Dam Ride Ride" [Against MS and for an MS Cure]. It was a great experience during 2008 and during a break during that ride, I learned that the National Multiple Sclerosis Society has granted more than $550 million to help fund a cure.

I hope this settles the question about the effects of new medicine development after health insurance and health care reform.

Health care reform and health insurance reform means saving lives, preventing bankruptcies, unleashing the creativity of those who will finally be able to launch new ideas and businesses liberated from the current sickness industry and saving current businesses from the health insurance nightmare of annual double to triple inflation price increases.

Please call your US Senator to encourage their support for reform! Thank you.

Got Liberation?

I was trying to make the Packers' condition a metaphor for something about health care reform. I couldn't. The Packers forgot the blocking part about football. And about the opposite of blocking: rushing the quarterback.

The House Passes Health Bill.

This is really great news for people living with MS. The Congress is finally creating a pathway for generic biological drugs, after the Senate votes affirmatively too. And I will be able to buy health insurance again. And medicare will receive the money to pay doctors properly. And some doctors' pay will be tied to keeping people healthy rather than getting paid because we're sick or broken. And there will be new programs to pay for the training of more doctors and nurses. And there won't be a maximum lifetime health insurance coverage anymore. And now having health insurance won't mean having to be tied to any individual person or a job -- for some this will be liberating.

I just got liberated from miserable internet access. I just got liberated from having to drive my car to see great music because I think I will walk to see Yo La Tengo during January.

Toes

I've been doing so well for so long, sometimes, briefly I'll forget that my spinal chord is pocked from the gnawing of my immune system's past "episodes".

During Tuesday evening, I started negative noticing my right foot more than I typically have during the past few years. Wednesday morning, I was aware that I had toes on my right foot, but it was like they were not attached to my foot. The balls of my right foot had significantly reduced feeling -- negative feeling. Walking seemed like my foot was a sponge. Placing my step was a mental exercise, visual guidance was important so as not to trip, fall. I realized that on Sunday, I had strange feelings of emotional waves, briefly, unexplained. Monday, I got choked up at the sight of a television commercial while eating breakfast -- I hadn't considered it at the time, but I remembered that sometimes during previous "episodes" of civil warfare, it wasn't unusual to more easily get emotional.

Thursday morning, I awoke fully aware of my right foot and my toes, but some numbness persisted. I was glad that my toes felt attached again. Abbey and I went to the Y after work on Thursday. I had not gotten much physical activity of late, working longer hours and remodeling our new home and all. I rode 7.62 miles during 22 minutes with the bike to 12 resistance. I couldn't believe it.

When we got home from the Y, I felt pretty good, but I struggled putting my right foot in front of my left. I asked Abbey not to walk behind me up the stairs out of concern that I might trip, fall and knock her down rolling.

I thought about walking with a cane again today, not that I need to use one at this time. My walking is better than Wednesday now.

Made a first draft 2009 mix:

Track Title	Artist	Album
Waitin' For A Superman	Iron and Wine	Around The Well [Disc 1]
Don't Forget Me	Case, Neko	Middle Cyclone
Never Had Nobody Like You	Ward, M	Hold Time
Belated Promise Ring	Iron and Wine	Around The Well [Disc 2]
Whole Lotta Losin'	Monsters Of Folk	Monsters Of Folk
Quiet Dog Bite Hard	Mos Def	The Ecstatic
Roses	Mos Def Feat. Georgia Anne Muldrow	The Ecstatic
The Palace At 4 am	Newman, Carl 'A.C.'	Get Guilty
Overjoyed	Circulatory System	Signal Morning
Nothing To Hide	Yo La Tengo	Popular Songs
Deeper Down	Wilco	Wilco (The Album)
Such Great Heights	Iron and Wine	Around The Well [Disc 1]
82 Onewasjohnny	Todd	Singles
Avalon Or Someone Very Similar	Yo La Tengo	Popular Songs
While You Wait For The Others	Grizzly Bear	Veckatimest
Summertime Clothes	Animal Collective	Merriweather Post Pavilion
The Right Place	Monsters Of Folk	Monsters Of Folk

Running to the light

Will those of us so hungry for health care, health insurance reform, be a bug, zapped when we think we reached the light?

I can see the prospect of reform, it is right there, behind Sen. Max Baucus. I know it is there, but I'm not sure what it looks like yet. I know what I want it to looks like. I think I'd like it if if looked like the government health insurance my grandparents have, medicare. I think I'd like it if it looks like medicare with a prescription drug benefit that has no donut hole -- I'd happily double my medicare taxes for it to cover me and my family too; I think my employer would too, probably.

But are we getting blinded by the light of reform?

I am concerned that sick people like me, will get a health insurance public option -- a public option that is a group of other sick people, crowded separately by ourselves without healthy people to optimally spread risk. Yeah, we can celebrate that we can finally buy health insurance, but will it be ridiculously expensive and ridiculously inadequate with big co-pays and coverage holes (especially if our government doesn't subsidize it, as our President promises)?

I am concerned that reform will not help bring new medicines to sick people like me, as quickly as we need, as is possible -- sure there will now be a pathway route for FDA approval of generic biological drugs, like for the medicine I use (that now costs $2840 per month, up from $960 per month during 2002). My Congresswoman, whom I like, seems to have successfully scored 12 years of "exclusivity" for biological drug makers. This is a multi-billion dollar gift to an industry that spends more money advertising than on research for cures -- and in our country, we've socialized (yes, socialism) risk developing new drugs because so much of the cost to develop new medicine is bourne by public research universities and public funding from the National Institutes of Health (NIH). If you are a corporate officer at a drug making company or maybe if you own stock in drug makers, congratulations. As a patient, I can expect drug companies to maximize shareholder value and to withhold or retard development of new, potentially more inexpensive or more effective medicines to heal sick people like me if it means competition with drugs they already market (no competing with themselves).

If you need 16 ounces of water to drink and the person holding the gallon water bottle hands you a 4 ounce glass filled with water, what do you do?

I will call my Senators to ask them to support health care reform. Ask them to support the kind of reform sick people like me need, the kind of reform healthy people who aren't sick yet need. You should call your members of Congress too!

11 years 2 years

Last week marked 11 years of living with ms. And it was my niece's second birthday. All of it, everything, what a momentous month, July!

I am a little frustrated by congressional progress causing health insurance reform and health care reform. That should be disprogress or unprogress or illprogress? I have great insurance and I want everyone to have great insurance too, everyone to get quality affordable healthcare when they need it.

Where are the North Dakota populists? Will Montanans again elect Max Baucus in 5 years? Montana deserves better representation.

I am sending another message to NMSS activists. We need to visit with our elected members of congress, to sensatize them to the needs of patients. Sensatize...

Last week started with this news: • Research links broken marriages with chronic health problems

I've met all kinds of people in different kinds of 'marriages' since I began living with multiple sclerosis. I have met people who have remained in a bad / dysfunctional marriage in order to continue to stay on a spouse's health insurance. I have met people who have remained "legally" married in order to continue to stay on a spouse's health insurance, even though the couple really isn't a couple anymore, living separate lives. I've met committed to each other couples who are legally divorced (but they wear rings), even with kids in the house, so that the person with multiple sclerosis can absorb the huge medical debts and declare bankruptcy so as to not destroy the family. Our country needs Health insurance reform, health care reform.

I think there are counselors who will sometimes recommend legal divorce to help keep people together if one of the spouses has a catastrophic medical condition with ever mounting debts (then bankruptcy).

I have been posting this message variously (and people are actually visiting this blog):

My medicine that cost $960 per month in 2002 now costs $2800 per month. The medicine hasn't gotten more effective. The U.S. patent expired in 2007. The drug is owned by Bayer Pharmacutical and in Germany, a person can buy a more inexpensive generic. The reason there is no generic is because the FDA has not been empowered to license generic "biological" drugs. Please ask Rep. Baldwin to support HR 1427, which would help create a pathway for safe generic biological drugs. You can call representative Baldwin at (608) 257-9800; she sits on the congressional committee handling this. Please ask her to support HR1427 -- for too many people, their insurance requires them to pay a percentage of their prescription as a co-pay, sometime as much as $900 per month for their medicine affecting who might even get the medicine s/he needs. We don't have PHARMA's radio and tv budget (if you seen/heard the recent PHARMA ad blitz) -- you can help make a difference for thousand of ill people and yourself because this is one of the reasons your insurance is getting so expensive. Thanks from a Middleton neighbor.

Talk to your member of congress. Our country needs Health insurance reform, health care reform.

You could be one illness from bankruptcy

Did you call your Senator yet at 888-436-8427? [Support a public insurance option!] In 2007, nearly two-thirds of all personal bankruptcies filed across the country were linked to illnesses, loss of income or high medical bills, according to a survey published in June by researchers at Harvard University and Ohio University. Of those cases, 78 percent of the debtors had health insurance when they first got sick.

Spring

I ran 5 kilometers today.

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"!

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.