As embarrassing as it is to admit it this it is what happened. I waited years for a Democrat to become President. As the 2008 election approached I couldn't wait for Obama to take office. There was an overwhelming desire for real change. Obama had built a "grassroots" movement ready to demand it. Health care reform was inevitable. Or so I thought.
I was a single mom working as hard as I could to maintain full-time employment and to manage multiple sclerosis, a chronic, progressive, disabling disease. On top of that Pacificare, my health insurer, routinely denied me the ms treatments I needed. It was a second job. I had to call during work hours and it was hard to do my job when I had to spend so much time -- hours and sometimes days -- on the phone with Pacificare. It comforted me knowing Obama would be President soon and things would change. I wasn't asking for special treatment or anything. All I wanted was for Pacificare to have to follow the rules just like I had to. Nothing more. I waited every day for Obama to take office. I thought Obama would make it easier for me. I was wrong.
I understood I was among the lucky, in that I had health insurance at all. Yet it was hard to feel the joy. I wonder what life would have been like had I been able to spend my energy helping my daughter prepare for college instead of trying to cope with MS and fighting PacificCare.
It Is Rigged: PacificCare Always Wins.
Avonex is the most important medicine I take because it slows down the progression of MS by stopping or reducing number of new scars from forming on my brain. It is also very expensive. When my doctor first suspected I had ms because my left side went numb in November 1999 I had an MRI. The neurologist found 3 small scars on my brain. In April 2000 when I lost my vision temporarily I had another MRI. This time my neurologist said there were too many scars on my brain to count. She left a voice mail at my job with a definite ms diagnosis and prescribed Avonex. I started taking it. Since then I haven't had many -- if any -- new scars on my brain. (Which doesn't mean I DON'T have new symptoms and flareups!)
Disease Management Consensus Statement (.pdf) ..on controlled clinical trials in relapsing MS, those taking the medication had a reduced risk of disability progression, experienced fewer exacerbations, and showed a reduction in number and size of active lesions in the brain (as shown on MRI)...
ForPacificare, trying to deny me Avonex was a win-win situation; even though they would "lose" in the end and I would always get my treatment, Pacificare increased their profits because there is no retroactive treatment to pay for or even compensation for treatment withheld. And for me it was a lose-lose situation since I had to spend so much energy fighting Pacificare for my medicine, went frequent periods without treatment to slow ms progression (so my ms progressed), and had to go through the horrible side effects Avonex causes when not taken regularly. Another win for Pacificare is ultimately pushing disabled people like me out of the workforce and on to Medicare, saving Pacificare from having to cover them.
I explained much of my battle with Pacificare here: "My HCR letter to Pres. Obama may be going to the White House tomorrow!" And jpmassar did a fantastic job of explaining it here: Alyssa's story. Or Why Single-Payer Cannot Come Soon Enough.
I worked, fought with Pacificare and slept. I didn't want to be a burden. And I certainly didn't want to cause the deficit. I was told by my neuropsychologist, who gave me cognitive evaluations, that were I not in fact working full-time, she would not have believed I could have done it considering my ms symptoms. This was more than a year before I stopped working. I managed to keep working until January 29, 2009. We all work hard.
Shortly after my retirement I got involved in activism around the health care bill. I was already disappointed with Obama's choice of cabinet members and his weak stimulus. And it wasn't looking good for health care reform. Obama had taken single payer off the table. And it had just come out that Obama broke a long time campaign promise and made a deal with big pharma that for their support he would continue Bush's ban on Medicare negotiating for better drug prices. I fought as hard as I could for a strong public option. Only to find out later Obama had made a deal giving the public option away months earlier. If Obama had only told the truth I would not have wasted my energy fighting Republicans for things I should have been fighting Obama for.
I went to an OFA meeting and asked them if they were going to fight to pass a health care bill with no public option that mandated people buy junk insurance. Of course they were.
To put it mildly, I was not happy when Obama's health care bill ended up making Pacificare considerably stronger.
Health Insurance is Not Healthcare Instead of retiring the health insurance industry and its actuarial tables and profit margins and wagers, Obama 'saved' the health insurance industry and enshrined it in perpetuity as the Health Insurance-Industrial Complex.
Since so called health care reform Obama has repeatedly offered to cut Social Security and Medicare. This adds insult to injury. First instead of helping me Obama saves Pacificare and after Pacificare helps push me out of the workforce Obama focuses on cutting Social Security and Medicare benefits and stigmatizing recipients.
I was ready when Occupy began in Oakland October 10, 2010. When we did with Occupy what Obama asked us to do during his 2008 campaign (and what OFA refused to do) -- tried to "make him do it." -- Obama repaid us for doing what he told us to do with DHS, FBI agents, tanks and swarms of Oakland police (which we always have enough money for). Instead of providing me health care in return for me doing what he asked, in less than two years I've been arrested twice and sprained my foot, ankle, hand, knee and broke my finger running from OPD.
Austerity Comes for my Medicine.
I fought with PacifiCare for almost thirteen years; then in December 2012 during annual open enrollment Alameda County Employment Retirement Association (ACERA) dropped Medicare recipients from group health Insurance, except Kaiser, and referred us to Extend Health Insurance Exchange. ACERA promised the exchange would have comparable plans. But open enrollment had closed by the time Extend Health Insurance fixed the bug which caused them to drop everyone covered by Medicare due to disability (as opposed to those with Medicare because they had reached age 65) so I was unable to enroll in Kaiser.
When I called Extend Health Exchange I had to list all the medications and treatments I was currently on and the benefits specialist checked to see which plans covered them. What happens if I got something in the middle of the year? Would I have to wait till open enrollment to find a plan that covered it? AND the insurance company can stop covering medications anytime it wants! What a sham. That is not insurance. I was told that NONE of the Extend Health's insurance plans covered ANY ms treatment!
The Extend Health rep told me to check Medicare because part B might cover it. I did and Medicare Part B covers it when given in a doctors office.
I called and spoke with the billing person at my neurologist's office. I told her I was forced into an exchange. She said a lot of people were being transferred into exchanges. She thought that was because employers were getting ready for 2014 when Obamacare exchanges would kick in everywhere. I asked about getting my shot at the office. Almost everyone with ms takes some kind of shot -- she said if they gave people the shots they wouldn't have time to do anything else. When I told people this was an example of early Obamacare exchanges Obamacare supporters disagreed. I guess we will find out, but it is a Medicare Exchange and Obama did "negotiate" away affordable MS treatment in either case.
Obama agreed to:
1. Oppose importation
2. Oppose rebates in Medicare Part D
3. Oppose repeal of non-interference
4. Oppose opening Medicare Part B...
Now they Want Me To Beg
I called ACERA and spoke with the benefit specialist who said he would call the supervisor at Extend Health Medicare Exchange and see what could be done.
An Extend Health representative called me back the next day and said they could help me find charities that might help pay for Avonex, because none of their plans covered it. I was, and still am, furious. Extend Health wants to cover up the fact that they only provide junk insurance by supplementing it with a list of charities! When I asked the Extend Health Insurance Exchange representative how they could call themselves a Medicare exchange and not cover any ms treatments they had no answer.
Extend Health Medicare Insurance Exchange actually brags about referring people with ms who have health insurance policies to charity!! Because she receives help covering the cost of Copaxone from a co-payment assistance program sponsored by Teva, the drug manufacturer, her monthly drug payment is $10.
I told the Extend Health representatives numerous times "I have insurance. I will not call charities and beg for medicine to help you hide the fact that you sell junk insurance. I will not help ACERA hide the fact that they kicked me off group health insurance and forced me into an exchange that does not provide affordable coverage for MS treatment."
On top of that the Extend Health licensed benefits advisors who are trained to help you choose a plan are supposed to know what they are doing; but as you will see they don't. A friend of mine, jpmassar, checked Extend Health Medicare Exchange's website. He found that some plans do cover Avonex.
I checked as well and found that a couple plans did indeed cover it but the co-pay was to be $1,200 for each of the first two months. If I paid out of pocket my total costs for two months (including the $125 monthly medicare premium and the Exchange policy premium) would be $3250. The third and subsequent months Avonex co-pays would be $185. I called Extend Health back and the rep said this was right. I asked how it could be so expensive and the rep asked me how much my co-pay was previously. I said "Zero." He said that is when I had good insurance. Two other Extend Health reps said that very same thing.
Gulf of experience between sick and healthy. Obama's “Cadillac” Insurance Penalty:
21% of People in MA Still Forgo Necessary Medical Care
When I asked the ACERA benefits representative if other people were having trouble with the exchange she said "Only the ones who needed a lot of treatment." Her attitude was who cares about us sick/disabled people. She totally missed what insurance is supposed to mean. She pays premiums because a disaster could happen to her or a family member. Obama's rhetoric and policies encourage cost saving over any concern for holding the health industry accountable or god forbid having any compassion. The ACERA worker didn't see it as in her interest that insurance be made to cover treatment. Rich people can pay for it. We can't.
The Acera representative's response reminded me of how some of my co-workers responded when due to my ms symptoms I got reasonable accommodations. Nothing big but things like a comfortable chair. I like most of my co-workers but many would tell me how lucky I was and wonder if they could say they had something so they could get a chair! I don't think they knew what they were saying actually meant. A chair for a chronic progressive disabling disease didn't feel lucky or like I getting over to me. Some co-workers seemed to think I was taking something from them. Obama has spent over four years repeating Republican propaganda about Medicare and Social Security and how people like me cause the deficit. I believe my former co-workers thinking was shaped by the right wing propaganda Obama continuously uses.
Obama's policies, such as the "cadillac" insurance penalty and his emphasis on high-deductible polices, focus on rewarding healthy people with no co-pays for certain preventive procedures while demanding that sick people should have to pay more for expensive treatments -- thereby causing them to be more "discerning" when "choosing" expensive medical treatments like Avonex. As if I had a PhD in neurological studies and could discern what MS drugs my doctor should prescribe! All Obamacare supporters will see is they saved $10.00 a month on a prescription. They don't understand that they should be paying premiums because they too could become chronically ill or disabled and they would want to live with dignity if that happened.
Obamacare creates one standard of care for the rich and another for the working class by intentionally increasing “consumers” (patients) out of pocket costs and by taxing “Cadillac,” health insurance plans. The idea is that a high share of cost will make people more discerning when “choosing” medical treatment discouraging“overuse” and taxing good health insurance that doesn’t make patient do the same. So Obama lied when he told you you could keep the insurance you have. Your employer will be taxed for quality insurance - the kind unions fought for and have given up many pay increases to keep.
The reason I thought I was a Democrat and why I believed Obama would be on my side was because of programs like Social Security, Medicare, FMLA, and ADA and it was the party that didn't call women welfare queens (at least not until Bill Clinton). I believed in the power of OFA because I thought it was a real grassroots organization. I didn't know OFA would choose loyalty to Obama over principles and solidarity.
Glen Ford calls Obama the more effective evil and says that Obama can accomplish what republicans can only dream of. I agree.
Obama accomplished what Pacificare could not do in 12 years of fighting me. Instead of helping me, Obama took my ms treatment.
As of now I do not know when I will get my Avonex treatment. I missed it in December and didn't bother trying to get it in January after I found out I would have to stop in Febuary (it didn't seem worth the side effects).
* Thanks to jpmassar for editing and being a person who puts principle before loyalty to politicians. Even though we don't agree on some aspects of Obamacare he still helps me voice what I have to say.