Voices and Hope, or Lack Thereof UPDATED

The boys aren't going to school today.  I have no good reason except that as we went into the fifth hour of the health insurance hearing last night and they were still sitting there being well behaved it was all I could think of to give them….  It probably makes me a lousy mother but I was so immensely proud of them and I was tired and I love them and God knows I can't bear to give them any more Lego so I just whispered in Owen's ear "you don't have to go to school tomorrow."  His response?  "what about Friday too?"  I said, "just tell your brother about tomorrow."

Geesh.

Ernie and the boys picked me up from work yesterday around 1:00 and we took off for Springfield.  As we drove I read my little speech to the guys and when I finished Leo just gave me a sparkling smile which meant he was proud of me and Owen said, "that sound SO good Mom….and really believable too….I'm not kidding"

We got there, went into the Capitol Building and found the room for the hearing.  We went and sat down around 3:30 becaue it was already starting to fill up. I'm too weary to try to recount the whole thing here. You can read here and here.  The room was packed, with a lot of frustrated and angry people, and overall I felt the hearing was a kindness to let us express our stories that but it did not give me any hope.  In fact, honestly I feel less hopeful after hearing the attorney for HFS basically say there was no way it could be overturned.  This is crazy…it makes no sense.  Lately all I can think about is the Emperor's New Clothes….  Everyone wants to make sure they're saying the right thing….it doesn't really matter whether there are clothes or not….

To me the basic problem is that the RFP was inherantly flawed because it required applicants (for the HMO plan) to have HMO services in place by January 2011 for all 102 counties.  Nobody does. Nobody.  Not Blue Cross, not Health Alliance, not anybody.  So how could ANYONE have fit the criteria?

The map of the areas of the state that are serviced by Blue Cross/Blue Shield would be laughable…except that it makes me sick to my stomach.

It was after 8:00 when Naomi Jakobsson kindly let some of us personally impacted by the decision testify.  I say kindly because I know those we were speaking to on the committee agreed with us and our speeches would not do anything to change things.  But I had told my boys that it is important to make your voice be heard and they had stuck through all those hours so damned if wasn't going to make my voice heard.  I shortened it a bit because of the time but here is in essence what I said:

My name is Cynthia Voelkl.  I have worked for the University of Illinois since 2001 and have been a patient at Carle Clinic for many years.  My husband and I have two young sons—they are all here with me today—(and here I added "and if two boys ever deserved an award for sitting through the last several hours it is them—and everybody laughed and clapped)–and for a long time we primarily used Health Alliance and Carle Clinic for the normal range of childhood checkups and the like.  It was in 2004 however that my husband was diagnosed with a particularly aggressive form of prostate cancer.  He was still in the 40’s which is young for prostate cancer and we were as shocked and overwhelmed as anyone is in that situation. We moved ahead though and he went through surgery, radiation and two years of hormone therapy.  Then for another two years we hoped the cancer was gone for good.  In 2008 however we found out that was not the case and he went back into treatment.  He will continue to need treatment for the rest of his life.

In the last three years in particular we have worked very closely with many Carle doctors and nurses.  My father declined into the haze of Alzheimer’s and died in May of 2008.  Later that year we moved my beloved older sister into our house.  She lived with us for the last three months of her life and died of bile duct cancer in 2009.  The week before she died we found that my husband’s cancer had metastasized into his bones.  We were, of course, devastated.  He went into a new phase of treatment and I focused on my elderly mother who between grief and serious health issues was rapidly declining.  A few months later she died in February of 2010.

If I have learned anything through the last few years of losing loved ones however….it is that I will do absolutely anything I have to do for my family. Anything at all.  We have strong bonds with our Carle doctors, because with many years of treatment there are shared good times and shared bad times, there has been laughter and there have been times when they just let me cry.  However, if we must—we will go to other doctors.  I have learned that we are stronger than we could have imagined.  We will do whatever we need to do.

But the problem isn't just the loss of the personal relationships we have with our doctors.  I have not had a raise in four years and the furlough days last year reduced my income as well.  However, I have not complained about those issues because I have felt fortunate to have a good job. But my salary doesn't go that far for a mortgage and groceries and the care of two young boys and the co-payments on medical treatments and prescriptions.  Those days of $5 co-payments on prescriptions are long gone—especially when talking about medication for my husband’s cancer treatment.  If we are not able to renew our Health Alliance plan I do not know how we will afford my husband's treatment.  It took us an hour and a half to drive here today from Champaign.  The cost of coming here multiple times a month given the cost of gas…it would be impossible for us to handle both financially and logistically.   And yet if we switch to an Open Access Plan I do not know how we could possibly handle the expenses.  My husband’s treatment can cost thousands of dollars a month.  To have to pay 10-20% would be absolutely impossible on top of the increased premiums.  And as we look to the future, the expense of his treatment will only increase.

The change in insurance plans, as currently described, will devastate my family both emotionally and financially.  I beg you to consider our situation—because I know we are just one family; there are many more like us. 

I ask you to please help us.

 Two other people spoke after me, one couple dealing with serious cancer issues and one mother dealing with treatment for her autistic son.  It was heartbreaking.  After that I swept the boys out, it was after 8:30 and we'd been sitting there for over 5 hours.  I snapped a couple of fuzzy pictures because well, I just had to….  We swept out to our car almost giggling with relief and exhaustion, stopped at a gas station to get some junk food for sustenance and headed off into the night.  The boys leaned back into their respective corners of the back seat and went to sleep.  I was tired but wound up.  When we got hom Leo went up to bed and Ernie poured Owen into bed.  I was to tired to watch tv so I went upstairs and read without really taking it in….Ernie watched bad tv and then came up and we laid there talking for a while.

I don't have high hopes that the State will do what is right and correct this inequity.  Everyone is too busy saying they did their job correctly to actually consider whether large swathes of the State will indeed have access to somewhat affordable managed care.  But I said my piece, my boys were magnificent and in the end, as Owen said, "it was a very good day."

Owen's plea for help in the fifth hour:

You can hear a bit of me on this WILL-AM newscast. (this link no longer works, it's updated continually)    Of course they say Ernie has lung cancer instead of prostate cancer (that was the person after me) but that's o.k……and you can tell I'm starting to get teary!