It’s so complicated…

The President of the United States  was quoted as saying, “Nobody knew healthcare could be so complicated”.  Nobody knew.  Nobody knew?  NOBODY KNEW??!!!  I think my brain may have ruptured a tad bit with that statement. I know a lot of people who knew healthcare was complicated.  They know how complicated it is because they live with it every day.  People living with chronic illness never catch a break when it comes to insurance.  We are made to jump through hoops every time we try to refill prescriptions.  People with acute illness or injury find out quickly how difficult healthcare can be.  Determining what is and is not covered can not only be frustrating, it’s frightening.

Getting sick is hard enough on a person’s body, emotions, family, income, etc.  Add in the complications of healthcare, and it’s overwhelming.  Have you ever heard someone say how easily everything insurance related went while fighting an illness?  Probably not because there is always glitch.  Usually these glitches result when people don’t know the fine print of their insurance.  Insurance that uses the antiquated process of step therapy that makes you try the less expensive drugs before moving on to a drug that may be more appropriate for you.  It’s like taking aspirin for a infection, it may treat some of the symptoms, but an antibiotic would be a better choice.  Step therapy prevents patients from getting treatment they need when they need it.  For example, it took me almost 7 years before I was able to start a biologic drug.  I had to “fail” on several treatments before I could be approved.  Then it was another 6 years before I was able to get a Tier III drug which actually provided relief for my disease symptoms.  That is 13 years of pain, suffering, and serious joint damage.  Who knows what would have happened if that Tier III drug was given to me sooner? I didn’t know what step therapy was at the time.  I just knew that I had to try drugs in a hierarchy, starting at the bottom and working my way up.  I thought it was science, but it wasn’t.  It was an insurance company mandate.  Complicated to understand the results of this antiquated process.  Complicated to live with symptoms that were not relieved by lower cost drugs.

I’ve written about my fear of losing the ability to work.  This is a multi-part fear.  I fear losing my independence.  I fear giving up a career that I love.  I fear not being able to afford my mortgage and bills, including my prescriptions.  Now some people have written to me and claim that I am guilty of insulting people who are already disabled.  That has never been my intent….nor will it ever be. I am simply expressing my own personal fears not commenting on anyone else.  In my own life, I know that losing my ability to work is a real possibility.  I also know that if that happens, I most likely will loose the ability to own my home and car,care for my pet’s medical bills, and help take care of my parents as they get older.  It just stinks that people who get sick and become disabled often become poor.  They have to in order to qualify for Medicaid to help pay for medicine and therapies not covered by Medicare or subsidized insurance.  The whole process is complicated….and sad.

So as I listen to the news and hear politicians, who have outstanding medical coverage, bandy about how best to insure Americans, I feel my blood pressure boil.  Insurance is big business.  Pharmaceuticals is big business. Government is big business. We patients are just pawns in a complicated game in which these businesses continue to make money off of our illnesses. It’s wrong on so many levels that patients perspectives are not included in the discussions.  We are seen as drains on the system, instead of the unique, talented, able-minded citizens that we are.  Healthcare is complicated because big business wants to make money, while the government wants to spend less money….all while patients fight for their lives.  It’s so very complicated…VIhithjlp6tski_1_hd

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Kelly holds masters degrees in both Special Education and Speech-Language Pathology. She works full-time as a speech-language pathologist in both a public school setting and as an adjunct faculty member at a university, in Philadelphia, PA. She specializes in both autism and augmentative/alternative communication and took her skills to Uganda, Africa to start a special needs program for disabled children living in an orphanage in 2011. Kelly began experiencing symptoms of autoimmune arthritis in 1984 (while in her teens) but wasn’t officially diagnosed with autoimmune arthritis until 2001. Her first diagnosis was Sjogren’s syndrome. Eventually her diagnosis was changed to sero-negative RA and now Polyarticular Spondlyoarthropathy. She also manages thyroid disease (resulting from Graves Disease), fibromyalgia, renin-deficient hypertension, and disseminated superficial actinic porokeratosis (DSAP) on a daily basis. Kelly connected with other autoimmune arthritis patients via social media in 2008. She began volunteering with the “Buckle Me UP! Movement”, which evolved into the International Autoimmune Arthritis Movement (IAAM) beginning in 2009. Then became a cofounder of IFAA in 2013. She has represented the ACR on Capitol Hill as an Advocate for Arthritis, was a finalist in Wego Health’s Health Activist Hero awards in 2014, and speaks at various healthcare conferences as a patient advocate in the Philadelphia area.

5 thoughts on “It’s so complicated…

  1. Your perspective is so relevant and speaks to what my husband and I both feel on a daily basis. Please keep saying it out loud! Hugs to you and your furbabies from me and mine!

    Liked by 1 person

  2. I also feared losing my job. I still hate that I did. There is little that has happened in my life that equates to that feeling of loss. It has been almost 10 years now, and I still hate that I lost it. I hope you do not lose yours but know this despite how bad it scares you, there is always something else on the other side.

    Liked by 1 person

    1. Thank you Rick. It’s important to always keep moving forward. I’m hoping for 10 more years at least. That will give me 25 years in PA school districts….At that point, I think I could handle it. But I know I can never plan for it.


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