RA Blog Week 2018: Day 5 (Another Wildcard): Politics

Honored to be a part of this 4th annual RA Blog Week 2018.  Thanks to Rick Phillips for RAblog_week_RABADGE2018(2)organizing and inviting me to participate.  Today’s topic is not one I was able to respond to, so I decided to do another wild card.  Here is today’s prompt: Politics – Health is always a hot item for debate. Regardless of the candidate or party, how do you feel about having so much debate about issues. Is debate helpful or detrimental to our health?

Politics.  I was home sick today. I had the stomach flu. I was molded to my couch as the Senate hearings played on.  Honestly, I think the whole thing added to my nausea.  Politics in general, makes me nauseous.  Over the past 5 years, I’ve taken more of an interest in politics.  I did it because of my advocacy work.  I admit, I was fairly mind blind to the role our government takes in our healthcare.  Once I slipped through the rabbit hole, I was hooked and this is what I have learned.

Politicians don’t understand patients.  Not. At. All.  They learn about patients needs first from Pharmaceutical companies, THEN from Insurance companies, and finally……they hear from us, the patients.  Most of the patients I know, don’t have big bucks.  Pharma and Insurance companies do.  Pharma companies develop drugs to a) cure/remediate diseases and b) make money.  Insurance companies work hard to a) insure their customers b) keep costs down, and c) make money.  Patients, well we are trying to a) support ourselves and b) feel healthy enough to live life.  Often, the big money companies make donations that “influence” the way a politician votes.  That influence sometimes works in patients best interest and other times, it does not.  It’s all about the bottom line.

A big issue in politics is the support given to the antiquated process of Step Therapy.  Naively, I always believed Step Therapy was based on science.  That doctors had to prescribe certain drugs in a specific order.  For example, most RA patients start out on plaquenil, then methotrexate, before moving on to a biologic drug.  This was my progression and that of some others that I know.  In my mind, being prescribed a biologic drug meant that my disease was progressing or out of control. NOT the truth.  Biologic drugs are expensive and do have significant side effects.  Insurance and pharmaceutical companies agree on prices via a tiered system.  Drugs on tier 1 are more attractive to insurance companies so pharmaceutical companies work hard to get that to happen.  Unfortunately, this causes drugs on tiers 2 and higher to not be prescribed as easily.  Personally, I had to go through 7 drugs until I finally started on a biologic drug that helped me feel somewhat better.  It was a tier 3 drug.  My wait was because my insurance company would not cover it until I failed a certain number of tier 1 and 2 drugs.  Oh wait, let me restate that.  Drugs on tiers 1 and 2 had to fail me before I could move on to a tier 3 drug.

Now insurance companies will say the reason behind step therapy is that it keeps costs lower because the drugs are less expensive on tier 1 AND safer for the patients.  However, in order for drugs on tiers 2 and 3 to make money, they hike their prices up to get rebates from insurance companies.  So a drug that is priced at $18,000  a month might not even come close to that cost in production…..but the patient still has a percentage copay on that inflated cost.

I was able to speak with former Congressman Patrick Meehan’s healthcare aide. She understood that I went through years of pain to find a drug that worked but said since there is not “proven science” to indicate what drugs I work with individuals that it was too hard to try to find a way to change the process.  I remember saying that patients are not always predictable in how we respond to medication.  There are obviously things we know about medication and what it will do for example, aspirin reduces fevers, ibuprofen reduces swelling.  Biologics are high tech/cutting edge medications but what works for one patient doesn’t work for another.  I have friends that claim one biologic drug is a miracle but it did NOTHING for me. We are not carbon copies, but instead of trying to prescribe drugs that may work, we have to take drugs that fail us for years to “prove” a higher tier drug is called for.  It’s frustrating.  It’s painful. It’s just unfair.

Over the years, I’ve gone to DC to represent the American College of Rheumatology.  I’ve 23031688_377115279408170_6624450213049569914_ndone this three times.  Some of the things I’ve advocated for are better regulations for Benefit Plan Managers, controlling and reducing drug costs so more patients can have access, reimbursing doctor’s offices that provide infusions, and providing scholarships to entice more medical students to pursue rheumatology as a career. I love going to Washington DC to advocate for patient’s rights.  I hope to do it a lot more when I retire.  Politics drives me crazy, but as a person living with multiple chronic illness, I know that I need to raise my voice so that those who vote on bills that directly impact my healthcare and my life.  I will no longer be silent.

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To read more blogs on politics click here:  http://radiabetes.com/blog-week18/alt2.html

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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.

4 thoughts on “RA Blog Week 2018: Day 5 (Another Wildcard): Politics

  1. I was different. I was immersed in politics for 20+ years and I found that at the end of the day I had to give it up. Today I tired to watch the hears a little bit and was so frustrated. I did not even find the theater compelling. I am a grandfather, and all i could imagine was my granddaughter sitting there sometime in the future.

    I loved politics when it was good nature fun. You knwo no hate, y9ou got me this year, and I will get you next. Now lets have a beer. For me today was a camera war. I prefer entertainment theater.

    As for health issues? we have sold out our public infrastructure of research. One we built with good will, tax dollars and the knowledge that my good will someday be your good.

    Liked by 1 person

  2. I’m thankful you have the strength and courage to advocate for us. I’ve been trying to plan a fun touristy trip to the DC area for a couple years now and mustering the physical energy for that is daunting. For now I write lots of frustrated emails to representatives that don’t seem to represent me. Hopefully I will someday find a more useful option.

    Liked by 1 person

    1. The majority of what I do is emails because being on Capitol Hill is exhausting. I highly recommend to look into it. You can rent a scooter. ACR accepts applications in June and July for their September event

      Like

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