HORROR STORY: MOVING STATE TO STATE TO BEAT LIFETIME LIMITS

Note from NoProvisions: Lyn's story reminded me of few months ago when Graham-Cassidy (the first one) was in the spotlight. CNN had a healthcare debate featuring Sens. Bernie Sanders & Amy Klobuchar and Lindsey Graham and Bill Cassidy.  The Potter family wanted to know how their daughter (who endured two bone marrow transplants) would be protected with their proposed legislation.  Sen. Graham proudly told the Potter's that in South Carolina, they'd be fine (narrators voice: they wouldn't).  Trouble was, the Potter's live in Ohio. 

So what Senator Graham was saying was, "Get sick? Come to South Carolina. Quit your job (which provides your insurance), leave your family and community ... find a new oncologist... and once you settle down, hopefully you'll be able to get that life-saving, time-sensitive treatment you were counting on).  

Ridiculous. 
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Thank you for trusting me with your story, Lyn. 

My story began in 1987. In my mid 20’s, a nurse, recently married. I suffered a severe grand mal seizure that set in motion a catastrophic illness that has affected virtually every body system, left me severely disabled, with not 1 but multiple, life threatening conditions. I was also diagnosed in 2012 with multiple myeloma --currently an incurable cancer affecting plasma cells in bone marrow.

I have spent a good portion of the last 30 years in one hospital after another- often for weeks or even months & in spite of having employer sponsored insurance when my illness first struck, the financial devastation has been enormous. I had met 2 lifetime limits already & was close (very close) to a 3rd when ACA protections went into effect. Pre-ACA  --when I wasn’t in hospital fighting for my life -- I was fighting insurance companies, fighting waiting periods where nothing was covered and fighting life time cap limits. The only way we survived was having to move to a different state, husband change jobs, & suffer thru the long waiting periods (years) where nothing “pre existing” was covered even though we were paying huge premiums.

Essentially locked out of the system, I was able to finally get on SS disability because in order to save my life, I needed to be admitted for multiple week stay to a specialty hospital for lung disease in Co. I had to have medicare in order to go since my husband's employer coverage was still in waiting period, but, as we found out quickly, even with medicare, we were still left with medical bills that I will never be able to pay off- not even in 3 lifetimes.

It’s enormously stressful to be sick. That stress multiplies 100 fold when you’re sick & fighting insurance companies. I was very close to losing my husband's employer coverage yet again when ACA was passed & even though I do not get my insurance thru the ACA, the protections it provides are saving my life if repealed, I will be over lifetime cap limits immediately & am terrified of being -once again- locked out of the system, while requiring weekly chemo to keep my cancer in as much check as we can. My husband is at retirement age so there can be no more job changes, no more moving to get coverage.

Repealing ACA protections will cost lives of all like me, fighting catastrophic illness & I am terrified. I have managed to somehow survive against all medical odds, but after more than 30 years of this battle, not sure that the stress from once again having to fight ins companies won’t be enough to bring my battle to an end. Nobody should have to go thru this. Nobody. 
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-- ​Lyn H.