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Me Without Healthcare….

Again, a rare occurrence to get political on my blog.  Because whether people agree with me or not, this is a matter of life & death.  The AHCA/BCRA must not pass!

I do not joke about death.  Yet, after asking nicely with no movement & amendments sure to get worse, I know no other way to get through.

The 13 authors don’t want to be called heartless or murderers then don’t pass this cruel bill.

Some may say it’s extreme, but I’m tired of playing nice & being ignored, & getting canned responses about how I must take more personal responsibility when I’ve taken plenty.

I’ll be sending this mock obituary through to my delegation tonight because I think they need to see the consequences of a “Yes” Vote:

Nicole “Nikki” S. died of chronic rejection in a Philadelphia hospital.

Nikki was born on May 25, 1977 in Watertown, SD to two loving parents. She graduated from South Dakota State University in 1999 with a degree in Journalism. After moving to New York City in 2000, & holding various positions, Nicole began working for WebMD as a Editorial Assistant for over 8 years. In 2010, she moved to the Lehigh Valley Pennsylvania & worked in insurance & customer service until she took disability in 2015 due to her lung disease (Lymphangioleiomymatosis or LAM). She received a double lung transplant in December of 2016.  Because of her lung disease & genetic disorder (Tuberous Sclerosis Complex) she was unable to have children.  However, she was an active volunteer in many nonprofits & a champion of medical research.

Her family & friends remember her as a kind & passionate person who strived to help others. Unfortunately, her life was cut short due to greed.  Her COBRA eligibility ended & unable to return to work, she was unable to afford another plan.  New restrictions on Medicaid caused significant hardship & she was unable to qualify.  As a result, she lost her ability to pay for her immunosuppressant drugs & aftercare (such as doctor visits, weekly blood work, bronchoscopies, & imaging) which led to chronic rejection.   

She also experienced kidney failure at the same time as one of her immunosuppressant drugs was unaffordable, her kidney tumors from her rare diseases returned, & she was unable to obtain a living donor because of fear of pre-existing illness clauses.  She tried dialysis but soon met a lifetime cap which only added to her health difficulties.  Her untimely death was entirely preventable.

In her free time, Nicole loved writing, documentaries, movies, & music.  She had a blog, wrote 2 novels as part of NaNoWriMo (National Novel Writing Month). She volunteered for the Tuberous Sclerosis Alliance, The LAM Foundation, & was also selected by the American Society of Transplantation as a Patient Ambassador. She sat on panels evaluating research proposals in her rare diseases. She also spoke to professional groups like the American Thoracic Society about her rare diseases. She also had written letters & visited the Capitol as she was able to over many years to push for support for medical research.

Pallbearers will be Senator Mitch McConnell, Senator John Thune, Senator Pat Toomey & the other members of the BCRA draft committee as well as Senator Mike Rounds. Since none of them will bother to show up, there will be no visitation.  A tree will be planted in a plot near her other family members in South Dakota & a memorial service will be held for friends & family.  Honorary pallbearers will be her family & friends.

Nicole, her family, & friends would like to thank Senator Bob Casey, & Senator Kirsten Gillebrand for their dedication in attempting to help Nicole keep not only her COBRA plan, but also attempt to ease her transition onto Medicaid by opposing the BCRA.

45 thoughts on “Me Without Healthcare….”

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  4. Nikki, I am very sorry that the hearts of ALL men do not line up with the vision established for this country as proclaimed by Lady Liberty. There is an Indie Arie song with a line that talks about men and hearts. I paraphrase: I want ALL men to see with their hearts and make decisions out of love. That is my prayer for ALL.

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    1. Ann that you recognize this and care helps immensely. I’m hoping there is enough of us who can bond together and stop this before it comes to pass.

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      1. This was incredibly moving Nikki, and I hope you get some positive response back from your delegation. While my health issues aren’t as serious as yours (migraines, autoimmune disorders) they caused me to have to take early retirement/disability five years ago. I worked as a children’s librarian in my town for 26 years so I’m qualified for health insurance through them. The problem is that although they pay 70% I have to come up with $250 a month. Because my financial circumstances have been greatly reduced, I wind up enrolling once a year for about a month so I can see my Dr. and get the prescriptions I need, before I have to drop off. It’s a horrible way to have to live.

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      2. Oh I know that autoimmune disease is hell to live with as I have friends with them. It is very hard being on disability and living on it. I know a few people who have to live that way or couldn’t get a plan through ACA either so I do understand however I don’t think going back to even more Draconian ways that existed prior to the ACA is the way to go. I send you virtual hugs – for me I did this not to prove whose circumstances are harder but to put a human face and story to the ramifications of this bill. I can only hope that it might stir more people in calling to oppose.

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      4. Yep I don’t either but it’s important to try as you know. We are all in this together and better to go down swinging if that’s what happens right?

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  6. I have a feeling I’ll be reading many more such stories in the months to come. I regret the lack of feeling Republicans are showing in their rush to overturn Obamacare instead of just improve it.
    Hugs

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  7. Reblogged this on K. D. Dowdall and commented:
    About Health Care in America. Compassion, Empathy, Caring, Hope, these are the qualities that make us human – without them we are put scavengers upon the earth. If this cruel, inhuman debauched “healthcare for the rich bill” is passed, we will know that many of us are indeed not human. Remember what you give to others – will also be served unto you.

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  9. Reblogged this on Picnic with Ants and commented:
    Nikki isn’t being dramatic, this is real. Many, many people will die if this health care plan goes into effect. Please contact your representatives and tell them to vote against BRCA.

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  10. Reblogged this on Picnic with Ants. People need to contact their representatives and let them know to vote against BRCA. We demand it.
    best to you always.
    w

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    1. Thanks Wendy. There’s many ways to advocate on this – call, fax, email, use social media channels – even if one is too sick to protest in person they can still make a difference.

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  16. Eloquently told. I, too, feel the same way and am sickened how these government officials are covered under health plans for life, yet feel no one else ought to have access to the same quality care.

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  17. As long as our government tries to provide health insurance for “market” and for “profit” companies rather than for people we will have problems. There must be a way to provide basic health insurance from a not-for-profit company. We seem to be the only large country in the world unable to figure this out.

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    1. I agree. I’m not saying the ACA is perfect, but I can’t afford to go back to pre-ACA days, medically or otherwise. I also want Medicaid to be preserved so I have something to qualify for when my COBRA runs out if I can’t return to work.

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    1. Yeah Andrea – I’m fighting for this hard pulling out all the stops except for protesting (not strong enough for that or the crowd factor). It’s just incredibly hard right now for all of us who really need our insurance to watch this happen. It’s sickening that the people in favor of this are so draconian and eugenic. Because this bill is even worse than before the ACA

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      1. I know.what makes it worse is the so-called “Christians” who support Trump and his agenda. I feel like I’m living in a segment of the Twilight Zone.

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      2. Haha, I agree totally. I once said this is Darwinism. The pro life right wing only care about life in the womb, once you pop out into the world, it’s every man, woman, & child for themselves.

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