Affordable Care Act, healthcare, Obamacare — January 3, 2017

‘Please don’t let my daughter die,’ mother who fears Obamacare repeal implores

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Having access to health insurance has saved this young woman’s life. Her mother doesn’t know how she will survive without it.

When I saw the subject line on the email, my heart dropped to the floor: “Please don’t let my daughter die.”

Jean had seen my call for stories about the difference the Affordable Care Act (ACA), or Obamacare, has made in the lives of Americans, and submitted the story of her 24-year-old daughter, Ellen. This is what Jean wrote:

What many take for granted, the health of their children, is a constant worry for us. Our daughter has Crohn’s disease, a chronic illness that requires she have Remicade infusions every 8 weeks to stay in remission. At close to $20,000 each, her medical costs are almost $150,000 per year. Without insurance, she can’t afford this. We can’t afford this. Can anyone? Repealing the ACA may work if you have a great job with insurance benefits but what is a college student to do? What is a new graduate to do? What is a person without a full-time job supposed to do? She doesn’t even have a chance at a job when one considers the cost of providing insurance benefits. She can work if she gets medical care, but without it, she will die. I spend most of my time looking for help and writing to representatives trying to get someone to listen. I just don’t understand — why does the GOP and Trump want to kill my daughter? She is a vibrant lovely person that deserves to live.

After receiving her email, I spoke with Jean. She explained that Ellen was diagnosed with Crohn’s disease at age 16, after six months of trying to figure out why she had gone from a healthy teenager who weighed 120 pounds to one who weighed 80 pounds and couldn’t even make it through the school day. She was sick all the time, suffering low-grade fevers, lethargy, headaches and severe pain. She was so thin she couldn’t even sit in a chair comfortably. Most concerning, she could not keep any food in her system, which caused the significant weight loss. Everything came right back out as diarrhea.

According to Mayo Clinic, Crohn’s disease is an inflammatory bowel disease that causes inflammation of the lining of the digestive tract. Crohn’s disease can be both painful and debilitating, and sometimes may lead to life-threatening complications including malnutrition.

There is no cure for Crohn’s disease, but with the right treatment it can be managed to minimize symptoms and complications. As Jean explains, when the doctors diagnosed Ellen they said, “Crohn’s disease won’t kill you, but malnutrition will.”

Once Ellen was diagnosed, the doctors tried various treatments, including one regimen that required her to take 100 pills a week. But after some trial and error they found a treatment that worked: Remicade. The drug is administered by infusion every eight weeks.

Within weeks of starting treatment, Ellen was able to keep food in her system again and returned to a normal schedule at high school. Her pain and other symptoms are gone, provided she sticks to her infusion schedule and manages her health. Jean says the difference is black and white.

It really means quality of life for Ellen. She takes care of herself to avoid flare-ups, but the infusions are essential to keeping her in remission. Now she’s working on her master’s degree, which she would not be able to do without her medicine.

But there’s no getting around the cost of treatment, which is covered by health insurance. Under the ACA, Ellen can stay on her parents’ plan until she turns 26. But what happens then? Ellen is studying to be an athletic trainer, which could mean a job that takes her from one college to another, with no guarantee of benefits. That’s what Jean fears the most if Ellen is unable to buy her own insurance without any barriers because of her pre-existing condition, something the ACA currently guarantees.

I don’t see any future for her if she can’t get insurance. How can you take on $150,000 a year? You have to hope you’ll find a full-time job that will give you benefits, but that’s not the way life is when you first get out of college these days.

I just keep thinking about this and I start crying, because it’s mind-boggling to me that I can’t make things better for my daughter. I’m at a loss. What can I do?

Jean has been actively writing to her state and federal legislators, begging them not to dismantle the ACA. You can do the same. Contact your Representative in the U.S. Congress HERE and your U.S. Senator HERE. Republicans are actively discussing repealing the ACA but have put forth no viable replacement plan yet, which would leave millions without insurance. Ask them to protect the access to care that Americans depend on.

Meanwhile, if you sign up for 2017 health insurance no act of Congress can take that away from you once you’ve signed a contract with your insurance company. Enroll before the January 31 deadline. Get covered today at HealthCare.gov.

Has Obamacare helped you or someone in your family? Tell us about it HERE if you’d like to be considered for a future post.

[Photo of Ellen courtesy of Jean.]

  • RebekahTheGrey

    Thank you very much for this. These stories are very important.

  • James Roger Bell

    These stories need to be broadcast far and wide. The Republicans are close to creating true “death panels”, only this time it won’t be some fictitious boogeyman bureaucrat created by Sarah Palin to frighten the Tea Party, but real corporate accountants determining the cost benefit analysis over how much they want to spend on a 16 year old with Crohn’s disease or maintaining their profit margin and maintaining the multi million dollar salary of their CEO. Mom has a real, valid and terrifying concern because we saw these horror stories before Obamacare. We know where the Pontius Pilate Republicans will stand……oh so much empathy for the “sick children”, then washing their hands they will turn the decision over to the tender mercies of the corporations. As with Pilate who turned the decision over to the mob, it is the innocent who end up on the cross and the criminal who goes free.

  • Trudy Hill

    I know of ONE person in WI that was using OCare, her spouse and mine suffer from a terminal brain disease. 10 weeks later she told me they were raising her rates to an amount she could not afford. I was quoted a discount but still left me with a price tag for me alone well over $200 a month. I pay as I go and already spend that much in meds so with the huge deductables I might be paying $400 a month for most of the year on my medical needs, no thanks.

    • DownriverDem

      You do realize it’s the insurance companies screwing you, don’t you? We need Medicare for all. The repubs will do nothing but make the situation worse. You can thank them.

      • Trudy Hill

        Ummm no . He got Medicare 2 years after diagnosis ( no matter what your age is.) SS began 6 mos after dx. Medicaid was a bugger to get through, took months and months to slug it out. The government did help in most areas for us, except insurance.

    • Emily Taylor

      $400 a month? You should feel thankful. My daughter also has Crohn’s and her medications ALONE are over $3000 a month (not counting frequent specialist visits and fancy diagnostics). Waiting to see how the Senate’s “secret” plan is going to make it possible to simultaneously protect my daughter’s life and health AND make a nice profit for their medical-insurance-pharma-complex donors. We’re completely at their mercy.

  • stephen

    my daughter lives with a heart transplant. with her pre-existing condition and high, complex and life-long medical needs, she, like Ellen, will find her life shortened at the very least without access to insurance. “our” congress people have their benefits, and don’t seem to care about the rest of us.

  • Ed

    It’s a little early to hit the panic button.

    • bluegal

      It’s not too early to kick Republicans right in the privates for causing this much anxiety for mothers with sick children. They can’t answer the “replace” part of their SEVEN year old “repeal and replace” promise? And they’re going ahead with a repeal vote next Wednesday because they just can’t wait to make imaginary “liberals” cry? Let me put on my heavy boots. I wanna kick them right in their pants zipper.

  • $37448299

    I have scoured the MSM for any similar stories, finding none that deal with realities to this level.
    Evidently the Grayson rule “if you get sick die quickly” is back in vogue with Republicans.
    If it was ever out.
    These selfish elites now think that they can repeal the ACA and that the results will not inconvienience them.
    They could be right.

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