Jennifer England

I'm an asthmatic freelance bookkeeper so I didn't have insurance until January 2015. I used the ER when I had a bad asthma attack. August 2016 at 39 years old I found a lump, and September 9 got the call that I had breast cancer. An aggressive form called Her2+ which has a very high recurrence rate. I did chemo then had a mastectomy, they also found thyroid cancer so that was removed too during all this. March 8 2017 I got the call that I am cancer free, for now, but I still get Herceptin infusions every 3 weeks to reduce recurrence chances. I need these treatments or it's likely to come back! The ACA has literally SAVED MY LIFE!

-Jennifer England, Kent, WA

Mark Lundsten

This video was created by Mark Lundsten and his neighbors in Anacortes, WA!

https://www.youtube.com/watch?v=aQcTuZhf6GE&feature=youtu.be

Rose

Rose

 For 25 years I had excellent employer-based health coverage. Literally at age 19 I got a full-time job at a tech company and I stayed at that company for 23 years. I had virtually no pre-existing conditions because I’d always had coverage. I had truly excellent health insurance through my employer , so I saw doctors frequently over the years for preventative medicine and to treat my routine sports injuries (I was quite active athletically and had epic weekend adventures camping, hiking, rafting, skiing … kickboxing, triathlons, etc.) 

About 20 years in to my employment I started to suffer the early symptoms of what was eventually diagnosed to be a chronic, incurable auto-immune disorder. I struggled to keep working for a few more years – trying biologic medications which suppressed my immune system and left me vulnerable to infection, and dragging myself to work even when I felt awful. I did it, because I loved my job and my career and my company. After 3 years my immediate manager made it clear that my new disability and symptoms were not conducive to me keeping my job. I wasn’t ready to give up yet, though – I battled to keep my job in every way that I knew how and when it became clear that it was a losing battle, I parlayed my 20+ years of experience over to a better-paying job at a competitor. 

My disability continued to progress and it started to truly affect my ability to do my job, and it took me a long time to realize just how much it was affecting me and the quality (and quantity) of my work in a VERY fast-paced and challenging environment. My new management made it clear that my disability was not conducive to me keeping my job – even with an accommodation. Was it legal for either company? Nope. Is there any way to prove discrimination due to my diagnosed disability? Nope. It was a huge shock to learn that despite 25 years of experience and expertise and stellar reviews and feedback from my peers and colleagues that I was now worthless on the job market due to the unpredictable nature of my symptoms and my ability to function. Because I was single, I didn’t have another income to help soften the blow. After 25 years the lucrative, fun, and challenging career I had -which provided good medical, vision, and dental benefits – was over in the Spring of 2013.

For the first several months I paid a large sum of money to continue my employer-benefits through COBRA. It was about $700 each month. (I had no idea how COBRA premiums were calculated – ouch). I stayed on COBRA for about a year until I figured out how to find a private insurance plan through the ACA. Having the ACA – no pre-existing condition clauses, no lifetime caps – was like a miracle. I had been aware since my diagnosis in 2008 that I was at risk of being uninsurable. Instead, I was able to find a plan very much like my old employer-based plans for far less than the COBRA rate. I was able to keep seeing my specialists, had really good prescription coverage .. . even vision and dental! It was nearly seamless! What a huge relief!

And then .. . unfortunately (?) I was awarded my Social Security Disability benefits in October 2015. I was relieved, because yay! Income! What I didn’t know was that once you are awarded SSDI benefits that you are automatically enrolled in Medicare. You don’t get a choice. Now instead of my ACA policy which – while expensive, got me great coverage for my very high medical needs given my disabling conditions – I’m actually paying far, far money out of pocket for far worse coverage. I have doctors who will not treat me because they cannot afford to see Medicare patients. I have no dental or vision coverage. I have a Medicare part D (and F!) supplemental plan, but the co-pay for one of my medications is $18,000 per year. That’s not a typo. I stopped taking the medication with a monthly co-pay of $350 even though it was effective for one of my diagnoses, and I was just notified by my Sched D insurer that they have decided that the one muscle relaxant which is effective for me will no longer be on their formulary (after covering it for the past 18 months). My co-pays for prescriptions totaled roughly $25,000. Plus another $8500 in Medicare premiums. Plus vision and dental care out of pocket. I was temporarily approved for six months of the most expensive medication, for now. If they don’t renew that program then I cannot afford to take the one medication which both treats and prevents the irrecoverable progression of the disorder which attacks my spine. It’s terrifying to think about.

To recap: I paid $700 for COBRA coverage which was sufficient for my needs. I switched to an ACA plan which was something like $400 per month for similar – and great! coverage. Now? I’m paying more than $700 per month for Medicare Parts A, B, D and F PLUS a ton of out-of-pocket co-pays . . . for no dental or vision, terrible prescription coverage, and I can’t see some of my carefully-chosen specialists. I’m seriously considering marrying someone – anyone – with good employer-based insurance because I cannot afford to neglect my symptoms and I cannot afford to pay any more money than I already am.

The ACA was wonderful, for me. For 25 years I worked hard, paid my taxes, kept active and fit. I did all of the things people say that we should do to take care of ourselves and to be responsible healthcare consumers. Heck, I went to the doctor a bit more often than most because I wanted to stay healthy! 

Now that the ACA is at risk I cannot imagine how the millions and millions of people who have finally been able to seek care, and have been able to sleep at night without worrying that an accident or a bad illness will make them and their families homeless – what are they thinking, now? It was such a blessing. I know it wasn’t without flaws, and I know that some people saw increases in premiums. I’m also aware of how much negotiating and compromise that it took in order to get the ACA passed at all – and with half of Congress and the House doing everything that they could to kill it the whole time. We’d finally made some progress towards a truly civilized society. Access to affordable healthcare should be a right, not a privilege.

Now that even Medicare is on the chopping block according to Paul Ryan, I wonder: do they want us all just to die? I mean, I’ll end up losing my house and going bankrupt first, but when that money runs out I’ll become a burden to taxpayers and then I will die from lack medical treatment and coverage. It’s inevitable. Our country had finally started to move past that archaic thinking! Now with the ACA and Medicare at risk I fear for my future and the futures of millions of sick and disabled kids, adults, and seniors. Apparently now expendable according to the new administration and a majority of the Senate and the House.

Rose Bigham, Newcastle, WA

Debbie Rosemont

The ACA has allowed our family to have insurance and healthcare as we run two businesses. As entreprenuers we have created jobs, provide valuable services and are active in our respected communities. It is good to know we have the ACA to cover our family since we are both self-employed. It is an important for us to have access to afforfable and comprehensive health insurance and coverage.

Debbie Rosemont, Sammamish, WA

Mark A

My wife and I were in between jobs. I freelance and was on her health plan. For a few months we were in "limbo" but we signed on to the ACA and got were covered for those few months we were "jobless". They covered everything, it was amazing! Thanks Obama. 

Because we used the ACA, we are strong supporters. We understand how important it is. It's a "safety net" for folks like us. It's life or death to others. Can't imagine folks not having health insurance in America. If anything bad happens you can lose your home. Crazy.

Mark A. 

Marziah K

My daughter has finally been able to work again and now has medical insurance. But until recently she was saved by ACA coverage. She had a pre-existing condition and several providers turned her down. An accident and several days in ICU at Harborview left her with crushing debt, around $100k. If Trump can take advantage of bankruptcy multiple times, I've come to the conclusion she should too.

Marziah K

Liz B.

My husband started working in the US over 15 years ago on a H1B visa. He was always covered for medical expenses by his employer. I however had been a seasonal worker for a couple of years and had experienced the difficulty in getting individual coverage. I had used Planned Parenthood for most of my regular checkups. After we married, Michael wished to be seasonal like me which we didn't see as a problem, but due to a blood disorder called Factor 5 Lidein, no one would insure him. The first time we have both had insurance together in many years is due to the inclusions of ACA, and no penalties for pre-existing conditions. I cannot imagine going back to non coverage now.. the older you get, the riskier it is.

Liz B., Seattle, WA

Jennifer Hedge

My husband lost his job and went to work for himself. It was important to me that we could keep our same doctors. I signed us up for ACA. Fast forward to this past summer, I was diagnosed with breast cancer. I have a 5-year old and a 9-year-old. I was terrified and also so thankful to have insurance. I was very lucky that I was able to seek treatment at a top notch facility. I have been at an appointment every week and sometimes many a week for the past 6 months. Medical care is expensive. Cancer is expensive. I shudder to think what would be happening with me if I didn't have ACA. I was also able to have genetic testing done which allowed me to make informed decisions for my own care and to have some idea of what risks my daughter and my cousins faced. I'm part way through reconstruction and instead of worrying about getting better I'm worried and anxious that I need to speed up my timeline before the repeal. I'm also afraid of having a pre-existing condition and not being covered for future care related to my breast cancer diagnosis. Thanks to the ACA I will be a breast cancer survivor.

Jennifer Hedge, Seattle, WA

Gail Steinkraus

My family loves the Affordable Care Act! My grandson was born two years ago with a rare disease called Alagille Syndrome. It affects the liver, skin, eyes, kidneys, and heart. Ben is very lucky because so far, only his liver is affected, making his skin constantly itchy, his growth is very stunted, and he has painful bumps all over his skin. He has been on a feedings tube since birth. His parents have not had a full night of sleep since his birth, but have valiantly cared for him with love and devotion. We were so lucky when he received a new liver about six months ago. The surgery was long and scary. His Alagille Syndrome, which is characterized with very small veins and ariteries made hooking up his new liver very tricky. Because his surgery was so long his recovery was also longer than normal, almost three months in the hospital. My step-daughter and her husband have good insurance, but if it wasn't for the ACA, the limits on healthcare would bankrupt them. His care has cost well into the milllions of dollars, and fortunately for them, Medicaid took over after they had been in the hospital over 30 days. Without that, my step-daughter and her family would have had to declare bankruptcy to pay for the care for their son. Ben is now doing well, finally starting to walk at two and half years old because his new liver has finally kicked in to give him strength. But he still has Alagille Syndrome, so he will need medical care for the rest of his life. He did not ask for this disease, and did nothing to deserve it. Is he and his parents supposed to live in poverty because of it? His mother, my sweet daughter, has a brain tumor that will also need attention at some point. Will she need to choose between life and death because of insurance? I certainly hope not. I am begging all those who have the power, please do not end caps on insurance. It is life and death for my family.

Gail Steinkraus, Tacoma, WA

 

Connie Compton

Because of the ACA I am able to cover my daughter, age 24, on my health care plan. My daughter underwent a bone marrow transplant at 11 months of age and has multiple medical challenges that will follow her for the rest of her life. She also suffers from severe migraines, which could be related to her early history or could be genetic, and requires multiple expensive prescriptions to prevent and treat them. I worry what will happen to my daughter if the ACA is repealed and pre-existing conditions are no longer covered.

Connie Comptom

Renee

Before the ACA my health insurance cost over 1/2 of my monthly income. The ACA cut that in 1/2. So that is one very real concern. But even bigger than that, I'm worried about my very livelihood. I'm a lactation consultant and I work for myself. Parents now expect that lactation services should be covered by insurance because the ACA has that mandate. If that is taken away, it could mean that the way I make a living will be destroyed. Not to mention all those families who won't have access to expert lactation support. Another point is, I've been in practice for 20 years, I own a home (still paying a mortgage of course!) and by most standards I'm doing fine. The repeal of this law could put me in a whole different category.

Kiona

My father was extremely ill; he was hospitalized for months at a time. He lost his job, and therefore was going to lose his insurance. He couldn't find anyone to cover him because of his pre-existing condition. Between the time his Cobra expired and his next hospitalization, Obamacare went into effect. I don't know what we would have done had he not been able to receive coverage. Our family owes the extra years we had with him to Obamacare. He would have died much sooner without medical treatment.

Ashley

I serve as the Executive Director/CEO of a mental health nonprofit. I grew up relatively poor, but worked hard and had the opportunity to go to college with the help of some scholarships. Later, I made it to graduate school, and then I worked my way up from a lowly intern all the way to "the top" of the nonprofit career ladder. I’m a good picture of the “bootstrapping” young American that the GOP still believes in and holds up as a shining example of how the American Dream lives on. (They won’t mention it, but certainly some of my privilege as a white, cis, mostly hetero woman helped along the way.)

 

Now I’m a CEO. A CEO living with anxiety, depression, and a chronic, lifelong thyroid condition. Without the Affordable Care Act, I would have no insurance coverage because my employer is unable to provide it. Even with insurance coverage, without the protections of the ACA I would likely go without the care I need more often than not – because these are all “pre-existing conditions”. Before the ACA, I went months (sometimes a whole year) without the labs I needed to test my thyroid levels. There were times where I physically couldn’t get out of bed because the extreme fatigue crushed me like a lead vest. My hair thinned. My hands shook with tremor to the point where I could barely read my own handwriting. Mental health is crucial, too - without my antidepressant, I live in a fog of malaise and irritability. I can’t concentrate. I feel empty. And my anxiety threatens to rise up and choke me. 

 

I dread the prospect of going backwards. The things that help me be well and able to manage my health so that I can remain employed and be a “productive” and “contributing” member of this American society are the very things that the GOP is working so doggedly to take away. Healthcare matters and as a hardworking American, I deserve to keep mine - both my care, and my health.

Cara

My soon to be ex-husband who I no longer live with lost our family coverage last February when he lost his job with the family company he had worked for for 13 years. As a single mother with three daughters I could not afford private insurance (I am a real estate broker working on property management - thus an independent contractor with lots of business expenses and not a lot of income). For the first time ever I am on Medicaid (as of last May) for myself and my daughters. (5, 8 and 14). Though it is not nearly as good as my previous private insurance I pay no Co-pays for doctor visits nor prescriptions. We would have zero health coverage without ACA. I am highly thankful!

Amy

The Affordable Care Act allowed me to take my kids and leave an abusive partner. 

I think this is a big story in itself as being financially trapped is often a major part of domestic abuse, especially when you have kids and have been a stay-at-home mom. Abusers control their wives in many ways, suppressing their confidence and ability to work outside the home. For me, my husband would have been threatened that I would gain independence or meet other men, plus the household would never have been up to his standard if I did work. He didn't appreciate anything I did at home and with the kids.

Another aspect of domestic abuse is that victims become sicker being under such longterm stress. Mine didn't physically hit me, but the emotional, psychological and verbal abuse, threats and coercion, really impacted my health and I spent 4 years undergoing tests for CFS (ME) - mostly fatigue and brain fog. I could never tell my doctor what was really going on because I was tied to his health insurance. I couldn't share that I was scared for my life for the same reason.

Before leaving him and moving in with a friend I found out through a Domestic Abuse clinic that myself and the kids would be eligible for Obamacare. I managed to keep us insured without interruption.

At present we are all in therapy which is absolutely vital, and my therapist is helping me with PTSD. My son is also under the care of a physician who is helping him with Anxiety and ADHD (including medications), as well as another place to vent his emotions. I have finally been able to tell my doctor the extent of the psychological stress I have been under and it has given her a new perspective on my symptoms and treatment. At present we are still healing and that will take some time, but I know I have to get working as soon as possible. I am a single mom 100% of the time as the courts will only allow limited supervised visitations with their dad. He's also paying very little Child Support, and even that is irregular. The support we have received through Medicaid and Obamacare has been a stop gap at the time we have been the most vulnerable. There are many boundaries to leaving an abusive relationship but Obamacare removed a crucial one.

Eden

My husband (the breadwinner in our home these days) works for a small entrepreneurial company that, unfortunately, provides no benefits to its employees. I have couple of relatively minor pre-existing conditions in terms of cost to my health insurance company, but they still kept me from getting coverage the last time I was without employer provided benefits back in 2006. The ACA is the only way I can get healthcare on the individual market.

Emily

My name is Emily, I'm 31 and I live in Seattle with my husband and young daughter. Three years ago, I was diagnosed with the genetic disease, cystic fibrosis.  My lungs will never function like a normal person's. I will have my lungs slowly lose function until I die of this disease, barring any other circumstances. CF has a median lifespan of 37 years. I am a very unusual case to have made it to adulthood without diagnosis. 

CF came into my life just a few years after the passage of the Affordable Care Act. During this awful time, it never even occurred to me that just a few years earlier, a diagnosis would have also led to extremely narrow, if not exclusionary, access to health insurance. For the rest of my life, I will have a pre-existing condition that will make me a liability to health insurers. 

Incredibly, the same year that I found out about the disease, a new drug - the first to address the underlying cause of CF rather than managing the symptoms- was made available to a small number of CF patients who had a particular gene mutation. It is one of the two genetic mutations I have. This drug will slow the progress of the lung damage that exacerbates my condition. It costs over $300,000 a year. If I want to outlive my life expectancy, I will have to go on this drug in the next few years. It is not a cure- it is a daily medication that I will have to take for the rest of my life. 

Meanwhile, I started receiving care at the local adult CF clinic in my city. There is no shopping around for care. There is only one place to go- because people with CF didn't used to live to adulthood. The cost is astronomical. As probably one of the healthiest patients they see, the sticker price for my annual care approaches $50,000. If the disease progresses, more frequent visits, more drugs, and potential hospitalizations could easily triple that figure in a single year. The good news is, with their care, my health is stable and I will likely long outlive the average lifespan- and even more likely if I start this new drug. 

I took the protections of the ACA for granted, and so I only considered my stable health and our happy family when my husband and I decided to have a baby last year. I have a beautiful and healthy baby girl, thanks to the care of high risk specialists that I was able to access over the course of my pregnancy.

Katie

Provisions in the ACA also positively impact us. I'm worried about losing those provisions and I am concerned that coverage via SCHIP for developmental, neurological and mental health will be curtailed in 2017 or 2018.

SCHIP (state children's health insurance program) is why my husband and I are able to access a high level of therapeutic interventions for my sons with Autism Spectrum Disorder. Even with our "Cadillac" employer provided plan, the OOP costs for ABA and other therapists are out of reach for a modest income family. We have Apple health for the boys as secondary insurance. We used to have a higher income before having two kids with special needs made it impractical for both of us to work FT and get them the help and education they needed. 

Anne

I have a Medicare advantage plan and if I didn't have it available to me I'm not sure what I would do. I have multiple preexisting conditions and am dependent on about 12 different drugs to just get put of bed and function. If I lost that or had a large deductible I wouldn't be able to afford my medical care. I have the double concern because I am on Social Security disability. 

On ACA, everything was less money out of my pocket. I had total knee replacement surgery in March. I expected to be there for 2 days but due to pneumonia and a collapsed lung it was 8 days. My portion to pay was only about $1,500. I'm still paying but I wouldn't have been able to afford it without my plan.

Sara

To have affordable insurance for me who has a pre-existing condition and my children after I was laid off last year and moved into being an independent consultant. Getting insurance from my husband's work would have been 3 times as expensive as what we are paying now.