Entitled to Life interviewee Stacy Davis-Stanford is a perfect example of a person in the Utah coverage gap. After an auto accident Stacy has struggled with a neuro-degenerative disorder that remains untreated because she can't even afford the expensive series of tests needed to diagnose it (and can't get disability Medicaid without a diagnosis). But far from just descended into what would be an extremely justified case of self-pity, Stay has become an inspiring advocate for Healthy Utah, and for the disabled nationwide. And far from being just a sad story, Stacy is an ACA wonk who could cold make any of the so-called experts in the opposite look ridiculous without even working up a sweat.I had never met Stacy before we both spoke at Town Hall meeting during the 2014 Utah general legislative session (a meting attended by only six Utah legislators, though all were invited). Her story was one of the biggest reasons I cried myself to sleep that night, and why I couldn't let this go. I'm honored to call her a friend and activist colleague, and she has become one of my heroes for the way she continues to fight for the lives and rights of people who need help. She has connected with many disabled people in the current or former coverage gaps of their states. She was kind enough to share some of their stories with me. They are shared here in the words of the people who told them, as compiled by Stacy:
Konden, Arizona
when my family and I fell in the Medicaid gap (my wife and I have 5 kids). I took a full time job at northern Arizona university in flagstaff. The job paid 38k a year, which meant I just barely earned too much for state health insurance, but too little to afford my health care benefit. I finally had to drop the job after a year, as it put me 7k in debt. I'm currently on the job market again and now teach part time for two universities and a community college. Being part time, I have no benefit options. But now that AZ has expanded Medicaid, we have insurance and my daughters have been able to have well check ups. Healthcare is necessary so that families like mine can more fully contribute to our community.
Danielle , Florida
I am uninsured because I’m not ‘Officially’ Disabled and trying to get insurance on Healthcare.gov was way too much money to pay that I don’t have (since my state did not expand Medicaid). I have Fibromyalgia, Bipolar Disorder 1, Bulging disc in the L4-L5, asthma, and Generalized Anxiety disorder. I also have an undiagnosed neurological problem which I won’t be able to do anything about until I have insurance. I also have to give up some of my medicines that cost more like my preventive asthma medicine. Not having the insurance that I so badly need prevents me from going to different doctors for my different problems. I can only afford to see my family doctor and he has to play Psychiatrist, pain management doctor, and many more. I am in debt with both the hospital and My doctor which I’m not sure I will be able to ever pay off. If I had insurance, I could go to a neurologist and get an EMG done like my doctor wants me too. I could be able to get the tests I so badly need done to see what is causing my episodes I have. I could find out what’s going on with my body and get the treatment I need. Insurance could pay for the majority of my medicine. Insurance could help me slowly pay off my debts, the debts that no 23 year old should be in. Insurance could help me live and not just barely get by.Elo, Indiana
My name is Elo, i'm 19 years old, and I'm from Indiana. I've been sick since 2010, at the age of 16. Its important to note that the onset of my sickness was immediate - I literally became disabled overnight. Which is the second important thing to note - that my sickness is disabling, and I am unable to work.
Being disabled (at least to my extent) means I'm too ill to work. Which means not only am I not able to get insurance through my workplace, but also that I have no income with which to pay for insurance.
I have applied (and been denied and thus reapplied) For disability, and am currently waiting on a court date. Disability comes with medicare, but until i am accepted I won't have any insurance coverage, I am left with the insurance coverage options which are covered by the state or government.
I have three options currently, obamacare, my states health plan which is called the healthy Indiana plan, and Medicaid.
Starting from the top: Obamacare. Because I don't have a job or much of a history being so young (or for whatever reason), the only health care option I was given was a 200 dollar monthly payment or so, with a 6,700 deductable. This is unrealistic and wont help me pay for day to day doctors appointments or medications.
So the next option was the healthy Indiana plan - which has a 6 year waiting list, JUST to get a decision. I need health care right now, I can't wait 6 years. By that time i should have disability, so that was out too.
This left me with medicaid, which I applied to, first by being under 21 years old. Unfortunately I was told that because I didnt live with my parents, or even in the same state, I was not eligible for this part of medicaid. So I tried to apply again, this time under being disabled.
It's at this point that I should mention that my state has not expanded medicaid. I did have medicaid for 2 or so years, being under 18. However as soon as I turned 19 I aged out. (unfortunately, before I could get a surgery to help with my pain).
In any case, I applied for medicaid based on my disability, and I recieved a denial letter. The reason for denial was that my illness, which has no cure, which does not magically go away, my illness which I have had for nearly 4 years now - was deemed that it would not last more than one year.
I'll repeat that. My chronic, 4 year illness, was in their eyes, not supposed to last the next year.
The reason for this denial was quite simply, because they did not expand medicaid and have to deny many people who obviously qualify for it and meet all standards and quotas.
I have several illnesses and disabilities. My main diagnosis is Fibromyalgia. Fibromyalgia can vary from being rather mild - to where a person is sore most days and needs to sleep and relax more but can function normally, to severe - where they are in constant almost excruciating pain and cannot leave the house or work.
Mine falls more towards the severe end of the spectrum, with only being able to leave the house once or twice a week and recovering from these excursions (all of which must be under 4 hours but are normally not even an hour long) for several days.
I also have a possible diagnosis of Lupus (although I lost insurance before I was able to properly research how much that was affecting me), as well as endometriosis (which i was also supposed to have surgery for, before losing insurance), as well as anxiety, depression, and a possible thyroid issue (once again - undiagnosed thanks to lack of insurance).
My quality of life would be completely changed if I could get medicaid or other insurance coverage. I'm not saying I would be fixed - I fully expect that I will be disabled and in pain for the rest of my life - but maybe I would have less pain, or more better days, or less symptoms to deal with. I could have a plan, and emergency take as needed medications to have to rely and lean back on, as well as things that could help my overall every day health.
I wouldn't be fixed, but if I had insurance? I could be better.
Janalyn, California
Why are(were) you uninsured?my dad is on personal disability and is unable to work due to a botched hernia repair 5 years ago. my mom doesn’t work (stay at home mom for 5 kids). we don’t make enough money to pay for health insurance. only since my parents have decided to get a divorce and my dad cut off all financial support have we been able to get Medi-Cal. i am now on Kaiser Permanente through Cal-Optima.
What is your illness/disability?
i was diagnosed with Fibromyalgia in February of 2010. i also deal with severe migraines, a hip bursitis, and chronic ear infections (8 sets of ear tubes since the age of 4). i am working with doctors currently to find out why i am losing the use of my legs as well.
How does lack of insurance impact your health?
for the past 6 months i have been having episodes where my legs will feel 3 or 4 times the size they’re supposed to be and i’ll have painful tingling up and down my legs. i am unable to walk when this is happening. the episodes usually last 15-30 minutes long. i have severe pain in my muscles and joints, especially in my right leg, along with horrible . i have been unable to see a doctor and figure out what is wrong. i have nothing to take for the pain either. the numbness and inability to walk has been happening more frequently and for longer periods of time. i am unable to work.
Your mental health?
i have OCD, Major Depressive Disorder, and General Anxiety Disorder. pain is a huge trigger for panic attacks and depressive episodes. i overdosed a bit over a year ago, trying to get rid of a migraine that lasted over 4 months. i am currently not on any medication because i cannot afford it.
Your finances?
i am unable to work. my mom is starting up a day care in our home, but currently we only have two kids that we watch. we make less than 1000 a month for 6 people. my mom’s church provides food assistance and the rest of our money goes to mortgage payments and emergency medical. we’re hopefully going to be able to get Cal-Fresh now because my dad has stopped financial support.
Are there other ways your life is impacted by lack of insurance/how would things change if you could be insured?
i rarely leave my house because of how bad my pain is. when i am able to work with doctors and get medication for my pain and social anxiety, i am better equipped to see friends and extended family.
Alysianne, Oklahoma/Kentucky
(26 years old)
Why are/were you uninsured?(26 years old)
I didn't have a kid so in Oklahoma, where I was living until recently, I had no insurance.
Kentucky just changed to allow coverage for low income people.
What is your illness/disability?
PTSD, mood disorder, hypermobility (frequent joint dislocation, chronic pain, mobility issues, etc), back issues/neck issuesHow does lack of insurance impact your health?
I wasn't able to get any treatment of any kind for 6 years, and slowly developed what may be seizures- which almost killed me. Just finally getting ready to see a neuro. It was $400 to walk in the door without insurance.
Gabriell, Tennessee
My name is Gabriell and I live in Tennessee. I am a full time college student who is now uninsured because my mom is on disability and thus medicare, and my dad basically disowned me so I am no longer covered on his military insurance. I do not qualify for the tax credit through the ACA because my mom and my income does not meet the minimum requirement. Because TN did not expand, I can no longer receive my asthma treatment or other medicines.
Luci, Florida
I am a single-Mom, going to school full-time, with severe degenerative osteo-arthritis non-specific, Costocondritis (chronic chest pain and tightening of chest muscles), Labrynthitis, with chronic pain and insomnia due to pain. I was the wife of Navy sailor when my body started degenerating on me. The Navy caught the Costocondritis, but doctors never did other tests (even though I constantly had issues with my joints) to catch the arthritis in its early stages. I’ve not had insurance since my divorce. I tried to go to work after my divorce but found my skills and experience lacking for most office jobs. My body could not handle manual work. So I went back to school. A couple of years ago, I was on my way to worship service, it was particularly cold and I couldn’t find a place close up. I collapsed before even making it half way across the parking lot, unable to breathe. Luckily, several people noticed and ran to help me. They got me inside and warmed me back up and I could breathe again. After that I saved up money and went to see a doctor on my own dime. I couldn’t afford everything I needed, but she at least got me a handicapped parking plaque. That has helped immensely. I’ve lived in pain without any true relief for so long that it has begun taking a toll on my heart. March 2013, I was home alone when my heart went crazy. I called 911 and was rushed to the hospital. My BP was through the roof. I don’t remember the exact number, but the bottom number was over 200. They wanted to put me on a heart monitor to see how much damage has been done. Without insurance, I couldn’t even go see the heart doctor for a follow up – much less pay for a whole month of monitoring.
I am used to pain, I would say my daily average is 4-5 on the 10 point scale. I’ve had so much pain I couldn’t breathe. I was in constant danger of miscarrying my son when I was pregnant and was rushed to the hospital more than once in the first trimester alone for pain so bad I couldn’t see straight. I know pain.
Later in the spring of 2013, I wasn’t even using my knee at the time, and it snapped, like a twig. My doctors pushed to get me on full Medicaid (was on partial Medicaid with a very high co-pay $500 a month, I only get $500 a month in child support… so if I were to pay out $500 for my services, then Medicaid would pay the rest…. So basically have no money at all for food, rent, or basic necessities – then Medicaid will pay for my medical bills. When that’s what it takes to get medical, you do without because you need food, rent, and so forth – especially when caring for a teenager). I got surgery needed for my knee, MRIs, CT scans, blood drawn the works. That’s how we found out about the severe degenerative osteo-arthritis non-specific. A month after my surgery, Medicaid dropped me because I was supposedly not cooperating with child-support enforcement. I called child-support enforcement and they had no clue what Medicaid was talking about. Medicaid would not listen. I still do not have Medicaid. I am not healing properly, but I can’t go back to the doctor to find out why because I can’t afford it. I don’t even have partial Medicaid anymore because of this BS about cooperation with child-support enforcement.
So I have undetermined heart issues, severe arthritis which went undiagnosed for years, Costocondritis, etc… And I can’t even get basic doctor appointments because I can’t afford it. I have medical bills Medicaid was supposed to pay that have gone to collections because Medicaid in my state just went – “lol nah, you pay it.” With what exactly am I supposed to pay them? They aren’t even that much, around $500 total. I am hoping to go to Law School next year and I’ve actually removed from my search all states without expanded Medicaid because I can’t keep living like this.
Chelsy, Florida
My name is Chelsy and I am 22 years old. In 2010 I was diagnosed with ulcerative colitis, but I have also been dealing with bipolar disorder, depression, and severe anxiety since about ten years old. When I was diagnosed with the ulcerative colitis I was fully insured by Medicaid in my state and was able to get the help I needed. It turned out that with the right medication the colitis was actually pretty well controlled and after a year and a half of suffering I went into full remission. That was with the help of a medication called Remicade, an IV infusion drug that I received every 8 weeks. When I turned 20 I was informed that my Medicaid would be taken away from me on my 21st birthday. I was devastated, there was no way I could afford my life changing medications on my own (did I mention remicade is over $10,000 per treatment?) and there even less a chance I could afford insurance on my own. I am a full time student, I used to work as well but had to quit when my illness got too severe. I live at home with my mother and her one job barely covers the bills. On my 21st birthday I was basically thrown out into the world with no healthcare and was told good luck. It has now been a year since I have had proper medical care (aside from the very expensive ER visit here and there) and it has been one of most trying years of my life. I have good days and bad days but as the year has progressed the good days are fewer and fewer. My flare ups have become more frequent and the pain more intense. Some days I have to force myself out of bed, other days I can’t even do that. I do not qualify for disability because according to the government I am not sick enough, as if there is some magical level of the deserving and undeserving. I struggle to continue school with my deteriorating health and fear one day I may have to quit altogether. If Florida had expanded Medicaid my life would be totally different because my disease is treatable. If I had Medicaid I could go to school without a worry and move on to live a productive life contributing to society. As it stands now I just don’t see that happening.
Colleen, Florida
Brief uninsured story: I am a 33 year old disabled woman from Florida, another non-expansion state. I suffer from multiple illnesses, including Ehlers-Danlos Syndrome (a group of inherited disorders that affect your connective tissues — primarily your digestive organs, joints and blood vessel walls.) bipolar disorder, and PTSD. I have no access to care beyond community mental health. my SSI application stalled for years as EDS is an unlisted/unrecognized condition. My graduate degree is basically in the trash because I am too sick to work, my retirement account gone. My family and friends are keeping me in housing. I was just released from the psych hospital again today following another meltdown, unable to cope with my illness untreated. The psychiatrist’s discharge plan: “See cardiology ASAP. Imperative. See orthopedics ASAP. Imperative. Obtain Medicaid.” My untreated physical illness has become a mental health crisis that’s given me three hospitalizations in seven months, none of which I can afford to pay for.It would be so convenient and easy to believe that these are just a few people who slipped through the cracks. But the numbers nationwide are in the hundreds of thousands. Those are some huge cracks. Like Stacy and the rest of the 57,000 Utahns who remain in the coverag
e gap, all they can do is wait, and hope that wisdom and compassion prevail befe it's too late for them.
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