Story Bank: Mainers Standing Together for Medicaid

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Lynnea, Lewiston

What kinds of struggles have you seen in your community among your neighbors?

A: "I've seen young single moms just trying to wrangle their kids. I've seen grandparents who never see their grandkids but still have to go and do things, that need help getting up and down stairs. I've seen families where mom and dad are working their tails off, but they're still struggling."

How long have you been without health insurance?

A: "I've been without health insurance for a little over a year now, inching towards a year-and-a-half. I had a good job that gave me a stipend to help with health insurance but my pay was just enough to make me ineligible for MaineCare. My stipend wasn't enough to cover insurance. It would cover about half of it. So, I was in that place where I could get it, but I couldn't afford it and I am still kind of stuck their right now."

Do you have any medical conditions that require treatment?

A: "I have a tooth that started going bad last fall and when it first started it was excruciating. Just eating was not happening. It hurt too much to even think about eating. Anything hot or cold was just incredibly painful, nonetheless chewing. The nerves are now dead, but it's still tender so if I chew on that side of my mouth, it hurts. What gets to me is knowing that I could do something about it, but I can't afford to and someone, somewhere has decided that I don't deserve health insurance. I'm somehow unworthy to get my health issue dealt with. That's what kills me. It's the thought that I'm not good enough."

How has lack of health insurance impacted you?

A: "So, I try to be very careful about what I eat, how much I eat, when I eat just to make sure that I'm not pushing myself towards diabetes. I'm honestly a little afraid of what my first conversation with the doctor is going to be."

Why is Medicaid important to you?

A: "I don't feel that your health should ever be a question. You should not have to ask yourself, 'do I eat for the next two days or do I go to a doctor?' No one should ever have to decide between paying their copay or feeding their children."

Chris, Winslow

Chris grew up in Harmon, a little town northeast of Skowhegan. His father owns a construction company and his mother is a longtime seamstress. Chris worked for his dad installing septic systems and doing road construction work for 12 years until about a year ago when he moved to Winslow to be with his partner and her three children. He now works part-time as a spare driver for Kennebec Valley Community Action Program. Chris also takes care of the kids – ages 14, 12 and 3 – after school and while his partner is working.

Six years ago, Chris noticed a mole on his chest. He did not have health insurance at the time. He put off going to the doctor until one day it burst. He knew this was not normal. He went to the doctor at a walk-in clinic in Pittsfield. They removed the mole right away. When the biopsy came back it was positive for cancer and Chris left with a diagnosis of melanoma. The clinic sent him immediately to Brewer to a doctor that specializes in treating cancers. Soon after, he was sent to a surgeon in Bangor. The computerized tomography (CAT) scan alone was $10,000. “I could’ve put a down payment on the machine,” says Chris. His surgery was another $10,000.

Luckily, Chris was able to qualify for MaineCare and get the care he needed to deal with the cancer, but it wasn’t a simple path. “They took two inches right under my neck," he said. "They glued it instead of stitches. I ended up with a crook in my neck for a year and had issues with my shoulder. Still, I was the one in the family that took it the best. I said to myself, 'I am going to get through it or not. I looked both directions. It’s going to be really miserable and I’m not going to get through it, or it’ll be simple.'”

After a few years, Chris’s MaineCare eligibility was reviewed and due to the state of Maine not accepting Medicaid Expansion funds from the federal government, Chris found out he was no longer eligible and lost his MaineCare. Now, Chris worries about being able to address his health care needs and make sure he doesn’t face cancer again. “If it came back and I had to sustain testing, I couldn’t afford it,” he said. "It’s better to treat something early when its benign than when it’s overgrown and there’s little that can be done or it’s very expensive at that point. I am sure if I let the melanoma go longer, it would’ve spread through my body and my chances would’ve been very different.”

Diane, 57, Presque Isle

After completing her medical assistant program at a community college in Indiana, Diane moved to Presque Isle, Maine to be closer to her aging parents and her sister. Knowing that her parents may need help tending to their medical needs and maintaining their home in the future, Diane and her sister made a decision to remain close to their parents.

During her move from Indiana to Maine, she injured her foot. “When you sprain or injure your foot like that, it's going to swell so I didn't think anything of it,” said Diane.

As she settled into her new home, Diane began working with an employment recruitment agency to find a job in her field. In the meantime, she was helping out anywhere she could to keep busy.

Diane noticed a small sore on her left foot that she treated herself at first. Having had past injuries, and treating them with success, she felt comfortable tending to her own medical needs. Not having health insurance solidified her decision to forego medical treatment.

“I thought it was the flu,” said Diane. “About four days later I ended up in the hospital because I couldn't walk and I couldn't stand. I was so weak.”

Upon admittance, Diane was immediately rushed to the Intensive Care Unit and diagnosed with osteomyelitis, an infection of the bones that can spread to surrounding tissue if not treated properly. Diane had her toe amputated, but within two weeks of her initial surgery, her doctors discovered the infection had spread and required further treatment.

“The infection that I had was just sort of creating a bigger problem so they did another test and found that there was so much deterioration and so much poison that, to save my life, they would have to amputate my leg," said Diane. “With everything that the doctors had said,  I could have been dead by Friday because I was so full of poison and my body was fighting as hard as it could. I was to the point where I was closer to death than I realized.”

Diane was prescribed medication to help her heal appropriately during recovery. However, the medicine she was prescribed had adverse effects.

“I was breaking out in a rash all over my body and we couldn't figure it out,” said Diane. “I had an allergic reaction to a medicine. The doctor put me on a different medicine and due to circumstances, I swelled up so bad. I couldn't put on my shoe and I couldn't close my hands to do my exercises.”

Her original recovery time should have been only a few months. It has taken Diane from December 2016 to July 2017 to be well enough to be fitted for a prosthetic leg. “I have been fighting for MaineCare for that whole time,” said Diane.

Throughout her recovery, Diane was working a seasonal job answering emails for a company. “It was a likeable and a really fun job,” said Diane. “Since I didn't have to go outside, it was helpful for all of us because I didn't have to use the cars and have a chance of getting stuck in snow.”

Since her surgery, it has been difficult for Diane to secure employment. “I have not been able to find a job because of some of the stress of what's going on,” said Diane. “So to try to find another job…I can't find one right yet because the doctor will not release me [to work].”

She has applied for Social Security Disability Income, but has been denied. “I'm going to work as soon as I'm released when all these things are solved, but in the meantime, I still have no income,” said Diane.

In May 2017, while awaiting a response from MaineCare, Diane suffered a transient ischemic attack, also known as a mini stroke.

“It [a mini stroke] lets the doctors and you know that there could be another big problem down the road, so you've got to prepare for it,” said Diane. “That is sort of what we are doing now. We are not anticipating a full stroke, but you never know.”

The culmination of her medical needs were beginning to weigh on her spirit. “When you are having problem after problem and then of course on top of it, who wouldn't be depressed and down in the dumps most of the time when you have problem after problem,” said Diane. “You have the physical problems, you have the mental problems now, and you have emotional problems because you're just frustrated and no one is really listening to you.”

Her spirits began to life when, in July 2017, Diane was approved for MaineCare. Because she had begun her application process in December, MaineCare helped cover her hospital bills. “It [MaineCare] helped to relieve a lot of stress,” said Diane. “There was no way that I could ever pay this back.”

Reflecting on her medical journey, Diane is appreciative of her family, friends, and church community that helped her through these unpredictable circumstances. “The problems that I had were just problems that no one could foresee,” said Diane. “If it wasn't for the charity of others, I really don't think I would still be around. To know that I am still here, how many months later is really a blessing.”

Pamela, Sabattus

Do you currently have health insurance?

A: "I just got health insurance back. I had been without health insurance since February."

Do you have any medical conditions that require treatment?

A: "In February, I needed to go to the doctor's. The job that I'm involved in right now, you have to wait at least three to six months before you can even get health insurance, and that's while you're employed. So, that makes it really tough that you have to wait that long of get health insurance while you're employed. It should be an automatic thing. But I do have medical issues that I needed to be covered and the insurance company that I had denied it so I couldn't get the testing. By then, I had decided that the company that I was working for, which was out of town, and I weren't a good fit so I left that job hoping to go right into another job. It didn't work out that way. So, it ended up that it took me time to get another job that I would agree to take and get health insurance. I still had to wait three months while being employed by this company to get health insurance when it should be an automatic thing. I've always worked and most of my jobs, when you got hired, you got health insurance. But this industry does not do that for you. So, you have to wait."

 How has lack of health insurance impacted you?

A: "I couldn't go to the doctor's. I couldn't go get things looked at that I needed to have looked at. My doctor wanted to schedule an MRI. I couldn't go."

Why is Medicaid important to you?

A: "Everybody needs to be healthy. If you're not healthy, then you don't take care of your children, you don't take care of your life, you can't work, or your work creates a problem and you have no safety net to help you stay healthy so you can be a productive human being. Everybody deserves a chance to be healthy and productive and when you take health care out, we don't get to be healthy. Employers don't get their workers to work. What do you do? You know, what do you do?" 

F.M.H., 63, Oxford County

For the protection of our storyteller, we will only be sharing her initials.

F.M.H. left home at 16-years-old. She worked for 12 to 18 hours each day, completed her GED and some college, experienced homelessness, and purchased a home. "I broke my body trying to take care of the people that I was supposed to take care of," she said. "I've been trying to improve myself the whole way."

In the 1970s, F.M.H. was told that she had 25 years left to live. She was diagnosed with Hepatitis C, a blood infection that attacks the liver.

Her treatment would cost $1000 each day for a six-month period, not including the various testing needed to treat the infection. She was without health insurance, and could not afford to pay for the treatment she needed to live.

She is also facing health challenges including chronic obstructive pulmonary disease (COPD), osteoarthritis, bilateral neuropathy, chronic liver disease, chronic depression, and oral health issues.

Because of her medical challenges, F.M.H. had to take early retirement and is now relying on her Social Security benefits as her only form of income. She receives $418 a month which covers part of her rent and food.

In January 2017, her MaineCare application was accepted.

"I was fortunate enough to be so sick that I had to retire early, and I was able to get MaineCare because of it, which covered the cost [of the Hepatitis C treatment]," she said. "If I hadn't got that, we wouldn't be talking. I got lucky by being unlucky. I have medications right here on the table in front of me and without medication, I would die. It's that simple."

This summer, due to her bilateral neuropathy, she experienced blood vessel contraction which caused her leg to split open. After going to her doctor for some tests, she discovered her wound was staph-infected.

"Without MaineCare, I couldn't afford these medications, and without these medications, a staph infection becomes deadly to me," said F.M.H.

With MaineCare, F.M.H. has been able to get a shingles, pneumonia, and flu vaccination that she would not have been able to afford otherwise.

"These are all the things that I don't have the money to pay for and might compromise my immune system," she said. "It wouldn't take much to close my book."

She is thankful to be enrolled in MaineCare and has received help treating some of her medical challenges. Still, F.M.H. is having trouble accessing oral and mental health services, her top health care priorities.

MaineCare covers limited oral health services for adults over 21-years-old. F.M.H. has not been able to get basic dental care like cleanings and fillings. 

She has also had difficulty finding mental health providers that are knowledgeable in serving transgender communities.

"What they don't realize is just the pain of it," she said. "It's not just mentally, it's physically. I have a body that I truly don't believe is meant to be mine. I hate to say this but I've contemplated the easy out route. Last week I thought about it. There are no resources for this. There are days when I wonder, do I really want to continue? Do I want to go on? How long do I have to struggle?"

F.M.H. believes that all Mainers deserve health care, and by receiving the services they need, we will all begin to function as a community.

"It's all about how to save a dollar," she said. "There are lots of ways to save a dollar. If people that are sick are cared for, and they're not sick anymore, you're not spending money continuously to make them better. An ounce of prevention is better than a pound of cure"

Max, Portland

Tell us a little about your life after high school.

A: "At first, it was fantastic. I won a bunch of awards from my high school, from the Boys and Girls Club, from my neighborhood for doing a lot of volunteer work. College was going great—A's and B's—a bunch of awards there. Last fall, I had a severe episode of depression which lasted most of the semester actually, from November on. That led to me being flunked out of SMCC and since then it's been me rebuilding my life, going to therapy, trying to get health care, and really just picking up the pieces."

Do you currently have health insurance?

A: "I lost health insurance when I was 18. The state did not tell us. I was on MaineCare. I got no letter, no phone call, no knock on the door. That was it. Then when I flunked out of school and went to go get my psychological help for my depression, they were like, 'you're not insured.' So, we found out the hard way that I didn't have health coverage."

How does lack of health insurance impact you?

A: "Really, it's just my doctor is not being able to get medicine that I could use. And then that whole like, 'what if something happens?' I'm not covered."

Why is Medicaid important to you?

A: "Like I said, it's a ripple effect. If you have the one child who's injured, or who's chronically sick or what have you which happens, unfortunately, it then effects the siblings, it effects the parents at work, at school, in their lives. It can lead to disastrous effects which impacts everybody, even if you don't know that." 

Janice, 55, Swanville

Janice was reaching for the sewing scissors she frequently used while making U.S. military uniforms at Little River Apparel when she felt something pop.

"I thought, 'well it's probably just tendons and stuff moving over the bones', she said. "I just kept working."

It was not long before Janice began to experience painful spasms in her neck and back. She had ruptured multiple vertebrae. 

Janice was able to receive workers’ compensation from her employer, but she still struggled to receive the medical attention she needed.

Soon after her injury had occurred and she lost her job, the owners of Little River Apparel shut down the facility. 

Because Janice does not qualify for MaineCare and cannot afford medical coverage through the Marketplace, she needed to figure out a way to help pay for her medical needs, quickly.

Janice gained employment at L.L. Bean and Jackson Hewitt, a tax preparations agency, during their peak seasons. When her seasonal jobs ended, she was unemployed for three months before landing a job with a call center.

By November 2015, Janice was experiencing so much pain, she had to stop work completely.

"The pain was just so bad, and I was having such bad spasms," she said. "You sit there on the phone, so you can't stand and alleviate the pain. The headphone cord is too short to stand."

Workers’ compensation alone does not pay for all of Janice's medical needs. She must rely on past savings and her weekly workers’ compensation benefits which amount to $478.

"The basic expenses are so high these days," she said. "How anyone can live on less than what I am making is beyond me because I am struggling."

Janice is years away from qualifying for Medicare. She must continue to navigate in a way that does not completely deplete her of her finances.

"I am just thinking of what it's like for a normal, average person to go through this and to lose their entire savings to keep afloat," she said. "Some people lose their homes, some people lose their cars, and the state doesn't even stand by us."

Patty, Shapleigh

Tell us more about your family's health care situation.

A: "My husband was taking some small part-time jobs. He taught at the local community college and I worked, self-employed, from home part-time. He was slowly becoming more and more disabled. A few years before we lost our health coverage, we had applied for disability and been denied, and appealed, and denied several times and gave up. With disability, disabilities don't give up."

How did lack of health insurance impact you?

A: "In 2012, at that point, because we were low-income and had no children [under 18], we had no health insurance. We didn't qualify. Our state did not expand Medicaid when it had the opportunity so we were without health coverage. It was a very difficult time for us."

Why is Medicaid important to you?

A: "To me, people should not have to choose between having medical care and then having to go bankrupt, or not having medical care and risk dying. I know if my husband had not gotten the medical care that he did, I would be a widow and my children would have been without a father."