Posts tagged medicaid
From Parent, to Advocate, to Leader (by Jessica Fox)
Jessica Fox and her daughter Claire, age 4

Jessica Fox and her daughter Claire, age 4

I am a mom.

When my daughter was born with a heart condition requiring a high level of medical care, I became her advocate.

When I realized there were many kids like her, unable to access the resources they need to survive and thrive, I became a leader.

The truth is, I never thought I would be a health care expert meeting with legislators in our state Capitol, but now I am. Because I have to be.

Too often, our policies on health care are made by people who do not understand what it's like to care for a child who has had more doctor's appointments than play dates. That is why I started speaking up and fighting to change our state law.

I started speaking up because of my daughter, Claire, a very happy four-year-old child. She loves to tease her siblings and will pull out all the stops to make them laugh. She loves music and she loves to play dress up. She currently attends an inclusive pre-K program, where she signs her best friend’s name “poppy” by using sign language for “bubble".

In many ways, she’s just a kid living her best life; but unlike most kids, she has spent more than her fair share of time in hospitals, racking up millions of dollars of medical bills in the first two weeks of her life.

We were very fortunate to be covered by my employer’s commercial insurance plan to pay for her medical care. In addition, due to Claire’s extended hospitalization, we also qualified for our state’s Medicaid plan, called TennCare, as a secondary policy. This was necessary because as great as our insurance was, it did not cover everything Claire needed, like her therapies, medical equipment, and surgeries.

Then, one day, just prior to Claire’s 4th birthday, we lost her Medicaid because we no longer qualified. Just like that. I appealed not once, but twice and lost. How could a disabled child be denied access life-saving medical care in America?

I sat in the grocery store parking lot crying one day, and I knew I had to do something.

I have to confess that a year ago, I had no idea who my State Representative was. We all start somewhere. I began a letter writing campaign and asked everyone I knew to join me.

I connected with groups like Little Lobbyists, a family-led organization advocating for children with complex medical needs and disabilities, where I felt encouraged and a sense of community. I made calls to my State Senator. I reached out to several agencies. I attended health care forums. I took notes as candidates campaigned for the mid-term elections.  After tucking my kids in bed, I spent my late nights reading and learning about our state government. I learned about the Katie Beckett program, a Medicaid waiver program that allows medically complex children to live at home with their parents instead of an institution, by waiving the parent’s income. I learned that Tennessee was the only state in the country without this program.

I told my story in several newspaper and television interviews. This past October, my daughter’s face was the front-page center piece article of our local newspaper, talking about why we need the Katie Beckett program.  I joined four other families with children like mine, and we took off to our state Capitol. That day, my husband and I took our daughters to meet various lawmakers who agreed to sponsor a bill that we hope to become a Katie Beckett program in Tennessee.

I remember we sat in a legislator’s office, next to Claire as she rocked in his rocking chair. When you show up with your kid at the state Capitol, legislators are forced to see them with their own eyes. Claire is not a number or statistic; she’s a real child.

Jessica Fox with her family visiting Tennessee State Representative Sam Whitson

Jessica Fox with her family visiting Tennessee State Representative Sam Whitson

Our bill is now progressing in Tennessee’s House of Representatives. This bill, if passed, will ensure Claire can access the medical care she and so many other kids need and for us, that means we give them every fighting chance to reach her their highest potential.

This is why we need to engage our lawmakers. They work for us. They need to understand how policies affect our lives. We are the experts on our children. We are the experts on policies that affect our children.

We are constituents. We are real people, who care about our loved ones. We are spouses and siblings and friends and neighbors, and yes, we are parents. It is time for us to speak up and lead.

Some of the Tennessee families fighting for a Katie Beckett Medicaid waiver in their state.

Some of the Tennessee families fighting for a Katie Beckett Medicaid waiver in their state.

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Keep Health Care in Mind When You Vote (by Jodi Aleshire)

It's the eleven year anniversary of my diabetes diagnosis and the government still wants me dead!

My brand of insulin costs $340 if I were to be uninsured. That's $0.34 a unit. A unit is ONE HUNDREDTH of a mL. If something seems wrong about that to you, that's because it is. (1)

Technological advances has increased to the point where human and analog insulin can be produced for under SEVEN DOLLARS a vial. For anyone following along at home, that's a nearly 5,000% increase in cost. (2)

It's estimated by the World Health Organization that the average diabetic will use 40 units of insulin a day. At the current price point, without decent health insurance, living a single day costs about $14. A week $95. A month $432. A year comes in at just under $5,000. (1)

There are no "generic" insulin brands on the market, no older options like "pork" or "beef," so to say, animal-based insulins, available in the United States any longer. This is due to "evergreening," a technique used by the big three insulin producers (Sanofi, Eli Lilly and Novo Nordisk) slightly tweaking the formulas for their insulin before their patents can expire, thus extending the patent. (3, 4)

That's why a drug that has been around since the 1920s is still so expensive. While, yes, progress has obviously been made, the Big 3 have slowed the process of change, with Sanofi filing a lawsuit against two producers, Merck and Mylan, from introducing a generic form of Sanofi's primary insulin. (4)

Now, you may be saying "if it costs so much, just suck it up and get health insurance. It's not the government's fault that you don't -" yeah, I’m gonna need you to stop. Because this is where the issue of Big Pharma and the American government's lax health care collide.

This past year, TWENTY STATES filed a lawsuit against the Affordable Care Act (which in March of 2010 made it so that insurance companies couldn't penalize those of us with preexisting conditions by refusing us health care) that moved to revoke the protections in place for us. Texas vs Azar went so far as to say that the protection placed on pre-existing conditions was "unconstitutional." I guess they missed the "life" part of that whole "life, liberty, and the pursuit of happiness" bit. (5)

Not only have legislators tried to take away something that keeps people with pre-existing conditions from, often, a painful, PREVENTABLE death, we've had to watch them mock us in the media. Mo Brooks (R-AL) decided that we simply weren't "living the right way." Or Mick Mulvaney (Officer of Budget and Management for the Trump Administration) declaring "that doesn’t mean that we want to take care of the person, or should be required to take care of the person, who sits home, drinks Coca-Cola, no offense, drinks sugary drinks, and doesn’t exercise, and eats poorly and gets diabetes." Which not only shows a fundamental lack of knowledge on diabetes, but a lack of empathy as well. (6, 7)

While the ACA has yet to be repealed, the window to apply for insurance through the ACA has been shortened from 90 days to 45 days and the awareness budget has been slashed by 90%. Now, there's also the option for Medicaid, which at base-country wide level, will offer coverage if you're under the 138% poverty mark- with individual states having the option to expand coverage to under that point.

I make under $9,000 a year and I only fall at the 73% poverty point, to help put things into perspective. And a basic plan at that rate, without Medicaid, runs on the national average (for me, a single household 21 year old nonsmoker) between $230 and $370 dollars. That's more than my rent if you were curious. (8)

All this to say, health insurance, even with aid, still isn't cheap. And when the cost of insulin is so high, there are still out of pocket charges you have to pay monthly. I know diabetics who have gone without insulin because they just can't afford it; they can't afford insulin; they're trying to save their parents' money. (9)

Diabetes affects over 30 million Americans, with 1.2 million having Type 1 specifically. There are, on average, 1.5 million new cases diagnosed each year. In 2017, the nationwide total cost of diagnosed diabetes came in at 327 BILLION dollars. It comes as no surprise that diabetes is the 7th leading cause of death in America. (10)

I'm 21 years old, and today, I've been diabetic for eleven years. The average life expectancy for a Type 1 diabetic is 15 years shorter than that of the average person. For a woman in the United States, the average is 81. (11)

That means for me, that average is 66. According to statistics, I've got 45 years left. And I'll be damned if the government takes a single year of it.

So do me a favor for my anniversary, keep health care in mind when you vote.

The author of this post, Jodi Aleshire

The author of this post, Jodi Aleshire


My Son is in Hospice and his Healthcare Matters (by Tonya Prifogle)

My 7-year-old son Colton is in hospice.

Our entire family has been gathered around his bedside for weeks. His health, which had been slowly declining for over a year, rapidly deteriorated the day after Christmas. I’m grateful that he made it to Christmas, my smiling boy’s favorite time of year, to give us the gift of one last holiday together as a family.

The time will soon come when his broken body will be at rest, and my constant fight to ensure his access to health care will become a distant memory.

But not yet. Even in these final moments, when I should be able to focus the whole of my broken heart on saying goodbye, our fight is not over. Once again, our health care system has failed us. Once again, I am consumed by the fire of outrage at the suffering our children are needlessly forced to endure.

Obtaining hospice care for a medically complex child like my son is no easy task. The flat rate allocated for home hospice by Medicaid is not enough for a child like Colton; who needs a trach, feeding tube, supplemental oxygen, ventilator, medical supplies, medications, and more (we don’t call him our “million dollar kid” for nothing). Negotiating difficult contracts with agencies to set up care was complicated and stressful, to say the least.

As Colton became more ill, he needed more pain medication to remain comfortable. The prescription was written, but when we tried to fill it the medication was denied. Over the next few days, the script was denied four times. No matter what our physicians and pharmacists tried, it would not go through. As we ran out of medication, my greatest fear as a mother was coming true - my child would die a painful death and there was nothing I could do to help him. The health care system in our country is so broken that it prevented my child from accessing the medicine he needed to ease his suffering in his final moments.

I refused to accept this. I turned to the Little Lobbyists community I have been advocating alongside and my fellow mommas went into action. Through Twitter and Facebook, we shared Colton’s story. Generous friends and strangers donated funds and clicks alike. We cried out to the world for help and our voices were amplified by collective compassion and matching outrage. No family should have to endure this. Not here, not now, not ever

Fortunately we were heard by the people who needed to hear us. We finally got the attention of the pharmacy responsible. They explained they had made a mistake due to confusion over a new law in our state and were correcting the situation. After more than a week of worry, pain, and distraction, Colton finally got the medication he needed.

I’m filled with relief and gratitude that my beautiful little boy will not have to endure unnecessary suffering at the end of his life. But I cannot stop thinking about all the other mothers who are facing the death of their child. We should not have to fear the loss of health care coverage while we are trying to say goodbye. This is excruciating enough -- without fighting for hospice, without needing a “GoFundMe,” without exposing ourselves in our most vulnerable moment to the public scrutiny of social media in the hope that sharing our story will facilitate access to desperately needed care. This is wrong.

In his all-too-brief 7 years, Colton has taught me so many things about strength, and love, and the gift of life. To all who hear his story, I pray you learn just one thing from him – that the right to health care extends throughout a person’s life. My child deserves to live with dignity and as free from suffering as possible from the time he was a newborn in the NICU all the way to this moment in hospice, as he lies beside me struggling to hang on for just one more day.

Image description: Tonya (the author) and her son Colton embracing nose to nose.

Image description: Tonya (the author) and her son Colton embracing nose to nose.



Speaker of the House (by Stacy Staggs)

On January 3, 2019, the 116th Congress was sworn in, with Democratic party leadership.  At 4am I had yet to close my eyes, even though I had a full day ahead of me. I couldn’t sleep because January 3rd was the day we had worked for two years to reach.  The day the Nancy Pelosi regained reclaimed the gave and became Speaker of the House. This was the day that ended the Republican majority in all three branches of Federal Government.  We made it. Checks and balances have been brought back to the US Government.

Americans with pre-existing conditions, families with medically complex children and adults, people who are chronically ill and in need of sufficient healthcare, all relaxed just a bit, knowing that the Affordable Care Act (ACA) will not be repealed by legislation for now.  I was one of them. My daughter Emma, a former 28 week micro-preemie twin along with her sister Sara, relies on the protections against pre-existing condition exclusions and the lifetime coverage limits the ACA put a stop to…

When Speaker Pelosi reclaimed her gavel I breathed a little easier knowing that the Republican party agenda to repeal the ACA  without a replacement cannot pass while the Democratic party leads one of the chambers of Congress. We saw that the GOP could not repeal the ACA even  when Republicans held the majority in both chambers, but the devastating threat constantly loomed. With Democrats in the majority of the House, the threat has been somewhat neutralized for now.  Instead of being on the defensive, we can resume and expand our plans to improve the framework and execution of the ACA instead of fighting off its demise.

I have never, in my 40+ years of life, followed politics so closely as I have over the past two years.  I have never been so personally impacted or attacked by members of my own government and my fellow citizens who support an agenda that includes removing healthcare and Medicaid supports for millions of families, including my own.  That is why I joined forces with the Little Lobbyists. I could not sit and remain silent as Emma’s right to access healthcare was attacked, belittled and dismissed as unimportant. My daughter is not expendable. None of our children should be thought of as a budget line item.

I was astounded when Speaker Pelosi shared credit for the Democrat’s victory with our Little Lobbyists,” in her first speech as Speaker to House Members and the American public. When she credited part of the progress we have made during these scary and tumultuous times to the Little Lobbyists it hit a lot of us like a lightning bolt!  It served as validation that the innumerable hours, late nights at our kitchen tables, butterflies as we approach the microphone to speak, or write to share stories about our families have, in fact, made a difference. In those early morning hours, between enteral tube feeds, checking ventilator settings, covering for another missed nursing shift, emergency room visits and lengthy inpatient stays, we realized that the time we have given in service of the Little Lobbyists goals have been an important part of the fight to stem the erosion of healthcare in our country.

We now have allies leading the US House of Representatives, and no greater champion than Speaker Pelosi. January 3rd was the day the landscape has changed. It was the day we have had circled on our calendars since before the midterm elections.  The day everything changed.

Stacy’s daughter Emma is the reason she cannot sit and stay silent.

Stacy’s daughter Emma is the reason she cannot sit and stay silent.

Why I’m Speaking Up (by Stacy Staggs)
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I wish y’all could have seen my face when I was handed a megaphone, of all things. Actually, it may be better my reaction was mainly internal, because I can tell you I did not feel nearly as confident as my picture portrays.

After more than a year of calling and emailing both of my US Senators, with hardly any response, I felt pretty ineffective. I was sure people would want to know the human cost of their proposed Healthcare changes. It had to be a mistake that both Senators had repeatedly voted to repeal the Affordable Care Act. They must not know what it means for my girls, and millions of children like them, who would be in mortal danger from such an unstudied and hasty change. To be fair, I had never approached them with a constituent issue in the past. Honestly, I didn’t even know their names until early 2017. Still, I had no way to anticipate the apathy I was greeted with by Senators Burr and Tillis.

I felt bold when I accepted the request from Little Lobbyists co-founder Elena Hung to speak (gasp!) in front of people (gasp!) at a political rally (gasp!), but in the days leading up to the #StopKavanaugh rally in Atlanta, my courage evaporated. I was left with the feeling that we all experience when asked to speak in public – all kinds of scary scenarios ran in a loop in my head. What if I fall over? Has anyone ever barfed at one of these things? Fainting seemed like a real possibility.

In the car, I poured over my carefully written remarks and practiced the purposefully placed pauses to my family, who listened in hopeful support. Together, we navigated through downtown Atlanta in our matching Little Lobbyists t-shirts and marched to the rally site. As I watched the three speakers ahead of me, I already felt the support of the crowd. This was a safe space filled with like-minded, active citizens who were angry about what we’re seeing come from our legislators. The unrest was pointed away from me, aiming straight for Washington DC.

Megaphone aside, when I spoke my first words, “My name is Stacy. I also answer to ‘Mom’, ‘Mommy’ and <ASL sign for ‘Mom’>…” I knew the crowd was already on my side and full of encouragement. I continued to tell the story of my beautiful twin toddlers, former micro-preemies who have fought every minute of their five years on this earth to stay with us. My voice broke as I shared snip-its from the early days in the NICU, when my willpower and determined stare were not enough to bring up oxygen saturation. The helpless feeling we have when the monitors are blaring and nurses move swiftly to intervene. I did my best to convey the impossible fragility of a 2lb newborn that has more wires than skin. When I waivered, I felt hands on my shoulder. I heard calls of encouragement from the crowd. I looked into the sea of faces and I saw genuine concern. Not just for our plight, but for the ongoing threat to their lives from a political party bent on undoing the accomplishments of the prior administration.  

I ended my speech by asking for help. Beyond outrage, we need action. We need concerted efforts and relentless outreach to our legislators.  Every day and twice on Sunday, we need calls, office visits, tweets and signs of protest to keep these critical issues top-of-mind. In April, I promised myself I would do at least one thing each day toward the goals of voter registration and story sharing. I see my daughters faces’ in the daily pictures of “100 Little Lobbyists Who Need You to Be a Health Care Voter” series we are sharing on social media.  

I am a newly minted parent activist and I know there are more of us out there. I know you’re angry and worried about what’s happening. You want to get involved, but you’re constantly exhausted and a little unsure about how to take the next step. Recent weeks have been especially difficult for us. We have witnessed conduct that would have been unthinkable until it all unfolded on our televisions. It would make perfect sense to recoil in despair.  

But consider this: What if we continue to speak up? What if our actions become stronger than our fears? What can we accomplish if we keep going? Just like we have done with our children and their medical teams, we can continue to advocate for them to reach their highest potential. I can help you. You can help me. We can do this together! Who’s with me?