Dear Senator Sinema,

16-year-old Taryn and her mom and dad embrace.

My daughter, Taryn, is 16. She loves to go camping, she loves her family, and she gives great hugs. She was also born with very complex medical needs, as well as cognitive and physical disabilities. You may remember meeting Taryn and me last March when we had the opportunity to speak during a constituent call over Zoom. In that conversation, I explained how I navigated each day with gratitude for the blessing of my daughter, and with worry about managing all the care she needs to ensure she has a fulfilling life. I shared that my husband and I worked tirelessly together to create a safe and happy home, and provided full-time care for Taryn. While we were able to get some in-home services through Arizona’s Home and Community-Based Services programs (HCBS), there is a shortage of home-care providers. Many families will tell you the same. 

Taryn and her father

A lot has changed for my family since we spoke. My fears have been drastically compounded by the unexpected passing of my husband, Taryn’s father, in late August. I’m suddenly faced with being a single parent. We’ve lost our family’s main financial provider and his job benefits, and now I have to figure out what life will look like for Taryn and myself going forward. Without my partner, I know I will need to rely on Home and Community-Based Services more than ever, yet I also know the care workforce is in a state of crisis, made worse by the COVID-19 pandemic. Without full funding for the Better Care Better Jobs Act in the Build Back Better reconciliation bill, Taryn and I, along with thousands of families like ours, will be left behind to try to endure without access to critical life-saving care. 

When we met with you last March, you assured us that you knew good policy for HCBS was important. You said that we could count on you, and I believed you. But now, without any explanation, you are withholding support for the very policies my family needs. I struggle to understand what part of this policy you have an issue with, because when I look at the financial analysis, it makes good fiscal sense over the next 10 years. The Better Care Better Jobs Act and the Build Back Better agenda will create jobs and allow those with disabilities and the elderly to get the care they need in their own homes and communities (which costs significantly less than institutional care). President Biden’s caregiving infrastructure plan will also allow caregivers to return to work, and it will contribute to the next generation of workforce development.  

Dawn and Taryn in a zoom meeting with Senator Sinema, members of Little Lobbyists, and her staff.

I know there is no such thing as a perfect policy, but your responsibility is to create and pass policies that improve lives in Arizona. As do many Arizonans, I believe the Build Back Better plan does just that. To remind you, roughly 65% of Arizona voters support the 3.5 trillion Build Back Better plan, with over 80% of your constituents supporting investment in Long Term Care. Continuing to stall threatens the lives of Arizonans with disabilities and Arizona’s elderly; that’s cruel and unacceptable. I urge you to consider who you are harming by not supporting this plan and remember that you represent Arizona voters first.  

As I have said before, I am available to talk with you anytime about the effects of policy on my family’s day-to-day life. Finally, I leave you with the words my daughter carefully programmed into her communication device last March to share with you. Taryn told you, “Your work is important.” Please remember that, and vote for the support our families need.

Your constituent,

Dawn Bailey
Registered Voter,
Chandler, AZ

Currently, Texas Governor Greg Abbott and Attorney General Ken Paxton are fighting to overturn the ACA. Governor Abbott, a pro-life politician, has said, “Texas has become the national leader in defending life. As governor, I will fight for every child to have a chance at life." But as I sit with my son Raphael, who has complex medical needs, I wonder—how is Texas defending life when it attempts to pull the ACA and Medicaid protections away from my son and many others like him?

I remember my pregnancy with Raphael: At five months pregnant, my husband and I are staring at a whiteboard. A world-class doctor has just finished writing our baby’s health issues on the board. He tells us it’s time to make a tough choice, and that if I were his daughter, he wouldn’t let my baby be born. We disagree—this baby is loved more than anything. We had tried for years to get pregnant, and had dreamed of the love we would show our baby. I dreamed of baby snuggles and laughs, and watching our child grow.

Fast forward eight months. My son, Raphael, has survived three months in the NICU, two surgeries, and countless medical procedures. We adjusted to life in the NICU, and I learned how to take care of my son’s medical needs. Every month on his “monthday” we would throw little NICU parties, complete with party hats and banners. Each night, we’d read him books and cuddle him to sleep. I learned infant massage and used oil to massage his tiny body.

We’d been home for a week when I woke up to see him lying limp and cold. In the scariest moments of my life, I performed CPR. Now I was at a different children’s hospital, in a trauma room, watching swarms of medical professionals surround my Raphael’s tiny, lifeless body as they worked to bring him back. The doctor told the team to work faster, that “this baby isn’t responding.” My heart nearly stopped—all I wanted was my son, alive.

For weeks after that horrible day, we sat by our son’s bedside, watching him slowly improve and stabilize. At this point, our medical bills (despite my excellent private health care plan) were skyrocketing—we received our first bill, for thousands of dollars, and panicked—how would we pay this on top of the hundreds of dollars we had been paying for weeks to park at the hospital?  When you are inpatient, everything is more expensive: food, gas to get to the hospital each day, and all of the specialists. Because my pregnancy had been so complicated, we had already spent all of our flexible spending account funds.

At some point in those hazy hospital days, a social worker helped us walk through the paperwork so our son would qualify for a Medicaid waiver—state-federal secondary insurance coverage expanded in our state as a result of the ACA to protect more little Texans with complex medical needs. Without the ACA and Medicaid, my son’s life and our livelihood would be at risk. Raphael needs monthly shipments of medical supplies and multiple therapy visits per week, which are covered by Medicaid. He gets sick easily, and when he does, he tends to get REALLY sick. Those additional health costs are covered. Medicaid provides home nursing that keeps Raphael healthy and allows my husband and I to work at jobs that matter to us and provide for our family.  

Raphael is now three. He loves playing soccer, going to swim class, and convincing his dad and me to take him to Chuck E. Cheese. He is supremely inquisitive (he’s teaching himself Spanish!) and incredibly loving; he adores his little sister and loves to shop with his shopping cart. Without Medicaid, Raphael would not be the thriving toddler he is today.

Both the ACA and Medicaid protect Raphael’s right to health care. Due to his complex medical needs, Raphael would not qualify for health insurance without the ACA’s guaranteed coverage of pre-existing conditions. Without the ACA and Medicaid, Raphael would have maxed out his lifetime health care cap long before his third birthday.

So, I sit with Raphael and wonder – how will he, and so many children like him, continue to survive and thrive if Governor Abbott and Attorney General Paxton succeed in taking away his health care rights? 

[image description: Mom Gillian with Raphael and his baby sister and dad seated together in front of a window]

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

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.

Jessica gave this talk on the Spark Stage at the Urig Summit in Nashville on March 30, 2019.

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

---

SOURCES:

1- https://www.goodrx.com/…/how-much-does-insulin-cost-compar…/

2- https://beyondtype1.org/how-much-does-it-cost-to-produce-i…/

3- https://www.nejm.org/doi/full/10.1056/NEJMms1411398

4- https://health.usnews.com/…/whats-behind-the-rising-costs-o…

5- https://www.forbes.com/…/possible-removal-of-pre-existing…/…

6- https://insulinnation.com/…/trumps-omb-director-wasnt-alon…/

7-https://www.chicagotribune.com/…/ct-health-care-pre-existin…

8- https://www.kff.org/interactive/subsidy-calculator/

9- https://www.cnn.com/…/30/health/rising-drug-costs/index.html

10- http://www.diabetes.org/diabetes-basics/statistics/

https://jdrf.org.uk/…/about-…/complications/life-expectancy/

11- https://www.statista.com/…/life-expectancy-in-north-america/

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.

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.

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?