6 Ways to Become a Legislative Advocate for Your Child

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In April 2016, Kentucky passed legislation that mandates private insuranceto pay for ‘therapeutic food, formulas and supplements’ for patients who are diagnosed with mitochondrial disease,” according to the Lexington Herald-Leader.

Twice a day, our 5-year-old daughter takes a compounded mixture of vitamins and supplements known as a “Mito cocktail.” Prescribed by her neurologist, this cocktail has shown many positive results, including increased muscle tone, stamina, stability and a lessened intention tremor. To date, the Mito cocktail is the only treatment currently available for mitochondrial diseases.

However, less than 10 percent of insurance carriers cover this needed medication. Although Kentucky law already mandated coverage, our private insurance carrier continued to deny coverage every month, even going so far as to insinuate that our daughter takes it for “cosmetic purposes and performance enhancement.”

Frustrated over the blatant wrongdoing by insurance companies, we decided it was time to clarify what was already mandated in existing Kentucky law.

Over the past few months, many have asked for advice so they can duplicate our success in other states. Before offering a few general tips to help get you started, I would be remiss not to mention that my husband and I have a legal and policy background. We have good friends who are Kentucky state legislators, and we are familiar with the political players of our state.

Since 2013, we have become vocal, well-known advocates for our daughter through our various social media accounts, our blog, Hope for Katherine Belle, as a contributing writer for the The Mighty and by appearing in The New York Times Motherlode blog. Yes, our careers and platform were instrumental in the speed with which we passed this bill, but don’t be discouraged if you don’t have a similar background.

Finally, I believe timing played an important role in rapid passage. During the same session, Senate Bill 146, known as “Noah’s Law,” called on insurance companies to cover amino acid-based formulas, just as we were calling on insurance companies to cover prescribed vitamins and supplements for mitochondrial disease patients. Early passage of Senate Bill 146 and subsequent publicity was fortuitous: Legislators became familiar with the ways insurance companies manipulate language to deny coverage for medically fragile patients. 

Kentucky State Senator Ralph Alvardo, Senate Bill 146 sponsor and physician, had another bill filed relating to insurance — Senate Bill 18 — to which the following floor amendment was later added:

Amend KRS 304.17A-258 to specify that mitochondrial disease is an inborn error of metabolism or genetics to be treated by products defined as “therapeutic food, formulas, and supplements” and that health benefit plans that provide prescription drug coverage shall include in that coverage therapeutic food, formulas, supplements, and low-protein modified food products for the treatment of mitochondrial disease; specify that this act shall take effect January 1, 2017.

Here are six ways you can become a legislative advocate for your child:

1. The best advocate is an individual personally affected by the proposed legislation.

Although a legal and policy background is helpful, it’s not required to be an effective advocate for your child or yourself. Advocacy work is not for the faint at heart — it’s a slow, frustrating, deeply personal process, and, arguably, the most crucial part of the legislative process. With hundreds of bills filed per session, legislators depend on advocates to educate them about a subject matter, and, as the expert, you are the most qualified person for the job.

2. Request a face-to-face meeting with your representatives or their staff during the slower months between legislative sessions.

They represent your interests and should be willing to listen to your concerns. Tell your representatives your story. You’re the expert; teach them everything they need to know. Schedules are packed during session, so it’s best to establish a relationship well before the start of session — this will give you ample time to tell your story and draft any proposed bill language. Likewise, meeting with legislators is an excellent way to learn more about the internal dynamics of your state legislature. Your legislator may not be able to help you directly, but they can help you navigate your way to the person who can be most helpful. And trust me, if you worked around legislators, you would quickly realize there’s no reason to be intimated by them. Yes, they are public figures, but they’re human just like the rest of us.

3. Do your homework and be specific.

While your personal story is the most powerful component, be prepared to share any relevant medical and scientific research as it relates to your cause. Likewise, you have a much better chance of success if you can present legislators with a complete package of drafted legislation, including where it falls in your state’s statutory scheme, as well as any statistical and economic information related the bill.

4. Create “buzz” for your cause.

Establishing a “presence” through social media is a powerful tool to communicate your cause. Don’t limit your audience to just your own district or legislator — increase your reach across the entire state.

For example, create a Facebook page dedicated to your legislative efforts, contact local media or involve support organizations to broaden your reach. Ultimately, the bigger the “buzz,” the harder you are to ignore.

Our daughter’s Facebook page and blog has a strong following. When we made the call for action, people listened and acted. Providing easy-to-follow links with letters to copy and paste and telephone numbers to dial, our grassroots strategy quickly gained momentum across the state. Voters were voicing their support for SB18, and legislators were listening to what their constituents were telling them.

Just as you presented a complete package to your legislator, it’s as important to present a complete package to your supporters.

5. Know your audience and be prepared for the unexpected.

Do your research on the political climate and the key players in your state legislature. Even though your cause should be a non-partisan issue, I can’t emphasize enough the role politics play in the legislative process. Although this may not always be the case, brace yourself for the ugliness that is involved in the making of laws.

Understand beforehand that it is within the realm of possibility that your cause will be used as a political football. Powerful opponents may come out against you. Establishing a public presence and creating a “buzz” for your legislation is key leverage should you need it. There is only so much a legislator can do from inside the legislature to get a bill passed. Your outside advocacy strategy may play an even more important role.

6. Never give up.

You’re unlikely to succeed the first time you try to pass any legislation. Keep trying. Involve more advocates, make more alliances with key legislators and never stop advocating for your child. Nothing on this planet is more powerful than a parent’s love for their child.

Follow this journey on Hope for Katherine Belle.

Lead photo source: Thinkstock Images

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The Part of Mitochondrial Disease That's Hard for Me to Talk About

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My husband and I on a couch
My husband and me.

So here’s the thing, since I first started showing symptoms of mitochondrial disease over six years ago, many things have changed. My life has involved way more doctors, and I’ve been learning to pace myself so that I live productively with my greatly decreased energy level. Those are both things most people know about me.

What most people do not know is, as vane as it sounds, the hardest part of my journey has been dealing with the changes to my body.

My body is under constant attack. I have had a brain tumor removed that has resulted in a bald spot on my head, around five abdominal surgeries that have each left their own unique marking on my stomach, a muscle biopsy that left a large scar on my leg, and have been on weight gain-causing medication since my illness began, resulting in 100 pounds more of me. At times, I feel like a life-sized operation game.

After all these changes and scars, I struggle to recognize my body as my own. I remember what I looked like before I was sick and wonder when I started looking so different. I struggle, especially in the summer, with the confidence to get dressed in a situation-appropriate manner and head out in public. I often resort to long sleeves and pants, even if I’ll be the only one all covered up. In my mind, it is easier to stick out because of outfit choices than because of my scarred body.

Just because I lack confidence in this body does not mean I am ashamed in any way of what I have been through. I am proud of all I have overcome. I have heard on several
occasions that I just wouldn’t make it through the challenges my illness has presented, yet here I am.

I just cannot yet show these things to the world. I am still learning not to harshly judge my own body.

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I'm an 'Angry Disabled Girl' Sometimes, and That's OK

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When my mitochondrial disease started progressing rapidly and I dove feet first into the category of “Disabled Girl” and “Wheelchair User,” I wanted to stay the same person and not be changed heavily by my disability. All me, just now in a wheelchair.

Part of what fueled my stubbornness was that it seemed like the people with disabilities I knew were always angry.

Angry at doctors.

Angry at able-bodied people.

Angry at their environment.

Angry at society.

I saw this anger and to me it looked so ugly. I wanted so much to be “above” that anger. While some people were hitting people with their canes and “running over” people with their wheelchairs, I would educate people about mitochondrial disease. While some were snapping at able-bodied people for saying the phrase “wheelchair bound,” I was going to tell everyone that without my wheelchair I would be bed bound. But as you can imagine, things are not that simple.

One Monday changed my perspective. It started with me calling an Uber to my apartment. When the driver got there, he kept yelling “The door is open!” I eventually transferred into the back and asked him nicely to put the frame of the chair into the back. He then went on, saying he didn’t have to help me and that most “wheelchair bound” people take paratransit. After a minute or two he did put my frame in the trunk. But of course he didn’t stop there, he had to mention that when he picked me up that he didn’t know I was in a wheelchair; he just thought I was short. Only last week I had two Uber drivers cancel on me on the same day. And if you think this problem is confined to Uber, I’ve had paratransit drivers say I have “too many problems” to ride and that I’m “too much of a liability.” Every time I leave my house I take a gamble.

I was supposed to take a wheelchair accessible taxi to my college on Tuesday so I could go to class in my electric wheelchair, but they sent a standard cab instead, with the excuse that they only have a limited number of accessible vehicles and I should have called two days ahead. Never mind the fact I tried to confirm the wheelchair taxi many times. It’s just my luck my doctor admitted me to the hospital a couple hours later anyway — at least I don’t have to worry about the ambulance being accessible.

So what does this have to do with my anger? This stuff happens to me every day. And while I don’t care about every little thing, these daily hassles build, especially when you have as little energy as I do. And with little energy comes little energy to respond to discrimination.

Take for instance this woman in my building — let’s call her Linda. She loves to come out of nowhere and “help” me. She does stuff like opening the door in a way that doesn’t let me get through, and offering constant inspirational advice. Linda can’t believe I can open the door to my apartment. Linda wants to congratulate me on pressing the button to close the elevator door. Linda would like me to to know it’s so nice that the doctors “let me out in the world.” No joke, she actually said that.

When I leave for physical therapy, Linda is there at the front door. When I go to class, Linda is there in the elevator. When I’m watching Trump win the New York primaries, Linda is there to tell me I’m so pretty for a girl in my condition.

The first couple times I nodded and said I have to go; the rest of the time, I tried to ignore her. But one special day when she came up to me, I couldn’t hold it in.

The same day I had to deal with someone parked in front of the sidewalk so I couldn’t leave my building.

The same day I had to deal with the Uber who quit once he saw I’m a wheelchair user.

The same day I had to wait two hours to pick up a single written prescription.

The same day I had to army crawl to get under the door in the wheelchair accessible stall at Hopkins, the #1 hospital in the US.

When I got home on that day, when she told me “good job” as I got my mail, I did not hesitate to tell her how rude she was being. I told her she was talking to me as if I was a toddler, and that wasn’t OK. She did not take kindly to this. It was as if I questioned her entire worldview, which in a way I had.

In that moment I realized I had become what I tried so hard to avoid. I was that Angry Disabled Girl.

But I wasn’t one by some malicious choice or attitude. Our lives as severely ill and disabled young adults are so much harder than those of our peers. Even the smallest things can turn into an ordeal, and those ordeals accumulate when you are running on poor sleep, fatigue, and lots of pain. Could I have been nicer to her specifically? Definitely, but that moment of anger was the wake up call.

I don’t think anger is necessarily a bad thing, as long as we take that anger and put it into social change to make our local communities better. You can make a difference in your town or your city. At the very least, you can share your anger and struggle to inspire others to fight for accessibility.

I truly believe most ableism and inaccessibility comes from ignorance. At least with anger our voices are heard and noticed. As long as I learn to direct my anger at problems and inaccessibility and not at people, I don’t think I mind being an Angry Disabled Girl, at least every once in a while.

 

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I Need to Apologize to My Friends for 'Surviving Selfishly'

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Friends, I need to apologize. I know you won’t want me to, and will ask me not to, but I have to. It’s the right thing to do. It feels right to me, and because of that I must.

Having a chronic/life-limiting disease such as mitochondrial disease is extremely overwhelming. It overtakes every single part of your life without you even realizing it. It slips in slyly like a boa constrictor and slowly squeezes the life out of you.  

With rapid-onset mitochondrial disease, you don’t have the time to put the oxygen mask on yourself first, so that you can reserve the strength and energy to help those around you cope. You are constantly grappling at one shoe while the other is falling off. You are trying to take steps forward while being thrust quickly backwards. It rapidly becomes a situation where most times instead of living you are merely trying to survive, and because of that selfishness becomes a mechanism of survival. It isn’t an excuse. It is the reality of an unfair situation, and it doesn’t feel right, because it isn’t.

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Kate’s friend visiting her in the hospital.

Good friends make it really easy to become “necessarily selfish.” They “understand” when you go into hibernation for weeks while you muster up the strength to keep living, even if it means you’ve missed their important life events. They don’t get upset when you have failed to ask how their days are, even when you have been speaking to them for an hour about your day. They don’t bat an eye when you forget their birthdays, even when you are speaking to them on their birthday. They don’t expect you to reciprocate childcare (nor would they ask you to when they really need it). Thus the poor habit of a one-sided relationship begins. It’s easy to happen even to the best of friends, even when you don’t mean for it to happen at all.

Why? Because tragedy is supposed to be temporary. The amount of one-sided caretaking and the reception of that level of care is supposed to be short term until you get back on your feet and are able to create a normal life for yourself. With a disease that is constantly progressing, that is nearly impossible. My typical is constantly changing, and therefore my loved ones are constantly trying to help me pick up the pieces and move on again. Mitochondrial disease doesn’t just effect me, it effects everyone around me. It is poisonous.  

So, I apologize, because I have to, whether the contagion that this disease has created is my fault or not. I am profoundly sorry for all of the days that ended before I asked you how you were doing. I am sorry for all the times social media had to remind me it was your birthday before I remembered. I’m sorry for all the days that passed before I responded to your text messages, although I appreciated them immediately.  

Please know I could not get through a single day of this disease without you. Your efforts never go unnoticed. Your strength to stick this out with me is nothing short of admirable. You are a large part of my ability to fight this disease. Thank you every day for everything you have ever done and ever will do.

Follow this journey on A Different Dream for Us.

The Mighty is asking its readers the following: Write a thank you letter to someone you realize you don’t thank enough. Check out our Submit a Story page for more about our submission guidelines. 

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5 Things I'd Like People to Know About Mitochondrial Disease

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In 2009 I was a newlywed riding in my husband’s semi-truck for a week. While I was the trip, I started having difficulty breathing and got a terrible cough. By the time he was able to get close enough to home for a family member to come get me, I had a high fever. The ER originally diagnosed it as a type of influenza that had been rapidly spreading around. After several months, we knew they were wrong.

I began to notice a wide range of debilitating symptoms. I was in terrible pain and over the next few years, I lost my ability to eat, walk and take care of myself. Two years ago, I finally started being able to function independently again. My life has been drastically changed by mitochondrial disease. I take every chance I can to raise awareness about my illness and how it affects those living with it.

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Here are five things I’d like people to know about mitochondrial disease:

1. It can be painful.

Mitochondrial disease affects everyone differently, but on a weekly basis, I experience headaches, nerve pain all over my body, and violent, painful muscle spasms. Because many medications are mito toxic (medications that can harm the mitochondria), those with mitochondrial disease are often forced to choose between relief of symptoms or side effects other people would not have.

2. Some medical professionals don’t think mitochondrial disease is real.

People with mitochondrial disease encounter skepticism way too often. I have personally looked into the eyes of many ER doctors who obviously think I’m trying to con them in some way. There is just not enough taught in med school about this disease, so not everyone thinks it is a valid diagnosis.

3. Mitochondrial disease has no known cure and very few available treatments.

There is a combination of supplements and prescriptions known as the “Mito cocktail.” It has to be tailored to each patient. It took me about 6 months to get the correct dosage of everything, but for some people living with mitochondrial disease, it can be a much shorter or longer period of time. The other part of treatment is keeping a close watch on your body and treating any other problems as soon as they arise.

4. Mitochondrial disease can appear at any time in your life.

While mitochondrial disease is often genetic, there are also people who have no genetic link to the disease.

5. Mitochondrial disease is often first misdiagnosed as something else.

Many primary care doctors are not familiar with the symptoms. I personally was misdiagnosed as having a totally different rare disease. Common symptoms include seizures, severe vomiting, heat/cold intolerance, poor muscle tone and a poor immune system. All of these can be pretty generic, so it often takes a child or adult years to get a diagnosis.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or mental illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. Check out our Submit a Story page for more about our submission guidelines.

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We Are a Special Needs, Military and Foster Family, but We Are Not Saints

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We had just gotten used to this whole active duty military life that involves Daddy’s frequent absences. We were adjusting to the idea of our third bundle of joy joining us. Then our lives were stopped in their tracks. Our oldest went from being pretty “typical” to losing the ability to hear, walk, talk, eat and in general move. It didn’t touch him cognitively. He was admitted; they couldn’t find an answer. We were sent home with our children and told we would watch our son continue to deteriorate and eventually die.

However, his doctors never gave up. We got the phone call October 30, 2014. “He has a mitochondrial disease. There is no cure.”

There was a long grieving process. Grieving the life we thought our child would have. Grieving how this would have an impact on us, our other children and our day-to-day lives. We were sad, angry, confused. 

It was rough for a while. We took it out on each other. We spent too much money trying to compensate. We struggled with adjusting to all the machines that now kept our son alive. We struggled with decisions about his end-of-life care. We thought our entire lives would be consumed with his care. We lost a lot of “friends” because of the way our lifestyle was forced to change. It brought us closer to some family members while distancing us from others. There were long discussions about if the military still had a place in our lives. In the end, it was decided that in spite of the absences, this was by far the best way to provide for our family.

Once we learned to acclimate ourselves to this world we realized we do not have to be devastated by this on a daily basis. We do not have to be martyrs to this disease. We knew it was unrealistic for me to work outside of the home, and that was OK. Before we were married, before mitochondrial disease, we had discussed eventually being foster parents. But would they want us with all of our medical drama and the military lifestyle?

In the summer of 2015 our son moved from hospice to palliative care. We were able to build a handicapped accessible house and moved in shortly after. Then we realized that now is the time to take care of these children who so need a loving, stable home. Now is the time to show our own children that regardless of all of these obstacles we have faced as a family, we can still serve others. There was no waiting for our lives to be “perfect.”

They don’t need perfect; they need love. And they need it now.

We were licensed as foster parents shortly after our move. We have welcomed a number of children from different circumstances through our doors. We want to show them, just like our biological children, that they have the ability to work through and overcome whatever is thrown at them. And what better way to show them how to overcome than to be a living example of that.

So often when people learn our story they say things like, “Wow, you guys are saints!” “I don’t know how you handle all of that!” Why on earth would you take on foster care with everything else in your lives?” 

“Aren’t your plates a little full?” 

And to all of them I say, nothing about the journey has been easy. But we don’t want easy. We want what is right. We know this is something we are called to do. As I am canceling the babysitter because we cannot afford a date night this month, as I am cleaning up my no longer immaculate house, wiping vomit off the walls at 2 am, picking lice off of another head or working with the schools on a child’s educational needs, I just remind myself how we would all want someone to love us enough to care for us if our parents were not able to. The moment they step through our door, no matter how they came to us, they are ours. And we will make whatever sacrifices are necessary to ensure their wellbeing and safety of all of our children.

The Mighty is asking the following: Describe your experience of not quite fitting under one specific diagnosis or a label your community identifies with. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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