Tips for Successful Legislative Advocacy

In April 2016, Kentucky became the first state in the country to pass legislation that mandates private insurance cover prescribed vitamins and supplements for mitochondrial disease patients.

Twice a day our five-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% 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 and angry 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, combined, 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. Further, 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. Senate Bill 146 sponsor and physician Senator Ralph Alvardo had another bill filed relating to insurance – Senate Bill 18 – to which the following floor amendment was later added:

HFA2/HM( R. Smart ) – 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.

Tips for Successful Legislative Advocacy: 

1. The best advocate is an individual personally affected by the proposed legislation. Although a legal and policy background is helpful, it is 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 are 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 a “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. For example, our daughter’s Facebook page and blog has a strong following. When we made the call for action, people listened and acted. Providing simple 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 cannot 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 are 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.
 

Five

If you’ve followed along since the beginning, you know the significance of these numbers.

IMG_7178

In past years, Katherine’s birthdays have been bittersweet, especially her third birthday.

Three:

Screen Shot 2016-06-28 at 2.38.17 PM.jpg

Unbeknownst to me when I ordered it, this birthday crown is clever and cost efficient. Instead of buying a new one every year, I can use the same one and just add a new number…you get the idea. Unfortunately, this little crown brought so many tears. Will she get to use every number? Please let her use all of these numbers.

Four:

Looking back, we realize that every prior birthday has greeted us with worries. By her first birthday, we knew something was wrong; our expectation that she would walk prior to turning one proved untrue and her motor development had stalled. Our nagging worry at one was a gut wrenching terror by two; she still was not walking. On her third birthday, we were living under a death sentence and the day was a bittersweet reminder that we probably had few such occasions left…Today, we have a new – an accurate – diagnosis, NUBPL, Mitochondrial Complex 1, and a new hope. This is a happy day and one of many more to come.

As I carefully placed those five pink and purple candles on top of her cake, a sense of relief washed over me. The haunting statistic that “30% of children with rare and genetic diseases will not live to see their fifth birthday” is now behind us. Yes, there are many struggles ahead, but it’s an indescribable moment to see those happy and beautiful sparkling eyes glowing in the light of five birthday candles.

IMG_7117.jpg

Soon after Katherine’s (mis) diagnosis in 2013, I wrote the following:

I do not know what tomorrow brings. None of us do. I believe in science, prayers, hard work, positive thought, and the healing power of love. Each day I share my photographs with friends and family and tell them a story that does not always require words, and that sometimes cannot be expressed with them. It is a story of faith, hope, love, and determination. As we continue ahead on our journey toward a diagnosis, I see a brave and thriving girl who is progressing, not regressing.  I see a happy and joyful child who meets every obstacle or challenge with the biggest smile and the most positive attitude. I see a future with many more photographs of accomplishments, milestones, and laughter. In all of my pictures, I see faith, hope and love. Above all, I see an abundance of love.

I have cried many tears in the last three years from witnessing the physical decline and death of numerous children with rare diseases we’ve met through social media. Instead of planning birthday party celebrations and school graduations, I have watched families plan funerals and suffer more than any human ever should.

As we continue ahead beyond this fifth birthday milestone, my own words lead me into the next chapter:

The past few years have been excruciatingly painful and tough, but I have learned a very valuable lesson: You never know what the next second of your life will bring.  My daughter guides me daily and reminds me that each moment is precious. Each day is a gift. She has taught me the significance of the quote, “We do not remember days, we remember moments.”  I have learned to enjoy and live in the present because it truly is the only moment that matters.

IMG_6918

Next Stop: Kindergarten

What a year for Katherine and our family. This has been a year full of change, including a new community, a new home, and a new school.

Last August I dropped her off for her first day of school and she never looked back. Not once.

IMG_4470_2

We made six trips to Bethesda, Maryland to the NIH for her clinical trial.

IMG_8597

IMG_8628

She had one or more therapies a day, which included early Monday mornings before school and Wednesday afternoons away from school. She even conquered her fear of water in Aqua Therapy (swim lessons this summer).

IMG_7959

She took her first independent steps and continues to grow stronger daily.

She made a special trip to the beach with our dear friends.

IMG_2582

She made new friends and ate a lot of cupcakes.

IMG_3725

IMG_4995.JPG

IMG_4032

IMG_4015

She did all the things I always hoped she would do, but feared would never happen. And she did things I never imagined my child would ever have to endure, but she did them all with a brave face, a good disposition, and a maturity beyond her years.

IMG_8642

IMG_8609

Katherine is only four, but she has been through a lot, from hospitalizations, to medical testing, to constant therapies, and coming to terms with her own disability and disease. She is a tough child. She’ll be the first to tell you that she’s never sick or tired. She isn’t afraid of life or her challenges. I watch her fall down at least 25 times a day…and get right back up 26 times.

IMG_1935

At the end of the day, though, I constantly remind myself that she’s just four (almost 5) and really needs time to sit back, relax, and enjoy doing nothing but being a kid.

IMG_3436

IMG_3486_2.jpg

As this school year comes to a close, I  want to take this opportunity to say thank you to Katherine’s teachers at Model Laboratory School. We are beyond blessed with teachers who understand her challenges, yet see her potential; understand that not all students learn the same way and encourage her to express true self; listen to our concerns and help in any way they can; and creatively find ways to help her learn and measure her understanding – all with love, patience, and a true enjoyment for their profession. Thank you, Ms. James, Mrs. Ballard, and Mrs. White. Thank you to all of her teachers and therapists. She loves you, emulates you, and says she wants to be you when she grows up.

Thank you for setting such a great example for her to follow. We will miss you very much. We admire you and thank you for giving her a strong foundation for her love of learning.

IMG_5346

Kentucky’s Children Need Your Help – Senate Bill 18

Twice a day Katherine takes a compounded mixture of vitamins and supplements known as a “Mito cocktail.” Prescribed by her neurologist from the Cleveland Clinic, this cocktail has shown many positive results, including increased muscle tone, stamina, stability, and a lessened intention tremor. We hope it also is warding off the progressive cerebellar damage her condition can cause.

Mitochondrial diseases disproportionately affect children and can be life-shortening and debilitating. Mito cocktails can increase the lifespans and quality of life of these children. They are the only treatment currently available for mitochondrial diseases.

However, less than 10% of insurance carriers cover this needed medication. Our own carrier has denied us every time for various reasons, including the ridiculous insinuation that Katherine is using it for “cosmetic purposes and performance enhancement.” They currently refuse to cover it because she needs it compounded – she cannot swallow pills.

The monthly cost for Katherine’s Mito cocktail is $250. For others it is much higher, as it will be for Katherine as she grows and needed dosages are increased.

Dave and I decided to take this matter to the Kentucky House of Representatives with the hope that clarification of existing law would make right what insurance companies abundantly abuse. The unfortunate reality is that insurance companies manipulate policy language to their own benefit – all at the expense of medically fragile children and their economically struggling families.

With the support of Senate Bill 18 sponsor and doctor, Senator Ralph Alvarado, Representative Rita Smart added an amendment that would clarify existing law:

HFA2/HM( R. Smart ) – 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.

The House approved it 96-1 and sent it back to the Senate for committee approval.

We have been informed that Senator Alvarado and others worked tirelessly for two years on SB 18. And from public record, we know that prior to Representative Smart’s Mito Amendment, SB 18 passed the Senate (30-8). They refused to pass it with the amendment, sending it back to the House to remove it.

What changed? At this time we do not know for certain. The Senate said they would NOT pass SB 18 with this amendment attached to it – all at the expense of children with Mitochondrial Disease.

I applaud the Kentucky House of Representatives for standing up and saying no to removing this important amendment. It is now in conference, which means that either the House can agree to remove it, leaving our sick children uncovered, or the Senate can agree to the amendment, giving them coverage for the only medicine that exists for their condition.

Please stand with us and let our unified voices be heard: We will NOT go away quietly or without a fair fight – Katherine Belle and everybody else’s Katherine Belles DESERVE better. Contact your representatives in the Kentucky House and Senate to ensure passage of SB 18 with this important Mito Amendment attached to it.

  1. CLICK HERE TO FIND YOUR SENATOR BY COUNTY
  2. CLICK HERE TO FIND YOUR REPRESENTATIVE BY COUNTY
  3. You will be directed to your representative where you will see a blue link with their email address. Once you click on “email,” a form will appear where you can type your information and a message. You can copy and paste the following:I support Kentucky’s children. Do you? If so, I respectfully request that you pass SB 18 with Representative Rita Smart’s Amendment: HFA2/HM( R. Smart ) – 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. This amendment is important to me and the medically fragile families of Kentucky.
  4. Please share this post with your network and encourage them to do the same. The clock is ticking, so please help us spread the word as quickly as possible. Thank you! You are a part of positive change.

 

 

 

3 Things I Want To Tell the Mom Receiving A Rare Diagnosis

Today may feel like the hardest day of your life. Whether or not motherhood is something you planned and dreamed about, you likely fantasized about the life of the person you carried inside of you. Would she look like me and have red hair, enjoy gymnastics and cheerleading, have a great sense of humor, and/or become the first female president?

Whatever it is you imagined for your child, it probably was not a rare disease. Disease, struggle, and/or early death is not something anyone wants for their child.

1. It is OK to mourn the health and life you wanted for your child.

Doing so does not mean you love your child any less or make the statement that you don’t want a child with a disability. Of course you want your child to live a long, healthy life with as little struggle as possible. It is natural to grieve the life you wanted for your child and to do so unapologetically.

2. As this grief lessens, you will imagine a new life with your child.

My daughter is constantly inspiring me with her determination, strength and perseverance. I cannot even begin to imagine what is in store for her because she is my teacher. Before this diagnosis, I naturally viewed everything from my worldview; now I have the opportunity to see it from her perspective. She does not seem to feel sad or angry or disappointed about her disease. This is her life and the only life she knows. Allow your child to show you that a well-lived life isn’t always the way you imagined it.

3. Don’t let anyone define your child.

People will put your child in a box because that’s how information gets organized. Encourage others to think outside that box. It’s easy to put a label on somebody and file them away with other “stuff” we don’t understand. Your child deserves better, and if you don’t advocate for them then nobody will do it for you. Just as your child taught you your new worldview, share your new perspective with others.

5 Tips for Appealing Genetic Testing

You just experienced the shock of learning your child has a rare disease and now your doctor recommends genetic testing as the next step.

Brace yourself for shock #2: In most cases, genetic testing is not covered by insurance. In other cases, genetic testing is covered under limited circumstances.

Insurance companies are in the business of collecting premiums, not paying claims. The term “healthcare” is a tricky word in this context: Don’t confuse a business that makes a profit from premiums with actual care. The harsh reality is that as a business model, they generally do not care about your child’s health if coverage reduces their profit margin.

Coverage for genetic testing is routinely rejected because companies can do so without fear of backlash. In other words, anything that doesn’t affect the majority of its policyholders is up for grabs. The very name “rare” disease sends a signal to the reviewer that denial of coverage won’t create a big enough stir.

Simply stated, the system is against you.

That said, we have received countless denials from two different insurance companies over the past three years, and have successfully appealed every single one. Here are a few tips for the appeals process:

1. First and foremost, have a current copy of your insurance policy.

If you don’t have one, contact them immediately and request a copy. It is your right as it contains everything covered under your policy. Keep a current copy handy for future use, because, unfortunately, this will not be the last time you’re going to need it.

2. Know your rights.

A) If your claim is denied, you have the right to an internal appeal, meaning you can ask your insurance company for a full and fair review of its decision; B) You often have the right to demand a specialist in the applicable medical field perform the review if denial was based on medical criteria. Request it. These specialists will have more independence and a better understanding of rare disease patients and the value of genetic testing; and C) You have the right to an external review from an independent, third-party – keeping in mind that their “independence” is debatable.

3. Ask your doctor to write a letter.

Most doctors are well versed in this area and will likely mention it when they discuss genetic testing with you. If not, initiate the conversation and coordinate their assistance.

4. Request all documentation related to the claim.You have the right to copies of all documents, letters, and peer-to-peer reviews related to the matter, and all guidelines, protocols or other criteria on which the decision was made for denial.

5. Consider the assistance of an attorney.

There are plenty of attorneys who offer pro-bono (FREE!) assistance. Ask around your community and groups.

Now you are ready to appeal. I like to include a photograph of my child with the appeal letter. Whether a picture is effective or not, I want the reviewer to see the human side of the appeal.

To the Parents Just Receiving a Rare Diagnosis

This is a day you will never forget: The day a doctor tells you your child has a rare disease. I recall doctors using medical terms I’d never heard while showing me MRI images I didn’t want to see.

The initial shock felt like a really bad nightmare. How had I lived 36 years without ever hearing about this horrible disease? It was incomprehensible to me that this disease even existed in the first place, let alone that our precious child has the misfortune of having it. How was this even possible? Why is this happening to my child?

Statistically, we had a better chance of winning the lottery, but the news was the complete opposite. The clinical diagnosis was worse than I ever imagined: I was told that my two-year old had a progressive neurological disease with a life-expectancy of five to seven years.

Every experience is different, but here are a few important things I’ve learned by being the mother of a child with a rare disease:

1) You are the expert when it comes to your child. My daughter’s initial diagnosis was incorrect. That’s right. Turns out she has a completely different disease. We are all conditioned to believe that doctors know all the answers, when in reality they do not. What they do offer is a background of extensive medical training, and perhaps, most importantly, the experience of seeing countless patients with a similar presentation of symptoms, etc. so they can diagnosis and treat  you. However, when your child has a very rare disease, most have never seen a patient like your child. An excellent doctor will acknowledge that the parents are the experts when it comes to rare diseases and ask for your input;

2) Instincts are more scientific than a doctor’s best guess. Again, when the diagnosis is rare, parents know more than the professionals;

3) Don’t be afraid to seek counseling. This diagnosis will change your life in an instant and take you on a wild emotional roller coaster ride. Your marriage, family, career, finances, emotional well-being and personal health will suffer from this diagnosis. Seek help;

4) Try, try, try to take care of yourself. You hear it every time you fly on an airplane: Please secure your own oxygen mask first before you try to help others. I constantly fail in this department, but it really is one of the best things you can do for your family;

5) If you don’t advocate for your child, NOBODY else will do it for you. You can do as little or as much as you want, but all of it begins and ends with you. That said, there are many individuals and organizations here to help you navigate your way. Some of my best resources are other parents farther along on this journey. Network with them via social media and ask for their guidance. Rare disease organizations, patients and parents are gaining a stronger presence each day;

6) You are NOT alone. A rare diagnosis can feel really lonely, but there is a community here to support you. They may not live in your community per se, but social media is a powerful tool to unite virtual communities. Although our children may have different diseases, we all share a similar journey. Find a group you feel comfortable with and share your story;

7) Regardless of your faith, don’t rule out science. Our child was diagnosed through Whole Exome Sequencing after being misdiagnosed by two doctors. Advancements in genetics are being made daily. Daily;

8) You will learn to live in the moment, which might be the greatest gift on this journey;

9) Prioritize your daily life. This is tough because everything shifts with this diagnosis. This may take years to figure out what works best for you and your family; and

10) Be kind to yourself. It’s easy to blame yourself for your child’s condition, but none of this has anything to do with fault.

 

 

Follow

Get every new post delivered to your Inbox.

Join 78 other followers

%d bloggers like this: